Frequently Asked Questions About Autism
From Indian Families:
Helpline Compilation

In each issue of our journal, Autism Network, we answer as many questions about autism, dealing with behaviors, and other issues raised by families in India. Below is a partial compilation of these questions and answers. We have sorted these by general topic, but you will find comments on multiple behaviors and concerns within a given question and answer as well. We have been told that browsing through these questions is also a good way to better understand the concerns and situation for parents of autistic children in India.

See also: Original full-length articles by or for AFA

 

Diagnosis and Definitions

Q. My friend has a younger sister, 14 years who always seemed odd to me. I have known her since she was born and see her as if she were my own sister. Lately another family friend of ours has been dating a doctor, and as soon as he met my friend’s sister he noticed that she suffered from a very mild form of Autism. So far no one has told her parents or anyone in her family, because they would never accept something like this. They would also never speak to whoever told them for the rest of their lives. We are currently trying to find a way to break it to them.

I just wanted to ask if there is any advice about telling parents their child is autistic. Also until someone finally tells the family, is there anything that can be done to help her without the family’s knowledge?

A. There are two things I understand you want to address: how to tell the family and how to help the girl. It may not be possible or appropriate to tell the family their girl has autism without a formal diagnosis. And since the family is not willing to go for a diagnosis this is obviously ruled out. An option might be to leave information on the noticeable symptoms particularly of persons with high functioning autism, in their home, for the family to come across and come to their own conclusion.

Regarding helping the young girl it depends on what specific and evident issues she requires help on. Particularly given that she appears functionally quite able we would need inputs on specific areas where she requires support.

Q. My son is 23 months old, but he has not started speaking. But on his own he has learned certain things by observing other family members. He is very active, enjoys playing with other children, loves music and watching TV and builds with blocks at a good level. He feeds himself. He tries to copy and do what others do. He is healthy and has achieved all milestones except two:

1. His speech is not clear except a few words like 'bye', and 'ma', and that too not meaningfully sometimes.

2. He follows only a few commands like ‘do’, and comes when called. But if we show him something he does not pay attention. He prefers to do what he wants: like he will bring rotis and serve you if he sees that you have finished your roti and your plate is empty. When he wants to eat something he will try and get it or he will point to the objects and take us to the kitchen. He is able to make us understand all his wants: whether he wants to go to the toilet or to the market.

I have no doubt about his intelligence as he leans very fast by observing others. I just want to know what the real problem with my son is. Are these the symptoms of Autism?

Finally, can I undertake the proposed two year bio-medical programme of chelation and HBOT for my son.

A. It is difficult to say on the basis of your description whether your son has autism or not, as for that it would be essential to make an observation of your son’s behaviours and have an interview with you and your wife. Receiving a diagnosis for your son’s condition should be of top priority, as that would help direct you to an appropriate treatment approach. If we know where you are based we could refer you to a competent diagnostician, ideally a developmental paediatrician or a child psychiatrist with extensive experience of autism.

As for undertaking the advised bio-medical programme, perhaps you want to first arrive at a diagnosis for your son’s condition before you can consider whether to go for it or not?

Q. My three year old daughter is diagnosed 'Autistic Featured' by JSS Hospital Mysore and KMC Hospital, Manipal, in their differential diagnosis. She is taken for speech therapy to KMC regularly and I could notice a slight change in her activities but not in her speech. Kindly suggest for further steps that I can take to cure my daughter at the earliest before it is too late.

A. The purpose of a differential diagnosis is to rule out all other developmental, neurological or genetic disorders which may show characteristics or 'features' that are similar to, or that may overlap with those seen on the Autistic spectrum. From your letter, it appears your three year old has been diagnosed as falling within the Autistic Spectrum.

Findings suggest that giving speech therapy alone may be helpful; however, progress can be limited due to the nature of the disorder. It is vital for you to understand your child's difficulties. We suggest you speak additionally to a special educator or psychologist, who has a sound understanding of Autism and perhaps you yourself read up on autism to help you understand your child better.

To date, research indicates that giving early intervention in the form of specific and appropriate training methods that are tailored to your child's needs and learning style is the one way to help your child reach her maximum potential. Prior to this, it is important that a special educator take a detailed assessment of your child's strengths and difficulties to develop an individual education plan for your child. There are a number of intervention styles / methods, and you would want to choose one that would benefit your child most.

Autism is a complex lifelong developmental disorder, and has no cure, medical or therapeutic. However, through early intervention, many children have been able to lead productive and meaningful lives with support from their family, friends and professionals. A number of other organisations around India provide early intervention such as at Action For Autism.

Q. I am an insulin-dependent mother to a boy just turned three this November [living in the Phillippines]. He has been diagnosed to have Global Developmental Delay when he was a year old. Since then he has been on occupational therapy, and just three months ago we have incorporated speech therapy. What I noticed is that he frequently tiptoes and shakes (or wiggles) his arms and hands. Could these be signs of autism? I need some light on this please.

A. The behaviours you mention may not mean anything. Or they may: only a direct observation of your son can help clarify this.

What would you say is your son's developmental age now? Supposing if he is at an 18 month level physically, does he do other things a child of 18 months would do?

Does he look when you try to draw his attention to anything? When there is an aeroplane in the sky and you say "look at the plane" does he look or does he not respond? If you point to the aeroplane with a pointed finger and say "Look at the plane" will he look up directly at the sky or will he first look at your finger before following the direction where you are pointing. A typically developing child will be more apt to do the latter. Does he turn to look at you when you take his name? When you come into the room after a period and take his name does he look at you and then follow you with his gaze as you move around the room? What does he do when there are other children around?

Perhaps the best way to clarify your doubts would be to contact the Philippines Autism Society.

Q. My daughter is 27 months old and still has a vocabulary of about 10 words. Recently she had some tests done in Ranchi (Jharkhand) for hearing as well as brain scanning as suggested by a neurophysician. She has been given medicines for Autism. We have not started the medicine still. I want to get my daughter diagnosed to ascertain whether she really has Autism. Please suggest where we should we take her for diagnosis. Also if you can advise on Speech therapy centres in India.

A. You can obtain a diagnosis for your daughter from NIMHANS in Bangalore, PGI Chandigarh, All India Institute of Medical Sciences Delhi, Ummeed in Mumbai, Hinduja Hospital Mumbai, as well as in most major hospitals. In addition there are many individual professionals who can give you a diagnosis. I would like to add that you do not require a brain scan for a diagnosis of autism; however the scan can help rule out other conditions. Also, there are no medications forAutism though there are medications to help counter some of the symptoms of autism.

While you want to get a diagnosis, it would be helpful to start teaching skills to your daughter as soon as possible.

Q. The last one week has been the most traumatic one for my husband and myself. We discovered that our first and only child, who seemed so completely normal to us has PDDNOS. It is devastating though we have been trying to let it sink in. It only now occurs to us, that every single task that our beautiful little girl performs on an everyday basis must be painful for her physically and exhausting mentally.

Her therapist said that she is a high functioning PDD child. We hope to God that it can only mean that the best for her is yet to come.

As anxious parents, we have several queries that we would like to bother you with; maybe once too often. We have accepted that God has chosen her in order to bring us closer together as a family and as friends. But we are terrified of what the future holds for her. We also believe that God works through people like yourselves. You are our Angels of Hope. Please help us in any way that you can.

We realise that the early evaluation of her condition and her high functioning are positive signs for her development, but it still leaves us with many fears and apprehensions.

Will P ever lead a normal life in the company of normal people? Will she find peers in school and college who will not pick on her and reduce her selfesteem to dust? Can we find means in which at least her sleep will be restful? Are there any handbooks for daily reference as to how we can handle our dear child? Will reprimanding or removing privileges when she has done something wrong cause her condition to worsen? Can we just be normal with her or does she constantly require our undivided attention?

If her playschool turns her down, is there any hope that she can be brought up with the right conditioning?

Approximately how many months or years of therapy would it take for her to progress in a normal fashion? Well, there are several hundred queries that come to mind as I write to you. Will she ever speak like you or I do? I can not wait for her to tell me that she is hungry or happy or hurting or just anything!

I am sure that I have bombarded you with too many things too suddenly but that is in the hope and belief
that you will support us in this long arduous journey.

A. Receiving a diagnosis of autism for ones child can be a most painful experience. But as we learn to deal with the pain we also begin to accept that though that one moment when we receive the diagnosis seems like the one defining moment in our lives; yet our child after that moment is actually the same child who was there before. Nothing has really changed except the way we view her.

Of course the fact that our child is that bit different from typically developing children with various complex needs means that we have to make adjustments for that difference. Many adjustments. Not merely in our expectations. But also in how we had planned our lives and what we might have to do for her.

Yes life with autism is a very complex situation for any individual to deal with, just as it must be for P. We want to understand that and help her, yet not teach P that hers is a terrible and difficult life. The initial weeks and months after a diagnosis is always a period of confusion and fear - fear of something we do not quite understand. But as our understanding of autism grows that fear and trepidation is overcome and replaced with the knowledge that yes there will be progress. How much progress will vary from child to child and hard to predict, but there will be considerable progress and we will learn to celebrate every step that P takes towards that progress. Because she will be putting in as much effort as any of us.

As parents you will want to learn as much as you can about autism. There are many good books available. Knowledge will lead to the confidence to deal with P in a manner that will be most beneficial for her. There are numerous books you can read up - and the Forum for Autism Mumbai library will help you with that. So will the net. Learn from P's therapist how you can help P and generalize her learning. For instance simply removing privileges may not teach her anything. Whatever you do must be based on sound scientific principles of behaviour modification. Whatever methods you adopt to bring about behavioural changes must make sense to you.

Finally, P may or may not eventually go to a regular school, she may or may not go to college, she may or may not speak like you or I do. But she can be a happy child. And that will depend on us. P will always have autism. Autism cannot be cured. But yes the symptoms are often minimized through early appropriate intervention. So read up on autism, help P have the best learning environment possible, and enjoy her. Despite her diagnosis she is still the P you love.

Wishing you a wonderful journey with your child.

Q. Recently we came to know that our five-year-old son is autistic. The symptoms are as follows:

He learnt to speak very late, at three to four. Now he is five. He can't speak fluently and often speaks in the third person. He can't mix with other children and plays with unusual things, like a small stick or paper pieces or broken wheel of his toy train and spends almost the whole day with that. If he is asked ten questions, he answers only one or two, either properly or improperly in spite of knowing the proper answer. He does not respond to outsiders, does not even make contact with them with his eyes. He protests if wearing a new shirt or a pair of new shoes, or following a new path to his school or to taste a new food. He likes to strike objects with his fingers creating a sound and occasionally is found, rubbing both his jaws together. He shows little interest in learning anything new, as a result, neither can he sip water or milk, nor can he spit water out from his mouth after brushing his teeth. He cannot tolerate the sounds of horns. He is very restless, inside his home, but very calm outside. Sometimes he laughs without any apparent reason and sobs for minor causes.

His memory is good and he seems quite intelligent. At the beginning of his school, teachers complained about his non-cooperation. However, at present, he is co-operative with them. He reads in nursery and doing well with his studies in a regular school.

But after knowing about his autism, we became anxious about his education and future life. There is no special school in our town and we don't want him to get admitted in Kolkata, far away from us. Kindly help us with your advice for continuing his studies in the normal school he is attending and regarding his other deficiencies.

From the internet, we found the name of a book, "Biological Treatment for Autism and PDD", authored by U.S. based scientist, William Shaw, Ph.D, which claims dramatic improvement of autistic child by biological treatment.

A. As you can figure from observing your son, autism, unlike mental retardation, is not a global developmental delay. Your son is young and of course the best course is for you to educate yourself about autism in order to facilitate your sons progress.

Autism primarily affects the areas of communication, social skills, and thought and behaviour. For instance your son cannot play with other children or respond to adults. He appears to have difficulty looking at people when addressed or when addressing them to get his needs met. He has good speech, yet answers questions infrequently, and that too sometimes incorrectly.

Play is also affected, so that a child might not play appropriately with toys and which is why M keeps himself occupied with sticks and odd bits and pieces. Many individuals with autism have a good memory. Others may be of average or above average intelligence. There is also often a need for sameness. Which is why M has difficulty taking a new route or trying new food. There may be differences in the use of sensory modalities. So your son finds it difficult to tolerate some sounds, yet enjoys striking notes and listening to them. Or rubbing his jaws together.

You son appears to be managing well in a regular school. Rather than look for a special needs school to send him to, you want to focus on helping him continue in his current setup. Take note of his strengths and work to minimise his deficits.

On improving his communication skills check the issue of Autism Network Vol IV No 3 December 1997. M might have speech, know the answer to a question, and yet when queried may not be able to come up with a reply on every occasion. What you want to do is to provide the correct response, so that he understands the function of speech. Example:.
"How many biscuits do you have?"
"Three."
Supposing you know that he will say "One," incorrectly when he actually has three, you pre-empt his "One" with your "Three".

Above all, avoid asking him needless questions. For instance if he knows his name and can answer "M" when asked his name, then you do not want to ask him his name. Only let outsiders and visitors do so. And if he then does not respond prompt him as mentioned earlier. There is an entire range of exercises as well as things you can do in the course of daily interaction with SR to help his communication.

To help develop his ability to look at people when addressed try the following:
When giving an instruction or telling him something first take his name, pause for a couple of seconds, and then say the rest. For instance,
"M?" pause, "come have dinner."

When giving him something - rather than just handing it to him - hold the object between your and your sons eyes in the line of vision, such that in order to look at the object and reach for it he has to inadvertently look in your eyes. When addressing him, whenever you can, lower yourself to his eye level in order to make it easier for him to look at you. And whenever you get a spontaneous look from him acknowledge it. Avoid telling him "Look", "Look", repeatedly. We often fail to realise how irritating it can be for a child to be continuously told to look when it is actually difficult and sometimes painful for him to do so.

From your account M is doing well in his class. As he learns and grows be aware of a couple of issues. M has good memory. This is a strength that you want to use and that will also enable him to learn well. At the same time, good memory in our children can mask a learning disability. So while he might learn to read and calculate, you want to be aware to ensure that simultaneously his concepts are clear and that he is not doing these things by rote, as a mechanical ability.

There is currently a great deal of research being carried out on the biological basis of autism. Some children have improved with changes in diets and allied methods. Some do not show much improvement. You could give those a try if you want to.

We do not have the book by William Shaw. However we do have something on the subject by Paul Shattock which you can access at the AFA library. You could also check out the following issues of Autism Network:
Vol VII No 3 December 2000, and Vol VIII No 3 December 2001.

Q. We have a five-year-old son whose behaviour, intelligence, reflex and mental expression are not like other children of his age. We were informed of AFA by the Institute of Child Health, Calcutta, who say he is autistic. Please advise us on what we can do to help our son:

1. He learned to talk a bit late.
2. His fondness of music, TV programmes, general play and interest in nature and animals, trees, the moon and sky is day by day decreasing.
3. He was admitted to a local nursery school but in no way is he having any interest in books, writing or drawing.
4. Only he loves to play with toy buses.
5. He has some hand mannerisms that are peculiar as well as strange sounds he makes with his mouth.
6. He responds to only such talk as he likes.
7. Sometimes he does mischief, drawing the attention of elders.

A. Let me explain a little about the nature of autism; it will help you understand why your son behaves in the way he does.

Autism is a lifelong condition. When a person has autism there are difficulties in three main areas. They are: communication, social skills and imagination.

Many children with autism do not develop speech at all. Some of those who do, may speak very little and their speech is mostly need based that is they speak when they need or want something. They will ask for things they need like "water" or "food". Other times they may use words which seem to make no sense to us. All this is because they have difficulty in understanding how to use language.

A child with autism may not respond to certain questions because it makes no sense to him, like "what is your name?", "what happened at school?" etc. But if someone said "do you want a toy bus?" it would be meaningful because he likes playing with toy buses.

Children with autism have few social skills. Therefore they very often do not interact in socially appropriate ways or know how to draw attention to themselves.

How would a child without autism draw attention to himself? He may do something that he knows his parents want him to do. He may draw a nice picture, or recite a poem, or sing a song. But a child with autism does not know how to get attention and like any other child he wants attention or wants to be able to manipulate his environment in some way. Therefore he may do something which will seem a mischief. He may be scolded but to him it is still attention, therefore even though he anticipates a negative reaction to his behaviours he may want to do it. Therefore you could try and totally ignore what mischief your son has done. But when he is behaving in a way you like, let him know this. Praise him, give him attention - then he will learn to get attention in an appropriate manner.

You have mentioned that your son only plays with toy buses. What you can do is to join him in his play. Talk to him clearly about the buses. Where are they going? Who is sitting inside? Tell him, but avoid asking questions. Just make comments. By joining him in his play you will be interacting with him in a way he understands. Then slowly you can teach him other forms of games.

In your letter you have said that your son has certain mannerisms and makes peculiar sounds. You may see many children with autism who have what are known as sensory difficulties. We all take information about our environment in through our senses. In children with autism, one or more of the senses may be over sensitive or under sensitive. So a child may cover his ears to cut out a sound or make strange sounds with his mouth to cut out a particular sound. Children with autism often flap their hands or hop to help them to deal with sensory difficulties, and this in some way relaxes them.

Q. I have a worry about a niece of my husband's who is 18 months old. She is a beautiful child but I see symptoms that I have seen before. I help part time in a school for children with behavioural problems and have helped with children with autism. Little S shows a lot of the same traits as in other children with autism. I know that time is a great benefit on the road to helping in problems like this. However, I cannot find a way to tell my family of my fears. Should I leave things until someone of the medical profession notices? Please help.

A. Since you know about autism you are also aware that the earlier a child receives help the better the prognosis. I dont think you want to wait for the family to happen to meet a medical professional who will then inform them of their child's condition. Many parents lose precious years of their child's life for the same reason.

You are in a difficult situation. I think what you could do is leave some literature around that lists some of the traits your niece exhibits so that they come to her parents notice. Maybe a list of behaviours that are the red flag for an autism diagnosis.

Could you not talk to your husband about it and share your concern? Since it it his family he might have a better idea how to deal with the parents.

Whatever you do - just do it. The parents might find it hard to forgive you for it now, thats understandable, but in a few years they wil be grateful for the years you saved them. In addition, check to see if your area has a helpline run by a local society that could guide you.

Q. I am a resident of Kolkata. I have a child of two years of age. As per the Doctors she has some abnormality in responding to our spoken speech. Though she sometimes responds to our spoken speech but she has not yet developed speech and only utters fragmented words like "Dada", "Baba", "Kaka", "Ma' etc. Otherwise she continues to utter words as per her own. In this circumstance we are very upset as some of the doctors have said that she may have some symptoms of Autism. Please provide us information on this subject like:

1. The symptoms of Autism
2. Its treatment and chances of recovery
3. Whether autistic child can lead normal life as others

A. From the information about your daughter that you have provided it is possible your child does have Autism. Autism is a behavioural syndrome and by the age of two you can see symptoms in the social, communicative and play behaviours. There are a wide range of these behaviours and all children do not show all of these, as Autism is a spectrum disorder.

You have asked about the treatment and the chances of recovery. Autism is a life long developmental disorder but with an early diagnosis such as your daughter has received, and an intervention (training and teaching) that is very specific to the special needs of your daughter you can help her to progress towards her maximum potential.

Many people with autism can lead a fairly independent life but that depends to a great extent on the degree of autism and the kind of the training that is given. Training, not only refers to teaching but also the comfort and acceptance from people in the child's immediate environment. This is of course true for every child whether typically developing or not. But for the child with autism, living in a confusing world where social rules appear so arbitrary and confusing, we believe that comfort and acceptance is crucial.

One of our therapists shall be visiting Calcutta at the end of December for a two-week period. If you want to contact her, do get in touch with us for details.

Q.I came to know of Action For Autism from the local pediatrician. It restored my courage to some extent. My son aged three years and four months has provisionally been diagnosed as autistic at PGIMER, Chandigarh in September 2000. The tests done were MRI, EEG, besides which the psychiatrist asked questions to arrive at her diagnosis. Before diagnosis my son had no proper training due to lack of knowledge and lack of infrastructure. He wasn't pointing or speaking much, had almost no eye contact, and was hyperactive and restless. He has been taking a herbal medicine since June 2000.

After diagnosis the boy was sent to his uncle's place where unlike my home, there are boys of his age and his mother did as much as she could do to teach and train him. Within fifteen days he improved remarkably, such as using finger pointing, eye contact, language etc. From mid October he has joined a play school as directed by the psychiatrist and according to feedback received from the school he plays with other boys .

I have gone through your URL which is in question and answer format and it helped me a lot to clear my doubt but also created confusion. For example it suggests that autistic boys may be very sensitive to noise, touch, that they have sleeping problem etc. I also read this on the web site of TEACCH. This is not present in my son.

A. I am glad to know that you found our website useful, and that it 'restored your courage.' It is so important for parents to have hope and to know that though autism is a serious developmental disorder, with appropriate intervention all children with autism can move forward. As you have noted yourself, your son made progress when put in a stimulating positive environment. This progress can be accelerated by a focussed and structured program that uses things in his environment that motivate him, to teach him to communicate and interact. Many parents all over the world have successfully carried out home programs to help their children and there is no reason why you and your wife should not be able to do the same. AFA will be very glad to help you do so, as this is our focus.

For parents who live outside Delhi, we offer one week and three month outreach services. During this period, the parents can come in daily with their child, and while the child attends our model school, the parents observe and get training from our staff. We also have a Mother-Child Program, where mothers run a day school program where they work with their children and get feedback and suggestions from our staff.

You said you were confused by some statements on the web site that did not apply to your son. Autism is a spectrum disorder i.e. children with autism can have varying skill levels in different areas. What is common is difficulty in communication and social skills - but this too can manifest itself in very different ways. Many children with autism have problems in processing sensory information, in different ways. Some may have acute hearing, which may cause them pain. Some may have tactile issues, leading to sensitivity to textures or pain insensitivity, or difficulty with hair cuts or nail cutting or bathing. However not all children with autism, have these issues, and if your child does not have it - just be grateful! It is useful to know that these may exist, so that if you see some unusual behaviour, you can know that this might be a possible cause, and you will know how to deal with it.

There is no medicine that can cure autism. Products such as the one you refer to should be viewed as tonics at best, not medicines. The only proven method of intervention is a structured program based on behavioural principles. Your son will benefit, and you will feel more empowered by getting more informed and aware about autism.

We have a large collection of books on autism at our center where you may read at no charge. You can also access a lot of information on the net - but do try and visit good peer reviewed sites, or you can get overwhelmed by all the unproven theories on autism treatment that you may encounter on the internet.

Q.My four year son is suspected to have autism. He has been provisionally diagnosed by the All India Institute of Speech & Hearing, Mysore, as having autistic features. We had also taken him to AIIMS, New Delhi where Doctors are not too sure whether he can be termed as a pure autistic child. It is the opinion of some of the Doctors that he is a borderline case of autism, which can be cured by proper Behaviour Therapy. We are taking him to a clinical psychologist in Bhopal where we are currently staying.

I have heard lot of good things about AFA and would like to benefit from your experience in this field. Please advice and counsel me as a worried father of an autistic child.

A. Having conflicting diagnoses can be very confusing and distressing, but hard though it may be - it is important for your son's sake that you focus on what is important. It is not the label that matters but figuring out what your child needs and finding a way of helping him to compensate for or develop the skills he lacks. As autism is a complex disorder as well as being a spectrum disorder it is important for parents to spend some time understanding the ways it is likely to affect their child, so that if the child has a challenge in a particular area, then appropriate intervention can be delivered. Unlike a disability like blindness - where the skill area that is lacking is easy to understand, autism can effect the child
in so many different subtle ways that the parent needs to develop expertise to figure out the specific areas of challenge for their child. The good news is that with appropriate intervention all children with autism make progress - some more than others. It is hard to give a definitive prognosis for any child because each child's skill levels are different, and the environment the child lives in has an enormous impact on the child's progress. Rather than searching for a cure - look instead to train yourselves in affective teaching methodologies that have had proven success so that you can help your child compensate and develop the skills he lacks step by step, perhaps for a good part of his life. We would be very willing to help you and be your partners in your journey.

 

Language and Communication

Q. My baby is not yet signing but I’ve started trying to introduce a few signs. I do have a question though and am wondering if you have any advice. My wife speaks Hindi and is trying to teach it to our son. She speaks only Hindi and I speak English to him. But I am wondering how to fit signs into this. Whether I just use the signs with the English words or also with the equivalent words in Hindi as well?

I had a thought that if I was to teach the sign for the word in English and then in Hindi, it might be too confusing and our son might be at the risk of using neither languages and just signing.

A. Good question! Research has shown that sign language actually helps children learn more than one language simultaneously. I would suggest using the signs along with both the English words AND with the equivalent words in Hindi – this way the signs will help bridge the gap between the two languages and your baby will learn that signs and words are symbols for objects and concepts.

One parent in a bilingual family could show their child a ball while at the same time showing the sign for “ball” and then another family member could sign “ball” while saying the word in the other language. Seeing the same sign while hearing different words helps children understand the meaning of the concepts behind the words and the signs. Using sign language in this way has also been helpful for families who speak two or more languages or for families who have adopted children from another country who speak a different language.

Sometimes children who learn two different languages will mix up the words from both languages at first, simply because they don’t yet know enough words to separate the languages. But it won’t be long before these children will learn to code-switch, or separate their languages and use each one appropriately in the correct setting.

Q.My daughter P has difficulty connecting with people. NIMHANS has diagnosed deficiencies in eye contact and speaking ability and advised us to improve eye contact first. After certain efforts we have observed some improvement in her eye contact. Her tantrums have been reduced to some extent. But there is no change or improvement in speech and she is not speaking a single meaningful word.

I am working in Airports Authority of India and presently posted at Guwahati with all India transferable service. I will be transferred out from Guwahati within one or two months. I am a Bengali with mother tongue Bengali but not settled in any one place due to the nature of my service. I am in a confused state to decide my next posting either at Delhi or Kolkata. Except that in Kolkata my mother tongue will be used, Delhi will be better in all other respects including facilities available. I will be thankful if you kindly advice me for the following: is the mother tongue environment is essential for my daughter to develop speech.

A.Is it most useful to have an environment that only uses the child's mother tongue? That is a difficult question to answer. If your job profile is such that you have to travel around and mostly be posted to larger cities, then chances are you will be mostly in multilingual environments. Whether you communicate with P in her mother tongue or otherwise, what is perhaps most helpful is to communicate in the language that is used the most around her. So as you say her mother tongue is Bengali, but most people in her environment speak Hindi for instance and Hindi is the language she hears the most, then Hindi is the language that would be most useful to use, initially.

Not all will agree with this view: but as I said this is a difficult question to answer.

However, what is even more crucial is that P understands the purpose of communication. For you see, it is not so much that she cannot speak, as that she does not understand that she could use speech to regulate her environment. Therefore, when she says "Baba" you want to act as though she is addressing you, and respond accordingly. When she says "Ma" her mother has to act as though she has been addressed, and respond accordingly. In addition, keep providing her the words she needs to use in various situations. When P begins to use speech she may begin to follow, and later perhaps may use, more than one language.

Q. After six years of marriage God blessed us with a beautiful daughter L. We are thankful to God for the precious gift he has given to us. Now she is three and a half years old. From the fourth month onwards my daughter was suffering from seizure disorder - epileptic attack - it was regular and for long periods. Through the medication and medicines it is now under control. Now this epileptic attack happens only once in 5-6 months.

After one year of age she was trying to talk. Then it stopped and we noticed some of her actions are different. We felt something else is wrong with her. After a check up and assessment from Hinduja Hospital Mumbai we learnt she is autistic. We are again thankful to God for throwing a special challenge in our life. It is his wish and his decision. He will have his own plans….

We wish to have your support and help to go through the special challenge in our life. Kindly give us the information that will shape her future about teaching speech, medicines, and schools in Mumbai.

A. It was humbling to read your letter of total acceptance of your daughter. Most of us have so much difficulty in accepting our children. We believe we love the child we have when actually we love the image of what we want our child to be. Your total acceptance of the 'special challenge in your life' is very special, an example to families, and will enable you to help your daughter far more effectively.

The main areas of difficulty for a child with autism are communication (not just speech), social interaction, and imagination. In addition children have difficulties in processing sensory information. Your daughter had speech but lost it with the manifestation of Autism. What you will want to work on is teaching her communication. You can teach her to communicate with a cause and effect approach, so that she comprehends the function behind speech..

For example, a child might bang on the door when he wants to go out. Usually, as soon as we have figured out what the child wants we provide the want. So when the child cries so as to be taken out, she is at once taken out. This reinforces the behaviour which means the child learns that when I want to go out I have to cry. Instead, when the child bangs on the door I first provide the word/words that should be said, and then provide the consequence. The child then learns that these words precede the need being met. So child bangs on the door:
I first say "Go out." Then I open the door.

Again, say the child takes my hand to the water bottle to indicate that she wants water:
I first say "Paani." Then I give some water.

At the same time, whenever I make a request or give an instruction I ensure that the child follows through. We might need to prompt the response in the initial stages. For instance I ask the child to "sit" and she continues standing. I then 'follow through' on my request by making her sit and then of course always reinforce the behaviour.

Acknowledged teaching techniques that are effective with children with autism are based on principles of behaviour analysis. Every child needs a structured behavioural program keeping in sight the individual's strengths and needs. There is no medication to treat autism. Medication can be used to alleviate symptoms of the condition if it comes in the way of the child learning skills, and along with structured behavioral teaching. Medication cannot be used in place of teaching.

In Mumbai there are a number of schools that take in children with Autism. For detailed information you would be best served by contacting the local, very active parents group:

Forum for Autism, 2nd Floor, Block A, Jyeshtaram Baug, Dr.Ambedkar Road, Dadar, Mumbai 400014, Email: forumforautism@hotmail.com
They would be able to give you more information about services available in Mumbai.

 

Q.My grandson is autistic and cannot talk though he is four and a half years old. He used to talk when he was two years old. He has had a traumatic birth, and stopped talking or even babbling after an occasion when my daughter insisted that I take him for a holiday to my beach bungalow, where he played hell with me and kept crying the whole night. Next I knew that he was running high fever and became very sick. I packed him to his mother the next day early morning, but I have noticed ever since then he stopped talking or even babbling. Though after surfing the net, I have a feeling that autism may be because of neglect by the parents. He has also had a trauma because of his teeth which had to be capped and a tongue tie which had to be clipped.

My daughter had been taking him to a speech therapist. We have now put him on to a homeopath doctor, and there are signs of improvement. Eye contact is slowly improving and he is responding to actions. But he likes to open and close doors, and is very aggressive with the younger sister who is two years old. He will suddenly push her down or pull her hair. He even does this to other little children and some of us in the family. I would like to know whether he should be corrected, by reacting in the same way towards him. My daughter does that, and I tell her constantly not to shout or yell at him or lift her hand on him, but to talk to him firmly and lovingly. I believe the teacher in his school has told her to react in this fashion. Please enlighten us. Will he turn normal like other children?

A. It is clear that you are a very concerned grandmother, and have good instincts about appropriate ways of helping your grandson. You can be a huge help to him and his mother. However it will require that you spend time understanding the complexity of the handicap your grandson has, and are able to be patient and understanding with your daughter, while she takes time coming to terms with her grief, and is able to help her son in a positive manner.

I need to first correct some misconceptions that you seem to have about autism. Autism is a neurological developmental handicap that primarily affects the social and communication skills of the child. As such it is fairly common, that the signs begin to be noticed only around the age of two, and parents typically think that the child has regressed at that time, and tend to blame myriad circumstances that coincidentally happened at that point of time, as the reason for the regression.

Thus a new sibling, an illness, a change of diet or place of stay, the mother going back to work etc are often erroneously thought to be the reason why the child suddenly seems unresponsive. Actually it is just that the child's lack of social reciprocity is more apparent at the age of two when a neuro-typical child starts using a lot of functional forms of communication to explore his world. Thus a single visit to your beach bungalow, or your perceived parental neglect or the dental and tongue tie issues could not be the reason for his autism.

On the other hand his autism could well be the reason why he 'played hell' with you - as children with autism often have difficulty coping with a change in schedule or surroundings. His lack of social reciprocity would make it difficult for his parents to be warm and affectionate with him. Children with autism often battle with sensory defensiveness - i.e. a hyper sensitivity to certain textures, sounds, tastes etc - which may have made him resistant to hugs and the typical social overtures that parents make, that gradually build the bond between them.

Autism effects the ability to understand social rules and both verbal and non-verbal communication. It would have been hard for your daughter - without an understanding of why her child was not responding to her overtures, and the usual means of engaging his attention and getting him to listen to her - to not get dejected and feel unable to cope with the stress of bringing him up. The diagnosis of autism with the typically bleak prognosis that is usually given, would have only deepened her level of distress, and that would explain why she reacts in inappropriate ways to his behaviour even though she has been told more appropriate ways of dealing with the issues.

This is where you can play a huge role. By being supportive and understanding, perhaps giving your daughter some respite, and by becoming more and more knowledgeable about autism and the effective behavioural intervention methods that exist for working with children with autism, you can be a real support and help for her. Give her time to come to terms with her very real grief, and also give her hope.

With a sustained, consistent, structured behavioural intervention program all children with autism show real progress. How much each child progresses is dependent on that child's ability and the environment the child is growing up in. What we can do is maximize his potential by giving him the most positive and nurturing milieu in which he can do so. For us to make that possible it is important that we deal with our stresses, come to an aware acceptance of autism, and decide to do whatever needs to be done in a truly positive way.

Q. My three-and-a-half-years old son has not started speaking yet. We are in touch with a speech therapist. In her opinion he is not yet ready to start therapy

A. Lets put it this way: Z is ready for intervention right now. The sooner you start the better. He does not require 'speech therapy' so to speak. Children with autism usually do not have any physical difficulties with regards to speech. Put simply, it is more an 'autistic inability' in using speech. What they really require is communication therapy rather than traditional speech therapy. However some speech therapists do figure out appropriate methods of teaching. If your speech therapist says he is 'not ready to learn' either she is not well aware of autism, or is not comfortable working with a child who is not easy and compliant. Which is fair enough, because we all have different teaching styles. What you can do is try and find a therapist or special educator who will be comfortable working with your son, and has a clear understanding of autism.

But finally, given the levels of misinformation regarding autism, you have to be knowledgeable about the disorder and about teaching methods because only then would you be able to tell whether what is happening with Z is appropriate or not.

Q. Akash has a problem with language, started talking at three and a half but now his vocabulary is impressive - it doesn't take him long to learn anything new - visual and auditory memory is very good, but he can't really use language to communicate. He still doesn't respond to "what is your name", but can answer, if asked, "what is the colour of...? Or will ask, "please give me water" etc. when he wants something. He repeats words and phrases quite often. He's going to a mainstream school since June and since August is quite adjusted after he was moved down from KG to Nursery and has a maid attending class with him. Any suggestions?

A. Akash's inability to respond to "what is your name? " unlike "what is the colour of...", is understandable. When we ask 'what is the colour of' the response is unchanging. Always the same, if it is red to me, so is it to you and to Aakash. But when someone uses the phrase "what is your name? ", the response could as easily be 'Carol' as ' Shanti' as 'Aakash'. It's a fairly unpredictable scenario.

With kids who have ASD you often have to teach them spontaneous communication. You will want to teach him to respond to his name. Have one person ask the question as another facilitates. For instance you stand directly in front, or better still kneel down to his level directly in front of him and say 'What is your name? '. Have another person who is standing behind Akash, respond immediately from behind Aakash's head, "Aakash". Not "Say my name is Aakash", not "Say Aakash", but simply "Aakash". Rope friends and relatives into the act. Teach them how, and when they visit get them to ask, and you respond. Very soon you will have Aakash pick up the cue and respond with an "Aakash".
Once he gets the idea he will move on to responding spontaneously. It might take a while, but it will work.

Over time you will want to vary the question and teach him to respond with an "Aakash" to that too. There are a number of excellent manuals that you can refer to, to help you develop Aakash's language such as 'Teach Me Language' by Sabrina Freeman and Lorelei Dake.

It is great that you have got Aakash into a regular school that is friendly. Its great if one can find a friendly regular school that our kids can go to and work on their deficits simultaneously at home where the parent has the time and resources to do so.

Q. Our 3 year old child is found to be autistic. A detailed assessment will be ready shortly. Doctors have said it is high functioning autism. Our problem is the child gets done from us everything she wants by means of holding our hand and taking it to the object. She does make eye contact.

She has no speech, except that she can utter many unspecific words. We make a request to advise us what treatment/therapy could be adopted and how we could go about it.

A. It is good that you have had a detailed assessment done, as that will help you in deciding on the programme for your daughter.

The behaviours you have mentioned in your child are ones that are common to young children with autism. You have by now read up a fair amount of information on autism; the more you understand about the disorder the more you will be able to help her. As you are aware, your daughter has an impairment in understanding communication as well as in conveying her needs and feelings. As a result though she has speech she uses it in 'unspecific' ways. You can do a few things to help her improve her communication.

When your daughter looks at something or otherwise appears to be interested in something, label that object. So if she is playing with a piece of string, point to it and say 'string'. Similarly if she is looking at a car on the road, say 'car'. Verbally label whatever she is looking at. When she wants something like say water, and leads you to it by hand then before you hand her the glass of water say - 'water' and then give her the glass. Remember to keep all your communication simple and clear. Avoid using too many words. If you want her to remove her shoes before coming into the house you want to just say 'remove shoes' versus saying 'Take off your shoes before coming in. They are dirty,' or any such complicated instructions.

It's great that she already has good eye contact. What you want to check out is if it is on the same level as other kids or it is less. If less than you want to work on that too.Your daughter may have a few sensory difficulties as a result of which perhaps she does not want to take solid food. Keep trying to introduce new foods, but you do not want to force her. If she resists the new food, drop it for some more time and come back to it after another ten days or so. Food sensitivities come and go, but they all reduce with age and the more comfortable we are the sooner.

Finally, keeping in mind that the one strategy that is effective with all children with autism is structured behavioral teaching; perhaps you could check out your neighbouring countries for training for yourself? Additionally, if you visit India, check out page 13 of this issue for details of our Annual Training Workshop, that we believe you will find useful.

Q.Please give me guidelines in improving P's communication.

A. You have mentioned that he communicates his need by pointing or using single words. Keeping in mind his autism where communicative skills are impaired, and his age, he does communicate a fair bit. This is something that you definitely want to encourage. Praise and encourage him whenever he communicates spontaneously.

Equip him with language - Since he already uses single words, build on his language by introducing two word phrases where he uses single words. For example, "give water", "eat banana" etc.and continue to provide him with the appropriate words to use when he does not know what to say. Even if he does not repeat the words immediately, it is necessary to provide the words. Avoid saying " Say Hello " or "Say Give biscuits" because there is the chance that he will learn to say "Say Give biscuits" instead of "Give biscuits."

Just one question about his pointing. Does he point with a single finger or does he point generally in a particular direction. If he points specifically then that is great. If not, then you could get him to do so by moulding his hand in a pointing manner and then help him to point to the item he desires.

Follow through your instructions - Because of the communication impairment in Autism, very often the person with autism does not understand either the purpose or the meaning of words used. They do not understand that when something is said, something happens. So to help them understand both these, it is very very important to always follow through an instruction. If you tell you son to pick up a toy, make sure that he eventually does it. There will of course be days when he does it immediately and other days when he won't. Tell him once. And wait. Tell him again and wait. If he is still unable to comply then you physically prompt him to respond. If he still does not do it, physically walk him through he activity and then praise him as if he has done it himself. This again needs to be done with a lot of comfort.Aside from teaching him the purpose of language it will also teach him that when you say something you mean it. Not carrying through instruction teaches him that you will try a couple of times and eventually do it yourself so why should he bother at all.

Acknowledge - Always acknowledge any attempt to communicate especially when it is spontaneous. Sometime it may not be possible to speak to the child if you are busy or talking to someone else. What you can do is just stop for a second and tell you son, " I'll speak to you in just a minute", finish what you are doing and then respond to him. You could also tell him, "Papa is busy, go tell mama", thereby acknowledging his attempt to communicate but doing what you have to do as well.

Talk to him - As often as possible talk to him. Use very simple language and tell him things that are happening in his surrounding, tell him details about what he is dong what you are doing, things that you see while travelling by bus or car, that you watch on TV. The important thing here is that you talk about things only while he can see them or while he is doing them, like talking about eating during meals. "Rayan is having lunch"… "eating rice and dal with a spoon"… "sitting with papa and eating"… "papa eating bhindi with rice" and so on. Keep it very concrete and factual and specific to the situation, the reason being that it is sometimes difficult for autistic people to make connections between words spoken and objects or situations so as to use them appropriately in the future. Talking about a situation while in it helps them to make these connections

About himself - Teach him to learn basic things about himself like his name, the names of his family members, parts of his body, names of objects in everyday use by frequently repeating the information to him. You could also ask him simple questions like "What is your name?" and then take his finger and point to himself and say "P". This will give him both the correct words to use as well as teach him how to respond to such questions.

Create opportunities for him to communicate - Most often when we have children with communicative difficulties we feel like we need to figure out what the child wants every time he comes near. We anticipate their needs even before they have thought about it. But if we anticipate each need the child has, we really never give the child the opportunity to communicate. The child learns that if he waits long enough someone or the other will eventually give him what he wants and he learns not to make an effort. So do not anticipate needs. Leave the situation open for him to communicate to you in any way that he can find and then respond to him. Of course do not forget to provide him the appropriate words to use in that situation before you respond. As an example, when he comes into the kitchen looking for biscuits instead of just giving it to him, stop and ask him, "What do you want?" Then say "Biscuits" and give him some.

Back to top

Socialization

Q. I have a question regarding the Turn Taking procedure that you have outlined on your website – I find it incredibly helpful and was hoping for some clarification around what the visual should look like for turn taking between two or more children.

A. Not sure which article you might be referring to. However, here is an illustration of where two children Tia and Sunny take turns throwing a ball. Each is to take three turns. First Tia, then Sunny, then Tia, then Sunny again, and so on. As each child takes a turn they strike out one of the balls on the illustration (or the facilitator may do it for them). This gives a clear indication of whose turn next and how many turns left etc. Trust this is what you wanted:

(see December 2006 Autism Network for original image)

Q. Our five-year-old son has been diagnosed as mild to moderate autism and we have been working with him since last one and half years. We had been to your workshop in Mumbai and we have benefited from the same. During this summer vacation we want to organize some sort of a playschool with such children between the age group five to eight and restricting the group to four or five children only. I would request you to give your valuable inputs as regards how we should proceed and what are the things we should do, our primary focus being improving socialization in our children and making them more self-reliant in day-to-day activities.

A. It is a great idea to run a summer play group. First and foremost you will want to identify families that are genuinely interested in such a play group and not merely look on it as a place to leave their child somewhere for a few hours. Decide how many hours you would be able to comfortably run it every day or how many days in a week. Depending on this you can plan group activities involving music, art and craft, pretend play and drama, picnics and outings to parks, restaurants etc. Since many
of our kids love watching television you can have video shows for them in a group. The program could include the following:

o Sit down group activity including painting, music, pasting, colouring, story telling, pretend play
o Relaxing time with massages, music, and other sensory input like trampoline, therapy ball, water play
o Physical group activities involving throwing ball at a target, walking on elevated path, climbing and reaching at targets, pulling, pushing weighted baskets or cartons across a demarcated area
o Snack time involving opportunities to communicate for desired food items
o Free play time on a mat or a carpet with freedom to choose a desired toy or object.
o Class time if the children in the group are going to a school. In this session you can revise previously acquired concepts.

These are just a few of the things you could do.

Other suggestions
o Perhaps have a therapist observe the group and suggest additional activities.
o If possible get an Occupational Therapist, a Music Therapist, an Art and Craft Teacher to visit for short periods.
o Mothers can (in most cases will have to!) be the main teachers.
o Mothers can take a break once a week or however it suits the group.
o Include Siblings, kids from neighborhood.
o Look for young people to work as volunteers as many of them are keen on such summer holiday projects. Chose friendly and active people.

Since Social Interaction is your focus turn taking activities, going to a shop, visiting one child's house once every week for a small well planned party and organizing a cultural program such as a dance, play, fancy dress, on a terrace or veranda or a living room. All these could be done with your kids together with the regular kids.Use a lot of visuals such as pictures, objects, visual time table with pictures denoting activities to take place that day, in all activities.

Remember the 3E's Enthusiasm, Energy, Excitement!
And of course Fathers to join on holidays and stay cool!
Best of Luck

Q. I have a 20 year old student who was just recently diagnosed with autism. Until this time he was treated as someone having mental retardation. My question is: How does one teach someone with moderate to severe autism the concept that stealing is not a good thing to do?

A. The concept of theft is a very abstract concept. It also requires an ability to read minds in order for me, for instance, to understand how a person would feel if I stole her favourite table linen since it was her mother who had embroidered and gifted it to her. For a person with moderate to severe autism, this level of understanding of minds might be difficult. Therefore rather than trying to teach that 'stealing' is 'bad', what one would have to teach is the concept of 'mine' and 'not mine' and that I do not take something that is 'not mine' without asking or without being asked to. Such a concept would perhaps be easier to teach.

Q. The National Geographic aired a programme called Dogs with Jobs. It was about a 7 - 8 year old severely Autistic boy. They strapped the boy at the waist with the dog and the dog controlled him. He used to run here and there uncontrollably on roads. After a few days he started showing affection towards the dog and playing with him. After a few months they showed him playing on the slide along with other children very much like typical children.

Now as for my son he can manage the studies in school. But somehow inspite of being with children he is not social. He wants to be social but then he has a limited language so he is left out. I was wondering if keeping a dog at home can make a difference at this stage because he is still very small and if it gets corrected now it would be great. Dogs do not speak so he will have to talk. Has anyone else tried it?

The psychologist who helps me in school says that he might get stuck to the dog and not talk to people. I doubt so. Lately he has been spending too much time on the computer and piano so his behavior regressed during the winter break. Now we have removed them. Tell me would it be a good idea to keep a dog or would it have an adverse effect.

A. That's an interesting letter! That R does not become sociable despite being around other children is to be expected. Being around other children can help if R is facilitated in his social interaction. It would be hard for him to make connections on his own. And even when he does try it may not be on a level that other kids his age understand and therefore they may not respond to his overtures unless facilitated by an adult. I don't know whether being around a dog will make R speak more. I am not aware of any research findings on the subject. But it will help him in other ways as he will learn companionship and caring.

You could view having a dog like having an interaction with a child older or younger than oneself! The dog does not speak or make verbal demands on the child as a peer age child might. And at the same time it is very undemanding and accommodating like an older person! I don't think having a dog will get R 'stuck to the dog and not talk to people'. That has not been our experience or the experience of any other family with a dog that we know of. We do believethat it is not beneficial to spend too much time on the computer. Of course our kids are good at the
computer. And of course we can use it as the amazing educational tool that it is. But computers also are so predictable that our kids get hooked on it. However computers do not provide social interaction time. So while it is good to use computers, it helps to limit the time spent on it for more interactive time. So I would suggest get a dog definitely if you can, and keep an eye on time spent on the computer.

Q.I am a mother of a four year old autistic son. Both of us parents work in Guwahati. Our son was diagnosed with autism by a pediatrician in Guwahati, Dr. Sabinah Ahmed, when he was two-and-a-half years old. From the age of three years he is being trained by a psychologist specializing in developmental delays of children. My son is not retarded and in fact is quite smart. Hence we have been able to teach him a few things. He is also very emotional. He does everything possible to keep me from getting annoyed. Therefore he is more than compliant. Due to the progress made by him in academics we have been able to get him admitted to a regular school. He is quite gentle with other kids and does not hurt them.

The problem is that his odd behaviour and responses to touch etc appear very bizarre to his own peers. He gets over-stimulated by external stimuli, like touch, sound and sight. I do not want him to be shunned by his classmates and hence I need to modify his odd behaviours with more appropriate behaviours. If we can help him manage his over sensitivities, I am sure he will improve a whole lot more, especially in social aspects. He likes his classmates, but really does not know how to approach and behave with them and does not realise that his odd responses puts some of his friends off. Kindly let me know if we can become a member of AFA and how we could benefit.

A. It is wonderful to learn of the progress your son is making. You have indeed taken him very far on his developmental path and helped him cope with a regular school. You refer to some difficulties he is having with his peers at school because of the unusual ways he expresses excitement. You naturally want him to learn more regular ways of doing so and generally learn to control himself. As you are aware, individuals with autism spectrum disorders may have sensory difficulties. As a result they may respond in unusual ways to touch, or sound etc. Your son could benefit from desensitizing exercises. Your letter does not explain in what way your son responds to over stimulation. Without this information it is difficult to suggest exercises that can help him. Perhaps you could write in with a few specific examples.

In addition you want to teach your son alternative behaviours for when he is excited. For instance if his unusual behaviours are to do with his hands: give him something to do with his hands when he is excited. Teaching the concept of private and public in relation to behaviours can also be helpful. He thereby learns that it is okay to have certain behaviours when he is on his own, and not when he is in company. Try also using social stories to help him learn appropriate behaviours in specific situations (see Autism Network Vol VI No 3 and Vol VII No1). Social stories can be amazingly effective when well written and used. You might consider discussing with the principal, the possibility of giving a talk to the kids at his school to create awareness about disability and help his classmates see the reasons behind your son's behaviours. Kids can be very unaccepting, but they can be great buddies also if an adult can facilitate them well.

Action For Autism is a parent organisation. Its aim is to create a society that is inclusive of our children. AFA is a movement aimed towards this end, through the creation of awareness, developing teaching methods, imparting training, facilitating the formation of parent support groups, changing legislation, and so on. Every member contributes directly or indirectly to this goal and a brighter future for our children. Should you decide to become a member you will be part of this pioneering movement.

Q. It has been one year since I put my son on GFCF Diet. The improvement I see is from his two or three word sentences he can speak much more. He is able to recall events, read story books. His grip is weak but by making him write everyday he has improved. He draws and colours and can write fairly well. I am working on teaching him taking others perspective and predicting events, WHY which is most difficult to teach.

I used to call children home for play sessions during the summer vacations. Initially he resisted but then started enjoying. He liked the action games like follow the leader, jumping over, statue. He shows little interest in board games. In mainstream school he would be required to follow instruction in a group which it seems he is not responding so well. What can I do about it. Is there any book in AFA regarding social skills that would be helpful in school?

A. It is good to learn that your son is doing so well. Regarding predicting events, to do this a certain amount of visual clarity is required. How are you doing this? Are you using calendars and, if it is events in the same day, may be schedules? He needs to know and understand how his own time is organised before he can start predicting events.

Also your son can be taught to take other people's perspective but first he needs to identify his own emotions and then those of others. There are books and activities on this subject. Your son enjoys action games because it is clear what he has to do and the enjoyment is immediate, but board games where the aim is winning is rather an abstract concept. You could get him to play some structured physical games first and then move on to simple table top games where it is very clear what he is supposed to do.

You will also need to work on joint attention especially if you want him to sit in a group and pay attention. There are a number of things one can do to enhance social skills some of which we have discussed in earlier issues of the journal.

You will also find useful material in the AFA library.

Q. My son likes to be on his own. How do I change this?

A. We don't know how much time you are able to spend with your son daily. If, say, you are able to devote about one hour one-on-one with him on a daily basis, then you may want to break this time into shorter periods: of interaction based on your son's attention span, and periods of being left alone. If, for example, your son's attention span extends to about ten minutes, plan on an interaction lasting 8-9 minutes. Give him total attention during that time. Engage in activities that are to his liking. Just have fun with him singing/chatting, playing games/rough and tumble, reading, colouring. At the end of the period tell him that he can be on him own for a specified time, maybe 3-4 minutes. Mark a clock to show him the specified time when you want him to rejoin you. If he joins you on him own after the given time, acknowledge. If not, remind him by showing the clock. Repeat the process. Once he is comfortable with this arrangement, you may want to shorten his time to be alone and increase his time to be with others. This will allow him to enjoy the company of others as well.

Q. My child is unable to make friends in school. She cannot play or talk with others. Please give a few suggestions.

A. Although your daughter wants to have friends she is unable to initiate and/or sustain her friendships. Also due to her communication difficulties she will be unable to initiate and sustain a conversation over a length of time like other children of her age. You might want to assist the process by inviting just one child of her age to your home and organise games, which involve each child talking in turn. This will help your daughter join into a shared activity and learn to enjoy this simple social interaction.

Teach her also how to play simple turntaking games.
A simple one could be one in which each child takes a turn to fit one block onto another to build a tower. If there are no other children, you could take the place of the second child. Say "lets play a game. Mama will take one turn and then N will take one turn, then Mama, then N, until all the blocks are fixed onto the tower." Ensure you put all the blocks to be used in a tray or box next to the two of you. In any case, avoid spreading them out on the floor or a table. The game ends when the all the blocks have been fixed into the tower and the tray is empty. Please be careful never to add more blocks half way through. The game must end when the number of blocks in the tray or box is exhausted. Remember, if the activity is an endless one, your daughter is likely to feel de-motivated.

When N is with her friends, she would have a genuine difficulty trying to find the right words to use. As you know, Autism is a communication disorder and not just a speech disorder. Therefore though she may have the ability to speak and a wide vocabulary, she would be unable to use the words appropriately (the right words for the right situation). You can start by teaching her some very basic social communicative skills like greeting people or saying goodbye. When there is a visitor to your home for instance, position yourself behind her and say "Hi" or "Hello" or "Namaste" to the other person as though she herself were speaking. Avoid prompting with a "Say Hi" or "Say Namaste." You want to prompt with a simple "Hi" or "Namaste." Similarly, when the visitor leaves or you are leaving after a visit, have someone bid goodbye to your daughter, stand behind her and prompt with a "goodbye" and raise her hand and wave it appropriately.

We hope these suggestions help you make a start in dealing with your daughter's requirements.

Q. Please give me guidelines in improving P's socialisation.

A. It is great that your child is very fond of you all and likes to interact. An important note - people with autism do interact, though often not in a manner that is appropriate, or rather appropriate to their age. They seem to interact mostly when they choose and not when others do. What we want is to teach him to interact in a manner similar to that of other children his own age or simply in a manner that will be socially acceptable… and to enjoy the interaction.

Make times of interaction fun and exciting so that he continues to want it. Use every opportunity to initiate contact. Continue to include him in as many family activities as possible and get him to help around the house…taking in clothes when they are dry, clearing the table after a meal, putting by newspapers neatly. This will help him to feel a useful part of the family as well as teach him the joy of doing things together with someone.

Many children with Autism find it hard to wait. Along with being a social concept waiting also has to do with time which is an abstract concept and so autistic children find it difficult to understand the purpose of waiting. But since this is a very important learning for them, we need to teach it early. To begin with specify the waiting period by marking it with a clear end. The cue to mark the end should be concrete and preferably visually clear. For example, you are talking to a visitor and your son wants your attention. You could tell him, " I will speak to you when I finish drinking my tea", or "…when I finish talking to Uncle". Keep the waiting period very short at first and gradually extend it. A half minute to a minute to two minutes to three and so on. The important thing is to make sure you keep your word. If you have told him you will get up in two minutes then you have to regardless of who you are with or what you are doing. (So keep your waiting period realistic. Do not promise to get up after the tea is finished if you cannot).

Play a lot of turn-taking games with him. They can but need not be the conventional games that we find. Turn-taking can be incorporated into any activity…like peeling peas, picking up toys, fitting blocks, shaking sound producing toys, throwing a ball (or crumpled pieces of paper) into a basket, sorting onions and potatoes etc. The idea is for him to do his bit and then wait until the other person has finished before starting again.

In connection with both communication and socialization, provide him with the appropriate word to use in that context each time he makes an attempt to initiate an interaction by saying one word or pointing. For eg. If he is asking for a toy by pointing to it, you can say "Give car" and then give it to him.

Q. My eight year old son Rahul always laughs when other children cry. This habit is very disturbing to his mother and the parents of the child he is laughing at. How do I teach him not to laugh?

A. This is a comment we often hear from parents. We also have parents say that they have felt frustrated when they have hurt themselves and their autistic child doesn't even seem to notice. This apparent lack of empathy is very much related to the way autism affects a child. Keep in mind that autism is largely an impairment in social communication; people with autism often have difficulty interpreting facial expressions, gestures, and other forms of non-verbal communication. In addition, we know that people with autism often are unable to take the perspective of another person, called the "theory of mind." Therefore, try to understand what is happening from Rahul's perspective: he sees his cousin standing in the middle of the room with "water" coming from his eyes, making strange faces, and loud noises. All the while, his cousin's face is turning more and more red and he starts to jump up and down. Perhaps this scene even looks funny to Rahul, and he laughs. You may think, "but Rahul understands what crying is! He uses it all the time when he doesn't get what he wants!" However, remember that Rahul may not be associating what he does with what another child does, since he likely has an inability to put himself in their position. If he is confused at all, he becomes anxious from his lack of understanding, and begins laughing, which may well be a sign of stress. In fact, it commonly occurs among all people that upon hearing terrible news, or when something bad happens, the person begins laughing instead of crying.

Avoid making comments such as 'don’t you know how he feels?' or 'how would you like it if he laughed at you when you were crying!' Instead, try to teach the appropriate social behaviour by explaining what is happening. You can start by telling Rahul that when you see a person doing this, it is called crying, and these are called tears. Explain that people cry for different reasons, but usually, it is when they are sad or in pain. Model the appropriate behaviour for him, and you could try role playing to let him practice. Also, explain to the parents of the other child something like, "Rahul isn't laughing at your son because he thinks it is funny that he is hurt. Rahul has trouble understanding that crying is a way people show they are unhappy or in pain" so they understand, as well.

Q. Please give suggestions because my son feels bad to be around Down's syndrome and mentally retarded children.

A. As far as being in a special needs school is concerned, there is no reason why it will be unhealthy for him. These other children have social and communication skills that P does not have and therefore there is a lot that he can learn from them. Children learn to be accepting or intolerant about other differences in people by watching adult reactions to them. So if you can be accepting and comfortable with those children, P will be too.
Just a note about his eating independently in school: we want to give our children control but not so much that they control our lives. For example: if you decide not to be present during his tiffin time in school, he may or may not eat for a few days but he will surely learnt to accept the fact that he has to eat on his own at school. If need be talk to his teachers about not forcing him to eat and just let him be. Let him decide whether he wants to eat or not and then respect that decision.

Back to top

Unwanted Behaviours

Q. We recently found out that my son has PDD-NOS. He is 4 years 8 months old. We got his diagnosis at the Spastic Society of Karnataka. The main problem that we have is a behavioural issue. His behaviour is very different when we compare with other kids of the same age group. Suddenly he pushes some body. He distracts other children in the class room. When school is over, he does not get into the bus as easily. Every day he finds a new way of misbehaving with the other children. He is very adamant and very difficult.

A. The Spastics Society of Karnataka would have given you some information on Pervasive Developmental Disorders (PDD), and you would too would have got some information. So you would be aware, that a primary area of impairment in PDDs is that of social understanding. The behaviours your son has are because he has a PDD and not because he is a “bad boy.” He is not misbehaving. Much of the behaviours that our children manifest which appear “odd” or “different” or “unusual” are because of this impaired understanding of social rules. His pushing other children could be due to a variety of reasons: to get the attention of the other children, an inappropriate effort to play with them, or even to get the adult in the environment--the teacher or you-- to pay attention to him. Depending on what happens after he pushes or distracts, it could even be his way of getting out of a situation that he finds aversive. To determine what is fuelling the behaviour you will have to find out what happens before he does what he does. And what happens afterwards.

To give an example, if the adult in the environment, which is you or the teacher, scolds him after he pushes, then maybe this attention could be the reason for the behaviour. Or if the teacher excludes him from the activity as a punishment, (and supposing your son does not like that activity!), then he would push more often as a way of getting out of the activity. So you will need to do some observation to understand your son’s behaviours. You would also then know what to do to change them. But a simple rule of thumb that you can follow is to “catch him being good.” Simply put, when your son is sitting quietly, flipping a paper, or maybe rocking to himself, most people would just ignore him. But the minute he pushes someone, he ends up with a production! Try and reverse this. For instance, your son pushes other children. When he does that I am sure he generates a lot of reaction. Reverse that. When he is NOT pushing, just sitting in his place then tell him, .Great sitting.. If he is pushing a car back and forth you could say: ‘Playing with the car!’ or ‘Red car!’ And when he pushes, try to not pay him any attention. Instead attend to the child who has been pushed. Give the pushed child a hug maybe. Simultaneously, the pushing could simply be your son’s way of trying to play with the other children.

Having a PDD, he would have an impaired understanding of play and not know what to do with another child. So teach him to play. It could be something as simple as greeting each other every morning, and saying goodbye. Or rolling a car back and forth between the two children. The difficulty with getting into the bus could again be for a variety of reasons. A possible one could be a difficulty in dealing with transition. Transition times are difficult for children on the spectrum. His teacher could prepare him by telling him ten minutes before school gets over. She could show him a picture of the bus and point to a timer. Or simply a bell. She could say, ‘The bell will go in ten minutes, and X will get into the bus’ (showing him the picture of the bus). When the bell goes she can hand the card to him and lead him to the bus.

Q. This is regarding my seven-year-old son. He has autism and he attends a mainstream school. He insists on sitting with one particular girl and wants to be with her all the time. She gets very upset about it and her parents have also complained to the school about this behaviour. Please give some suggestions.

A. The situation perhaps arises because your son is most comfortable around his classmate and therefore only wants to sit with her. Your son perhaps has difficulty in interacting with his peer group and the girl is someone he has decided is the most comfortable one to sit with. He now feels much in control of the social environment and is secure with her. Having done that, it is possible that due to the impairment in social skills and his difficulty in reading social messages, he is not able to differentiate when she wants to interact with him and when she wants to be left alone. As a result she perhaps finds his proximity intrusive and therefore gets upset. It could even be a nonfunctional routine or ritual. So in addressing this situation we will have to keep the needs of both the children in mind. It may be helpful if your son is given very clear instructions as to .when. and .how long. he can sit with his classmate. Initially, they could perhaps sit together for two consecutive classes. After this another child could be made to sit between them. When your son sits away from the girl, his behaviour could be reinforced. Gradually the sitting away time could be increased. However, you son will have to be prepared for this development. One of the ways you could do this would be by writing or drawing a simple social story. For more information on social stories you could visit our website www.autism-india.org.

Given below is one example of a social story you can use with changes and improvements as you think fit. Read it out to him two to three times in a day for a week or so.

I sit in my class in school.
All children have their own seats in the class.
I may want to sit with Sonali every day.
My teacher wants me to sit with other children also.
My teacher is happy when I sit with other children.
It is OK to sit with other children.
I can try to sit with other children.
On Wednesday and Friday I can choose who I want to sit with.

If your son's school is open to suggestions, his classmate could also be supported to view your son's behaviours differently, and to actually actively buddy him when he sits with her, and in time, at other times during the day as well. However if his little classmate does not want to sit with him as a result of negative feedback she has picked up from her family, about disability and autism and about him, as often happens, then it is the little girl's family who really need help in order to help them view the world from a more positive perspective!!!

Q. My daughter always touches every one in the house and also some times people at her school. She sometimes bites at home, pinches, repeats utterances, and makes faces. Also she does not know how to react with her peers. She likes to talk like someone a lot older than her.

A. We would suggest that you start with just one or two difficulties that you would like to target as a priority. Perhaps you might like to work on those behaviours that are either causing injury to your child or other people, or that are coming in the way of your child’s direct learning time. For eg.if pinching or biting other children at school is your primary concern, you could try behaviour modification techniques. This would be finding out through observation why the pinching is taking place, for e.g., is it a sensory need or is it to get attention of other people, to access an activity or object, or to escape from the situation?

Accordingly deal with the behaviour. e.g., if you feel it is to get attention, do not pay undue attention to the behaviour, and rather pay attention to the child who has been pinched. Keep yourself neutral and comfortable within the situation and do not talk about what happened and do not say ‘no’ or ‘don’t’ etc. Instead, when your child is behaving appropriately, praise and acknowledge that behaviour.

At another time (when the behaviour is not occurring) you can facilitate social interaction with another child by taking your child’s hand and helping her say hello, take turns on a game, and so on. All this while you may need to remain focussed to ensure no inappropriate behaviours happen during this time. If the behaviour is a sensory need, fulfill that need during another time by structuring it into her daily routine or schedule.

You could also try preparing your child with visual cues about what is going to happen in school or at the park and talk about the situation. However, make sure you do not use words like ‘we must say hello’ and so on. Instead, keep language positive and use language like ‘we can try to stay smart’, etc. Social Stories are another technique you could try if your child is ready for them. Going through all the steps of a social story is beyond the scope of this column but a book like ‘Social Stories’ by Carol Gray would help. You could also see ‘Social Stories’ in previous issues of Autism Network

Finally, behaviours like making faces and repeating are all a part of the difficulty in social understanding and inflexibility in thought and behaviour associated with having a diagnosis of Autism. It may be useful to focus on what your child is already doing well, and use her strengths to teach her more skills. For example if she repeats words or sentences, put it in context for her and make it meaningful. You can also model appropriate language for her to copy in a social situation.

Q. My autistic grand daughter is 10 yrs old. She attends regular school in Standard Three. Of late her hyperactive behaviour in school has increased a lot and is causing concern to all of us. There is nobody in the school who can keep a watch on her throughout the school hours to prevent this behaviour. The school has no full time Special Educator or Counsellor, and as such the teacher tries to manage her abnormal behaviour whichever best way she can.

My grand daughter attends therapy sessions with the special educator on three days and with a behavioural therapist on two days. She destroys the pictures that are stuck on the wall, or sometimes she throws her tiffin on the floor. She sometimes continues to laugh for a long time or sometimes bursts out crying for no reason. Academically she is very good. She scored 78% marks in the unit test with excellent remarks. Can you offer us some remedial measures which will effectively control her abnormal behaviour?

A. Your grand daughter seems to be managing well with the academics as many other children with autism but she appears to have other difficulties in coping with the school situation. Very often these difficulties can act as triggers for challenging behaviors.

One needs to find out what happens before she resorts to tearing paper displayed on the walls or laughing, when these behaviours happen, whether they occur with different teachers or with the same teacher. Similarly it is important to know what the teachers do when she exhibits these behaviors. If despite the intervention behaviors are increasing as mentioned by you then it is very clear that even though her school may be trying its best to support her and deal with the challenging situations, the strategies are not working to reduce the behaviors.

It is rather difficult to comment on the possible reasons and give suggestions without having answers to the situations referred to above. However we can suggest a few things that can be tried out. But most crucially it is important to remember that your grand daughter has autism. Her apparent skills often make us expect far more from her than she is capable of.

In addition, your grand daughter is ten years old and is entering adolescence. For her this is a new phase of life in which she may be confused with her own bodily changes and also the awareness of being different from other children may be setting in gradually. Therefore the family needs to have a lot of patience and acceptance and a positive attitude. We find that families are generally aware of this and surely you may be having the same approach.

Provide her with an environment that is predictable and prepare her about changes if and when they happen. For example in case of a change in the timetable talk about it in advance. Tell her clearly and specifically about the change. Your grand daughter has autism. Despite her communication skills she may not be able to ask ‘Why are we not taking out our Math book in the Math period,’ and get confused and stressed about it.

Try and keep instructions to her brief, precise, and concrete. Do not assume she will follow an instruction that has been given in general to the entire class. The teacher may have to take your grand daughter's name, pause to get her attention, and then repeat the instruction. For example if the teacher has told the class, ‘Take out your work books and give them to the class monitor’; she may have to address your grand daughter by her name: ‘Shweta, take out your English workbook from your bag. Now give it to Shalini’.

You can practice having your grand daughter learn to pay attention in a group at home, where the mother says, “Everyone, come for dinner”.

Classrooms have a lot of distractions that can be problematic for a child with autism. Teach her to deal with these at home. Expect her to complete her task or follow instructions with the TV or music on. Contrive interruptions that she has to work around.

State clearly what is expected of her. Be concrete. Say and give the child time to process your instruction in her mind and then carry it through. Avoid verbal overload. Too many instructions may be confusing.

Your grand daughter has to be helped to see that when she does NOT tear paper she gets praise and attention. Catch her when she is good and by and large do not provide too much attention for inappropriate behaviours.

During times like the tiffin time a lot of interactions take place between children and obviously she has difficulties in interacting with her peer group. Therefore she may throw her tiffin in order to either get attention of others or out of confusion. She needs to know what she can do during recess. Assign an area for eating that is quiet and she is in the company of very known and preferred kids. Give her clear indication of what she can do after she has had her tiffin and still has time before the next class starts.

Q. My son P is 5 years old with mild traces of autism. He holds something or other in his hands most of the time, which he flips. His teacher for special needs says it is due to sensory needs particularly in the palms and his feet. When we go to park he likes to wear others slippers and sandals. Can you please give some suggestions?

A. The behaviours you have described may be for tactile as well as visual stimulation. Telling him to stop the behaviours would not be very helpful. Rather providing him with the stimulation he requires as a part of his daily activities will actually help devease self-stimulatory behaviours.

Rub his hands and soles of his feet with different and alternating textures like plastic scrubbers, silk fabric, scotchbrite, velvet, fine sandpaper, cotton wool. Do this with firm and deep strokes. You can make a mat from squares of different textures like sponge, small pebbles, bubble wrap, scotchbrite, sand, for him to walk on or feel with his hands. Toys that have give off flashing or blinking lights at the press of a button could provide visual stimulation.

When he is otherwise unoccupied or has not been taught to occupy himself, and everyone else is busy, he can flip objects if that is the only way he can occupy himself. Regarding wearing other people's slippers, what we do will depend on why he wears others slippers. One reason could be that he has difficulty distinguishing his own slippers then he could be taught to distinguish them with some identifying mark on his own slippers. When he puts on other's footwear he could be told "These are XYZ's slippers. P will wear his own slippers." Encourage him to wear his own slippers at own as well.

Q. We are members of AFA based at Mumbai. I have some queries regarding the development of our autistic child D who is four and a half. My son is echolalic but does not take any initiative to speak using a variety of words. He utters the same one or two words such as 'papi' (pan i- water ) and 'tote' (means chocolate) for all his needs . He has been receiving speech therapy daily for the last one and a half years.

He was fully toilet trained and used to pull us to the toilet with an indicative word like 'susu.' At present he is back to his untrained period and often urinates at any place. He is fully aware of his mischief which he indicates either by shying away or by babbling his protest.

He attends nursery with one-to-one teacher attention and with his mother present. Recently his attention deficit and the impatient behavior have increased a lot. He is unwilling to sit in the class. His unwillingness to follow instructions often leads to a physical attack on the teacher or his mother such as hitting or pulling their hair. This behaviour was not at all there three months back. We try to calm him down by explaining the situation but he rarely responds to the same. His emotional imbalance is also on the rise. We seek remedy for the above.

A. I am sure you have informed yourself about the ways autism affects an individual. One of these is the different ways from the norm that language develops as well as the persisting difficulties. So while many typically developing children go though a period when they echo speech, in children with autism echoing persists beyond age three when it typically stops. In addition children with autism do not merely have a limited vocabulary, rather there are difficulties with understanding of language, with phonetics, with the rules of communication. It is almost as though they do not understand the purpose of language and how the rules of communication work. There are not just difficulties in communicating but also difficulties in processing and understanding communication.

Explaining things the way we do with regular children does not work with most children with autism. In fact such explanations of why a behaviour is bad or good and therefore etc only adds to the child's frustration. It is difficult for me to say why exactly D exhibits the behaviours he does during one on one. But if I had to make a guess I would say that what you are seeing in your child is not so much emotional imbalance as frustration in not understanding what is expected of him and not in not being able to convey his wants. It would help to try and understand why D does not want to sit. Why does he not want to attend to the task? Is it too easy? Too difficult? Are the instructions too confusing? Is there clarity and consistency of communication with D? Training yourself is of course the ideal situation.

Q. I am from Pakistan, father of A. A is four and a half years old with a mental age of two to three years. His problem is that he is hyperactive. Please let me know what type of help can be provided to cure A.

A. We do not know of a Pakistan National Autism Society as of yet, although we are hopeful that one will begin. We have had families from Pakistan attend our training workshops, which occur each year in September or October, and we have also heard of families in Pakistan organizing some programs themselves. Are you in touch with any other families in Pakistan? Would that be helpful information for you to have? As you may have learned there is no cure for autism, so we cannot provide you with that information. However, early intervention is the best known approach to overall improvement as well as for improvement for hyperactivity.

Q. Our four and half year old boy D has echolalia. He repeatedly utters one or two words like 'papi,' or 'tote,' but not otherwise speak. He has been receiving speech therapy daily since the last one and a half years.He was fully toilet trained and used to indicate his need by
pulling us and saying 'susu.' But now he urinates at any place. He indicates his mischief by shying away and babbling.

We live in Mumbai where D attends a nursery school with one to one teacher attention and where his mother is also present. Recently the attention deficit and the impatient behavior have increased a lot. D is unwilling to sit in the class and follow instructions. When one insists it often leads to physical attack on the teacher or his mother like hitting and pulling the hair. This behaviour was not at all there even three months back. When he behaves like this we try to calm him down by explaining the situation but it does not seem to work. Emotional disbalance is also on the rise

We seek advice for his violent behaviour. Can D's parents train at AFA on how to handle D?

A. I am sure you have informed yourself about the ways autism affects an individual. One of these is the different ways from the norm that language develops as well as the persisting difficulties. So while many typically developing children go though a period when they echo speech, in children with autism echoing persists beyond age three when it typically stops. In addition children with autism do not merely have a limited vocabulary, rather there are difficulties with the understanding of language, with phonetics, with the rules of communication. It is almost as though they do not understand the purpose of language and how the rules of communication work. There are also difficulties in processing and understanding communication. The speech therapy D receives will have to be more oriented towards teaching him communication rather than focussing onarticulation.

Explaining things the way we do with regular children may not work with children with autism. In fact such explanations of why a behaviour is good, or bad, and so on, only adds to the child's frustration. It is difficult for me to say why exactly D exhibits the behaviours he does during one on one. But if I had to make a guess I would say that what you are seeing in your child is not so much emotional imbalance as frustration at not understanding what is expected of him and in not being able to convey his wants.

It would help to try and understand why D does not want to sit. Why he does not want to attend to the task. Is the task too easy? Too difficult? Are the instructions too confusing? Is there clarity and consistency of communication with D?

Regarding the renewed toileting accidents, we want to check out a number of things. Has there been a change in the environment? What happens before a toilet accident. What happens after? When do accidents usually happen? With whom? This will help us ascertain whether toilet accidents are due to sensory issues, control issues, a behaviour that has been inadvertently reinforced, and so on. However in the meantime you could try and put D on a toilet schedule.

For instance if he wets himself after approximately every two hours, then take him to the toilet after every one hour and 45 minutes. If he urinates in the pot, point to the urine in the pot and praise him. You may even give him a small reinforcer, which could be a candy, or
a string, or whatever D likes. On the other hand when D wets himself is he reprimanded? Sometimes a reprimand can act as a reinforcer for a child. If that be the case you want to stop reprimanding D for toilet accidents while you maintain the toilet schedule.

Training yourself would of course be very helpful. You could indeed receive training at Action For Autism. This could be a week-long programming for your home, or it could be a three month Mother-child training programme. You could also benefit from attending our four-day training workshops in October.

Q. My son six-and-a-half years old is suspected to have mild autism and he is also hyperactive and has behavior problems. For this he is going to special education and speech therapy center. His speech was delayed: he used to speak only two to three words but nowadays he is trying to speak sentences. He is able to sing songs, rhymes, stories, TV and Radio jingles. He is academically good and can write A to Z both small and big letters, names of fruits and vegetables, name colours, days of the week, months animals, body parts. He can give his address, his own name, father's and mother's name, and his telephone number. He can count from 1 to 100, say the tables from two to four, and identify 15 international flags.

But he has a problem which we don't know how to solve: since childhood he will have any two plastic things of same size and shape in his two hands. When he was small we had no problem. But when he started going to school we started facing a problem. We have consulted a doctor who prescribed Fludac Syrup for two months. But even then he is carrying the plastic things in his hand. Due to this he is losing his concentration. Kindly advise us what to do to make him forget this habit.

A. We have gone through your letter and have tried to understand the function behind the particular behavior mentioned by you. However it is difficult to analyse the behaviour and give suggestions based on the letter. We will try and respond as best as we can based on the information you have provided.

Your son appears to have learnt various concepts at an early age. According to the information you provide his behaviour of holding objects in his hand has been there for quite sometime. However the behavior does not appear to have interfered in his learning. The difficulty now arises because he is going to school.

You can work towards helping him to stay comfortable without the objects while he is in school. Trying to stop this behaviour suddenly may not work. Instead, let him hold the objects some times. Since he obviously loves holding these objects in this hand you can use them instead as reinforcer for completing tasks given to him. For example, take the objects from him and make him do a task that is simple and easy for him, like clap hands two times, or finish eating one biscuit, and then he can get the objects. If he cries or tantrums do not give them back. Make him complete the task before you give them. If you anticipate that he may 'tantrum', ensure that the task is very short. In this way he learns to stay without the objects for a short time. Gradually increase the time that he stays without the objects.

You can also talk to his teachers and use these objects as rewards for completing his work in class. At the beginning of class he can be encouraged to hand the objects over to the teacher. He will have to be told very clearly that the teacher has the objects and when he completes his work he can have them. In this way in the beginning of the class he gives them to the teacher and gets them on completing his task.

When he goes out for a walk with you, or goes to a park, give him something else to carry that is more appropriate. Like a ball or a shopping bag.

His carrying objects around may have a sensory basis as well. So when he is at home with you and you have some free time, rub different textures: soft, rough, silky, woolly, etc on his palms. You can also use brushes, lotions, talcum powder, a rolling pin (belan) on the palms.

Q. Teachers want me to prevent F from playing with strings. Initially, sometimes they used to snatch the string away from him as soon as he entered school and he cried the whole day. However a new behaviour, i.e. mouthing and licking has started. Is the new behaviour the result of the suppression?

A. It is very difficult for me to say why the mouthing and licking has started without having a background to the situation. Behaviours do not happen in isolation. So it would not be fair to F, you, or the school to comment without having more information. Incidentally, F's fascination with strings is something that could actually be used to motivate him to learn

Q. My job is a teacher assistant for an autism student in a local private school in Indonesia. Here autism is not well understood. I have access to little information about it and so I have a problem in handling my student. This student is six years old. I have been handling him for over a year now.

When I first met him I had no clue on how to handle him but my old boss convinced me and trained me to handle him. But now she is not here anymore and the new teacher does not know how to treat him either. This student will be put out from school if he does not make any progress in the class. I better tell you about his situation from the first time I met him - until recently. The first month of my work he could not speak properly and was always hiding under the table every time I got near him. But I approached him gently and non-intrusively.

By last December he could talk to his friend and express his feelings. He can also read some words like I, am, cat, dog, see, is, in, on, Mom, Dad, James. He is really good in maths. But when he came back from the X-Mas holiday, he seems to have regressed to like when the first time he met me. Maybe even worse now as he is even hitting and yelling at me which he had never done before. I really need your help. I do not want him to be put out of school. I need your advice to make him like before he had a holiday. For your information his Mom is now pregnant. Do you think it has anything to do with it ?

A. By Dennis Debbaudt* and AFA:
First of all thank you for choosing to work with our sons and daughters who have autism. I wish there were millions more people out there like you. You had a sensitive and knowledgeable senior and it must be difficult to not have her support and advise any longer. Your gentle and non-threatening approach - for instance when he was under the table got the child to trust in you. His changed behaviour after the break can seem very confusing.

It might be that he lost some of his skills during the holiday break because he did not have a chance to practice them. Sometimes children with autism do appear to lose some skills when they are away from the school (or any familiar structured environment) for even short periods of time. Many children with autism in the U.S. attend school year round in order to address this erosion - or apparent loss of skills.

Maybe he needed more preparation for the Christmas break. Most children with autism require predictability. They often have difficulty dealing with unexpected changes. It is possible that before the break he perceived you as a steady part of his environment. Then suddenly you were not there and he was confused. Now that you are back he does not know how long you will be there for and if you will again suddenly disappear. Changes can be very hard for our kids since they do not have the skills to ask what is happening.

It could also be that he was having so much fun during the holiday that he acted out when he got back to school. Or it could mean that something bothered him over the X-Mas break and he is reacting to that. It could be something entirely different - medicine, diet, other illness - or many other factors. I would not want to speculate about his intentions or behaviors without speaking at length with his mom and family. It would be hard to know if the fact that his mother is now pregnant is bothering him. It might. For instance if that has led to a lot of changes at home in anticipation of the new arrival. In any event it would be worthwhile to prepare him for the new arrival, by talking to him about the sibling he will have shortly, in a very concrete manner. Maybe a calendar could be used to mark the expected date of birth, and the days marked as they pass. In addition his mother could sometimes rock a doll or hold a doll close - along with your student.

Also we (DD and family) learned early on to act as if our son could hear, see and understand everything - we assumed he could make meaning out of his environment. While these would prepare him for changes your immediate concern must be more to do with how to deal with the current situation. You are doing the right thing by investigating what the possibilities might be. What you are doing is also known as a functional behavioral analysis. The hitting and yelling could be due to any number of reasons. So do a functional analysis without making any assumptions.

Take notes, try to remember what he was doing just before a negative behavior started - to determine what the cause may be - remove things from his sensory diet, if necessary, to determine if it is his sensory environment that is causing the negative behavior. This could include lighting, sounds, smells, touch, fabrics, tastes. Keeping a written log will help you figure out a way to deal with things. You can spot trends easier. Perhaps send the log home each day so his mom can add her comments and information. Keep it simple and informal. Also, while the hitting or yelling happens, do not give the behaviour any immediate attention.

Since as you are aware most of our kids have significant impairment of social skills, they have difficulty in drawing attention to themselves and their needs. So when they get any form of attention - and that would include scolding for behaviours they might exhibit - they often repeat the behaviour in order to get the attention again. So when he is hitting, while you ensure you do not get hit again, do not pay the behaviour attention. Stay comfortable and non-reactive. At the same time 'catch him being good'. So when he is being calm and happy tell him how much you like it when he is being gentle. Rather than commenting that "I don't like it when you hit" or "I don't like it when you shout" use positive terminology!

Good wishes in helping this child and his family and for the committed job you are doing.

*Dennis Debbaudt is a parent, a resource person, and founder of 'Autism Information for Police' for which he gives conference presentations and direct trainings, as well as a friend of Action For Autism.

Q. My son M is chewing the neckline of his shirt I am ignoring it. Is there anything else I should do?

A. I understand from the information in your letter that M is chewing his garment to satisfy a sensory need. I think you want to try working ondesensitizing. Try the following and see if it works for him.

Give M the following things to chew:
o a rubber tube o soup sticks o cake and milk rusks
o plain grains of wheat that have been coarsely crushed mixed with a sprinkle of water. This makes it of a chewy consistency.

With a piece of thin towel or other fabric wrapped around your finger, try to massage his tongue and gums. To help him accept the massage you could flavour the fabric with fruit flavours or any other flavour of the child's liking. In addition, in the summers get him to wear vests with very low necklines.

Q. Whenever we do an activity with toys, my son throws them. How to stop this?

A. To get around the throwing of toys when you are trying to do an activity there are a number of things you could try: Prepare him for the activity. Structure the worktable so that he cannot throw. Reduce clutter and keep exactly what you will use on the table. Structure the activity so he knows exactly what is to happen, how much, what will happen, when it will end. If he does manage to chuck something despite all this, do not give the behaviour a reaction. Instead catch him being good. Which means that if you get through an activity without him having thrown anything, then acknowledge, praise, reward.

Q. On our road we have a family whose son is suffering from Autism. To us, autism was not known but his father made us aware of it and ever since I have been reading about this with a view to helping, as much as I can. I would like to give you my observations of the child seeking, thereby, your guidance to know how to deal with such children. This eight year old boy called P is 'jumpy', he cannot stay still for a moment and neither can he be held down. It's just running and jumping about. Yet, if he is held down and is asked to read something, be it English or Gujarati, he just looks at the sentence in a flash, turns his head away and says the correct sentence out aloud , difficult though it may be. It's just amazing!

Another observation is that whatever he gets his hands on he bangs hard and is ready to break it up to see what is beneath or within it. Any new room, unknown to him, as is our place that he is just coming into, seems to invite discovery, but, he just gives a quick glance around in wonder and seems to take in, again in flash, all that he has seen, and then he goes for one object to experiment with. He seems to recognise me, now that he has come here often, but except for the first moment that he gives a smile of recognition, after that he is not bothered about my presence and prefers his freedom of running about. I am sending these observations with the hope that we will all be able to bring out the best in the child.

A. It was a pleasure to read your letter. Your concern for the child in your neighbourhood, your ability to pick out his strengths and look at him so positively, not letting his challenging behaviours get in the way of your seeing him as a child with possibilities and your initiative and proactiveness in doing all you can to help him grow is truly heartwarming. We would feel very privileged to help you in any way we can.

Autism as you may know is a developmental disorder, affecting the communication and social skills of a child. Unlike mental retardation, children with autism typically show an uneven profile of skill levels, that can vary greatly from child to child. P seems to have excellent cognitive skills, given that he has learnt to read so early, and probably has very good spatial skills. However as you have noted he has great difficulty in even the most basic social interactions. This is his challenge, and the area he needs the most help in.

Like all of us, P will learn best in a positive encouraging environment, structured to his needs, and using his strengths and interest areas. Praise and encourage even the smallest efforts in those skills that you want him to become stronger in, and ignore or pay very low attention to behaviours that you want to discourage.

So when greeting him, bring yourself to his eye level, or bring objects that he is interested in close to your eyes, and the moment you get eye contact, tell him very enthusiastically how much you love it when he looks into your eyes. Be different and exciting every time. You could model an appropriate greeting as well. When you want to have focussed interaction with him, try and structure the environment - so that there are not many distractions around, and it is easy for you to get him to look at you, and pay attention to you. So keep the table empty of everything but the book or toy you want to share with him, have him seated against a wall maybe, make sure there aren't objects around that he would rather be exploring.

If you plan to work with him regularly, you could maybe ask his parents to set aside a room that is structured in this manner. A big mirror to encourage body awareness, imitation skills and increase opportunities for eye contact, a high shelf to keep things that you want him to ask you for, perhaps a table and chair and neutral uncluttered walls and floor would be helpful.

Q. Whenever I go out of sight my son cries. If I am in the kitchen he calls ‘Amma’, ‘Amma’, repeating the word even for half an hour. When I am with him he is quiet.  My brother-in-law’s three-year-old son tries to play with him, but my son is not playing with him. He should play with other children.  He should avoid repeatedly doing the same actions like swinging towels and clothes.  His has to learn more things.

Q. My child has the behavior of hand-flapping.

A. Children with Autism are over sensitive or under sensitive in at least one of the senses (hearing, vision, touch, smell, taste, body balance) at any given time. Stereotypic movements like rocking or hand flapping are a way of coping with these difficulties. Stopping a child from doing them is not helpful as these behaviours often provide comfort. Instead, at a time when he is not flapping his hands, give him relaxing exercises like pressing his body gently (or even very hard if that is what he prefers. These movements will also reduce once your son has a routine for his day, like going to a school, and when he is taught other ways of occupying himself.

A. You have mentioned that he cries every time you are out of sight and quietens when you are around. Very often we assume that autistic children are not really bothered about what goes on around them. In fact, the reason why he cries is probably because he sees you are gone and is stressed about it. His communication difficulty hinders him from asking where you are going, why you are going, how long you’ll be away, etc. as a regular child would do. That is why it becomes very important to talk to your son and prepare him for everything that is going to happen. If you have to go to the shop, explain it to him. Keep your explanation very simple and clear. You will find that this will reduce his stress to a great extent. If it so happens that you tell him you are going away for an hour and you take longer, just remember to talk to him about the delay when you get back.

Also remember that crying and repeating “Amma” over and over is S’s  way of communicating with you. What you can do is provide him with the appropriate words or gestures to use. Right now he does not know of any alternative way of communicating with you. When he cries ‘Amma’ in order to have you come to him or attend to him in any other way, you can say “Amma come here”, or “Amma give food” before responding to it. This way he learns the appropriate language in the appropriate situation.

Play is a very complex social skill that autistic people find very difficult to deal with. Their impaired imagination makes it even more difficult for them to understand pretend games and unwritten rules. That is why autistic people ‘work’ much better than they ‘play’. When a game is organised and methodical they are much better able to understand what is expected of them. To start with you can use simple card games such as making pairs of the same  picture, building blocks, fitting puzzles, etc. to build on his play. Take turns with him so that he learns the skill of taking turns and waiting for his turn. Play a lot of pretend games with him even if they are childlike. They will help him to use his imagination. If possible, teach him to ride a bike, swim, play badminton, etc. - anything that he can do alongside other children without the pressure of interacting or figuring out social rules.

When your son is not occupied by you or any other member of the family in an activity, then he will indulge in various obsessive activities to keep himself occupied: such as swinging a towel. Unlike other children he is unable to occupy himself in a manner that would be considered socially appropriate. You mention that at home he spends a lot of time lying on the floor on a mattress and pillow. Perhaps you could set up a schedule of activities during the day. When he returns from school and after he has rested a bit involve him in certain household activities. Perhaps he could bring in the washing; help you to lay out lunch; help family members in making the bed. Help in making the bed could, to start with, be something as simple as S standing there holding the pillows while you straightened and tucked in the sheets. . All these jobs you will perhaps be able to do far quicker without his help. You could just as easily put the pillows on a chair instead of having S hold them.. But the idea is to involve him and get him connected versus staying lost in his own world.  The more you can involve him and the more he enjoys it the less opportunity he will have to indulge in ‘towel-swinging’. Telling him, ‘S stop that’ might  stop the behaviour for the moment but will not help in either reducing or eliminating it.
Even better would be if you could enlist his teachers’ help to set up structured activities for S in the house.

It is really good that he is attending a school where he can learn some academic skills. More important, however, is for him to learn to take care of his day to day needs. It is good for a child to know 200 and 35 is  235 but it is more helpful if he learns to pour himself a glass of water or  know how to ask for help.

Q. I have been facing a lot of problems with my daughter, age 9 years.  Her physical growth has started. (It is earlier than other children of her age.) She has become very moody and throws a lot of tantrums.  In between she was ill for 15 days during which she was given an antibiotic course for ten days.  During that period she wouldn't have her bath, wouldn't let us comb her hair, and would scream in general at everyone.  I find myself helpless at such times when no amount of explanation or tempting can make her have her bath or comb her hair, even when going out.  Even after her illness, she doesn't want to have her bath and comb her hair on holidays.

Another problem I face with her is that she is very negative towards me.  She will say, " Mummy, you don't give me milk, let the servant give me the milk." Whenever she is upset she goes on repeating, "Mummy, you go away." Formerly she was very fond of going out.  These days she is all ready to go out, but at the last moment she will say that she wants to go out alone and not with everyone.  Please suggest ways to handle the above behaviours.

A.  Your letter describes a situation that many families with teenagers and children going through puberty face.  As you must be aware, any regular child at this age begins to look for areas of control; situations in which they can have their own way.  Many children also have difficulties in behaviour and management.  It seems to me that what you describe is quite clearly your daughter's desire for control over her world.

Right now, more than at any other time, your daughter is finding it very difficult to understand the puberty-related changes in her body and the accompanying see-saw of emotions.  Every person goes through phases of being up and down and these phases are marked in people with autism.  M cannot control these changes and the way they affect her, and so she needs to find some areas of control.  If you recall, at the training workshop it would have been discussed how control over one's own body is the ultimate control that no one can take away.  What M is doing is essentially exercising this control.  If she does not bathe, or does not want to brush her hair, this is after all her way of asserting control, and maybe we could accept that.  Also, like many people with autism who periodically go through phases of heightened sensitivity, brushing her hair or bathing mighehave been painful at that point of time.  If we can let her have her way, with comfort, she will be much more willing to revert back to doing what you want her to do.

In another instance she keeps saying she wants to go out, and when you are finally ready to do so, she says no.  She is basically looking to see what you are going to do, i.e. if you will go against her.  Most often what we tend to do is to react with, "What?  You said you wanted to go out!  Now we are ready, so we have to go".  What you could do, is be prepared for her to say 'no' and if she does, then say "Okay, that's alright, we'll stay back", and go back in; or say "That's okay if you don't want to come.  I think I will go out anyway".  The more you can be comfortable about her wants, the easier she will be to deal with.  M's behaviour is akin to that of most pre-teens and teens.  The difference is that non-autistic youngsters have social skills and therefore keen to have the approbation of others.  This does not apply to someone with autism.

M is slowly moving into her teens and she is going to want a lot more privacy and personal space, so if at times she asks to go out alone, maybe she is actually wanting some time alone (which is something we all want at some time or another).  We realize that sending her out on her own may not be a safe possibility, so you can provide her an alternate place and time where she can be undisturbed, a place she can be alone.  This is not something personal against you, it is just a normal part of her growth.  Perhaps the most important thing to remember is that her behaviour is not directed against you even though it may appear to be.

This is a phase that can continue to ebb and flow through much of her teens as it does with every child; but it is also a phase that will eventually pass.  Please always remember that there is no one way of dealing with any situation.  You will need to find different ways of working around this negativity without going directly against her.

Q.  Amit uses bad language. He also does some obsessive talking.

Q.  Kundan is twelve. In class he talks constantly disturbing everyone. He will ask the teacher the same question over and over again even when he knows the answer.

Q.  Romit troubles me a lot. He will say  ‘Say chup-chup, say chup-chup.’ He will repeat many many times. He will say ‘Say blue car. Say blue car.’ He does this all the time. If I do not repeat after him he gets very agitated.

A.  Many children with autism, particularly those with better language skills appear to go through phases of obsessive talking. Perhaps they derive some kind of security out of getting a safe answer to a safe question.?! I think it was Temple Grandin who recounted how she enjoyed asking a question repeatedly and waiting with excited anticipation the very predictable reply. She adds that it never occurred to her how exasperating the entire exercise could be to those around her. What I want to first get out of the way is that the child is not asking the questions repeatedly to get your goat!  He simply wants to do it.

So what can we do about it?

The best time to actively deal with this is when the child is talking outside class, at break time, in the playground, or at home. Keeping in mind that the child perhaps wants to hold a conversation and does not know how, and therefore does repetitive talking - one method we have found useful is to talk ‘about’ or ‘around’ a favoured repetition.

For example if the child says ‘Say Chup-Chup.’
Carer : ‘Shall I say it loudly or softly?’
Child : ‘ Loudly’
Carer: ‘How many times will I say ‘chup-chup’?
Child :  ‘Three times’
Carer : ‘Chup - Chup. Chup-Chup. Chup-Chup.’
There can be endless variations to this.
Carer : ‘Shall  I say ‘Chup-chup’ to the dog  or shall I say ‘Chup-Chup’ to the mirror?’

When talking around a child’s obsession we want to be creative. We do not want to repeat the same conversation since tha t defeats the purpose. One can talk around just  about any subject the child perserverates about. All it wants is a bit of creativity.

The other method that might work is to completely ignore the perserevation. Pay no attention. Make absolutely no comment on the child’s talk - no matter how persistent. However, if I ignore nine times and the tenth time I am exasperated and acknowledge, - that will only strengthen the child’s resolve to persist till he gets a reply!

So (as we keep repeating!) as in everything else CONSISTENCY is of paramount importance: consistency and comfort.  If I create a conversational situation out of his perservation, I too want to enjoy it as much as the child.  When I want to help my child deal with a behaviour and I am angry about it, it reduces the chance of success. I have to be comfortable about whichever method I choose to deal with the behaviour. The same consistency and sense of comfort must operate in dealing with ‘bad language’.

Do not react. Give the bad language no power. Let it pass as another everyday comment. However this reaction has to come from every person in the environment for it to be definitely effective.

Q. I have a lot of difficulty with my son’s behaviour.  When we take him anywhere he runs away. He takes things from shops. It is very difficult. He is going to a school for mentally retarded. There are many children with autism also there. We  have meeting with teachers and  parent.  I tell the teachers about my sons problems. His teacher says he does not give problem at school. He only gives problem at home. Please guide us what we should do.

Q. Our son A is 13 years old and attends a special school. We are concerned that he does not sit for more than 10 minutes at home to do any activity. He runs out of the door if it is left open. We have shared this concern with the school but they said that he never does this there. Can you please advise?

A. It is very good that your son’s behaviour is appropriate in the school environment and that he sits for long periods and does not run away. Since his behaviour is different at home and you are concerned about it, I would suggest that you ask the school for suggestions on dealing with the behaviour at home. We have not seen your son and do not know him at all. On the other hand his school sees him everyday. Your child is attending a special school because he has special needs and since he spends several hours there every week they will know his behavours well. The school will want to provide a holistic education so explain to them the situation and ask for guidance.

Very often, with autistic people, a skill may not be generalised. A skill learnt at school may not automatically be exhibited at home, and vice versa. So the skill has to be taught in every environment to help generalisation. Learning and teaching is not limited to the school environment alone and A’s school will be happy to advise for the home. Ask his teachers what methods helped them deal with A’s behaviour at school and ask them for help to adapt the suggestions for the home.

If I may add a couple of points here: Firstly many parents have the feeling that they are somehow at fault when their child exhibits certain behaviours. No. Absolutely not. Parents are not born experts in behavioural techniques. Neither are professionals. Both have to learn. And it is the latter who must help the former. And actually in many situations parents naturally know the appropriate approach to take, better than many professionals.

Secondly, we often receive queries about behaviour at home that parents want to change and which they have been informed does not occur in the school. Don’t drop it there. Pursue it. Ask the school, why? Why does it not occur in the school. What is different? Though we are always happy to provide suggestions, those are far more general because often we do not know the child concerned, and each child is an individual with distinctive behaviours. In all such situations we suggest that parents approach the school for guidance first. It is the right of every parent to ask and the duty of each special needs school to guide in home management. Most schools are happy to help; so go ahead and ask.

Q.  My daughter hits her little brother, and other members of the family. She removes her clothes.

A.  To start with, it would be important for you to know a little about autism, so as to understand the REASONS why your daughter, may be doing, the things she does.  Now to your queries. There are many times when our children are throwing things around and shouting or hitting, and then there are times when they are sitting very calmly and nicely. Most often, we tend to ignore them, when they are quiet, and yell at them or tell them over and over again to 'stop', when they are exhibiting unwanted behavior. Now all children want attention. And if they get attention by kicking, and screaming then they are definitely, going to do that more. On the other hand, if you can be focused and aware to catch your child every time she is quiet or calm, and PRAISE her profusely, but IGNORE her anytime she does something you do not want, then these unwanted behavior will go away.

It is very important to remember to be very consistent and persistent. Stop saying 'No' to her completely, and make absolutely no comment about her acts at all even in reference to it later. If you ignore it a few times and give it attention a few times its not going to work. Consistency in every environment, by every person is important.  We realize this may be difficult for you at the start. We can assure you that it will be worth while.

Her desire to be without clothes, and hitting other children to make them cry, could also be attention getting behavior. Just be aware to remove the other child or grandparent, so they are not hurt an ignore her. These behaviors could also be due to sensory defensiveness. This is basically a hypersensitivity or lack of sensitivity of the senses (touch, taste, smell, hearing, sight). There is a possibility that she is very sensitive to the feel of certain fabrics, against her skin. Try on different types of fabrics, cottons, terrycots, polyesters etc., and tight or loose garments, pants or shorts, T-shirts or shirts and see which one she keeps on. If the reason of her sensitivity is tactile sensitivity then chances are she will keep on one of the kinds of garments/fabrics you try on her. If not and the reason is for attention, then praise every time, you see her with her garments on, and if she takes them of don't comment. After a few minutes, try to put it on again. If she puts it on PRAISE big. Keep doing this and there is every chance she will begin to wear her clothes again. Again you will need to phase it in - start with only one garment.

You've inquired about the 'Option Method'. Basically this approach involves a very accepting, non-judgmental happy attitude, by everyone around the person with the disability. We believe that autistic people can and do learn to be happy and content, which in turn helps them to cope with their disability, particularly if all around them learn to accept and understand their difficulties.

Auditory Integration therapy has been done with some autistic people. Of them, it has helped some and not helped some. No one can guarantee a positive change due to AIT at anytime. Right now there is noone in India who is trained, to perform the therapy. Mrs Saroj Madan was here earlier with Georgiana. The reason AIT helped Georgiana Stehli so much, was perhaps because her hearing sensitivity was very high and that was the main cause of a lot of her autistic behavior. But autism is a lifelong disability, and though AIT has helped her come so far as to lead a near normal life, she still has autism. She also still has other sensitivities such as her acute sense of smell, which she told us about on her visit here.

Q. Of late S does not like to do anything and keeps pacing and throwing things. He is especially moody in the evenings. Can you suggest anything for him?

A. S's phase of not wanting to do anything - you want to stay relaxed about that. Do not judge yourself as doing things inappropriately. These phases will keep coming and going. Be happy and avoid giving him the feeling that you are stressed about it. If he senses stress in your behaviour, he may use this kind of non-compliance for getting attention. What you want to do is to just relax, and think how you can do things differently. For example change teaching numbers into a physical activity. You could say - 'Let's jump two times in this circle'( a circle drawn on the floor). Since he likes to pace, join him in it and while doing it sing for him, Get your other son to join and let S feel that its okay with you. In fact in the evening give him control by telling him yourself 'Its time to walk' or pace.

You want to be relaxed about Sunny's phase of not wanting to do anything. Do not judge yourself as doing things inappropriately. These phases will keep coming and going. Be happy and avoid giving him the feeling that you are stressed about it. If he senses stress in your manner, he may use this kind of non-compliance for getting attention. What you want to do is to just relax, and think how you can do just do things differently. For example change teaching numbers into a physical activity. You could say "lets jump two times in this circle" (a circle you have drawn on the floor). Since he likes to pace join him in it and while doing it sing for him, get Bunny to join in and let Sunny feel that it's OK. with you. In fact, in the evenings give him control by saying yourself, "Its time to walk or pace". He will soon get out of this phase.

Q. Please give suggestions on improving my son's his behaviour.

A. As you are aware autism is a behavioural syndrome in which social and communication skills of a child are impaired. At times Prasanth may be expressing different feelings in a way that we find inappropriate i.e. happiness by clapping, stress by babbling or making particular sounds repeatedly. These are his ways of expressing himself and we need to respect that. At times these are also ways he has found to cope with a very confusing and socially demanding world. When we want him to stop (or we want to 'correct him') we actually want to take these coping strategies away from him.

A social skill that we take for granted is the ability to get another persons attention. Children with autism do not know how to get attention. They learn as they grow is that when they are sitting alone or quietly or doing their own thing, people may pay little or no attention to them but as soon as they do something like yell or jump or flap, they get an interesting reaction like a shout or a or a loud 'No. The behaviour is often discussed at great length and a whole lot of attention and importance given to it. For most children such behaviours are learned and reinforced by the reactions they get.

So if we want to eliminate these behaviours we want to catch the child sitting quiet and praise him for that. Completely ignore him when he is yelling. People in the environment need to be especially aware not to discuss behaviours in the child's presence because this too is attention to them.

Provide them with alternatives of behaviour. Most often we tell our children "Don't yell" or "Stop shouting" or "No! Don't talk loud". We tell them what not to do but not what to do. So give them alternatives. "Hands down," "Sit smartly." And whenever he is behaving as desired we want to praise positive . " Kept quiet…smart boy!" or "Being gentle when you touch…excellent!"

You want to remember that results will not show in a day or even in a week for some children. But remain persistent and consistent. The environment in its reactions also needs to be very consistent.

Q. How do you deal with a situation like this: a water bottle is not available in a public place like the market, hospital etc, and parents know that the child is not thirsty. He is fond of drinking water from a bottle; so he snatches or tries to snatch other people's water bottles.

A. This is a situation that many families face. If the child is not carrying a bottle and you are certain that he is not thirsty you can comfortably and firmly tell him his water is at home, and then wait to get home to give him water. You do not want to go out of your way to get your child water as soon as he asks for it especially since you know that he is not thirsty. Children learn very early to insist, if they know they will finally get what they want. If they know that making a fuss does not help, then they learn not to. If on occasion a decision is made to buy water, you want it to be clear that it is so because you want to and not because a fuss is being made in public. You want to tell him something like, "We are going to be out for another two hours and so we will buy some water today".

On the other hand perhaps we do not want to make an assumption about the child's thirst. It may not always be possible to tell whether a child is thirsty or not. A child may be genuinely thirsty even when we believe they should not be just because they may have had something to drink just before leaving home for instance; especially in the north of India where the summers are so dehydrating. We want to keep in mind that different people have different requirements of fluids. May be your son is genuinely thirsty and therefore tries to remove other people's water bottles? Due to the impairment in social skills the child may not see any reason not to take a bottle as long as it has water, regardless of who it belongs to. Perhaps you could allow/teach your child to carry a water bottle on outings. When he does reach for a bottle in public, you want to tell him, "that is that man's water, this is your water" (pointing to his own bottle) or just simply, "give the bottle back". Finally and most importantly, follow your instruction through.

Q. My daughter wears only one or two frocks daily, not turn by turn. She does not accept changes.

A. You have mentioned elsewhere too in your letter that your daughter is not comfortable dealing with changes. You want to, as far as possible, prepare her beforehand by talking about changes that are to happen. This will reassure her that things are not out of her control and help her to accept the changes.

This need for sameness might have something to do with her wanting to wear only the same one or two frocks every time. It might also be a sensory thing in the sense that the texture of the old well-washed garment might be what she finds acceptable.

You could try keeping two additional frocks in her cupboard. Talk to her about the new frocks: that they belong to her; that she would look very smart wearing them. Prepare her with the repetitions. Then one day ensure that when one set of her favourite clothes are in the wash she is wearing the other. When it is time to change, just tell her in a matter-of-fact tone that the clothes she has on will have to go for a wash and would only be ready for wear the next day. Then ask her to choose between her other two new frocks. There is a greater possibility that she would consent to wear one of the others if she were prepared like this.

Additionally, having a choice of two frocks increases the possibility of her wanting to choose one to wear. Once she does wear her new frock remember to acknowledge this change and tell her how splendid she looks.

Q. My daughter, age 8, generally does not want to come back from outside, other people's homes, friend's relatives or even from the market. She always cries, says, "don't want to go home, Stay outside". Any suggestions/ advise?

A. One of the reasons for this could be that she is really enjoying herself and does not want to go home, another could be that she does not get to go out enough. Either way, preparing her before hand is essential to reduce this behaviour. Before you leave for the outing, tell her where you are going, how long you will be there and where you will go next. Again begin to prepare her to return home about 15 minutes before you actually do so. While you are at the relatives home for instance, she could be told," We will finish our tea and then leave" or "You finish your game and then.... " Or if you are in the market, "We will buy the bread and dahi and then go home".

Yet another reason could be that she is not able to handle sudden changes. In our (social) lives, we do tend to make a lot of sudden decisions and chop and change our plans often. For example you are at a friends home and you get up to leave. Your friend says 'No, please sit for another ten minutes'. The ten minutes usually stretches for an extra five, and within that 1/2 hour the plan has changed three times, i.e. the expected thing has not happened. People with autism need some amount of predictability especially in unstructured social situations and preparing them before hand and sticking to the plan as far as possible really helps.

Back to top

Eye Contact

Q. My son has been diagnosed with autism at Hyderabad. Right now he has the feature of avoiding eye contact, and not responding to his name.

A. The behaviours you have queries about are common difficulties with children having Autism. It will be good to start working on these immediately.

Eye Contact: Making an eye contact can be very painful or just difficult for many persons with autism. However we can work on increasing eye contact. Sit with the child in such a way that your eyes are at his eye level. For example place your son on a chair while the adult sits on a low stool or cushion on the floor. Interact with him by doing things that he likes like singing, playing with a favoured toy while holding it between your and his eyes. Then for a sudden moment stop singing or remove the toy from your joint line of vision. There is a very good chance that this makes the child look at you. The moment he does so praise him big or acknowledge big saying something specific like "(daughter's name) gave me a look! Great looking!"
If we make ourselves very animated, very energetic, the child will be more interested in us and this too will help increase eye contact.

Not responding to name: Many a time our children 'hear' their names being called but have not learnt how to give a response, that is the social response, that means looking at the person who is calling. Start teaching the child to do so when you are in the same room. Call his name very clearly and slowly. Wait for a few seconds. If you get a look, praise the child. If not call out again and this time another person can gently turn the child's head to your direction.

Always have some kind of consequence for his response. Turning his head to look at you must never be a meaningless exercise. So when he looks at you, praise him and give him either a material reward like a food item, a favourite toy, or anything the child favours, or a social reward like a praise or a hug.

When you call your child try to vary your tone for example when calling out his name use a musical tone, another time a squeaky voice, or a whisper on another occasion. This will make him look at you with surprise! And of course remember to praise him once he looks at you.

Q. How do I improve G's eye-contact and response to his name?

A. To build on his eye-contact one of the things that you can do while working with him is to sit opposite him preferably at a lower level so he can look at you easily. Make yourself exciting and keep your expression animated and do things that are exciting for him, like blowing bubbles, tickling, playing with shiny wrappers. Remember to maintain the three Es - Energy, Excitement, and Enthusiasm, while working with him. Each time G looks at you praise him big and specific, "Shabash, look diya" or "Good Looking, G." When giving him an instruction if G is not looking at you get into his line of vision and then talk to him. Avoid turning his face physically to look at you…that can be perceived as force by him. If G is playing with a favoured toy or object pick up a similar one and do whatever he is doing. The chances of that catching his eye are pretty high. Always praise for a look even if it is for a brief second.

When you call his name, pause briefly for him to respond. It takes him a while to hear, process the information and then find the correct response. At times, G will respond quicker and at other times slower. This may happen because his focus is on something else. Vary your tone, request rather than command, whisper or sing, use squeaky and deep voices to get his attention.

Q. I am working in a special school as a special teacher. I have a student who is autistic. He is 22 years old. He has little bit of eye contact. He can listen, understand and obeys sometimes and does some type of sounds. I want to cultivate eye contact and slowly train him. Please give me hints or papers or something so that I can cultivate eye contact as earlyas possible for my student.

A. The young man you have written about, is he a new student at the school? Twenty two seems a bit late to start intervention. However, no age is too late! In helping the student the one important point you want to keep in mind is that you do not use force to teach. Force can mislead with short term gains but is totally ineffectual for long term learning apart from being a violation of the disabled person's rights.

Following on this, to improve eye contact you do not force the person to look at you. A few things you can do are:

1. Sit at a level that is slightly lower than the student so that you actually make it easier for him to make contact with your eyes.
2. When presenting something to him, like handing him a pen/pencil, hold the object at your combined eye level. What I mean is, if there were a straight line from your eye to his, hold the object on this line of gaze. This will create an opportunity for him to inadvertently look into your eyes when reaching for or looking at the object.
3. If the student is interested in an object, bring your face, and particularly eyes, within the line of gaze that is an extension of the line from his eye to the object of interest.
4. Where possible hold the object of interest up between your eyes as suggested above.
5. When making a request or giving an instruction, take the student's name, give a brief pause, and then complete the instruction. Try and lower yourself within eye gaze when doing this.
6. Whenever you get a look from the student, no matter how brief, be excited and acknowledge. We have to be really and genuinely excited in order for our true feelings to be communicated to the student with enough intensity in order to really enthuse him.
7. Most importantly, we want to keep in mind that the student will not improve eye contact because we want him to do so. Ultimately he himself must want to look in order for the strategy to succeed.

Now that the student is 22, perhaps you want to focus on teaching him to work independently and learn vocational skills. Perhaps he is doing so already?

Back to top

Self-help

Q. I am writing from Canada for a friend of mine. Her boyfriend has two autistic children and they look for some kind of information on how to teach them to put their shoes correctly on the left and right feet. If you have any kind of written instructions that may help them teach the children it would be very appreciated.

A. Ask your friend to put a sticker on the same foot of each pair. For instance a Mickey Mouse on the right shoe of each pair. If this does not work then try the following. Take a large sheet of paper and outline her daughter's feet on them. Next to the outline of one foot, say the right foot, place a small sticker of a Mickey Mouse or a red star. Put an identical sticker on all the right shoes of every pair. When she wears her shoe, place this paper on the floor and have her sit with her feet "matched" to the outline of her feet on the sheet, and then put the shoe on "matching" the stickers. Slowly reduce the size of the sticker and finally remove completely.

Q. Is it possible to teach behaviour control like toilet training, speech and language development through audio visual approach (VCR) or through computers? Do you have such video cassettes or discs for a child with autistic features and no speech so she could be taught to indicate desire for toilet?

A. You have asked an interesting question viz. - is it possible to teach behaviour control, toileting as well as speech and language through the use of videocassettes.

As you are aware, most persons with autism have styles of learning that are somewhat different from the non-autistic population. Often times they do not learn social and communicative behaviour through imitation and observation.

An effective method of teaching behaviours to individuals with autism is through specific responses to specific behaviours.

I am not clear from your letter whether you want video cassettes for use with the child, or by the parents. Our library has a video cassette called: "A family's visit". The cassette is of a BBC program about a family that in part illustrates a method of dealing with some basic behaviours such a "tantrumming". We are not allowed to make a copy of it, but it can be watched in the library. You may be able to obtain a copy from the Option Institute.

Regarding a video to teach communication to a non-verbal child I want to stress that it is crucial to work on developing the child's receptive and expressive communication skills regardless of whether a child has speech or not. In addition there are alternative modes of communication that may be taught.

For instance there is a methodology called Picture Exchange Communication System (PECS). Using PECS a child is taught to use word or picture 'cards' in order to communicate. Some children also use sign language, mostly makaton - a sign language developed in the U.K. Using modes of communication alternate to speech reinforces a child's communication skills and increases the possibility of the development of speech. Our library has a copy of the PECS teaching cassette. A copy of this may be obtained from the Delaware Autistic Program USA.

We are not aware of any cassettes for teaching toilet training. However, toilet skills can be taught with consistency and persistence. Please refer to Toilet Training: Vol IV No 3 (1997) and Learning to Wash after a Toilet Job: Vol VI No 1 (1999) of Autism Network.

Q.  My son cannot wear his clothes by himself, but can remove them very easily. If he gets angry he throws things around him, and often bangs the doors and window panes, or bangs his head on the door or window pane. Please give suggestions about his regular activities.

A.  Since your son is toilet-trained, and can undress himself, maybe you could now teach him to dress himself and bathe himself.  You could use the method of backward chaining. Start with the easiest garment to put on, like a pair of shorts. You help both his feet into the pants legs, and then help him to pull it up hand on hand. Your son seems to be able to follow instructions, so you could also put it on half-way and then give him short clean instructions "Pull up", "Higher", AND DON'T FORGET TO PRAISE!!

In a similar manner, you could teach him to bathe himself. It is summer now, and this is a good time to start. In the beginning, you will have to go through the initial bathing process and leave the last couple of mugs for him to pour. Again break down instructions into a short clear step by step process. "Dip mug", "Lift up", "Pour". The pouring may have to be done hand on hand, and usually means guiding and not doing it for him or forcing him into compliance.

As far as his behavior is concerned - you want to IGNORE unwanted behavior and PRAISE BIG - desired behaviors. So if he is angry and throws things, you want to a)IGNORE IT; b)Remove anything breakable from sight  and c) Remove him to another room. This must be done very, very comfortably, with as little attention and verbal input as possible.

You haven't mentioned whether he goes t school or not. But you could prepare a daily schedule for him anyway. Specify times and activities, keeping in mind, the various things he has to do, during the day, E.g. Wake Up; Brush Teeth; Bathe; Dress; Breakfast; School etc.  If he does not read, you could use small pictures to represent each activity like drawing a toothbrush, plate shirt etc. This will help him to feel more organized and comfortable. As each activity is completed, you can take it off the chart and tick off the word.

Q.  'Developing Appropriate Eating Habits' by Sandra Dawson is a useful article.  My son, Abhilash, 9 years old, used to eat only curd and rice until two years back.  Now he eats a variety of foods like chappatis, fish, chicken, etc.  But the problem is that he just swallows without chewing.  What he swallows is mostly preparations like idli, dosa, rice.  But he chews chapatis, chicken, biscuits, wafers, nuts, etc. and eats them well.  But he never chews rice, idli or dosa even when we tell him many times.  When insisted upon he will just show an exaggerated chewing action and swallow it.  Our problem is how to make him chew all his food before swallowing.  Also he is particularly fond of eating salt, coffee powder and sugar, tea leaves and sugar.  Often when we are watching TV or taking a nap he raids the kitchen for these.  I do hope Ms. Dawson can suggest some solutions.

A. I am glad you found the article on Eating Habits useful.  These are suggestions that have been tried and have worked with a vast majority of children and young adults.  It's great to hear that Abhilash is now eating all kinds of food and that is something that you have probably worked at and that is commendable.  I would just like to comment on a couple of things you have mentioned that are bothering you.
a)  He chews chapatis, wafers, etc. but only swallows idlis, dosas, etc.
b)  When insisted upon he will make an exaggerated chewing motion and then swallow.

To begin with, maybe you want to sit back and evaluate objectively why it bothers you.  If, despite swallowing the food, he does not have any digestive difficulties, then the best alternative would be to accept that as "just something he does." The texture of the foods mentioned are clearly different and it is possible that Abhilash feels comfortable swallowing rather than chewing some of these.  This could be because of a sensory sensitivity.  It might also be a coping behaviour.  By insisting on chewing you are giving the behaviour unnecessary attention and maybe creating a certain amount of stress, which is best avoided.

Many times children adopt habits that are coping strategies but they turn into attention getting behaviour when given too much attention.  So maybe you want to just let the swallowing be.  If you do, be consistent about it.  Also, eating all kinds of food is a fairly recent change and you do not want him to lose this behaviour, which he might if he feels forced.  A lot of autistic people often favour unusual combinations of eatables.  The plain coffee powder and sugar, etc. seems like a good example.

If you want him to stop,
a) IGNORE it if you see him with it. (ignore ALL undesired behaviour and PRAISE all desired behaviour.)
b) Put a lock on the cabinet in which these items are kept.  If he communicates his wants, you can have one specific time in the day when you give him a bit of the desired item. (Salt and sugar may do no harm, though coffee or tea may not be a good idea).  At all other times you just tell him once, "Time to eat salt is in the morning", (or whatever time you have decided on.) and do not pay any attention to a protest.

Q. My daughter often sleeps very late or wakes up in the middle of the night and cries. During the day, she goes or is taken to the toilet and she does it there, but wets her bed most nights. Can you suggest a solution?

A. Very often children with Autism, have irregular, odd and disturbed sleep patterns. They may sleep less than usual, get easily disturbed, or may sleep at odd hours. We want to always remember that as parents our own health and energy is important and necessary as we are the ones who have to look after the child. So, even if A does not sleep enough at night and remains awake arrange things in such a way that she is safe on her own and you can sleep. The easiest thing is to structure the bedroom. This means that you remove things that A might want to explore but need supervision to do so: put away breakables, fill in electrical points, bolt the room from the inside so she cannot go out, and lock/ bolt any attached rooms that are there. Just make the room child friendly, as you would do for any other young child. If she tries to get attention by crying, screaming, pulling hair or pulling you - just ignore it. Often when a child cries at night she gets attention, and learns from this experience the she can cry and get attention whenever she wants and that there is also an exciting hu-ha every time she wakes up at night. Ignoring a child during this time, (even a regular child) works well, if it is done consistently and persistently. Initially it may be a little difficult as when you start ignoring A may do more things to wake you, but continue to ignore comfortably.

Another reason for lack of sleep could be her sensitivity to sounds. A child may be distracted by or bothered by certain sounds that are of no consequence to us. That's something you want to consider as well.

Many times when a child wets the bed, and we do not know how to cope with it, it is very natural to get stressed out by that. We may react and discuss it during the day, as a big deal and often this discussion is in the presence of he child. We want to remember that this child is enjoying the attention from all the discussion and will do it even more to get that attention. Frequent wetting is often an issue of control. We can force the child to do everything else and control him completely in almost all areas except for his toileting. He is the only one who can decide when and where to relieve himself. Hence, we would suggest that you follow a toilet schedule, praise and ignore appropriately as we have suggested in our toilet training information and stay relaxed about the accidents. Rest assured that it would reduce and go away in time. The better you can ignore the faster the unwanted bed-wetting will reduce.

Back to top

Academic and School Related

Q. My son is eight years old. He can do activities like colouring, writing numbers up to 100, copying words and other activities like peeling potatoes and putting toys by after playing. The problem I am facing is that even though he can do all this, he mostly leaves the task without completing it and has to be reminded to get back and finish it. I want him to learn to do things completely on his own.

A. Many children with autism have difficult work behaviours. They may start a task, walk away in between and may or may not return to complete it in piecemeal fashion. This happens a lot because the child may not understand the concept of “finish’ and therefore may take breaks even though the task is not too lengthy or challenging. It is therefore necessary often to teach the concept of ‘finish.’ To do this there are a few things we can do.

For instance, introduce the word ‘finish’ whenever he finishes an activity that is a part of his routine. When he is done eating his food, or drinking milk, we can say ‘Finished eating’ or ‘Milk finished.’ In time, we slowly teach him what to do with the plate, or glass, after eating or drinking is done. When doing table-top work we can have a designated area as the finished area. The finished area could be a flat tray, a mat, a box, or an outline traced on the table, preferably to the right side of the child. When the work is done we can say ‘finished,’ and guide him to place his work (notebook, puzzle, beading, blocks, or whatever has been the work) in the designated finished area.

Let the child know through visual and verbal clarity what is expected from him and what shall happen next when the work finishes. A reinforcer at the end of the work can be a great motivation to complete the task. Another suggestion is to be very sure of giving him an independent task only when you are completely certain that he can accomplish it on his own. The duration of the work also needs to be taken into account. The child’s attention span during independent work would decide how much work could be given. Sensory stimuli that can be distracting also needs to be addressed.

Q. My daughter aged five has been diagnosed with autism. We are trying to get our daughter admitted in an integrated school in Jalandhar, Punjab. The Principal wants to observe my daughter for a few days in the school before taking any decision regarding admission. We have these queries:
1. Is it appropriate to decide by observing the child for a few days?
2. What should be the response of teachers/ students towards our daughter as she sometimes starts laughing?
3. How shall the teacher explain to other students regarding above mentioned behaviour as the students get disturbed?

A. It is good to know that your daughter has got an opportunity for integration in a mainstream school with an opportunity for learning along with her typically developing peers. I am sure the Principal has good reasons for wanting to observe your daughter before taking a decision. As far as we know, the school you refer to also has a section for children with special needs and different learning styles. Therefore the observation period is perhaps to help the school assess how best to accommodate your daughter in the school so that her needs are met. Regarding your daughters laughing without obvious reason we need to first assess the behaviour. Why does she do it? What happens when she laughs? What do people around her do when it happens? Only after we assess all this we can work out a behavior management strategy. Laughing can be an inappropriate emotional response, sometimes children may laugh in order to cope with a difficult or a new social situation. Or they may laugh to gain the attention of others, hence the need for an assessment. Once you understand the function of the behaviour you would be better able to help her to control the behaviour, indulge in it at specific times, learn some alternative behaviours.

Regarding sensitizing other children and the teachers - the children in her class would be very young and therefore would be accepting of differences. If the teachers are sensitive, so will the children be. Children pick up cues from adults on how to behave with others. From what we know of the school, we believe they already have taken in a few children with Autism and the teachers would be sensitive. Please do not worry about your daughters behaviors beforehand. Also that the school is not making any commitments without observation is perhaps because they are still very new to this, and want to be sure their staff have the skills to help your daughter. The very fact that this school in Jalandhar is making an effort at inclusion is commendable. In case the school feels that she can join the special needs section and not the main school, you could always ask them for the reason. Not as a confrontational issue, but to help you understand what you could work on to support your daughter’s inclusion. We want to work towards inclusion for all our children. To enable successful inclusion we have to understand our child’s strengths and emerging skills, and work on these as well as the weaknesses. This can be facilitated by a functional assessment by an expert in autism. So please contact a good professional in Jalandhar for a functional assessment.

Q. I am a physiotherapist working for UNICEF in Maldives. I need information regarding the management of my client having autism with attention deficit hyperactive disorder. The child is seven years old and has some behavioral problems such as poor eye-to-eye contact, refusal to participate in regular activities at home or for schoolwork, and breaking rules. But he is very interested in operating the computer and plays for nearly three to four hours on it. I would be very thankful if you give us information on any place where we can get CDs through which he can learn to improve his academic skills, communication skills and social skills.

A. From what you mention it appears that the child's family and therapists would need to apply consistent behavioural techniques and initially work towards compliance training. Along with this, one would need to make the child's daily routine (or other activities that he resists) more motivating. One would need to understand the principles of behaviour modification, particularly that of reinforcement (rewarding appropriate behaviour) and incorporate these methods into his everyday life. You may also like to try structuring his everyday routine and make what you expect of him, in terms of activities, visually clear. It is also essential that you use simple, clear instructions or language when talking to the child.

It is unusual for a child to get a clinical diagnosis of both Autism and ADHD; you may like to revisit this diagnosis. You do not mention whether the child is on any medication at all for the ADHD. If the hyperactivity and inattention is simply due to the Autism, there are ways to teach the child through small achievable steps, and motivate the child to attend.

You are absolutely right to try and use things that the child already finds interesting, such as the computer. While there are a number of CDs available to teach pre-academic and academic skills, there are none that we know of that can teach children social or communicative skills directly. You might find it useful to teach the child alternative and augmentative methods of communication (you do not mention whether the child uses any words meaningfully), and other techniques to teach social skills (eg social stories, depending on what the child needs). There are a number of kinds of therapies for children on the Autism Spectrum; one would need to choose those that would benefit your child most. Aside from this, you would want to build on the child's strengths - you mention that he enjoys play. Perhaps this could be extended to more meaningful, functional or make-belief play.

We hold and organize a number of workshops through the year that might interest you or your client's family.

Q. I work in The Concerned for Working Children. We are a private NGO working to eradicate child labour through their participation and realisation of their rights. I have been through your website - it is extremely informative, comprehensive and up-to-date. I am doing a research project on out-of-school children - reasons and factors deterring them from entering the formal school system. I am doing a section on children with disabilities. Can autistic children be successfully integrated into the formal school system? A similar question was posted in your 'Autism Q&A' section where you said a few schools have managed to integrate autistic children. I was wondering how this was done. What would be the required changes in policy to make this happen in terms of training of teachers, infrastructure, learning aids, methodology, etc. How would a government school integrate an autistic child?

A. Your query would require a very long answer. Suffice to say that yes some children with autism can be mainstreamed. Some require no support and get by. Others do require support - often more social support rather than intellectual since they have difficulty in negotiating social rules. The best way to include children with autism is teacher sensitisation and training: some teachers find it very hard allowing for adaptations for a child with autism. Whereas with most other disabilities you can 'see' what the difficulties are, with autism it is not so obvious, and since the difficulties are social, teachers are often resistant to making adaptations. One of the concrete learning aids many children with autism would benefit from is computers; Other than some change in methodology, and sensitive teachers who are willing to make adaptations for the child. With adequate support government schools too can include children with autism. Of course it goes without saying that a student body that is by and large sensitized is essential for successful inclusion.

Q. My daughter P has difficulty connecting with people. We have been advised that she be put in a school where there is a Neurologist, Psychiatrist, Clinical Psychologist, Speech Therapist, play school and special school meant for autistic child.

I am working in Airports Authority of India and presently posted at Guwahati with all India transferable service. I will be transferred out from Guwahati within one or two months. I am a Bengali with mother tongue Bengali but not settled in any one place due to the nature of my service. I am in a confused state to decide my next posting either at Delhi or Kolkata. Except that in Kolkata my mother tongue will be used, Delhi will be better in all other respects including facilities available. I will be thankful if you kindly advice me for the following:

1. Is there any play school and integrated/ special school specially for autism run by your organisation or by others at Kolkata.
2. Whether such a school is available near the International Airport, New Delhi
3. Will Delhi or Kolkata be better for my daughter's treatment/ training/ schooling for her overall development?

A. There are a few integrated schools and special needs schools for the child with autism at Kolkata. Some schools that have services specifically for autism are Reach, Pradeep, and Autism Society West Bengal. There are a number of others that are meant for children with special needs but also take in children with autism.
For more information please contact Autism Society
West Bengal at: autismsocietywb@hotmail.com

The International Airport in New Delhi is outside town. The school closest to the airport is the Air Force Golden Jubilee in Dhaula Kuan. It is a mainstream school with a special needs section.

Another difficult question to answer is whether Delhi or Kolkata will be better for your daughter. The answer depends on a number of variables. The quality of the special education that you are able to access, the extended family support that you have, how well the immediate family viz parents are able to educate themselves about autism, and so on. While the advice that P be put in a setup which has the services of a Neurologist, Psychiatrist, Clinical Psychologist, Speech Therapist, as well as a play school and special school meant for the autistic child is perfectly valid, it is an utopian situation that I doubt exists anywhere in India. I may be wrong of course. However while most schools will not have in-house neurologists and psychiatrists many have consultant neurologists and psychiatrists. However there are a few trained setups in the country where though you may not have all of these professionals available, they have excellent therapists and would provide you with holistic training for P.

Q.In the Autism Network Journal: April 2003, Vol. X, No.1, an article named "My son Kartik" was published where Mr. Chandrashekharan described some features and behaviour of his autistic child Kartik. Many of these features and behaviour is similar to that of our son S.

S is an eight year old autistic boy. His sitting habit and attention span is very poor. He also sometimes cries without any reason. But his receptive language is very good and up to the level. He can recognise almost all the household articles either real or in pictures in books or in any other form. In academic side also he is quite developed.

In the above mentioned article Mr. Chandrashekharan wrote that his son is taught Science, Math, Social Studies, and English at Open Door School. So if you can send us the curriculum of Kartik then we can adopt this and can teach our son.

A. We are happy to learn that Mr. Chandrashekharan's article was encouraging for you and that you want to help your son through the same experiences. However we feel that sending Kartik's syllabus or individualised education plan may not be very useful because every child with autism is different. The same concepts have to be taught to a group of children in the same class keeping each child's learning style in view. In addition, the topics to be taught are based on the child's previous as well as current level of knowledge. Along with this it is equally important to be aware of how to teach these topics, what important learning outcomes need to be focussed on and how to generalize the knowledge.

As the entire process requires child specific planning and implementation we suggest that if possible you visit us along with S. Otherwise please send us a detailed mail about S's current level and thereafter we shall try and give some suggestions.

Q. I am sending F to a new school since July 2002 which is near my house. In his school they put a lot of stress on writing exercises. F does not like writing, at the most he scribbles and puts the pen down as soon as he can. Is he dyslexic? What am I supposed to do?

Secondly the teachers insist I teach F reading capital and small letters before teaching him to sight-read. Otherwise they say he won't progress much further in learning to read. I have tried to explain to them the method I use i.e. using F's strength at sight-reading but to no avail. What should I do, please guide me.

A. Many children with autism have difficulties with various motor functions. From our experience we find that many have a difficulty writing, though they may be quite willing to type on a computer.

F's situation might be such. On the other hand from what you say he is not averse to using a pen. Maybe you could try and keep writing sessions brief and pleasurable, following it up with a reinforcing activity. Also make sure he sees and understands clearly what and how much he is expected to do. So may be you draw a flower and a flower pot below and F has to join the two. So it is clear what he has to do. Then again maybe you have three such sets drawn and ready so he knows 'how much'.

Finally at the conclusion of the activity he could know that he would get to play with his favourite toy or get to do something that he really enjoys. In addition maybe he could do exercises on a vertical writing surface.

If you cannot get the teachers to understand what you want them to do with F and why, maybe you just let it be and teach him sight-reading at home. When you cannot change something that you have to live with, do the best you can. Since explaining is not helping, use your energies to teaching F rather than getting frustrated about what you cannot change.

Q. Though my son's handwriting is poor, when he is in a good mood he is able to write up to one or two pages himself. That is not permanent because he is often not in the mood. Shall I introduce a computer or typewriter instead of writing? Or shall I make him write in notebooks when he is in the mood to write? His school is willing to introduce a typewriter. Also, my son, (though otherwise able) is not able to tie his shoe-lace and does not show interest in doing it also. Can you give me some exercise to improve his fine motor co-ordination?

A. It is good to know that your son can write up to two pages on his own. As you might be aware, many children with autism have difficulty in holding a pencil with a firm grasp and therefore their handwriting may not be too good.

It is great that his school has agreed to allow him to use a typewriter. But you also need to continue encouraging him to write by hand also. Whenever he has written work that is not too lengthy encourage him to use his hands and reinforce the effort. Some exercises you can do with him:
o Use his fingers in a variety of activities like finger painting, assembling nuts and bolts, zipping-unzipping bags, dialing the telephone.
o Hold his wrist very tight so as to exert pressure on his fingertips. Do this a few times in the day.
o Play with kneaded wheat flour or play dough.
o For teaching him to tie his shoe lace try backward chaining. That is you make the loops and let your son do the last step, namely just pull the lace to tighten the final knot Gradually increase his role in the activity.

Q. I am the parent of an autistic boy diagnosed as high functional. He is now 13 years old. He is attending a normal school apart from getting training in National Institute of Mental Health Secunderabad. Now he is able to understand the basics in science, maths, and social studies. His writing is very poor. In spite of being given regular writing practice, his writing has not improved. I request you to give suggestions to improve his writing. He is verbally good. He is on GFCF diet.

A. It is good to learn that you have, with support from NIMH, succeeded in helping your son continue in a mainstream school. It is so important that we be able to include our children, yet it is so often hard to find schools that are willing to do so except with the very able ones.

Regarding his writing, this is one area that many high functioning ASD children have difficulty with, along with areas like joint attention, gross motor movements, and social interaction. You could try some of the following exercises: writing with a paintbrush on a paper stuck to a wall, writing with a stick on sand, and of course practice with handwriting exercise books.

If his writing is nearly illegible, and there is not much improvement, then perhaps you can persuade his school and if they are willing, to allow him to use a computer. Sometimes schools are unwilling to permit children with autism to use computers. If that is the case you will want to advocate for him. When schools can incorporate ramps and other assistive devices for children with CP, Braille for the visually impaired, why not computers for children with Autism?

Explain to his school that the computer for him is an assistive device, and as necessary as a ramp for a child with CP.

 

Q. My son was going to a normal play school till last session and now he would be going to a special school. However, we are not very sure how much support the school will provide as the school mainly deals with children with Mental Retardation. We are considering moving to the US.

A. I am curious as to why you took A out of the regular school. Did the school ask A to be removed? Till such time as you can take a decision to move to the US or not, you want A to continue at a regular school that is comfortable around him, while you continue working with him at home. This is just in case you decide not to relocate to the US.

As you yourself have noted, the special school that he goes to is not specially trained to deal with him anyway. So where is the advantage of putting him there. On the other hand if the regular school is comfortable having him then there is always the possibility of his continuing there. Getting a child into a mainstream school in India once he is older is always harder.

Oftentimes we are told by parents that as soon as their child received a diagnosis they removed him from a mainsream school and put him in a special school. Just because a school is called 'special' it does not automatically become special. A special school is a school that is equipped to help special needs children. If a special school is not equipped to deal with your child then it makes no difference.

I realise of course that it is possible that you had no option but to take your son out.

Q. My four-year-old S had learnt basic number concepts at school. He can "give one biscuit," "take two spoons," and so on correctly. I have recently started taking him to a speech therapist. The speech therapist says it is too early for S to be doing numbers. He wants to teach him to recognise his mother and father and other family members. He does not want any focus to be given to teaching numbers or other such skills at this stage.

A. How do we decide what a child can now learn? Taking into account his age, his ability, and his potential. S's school had made an assessment and considered him able to start on various cognitive skills. It woud appear they are on track since S has been able to learn number concepts and not merely numbers by rote. Why would you want to stop this process? According to S's assessment as well as going by your understanding, your son recognises all family members without any difficulty: so why does this skill have to be taught now.

Two things we want to keep in mind: One is that in teaching our children we want to help stretch their minds, not 'teach' things that are below their ability level or which they already know. Second is that we always want to query what is being taught: just because someone says, "Do this" we dont not want to blindly comply. So maybe you want to ask S's speech therapist "Why?" I am sure a discussion will help clarify goals for both the speech therapist and you, S's parents.

Q. Please give suggestions on difficulty in teaching, particularly math.

A. Children with autism have very good rote memory. They learn songs, read sentences or even a history or geography lesson by rote without quite understanding the meaning. In junior classes rote memory works because a child will be asked to write the answers to
2+3=___ or 4-2=___

As the child goes to senior class, this no longer works. He begins to have difficulty, because his concepts were not clear to start with and there is a lot more use of language such as problem sums that need an application of language to figure out.
Help strengthen his number concepts by using real objects. Ask him to pick 1, put 1 (in containers), give 1. Similarly teach other numbers. Make teaching and learning as functional as possible. This means that you will have make everything very practical and related to daily life. "Give two biscuits to daddy" or "Bring five spoons from the kitchen."
Reading more about autism will also help you figure out new ways of teaching. You could also give his teachers some reading material on autism.

Q. My son D is born blind and has severe autistic tendencies. There is hardly any material or information available on blind children with autism. Only recently National Association for the Blind (NAB) Started a programme to help children like D. This is a home-based programme …still at the experimental stage.

D's mobility is good and he has developed good sense of touch and smell. He performs daily chores himself. He has a good memory, but his attention span is very short. Sometimes he throws a severe tantrum and sometimes he is very euphoric. His social awareness is minimal. Though his speech has improved over a period of time, his communication skill is undeveloped. How can we deal with his handicap?

A. It's great to see that the NAB has started a program for children like D, even if it's at an experimental stage. The main areas we want to work on are communication and socialization with D. Here are a few things we could do.

1. Speak slowly and clearly. It is important for him to have the complete and accurate sound. That will help him to express what he wants to in a similar way, in other words, clearly. Many time children do not respond verbally because though they can understand what is being said they are not equipped with the words that will help them to respond.

2. Give clear instructions. Know exactly what you want D. to do and make your instructions specific.

3. Sometimes you might need to break instructions down to simpler steps depending on how focussed he is. For example: You are in a market place and you are telling him to put back a box that has accidentally fallen down. He does not respond. Break down the instructions into steps. "Bend down." "Feel the Box." "Pick up box." "Keep it on the shelf here"…gently tapping the place where it is supposed to go.

4. Another reason for non-focus would be that children with Autism have certain sensory sensitivities. For instance, if you and I were having a conversation in a room, apart from us talking to each other, there are other sounds and noises, say, the traffic outside, the fan, even the movement of someone around. But, during the conversation, we choose to filter out what we don't want i.e. sounds and noises, and focus in on the conversation we are having. Children with Autism have a difficulty in filtering sensory information. Being clear and slow in our instruction to the child goes a long way in helping them to respond more often.

5. Also we want to inform our child about changes, for instance, if we are going to visit someone or even going out of station, we want to inform and prepare our child before hand. Tell them, "Today we are going to Khanna Uncles place for tea for two hours, we want to be smart".

In life we all want to control our environment, we do this through communication. Children with autism also have the same want, but because of their communication disability are unable to come up to us and say it. It is because of this lack of control that we often come across unwanted behaviour or "severe tantrum". Since we know this, a great way to work around this with your child is to give him choices- realistic ones. We want to follow through with the choices we give our child, example, if we as a family are going out, then giving my child a choice like, "Do you want to go with us or stay at home," (when everyone in the house has decided to go) would be unrealistic. When we are giving a choice to our children we most definitely want to stick to it. A realistic choice would be "Do you want to wear your sandals or your shoes" or you could say, "Do you want to go with Mama or with Papa?

Another way of dealing with this is by helping him to understand what to do with his time. We want to inform our child about what to do? How much to do? When will it finish? After finishing then what? Giving structure to the child would be most ideal. The first thing that structure does is it helps the child understand his environment. When he understands his environment, he learns better. Structure also in the long run provides independence, because our child learns what to do and when without being told. We could structure play, work, or any other activity that the child may be involved with.

If you were to visit Washington. D.C. and had absolutely no clue about the place, what would you do? Wouldn't a map make it easy for you, rather than you getting confused about what to do? Structure for the Autistic child is just like that map for you.

Structure his time by providing a schedule to follow
A schedule tells the child what to do and what to do next? It could be a written or picture schedule. Since D is visually impaired an object schedule would perhaps work best.

Have a rack or shelf accessible to him, with a basket below it or just next to it. In the sections of the rack put the things you want D to do. For example, in the first shelf have a ball (indicating play), second shelf have a cassette indicating that you would want him to listen to music, in the third shelf have a plate and spoon (indicating to go to table for food). The idea is for him to follow either a top to bottom or left to right method of picking things up that will cue him into what to do. D begins by going to the shelf and picking up the object on the top shelf. He does the activity. After finishing, D comes back and puts the object into the basket and then carries on to the next shelf, e.g. After playing with the ball, go to the shelf, put the ball into the basket, take the cassette and go listen to music. D wants to be told how much to do ( one cassette completely)and when the activity will finish( when both sides have finished playing). This gives completeness to a whole process. D will get the message, "I FINISH THIS, THEN I GO TO THE NEXT STEP".

Initially we want to work with the child and give him simple and clear verbal instructions, slowly fading our verbal prompts. For instance, " D lets check schedule, (take him to the shelf). When you are at the shelf, move his hands through the shelf and say, "D will play with ball first (let D touch ball), do this activity (touch the tape), then have lunch (touch plate and spoon)". First, D will play with ball for 5 minutes, then go check his schedule. Initially play with him, after 5 minutes are up (to give D a clue you could set an alarm clock for the 5 min duration. When the alarm rings say, " Playing with ball finish, time to check schedule". Go to the shelf, "Put ball in basket, check schedule (touch activity tray) and say, "activity time", take him to the area you want him to do the activity and repeat the process as mentioned earlier.

Structure his environment
It is best if D has a fixed areas to work, relax, eat, sleep etc..
This schedule could be changed as and when you want, with what you want -depending on the day. As you are aware children with autism have a need for routine and sameness and a need for control is always there as mentioned earlier. A schedule works around that, it gives our child a structure to follow and us the control to get what we want the child to do.

When we do activities with D we want to have excitement and energy in our voice. We want to present our activity in such a fashion that D would want to do it. But in all this we want to be clear and concise. Choose your words, formulate your sentences before speaking to D, this way you have D understanding you and knowing what to do next.
We will be sending you a few notes on teaching tips and how to work in structure: where you are asked to work with cards or picture, use objects.

Q. I work with a child who is developmentally delayed, with autistic tendancies. He has been biting other adults the children and me. Do you have any suggestions on how to deal with/stop this behavour? I've tried time-outs, using angry facial expressions, strong voice tones, and giving him something else to chew on. But I'm not having much luck. I think he understands most of what is being said to him is simplfied but he has no verbal language. He is eight.

A. Okay. Firstly we find that in most cases, time outs, angry facial expressions, strong voice tones do not work. We know that this is a child who is socially impaired. Chances are that when he is occupying himself twirling a thread or obssessively building with blocks one feels 'Oh thank goodness' and generally leaves him be. However, when out of stress, or frustration at his inability to communicate there is an attempt to bite there is, if I may guess, always a big reaction. So here is this child who learns soon enough that when I put my teeth against a person's flesh there is this excitiing thing that happens: there is a frisson in the air, this person makes a big noise and interesting faces, and generally a lot of exciting things happening. So maybe I want to try it again to watch the interessting developments that follow! Soon it develops into what we call
reaction getting behaviour.

So what do I do? Do I sit there and ignore it and let this little fellow bite a chunk out of my arm? I dont think so! Instead, since I know he does this I could be focussed to catch some cue that tells me he might do this, and position my body such that he cannt get a bite. If I am in close poximity doing an activity with him maybe I could keep my hands casually and gently on his shoulders so that even if he wants to lean forward for a nip he is unable to. For group activities with other children I seat him in such a manner that again he is unable to get his teeth anywhere near for a bite. When a bite does take place best if the child receives no reaction for it. If it is one of the teachers just remove yourself. If one of the other kids, again maybe you remove the other child and give the recipient of the bite a lot of attention. Not 'oh poor you' kind rather a rub on the spot, or a kiss or a hug. The idea is that the biter receives NO attention for the act and instead the bitee(!) ends up with a lot of attention.

This is certainly not the only way but we find this manner of dealing with most challenging behaviours very effective. Has worked with a range of our kids. Perhaps you will find this useful.

Q. I am seeking information on including autistic childrent in primary school. How to handle negative behaviors such as biting, scratching, hair pulling, pinching, and kicking.

A. We are often told by families that their children have behaviours such as biting, kicking, pinching, hitting etc. that are a cause of a lot of concern as they are undesirable and also difficult to deal with at times especially in social situations.

As you are aware Autism affects the social development of a person. A social skill that we take for granted is the ability to get another persons attention. Children with autism do not know how to get attention. What they do learn as they grow is that when they are sitting alone or quietly or doing their own thing, people may pay little or no attention to them but as soon as they do something like kick or scream or bite, they get an interesting reaction like a shout or a scream, or a loud 'No'. the behaviour is often discussed at great length and a whole lot of attention and importance given to it. For most children such behaviours are learned and reinforced by the reactions they get.

So if we want to eliminate these behaviours we need to IGNORE ALL BEHAVIOURS WE DO NOT WANT and ACKNOWLEDGE/PRAISE ALL BEHAVIOURS WE DO WANT. Catch the child sitting quiet and praise him for that. Completely ignore him when he is pulling hair. We also want to structure the environment so as to avoid the behaviour happening in the first place. Behaviours that hurt can be avoided by taking care not to be near enough to get your hair caught. Take shoes off before sitting to work so you don't get hurt when kicked. Hold the child's hand gently so you can anticipate a pinch. Occupy the child's hands as much as possible so he uses them for constructive activities instead of pinching!! If anyone does get pinched, for this method to be totally effective, it should just be ignored. People in the environment need to be especially aware not to discuss any of the children in their presence because this too is attention to them.

One other suggestion is to provide them with alternatives of behaviour. Most often we tell our children "Don't pull her hair" or "Stop Hitting" or "No! Don't bite". We tell them what not to do but not what to do. So give them alternatives. "Hands down" … "Leave hair"…"Sit smartly"…"Feet to yourself". And whenever he is behaving as desired we want to praise positive . " Kept your feet to yourself…smart boy!" or "Being gentle when you touch…excellent!" etc.

These are some of the methods used that we find very effective in the long term. One important thing to keep in mind is that when we ignore it MUST be done with comfort. Even if we don't look at them or show our discomfort they can sense it and may use that as a button to push everytime. I hope that this will be helpful. You want to remember that results will not show in a day or even in a week for some children. But remain persistant and consistant for the effort to eventually pay off.

Q. I would like to know about 'Open Door' education system for autistic children in detail. We are living in Bombay, and I have a son of two years and four months who has been diagnosed as autistic. What I wanted to know was, is it possible to attend the 'Open Door' education for my son and how we should proceed about it.

Also, is it possible to train parents with special training to take care of autistic child? Does the 'Open Door' education system follow 'ABA' method?

A. Open Door is a laboratory school geared exclusively to the needs of children with autism. The methods we apply and find useful we share with families all over the country as well as other countries in South Asia. It is therefore a small school. Another reason why it is small is because we train every teacher that works with us.

We do not want to encourage families to relocate just to put their child into Open Door. However we do welcome families who want to come for a short period to train with their child and go back to continue with home programmes.

Of course it is possible to train parents. Parents know their child best and often take the lead in helping their child. Since there are not enough appropriate schools for children with autism, many of the children attend whatever school is available while their parents run excellent home programmes simultaneously.

Applied Behaviour Analysis (ABA) is a programme that requires complete one on one with extensive record keeping of every behaviour and so obviously is difficult to apply in its entirety in a school setting, particularly in India. Other than two schools in the USA that run ABA programmes, we do not know of any other schools that do. It is a programme that families use to home school their children. To implement ABA in your home setting you require trained practitioners to come into your home and give the programme to your son. But such practitioners are not available in India.

However, what parents in India try and do is train themselves to set up a programme for their child. Though the programmes do not fit any strict label like ABA or TEACCH or whatever, that hardly matters. What is important is many of them succeed in helping their children through structured behavioural teaching. Most parents educate themselves and follow some of the excellent books and manuals available on the subject to give direction to their home programmes.

In India it is unrealistic to expect to be able to apply ABA, TEACCH or any other method in its entirety in any school setting. At least not with the very modest fees that most schools charge. At Open Door with our very limited means we obviously cannot apply ABA. However our methods are behavioural (as is ABA), along with which we use many of the TEACCH applications. What is most relevant is that Open Door uses structured behavioural teaching along with an approach that is respectful of the child, that is accepting, loving, and non-judgmental. So far we find our methods help the children show progress, and more importantly help families come to terms with their child. What is finally most important is keeping an open mind to any methods that we feel can help our children.

Q.Is it possible to integrate children with autism in a regular school? If so what should be the curriculum? Where can I send my counsellors for effective training so that they are able to deal with difficult situations that may arise? I run a school.

A. Yes it is. A few schools are beginning to integrate children with autism in India. In many of the developed nations it is of course well established.

As these are children in the regular school system you want to follow the same curriculum as the other children. Sometimes a child with autism might require a certain flexibility like learning two languages instead of three - but this does not have to be the norm. Depends on the individual child. What is more important is that the children might require slightly specific teaching methods for maths for instance or languages. However again it all depends on the individual child. Also some of them might require some physical structuring within the classroom.

Perhaps we will be able to help your counsellors, if you could write in exactly what kind of training you had in mind.

Back to top

Medical and Medication Issues

Q. The Doctor has advised us to give Resperidon to our son. I have a confused notion about medication. Please help me.

A. Your son’s doctor must have explained to you why he has prescribed the resperidon. From what I recall your son has significant sensory issues and a certain amount of over stimulation and over activity. Providing activities for sensory integration, as well as specialized teaching, will of course help. However, due to the stresses of parenting a child with autism a family sometimes finds it difficult to handle a child’s behaviour by training alone. A doctor might then prescribe a drug like resperidon to enable the family start teaching the child. Once the child ‘learns to learn’, the drug may be slowly tapered off and stopped. Of course this must be done under the physician’s supervision.

Q. I am an Indian living in the UK. I heard that the vaccine called MMR which is for Mumps, Measles and Rubella causes Autism in children. We cannot decide if we should get my sister vaccinated with the same. She is about 16 months old. The doctor says we could get three different vaccines for the three diseases. Would that be a safer option? Kindly advice as we are greatly confused.

A. It is a hard decision given all the confusion on the issue. Not giving the vaccination leaves the child susceptible to Measles, Mumps and Rubella. Despite research clearly indicating prenatal and genetic basis of autism there is a strong lobby that believes that the vaccine will cause autism. Interestingly, we know families who vaccinated their older child who now has Asperger's, and skipped the vaccine for the younger one who later received a diagnosis of Autism. It is a tough decision and finally one that the family alone can take. Perhaps your GP can help you take the decision.

Q. I have read in a magazine entitled 'Vanita' about medicine for autistic children. The article says that autistic children can be cured by that medicine. The name of the medicine was not given in the article. Please advise me about such medicines by which autistic children can be cured.

A. People have experimented with a few drug treatments such as secretin, fenfluramine, megavitamins, tranquilizers, naltrexone and homeopathic alternatives. However there is NOT enough research to substantiate any claims of benefit from these drugs.

At this point we do not know what causes autism and so cannot 'fix' or cure it. However, an approach that has been found to help in all cases is an appropriate training program that is very specific to the child's need. Autism is a life long condition but with appropriate intervention (teaching and training methods) the child can progress to his or her fullest potential.

Q. I am one of the regular users of your web site. I live in Hong Kong and have a son who is 3 years old and autistic. He has constipation frequently. I want some advice whether I can use Sat-Isabgol - a kind of husk which is a popular North Indian natural remedy for constipation. I am not sure if this contains gluten as my son is on gluten free diet. I wonder if you have any experience of any parents there using this for their children or if you could advice on this issue.

A. Sat Isabgol is one of the best natural remedies for constipation. Many of our parents use it. We do not have sufficient information on whether it contains gluten. Off the cuff I do think it is gluten-free.

However in a couple of weeks we will be hosting a conference on medical issues in Delhi which will, amongst others, have a presenter from the UK, a doctor who is very involved in biomedical issues. I will ask her opinion when she is here and mail you her comments. If she has any printed matter that is helpful we will mail that as well.

Q. We were recently advised to take a CT scan of my four year old autistic child.

A. From our experience with families we find that children with Autism are often routinely sent for CT scans as well as other tests. A scan is required if one suspects disorders other than Autism. A scan does not help in any way in dealing with the child's Autism. However, you want to ask your doctor why the CT scan had been advised. That will help you to make up your mind on whether you want to go ahead with it or not.

Q. Please give suggestions on the using of drugs to control hyperactivity.

A. Most children with Autism have age-appropriate physical development. They eat as much as other children and therefore have the same energy levels. The difference is that other children go out and play physical games, use their minds for academics and generally use up energy in so many different activities. As for the child with autism, he does not get these channels to release energy. That is why he may walk, jump, run endlessly etc. These are his way of keeping himself occupied.

--Stopping the child usually does not work because he has to get rid if the energy somehow.
--The "hyperactivity" is really the child's way of keeping himself occupied. If we don't want him to run or move around in excess then we have to keep him occupied in some other way.
--Cutting down on chocolates, colas, chips, and processed foods often helps.
--Take him for long walks or a run in the park.
--We agree with you about the possible side effects of drugs. Most often we give our children drugs without checking out the side effects completely and more importantly without proper monitoring. In our work we do not use drugs except for medical reasons such as epilepsy. We find that drugs often sedate the child and reduce his ability to learn.

However, this is our view. There are different viewpoints on this. And finally the decision to give or not give drugs has to be yours, the parents.

Q. We have a daughter who was diagnosed as autistic at the age of four way back in 1970 and since then we had the benefit of consulting many psychiatrists and psychologists. She has been taking haloperiodol (Hexidol, 1.5 mg. tablets 3 times a day along with Parkin, 1 tablet) for the past seven years. We have been reading some books on Autism and with the rapid strides that have been taking place in brain research of late, some doctors who have authored books on autism are of the option that more than drugs, our conduct towards autistic children and our acceptance of them as normal makes a difference and raises their self esteem. In fact, some authors advise discontinuance of haloperidol after some years due to its bad effects. We shall be grateful if you would kindly let us have more information particularly on the continued use of drugs like haloperidol for the whole lifetime.

A. First of all, as you may already know, there is no medication to treat autism. Medication is used only to treat specific symptoms of autism, and as you accurately have pointed out, it is also very controversial. Many of the drugs given to autistic children in India are unnecessary and may actually worsen the problem by making the child sleepy, less active, and less alert. The psychiatrist who prescribed this medicine should have told you exactly what symptoms Hexidol was supposed to change. Then, you could observe your daughter and see if there is a positive change, and if so, you may feel the negative long term effects are justifiable. But if parents don't ask, many times doctors do not adequately discuss this information with parents and it is possible that inappropriate medication may be given.

As an organization, we advocate that parents try other methods of dealing with their children's behaviours (other than seizures) before using medication. However, if you are considering discontinuing medication, you must do so very gradually with the consultation of a doctor. Drugs such as Hexidol are extremely powerful and should not be suddenly stopped. Incidentally, you are absolutely correct about attitude making an enormous difference in the progress of an autistic child.

One other note. Many parents have confided that they are unsure how to approach their psychiatrist with regard to discontinuing medication. Some parents have worried that the doctor will disagree or become offended, especially when the medical profession is so respected here in India. What you want to keep in mind is that it is your child who is to receive the medication and you have every right to decide whether you want your child to continue with the medication and share your decision with your child’s doctor. One researcher who interviewed over a hundred families of autistic children in India found rather alarming dosages and prescriptions being given, as well as dangerous combinations of drugs. It is important to continue to read as much as possible yourself about medications and autism, so you can make informed decisions about your daughter's treatment.

Q.  My daughter hits her little brother, and other members of the family. She removes her clothes. She is also a poor sleeper.  Can we give her Serenace to make her sleep?

A. You've inquired about 'Serenace'. Our belief is this drug and the likes of it are best avoided. As you learn to be comfortable about your daughter's autism, and be consistent in your responses to her, she will also calm down. Many autistic people have erratic sleep patterns and may sleep for only 4-6 hrs in the 24 hour period. If she is safe in her bed or walking around the house, then you want to let her be, and go to bed yourself. Ignore any noise she might make. Just make sure that she is safe and the house is child proof.

Medication is something we prefer not to advocate.  Our belief is that in sedating a child, we'll just be reducing the opportunity for her to learn and progress.  But we also want to make very clear that this is our subjective opinion; you as parents have to take the decision yourselves.  We only make suggestions.

Q. How do I prepare my son for a visit to the dentist?

A. The most important thing here is honesty. A visit to the dentist can be stressful for anyone, even neurologically typical adults. Children with Autism have sensory difficulties, difficulty waiting and holding still and usually dislike doctors in general from having experienced being dragged from one to another. Play pretend-games where you are the dentist and do dentist-like things to him in a fun, exciting manner. Tell him also what exactly the doctor will do. Be honest. Tell him that it will hurt, but that the pain will go soon. Take him to visit the dentist a few times just to talk and become comfortable with the place. A reward planned before hand like an outing to a special relative's/ friend's home, a park etc is an added incentive.

Back to top

Family Issues

Q. I am a 28 year old lady with Aspergers Disorder. I am established in my job and highly educated but cannot get my life partner and get settled due to lack pf proper communication skill. I want your help to overcome my problem.

A. As you have found yourself, getting a life partner requires rather complex communication and social skills which can be an issue with people on the spectrum. While we would like to help you, we work out of Delhi and it would be difficult for us to have regular discussions on your needs. If it is at all possible for you to travel to Kolkata from Midnapore then you could contact the Autism Society West Bengal: <autismsocietywb@hotmail.com> for support.

Q. My daughter is ten years old. She has Autistic Spectrum Disorder. She has been attending a special school since three years in Mumbai. We get lots of help from special educators, speech therapist, and occupational therapist. She is developing. If possible she will get vocational training from her special school in future. But we are now worried about her long term rehabilitation we do not know about residential centres in India. We know many centres where mentally ill persons are rehabilitated but they are not equipped to care for persons with autism after the death of the parents. We are looking for your suggestion.

A. First of all we want to commend you on how well you have worked with your daughter and appreciate your positive approach towards her learning work skills. Your concern regarding her future when parents will not be around is the worry of almost every family having an autistic child. We presume that you are in touch with the parents support groups at Mumbai and are aware about the guardianship issues under the National Trust.We do not have information on any long stay rehabilitation centres that are run exclusively for persons with autism. However we do know of individuals with autism who are in Adhaar, a residential centre in Thane District. In the past Jai Vakeel School in Mumbai also did take in some youngsters with autism in their boarding and perhaps still do.

There are various models of long stay residences all over the world. One option is that wherein the persons with autism can live within the community in small group homes run by parents and if possible along with relatives and friends. To make this dream come true one needs to identify parents of children and adults with autism who would like to work together to form trusts and set up such units. This of course needs sincere team efforts that can be made with guidance from organizations/ parents / professionals with experience, and the National Trust.

Q. An Autistic girl of 20 is self-sufficient to a great extent. She shows signs of attraction for the opposite sex, has regular menses. She is beautiful, and plays the violin quite nicely.
1. Is marriage advisable?
2. Is there a possibility of normal sexual behaviour?
3. Will it improve her condition?

A. It is very difficult to respond to your queries one and two with such limited knowledge about the person in question. Many persons with autism develop normally through puberty including developing an attraction for the opposite sex. However, that may not automatically equip them for marriage or 'normal' sexual behaviour. Marriage requires the ability to take responsibility not merely of oneself, but also of ones partner, as well as of possible offspring.

On the other hand, there are persons with autism who are on the very able end of the spectrum who marry and raise a family. Each individual has his or her own potential and limitations. No one blanket judgment can be applied to all. Each situation has to be seen it its own light. The only question one can answer with confidence is the last: No. Marriage will not 'improve' the condition of a person with autism.

Q. I'm a student working in an institution with persons with autism. I just wonder if you can give me some ideas about how to make autistic children's parents participate more and show more respect and care for their sons. I am trying to build a project for this institution.

A. Sometimes one does encounter families who appear not to particularly care about their children. This is as true of families with typically developing ('normal') children as it is of families that have a disabled child.

When the child is disabled the situation is a little more complex. I don't know how it is in Portugal, but in many traditional societies it was seen as almost shameful to have a child with autism or any other disability - physical or mental. In that sense one has to really work on social beliefs.

When we want to help parents change the way they feel about their child we have to start by not judging them for their attitude. No one of us can really know what it might be like for any family to have a child with a disability. Any disability. Each one of us has certain aspirations and expectations of our children. Often these have to be set aside completely. That is not the easiest of things to do.

With autism sometimes the situation is complicated by the fact that the children often appear not to understand anything - when in fact they do understand far more than they are given credit for. They may appear not to be aware of their families. They may have a difficulty, because of their sensory difficulties, in being able to deal with physical shows of affection that involve physical contact and so on. Further complicating the situation for parents is the fact that the children usually 'look normal'

In this situation there are two things that we find work: firstly, giving parents a clear understanding of autism and the unique ways in which it affects their child; secondly, taking them through a few simple awareness exercises that helps them see the world through their children's eyes and thereby understand how difficult and stressful the world is for their autistic children. We find this method very effective. It makes parents really sit up and say, "I never knew it was like this!"

Q. One thing we have read on the internet is that if one child had autism then it affects the other normal child also, We are really worried.

A. Please do not worry about your other son being affected by autism. He is already nine years old. If he were to be autistic I think he would have been so by now. I don't think nine-year-olds 'turn' autistic. The onset of autism is by 30 months latest, remember? And it is not contagious! So don't worry about that.

Back to top

Specific Therapies

Q. My child is now six years old. She is suffering from childhood autism and taking treatment at Tamil Nadu. My wife is taking her to Speech Therapy classes daily and giving her physiotherapy also. Please advice what type of puzzles and toys would be suitable for her.

A. We do not have any list of toys specific to children with autism because each child is different. Though many children with autism do not show much interest in conventional toys, toys that provide sensory input are liked by most of them. These days there is a wide variety of such toys available. Cause and effect toys that produce sound / light/ movement on pressing a button are easily available and at very affordable prices

Get your daughter simple toys that can enhance her learning in various areas. Play dough, colourful blocks, activity centres, cush balls, beads, are things a child can play with and they also enhance motor skills.

Many children like to build blocks, scan through books. Picture books like the ones in the Lady Bird 'Learning to Read' series, Children's Book Trust and National Book Trust, may be useful as these have simple pictures that the child can identify with.

Jigsaw puzzles can be fun if the child can to fix them. Some would enjoy playing with educational puzzles such as the ones on ‘opposites’, ‘things that go together’, etc – that often come in interlocking sets. However a child with autism may just follow the pattern of the interlocking cut-outs and fix the correct pieces together without ever following the concept. Therefore in the latter case you can get cards that are simple square pieces (brands such as Creative and Funskool have them) and come in interesting sets such as:

• what comes next picture sequencing
• match and learn
• opposites

Every child with autism is different and so are their interests. The best toys or equipment would be the ones your child likes and finds exciting. It is not what the toys are but how they are used that is important. Even a simple ball if rolled at a line of empty upright plastic bottles that get knocked down could be great fun provided the entire process of rolling and knocking down is done with cheering and excitement.

Initially let your daughter lead the play. Join her in her kind of play and then slowly modify and model play for her to imitate. Use toys like dolls and kitchen sets to enhance pretend play through imitation. These can be used by the speech therapist as well.

You mention in your letter that your child has ‘childhood autism’. It is important to be aware that though the term ‘childhood autism’ and ‘early infantile autism’ is sometimes used, autism is not a childhood disorder that ‘goes away’ as the child grows up. It is a lifelong condition. Of course it is also a condition in which there can be often great progress if the intervention is appropriate and early.

Q. I have a son who is three and is an autistic child. We live in Surrey in British Columbia, Canada. My son gets IBI treatment based on behaviour analysis at a school which has been supported by the provincial government. He has been showing some improvements in his behaviour.

The reason for this mail is to inquire about any schools, organisations in India that offer IBI to children with Autism. As we have decided to settle in India in the very near future, but as informed earlier, we are looking for schools/ organisations that have professionals trained in behaviour analysis so that my son keeps getting the intervention therapy.

A. There are a few schools in India that have IBI based teaching methods – more specifically Verbal Behaviour based. The ones we have information on are:

Dikshan
Autism Society West Bengal Kolkata
autismsocietywb@hotmail.com
Contact: Indrani Basu

SAI
Mumbai
kamini108@rediffmail.com
Contact: Kamini Lakhani

We Can
Chennai
wecantrust@rediffmail.com
Contact: Gita Srikanth

Q. My grand daughter aged 4 years is autistic. I read that milk may be one of the causes for autism. I have three questions.
o Is it only milk or the entire range of milk products like chhena, cheese, butter, curd or yoghurt that have to be stopped?
o If milk is stopped what replacement can be thought of to ensure proper nutrition? She does not like chicken soup or egg.
o How long should milk be stopped to determine whether milk is a culprit or not in her case and whether she is benefiting from withdrawal of milk.

A. If you are going in for a casein free (dairy free) diet you want to remove all milk products including cheese, butter, curd. You can give 'ghee' as 'ghee' does not have casein. You can use soya products such as soya milk, soya curd or 'tofu', nutria nuggets. However before you put your child on a casein free diet you want to discuss with her paediatrician as well as a nutritionist to ensure that your grand daughter is on a balanced diet.

Whether you put her on a casein free diet (or a gluten free diet), you want to record her behaviors before starting. When you start the diet ensure you are not starting any other therapy or intervention around the same time. Once she is on the diet continue to record her behaviours. After three months of the diet you should see some significant improvements / changes. Remember, your grand daughter will show some improvements anyway as she grows. There has to be very significant improvements for it to be credited to the diet. See also Autism Network Vol VII No 3 issue of December 2000 for more information on the subject.

Q. I have a son B, who has no speech. He is 14 years old and has a diagnosis of autism and I have been helped immensely in his upbringing by Autism Network since the last eight years. I have a few queries with reference to your issue of December 2003, Vol X, No 3. In the Helpline section of this issue you have referred to a set of four EASe CDs, which help children deal with sound sensitivities. Can you give us some information about these CDs and how to procure them? As my son is extra sensitive to some sounds, I hope they can help him.

B gets very upset when others talk normally among themselves, although he does not mind when we talk to him continuously. Can we do something about it? As we are staying in a small place in Orissa, we do not have adequate school or professional facilities here. So B remains at home and I am his parent, teacher and guide, all in one.

A. It is good to learn of the progress B is making and we are glad that Autism Network has been of help in this. When you say that your son gets upset when others talk amongst themselves, perhaps you could try and see if it has anything to do with his feeling left out of the conversation that leads him to acting upset? Without having all the details it is a difficult to guess what it is about the situation that makes him upset. It is only when we understand what is behind the behaviour, and also what is maintaining the behaviour, can one suggest a way to deal with it. However, some of the things you could do is try and include him in your interactions with others. Ask other members of the family to do the same. In addition, give him different non-verbal modes of communication: using cards or signs for instance. Being able to communicate will take care of a lot of difficult behaviours since much of challenging behaviours are often a mode of communication.

Regarding the EASe CDs, the CDs are available from Vision Audio Inc, 611 Anchor Drive, Joppa, MD 21085, USA Tel: 001-888-213-7858. They can be ordered over the internet from their site http://www.vision-audio.com

Q. We are parents of a three-year-old son diagnosed with autism from Hinduja Hospital. We have been running from pillar to post and are feeling helpless. We have given him occupational therapy for more than three months but there is no change. Now his therapist has told us of a new treatment for autism called G-therapy. Please advise and guide us. Will the medicine G-therapy make him lead a near normal life?

A. Occupational Therapy is certainly helpful particularly when it takes the individual child's specific needs into account. The therapist is probably doing sensory integration which can be very helpful.

Perhaps you want to discuss with the therapist what exercises are being done and most importantly why. You know your child best and can give the therapist valuable inputs. However I must add that occupational or sensory therapy in isolation is not an appropriate treatment option. As you must be aware a diagnosis of autism implies impairment in communication and social skills. Occupational therapy will not teach him communication and social skills, though under a good therapist it can enhance his ability to learn these skills. Your son needs special education in addition to the therapy he is currently receiving.

Please get in touch with the support group Forum for Autism (details elsewhere in Helpline). They will be able to give you information on services available in Mumbai and Pune. With appropriate therapy provided early and intensively some children with autism can come to leading a close to 'normal' life. By which it means that they will be able to participate in day to day life without too much additional and specialized support.

Many parents have asked us about G Therapy. But I am afraid G therapy will not accomplish this. Neither is G therapy a new therapy. It has been advocated by one individual in Pune for more than ten years. While it may have its merits no studies have ever been carried out to judge its efficacy. Neither are there any families who have used it long term and reported any remarkable improvement.

While it is a fact hard to accept, the truth is that there are no medications that can 'cure' autism. Not in allopathy, not in homeopathy, not in ayurveda, despite claims that are periodically made. The only effective treatment is structured teaching and therapies that address the impairments.

Q. I am the mother of an autistic boy aged 9 years, based at Chennai. I would like to start the CFGF diet for my son. I request you to answer the following questions:

1. Is there any pediatrician/doctor in Chennai, who knows about the Dan protocol, and CFGF diet and can guide me? If so, please give me their address.

2. Is the peptide testing done in India (especially in Chennai). If so please furnish their address.

3. What is the diary alternate that is available in our country? I read even soya milk contains gluten. Is rice milk available here.

4. I am a South Indian, vegetarian. Rice is the major component of our food. I would like to have a list of gluten free grains/cereals that can be used. I would also like to know if vanaspati/dalda can be used for cooking.

5. If you have the address or e-mail of parents who follow the CFGF diet in India, especially in Chennai, please give them to me so that I can get their views.

A. 1. We do not have information on physicians in Chennai who have information on the diet though I am sure there must be some who do. Perhaps you could check with your son's pediatrician.

2. The same goes for the peptide testing. We really have no information on places in Chennai doing it.

3. Soya is indeed considered the dairy alternative available. However as you yourself observe it is now believed that soya too contains traces of gluten. As for rice-milk parents make the milk themselves. If your child is not particularly keen on milk and otherwise eats a range of foods I don't think you need to worry too much about the consumption of milk. However, ensure he gets a balanced diet.

4. South Indian vegetarians are the luckiest! Their diets are largely gluten free!! Even your savouries like murrukkus are gluten free. For a list of Cereals and grains please check out Autism Network Vol VII No 3 December 2000.

Vanaspati, dalda as well as ghee are all GFCF. Ghee though, derived from dairy, is casein free.

5. We don't have a list of families following a GFCF diet. However we will forward your mail to parent groups and ask them to get in touch with you if there are parent members who follow the diet.

I hope these answer your queries. Finally may I add a note. Follow a GFCF diet for your child if you can. The diet may or may not help. Those who do report changes usually find small ones. There will not be a miracle. But whether you follow the diet or not you want to focus strongly on structured behavioural teaching. That is really what will give results.

Q. My daughter Sharon, is three years and six months old, but has still not started communicating verbally. Non-verbal communication is also limited. A year ago, when we visited the Child Care Centre, Cochin, they felt that she has Attention Deficit Hyperactivity Syndrome. But since she shows autistic characteristics, I feel that she has Autistic Spectrum Disorder/ PDD at a moderate level. I would like to get a complete diagnosis and to start treatment and early intervention for her. In this regard, can you please let me know the facilities available at Bangalore or anywhere in South India for complete diagnosis and treatment/ early intervention, the special schools, etc.

I would also like to know the sources of websites for information regarding GFCF foods in the Indian context. I have already seen many websites regarding GFCF in a western context.

A. You are quite right in wanting a diagnosis as early as possible as early appropriate intervention is always helpful. Since you indicate that Bangalore is a city it is possible for you to visit, the best place for a diagnosis would be NIMHANS. At NIMHANS families are also provided with a comprehensive program for early intervention.

For information on GFCF diet there are many sites but as you have noted they are written by westerners. We do not have information on any Indian GFCF site. If any of our readers have information on such a site perhaps they could share the information. The December 2001 issue of Autism Network carried an article on GFCF diets for children with autism which you might find useful.

Q. May I have the recipe for Soya Milk.

A.The recipe for Soya Milk is as follows:

- roast soya milk at 80 deg Celsius for 20 minutes
- soak for 8 hours
- grind into paste
- add 5 parts of water and boil
- then sieve it through a fine cloth
- add water to make it of milk consistency and refrigerate.
When serving add sugar or any flavour for taste.

Q. We had the great chance of attending the Action for Autism training workshop at Disha in Jaipur from 5 -7 April. I also went through your book: "Compilation of Reading Material" and the December 2001 issue of "Autism Network" and found them a very good guide for parents like us whose child has been recently diagnosed with Autism.

For my four-and-half-year old son, I would like to go for Megavitamin Therapy, and seek your guidance on the following points:-
1. For Vitamin B6, the daily dose of 17 mg per kg of body weight is advised, at what time of day should this be given, and is it only once a day, or may be given in doses throughout the day?
2. The best pharma company for DMG in India or USA or UK?

A. Thank you for your kind words about our workshop at Jaipur. Regarding Vitamin B6 it can be given at any time in the day. But the times remain the same. So if you give it around eight in the morning after breakfast, try and give it around that time each day. It can be given in two doses; but not sure if it would be advisable to break it up into too many.

I suggest you write to the Autism Research Institute directly and query them. Their web address is:
http://www.autism.com/ari
and postal address is:
4182 Adams Avenue, San Diego, CA 92116, USA.

The company in the USA that supplies DMG is:
Kirkman Laboratories,
Post Bag No 1009 Wilsonville,
OR 97070, USA
Tel: 503 694 1600, 503 694 1603,
Toll Free 800 245 8282.

To the best of our knowledge there is no company in India that supplies these food supplements. Send an SASE to the AFA office to receive a sheet of information material on the subject. In addition, you will find an article on the subject in Autism Network Vol VIII No 3 of December 2001.

Q. Your article about Sensory Integration Therapy in August '98 issue was useful and interesting. Please let me know the names of any Sensory Integration Therapist in South India or in any other part of the country.

A. SIT is an interesting and possibly useful therapy for individuals with sensory sensitivities. The demand for this therapy is increasing throughout the world and is used with people with autism as well. We have found in our experience with people with autism that though this therapy may help, it does not address the main areas of affect, which are communication and socialization. The exercises involved in the process can be enjoyable and fun. But for your child's development it is crucial that he receives Behavioural Therapy in a structured environment on a regular basis. You could do the different exercises for SIT at home using things available at home in the most inexpensive manner. However as a parent, the decision is yours finally

We do not know of any therapist who does only SIT but the Spastics Society at Chennai should be able to give you a reference.

Q.  My eight year old daughter has been diagnosed as having Asperger's Syndrome. These days she seems to scream a lot.  Any question she answers with a scream. When she is happy also she screams. When she is upset, she screams. Formerly she used to scream, but after her exams finished, and we went to Bombay and came back she did not scream for about a month. But once I just shouted at her mildly, and now her screaming has increased to more than before.

There is a gentleman who has done Ph.D in music and is also in the education field and has read a lot on the subject.  He has started music therapy on my daughter.  If you have any information on this, regarding its use in behaviour modification or increasing concentration, could you please send it.

A.  As for your query, regarding your daughter, many a time such behaviour like the screaming are done purely to get a reaction.  You must give a thought to whether or not you react to her screaming. If she is getting any attention for it (even a comment, about it later on can be enough attention sometimes), then chances are that she is going to keep doing it. What you will need to do is IGNORE her COMPLETELY whenever she screams, but pay her a lot of attention and praise her a lot when she is quiet. And praise POSITIVE. Instead of saying 'Oh Good! You're not screaming', you want to say 'Oh Good! You're sitting quietly!'

The important thing to remember will be to be very consistent and very persistent. Please don't give up in a week or even two. This has been going on for quite a while, and chances are that its going to take a bit of time before it subsides, but we can assure you that it will.

When you are responding to a scream, there are two things at work here. a) We are reinforcing negative or unwanted behavior, and b) we are losing an opportunity to teach her an appropriate way of responding. If she screams a request at you maybe you could tell her, 'If you want water say 'Give water'. " And CALMLY wait until she does do. If she does not respond in the way you have requested, it is very important, that you don't finally give in to her want.

Music therapy need not be a therapy on its own but can be incorporated in with other teaching methods. I'm sure your daughter might be very fond of music - use it as a reward. Also use it whenever possible in the instructions you give. (Sing them out to her instead of speaking, the chances of her responding will be higher!)  If you know someone who has enough knowledge about the disability, and is willing to teach  your daughter an instrument, or just spend time with her playing some music, then that  would be a great idea to explore.

Q. This has reference to ‘Help Line’ column in the December ’96 (Vol III, No 3) issue of ‘Autism Network’ in which you have answered a question regarding Vitamin B6 and DMG therapy for autistic children. You have, in your answer, stated:

“….Over the last few years many families in India too have been obtaining the preparations from overseas and giving it to their autistic children. Some have been formulating it here on the basis of Dr Rimland’s suggestions.  Vitamin B6, also known as super Nuthera, and DMG are food supplements…”

I have an autistic grand child on whom we would like to try this therapy, but these preparations viz. DMG and Super Nutera have to be imported from the U.S. and are so exorbitantly priced that they are not within the reach of a middle class Indian.

I would like to know:

1.  Whether preparations equivalent to these made by Indian pharmaceutical manufacturers are available in India.
2.  If the exact combination/formula made in India is not available, can we make this combination by buying the individual drugs from the Indian market?
3.  Whether DMG is available in the Indian market?
4.  An Indian pharmaceutical manufacturer markets ‘Glutaneural’ tablets containing 0.5 m.g. of L(t)Glutamic Acid, U.S.S.R.P and 3 mg of Thiamine mononitrate I.P. in each. It has been found to be useful in certain conditions such as mental retardation, oligophrenia, involution psychosis, cerebral injuries, hemiplegia, grandmal and petimal epilipsies, mongolism, scholastic backwardness, intellectual fatigue etc. Dr Srinath could not advocate its usefulness in Autism, but she stated that it could be given as a trial to autistic children. Can you give your opinion regarding Glutaneurol to be given to autistic children?

A. Here are answers to your questions, in numerical order.

1.  To the best of our knowledge no preparations by Indian Pharmaceutical manufacturers equivalent to DMG and SuperNuthera are available in the Indian market.
2.  Dr Bernard Rimland has suggested specific individual drugs available in the Indian market from which Super Nuthera can be formulated. We however do not not have any suggestion from him regarding DMG.
3.  See 1.
4.  I completely agree with Dr Shobha Srinath. Unless and until exhaustive clinical trials have been conducted on a trial group with a specific drug - which to my knowledge has not been done with Glutaneural - it is not possible to comment on its usefulness or otherwise. Whether you want to try it out on your grandchild will have to be your personal decision.

As parents/grandparents we want to try out every therapy that might have even the minutest possibility of helping our child. However the only therapies that can definitely help our children are those based on the behavioural model.

Q. My son is eight and has been diagnosed autistic.  Should I give him Vitamin B6 and DMG?  They are strongly recommended by Dr. Bernard Rimland.

A.  Vitamin B6, often packaged as Super Nu Thera, and DMG are food supplements.  They have not been found to have any negative side effects, in contrast with drugs.  In the various studies conducted, reports of which are carried in the Autism Research Review International by Dr. Bernard Rimland, both preparations seem to give very encouraging results.  The ARRI frequently carries letters from very satisfied parents.  Over the last few years, many families in Indi, too, have been obtaining the preparations from overseas and giving it their autistic children.  Some have been formulating it here on the basis of Dr. Rimland's suggestions.

Feedback suggests that for some reason none of our children appear to derive any particular benefits from the formulations.  Given that so many children in the US appear to show quite remarkable changes after the administration of DMG and Super Nu Thera, it is surprising that our children appear not to gain at all.  However, we have a theory that might explain why.  Children in developed countries consume food that is polished, refined and highly processed; healthy food but deprived of many essential nutrients because of heavy processing.  On the other hand, we eat food that is less processed, thereby retaining much of its natural goodness.  For instance, so many fresh fruits and vegetables and home cooked foods.  Few of us eat food out of tins.

If we were to make a guess, we'd say that for Western children, Super Nu Thera and DMG help replenish whatever is lost in the processing, whereas Indian children get the vitamins provided by these products in their normal diet.  We invite our readers to share their ideas on the matter.  Also, if anyone has been giving DMG or Super Nu Thera to their child with a positive feect, do write and let us know.  But ultimately, if you want to give the supplements to your child, the decision rests with you.

Back to top

Other and General Advice

Q. I have consulted the doctors at Nagpur, and they have diagnosed autism spectrum disorder for my son. They say it is in the middle order. I started the treatment for about five or six months, and now I do not have any facility in my hometown for the same. He is not sitting in a place for long time. He is running around and saying only few words. Can you suggest any type of treatment?

A. It is helpful to have more information on the child, like your son’s age and current skill levels, and what you are already doing with him. However, here are some things you could do. Have fun with your child. Sit for short periods, do things he likes, maybe tickling or singing a song to him. Play with your child so that he starts looking at you as a person who is fun to be with. Try and do fun activities with paint, water etc so that your son begins to equate learning with fun. Keep something that your child likes, an interesting toy or a small treat like tiny pieces of kurkure/ chips. Give him a simple instruction, eg. ask him to put balls (about two or three) in a container. As soon as he puts one ball in praise him and give him the toy or treat immediately. Here the child is learning that when I do this, something nice happens. If your son will not follow the instruction, then induce compliance hand on hand. That is, you give the instruction, .put in., and place your hand over his, guide his hand over the ball, clasp his hand over the ball, lift his hand with the ball in it, and release the ball in the container. And then be excited and praise him and give him a small piece of chip immediately. Try talking slowly, using a minimum of words while giving an instruction, breaking up instruction into small steps. So if you want him to get up and put a plate in the kitchen sink you can break it up into the following steps:

‘Stand,’ ‘Pick plate,’ ‘Put in sink.’

Try to keep instructions clear and precise. Label the things the child is doing for example if he is jumping, you can say ‘jumping.’ If he is using words to ask for things he needs, then give him a lot of praise when he does and give him what he is asking for immediately. If he is not, then provide for him the exact words that he would need to use. So if he brings the biscuit tin to you, rather than saying, ‘Oh you want biscuit? Here you go,’ and then give him a biscuit as we usually tend to do; just say ‘Biscuit,’ and hand a biscuit to him. When your son is running around rather than saying, ‘Stop running’ you could say ‘Sit down’ or ‘Sit with Daddy.’ So you tell the child what to do versus telling him what not to do.

Q. I am a government servant working in UP cadre. My son is 10 years old and has mild autism. He is hyper and lacks wisdom. He has delayed speech and repeats words. He always carries an empty bottle in his hand which he hits against things. He sleeps in the day and wakes up at night. He watches a lot of TV. Please suggest relevant therapy, institutions, and hostel (if available) in India.

A. We understand your concern for your son and hope to guide you as much as we can. First, a little about the autism spectrum. As you may already be aware, Autism is a lifelong developmental disorder, which is characterised by three core difficulties. The concerns you have identified fit these three difficulties. For instance, delayed speech can be quite typical of children on the spectrum. This may be accompanied by odd or formal speech or unusual use of words and phrases. Holding on to bottles, banging them on surfaces (preoccupation with, and non-functional use of the item, or fulfilling a sensory need by hitting the bottle), and different sleep patterns may be considered a form of ‘inflexibility of thought and behavour’ which is again, a core deficit seen in individuals with Autism. Thirdly, a different quality of peer interaction and social interaction in general is also a core difficulty.

It is quite subjective to classify Autism into mild, moderate or severe as each individual shows a different skill profile. So while your son may excel in one area, he may be behind on others such as speech and language. Another child with the same diagnosis may have great language but may score differently on other abilities. It may therefore be more useful to isolate each strength and difficulty and to see how to use those strengths to push your son’s development further.

As you mention, the next step for you would be to find a trained autism therapist with sound understanding of your son’s difficulties and to begin a training programme based on his individual needs and strengths. In UP we know that the King George Medical Hopsital in Lucknow has a programme for children with autism. We currently do not have information of other institutions and therapists from UP, though there may be a few others.

You may also arrange to visit us in New Delhi for a three day extended programme to assess your child’s abilities and to start you off on a basic programme.

While there are not many residential facilities in India for young children, we will send you the list of facilities we have with us. We however recommend highly that parents and families are fully involved in their child’s educational programme, whether at home, school or at any other facility.

Q. My son RM is 18 and currently studying in a special school. He was a caesarian baby and his milestones were normal except for a big forehead which was noticed by doctors when he was about nine months old. Immediately various tests were carried out and he was examined by a group of neuro-surgeons and neuro specialists. AIIMS advised that he has mentally subnormal and referred him to the child guidance. We visited the child guidance units for nearly three years after which they advised to send our son to an integrated school. We put him in an integrated school when he was four years and initially he learned to read, write, both English and Hindi and some basic math. After a few years the school stopped giving much care to the unit for special children beyond the usual repetitive reading and writing. At this time RM began to love and worship Lord Hanuman and regularly began singing the Hanuman chalisa, Amritavani etc. He picks up tunes of devotional songs and film tunes with remarkable accuracy. We shifted him to a new school and for the last two years RM is in the school hostel. But there is not much progress.

RM has poor eye to eye contact, poor response. He is always in his own world and unconcerned about others around, and not willing to play. He gets irritated and beats crying children. He is not violent but if he does not get his wish then he becomes moody and aloof. He operates the radio and TV and watches mostly religious channels. He can operate the computer and sometimes play on it or listens to music. But his writing is odd and not sensible. He repeats the words and speaks unfamiliar language but obeys commands and understands what we say to him. His IQ level reported is 54%.

A. RM may be having difficulty in expressing himself in an appropriate manner. When hitting children who are crying, he maybe actually communicating that the crying bothers him. It could be sensitivity to the sound or an inappropriate emotional response. He needs to learn an alternative way of coping with the situation. He can be trained to cover ears or move away when a child cries. He also needs to know that sometimes people cry and that it is okay.

Making and sustaining eye contact is often very painful for people on the spectrum. Rather than forcing him to look, reinforce his looking with praise or attention. Interact with RM at his level. This means do things he likes, let him take lead in the interaction. It could be through singing/ chanting/ puja. You can ask him to help you by putting the computer or the music system on for you. Acknowledge and praise his compliance.

RM’s difficulty in engaging in play with others is typical of people with autism: they find it difficult to interact with their peers. Games are difficult because they involve social skills like turn taking, waiting, reciprocity, understanding rules of the games. Playing within a small group, of two or three persons, maybe easier. At the start the games chosen too will have to be simple like ludo or snakes and ladders.

RM seems to have a good rote memory and has therefore learnt Mantras and Chants by rote. At present he is around 18 years and many of his behaviors like being aloof and moody maybe a result of his age: many typical boys also behave the same way at this age. RM will need sensitivity and acceptance to weather this stage in his life. At the same time given his age, priorities have to be set with a focus on functional and pre vocational skills. We do not have information of any place in Delhi that has a residential set up for people with autism or Mental Retardation. However, there are residential places in Una in HP, Dehradun and in Bhopal.

Q. I was reading autism network issue for the month of August 2004. In this issue there is an article by Ashwini Chaswal about income tax concession (80 DD of Rs 40,000) to parents of children with disabilities. Does this apply to children with autism and those with PDD-NOS?

A. In the recent finance budget of FY 2004-05 Autism has also been included as a disability for which income tax rebate U/S 80-DD and US 80 U shall now be available. 80 DD (with similar retrospect for 80 U) allows for income tax rebate to a person who has a disabled dependent. The amount of deduction allowed is divided into two categories viz. Rs 50,000 for disability between 40% to 80% and Rs 75,000 for severe disability above 80%. Norms have been set based on IQ levels to identify the percentage of disability in case of mentally retarded dependents.

We still need a criteria for issuance of a disability certificate stating 'autism,' but it is not yet clear how the 'percentage' of disability is to be determined. Apart from the fact that to determine IQ in persons with autism is difficult and requires a high level of expertise, IQ alone in autism does not always indicate level of functionality. Therefore one can try and get a certificate from a government hospital, but the deduction in the tax will depend on the results of the assessment that must state the percentage disability (measured on basis of the IQ).

Q. I got this information from your web site autism-india.org regarding Income Tax Relief U/S 80DD for Parents/ Guardians of Persons with Disabilities. Kindly let me know if the disability certificate has to be specifically got from government hospitals only or can the certificate can be got from private hospital doctors.

A. We understand that the disability certificate can be had only from government clinics and hospitals.

Q. My three and half year old son has a diagnosis of autism. He has little eye contact, and does not respond to his name. He is able to speak only a few words, otherwise he is a little hyperactive. He listens to music and sometimes likes to play with his elder brother. I would like to get the details of how to train my child. It would be of great help if you could send me the books on how to train my child, teach him to speak books on how to teach him to speak, and books on neuro development therapy.

Since we are in Coonoor, a place far away from the city, we do not have any special schools run for autistic children. So it would be of great help to us if you could keep me informed of the latest developments, and help us to train our child at home.

A. Regarding your concerns about your son now is the time to provide him with the best possible intervention as early intervention can show very good results.

An appropriate program for the child would be the one that addresses his specific needs and it can be best planned after doing a detailed functional assessment of the child. Nevertheless, we can suggest reading material that will help you to be more aware of his present needs. As he is speaking a few words and has little eye contact it will be beneficial to focus on his communication, activities of daily living (toilet training, dressing, eating etc.) and play skills. We know that many families have worked successfully with their children at home due to dearth of services and surely you must be doing the same. It shall be important for you to receive the right guidance as to 'how to teach' because this is more important versus 'what to teach.' You can get in touch with a suitable center and maybe visit them periodically for a continuous program. We could provide the same if you could visit us once. Thereafter we could correspond over the mail.

In starting to work with your son in a planned manner we would suggest that initially you have lot of fun with the child, join him in things he likes to do. This will help in bonding with him. We always want to remember that with an autistic child it is important to go with his interest versus forcing him to take interest in what we think is important. Therefore, in the beginning play and interact with him using his own likes and strengths and slowly put simple demands on him. For every little compliance that he shows, reinforce by giving him things he really likes and gradually he learns that doing things on other people's request is followed by reinforcement.

For example, we ask a child to put a block or a bead in a container by modeling it for him and saying "do this". The moment he does it we give him whatever he likes most. It could be a favorite food item, toy, any other favorite item. If he does not follow the request we can gently assist him by holding his hand and helping him to pick the bead and put it in the container and then give him the reinforcer and let him enjoy it. The child will soon learn that when he imitates your simple actions on the verbal command "do this", it is followed by something nice. It would be great if you can observe such sessions of work taking place with other children.

The names of some the books that you can benefit from are:
o The Me Book - O Ivar Lovaas
o Behavioral Intervention for Children with Autism - Catherine Maurice
o Pre school Activities - Toni Flowers
o Teaching Activities to Children with Autism - Eric Schopler
o Autism - Explaining the Enigma - Uta Frith
o A Compilation of Reading Material by Action for Autism - Action For Autism

The first four books help in planning an individualized program for the child. The fifth book deals with understanding autism and the last one of this list is our own compilation of useful reading material for understanding and teaching persons with autism spectrum disorders. You can also visit our site at http://www. autism-india.org

Q. A is a six year old boy from Kolkata. He has been diagnosed autistic. He is being treated for delayed speech and ADHD. He receives speech therapy and is being taught at home by his mother and grand parents.

He is showing exceptional skills in arithmetic and language. We have taught him only the alphabet and numbers and nothing more, but he is writing sentences comprising difficult spellings without any mistake. He is also performing long additions and multiplications which are difficult without a calculator. He simply looks at the problem on paper and writes the correct answer within moments. He has not been taught any of these by us and the doctors are unable to explain the phenomena. He is attending a normal school as he lacks speech. We are at a loss to decide as to what to do for the proper nurturing and development of his talent.

I am working in Doha, Qatar where no special schools are available. I plan to bring them to Doha but this problem is delaying our decision.

A. From your account it appears that A may have some exceptional skills that are quite often seen in individuals with Autism, known as savant skills. People with savant skills may excel in one or more area, in particular, in mathematical / calendric calculations, music or art. Researchers have proposed many reasons for the emergence of these skills, however the most acceptable explanation is that individuals with Autism are able to focus on one area phenomenally well due to the very nature of Autism and its core deficits.

In addition to this, it appears that your child is also exceptionally gifted in literacy skills. However, it is difficult to say how far a savant skill this is, as it could well be related to hyperlexia (an ability to read beyond one's level of comprehension) or an exceptional memory for words and sentences. If your child is being worked with following any particular intervention at home, perhaps his skill in literacy and numeracy could be tested in a variety of situations and his strengths assessed. It would be ideal for you to take your child to a specialist school for a full functional assessment of his skills.

There are currently no specialized centres in India for the development of savant skills. However, with the guidance of a special educator who has a sound understanding of autism you could hone A's skills using appropriate training methods. This needs to be carried out within the framework of an individual education plan that is based on his needs and learning style.

As A lives in Kolkata, you could contact the Autism Society West Bengal where you could receive training and guidance. In the meantime, we suggest you focus on developing alternative modes of communication for your child. You will need a special educator with experience
of Autism to guide you. Speech therapy may help your child but success is limited within the Autism Spectrum.

Finally, If your child is on medication for ADHD, do ensure that he has been diagnosed with ADD or ADHD. Many individuals with Autism present hyperactivity due to reasons related to their autism, rather than clinical hyperactivity that may also be found in typically developing children. In such cases, medication may only be a temporary solution that will enable you to work with your child following appropriate training methods.

Q. I work in a special school and have two children with autism in my class. Sometimes I am not sure how to teach them. Do you hold any short training workshops or courses?

A. We hold very comprehensive workshops before or after Dussehra in Delhi each year, as well as a few at other times in the year. They are either given by teams from AFA in which case they are practical in content focussing primarily on training attendees on how to help persons with autism on a day to day basis. Or they are given by visiting professionals from Europe and the USA in which case they are wide ranging in their focus covering medical as well as educational issues. We also give workshops on request around the country - which are usually organised by the local Parent Support Group and supportive professionals working together. The AFA web site at: http//:www.autism-india.org has information on upcoming workshops as well as back issues of Autism Network in which you may find answers to some of your concerns.

Q. Have you come across anybody who got properly treated, cured or outgrew this.

A. Autism is a lifelong disorder. You do not get cured of it. But there are many individuals who have progressed to an extent that you would not know unless told that they have autism. They are able to function appropriately in their environment. Every child with autism who receives appropriate help will progress. We have seen children travel amazing distances. However some will progress more than others will.

Q.  We have set up a daily routine for our son.  We want a few suggestions on how to structure the day for an autistic child.

A.  It is wonderful that you have set up a daily plan for your son and are trying to implement it to the fullest.  Children with autism require structure in order to give them a feeling of control and sureness.  They enjoy structure in their environment.  At the same time, to help their rigidity and compulsive need for sameness, it is good to have variations within the routine.

Try to have a routine for the basic daily activities.  Have regular times for meals, bath and bedtime.  As your son goes to school in the mornings, set aside a few hours in the afternoon when you are free from household chores to be with him.

As you are just beginning to set up a schedule of activities with him at home, you do not want to view that time with him as "time to work."  Start with having fun--play tickling games, sing and clap-- basically whatever will get him to enjoy sitting with you for a few minutes when you want him to.  As you slowly find your time with him increasing, structure that period with a mix of the quiet and the active.  Follow a period of sitting down with a period of jumping activities and so on.

It will not be possible for you to keep your son occupied all day, but you could try and involve him in household chores.  For example, you might have a time when you collect your washing after it's dried.  You could say, "collect washing."  Take along a basket/clean bucket and help him remove the washing from the line and place it in the bucket.  Simplify the process to accomodate his attention and ability:  use methods learnt at the workshop!  So then you have a "time to collect the washing."

An important part of the child's routine is bed-time.  Most children with autism appear to have irregular bedtimes and erratic sleep patterns.  Whether your son falls asleep or not, or even remains in bed or not, prepare him for bed at a regular time each day.  You could give him a nice warm bath before dinner.  After he's eaten he can change and be put to bed. Read a little to him every night.  It does not matter whether he appears to listen or not. Read anyway!

Your son could be helped to adjust to a routine easier if you could provide him with visual cues to his daily schedule.  You could have cards for each activity.  Simple line drawings will do.  Howvever, if drawings do not make sense to him you could use photographs of actual situations to help him understands what happens next.  For instance, an actual photograph of him in the bath can be used for 'bath-time,' dried clothes in a basket for 'collect-washing time' and so on.  A further advantage of using schedules is that if for any reason an activity has to be suddenly omitted one day, he can be shown that it is not on the schedule.  This is quite an effective was of taking care of any possible distress over change in routine.

A final suggestion and something that is possibly already being done:  ideally, both parents share in the activities with the child.  Mother can help him with lunch, father with dinner for instance.  The variation will be good for him.

Back to top