N E T W O R K

April 2002 Vol. VIX, No. 1

Page One

The AFA team had a wonderful experience on their recent visit to Pune to give a workshop. We met some remarkable parents, special educators, speech therapists and physicians. We were particularly taken aback when confronted by leading physicians who admitted that they did not know much about autism. And it was truly heartwarming when on a lazy Sunday morning paediatricians, psychiatrists, and clinical psychologists willingly came together to discuss the core behaviours that fit the diagnostic criteria for autism. AFA gives special thanks to Dr Charudatta Apte who inaugurated the workshop with a thought provoking speech and Dr Dilip Sarda who convened the meeting of physicians with Action For Autism.

Each one of us who work in any capacity with persons with autism must continuously update our knowledge about the condition. However we are also aware that this is a population that has difficulty in imitation and generalisation; that they do not learn from repeated verbal instructions the way for instance children with mental retardation do. Most of them are visual learners, many have an impaired theory of mind, and their learning styles are often very different from the norm. In view of this AFA has developed a training course for teachers of children with autism. So have the KPAMRC. Both have been running these courses for several years. Action For Autism has been urging the Rehabilitation Council of India (RCI) to either recognise these courses, or introduce a special education course for children with autism in line with those for cerebral palsy, mental retardation, multiple disabilities among others. The RCI sponsored a course in Chennai to gauge the 'need' for such training. Some of the conclusions that the experts arrived at were reiterated again at a meeting in Delhi. Let me state some of these:

• 75% of persons with autism have mental retardation so there is no difference in handling between MR and autism.
• Those trained in MR are well equipped to manage children with autism.
• Special Educators trained in autism will find it difficult to find any placement. Having a separate training in autism will be a 'human resource mismanagement' and 'waste the existing resources'.
• Autism is too rare a condition affecting only 2 in 10,000 to merit an autism specific training course.
• A specialized course is irrelevant as "No one is sure" what autism is. "Some say it is a 'communication disorder', others that it is a 'sensory disorder', Temple Grandin now claims it is a 'movement disorder'."

I leave it to the reader to judge the level of understanding of autism from which such observations stem and merely add that it quotes Grandin out of context to make a point she never intended! Temple Grandin's first person accounts as a person with autism gave me invaluable insights into my son's world. It is a sentiment shared at different levels by many persons with autism, and their carers.

The need for trained teachers is urgent as growing awareness sees more children receive an appropriate diagnosis of autism. The autism community will have to take an active stand to ensure that government bodies take appropriate measures so that the future of our children do not continue grim.

Working with kids with autism teaches us to redefine intelligence. Intelligence no longer means what one thought it meant. In fact it is not only a different way of looking at things but a more liberating way as well where one is no longer tied down with assumptions.

Let us all work together to help these unique people and try and understand their unique modes of communication so that they too can be helped to learn ours.

Play Skills, Part II
Indu Chaswal
(continued from Autism Network Vol VIII, No 3 December 2001)

In the last issue of Autism Network, the second article on 'Play' suggested some play activities and simple games to help parents and carers spend time with their children in an interactive way - and through which children also learn to keep themselves occupied. In this issue we include some more activities and suggestions on how to introduce our children to the wonderful world of 'Pretend Play'. These activities have been developed keeping in mind the difficulties and strengths of our children in areas of socialization, communication, motor and cognition, imagination, and also sensory processing and integration.

More activities

• Most children like to play with water. Take a half bucket or small tub of water. Give the child things to throw in the water (like pebbles/marbles/air filled toys and balloons).
• Conversely, objects could be placed in water and the child directed to pick things out of the water. The water can be coloured for interest and variation. If the child likes smell, add a scent.
• Some children like the sensation of soapy water on their hands. Others enjoy looking at and feeling the lather. Prepare lather in a tub, let the child find objects hidden in the water under the lather, and collect them in a container.

Variations in ball games

• Start with soft/light balls to prevent hurting the child as well as for children who have a fear of a ball coming at them.
• As you play with the child use words like "throw", "catch", "kick" etc. which would also enhance communication.
• Work on one skill at a time.
• Physically assist the child from behind to catch/throw.As skills at throwing and catching develop, the child can be taught to aim at a target.
• We have to keep in mind the need for visual and verbal clarity in these activities. Arrange the game so that the child knows what he has to do. Have a demarcated 'starting' point, show the 'ball', indicate 'where' it is to be aimed such as in a basket, at a bottle, or at bowling pins or a coloured patch on the floor. Demonstrate the entire sequence of actions two or three times.

Interactive games
Most children find pleasure in playing with parents and siblings. Games can therefore be devised to enable the child to learn social skills like turn taking, waiting, imitation, joint attention and shared attention.

• The games can be simple for instance rolling a ball to another person.
• For an interesting variation, instead of a ball empty tins filled with rice, dal, marbles or pebbles that will make varied sounds can be used
• If required the child can sit on the lap of an adult, or another person can be behind the child to facilitate
  
  Activities could include the following:
  
  
• Take turns to blow out candles.
• Take turns to blow bubbles through a straw in a soap solution.
• Take turns to shake a bottle of water, with coins and shiny objects in it.
• Sit in a circle on the floor. Pass a toy or a small cushion around singing the child's favourite song. When the song ends the person who has the toy/cushion has to do whatever the leader says.

Requests have, of course, to be at the level of the child. If when the music stops the object is with an adult, then too the request has to be something simple that will be of interest to the child. Not things like "say the multiplication table of 8" if the child has no interest and/or understanding of multiplication.

• Draw circles on the floor and take turns to jump in and out. If the child has difficulty in jumping help him. Or else just "Step (instead of jump) in the circle" and "step (instead of jump) out".
• Have different shapes (squares, circles and triangles) and reinforce the concept through such a game.
• "Poshampa Bhai Poshampa" ("Oranges and lemons") and "Ring a ring of roses" are activities that most kids enjoy.
• For children who have learnt to sit and attend introduce simple board games like ludo and snakes and ladders. To start with prepare your own boards:
• Simple Ludo: A game for two players. Each player has only one counter. Prepare your own dice by covering a block or the original ludo dice with white paper. Mark three of the six sides with one dot each, and three of the remaining six sides with two dots each. There are no obstacles in the game.
  • Once the child is comfortable taking turns and waiting for his turn with this simple game, you can move to the somewhat more complex common ludo.
• Snakes and Ladders: A shortened and simplified version of the game using fewer snakes and more of the ladders.
• Prepare interesting card games. One suggestion: make about 5 sets of cards, each set having 3 identical pictures. For example - have 15 blank cards, draw a red circle each on three cards, a green square each on three cards, a blue semicircle each on 3 cards, a yellow triangle on another 3 and a black diamond each on three cards. Then shuffle and deal the cards between the child and another person. Each of them has to place one card at a time on a tray or a discarded mithai box cover (structure!) placed between the two of them.
• When a player places a card that matches the one before it, all the cards on the plate go to the player. The one who collects the most cards wins. This game can precede learning how to play cards.
  
  Pretend play
  Pretend play in children start developing between 10 to 18 months of age. When a child has Autism, there is a marked impairment in this area. Autistic children have limited imagination and therefore they play in a stereotypical manner. But we can help them to develop these skills. We start with real objects in pretend acts, and then use symbolic objects, which are quite different from those in reality. We can start with real objects for instance:
  
• Take an empty cup or a pepsi or coke bottle. (Though not the best of drinks for our kids they are an universal favourite unfortunately!) Pretend to drink from it. Make it silly and enjoyable for the kid. Place the bottle at the child's mouth and say "Raju is drinking pepsi. Yum!"
• Take a toy car and make traffic sounds. Make it fun!
  
  We then move to symbolic objects:
  
• Take an elongated object like a bowling pin and pretend that it is a pepsi bottle. Take a pencil box and hold it to your ear and say "hello" as though you are on the phone. Get the child to do the same. You may need hand on hand prompts.
• In teaching a child to be involved in symbolic play, it is more effective when we set the stage and use situations that the child is familiar with. For example:
• Fit a small pipe to a box and then place it at the toy car and say "Filling petrol! Let's pay money".
• Place two steel tumblers at a distance of two feet from each other. Place a plank of wood across them and run a car on it. "Car on a bridge". Or let it go "Under the bridge"
  
• Doll play can be very creative and the child can relate to activities like feeding the doll, bathing , combing, dressing it etc.
  
  The important thing is to set up the play and lead it. Let the child just do a few things on your request. Later, increase his participation and eventually work towards him setting up things on his own. Pretend play can be taught between two children as well. It can work very well with a regular sibling or a friend if we have prepared the typically developing partner of the child with autism.
• Seat two children side by side giving each separately an identical set of toys. Get them to do similar sequence of activities using the toys. In the next step give them the same set of toys. Help them take turns in the same sequence of activities.
• Let's take the example of a pretend birthday party using a small cake or pastry, two or three candles, and a doll. Place the pastry with the candles on the table. In the first step each child has a birthday 'scene' like this for himself and pretends to help the doll to blow out the candles, cut the cake, feed the doll and eat some himself. The second step would have both kids in the same scene taking turns. One blows the candle, the other cuts the cake and so on.
• Help the child move forward with the pretend play. For example, if he has learnt to give a bath to a doll, play out the next step, use a towel to wipe it, put on its clothes, comb its hair, apply perfume and so on.
  
  Given here are just a few ideas. Parents and caregivers who spend the most time with their child are, and can be very creative. So we can bring variations in these games. We remember to use very simple symbols of happiness and praise along with a game. We can teach the child to enjoy social praise. When the child sits to play with toys and does something interesting then we can say 'good', 'shabaash', clap our hands, give a huge smile, hugs, kisses and other encouragement. As the child progresses, and perhaps as her circle widens, gradually the games, toys and play activities have to be modified and expanded to suit her needs at that stage. It is fascinating to watch children play. And when a child with Autism learns to play in a meaningful manner, it is not easy to fathom the ocean of joy that parents experience

The year 2001 closed with the resounding success of the first India Autism Week, a marvellous joint effort by organisations nationwide. Action For Autism initiated the Week to raise awareness and create solidarity amongst autism specific organisations.

The Forum For Autism Awareness in Mumbai arranged lectures and workshops, picnics, painting events, and disseminated information to the press and the public. India Autism Forum, Bangalore arranged a press meet, screenings and workshops by the KPAMRC. Asha, Movement For Autism, Shristi, the Institute for Speech and Hearing, and others.

WE CAN in Chennai arranged press meets, screening camps and lectures. In Delhi the Week began with a conference on medical issues with international speakers and attendees, a Walk for Autism, and a workshop on biomedical issues. But the high point of the week was an art show Views from Planet Autism at the Habiart Gallery, India Habitat Centre which showcased the talents of six artists from different parts of the country. The artists were the stars of the show, and the Indian Express carried an interview with artist Rijay Jeyaseelan of Chennai.

Heartwarmingly of the 64 works on display 32 found buyers. The proceeds went directly to the artists and proved to be a tremendous boost for the aspiring professionals. Others handled colour, line, depth and volume with a largely untutored confidence, which suggested a communicative originality for which conventional modes of expression are inadequate. Thank you AMWAY Opportunity Foundation for your support. We look forward to India Autism Week in 2002 with eager anticipation.

Candida-Caused Autism?

Bernard Rimland, Ph.D.
Autism Research Institute, 4182 Adams Avenue, San Diego, CA 92116

Candida albicans is a yeast-like fungus which inhabits almost all humans. It lives on the moist dark mucous membranes which line the mouth, vagina and intestinal tract. Ordinarily it exists only in small colonies, prevented from growing too rapidly by the human host's immune system, and by competition from other microorganisms in and on the body's mucous membranes. When something happens to upset this delicate natural balance, candida can grow rapidly and aggressively, causing many unpleasant symptoms to the host. Some of the symptoms are widely known and acknowledged. Vaginal yeast infections, primarily caused by candida, present the most common case in point. Thrush, the white yeast infection of the mouth and tongue which is common in infants,
is another well-known example of candida overgrowth.

In recent years a minority of physicians have begun to try to persuade their colleagues, and the public, that candida may present consequences far more devastating to human well-being than vaginitis and thrush. They cite Japanese studies showing that candida is able to produce toxins which cause severe long-term disruption of the immune system and may also attack the brain. In extreme cases, they claim, severe disorders, totally resistant to conventional treatment, can occur as a result of candidiasis. These include depression, schizophrenia and, in some cases, autism.

It is much too early to reach a firm conclusion, but, based on the weight of the information gathered to date, it seems to me highly probable that a small, but significant, proportion of children diagnosed as autistic are in fact victims of a severe candida infection. I further believe that if the candida infection were successfully treated in these few cases - much easier said than done - the symptoms of autism would show dramatic improvement.

In a typical case of this kind, the child appears to be a normal, reasonably healthy infant for the first 18 to 24 months. Speech has started, and the child displays the usual level of interest in his family and his surroundings. A series of ear infections occur which are routinely treated by antibiotics. Soon thereafter, ominous changes begin to occur. Speech development stops, then regresses, often to the point of muteness. Within a few weeks or months the child becomes unresponsive and loses interest in his parents and his surroundings. The concerned parents take the child to various specialists, and finally come up with a diagnosis of "late onset autism." The story is familiar. We all know of such cases.

In 1981, this happened to Duffy Mayo, the then three-and-a-half-year-old son of Gianna and Gus Mayo of San Francisco. Duffy had been a bright and active youngster, learning to speaking both English and Italian before regression set in. After the diagnosis of autism had been applied by two specialists, the Mayos were lucky enough to take Duffy to allergist Alan Levin in their search for help. Levin found that Duffy's immune system was severely impaired. Of special interest was the fact that Duffy had been given a number of treatments with antibiotics, which were intended to control his ear infections. Levin knew that such antibiotics often kill the micro-organisms which compete with candida in the human body and thus allow candida to grow to overwhelming proportions.

Aware of the mounting evidence that candida might be less benign than commonly believed, Levin tried Nystatin, an anti-fungal drug which is toxic to candida but not to humans. Duffy at first got worse (a common reaction, caused by the toxins released by the dying candida cells). Then he began to improve. Since Duffy was sensitive to molds, the Mayos moved inland to a dryer climate. Since candida thrives on certain foods (especially sugars and refined carbohydrates) Duffy's diet required extensive modification. Today Duffy is an active, greatly improved 10½-year-old child with few remaining signs of autism. His immune system is still impaired, however, and he still requires treatment.

Most physicians are skeptical.

When the Los Angeles Times published a long, syndicated article about Duffy in 1983, the Mayos, and the Institute for Child Behavior Research, which was mentioned in the article, began receiving letters and phone calls from parents of autistic children throughout the country. It seems that there are many autistic children whose problems started soon after long-term antibiotic therapy, or whose mothers had chronic yeast infections which they had passed along to the infants.

How many of these might in fact be caused by candidiasis? No one knows.

William G. Crook, the well-known pediatric allergist of Knoxville, Tennessee, has mentioned several similar cases in his book 'The Yeast Connection' and in his lectures. Cecil Bradley (one of Duffy Mayo's physicians) recently told me that he has seen eight "autistic" children who respond favorably to anti-candida drugs and diet treatment.

ICBR has been gathering information on the possible link between autism and candida since 1966, when our first research assistant, Dale Meyer, noticed that thrush seemed to be mentioned unusually often in the letters and questionnaires sent to us by parents. I am fairly well convinced that there is a connection and that perhaps 5% to 10% of autistic children - those given many courses of antibiotics, or born with thrush or afflicted with thrush soon after birth - will improve when properly treated for candida. However, there is no consensus among physicians on the candida/autism linkage. Judging from contacts with several hundred parents over the past few years, only about one physician in 20 or 30 will give serious consideration to the possibility that treating candida may alleviate the symptoms of autism. Most physicians regard concern with candida as just another fad, soon to be forgotten. I wish they were right, but I don't think they are.

Even if the parent is lucky enough to find a knowledgeable physician, the battle is a long way from won. There are 30 or 40 strains of candida, and some are very resistant to treatment. Nystatin, quite possibly the safe prescription drug on the market, will work on the weakest candida strains. Ketoconosal (Nizerol) is a stronger drug, but much more likely to have adverse side effects. Diet is said to be at least as important as drugs in treating candida.

There are also non-prescription substances said to have anti-candida effects, such as acidophilus, caprylic acid, and other readily available substances, some of which have been used to treat candida for hundreds of years. All of these approaches have been tried, with varying degrees of success.

Although we have learned a good deal about the possible link between autism and candida in the past few years, there is a great deal more that we need to know.

Integration In School
(Name withheld on request)

It is now one year since I first wrote the article on 'How to Implement a GFCF diet at home'. The diet is working well with my son. He got admission into a mainstream school through normal admission procedures. I did not mention about him being Autistic as I had been advised. In the beginning the schoolteachers did not know how to handle him as he would only repeat what they said and did not give any response. But on the other hand he could read books and handle the computer better than most adults. He has an incredible memory to retain what was taught in class. So they knew that he was an intelligent child.

But it was difficult to give him individual attention in class. With the school councellors help we listed out the issues that had to be dealt with. Like indicating toilet, attendance, completing his work, colouring, writing, disruptive behavior etc.

I read up about social stories and how to use them. With his level of language it was difficult to even think about it. But still I started, made drawings and wrote the stories in very simple language, using Hindi and English all mixed up in the way that we speak. When he came back from school we read them together and he really started enjoying the stories with him being one character in it. He read them many times and soon memorised them. Then we enacted them with toys and also enacted the class room situation. I had to make three versions before he got the message. But very soon he started getting them in one go. Now I only have to tell him. I do not have to use social stories any more.

These children are so simple and good natured, my son always wanted to please the teachers but did not know how. With the stories he came to know how he could please them and what would not please them.

As we had been teaching him the ABA way he had a very robot like behavior. Always eager to learn new things and go on repeating them. This behavior was found very strange by the teachers as he was unable to give a natural response. So at home I stopped teaching him all the time, instead played with him in a very normal way talking to him all the time. Laughing and getting his normal response in that process.
It is important to follow his lead and play whatever he is interested in and have fun in it. Jumping, falling down, rough play all is good fun for him. He talks to his stuffed toys, I wonder if a pet would be good for him. Playing football or flying a kite is good fun. I have noticed that when I am energetic and keep him amused he gives a very good response.

He even offers help. Holds my hand as if helping me when I cook, rolls chapati of different shapes, jokes 'Is this play dough?'. Talking all the time.

ABA was good in the beginning when he had no language at all. It was the best way to teach him the basics by using their good memory. But gradually they should come to the spontaneous response like all other kids.

Though he has improved a lot but still there are differences that cannot go unnoticed. There are finer points that I keep looking for that need improvement. For example I taught him to look at other children in class and also join them in the naughty things they do, like fighting, running around, climbing on chairs tables when the teacher is out.

But soon I got the teachers comment that he has a very disruptive behavior. So I had to teach him that when the teacher comes all are supposed to sit quietly as she would get angry. Again by using social stories.It worked. In this process he has started conforming with his class mates.

He would not do his work without the teachers instructing him individually. So I made up a story saying that all the other children did the work and he did not. Teacher does not like it and so he must finish his work and give it to the teacher. I requested the teacher to praise him and it worked. He has started doing the work and the teachers are also pleased. It is reinforcing for all of us.

If the teachers are cooperative integration is not difficult. He still cannot tell me what goes on in school. So I create the scene and sometimes he adds to it.

Social stories have helped my son in many ways:
His language has improved
His comprehension is much better
His reading skills have progressed and he can describe pictures in a drawn sketch
He understands options and their consequences
Has learnt to put situations in words and make his own stories now
He can be taught anything
He is taking other people's perspective
He has developed an understanding of: WHY
He now gets closer to typical children

I hope other parents are able to use similar methods in integrating their children in school. I have always been optimistic and perhaps that is the reason why we have come this far. Something that looked impossible seems possible now only by hard work and aiming high. With tons of patience and never giving up.

"Give Me a Hug" - Language and Autism: A Case Study
Rajesh Kumar
Indian Institute of Technology, Delhi

We would not need to communicate with language if our mental processes were transparent to others. Nor would we have the advantage of being able to lie. Even if our mind were transparent to others, we might still need language for efficient thinking. Minds are opaque in nature. We can introspect only partially. Our subconscious processes are not available to us except indirectly. The opacity of mind makes it a difficult but fascinating area of study. The best way to approach the study of mind is through language. Because of mental opacity we need to have a Theory of Mind to understand others' minds - this may be defined as the ability to impute the mental states that one has oneself to others. Theory of mind is well within the capacity of a 'normal' child by four years of age. Children with autism have problems in acquiring a theory of mind.

According to Daniel Dennet (1996), mind with language is so different from mind without language that calling both 'minds' is a mistake. Humans are social beings, and language is inseparable from social interaction - of which one manifestation is conversation. Conversation is an interaction where information is exchanged between speaker and hearer, and vice versa, often resulting in mutual satisfaction. It relies on mutual understanding. Conversation with individuals affected by Autism is characterized by problems in this mutual understanding, with verbal communication taking unexpected turns.

Present study
The present study is an analysis of the language and communication problems of an individual with autism. The subject 'A' is a sixteen-year-old boy with a diagnosis of autism, according to the American Psychiatric Association's DSM-IV manual. He is a multilingual child with Bengali as his mother tongue, as well as English and Hindi. The subject is extremely verbal and can communicate in all these languages. The subject comes from a middle class family in Delhi. His father is a professor in a University and mother is a housewife. A attends a special school in Delhi. A close look at the language and communication of A indicates a lot of problems characteristic of the disorder autism.

His mental schema seems to consist mainly of certain likes and dislikes that are repeated on various occasions in his conversation. The present study is based on the researcher's visits to the Special Education Centre for a period of about one and a half years. During these visits, there was constant interaction with A - and based on that a diary was also maintained which contains almost forty episodes of conversations with him.

Cultural references in the language
Certain specific images or sign systems like the God Hanuman, some temples, gurujis, religions, Punjabi culture etc. seem to have been recorded firmly in A's mind. These elements are repeated in proper and also in inappropriate situations in the conversation with him. Certain excerpts from the conversation serve to highlight this:

Teacher: What is religion?
A. I don't like the word 'religion'.
Teacher: What are the different religions?
A. Christian and Bhumivaka religion. I am not scared of religion now; I want to talk about religion. At temple why do they put "chudha"?
Teacher: I don't know what is "chudha"?
A. It is like a film.

The teacher shows a picture and asks...
Teacher: Who do you think the taller girl in the picture is?
A. Why I like the Hanumanji? I like Hanuman...Hanumanji (repeats many times) Gabanji Gurudwara.
Teacher: What is the name of the school?
A. Arjun.

Repetitive utterances
Repetition is one of the major characteristics of the language of autistic children. It seems that there is a personal attachment or love towards a particular phrase or word. A often repeats set phrases in conversation.

Teacher: Go for the assembly.
A. I don't want to go for the assembly. Why I don't want to go for the assembly? It is my choice. Can I laugh now?
Teacher: Is climate a permanent thing?
A. Is it reversible? It is irreversible. Climate is irreversible (repeats) Can I laugh now? You can laugh now (repeats).

Lack of novelty or creativity in language
The subject in this study was given an assignment:
Question: How did you spend your holidays?
A. I spent my holidays by listening to music. I spent my holidays by getting presents. I spent my holidays by going for a walk. I spent my holidays by going to B-10. I spent my holidays by helping my father.

Code switching and nonsense utterances
It has already been mentioned that the subject in the present study is a multilingual child. Some of the instances of conversation with A show that there is a shift from English to Bengali or Hindi while the grounds of the conversation are in English. This kind of shifting is generally called code switching. Many times the switching results in nonsense utterances.
Teacher: A boy goes to a shop and buys a chocolate costing Rs.4. He gives Rs.10 to the shopkeeper. How much money will he get back?
A. He will get back panch allah...He will get back heena paana maani. He will get back how many change?... Kaali Baari Rs.4

It is my choice
Most of the time, the rationality for a particular behaviour of A is expressed through his argument of choice. Especially likes and dislikes are often expressed through his choice.
A. I am not troubling anyone now. Why? Because I am big. I don't like boys now. I like girls. Why? Because it is my choice.

Discussion
Most of the research findings in the area of language and communication in autism indicate an intact phonological and syntactic system in individuals with autism. Problems in communication arise mainly in the third dimension of language, called pragmatics or language usage.

One of the important aspects of the language of A is his repetition of certain words and phrases. Code switching and nonsense utterances are present on many occasions. Here the matrix language is always English and the embedded language can be Hindi, Bengali or a nonsense utterance. Certain cultural and religious signifiers seem to be permanently fixed in the subject's mind. It seems that his mental schema from a structuralist perspective can be reduced to certain signs or elements such as gods like Hanuman, and religions.

In the communication of individuals with autism, intention, which is the core of any utterance, is often lacking. Even though many of A's utterances in this study demand the hearer's attention- like "Can I laugh now?" and "Please give me a hug" - other utterances are like monologues. The basic factor essential for communication is a 'theory of mind', which is not fully developed in autistic children. Its absence or impairment affects the inter-subjective understanding essential in successful communication. As a result, communication in autism can seem self-centered.

Autism and Young People
Richard Attfield

Autism is a devastating social and communication disorder that can wreck young lives if appropriate intervention is not implemented from an early age. Occurring in varying degrees of severity, autism affects a person's ability to connect with the outside world.

Not all people with autism need life-long support, but the first step towards progress is recognition of the condition. Against all the odds, a number of young people with autism in the UK have, with the aid of communicators, succeeded in going on to study at both college and university level.

Richard Attfield is one such person. Now studying for his A levels at Basildon College, Richard is autistic and has cerebral palsy. Last year, he was nominated as the overall winner in a writing contest.

His winning essay (edited, below) is a powerful account of what it was like to have autism in the 1990s. It was forwarded to Action For Autism online.

I joined Basildon College last September straight from a special education unit for autistic youngsters. I guess readers of Schoolmaster may have heard of cerebral palsy but many of you will never have heard the word autism, although there are some 26,000 autistic children in Britain alone.

Many autistic children have no speech. I am fortunate that I do have some speech but my main means of communication is typing. I lived for the first 15 years of my life unable to communicate effectively until I was given a Canon Communicator and learnt to type with one finger.

This once virtually non-communicating person now loves talking through his fingers!

The first time I realized I had a major speech difficulty was when I joined play school at the age of three and realized that the other children would join in and chat to one another. I guess I did try to talk, but I would get very frightened and hide myself, crying from not being able communicate freely. I remember one day a little girl spoke to me and called my name. I couldn't even respond to her attempt to hold my hand.

The truth is, given my disability, I had no choice. Autism takes control of a child; it holds you prisoner. No one, unless you've experienced it, can understand the frustration of not being able to join in a conversation. I guess people thought I was retarded and had no thoughts or feelings that mattered.

When I started school I had to do the same work over and over again, because I had no way to communicate to the staff that I understood what they were teaching me. 'One plus one equals two' gets pretty boring after a while - so one day I thought 'I am not doing this anymore'. And that was that. I kept trying to join in, by sitting with my face turned in the opposite direction, but no one understood my body language enough to get the message.

I grinned form ear to ear when it was decided that I was too thick to understand such complicated mathematical additions. Hello life, I thought!

But I was a lonely boy, lost in a world that gave up on human beings like me because they could not respond to talk.

But today, several years later, I am studying A level English Literature and History of Art, and enjoying every minute of it. In my short life I have learned that that old and young alike we all make mistakes. But not all of us spend 15 years paying.

Let's hope the next generation of children with autism have a better quality of life than I had.

Helpline

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. 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. 1. My son M is chewing the neckline of his shirt I am ignoring it. Is there anything else I should do?
2. May I have the recipe for Soya Milk.

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.

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.

Letters to the Editor

We are still at a loss for words to appreciate the kind of commitment we saw at AFA (Action For Autism) . It was wonderful meeting each one of your team members and we came back to Mumbai happy that we had met a group of very nice human beings who are all very committed. Please don't hesitate to let us know if there is anything that we can do towards AFA's goal. Looking forward to keeping in touch with all of you,

Advaith , Shanta and Venkat
MUMBAI

Integration in school is one important area which needs a lot of work. I did so for my son with the teacher and counsellors help. High functioning children also need to be helped in their functioning in school. Life is in fact more difficult for them as they are intelligent and teachers find it strange that they do not give a response that is expected.

Expectations from such children is very high. The teachers think that parents are pushy and have taught their child to read at such an early age but have not taught them to talk. They don't understand that our children can learn to read on their own but not be able to learn the language like other children do. There are complaints all the time. We are working so hard on it. I don't know how long will our struggle go and if he will be able to cope up with the demands of school. The only answer is that I keep working and hope for the best.

M
NEW DELHI

I recently learnt that Rehabilitation Council of India (RCI) has decided to train teachers to work with children with autism. This was heartening news. It was a great relief to learn this and in the light of this I want to share my experiences with you.

My son Angad who is presently 7 years old was diagnosed to have moderately severe autism at the age of 3 years. He initially received speech therapy which proved no good. He started attending a nursery school which had a special section. This section catered to special children who were physically and mentally challenged and with special needs and also autism. They had trained special educators but they had no special training in autism. Angad went to two such schools for a total period of two years. I felt the training these schools were giving lacked direction. They tried their best but due to lack of knowledge were not doing much headway with Angad.

It is two years since Angad is attending the special school which works only with children with autism and has teachers with formal specialised training in autism. This has improved Angad a great deal. His restlessness has decreased. His behaviours are improving in a positive direction and both of us are learning to cope up better. I have noticed improvement in Angad's learning skills and concepts. I wish RCI all their best in their endeavour to train teachers to work with these children and I think this will do a lot of good to these children of the lesser God.

Dr G Kampani
NEW DELHI

I feel so happy and now I can achieve in life. Convey my love to other folks.

Regards & BIG THANKS
Love, Rijay

It was a dream come true for all of us - especially for Rijay on taking part in the Art Exhibition (Group Show 'Views from Planet Autism' during Autism Week). Rijay is very happy and cheerful and always talks about you. Many many thanks for excellent support and enthusiastic efforts in making Rijay's contribution a great success! May God bless you and your able team in all your activities in the NEW YEAR! Have a great New Year!

Jeyaseelan Pillai
CHENNAI

Announcements

Teacher Training Course 2002 - 2003
Train in one of the most challenging and exciting areas of Special Education. Admissions now open for the next training session. The first semester of the one-year training commences in mid-June 2002. Limited seats. Energetic and Enthusiastic Graduates are invited to apply. Child Development, Psychology, and BEds preferred, though not essential.

Placement assured on successful completion of training.

Outstanding candidates will be absorbed by Action for Autism. Applications with complete bio-data, 100 words on why you want to train, and a Demand Draft for
Rs 100/-, to be sent to Annie John, Action For Autism T370F Chiragh Dilli Gaon, New Delhi 110017.

Please mark envelopes 'Teacher Training Course'
NOTE: Last date for receiving applications 31 May 2002

Made at AFA
The Adult Work Skills Training Unit at Action for Autism has for sale various articles made by the trainees.
Placed below are a list of the items. Your patronage will encourage their efforts.

1. Handmade Cards
2. Brown paper envelopes:
Sets of Ten. Size: 24cm x 11cm
3. Wrapping paper
4. Paper bags for gifts
5. Cross-stitch coin purses
6. Decorated letter paper and envelopes: Sets of six
7. Handwoven jute bags

Call the AFA Centre for placing orders. Tel:6416469, 6416470

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