Page One | Alternative Therapies: Social Stories | Rett Syndrome | Training Course in France | Seminars and Workshops | Don't Mourn for Us | Kannu's Three Years At Home | On Changing Unwanted Behaviours | Note From A Father | Update on OPEN DOOR | Would You Like To Help AFA Continue to Grow? | Helpline | Letters to the Editor

N E T W O R K

Page One

As the last issue of Autism Network for the millennium goes to press, we learn that the National Trust Bill for Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities is to be tabled in Parliament. With the passage of the bill Action For Autism will have succeeded in effecting the inclusion of autism as a disability in one first national legislation. Perhaps the dawn of the new century will see quicker progress in convincing the powers that be, of the specific and unique needs, in education and otherwise, of individuals with an Autism Spectrum Disorder!

The festive season during Dussehra and Diwali is one of AFA's busiest, with workshops, events, and visits by outstation families. Our Training Workshops in Delhi this year, saw a large number of doctors participating as well as parents from Pakistan and the Sultanate of Oman. This was followed in November with an invite from the Bishop Cotton School to give a workshop in Shimla. Kamini Mustafi the Principal of the Junior School who started their Learning Centre a few years ago, has created a happy fun-filled place that was a pleasure to visit. The Mustafi's are a dedicated couple and their lead has encouraged other schools there to educate themselves about autism. The workshop was attended by professionals from various other schools in Shimla, teachers from Bishop Cotton, as well as parents. The last day was given over to individual consultation with families. The three exciting and very satisfying days were marked by the gracious hospitality of the Mustafi's.

As always, an important aspect of all our work is helping carers see the world from the person with autism's point of view. AFA speaks first for the person with autism and then for their families. This is, acceptably, oftentimes hard for parents: particularly those struggling with complex life situations. Parenting a child with any disability and the accompanying kinds of stress is always harder than parenting a typical child. And parenting a child with autism can often be extremely so. This is to quote a parent, "probably because first of all you assume for much longer that you have a typical child, so you do not have the same transition and supports. People in your life remain in denial longer and contribute to the sorrow and confusion. The diagnosis of most other disorders is correlated with physical and medical evidence and people tend to rally around the parent sooner. A diagnosis of Autism tends to be harder for families because other people are not generous, nor do they make as many exceptions for behaviour." In this issue we carry an appeal by someone with Asperger's Syndrome. Don't Mourn for Us by Jim Sinclair gives us the point of view of someone from within the Spectrum. We hope it gives our Neurologically Typical readers a clearer insight into the world of Autism Spectrum Disorders.

Also in this issue is an introduction to the use of 'Social Stories'. Though Social Stories do not strictly come under the realm of Alternative Therapies, they do however provide another way of helping individuals with autism learn and apply social rules.

AFA's strength is the parents themselves: Parents who are determined to make a difference; who are determined to see our society become more accepting of our unique children. The Parents Group grows in strength as a support group and its meetings are now a looked forward to event. Meetings have become more structured too. The last focussed on home programmes, with various parents sharing their experiences on how to set up and run effective home programmes. In this issue a parent in Mumbai who has been home-schooling her child for several years now shares with us the joys and challenges of helping her child grow and learn outside a school environment.

As we step into the year 2000, Action For Autism does so with the conviction that though we have many more miles to travel we do so with dignity and respect and with the support of the larger community. However, AFA does not ask for help for our 'poor children' or our 'tragic parents' because we do not view them as either poor or tragic. We believe that they are just regular people living with a difficult situation, trying to do the best given the circumstances of their life, and who have the same right to respect and dignity as everyone else. Not Pity. AFA will go that extra mile; climb that extra rung if it will enhance the quality of our work. So that all of us in the autism community can take pride in setting a standard for autism services in South Asia.

For the last time this millennium Action For Autism and Autism Network wishes all our readers a joyous Christmas, and much peace and happiness for a splendid New Year.

Alternative Therapies V: Social Stories
Ann Varavukala

Across the spectrum, children with autism high or low functioning, verbal or non-verbal, have problems in acquiring every day social skills. The ability to decide whether a certain behaviour is appropriate, by naturally imitating the example of others around, to be able to gauge if it is being met with approval or not, may seem so trivial, until we see a child with autism, who does not have this skill, struggling to make sense and fit into a world whose rules he or she simply cannot understand.

All of us instinctively and automatically judge our actions not only by our own motivation for it, but also by others reactions to it. For this we use our ability to put ourselves in another person's shoes and view our actions through their eyes. But for those with autism, this is very hard to do. It can be seen in as simple an incident as 'someone stepping on another's toes', and acknowledging that it might have hurt the other person and therefore immediately apologizing. For the child with autism however this may not be obvious. He or she may therefore step on anyone or anything while passing and not see it as rude or uncaring simply because they are not able to put themselves in the other person's place and imagine what being stepped on feels like.

Like most things in life, and particularly with autism, identifying and understanding the difficulty is half the battle won. Social skills can be taught, and children with autism can learn appropriate behaviour, and over time even the ability to empathize. One powerful method often discussed in these pages, is that of ignoring or redirecting inappropriate behaviour and praising behaviour that you want to encourage. Another wonderful way to do this is by using what are called 'Social Stories'.

Social stories explain in simple language the events that take place in any social interaction. In a social story the characters demonstrate a specific appropriate behaviour in a specific situation. Generally the behaviour is one that the listener (or reader) needs to learn or improve. Based on identified needs, a good social story sets the stage for the targetted appropriate behaviour.

Social stories are comprised of four types of sentences -descriptive, perspective, directive, and control sentences:

o Descriptive sentences objectively define where a situation occurs, who is involved, what they are doing and why.
o Perspective sentences describe the reactions and feelings of others in a given situation.
o Directive sentences are individualized statements of desired responses. They often follow descriptive sentences telling a student what is expected as a response to a given cue or situation. Directive sentences often begin with: 'I can try to...' or 'I will try...'or 'I will work on...' etc.
o Control sentences are written by or after a discussion with the student with autism.

These sentences identify strategies the student will use to recall the information in a social story. What follows is an example of each type of sentence in a social story about dealing with a sudden change:
Sometimes a person says, "I changed my mind." (Descriptive)
This means that they had one idea, but now they have a new idea. (Perspective)
I will work on staying calm when someone changes his mind. (Directive)
When someone says,"I changed my mind, " I can think
of someone writing something down, scratching it out, and writing something new. (Control)

The most important of these four types of sentences are the descriptive and perspective sentences. Ideally a ratio of at least three to five descriptive and/or perspective sentences should be there for every directive and/ or control sentence. This should be maintained regardless of the length of the social story, the complexity of the language or the issue addressed. When writing
a directive sentence, avoid using statements that are inflexible or that require absolute compliance, for a student to feel successful as a learner. For example, statements that begin with 'I must....', 'I will....' or
'I should....' leave little room for flexibility. These may result in a student feeling pressured to comply with specific responses right from the start. Similarly rather than use words like 'not', 'never', 'always' use a positive approach.

Social stories work well, because they simplify and isolate the target behaviour within its social context. By including simple line diagrams or photographs, a strong visual element can be introduced that helps the student focus and remember the story. A social story can be repeated again and again, till the child starts to use the targeted behaviour appropriately. Some children like their social stories so much that they actually like to carry them around. A simple ring folder with partitions is a possible way they could do so, so that they could turn to the specific story that is relevant in a given situation and refer to it to remember what is appropriate. It is a way of giving the child control over its own behaviour. Social stories could be used to teach both simple and complex social skills as long as they are well written and planned. The following are some simple guidelines to follow when writing a social story:

o When writing a social story, write well within a student's comprehension level. Use vocabulary and print size appropriate to the student's ability. It is not necessary that the student be able to read - but the language used must be clear and simple enough for the student to be able to understand. Keep sentences simple and short.
o At any given time use just one or two stories with a child.
o Preferably write in the first person and in the present tense. Use the child's name 'Neena', or a silly personal name like 'Ninnu'. This helps the child internalize and learn quickly.
o Have the characters actually do what needs to be learned by the student. Social stories are really meant for the student to understand how to respond, not how other people respond in situations or as a medium to pass a judgement on the student's usual inappropriate behaviour.
o Social stories may be written in the future tense, to describe an upcoming situation to make it less threatening. Relating aspects of the anticipated event to a more familiar event, setting, or activity may be helpful.
o When writing a social story include as many real-life situations that the child will be in as possible keeping in mind not to introduce too many new situations in one story. Use names of family members, friends, and activities he engages in routinely. Buying vegetables at the sabzi bazaar, buying milk at the Mother Dairy store, visiting the weekly market, taking a bus to school, walking to the park etc.
o Try to start a story with a perspective or descriptive sentence, not a directive one.
o Be very specific on the skill/behaviour being taught. Try and stick to one topic per social story especially when the child is new to this exercise.
o Use one directive per two to five descriptive/perspective statements.
o State directive sentences positively, describing desired responses instead of describing problem behaviours. Provide options with directives. Avoid using 'not'.
o Avoid terms like 'always', instead use terms like 'usually' or 'sometimes' when writing a social story.
o Use terms like 'I want to', 'I can try to'.
o Involve the child when writing the story.
o You can have the student illustrate the story. When using pictures keep one or two lines of writing per page and leave the rest for illustrations. However, use illustrations provided these would not distract the student, and clearly demonstrate the focus of the specific sentence on the corresponding page. Photographs or simple line drawings can be used. If a video camera is available, shooting a simple clip showing a sequence of appropriate behaviour, with a voice over for each scene could also be another possible way to present a social story. You could use a format like a comic strip, with thought bubbles to show what the thoughts of another person or the student could be in a specific situation. The possibilities are endless, and its strength lies in the fact that the idea is so adaptable to each child's specific way of absorbing information.

When introducing a story for the first time, begin with a quiet place with minimal distractions. It maybe helpful to sit at the student's side, slightly back from where the student is sitting. The focus should be on the story, so that the student is in direct contact with the information in the story. This is a time for sharing information and not table-top teaching

Here are a few examples of social stories:

Getting A Hair Cut
I get my hair cut when it is very long.
When I go to get my hair cut, I go to a barber shop. They have barbers at the barber shop who cut my hair.
I make an appointment to visit a barber.
I sit in a chair made for people who want their hair cut.
The barber may wash my hair. When they wash it,
I wear a plastic cape that protects my clothes from
getting wet.
The barber will cut my hair so I look nice.
The barber has to touch my hair when I get my hair cut.
It feels okay to have my hair cut.
After they are finished cutting my hair, I look a lot better. Sometimes I may get a toffee or a pepsi.

On The Playground
Sometimes when I go to the playground
there are kids there who want to play with me, and sometimes there aren't. That is okay.
Maybe next time, there will be kids
to play with.
It is better to play alone or play with mom or dad, then to try to play with kids who don't want to play with me.

Going To Bed
My bed is for sleeping.
If I sleep in my bed, I will be rested for the following day.
If I stay in bed, I will probably be in a good mood the next day.
I will try to stay in bed.
My bed is a good place to be in when I am tired and need some rest.
I will try and stay in my bed until the morning so I can get enough rest.

Taking A Bus
Sometimes we ride the bus to go to school, to visit Naani, or many other places.
I wait at the bus stop for the bus.
I find a seat on the bus. If there is no place to sit, I may stand.
When I ride on a bus, I sit or stand quietly. The people around the bus driver and me will be happy because it is quiet.
Sometimes I sit next to people on the bus. Sitting next to people on the bus can be fun.
Riding the bus can be fun for everyone if we follow the rules and know what to do.

References:
o The Original Social Story Book, Ed Carol Gray, Future Horizons 1993
o Higher Functioning Adolescents and Young Adults with Autism, Fullerton, Stratton, Coyne, Gray, Pro-Ed, 1996

Rett Syndrome - A Complex Conundrum
Roney Mammen

Rett syndrome is a complex neurological disorder of varying severity, which appears in infancy following a period of apparently normal development. Since only girls have been found to be affected with this disorder, studies are being conducted on the possible role of the X chromosome in Rett Syndrome, first described by Dr Andreas Rett, a doctor of Vienna, in 1965. The awareness of Rett Syndrome is abysmally low in many parts of the world including India.

The absence of a biological marker makes it difficult for a conclusive diagnosis of this disorder. Diagnosis is presently dependent on careful observation of the child's early growth and development, and on an ongoing assessment of medical history and physical and neurological status. The criteria adopted for identifying a Rett Syndrome patient would be as follows:

o Apparently normal pregnancy and delivery with development of voluntary movements between
6-18 months.
o Normal head circumference at birth followed by a slowing of head growth between 5-48 months.
o Unexplained loss of acquired purposeful hand skills between the ages of 6-30 months temporarily associated with communication malfunction and social withdrawal.
o Development of severely impaired speech and understanding of language together with the presence of severely delayed development of voluntary motor skills.
o A fixed pattern of hand movements such as wringing, squeezing, clapping, tapping, washing, rubbing and mouthing, which can become almost constant while awake. Patterns appear after loss of purposeful hand skills.
o Appearance between 1-4 years if a shuffling or jerky gait with fixing or locking of joints into one position so reducing the ability to move from one position to anther. Even if some children are able to walk, they tend to fall down at the slightest obstruction.
o Shakiness of the torso and also of the limbs.
o Diagnosis usually tentative until 2-5 years of age.

Supportive criteria
The following symptoms may also be seen among Rett patients.

o Breathing irregularities, which can include hyperventilation and/ or breath holding and/ or air swallowing and/ or forced expulsion of air or saliva.
o EEG abnormalities which include slowing or normal electric patterns, epiletiform discharges, with or without clinical seizures.
o Seizures (in up to 80% of patients starting at any age).
o Teeth grinding (Bruxism).
o Decreased body fat and muscle mass.
o Increased spasticity with age (muscles become increasingly rigid and joint deformities may occur).
o Decreased mobility with age.
o Growth retardation.
o Poor circulation in the lower limbs leading to cold, blotchy and bluish-red legs and feet.
o Small feet with smaller fourth toe.
o Constipation, sometimes leading to fecal impaction.
o Abnormal sleeps patterns and irritability.
o Decrease in autistic features with age.

Treatment
To date, there is no known treatment for the complete cure of Rett Syndrome. Anti - convulsants are prescribed for seizures. Regular physical therapy is necessary to achieve as much mobility as possible and to prevent stiffening of limbs and achieving or maintaining purposeful hand function and independence. Music therapy and water play is felt to be beneficial. It is also important to develop means of augmentative communication for the child.

The parents of RS children are living with a fervent hope that sooner or later, there may be a cure for this complex neurological disorder.

Professionals are encouraged to join for the purpose of learning more about how to provide counseling/therapy for AC clients.

Training Course in France
Shamika Bakshi

This summer vacation, when everyone else was having fun, I went to France for a period of on-the-job training.

I first went to Lille, a town in the north of the country, next to the Belgian border. There, I had to take care of two autistic children, one is 10 and other one is 14. The parents were applying a new Canadian method. In this method, during the one-to-one session, you have to make the child focus by ordering him or her to stop all obsessive behaviour such as clapping, jumping, shouting. If the child does anyone of these things during the session, he or she gets hit by the person who is working with him or her (it can be the father or the mother). I didn't enjoy working with this Canadian method because the child becomes violent after using this method. I stayed here only for two days.

Then, I went to a day-care centre next to Paris for two weeks. There I came to interact with 12 young persons with autism from 17 to 25 years old. Most of these young adults are very independent and very able, but only one, who was 17 years old, was verbal. Two of them were not toilet trained, so they had to wear diapers. Everyday, they do housework like laying the table for breakfast, washing the dishes, and also feeding the rabbit and the guinea pig. They also have outdoor activities like gardening, walks in the park, swimming pool. One of their favorite hobbies is baking cakes which they do every afternoon.

The main method used at this centre is TEACCH. They don't have any on-to-one sessions, but they have their own schedules to check and follow, and their independent work systems.

The people of this centre welcomed me very warmly, and I enjoyed these two weeks very much. I hope to be able to go back there next year.

Seminars and Workshops
Ann Varavakula and Rajni Dutt

Dr Joaquin Fuentes at Action For Autism

Awareness of Autism, its level of prevalence, its complexity, and the effective intervention programs that exist, is still low among pediatricians, psychiatrists and special educators in our country. In our work with parents and professionals we still come across a very large number of misdiagnosis, wrong information and over-pessimistic prognosis held out for the children with autism because of the lack of informed professionals and services. In addition we have been very concerned with the usage of strong drugs without adequate monitoring, to treat various behaviours that are far better handled with appropriate teaching methods.

It has been AFA's constant endeavour to interact with specialists from whom our own therapists can learn and update their knowledge base and skills on autism and its treatment. Dr Joaquin Fuentes is an internationally renowned psychiatrist and specialist in autism. More relevant for us is his experience with the development and running of Gautena Autism Service in San Sebastian - one of the few regions in the world where over a period of time a highly sensitised and inclusive social environment has been created for individuals with autism.

Dr Fuentes was invited to India to give workshops for doctors, teachers and parents. The workshops were spread over two days. The first day's topic "Autism: Time for evidence based practice" was targeted at medical professionals: paediatricians, psychologists and psychiatrists. The second day's theme was built around the concept Autism: Meeting the challenges and aimed at teachers, parents and other caregivers.

Attendees came from all over India: Bhopal, Mumbai, Guwahati, Bhubaneshwar, Jaipur, Chandigarh and Ahmedabad in addition to a strong contingent from Delhi. Topics covered included: the changing criteria for diagnosis and the factors influencing it; the actual process of making a diagnosis that will facilitate adequate treatment; epidemiological and biological data regarding autism; the possible harm of long term drug use in ASD; integration of the autistic individual into the family and the community; the main ingredients of a treatment plan with a life span perspective; intervention strategies; utility of appropriate service delivery and available resources for autism; possible harm/efficacy of long term drug use in treating autism.

Sessions were followed by Dr Fuentes answering questions addressed to him by the participants who brought their professional experience to bear in a freewheeling discussion which was both stimulating and informative. The response was indeed overwhelming. One-on-one discussions after the day's proceedings between Dr Fuentes, the other professionals, the teachers, and parents were also most enlightening.

October Workshops in Delhi

In October AFA held its annual training workshops. As in other years there was a workshop for parents and one for professionals, as well as a Childcare where parents could leave there children for the duration of the workshop and participate in the workshop without worrying about them.

This year in addition to the participants from every part of India we were pleased to welcome participants from Pakistan and Oman as well. Mrs Asha Das, Secretary in the Ministry of Social Justice and Empowerment inaugurated the Parent Workshop. Nazima Neher Ali, a parent from Pakistan, was invited to present Mrs Das with the workshop material as well as an AFA memento.

The demonstration classroom at the workshop venue was particularly effective this year, especially during the parent workshop. One of the children who has been going through changes in his home situation was somewhat disturbed, and as a result during a one-on-one session exhibited what may be called challenging behaviour: trying to push the desk over, pull the therapist's hair and so on. It was an excellent opportunity for all fifty-eight-parent participants to observe the comfort with which the therapist not merely dealt with the behaviour but actually enabled the child to complete all the activities that were set for him.

There was a considerable increase in the number of families availing of the day-care. There were twenty children with autism, all under age ten and two siblings: The carers, and volunteers had a marvellous time, as well as a great learning experience charged with twenty-two balls of energy!

As always it was a great learning experience for everyone: this opportunity to share and learn, with and from parents and professionals each with their unique and diverse experiences.

Don't Mourn for Us
Jim Sinclair

This article was published in Our Voice, the newsletter of Autism Network International, Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 'International Conference on Autism' in Toronto, and is addressed primarily to parents.

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective.

Autism is Not an Appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colours every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person-and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say:
"I wish my child did not have autism,"what they're really saying is, "I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is Not an Impenetrable Wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true. Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career - but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision - but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done - unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is Not Death
Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives - but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it - and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counselling and support groups. In those settings parents learn to come to terms with their loss - not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think Autism Societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it - and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labour. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do, away from the autistic child, and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy.
The adventure of a lifetime is ahead of you.

More From Jim Sinclair

Jim Sinclair is opening a new distribution list for discussions of counselling and therapy for people with High functioning Autism and Asperger syndrome. When he refers to AC, that's an acronym for Autistic and Cousins, meaning people with autism, Asperger syndrome and various other communication difficulties. 'J8' is his signature.
- Paul Trehin, Secretary General,
World Autism Organisation

Here is Jim Sinclair's new list description:
Given the many strong responses to this topic on the AC section when it came up recently, and given the number of phone calls I receive about ACs looking for qualified counselors and therapists, and given the need I see among well-meaning but inadequately-educated colleagues, I have decided to start a new list (on onelist) for discussion of issues in counseling and therapy for ACs. The description of the new list is:

To discuss issues in counseling or therapy for clients on the autism spectrum and "cousins." This is not a forum to 'provide' individual or group therapy, but a forum for ACs to discuss things that have been helpful/unhelpful in counseling they have received, and qualities they would like to find in a counseling or therapy situation. Professionals are encouraged to join for the purpose of learning more about how to provide counseling/therapy for AC clients.

Unlike ANI-L, subscribers to this onelist forum will not be screened. It will be a more "open" list for the express purpose of sharing information, so that both providers and consumers of counseling/therapy services can become more informed. People should join and post with this in mind, and should consider carefully how much personal information they wish to share in what is essentially a public forum.

You can join this community by going to this web page:
http://www.onelist.com/subscribe/AC-counseling
Or by sending an email to the following address:
AC-counseling-subscribe@onelist.com

Kannu's Three Years At Home
Swapna Thampi Nair

'Kannu', my wonderful 11-year-old son did not attend any schools for 3 long years, it was my decision not to send him to a school! Kannu is a 'SPECIAL CHILD' and his requirements for a school is unique; I would like to share the good reasons as to why I took such a unique decision. I had to answer the questioning of a variety of people from my milk man to my neighbour, from relatives to the so called professionals; to all these curious people, my answer was the same "it is my decision - my Autistic son's decision".

These three years are the best years in our lives, against all odds "we" achieved a lot. Kannu picked up all self-help skills, the beautiful concept of sharing, the delicate concept of privacy, some social skills and he stopped running aimlessly. He jogs with me now!

I had a tough time in finding a suitable school for Kannu in Bombay when my husband got his transfer from Delhi. My training as a professional from AFA and Kannu's school experience from 'Open Door' made me more concerned about the school set up for autistic children Maybe the inflexible attitude and out dated methods which some schools followed in dealing with autistic children put me off. As my Kannu comes in the middle of the Autistic spectrum he needs special schooling but I could not dump him in a special school where no one is updated. We found a suitable solution - a home based programme for Kannu and it worked! In the beginning there was no fixed timing because of Akshara (Kannu's baby sister), lack of a helper, and my husband's frequent tours, but I started with lots of enthusiasm and I played a lot with Kannu, sometimes alone with him and at other times together with his sister. Both my children started enjoying our play times, which incorporated a lot of physical activities including lying on the floor, raising legs and arms, rolling around, hugging each other and lots of singing and tickling. Then I introduced the concept of 'turn taking and waiting for turns' gradually. The next step was giving structure to play time, time to play with a song starting with the phrase "Kannu, Baby and Swapna are going to play" and ends with the phrase "play time over".

Kannu was a poor and picky eater who used to eat only rice, curd, milk and frooti and a few variety of namkeen. I wanted him to eat and explore other types of food. I made a comfortable sitting arrangement in the kitchen which Kannu found suitable for his favourite solitary thinking. I kept all edible things in see-through containers and fruits in open bowls. First two days he did not touch anything other than some salty things. To my surprise on the third day I found some banana peels on the table. Yes, Kannu ate two bananas and I celebrated that day! Then I introduced sweet limes, chickoo, apple along with bananas and Kannu tasted all and banana remained his favourite. Though Kannu started exploring new foods, his lunch and dinner had to be fed by me. I wanted him to eat his food by himself. For achieving that I started feeding him only very small quantities of his lunch as well as dinner and the rest of the food I left on his table and asked him to eat. Here also it worked! Kannu started eating his food. After food I directed him to the wash basin and later it became a routine for Kannu.

My consistency and enthusiasm and Kannu's wanting helped him to pick up certain major skills. My next goal was to teach Kannu to be independent, and other self-help skills such as brushing his teeth, bathing, wearing clothes etc. For achieving that I started giving a routine and structure to all his activities. When he gets up in the morning I started directing him to the toilet where near the wash basin I kept everything ready in a left to right order. I started his brushing in a 'hand on hand' manner but the moment Kannu showed attempts of resistance I stopped. It continued more than a month, one day suddenly Kannu removed my hand from his and started brushing by himself and I hugged and praised Kannu, and still cherish that moment.

While giving a bath to Kannu I broke the whole activity into simpler steps and here also the visual structure helped. In the beginning I asked Kannu to "pick up mug'' and directed him to collect water. Once he is started getting water from the bucket I ask him to "pour water'' on his body. Kannu's habit of mouthing and playing with the soap helped me to make him apply the soap on request. Kannu still prefers to apply the soap only to his choice areas! And I don't mind that. He was very scared of pouring water on his head. I wanted to help him to overcome that fear. To achieve that I asked Kannu to pour water on his head by himself and I gave a small towel to wipe his face when the water flows down. I place myself away from him so that he does not feel any pressure from me. He himself found this quite acceptable and started enjoying his hair bath. Kannu learned to wipe his head but does not like to wipe his body. No big deal!

Kannu's aimless running stopped me from taking him for walks because of little Akshara. I always needed my husband or somebody else with us so that he can be with the little one when I go after the great runner. I realised the importance of helping Kannu to get rid of this aimless wandering. One year passed without any success. When my daughter started walking I wanted to take them out together. I introduced the song "Kannu, Swapna, Baby going for a walk, going for a walk". There were a lot of people who intruded into our ''visual privacy''. By giving them nice warm looks I could tackle them. I pointed the big banyan tree to Kannu and told him we will go up to there and I made them walk from the left side of the road. As soon as I reached there I told them we are going back home and placing myself in the middle with the children on both sides I came home. I started taking them alone after that. But one day without giving me any cue Kannu ran but I cheered him loudly" Kannu run...run''. Suddenly he stopped and waited for us. The moment we joined him I told Kannu that we will run together. Three of us ran happily! After that incident whenever Kannu tried to run I asked him to run more and all the times he waited for me and we started running together.

The next step was giving a structure to the running activity. For that I found a safe and nice place in the Air force camp where we live. We started going to that place and started our regular jogging there. Kannu stopped aimless wandering! I had to make lot of adjustments and changes as Kannu does not like stopping in between and my chatting with people. I had to make my priorities very clear. I started saying a nice "Hi" and a very sweet "Bye" to all my acquaintances whom we meet on our way in the evenings.

Let me share a high note with all of you - "With our children, sick and well, we were firm and confident because we knew that our confidence was their security". A meaningful line from the classic 'Siege' by Clara Claiborne Park helped me to be confident, thus providing security to my severely autistic, non verbal son Kannu - and helped him to achieve all daily living skills. I learned a lot from a wonderful mother as well as a marvelous professional: Thanks to Merry (Merry Barua) who taught me the importance to acquire an unconditional relationship with my son as well as with my autistic students.

On Changing Unwanted Behaviours
Hema and Jairam Sampath

At our very first session at Action For Autism, we discussed our son's condition and ways that we could help him. We discussed, too, some of the behaviours that were causing us concern and that we wanted guidance on stopping. One of the suggestions we were given was to ignore any undesirable behaviour of the child, which he may be doing to seek attention.

We decided to try this out the same evening with a behaviour that we recognised as attention seeking. In the room where we were sitting there was an electrical point for the A/C along with a stabilizer. The previous evening our son had continually gone to the A/C point and tried fidgeting: touching and tugging. One of us would at once scream with alarm, and scold and pull him away from there! That evening after our session at AFA we came back to the room as usual. Our son, with a mischievous smile, went to the A/C point and tried to fidget. Since we had decided to completely ignore the behaviour, there was no reaction from us. We did keep a casual watch to ensure he came to no harm. The next thing our son did was to climb a nearby table and stand on the top and scream and laugh and thump his foot and so on. We ignored this too and kept ourselves busy talking and laughing with each other! After a few minutes, he got tired of all this and came and joined us in our talk! We gave him a hug and said "Good Boy" for joining us.

Our son was delighted and he did not go near A/C point as often and even when he did he did not fidget even once! Then he started climbing on the armrest of the chair. But soon he stopped that too for want of reaction.
The net result: Lower Stress for parents and better education for the child.

We believe that all could try this method of ignoring undesirable and reinforcing good behaviour and do a great favor to their children and themselves!

Note From A Father
Deepak Verma

So, we have come to the last month of the old millennium. Makes me wish I had something really important to say something that would be meaningful for the next thousand years. But alas, I am mere mortal -stuck with the output of one little brain, which has a tendency to ramble when feeling philosophical. I apologize in advance.

In the year 1000, nobody could read or write. Even kings and queens were illiterate. Only ones who could read and write were monks in monasteries and everything they wrote was in Latin. This added up to a pretty ignorant populace - it wasn't hard to convince this ignorant rabble that God had made special humans to rule us namely the king. Nobody knew enough to question this idiotic concept, so it hung around for another 800 years until a better educated French society finally said - hey enough, who can believe that stuff? Even after the French Revolution of l789, the concept has managed to hang on right up till today.

I cite the above as an example of the tenacity of inbred concepts. Regardless of how absurd, they die hard.

Maybe the year 2000 is a good time to prepare for the end of another concept that doesn't seem to make good sense.

I personally feel that "Autism" is not a disorder. This is only a different kind of state of mind. May be a lot different. As much as that some how we tend to believe this different thing as disorder. I know it may sound silly but I would still request you to read this letter carefully and give it a thought.

Example 1. Shikhar, my four-year-old-son is having a ride in the swing. One side of this swing is a little wall of around one-and-a-half feet and other three sides are open. After some time he closes his eyes while he enjoys the ride. Suddenly I notice that whenever the swing turns towards the wall Shikhar pushes the wall to have a faster pace while his eyes are still closed whereas when the swing moves in any of other three directions he sits comfortably without moving his legs as if he knew that there is no wall to push against (eyes still closed). I don't think any of us so called 'normal people' can see the wall with closed eyes. Can we?
Example 2. A little four-year-old girl is doing her academics and taking a lot of time in finishing her activity. Her mother is sitting behind her and the girl can't see her face. As soon as her mother gets uncomfortable she throws the pencil. Remember the girl can't see her mother but still some how realizes her mother's discomfort. The question is how?

Can WE do that?

All of us have noticed that children with autism have some divine power of doing certain things in an exceptionally excellent manner even before they are taught those particular things. Is not it true that after we are able to make them learn 1,2,3,4 they are able to do a bit advanced kind of maths without even being taught? What about Autistic savants? We generally discount it saying that these are only exceptions. I believe that they have enormous capabilities, the only thing is that WE don't know their language and THEY find our language as difficult. And if some how we know how to interact with them in their language, probably we can find a whole breed of superhumans. Probably they can see what we can't see and since they can't perceive the world like us, we call them different and think that they are some what less capable. If we ask an airline pilot to drive a trailer, may be he will smash it somewhere. Does that mean that he is less capable? Simply because they perceive something differently, we should not underestimate their divine abilities. Instead try to find out what is it that they can do really well.

I believe that in the next millennium we will let go this impression of being superior to them. In fact we need to device a much better language, the language of Autistic people in order to tap their full potential.

Please, if you too have experienced any such capability of your son/daughter, do share it with others and build on it to make him/her a complete success.

Love, peace and happiness.

Update on Open Door
Sandra Dawson

We are sure that all our readers are eager to know what the 'goings on' at Open Door has been, in the last year. Well a lot has happened with the children, the staff, and the families. The programmes have grown and expanded. Trainees and volunteers have joined. Open Door continues to move forward in leaps and bounds.

In February Jannik Beyer headmaster of the Brondagerskolen in Denmark, visited Open Door and the therapists had the opportunity of quizzing him on various aspects of diagnosis, assessment, and education. Attending both Jannik Beyer's workshop earlier in the year and Dr. Jaoquin Fuentes' seminar in July gave our therapists a wonderful chance to learn and expand their knowledge of Autism. Unfortunately, Dr. Fuentes was able to meet and talk with only two of the staff members on his visit to the Centre on a typically very busy AFA morning. But we were grateful for that too!!

We had our Annual Day function in May, which the children had a ball preparing for and presenting, after which the summer vacation was a welcome break for the staff as well as students of Open Door.

Little Pelelevi Sakhrie joined us on the Three-month Day-School-Program in July this year and left us in October to go back home to Nagaland . His family will set up a home program for him there. The children then took a break in October for Dussehra, to give the therapists time to prepare for the up coming AFA workshops and returned refreshed and looking forward eagerly to picking up where they left off. Following a very successful workshop for parents & professionals, we also had a family from Muscat attending a Week-Long training program.

We want to take this opportunity to especially thank the parents of the children who were there at the Demonstration Classroom during the workshop. Many families learned a lot from and were very encouraged by the children.

Almost 40 families have been added to the Open door family on home programs and other Intervention Programs by way of correspondence and as a result of both the Awareness Campaign AFA has been conducting in collaboration with the Rajiv Gandhi Foundation, with paediatricians all across the country, and an article that was published in the Hindustan Times in early August.

Our visitors have been quite a few too. We bid adieu to Kristi Kemp from Canada, after six months. Tracy Horton from SOAS UK was here on a field study. Rajesh, one of the research scholars from IIT who has been regularly visiting our Centre-doing a thesis on language processing affecting people with Autism, has received the 'Fulbright Scholarship' to study in the USA. AFA wishes him success!! Kamala Prasad from the Delaware Autistic Programme, US, shared with us her experience in using the Picture-Exchange-Communication-System developed by Andrew Bondy and Lori Frost. Manu Thapar from the Lions Club of Stanmore, spent time with us, and we benefited from a lively exchange of views. We have also been in touch with the West Midlands Autistic Society and last year we had been visited by Cath Hayes. This year we had the pleasure of meeting Gurdip and Sarla Singh and their sons. Gurdip Singh is the Chairman of the Parent Support Committee of West Midlands Autistic Society.

And finally as we go to press another little miracle has just happened. Little S has been on an Open Door programme since he was two-and-a-half. We have also been trying to help his parents come to terms with their beautiful little boy's diagnosis. For more than a year at the Centre S persisted in using his crying to communicate, as his mother and the therapists worked on teaching him more appropriate modes of communication. And suddenly, last week, S decided to just give up his crying! Suddenly Open Door had the most unique gift of this beautiful skipping happy beaming angel, peering into everyone's faces, communicating, wanting his efforts acknowledged, making connections! Another little miracle had happened. It was a time for celebration!

We end this year celebrating with our children and all those who have been involved in their lives this past year at our Christmas Party and look forward to another splendid year as we usher in the new millennium, as the AFA family.

Would You Like To Help AFA Continue to Grow?

This is an appeal to you, dear friends of AFA, to help us continue to do the work that has long-term advantages for all our children and society as a whole.

AFA is one of the rare organizations that have an admirable record of self-sustainability. The Government still does not recognize autism as a disability and it has been a challenge to be on our feet and running for ten years, despite the lack of financial support from the Government. The families themselves raise a large part of our running expenses. Another part comes from corporate as well as international supporters of our work. The rest, and an important part, of our needs are met through funds raised during our annual awareness and benefit concert for autism.

Action for Autism will hold its fourth Annual Awareness and Benefit Concert in Delhi on Saturday, 12 February 2000. The performers will be the well-known singer Sushmit Bose and the popular band 'EUPHORIA', a favorite among school and college students alike. AFA will premiere the first-ever Hindi audio-visual on Autism and youngsters with autism will give brief performances. The concert will be held at Dilli Haat from 7pm onwards.

Approximately 1,700 people attended last year's concert, and we expect at least this number again. As before, we look to the community for support in holding the concert. Action for Autism will bring out a souvenir brochure to mark the occasion. We would like to encourage you to show your support for the cause of Autism in India by advertising in the souvenir. Other donations too will receive mention in the souvenir. By doing so, you will help us make a real difference in the lives of many many children and their families. We will be able to train many more professionals, empower more parents, and help more children find ways to cope with their disability and grow to their full potential. All donations to Action for Autism are exempt under Section 80 G of Income Tax Act.

If you would like to contribute or have contacts in the industry,
who would be willing to contribute, please get in touch with us at the earliest,
and we will send you the advertisement forms

Helpline

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. 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. 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. 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.

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.

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.

 

Letters to the Editor

Dalmia Industries Limited of New Delhi have come out with a medicine "Lernol Plus", for treatment of mentally retarded and autistic children.

Although, so far it is known that there is no medical cure for autistic patients, gullible, "hoping against hope" parents (like me also) go for buying this medicine. Their sales people come into our homes. We placed an order for 9 bottles of Lernol Plus, for treatment for 6 months.

In case of our child 4 years old suffering from autism, giving this medicine for about a week, we felt that the child become over reactive like crying very loudly for a long time.

Upon consulting our child specialist (who knows about the autism of our child) it was recommended we discontinue the medicine not merely because of the observed effect of Lernol Plus, but the knowledge that there is no known medicine for autism. Hence we discontinued the medicine. The child appears to have become normal.

My intention in writing this letter to you is:

1) To examine the claims of Dalmia Industries that it helps improvement of autistic children (even if it would not completely cure them). The examination should be obviously unbiased since ayurvedic herbal medicine have not yet been thoroughly tested (except of course) as claimed by Dalmia Industries themselves.

2) Publish the results of the examination for the benefit of the parents of the autistic children as protection from false claims.

SUNIL SALVI
Deonar, Mumbai

I must congratulate the AFA team for the excellent presentation of your work. I think three days are not enough. I have been talking about the (Professional Training) Workshop to whomever I meet. I presented my experience and the world of the autistic in the hospital (to which I am attached). We have an autistic person in the ward right now. I have passed on a few ideas to the parents already. I have a couple of ideas, but don't know where to start or go about it. In a hospital setting it will be difficult to implement some of the ideas as the other kids who come for hyperactivity or mania or conduct disorder, get curious and interfere with the training plan. I have a small room here without furniture, which can be used for training. So let's see what can be done.

DR SITA GEORGE
COCHIN

After coming back, my husband and I discussed all those things that were taught by you people (at the parent training workshop). We really find it very helpful. whenever we will need your help, we will contact you. please don't forget to write me about your next workshop. we really miss you all.

NEHER ALI AND NAZIMA
KARACHI

Dena Farbman, a special educator based in Philadelphia (USA) will be visiting new delhi between January 22 and February 10, 2000. Ms Farbman has been working with autistic children in the us for at least five years. she has been trained in the aba (applied behaviour analysis) method, based broadly on the Lovaas experiment at the UCLA. Ms Farbman has been advising the parents of one family in Delhi on the home programme for their child.

Those interested in consulting Ms Farbman may contact me at the address below:

MADHUSUDAN SRINIVAS
X-40, Green Park Main, New Delhi -110016
TEL: 6862289, EMAIL: INDIA410@DEL6.VSNL.NET.IN

I will be coming to Delhi on 1 March 2000 to meet my Rotary group study exchange team. I will be available to do a session of auditory integration training from 3 -12 march 2000. I can be contacted on:
email: smadan@fastlearning.com

I would also like to fulfill some of the things on your Wish List.

SAROJ MADAN, M.S.

Congratulations on the wonderful job you all are doing by publishing Autism Network. I also want to congratulate you for representing India at the Autism Europe conference in Luxembourg. I was so proud to see you there, right in the front.

Kristi Kemp did a wonderful job explaining the two AIT methods available in her article on Auditory Integration Training in your August issue. However, I would like to clear a few things:

o Originally the minimum age for AIT was set to be four years by Dr Berard, which changed a few years ago to age three.

o There has never been any guarantee given by any professionals about any procedure. A parent would never know how their child would respond to AIT, until they tried the procedure.

Auditory Integration Training will be available for children and adults in Chennai, Madras from 10 - 19 January 2000. Parents and professionals and those interested in getting further information, may send their Email to:
o Email: ShardaEARS@aol.com
o Tel: 978-458-3277, 231-0968
o Website: autismusa.com, autismindia.com,
web-wisdom.com/ears

SHARDA RAMLACKHAN, M.A.