Autism Network, April 1999

N E T W O R K

April 1999 Vol. VI, No. 1

Page One

Secretin is the flavour of the month. Queries, and information, on Secretin have inundated us. In our series on therapies we cover various treatments for autism, leaving to the family or the individual with autism the selection of the best treatment or service option in their particular situation. We support all efforts to discover effective ways of improving the lives of our loved ones with autism and, while we often strike a cautious note, believe that families everywhere have the right to that information. This issue features briefly the issues relevant to the use of Secretin.

In August 1998 the Ministry of Social Justice and Empowerment constituted a Committee to suggest amendments to the Persons with Disabilities Act. I have been pulled up sternly by the Chairperson of the Committee Dr Amita Dhanda for having failed to make any reference whatsoever to the Committee and its work in the last issue of the journal. My apologies to Amita for the oversight and I hereby make amends.

The Committee, comprising of the Chairperson Dr Amita Dhanda and members JP Gadkari, Aloka Guha, Dr DK Menon, R Ramachandran, SK Rungta, Surrendar Saini, and myself, was directed to review provisions of the PD Act and suggest suitable amendments in the existing provision, or new provisions, in order to cover the requirements of the disabilities sector; as well as any other issue considered appropriate. In this task the Committee was asked to consult with State governments, Union Territories Administrations as well as major non-governmental agencies before finalising the recommendations.

In order to make the effort as consultative and participative as possible, a flexible time frame, giving the committee time to complete its task at the earliest without compromising on the quality of the work, was decided on. Members of the committee wrote to their contacts and associates inviting responses on various provisions of the act. The Committee drafted 71 pointed questions on the key areas covered by the statute. The questions were shared with other experts for further inputs and also forwarded to the Ministry to obtain feedback from Central Ministries/Departments, State Governments and Union Territories. Based on all these inputs the Drafting Committee consisting of Dr Amita Dhanda and Mr. Santosh K Rungta prepared an interim report that was submitted to the Ministry of Social Justice and Empowerment.

The draft proposals were also sent to legal, financial, and medical experts, to seek feedback on specific sections of the Act. Four regional consultations were held on the draft proposals with the endeavour to make the consultations as disability and region representative as possible. Based on the inputs from all these diverse sources the drafting Committee worked out a report, which was finalised by the committee at its ultimate meeting on 3 and 4 of March.

While the final report of the Amendments Committee is now with the Ministry, all those who participated in the Consultation can access copies of the report, by writing to me or any other member of the Amendments Committee.

An Update on Secretin
Ann Varavukula

Secretin caught the public's imagination after Dateline did an interview with Victoria Beck, the mother of an autistic boy named Parker. Parker showed remarkable improvement after a chance dosage of secretin administered as part of a series of tests conducted on him to investigate his chronic gastric problems. Prior to the secretin, Parker, then three years old, had poorly formed stools, poor eye contact, and was largely nonverbal. After the test, Parker's stools became normal, he was calmer, slept better, and after two and a half weeks, language appeared for the first time. Within weeks, he was potty-trained almost effortlessly. He showed an interest in drawing for the first time. He was far more responsive to his environment. His parents were convinced that the secretin he had received had played a role in his astounding growth, but found little support from the medical fraternity.

In November 1996, another parent reported positive changes in his son after being given the secretin challenge test as part of his endoscopy-- and the secretin connection began to take hold. Many more parents around the US (about 120 recorded cases) started their children on secretin without explicit medical sanction-- the FDA has not specifically approved secretin as a treatment. Varying degrees of positive changes in both the gastro-intestinal symptoms and the social and communicative behaviour of autistic children have been reported. There is mounting interest in conducting further investigations to extend these observations and explore the underlying mechanisms. However, it will be some time before substantive, non-anecdotal and impartial data is available.

Secretin is a naturally occuring hormone produced by the small intestine, and is involved in the regulation of gastric function. It is prepared from the duodenal mucosa of pigs. It has a dual role in the delicate dance that the endocrine glands play in our digestion. Firstly, it stimulates the pancreas to produce various enzymes that play a role in breaking down complex peptides. It also produces bicarbonate, which neutralizes the stomach acid and allows the enzymes in the duodenum to function. There are many hypotheses on how secretin may help. One is that as secretin stimulates proper digestion and assimilation of foods, it may help nourish the brain and protect it from neurotoxins in foods, which, according to proponents of the opioid excess theories of autism, may be responsible for the problems. One way to diminish the problems caused by these is to remove them from the diet, which is why people experiment with gluten and casein free diets.

Another hypothesis is that secretin stimulates the production of serotonin in the brain, which has been found to be abnormally low in some people with autism. Serotonin is responsible for many functions in the brain, including the regulation of arousal, attention and learning.

Secretin is currently administered through IV infusion. Although secretin is generally considered safe for a singe dose diagnostic use, no data has been submitted on its safety and efficacy for children. Dr. Kalle Reichelt of Norway cautions that, "...not even the most elementary animal tests with repeated injections has been done." No double-blind, placebo controlled studies of secretin have been conducted. No optimum dosage or recommended frequency of infusion has been done. Research on the efficacy of secretin is critical. Secretin is hard to get, even in the U.S., as it does not have FDA approval.

Dr. Reichelt adds, "I am not disputing the effects (of improvement in children with autism), but want to be safe. There is a vast difference between removing something and repeatedly injecting a compound not studied at all with repeated injections over probably years. I would therefore not use this before some elementary studies on repeated IV use have been done in animals. I would also make sure I only used the human secretin before the possibility of inducing antibodies has been excluded. The present preparation in only to be used once for diagnostic purposes, no one anywhere knows what repeated injections will do. After all, this is more pharmacological than physiological use. Usually antibodies will cross react, which would mean that the children thus treated would have less effective hormone than before treatment. This disaster happened with insulin. Even the exogenous hormone (secretin) would gradually lose its power and anaphylactic reactions are to be expected."

Readers interested in more information can look up the many web-sites carrying regular updates on secretin research. We would like to caution you, however, that unlike standard medical journals that have a panel of expert editors to ensure the veracity of published material, most web-sites have little or no monitoring. Enthusiastic proponents of various therapies vie with each other to carry more and more exciting stories of recovery. Parents have to use their own judgment.

To quote Paul Shattock, Autism Research Unit, UK and a parent:
-The drug without side effects does not exist. Secretin has not been used over periods of time so we don't know what will happen when it is. With products as complex as this we should expect them to occur. The benefits/advantages ration will have to be taken into account.
-There are some children with whom no effects are seen anyway.
-This could be a significant contribution or it could turn out to be yet another gross disappointment. We will have to wait and see on this one. "There is no doubt that this is an interesting development but we will have to see if it pans out. There is biomedical plausibility about the mechanism and results seem promising. Since the material is not readily available and it is not licensed for this particular use at the moment anyway, we have little alternative than to monitor progress with interest and some cautious optimism."

We want to keep in mind that even while Parker continues to be administered his doses of Secretin, he alongside receives 35 hours a week of intensive behavioural therapy at his house and school. Structured behavioural and educational intervention is the tried and tested option available to everyone.

Challenging Behaviour - An Experience
Laly Patel

Vivek, the younger of my two sons, was three-and-a-half when his diagnosis of infantile autism was confirmed by Dr Shoba Srinath of NIMHANS, Bangalore. We have had to deal with much somewhat challenging behaviour during these years. We have been successful in extinguishing many such behaviours. Our strategy has always been to be positive in the approach.

A wonderful lady who had years of experience working with nursery and kindergarten children showed me that practically all children found learning a joy given a conducive environment. The positive attitude of adults around helped them to grow into well-adjusted happy lot. In the one year that I spent in her school with Vivek I learned to see my son as a child and his autism later.

The following account of a challenging behaviour that Vivek had at the age of 5 years and how we handled it may help some other parents faced with such behaviour.

Vivek like colourful pictures and could identify quite a few common things seen around. So I used to show him picture books and magazines. These were accessible to him whenever he wanted to look at them. But one day, to my utter distress, I found that he was tearing the pages. The first thought which came to me mind was of losing my good books. I collected all the good books and put them in a cupboard and locked it. But I realised that if I deprived him of a pleasurable activity, he might find some other activity equally unacceptable to me. So why not let him have his fill in an unobtrusive way!

I left some old magazines and newspapers in the study table cabinet in his room that he could open. Periodically he would go to his room, open the cabinet, take out the papers and tear them. While he was at it he was left alone. When he finished and went out of the room I would just collect the papers and put them back into the cabinet.

We wanted him to have the opportunity of looking at the pictures and learning from them. I was thinking of getting some kind of book that wouldn't tear easily. But as you know, these children can be quite willful, so it had to be something really tough. I found my answer with a neighbour who used to stitch her own garments: Bakram, the stiff material used inside collars, etc. I bought a few meters of this material and cut it into foolscap paper size, folded and stitched it in the middle to make a book. Next I cut out pictures from charts and stuck them to the pages with fevicol, and Vivek's picture book was ready. I could give it to him without getting uncomfortable and he had the chance of looking at the pictures whenever he wanted. We got some charts with pictures of animals, vegetables, fruits, transports, etc. laminated and cut into cards so that they wouldn't tear easily.

All this while the study table cabinet was getting full with torn pieces of paper. It had reached a point where there were no more magazines and newspapers, only torn pieces of paper inside. The routine of Vivek tearing the torn pieces into still tinier ones and me sweeping them into the cabinet continued for weeks. And one fine day I noticed that there were no pieces of paper on the floor next to the study table for me to put back. The room stayed that way for many more days before I decided to clear out the cabinet.

During these weeks he used to handle his Bakram book, looking at the pictures and turning the pages and I would let him handle the laminated cards in my presence while showing him the pictures. I slowly introduced hardbound books, followed by ordinary ones. He never went back to tearing them. Now he handles all kinds of books and paper properly and continues to enjoy looking at pictures, especially food items!

We continue with our positive attitude. Vivek is now a very independent 9 year old happy boy, continuously learning to cope with the world around him, despite his disability.

Toilet Training: Learning to Wash After a Toilet Job
Indu Chaswal

Perhaps the ultimate step when toilet training a child in India is teaching her to wash herself after defecating. Washing oneself is a fairly advanced skill. We expect it from a regular child at around the age of five years. With an autistic child it can take longer. Once a child learns to sit on the pot comfortably, whether the floor pan or a commode, starts using it, and we are sure of the child's physical skills, we can start working on her washing herself.

A successful programme would be one that involves the following.
1. Break the activity into steps and teach only one step at a time. The steps involved in the process of washing oneself are filling water in the mug, pouring water on self correctly, and then finally cleaning oneself by rubbing with a hand.
2. Backward chaining can be used. Start with the last step first, so the child first learns to move her hand in order to clean herself, then learns to pour water, and finally fills the water into the mug and pours.

There are certain things that we need to keep in mind while working on washing after a big job. For instance, a child may have a fascination with water and may become so engrossed in playing with water that he forgets or is not interested in the washing process. We can find creative solutions to these obstacles. We can say something like, "We shall wash and then play with water," and hopefully, the child will then be motivated to wash so that she can play with water after she has done so.

Let's see how we actually teach the child to wash. To teach a child to rub her bottom with her left hand in order to clean it we initially use both verbal and physical prompts. We place our own hand over the child's and manipulate the child's hand along her bottom, pouring the water ourselves. Simultaneously, we give verbal prompts that are very clear and precise: 'rub bottom,' or 'move hand,' whichever works with our child. Over a period of time, anything from one week to three months or more depending on the individual child, the child will start initiating some of the movement of her hand. As we sense the movement, we begin to loosen our grip on the child's hand.
As the voluntary movement of the child's hand on her bottom gets stronger and she appears to 'take charge' of the movement, we gradually move the light grip of our hand away from over her hand. We had started with our hand directly over the child's moulding her fingers and the movements with our own. Now we slowly give up control, moving our hand slowly up to the wrist, then up the arm, elbow, and finally, to a slight pat on the shoulder along with the verbal commands. With some children we can fade the touch of our hand away by the time our hand is on her forearm; others might need the prompt longer. When we are sure that the child can move her hand, we just give verbal commands: 'move hand,' 'rub bottom.' With time, even the verbal prompts are faded away.

In the initial stages, after we have physically guided our child's hand on her bottom, we will have to clean her up ourselves. However, we praise our child for doing a great job of cleaning her bottom. With many children, after they have learnt to independently move their hand on their bottom in a cleaning motion, they might still not be cleaning themselves thoroughly. We do not then say, 'You have not cleaned properly, let me clean you up.' That would be completely de-motivating. We have to remember that she is learning a new skill. She is making an effort to be independent by moving her hand on her bottom appropriately. We want to appreciate the effort at independence. So what we do instead is say, 'Great cleaning,' or 'Good cleaning;' we want to praise her before finishing the job off ourselves.

It can take a child anything from one month to nine months or even more to master the above.

Now that we have our child moving one hand independently on her bottom the next step is pouring water and cleaning - both to be done by the child. If the child has difficulty with her motor skills, then it would be a good idea to spend some individual teaching time in activities like holding objects, turning caps of bottles, learning to pour water from one container to another in a controlled manner, and so forth. Here also we teach the child to pour water from a full container using hand-on-hand method and giving verbal prompts, 'Pour water.' Gradually we fade away the prompts. Here again remember that praise is a great motivator.

However pouring a full mug of water on one's bottom from behind is somewhat tricky. We give the child a full mug of water, and while she uses one hand on her bottom we hold the hand holding the mug and physically help her to pour the water over her bottom. As before we slowly fade our hold over our child's hand praising her for 'good pouring.'
The final step is filling water in a mug, pouring it and cleaning. We teach the child to turn the tap and fill the mug. With some children we might have to use a bucket already filled with water instead of the tap. Using simple instructions like, 'fill the mug' we go through the earlier steps of physically prompting and then slowly fading the prompt. Gradually the child learns to do all the three steps independently.

Parents often ask us if it would be better to use toilet paper or invest in a toilet jet that functions somewhat like a bidet. Both the above are simpler procedures involving far fewer complicated maneuvers. If the child has difficulty holding a mug and pouring, a toilet jet really simplifies matters. In deciding which option to go for, we want to keep in mind that a successful toileting programme aims at making the child independent in every environment, both at home and outside the home. Very few places in India will have toilet rolls in public toilets. Even fewer will have toilet jets. Most private homes would not have either. So we either decide that our child never goes out with us on outings or visits to friends' homes where washrooms are not suitably equipped; or we teach our child to wash with water. The decision is ultimately the parents.

As a child learns the skill of washing after doing a big job he is moving towards greater independence and that is important for her own self -esteem and also for making our own day-to-day living comfortable. To achieve this, we want to be very regular, persistent and consistent and maintain a lot of comfort while teaching this very important self-help skill.

Book Review
Shirshendu Chakrabarti

Life Behind Glass
by Wendy Lawson

Written in a disarmingly simple style free from technical detail, this book is a deeply moving and authentic account of one woman's heroic struggle against difficulties within and without. Misunderstood by even her family, Wendy Lawson was misdiagnosed as a schizophrenic and had to wait till 1994, when she was forty-two for the correct diagnosis of Asperger's syndrome. This is a particularly unsettling fact since the error must have condemned her to wrong treatment for a long time.

Made to realize her 'difference' from childhood both at home and the many schools she attended, Wendy experiences in her teenage an urge not to be different anymore. No doubt this change stems from her appetite for knowledge which drives her to interact with people around her. But her attempts at socialization fail at this stage because of her impaired social skills, and the resulting trauma plunges her periodically into bouts of withdrawal and depression. Attempting suicide and undergoing institutionalization, she nevertheless manages to surface each time and triumph over each setback. Even as a child, Wendy copes with the brutalities of school life, sexual abuse and academic failure. While her experiences reveal the savagery that underlies civilization, what is not often recognized is the autistic person's unique capacity for minimizing emotional injury. Here a limitation is turned into an advantage. As Wendy puts it in a tone of self-assurance: "Dr. Asperger may have defined the syndrome I was born with, but I have decided his descriptions of my limitations will be the means to remove the bars from my cage - not reinforce them".

The so-called limitation refers to the autistic person's tendency to distance himself from emotions. As Wendy confesses, kindness, affection and intimacy had a
confusing effect on her. Unable to distinguish one emotion from another, Wendy teaches herself to observe and interpret the behavioral signals of different emotions. One of the reasons behind her relationship with Tony, which results in marriage, is precisely the absence of an overpowering physical attraction: this has a curiously comforting and reassuring effect on both of them. During this period, Wendy becomes a great admirer of Maggie, a church friend, enchanted as she is by the musical and artistic abilities of the latter. By contrast, on the eve of marriage, "connection to Tony... and the reality of a lifelong committed relationship - with all that it entailed - was far from me". When they return home after their honeymoon, Wendy suffers an attack of depression and for the next two years she drifts in and out of it. Eventually, despite an earnestly undergone motherhood, the marriage fails. But Wendy manages to surface again and succeeds in acquiring even a university education.

In the very first sentence of the book, Wendy describes the autistic individual as a perpetual onlooker who observes without being able to reach the world which
passes in front of her shielded by glass. The difficulties she mentions are all characteristic of Autism Spectrum Disorder, involving sensory stimuli, emotional confusion, obsessive compulsive behavior, the desire for sameness and constancy and so on. It is this yearning for routine that had drawn her to the profession of nursing, but as soon as the prospect of taking decisions loomed up she chickened out. On holiday at a caravan park, she was afraid to sleep in case the caravan started to move.

Such symptoms are, however, well-known and the book does not throw any new light in this area. The originality of the book lies elsewhere, not in the mere contents but in the form and mode of presentation. Most books on autism are, not surprisingly, written by specialists, teachers and sympathetic observers like parents. While these have considerably deepened our understanding of the disability, they remain necessarily confined to the point of view of the outsider, no matter how concerned and enlightened he or she may be. But what does the world look like for the autistic person ? This book provides a fascinating answer to that question. The reversal of standpoint becomes Wendy's fundamental strategy for surfacing: the so-called symptoms identified from the outside become the interpretative tools with which she constructs her identity through an ever-extending consciousness of the world around her .

If the autistic individual's ability to generalize is impaired, then his or her immersion in the concrete becomes the very mode of defining Wendy's physical universe. She is intoxicated and soothed by colors, textures, and gentle noises. Whether it is her red bicycle with spinning wheels (a gift on her eighth birthday) or the variegated colors and textures of food (carrots, potatoes and green beans) or the low voice of some
person or the textures of leather, silk, fur and so on -everywhere experiences are recovered in all their concrete immediacy. The culminating point is reached in the description of the cicada crawling out of its larva. Not only does this entire process of one and a half hours keep Wendy absorbed in its miraculous beauty but she
even connects the cicadas "surfacing" with her own.

Inability to generalize thus prevents the deadening effect of habit. Moreover, it is put to great advantage in the mode of recollection that dominates Wendy's narrative. The discontinuous structure of discrete memories is consequently not a weakness but a strength, holding up a faithful mirror to our mental life. It is not entirely fortuitous that Wendy's method approximates to the fictional technique of stream-of-consciousness: in fact, the succession of memories (especially in Chapter 4 of school-life) recalls the modernist mode of composition adopted by Proust or Eliot or Joyce.

The characters around Wendy are not captured in terms of a dense cultural context: they are somewhat disembodied presences, voices, as it were. This could be traced back to the autistic person's lack of connectedness with the conventional social world. But the paring down of contextual detail enables Wendy to cut right through
pragmatic negotiations to the essential humanity (or the lack of it) of the characters. Her response to these evanescent characters (not all of them) makes us look at reality through the filter of her consciousness.

In the ultimate analysis the book seems to suggest an alternative cosmos in consonance with the autistic point of view. She agrees that her inside view of the hopes, dreams, strengths and weaknesses of autistic people may help us gain a deeper and rounder view of human nature. She acknowledges the help she receives from her friends. For instance, Ruth explains to her that she is not different people at different times, but the same person with different aspects. There is just the hint of a generalization here. Nurse Lesley's influence turns her towards religion; later, Wendy tells us that God became a baby because "that way he had a better chance to touch the stubborn, proud hearts of the human race". A way out of such self-deceiving pride is discovered in animal behavior.

It is this intellectual vanity that is seen in terms of an impairment for which autistic experience may well offer a remedy: "who can say what is 'complete' and what is
lacking? It may be that some of us just view life differently and, therefore, actually help to make up for the 'lacks' that others experience."

Update on Open Door

Following a fun Christmas Party and the winter break Open Door moved two doors away from its earlier location. The new place is well structured for everyday activities though still cramped by a limited budget! The Space Club, a group of ladies who have been helping with the work of AFA, decided to give the children a treat. They were invited to a puppet show with music, scrumptious eats and gifts for each of them. A grand time was had by all.

The Open Door outreach continues to grow. There are currently 60 children attending various programmes at the centre not including the 30 or so others who attend whenever they can from various places.

Jannik Beyer, headmaster of the Brondagerskolen in Copenhagen visited Open Door and met some of the children, staff and parents. Later Jannik conducted a workshop for 60 parents, teachers and persons with autism at the India International Centre, which he illustrated with some wonderful video footage from his school.

A very exciting development is that a growing number of families are doing intensive home programmes with their children. Some of them are now contemplating sharing and working with each others children at the old Open Door location. More power to them!

Finally, this Update will close with a tribute to the fantastic team of therapists at AFA. Their love for and enjoyment of their work, is a pleasure to experience and be a part of. When families have left for the day once sessions are over, to have a teacher come bounding into the office, jubilant, celebratory, cheering "My Angad did three today!" is nothing short of a special high. To hear this at the end of a rigorous, vigorous six hours starting at 8am, and for some of them continuing till 5pm with a brief break, need people with a special commitment and love for their work. And while AFA works to empower parents we want to take a moment to thank the very special staff who make much of our work possible.

Christmas Party
Indu Chaswal

To enjoy life and have fun is the right of every child very often children with Autism and their families live lives of isolation as relatives and friends do not understand their children's behaviour and they miss out on a lot of fun and lighter moments in life. AFA has always been working towards getting families of autistic children together with other people from the community to strengthen affectionate bonds between our special kids and the minutes to write out community they live three things that they in. During the past two to three years, friends of AFA have increased in numbers and together we organized get- togethers and concerts that have hits.

Last December, always a time for and clapping and parties (!), AFA decided to hold a Christmas party for families of children attending the various child waited Intervention Programmes at the Open Door. Anu Bakshi, a friend of AFA who always comes up with great ideas to bring happy moments to our kids, offered to host the party. On the 22nd of December over twenty autistic children from our programmes, their parents, siblings, cousins, grandparents, aunts and uncles attended the party along with the teachers and volunteers of the Centre.

The party room wore a truly festive look with colourful cutouts on the walls. Someone had brought along a little tree and a table was covered with coloured paper and heaped with gifts that Anu had thoughtfully organised for every child at the party - our students and their siblings.

It was a time for fun. The children enjoyed the games, singing Christmas carols, and had lots of things to eat: chips, biscuits, buns, cheese sticks, and above all, a Christmas cake baked by the fabulous Claire Dutt especially for our kids in the shape of a Christmas tree ! With her rousing action songs Sarah even had the usually sedate aunts and grandparents swinging their arms and their bodies and heads with as much abandon and enthusiasm as the children. It was a sight for sore eyes.

The highlight of the party was a game for parents where each parent was given a slip of paper, a pencil, and two minutes to write out three things that they loved about their child with autism (see the end of article, 'Some things that parents wrote'). When parents then took turns to read out their spontaneous thoughts about their children there were many lumps in throats and clapping and cheering.

And then it was time for the gifts. Each child waited expectantly to hear his or her name called out clearly and distinctly, and then the chant taken up by all: 'Kar-thik, Kar-thik, Kar-thik, Kar-thik...Mik-koo, Mik-koo, Mik-koo, Mik-koo." In rather typical autistic fashion, some kids did not really care about their gifts. But they all wanted the excitement of their name called out and chanted as they went up grinning or smiling shyly to Anu. The gifts were all clearly labeled with the children's names, so most of them had fun picking out their own packets, too. The older boys announced that it was a great party and could they have more such occasions. this was not just a party but also an excellent opportunity to convey the message that God wants his autistic children to participate in times as joy as much as He wants the others because He loves them as much as He loves you and me. What a great way to end the year!

Some Things Parents Wrote About How Special Their Children Are to Them...

* My child has helped me to celebrate the gift of life and the joy of living. Through him I have learnt to give unconditional love.
* He has widened my horizon; enhanced and developed me as a person; helped me to find myself as a better person through his silent loving ways.
* He is special because he is mine!
* He makes us smile whenever we are down and out.
* He changed us into better human beings.
* My children have taught me to be a better person and made me discover things in myself I did not know I possessed.
* He is so special to us because caring for him has given us a deeper and richer understanding of the world in which we live. Most of the average ambitions of life have become insignificant; that has given us a sense of proportion that would have been otherwise impossible for us.
* He showed me the path to true happiness.
* Because he has the most gorgeous smile!
* My child has made me stop and think about the things that are really important
* He has made me live in the present.
* He gives me a new view of everything around me.
* He made us develop a very beautiful and special part of our personality and life, which we never knew existed
.
Why a Support Group

For many of us who have a family member with autism, the only families that we are truly comfortable around are other families like us. These are families to whom we do not have to apologise for our child's behaviour . These are families who don't look askance when our child spins 79 times in one hour, or says, 'say good boy' 'say good boy' right through a visit. And these are often the only families with whom we can sometimes share the humour in our life situations.

Yet because of the enormous distances in Delhi or due to the frenetic pace of life, of all the hundreds of families in touch with AFA, only a very few were interacting with each other.

Deepak and Roma Verma decided to do something about this. And as a result of their initiative we now have a recharged group of parents. Already three enthusiastic meetings have taken place of which the last was a super picnic at Lodi Gardens.
There are various expectations from the meetings. The prime one of course, to quote a member of the group, is "to create a close community of families of autistic children, parents and children working together, enjoying picnics and other outings at many places in India, to develop a sense of an extended family amongst ourselves."
There are many other concerns. "We read books - learn about various therapies but when and how do we go about (implementing) it." Which gets answered with "Interaction with the other families and learn from each other…." "…meet and discuss specific problems, (receive) advise and guidance." "Being a working mother my prime concern is having a pool of therapists (can be young graduates / diploma holders) who can help in spending an hour or so on a daily basis with the child." "Build area-wise groups." "Concretize plans for (the) National Centre" "carrying on many activities for autistic children" "where all local/ state centres can be associated with us."

But the most important one is as one parent put it, "… get to know each other- children and parents and siblings - become a resource for each other." Many of the parents of younger autistic children who also have regular kids feel, 'Oh my child does not need anyone. He has his sister (or brother). " But as those with grown up children know, siblings are not there forever. Siblings grow up, have their studies, their careers, their lives. Even though they love their autistic sibling and want to do things with them they don't have the time. So when our kids are older they are lonely and alone.
But if we learn to be a resource for each other then my child with autism can go to spend the day with a friend whom he is comfortable with, and more importantly, whose family is comfortable around him.

Siblings of our autistic children too need this networking. Very often they feel confused about having a brother or sister with autism. And they need to meet other young people like themselves who too have an autistic sibling. With them they can share their confusions, frustrations and anger and know that there are others like them out there.
All this has to start with families just getting to know each other. And from building such ties, such sharing and bonding, families can develop and build on dreams of adult living centres, vocational centres and other services for our children with autism, for which parents ultimately have to take the initiative.

Abhinav Accepts His Sister
Dr. Preeti Singh

Abhinav, my son who is 5 years old was in Delhi attending a school when his sister was born in Rajasthan. Abhinav is non-verbal and is a rather sweet- tempered child. As soon as the little one was one month old I came to Delhi to be with him. My uncle came to receive me at the station and after reaching me home he stayed back just to see Abhivav's reaction. When Abhinav saw us there was no reaction whatsoever and I gave him a big hug, kissed him and told him how thrilled I was to meet him. When all my relatives had left and baby and I were in the bedroom he came and gave me a kiss and kissed the baby, so we were very happy thinking that he was happy to see us. Very soon our belief was dispelled when baby after the long journey was tired and was crying so he was perturbed and came running to slap her and we were able to prevent it from happening just in time. Then he showed tremendous signs of jealousy. Whenever he saw us holding the baby he would throw tantrums by hitting us or just by throwing things. So what we did was as soon as it was time for Abhinav to come from school, we moved the baby upstairs so that he did not see the little one being cuddled and held. Gradually we took her out in his presence and then he would come out and just sit beside her and touch her little hands and feet with a smile. Now with time he has stopped throwing tantrums and sometimes he comes to give her a kiss.

Helpline

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

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

P.B. Thane

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Q. Please give suggestions on the following: improving my son's his behaviour; difficulty in teaching, particularly math; using of drugs to control hyperactivity; he feels bad to be around Down's syndrome and mentally retarded children.

P.K. Chennai

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

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

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

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

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

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

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

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

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

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

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

Letters to the Editor

Dear Editor,
This is with reference to the 'Helpline' letter in the December 98
issue of Autism Network regarding the sensory integration therapy
facilities in India.

I am happy to inform you that we at the Occupational Therapy
department of K.E.M. hospital, Mumbai run a sensory integration
therapy and research clinic. This clinic is three years old and I see
a lot of autistic children along with children having other
development disabilities. The services offered are free of charge for
the patients registered in our hospital, but prior appointment is
required.

As you have rightly said, S.I.T. may not work in all the cases, but
my personal experience for the last three and a half years in India
and the U.S.A. has been very encouraging. Also I have seen that this
therapy is more effective if it is administered with other therapies.
S.I.T. does not directly deal with communication and socialization
problems of autistic children but it helps in handling sensory issues
such as tactile defensiveness, sensory registration, gravitational
insecurity (fear of movement) and vocalization which hamper the
child's communication and socialization. There is a considerable
literature and research work showing effectiveness of S.I. in these
areas.

I thought this brief note might be useful for the parents of autistic
children.

Anjali Joshi
Associate Professor
Occupational Therapy School and Center
K.E.M. Hospital
Mumbai

Dear Editor,
Your newsletter is simply the " the best."
Paul Rindone
Brooklyn, NY

Dear Editor,
I attended your August workshop at Calcutta - Dolna School. I am the lady with the two boys, both autistic: the elder one, ages 15, makes deals with me. Those two days really was a turning point in my life. I had been so depressed and completely lost. After those two days I began to see some hope and realised things are not as bad as I thought. In fact my dealings with my sons have improved a great deal since then so THANK YOU.
And I am also part of Hope for Autism.

I. Basu
Calcutta

Ed. note: Hope for Autism is a Parents' Support Group active in Calcutta.

Dear Editor,
I read the December issue and as always I was struck by the reader friendly style of providing information.

The editor however is so busy that she has started to forget some of the
tasks undertaken by her - I am referring to the Disabilities Act Amendment Committee of which you were a member. This is especially surprising because the exclusion of autism from the Persons with Disabilities Act was a major reason for the initiation of the amendment process. I do hope that in the forthcoming issues you will share with your readers the various deliberations of the Committee in particular the wide ranging efforts to construct a suitable legal definition of autism.

Dr Amita Dhanda
New Delhi

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Rekha Ojha

I have been working with my daughter Soumya (three and a half years old) for the past 10 months on a one to one basis for 8 hours a day, approximately 50 hours per week. From a nonverbal, withdrawn child, Soumya has changed into a child who is almost potty trained, has a lot of receptive language, and can communicate her needs well.

I would like to meet mothers who, like me, are running a home program on their own. Maybe we can help each other with new ideas and can give therapy to each other's children. Of course, this will give us much needed respite apart from being beneficial to our children. Those in New Delhi interested may contact me at:

tel: 91-263323
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Act Now!!!

The one question every parent asks without fail is "What after us?" Yet how many of us actually DO SOMETHING that will give us answers for the future? How many of us actually stop to think of real concrete things keeping the future in mind? Still, we will never stop asking. "What will happen to my child after me".

There are no magical answers. What happens to my child in the future depends largely on what I DO NOW IN THE PRESENT. If I work towards a society that will welcome my child I will have to work on it from NOW. THIS INSTANT. Not, "well he is in a school now so I don't have to worry now I will think about it when he is 18'.

ACT NOW!!! If you want to take the initiative, if you want to be actively involved, if you want to be in touch with like-minded families, write to us at:

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