Autism Network, December 1998

Home
Services & Activities
National Centre
Autism Network Journal
About Autism
Helpline: Q & A
Autism in India
Links in India
Organizations Worldwide
About Us
Get Involved with AFA
Contact Us

Action for Autism
Pocket 7 & 8
Jasola Vihar
New Delhi-110025
INDIA

Tel: 91-11-65347422
Tel: 91-11-40540991/2
Fax: 91-11-40540993

actionforautism@gmail.com

N E T W O R K

December 1998 Vol. V, No. 3

Page One

This issue is the Dec 1998-January 1999 issue for two related reasons. For unavoidable reasons we had to take a quick decision to move both our administrative office as well as the Open Door Outreach and Intervention Centre. Since disability NGOs have difficulties with both acceptance as well as finances, it took us a while to finalise the deal. Till we were certain of a secure mailing address, which we could carry in the journal, the December issue could not go into print. We wanted to wait for both our new location as well as the new telephone to be finalised so that the information could be distributed through the journal thus saving the organisation an expensive and extra round of mailing!

This is a busy time of the year. The TEACCH methods are an important component of the pedagogical method used at AFA. Our Assistant Director Sandra Dawson attended the TEACCH Summer Training at the University of North Carolina to refresh herself first hand on a method she was familiar with and already practicing.

With the support of the Rajiv Gandhi Foundation AFA has launched an all-India project with pediatricians that will lead to earlier and more accurate diagnosis for children with autism.

In August, AFA travelled to Calcutta to conduct training workshops for parents at Dolna and professionals at REACH. A group of parents there are now trying to actively establish a support group and are in the process of registering themselves as a body. We hope such exciting developments replicate themselves in other parts of the country as well.

Early-October saw our annual training workshops. Thanks to the postal strike most people received the information a bare three weeks prior to the start. Since traditionally a majority of our participants are usually out-of-towners, many of them could not get their train reservations in place on time. Some of the most persevering did however. But most interestingly we had a large number of parents of very young children, mainly three-year-olds, participating.

What marked this year's workshop from other years was the demonstration calssroom that was set up. Evaluation forms from earlier years have indicated that participants wanted to visit the Open Door Outreach and Intervention Centre to observe firsthand the AFA methods. And of course, that is not possible; in addition to being closed for Dussehra, AFA would not be able to accommodate 70 participants in the tiny centre! For those living in and around Delhi, this is not a problem because Open Door is truly 'open'! Any one can walk off the street into the building to observe sessions through a large viewing window with one way glass. Parents and professionals have been taking advantage of this unique facility since Open Door was set up, which we strongly encourage. However, no more than six or so people can view at any given time.

A wonderful solution was found and implemented at this year's workshop. A demonstration classroom with one-to-one and independent work areas, play and group-activity areas, and childrens' schedules was set up in a small room adjacent to the main workshop venue. The tiny room was planned around four children, two verbal and two nonverbal, although only three could make it in that holiday season! A camera captured events in the classroom, which was projected onto a large screen in the workshop room as a therapist explained what was happening to the audience. It was incredible and exciting to note the children's comfort in this totally new and strange environment as they checked their schedules and went about the business of the day! The demonstration classroom perfectly complemented the information shared on communication, behaviour management, teaching methods, the value of acceptance and comfort around the children that is essential in helping them grow and learn, and of course, the importance of a structure.

Early November we had our Annual Awareness and Benefit concert at the Indian Institute of Technology Amphitheatre. A week before the event circumstances made the original venue unavailable throwing everything out of gear; but Friends of AFA jumped in to help and we ended up with a wonderful Concert.

In November I was invited to represent AFA at the launch of the World Autism Organisation in Luxembourg. It was a privilege to be there and elsewhere this issue carries a brief report by Paul Trehin the Secretary General of the Interim Council.

And in continuation of our series on alternative therapies we have something on music therapy in this issue. If any of our readers have comments to add we will look forward to carrying them in the next issue. And of course all our usual features including Helpline.

We wish all our readers joy and peace and a wonderful 1999.

Alternative Therapies: Using Music to Teach
Sandra Dawson

Since time began, music has been a form of communication that animals and humans aline have used in different ways. It communciates messages, defines boundaries for flocks of birds, groups of animals or tribes of humans as well as creating a background for social gatherings. Music has developed and evolved over the years into a complex form of art that is still used at social gatherings, for communicating needs and specifiying social groups, but also for entertainment as well as therapy for people with mental and physical handicaps.

This is primarily because music as we all know has an effect on the state of mind of a person. Different kinds of music extract different responses from people. The different responses can be seen clearly if you take the examples of a rock concert and a sitar recital. While one has the audience on its feet and head-banging, the other has them relaxed and just listening. Both groups are enjoying the music...just differently.

In recent years, therapists have experimented with using music therapy with people with autism. Some have had positive results while others have shown no significant changes. As research continues, it is becomming clearer that music can be used with the autistic person as something that is therapeutic, like a good swim or deep pressure massage, rather than as therapy designed for psychological and psychiatric disorders.

Parents of nearly every child with autism will tell you that one of their childrens' favorite things is music. This is why music is used so often as a supportive teaching method for people with autism. Have you every wondered why children learn a song much better than the answers to their chemistry lesson? Or why you are still able to recall a poem that you learned at school but not the debate speech you made? The reason is that our minds are able to assimilate or learn and retain words that have a rhythm or tune much better than words that don't. With many autistic children, their ability to pick up a tune is far stronger than their ability to learn language. To be of help to the person with autism, we can use their strengths to support their weaknesses. Here are some simple suggestions on how music can be used, especially to teach.

Music can be used in its simplest form to aid in communication. Many families relate the experience of thir child with autism singing long before using any appropriate speech. Or, some children will sing lines from a song that is in some way associated with what they actually want to say. For example, as part of a group activity, a little girl sang a song with the line, "the bears went over the red bridge," and the objects used for demonstration were lego blocks. After that, whenever she wanted blocks to play with, she would say, "the bears went over the red bridge de do." Another boy would say, "Old MacDonald had a farm" when he wanted plastic animals to play with. In these situations, 'innappropriate' words set to a tune were used in an appropriate manner. So what we can do is provide children with the appropriate words to say, in a tune.

Since music is already an interest and love for many children, it can be used as a motivator to learn language that is otherwise difficult to comprehend and use. Many times we find ourselves in a situation where we feel the child understands what is said but for some reason is not following the instructions given. In such a sitution, it is simple and easy to sing him your instruction-- and you may be surprised as the child gives a willing response! Sometimes a child going through a phrase of high negativity might be unwilling to comply with any instructions. One way of getting around it would be to sing the instruction out, and this often is extremely effective.

People with autism often have a flat or monotone way of speaking. Here, music can be used to introduce variations in pitch, volume, and accent. While singing or talking to the child, voices can be changed to sound deep, sharp, squeaky, soft, loud, whispery, and so on. Other than grabbing their attention, this also helps them to learn to vary their tones when speaking. Often parents tell us that their child will not listen to a story being read. Try this: use music as a background to a story. Read to the child from a book while soft instrumental music plays. (It is often better for the music to be instrumental so the words of the song do not distract the child). One other way we use music at our school is by singing to them about things that are happening around them. This is almost like a running commentary...but in a song.

Now, as we are aware, Autism is a social as well as communication impairment. Children with autism often find it difficult to play or establish connections and cooperative interactions with other children. The things they enjoy doing may be different from what other children do and they are often on their own even when others are around. Music can be used as a base on which to build group activities, something the children will relate to and connect with. Simple songs or nursery rhymes can be taken and the words changed to instructions that will tell the children what to do during the activity.

A favourite activity at the Open Door Centre is a simple game in which each child gets a turn to puck up an object and put it into a container. The tune used is 'London bridge is falling down' but the words used are, "Amit, pick the red block, red block, red block. Amit, pick the red block, red block, red block and put it in the jar." The name is changed, of course, as the turn moves from one child to the next.

Another one that the children love is an activity in which each child has to identify himself and then follow the instructions given. It is sung to the tune of, 'Are you sleeping, brother John?'
Adult sings: "Where is Amit, where is Amit"
Child responds: "Here I am, here I am" (or the adult sings for the child while raising the child's hand)
Adult sings: "Amit, please clap four times, Amit please clap four times" (child is helped to follow instructions while they are given). "Very good! Very good!" Each child is given something to do that he likes, and that is at his level of ability.

At home these simple games can be played with two or three family members taking turns to do things that the child is familiar with or will be interested to do. One can include simple activities to do around the house like switching off fans, shutting doors, picking up toys, etc. It is basically a fun way of getting the child to be involved in the activities of others.

Music naturally facilitates play. Most of us adults, tend to take ourselves very seriously and our focus too often becomes the disability and not the child. When music is involved in our interactions, it helps us to let go and ENJOY being with the child. Just like we do when we around regular children, we can play games that involve singing and dancing, nursery rhymes, popular songs heard on the TV, and so on. We can have fun with them, too! And when we are having fun, we are sharing with them a common pleasure that so rarely happens with autistic people. When we are having fun, we are also establishing a connection that the child takes pleasure in and so will look forward to in the future. We really believe that for anyone, learning is better and faster if the experience is exciting and enjoyable. So when we are working with an autistic child, regardless of what we are teaching, music can be used to draw or keep attention, help the child to focus on what is being taught, and get the child motivated to interact and learn.

By its nature, music is structured and facilitates structure in the environment in which it is experienced. Many times, when a person is feeling extremely excited, stressed or uncomfortable, music can be used as a stress reducer. Its steady and predictable rhythm provides vestibular stimulation that, as we are aware, has a very calming effect. For those children who have hearing sensitivities, certain kinds of music acts as the much needed sound stimulus that aids in sensory integration. One thing to remember is that each child's choice of music may be different. Some may like soft music, while others prefer loud thumping music. We have to try different kinds of music and volumes before we figure out what they like and then use that as needed.

Some parents have found that they can get their children to do things on their own, if there is some music playing in the background. Music is also a great way of keeping the child occupied and keeps them from getting stressed out because of nothing to do, if the parent or caregiver is busy.

Using music cannot cure conditions such as Autism and mental disabilities, but it can help alleviate negative behaviors. The ultimate aim of any therapy used with the child with autism is social integration and communication of the child. Music therapy can be an extremely enjoyable therapy, but is is effective only as a supporting training method to more structured techniques, and should not be used to replace it.

If anyone has used music to teach and would like to share their experiences with others, please do write and we will be happy to share these!

Visitor From Mars
Bhaswati Ghosh

Hunny was the 'WINDOW MAN' - literally. He would spend the entire day gazing out of the window - tirelessly. He wouldn't speak to or interact with the other kids. Nor would he communicate his feelings or needs non-verbally. In fact, he appeared to be totally devoid of any emotion.

As I attempted to understand and decipher the silence of young Hunny, I saw myself moving a little closer to the world of autistic children. Autism - a rare disorder believed to affect at least one out of every five hundred Indians, hampers communication and social behaviour. Over fifty years of research in the field has failed to detect the actual cause of the disorder and hence no cure has yet been found for autism. The only available solution is training the affected children with communication skills.

Recently, I got an opportunity to work with autistic kids -- thanks to a colleague who has such a child himself. Although it was only for a couple of days, the experience proved vital in many ways. For one, it gave me a better and more objective understanding of Autism, of which I only had a vague and somewhat prejudiced idea. For another, it provided me a better understanding of my own capabilities and limitations.

While my co-volunteers took their time getting acquainted with the other children, I was compelled to draw some response from Hunny -- who was distinctly different from his peers. He preferred total isolation and would just stand at the window for hours together. His blank, expressionless face conveyed no feelings. And he didn't seem to have any need, interest or inclination.

I just stood beside Hunny by the window; at times I would look at him - not in awe but with a humble request in my eyes urging him to be my friend. I would gently call his name and talk to him with the confidence of having known him for a long time. But it turned out to be a hopeless one-sided exercise. Hunny seemed totally absorbed in his world outside the window. He just wasn't responding to me in any way. I was disappointed and tried to make friends with the more responsive and seemingly more vibrant kids.

However much I tried to leave Hunny alone, there seemed to be a strange bond that drew me to stand with him and 'his' window. As I went to him for the second time, one thing was clear to me -- at least he wasn't resenting my company. I was happy. I left him and sat down with little Akshay who was having fun with his colouring. Suddenly, Hunny came to me, held my hand and pulled me towards the all-too-familiar window. I was exhilarated. Hunny had chosen me of the whole lot of volunteers, to enter his world. I joined him in watching the trees and buildings outside - this time as a friend. There was more in store for me -- Hunny started smiling and giggling for no apparent reason, but his message was clear to me. He was telling me, " I am happy to have you with me." And then, he hugged me in an assured manner. My day was made.

Lack of information on the disorder is a major bottleneck in improving the prospects of autistic children. There are too many myths and misconceptions surrounding it. Autism is not a mental disorder, only behaviourial one; it is present either from birth or manifests itself during the first three years of a person's life; 80% of all autistic people are males. Not all autistic children have the same behaviourial pattern -- in fact each is distinct from the other.

And so I found out. Fourteen-year old Arpit was obsessed with his toys -- HE MAN, GI-JOE and the likes peopled his universe. He was happy to lock himself up in a room with his bag of toys, which he wouldn't let anyone touch. Also, he would speak only in imitation of a female voice (I suspected his mother's influence) and that too by way of instructions -- always. Even if he had to ask for water, the tone would be one of instructing a junior. Tiny Uttaran who has one of the sweetest of faces in the world, would just skip, jump and run all over the place. He did not speak a word but would exclaim "koo-jhik-jhik-jhik....." at random intervals. Which told you about his fascination for trains, not uncommon in most children of his age.

Akshay, who screamed and hollered for going back to his parents in the first day, could be pacified only with crayons and a white sheet of paper. While you drew out a hut, a tree and the Sun for him, he picked up the right colour to fill in the sketches. Every time he insisted on being returned to his mother's custody, we told him how happy she would be see his drawings. That would again activate his enthusiasm and he would ask you to draw the next figure for him to colour.

I noticed a distinct trait in Akshay's behaviour. He had a penchant for repeating words and phrases. It could be any thing -- things he might have heard before or some issue bugging him. Like on day one Akshay's catch line was "Mummy paas jaana hai." ( I want to go to my mother ), which he would keep repeating, however much you tried to distract him. On the second day his theme line was "Jijajee ko phone kiya ki nahin?" ( Did you ring up dear brother-in-law ? )

And it was Akshay's choice of words on the second day that told me about another common symptom of Autism -- a need for repetition or routine. Akshay would constantly repeat sentences, which had no significance for him, but has stuck with him - somehow. Another interesting feature of Akshay's speech was garnishing every sentence with the exclamation 'Arrey'. Like, " Arrey arrey, paani pina hai" (Arrey arrey, I want to drink water.) We soon found out that it wasn't too difficult to turn all of Akshay's "No"s into "Yes"es. If only you began each of sentences with "Arrey!" Akshay would happily give in.

So when he threw a tantrum over eating lunch, we would cajole him - "Arrey, arrey ! Akshay, khana khalo" ( Arrey arrey Akshay let's eat ), and in an instant Akshay would agree to have food. These small breakthroughs really delighted me. After all, there was a way to the autistic child's heart. It could be as simple as speaking 'his' language.

Even as all these children were fascinating - each in his own way, one of them was strikingly different from the rest. Thirteen-year-old Dipen looked a smart, energetic and tough kid -- with a passion for sports and cars. He was on his toes all the time -- either playing or hitting the other children. Add to this his spectacular imagination. As I sat next to him in the car, he told me that the car ahead of us had lots of diamonds and went on to explain his elaborate strategy to procure the gems. With that sort of vivid imagination, he could well make a wonderful Bollywood screenplay writer, I thought.

Actually, in all his mannerisms, actions and words, Dipen defied the very limits of Autism. At first glance you would mistake him for a normal 13-year old boy. Only on closer interaction did you get to know about his autistic traits. For, even though his world was made of grand imagination, he was almost closed to the other person's world. As long as you abided by the code of his planet, it was okay, but if you insisted on him to accept your norms, he would put up a stiff resistance. So there it was -- Dipen's communication was almost one-sided.

As I mentioned earlier, 80% of all autistic people are males. Which explains why little Vrinda was the only girl in our group. But it was for entirely different reasons that she emerged the ultimate star of the show. Barely six years of age, Vrinda has the most charming of faces and the most captivating of smiles. As if those weren't enough, Vrinda is a gifted singer. She is also obsessed with crayons. And her liking for crayons is not just restricted to splashing them on paper. It goes to the extent of her chewing them up! Vrinda is a good communicator -- she can tell you about her needs. Another reason she stood apart for in the group was her ability to express emotions. Autistic children do have emotions but most of them don't express any. But Vrinda's emotional outpourings were clear. When she had crayons in her possession, she would flash out her knocking smile. But when you took away her colours so as to dissuade her from chewing them, she would throw the choicest of tantrums. She would jump on the bed, take her voice to a screeching crescendo and remain in that state -- till you finally gave in to her demands.

Vrinda has one more queer interest -- to bathe; no matter what time of the day it is and irrespective of whether or not she has had a bath. In a queen-like manner she would command "Vrinda ko naiya karna hai" (Vrinda wants to have a bath) And before you knew, Vrinda would be happlily sitting under a tap -- enjoying a cool shower!

Vrinda's conversational style is no less interesting. Instead of the first persin pronoun 'I', she uses her name 'Vrinda' to voice her wishes. "Vrinda wants thanda paani." "Vrinda wants to take a walk in the garden" (another of her favourite past-times) and you had to be at 'Her Highness' command.

From silent Hunny to chatty Vrinda -- the world of autistic children is vast, unpredictable and extremely fascinating. In those two days of my association with these children I learnt a lot of things. The most important realization was that though their world might be different from ours, it is no less rich or vivid.

"Namaste"
Kathy Lissner-Grant

This is an aritcle I am writing for the autism journal in India. My name is Kathy Lissner-Grant. I am 33 years old and have Asperger's Syndrome. I live and work independently in Denver, Colorado. The work I do is part-time for a group home for teenagers with developmental disabilties. I am one of the people who works from 6 am - 9 am. The job consists of getting the teenagers up, ready, and dressed for school. After their buses arrive, me along with a couple of other staff people, get them on the bus. Once the teenagers leave, we clean the house. This job entails alot of physical labor. I live independently with my Himalayan cat, Aziz, and my parakeet, Dhahran.

My interests revolve around countries, maps, flags, collecting things in foreign languages, reading history and current events, and keeping up with what's going on in the world. I have the Indian flag at home, but I don't have a map of India. I have maps of the Middle East, Russia, USA, Canada and lots more. I also don't have much knowledge of Indian history. I only am familar with events after 1948. I also have a couple of things in Urdu, but nothing in any other language that is spoken in your country. My hope is for the people of your country to know as much about autism spectrum disorders as much as possible. In this country, many people are ignorant about autism, especially about people on the higher end of the spectrum.

My goal is to educate as many people as possible about autism and Asperger's Syndrome. I have spoken, written, travelled, and given information about autism. I do this because I feel it is important for people to know about people like us. Also, we are a people who want to be accepted by society. And one of the paths to acceptance is education. Also most people with autism who I have spoken to are happy being who they are, it's the society they're not happy about. They find most 'normal' people narrow and biased. Also, I hope that your government will recognize people with autism spectrum disorders. After all, India is the biggest democracy in the world and this recognition would set an example for the former Communist countries and the countries of the Third World.

Also, if your country recognizes people with autism spectrum disorders, it would be good because of the big population you have. By recognizing the millions of people with autism in your country, your country will prosper and be recognized as an example for the world, especially Asia, to follow. I am fortunate to be an American in that I have been well educated and am working and living independently. My dream is for all people with autism, regardless of functioning level, to work, live, and be the people they are in happiness and peace. If anyone wishes to contact me, my email address is:

kgrant@wishingwell.org

My snail mail address is:
Kathy Grant 1235 E. 18th Avenue Denver,
CO 80218 USA

And the Music Played On
Abhrajit Bhattacharjee

I had been waiting for this evening for more than a year. After all, not only are Action For Autism annual concerts fun, they are also evenings when we step out beyond our 'comfort zones' and give of our money, time, and ourselves. This year, the Third Annual Action for Autism Benefit and Awareness Concert, held on 7 November 1998 at IIT, Delhi lived up to this promise but was also different and special.

One of the reasons this year was different because many things changed at the last minute. Originally organised and publicised to be held at the Farmhouse Restaurant in Mehrauli, the venue had to be shifted due to unavoidable circumstances, just five days before the concert. This meant many of the original plans for the evening had to be shelved, along with a whole new publicity drive. The Open Air Auditorium at IIT, Delhi was booked, and the parents and friends of Action For Autism, who this year volunteered to organise the concert, rose to the occasion.

This last minute change in venue, not only threw a lot of logistical details out of gear, but had the greatest effect on the stars of the show. I do not refer to Val Shipley & Treble Clef or Parikrama, both who helped make the evening a success; but to the children of the Open Door Centre. Just imagine blinding lights, an overwhelming amphitheatre, hundreds of people, and not one familiar object on stage. Insurmountable obstacles for most children, but not our autistic stars. In a striking progression from last year, we were treated to solo performances. Cheers, applause and Val Shipley's impromptu accompaniment punctuated the air, as Vrinda Chaswal, Sudhirto Chakravarthy, and Neeraj Barua knock the socks off an appreciative, albeit, unfamiliar multitude. Their courage, optimism and outstanding performances that added a new dimension to the song We Shall Overcome, which all the children sang at the end.

Many people came to IIT to get rocked, and they were not disappointed. Val Shipley & Treble Clef, kicked off the entertainment, and set the mood with some slow, but serious acoustic rock. In the same vein as Clapton, Knofler and Page, Valentine's versatility and talent buoyed the entire audience. These were songs we knew, we remembered, and we cheered Valentine and his amazing voice! I believe that this is the second time that Val has performed for the Action For Autism annual concert, and I am sure that we want to see him back next year.

And then it was time for the priest kings of Delhi rock: www.Parikrama.com. Little on their web site (which, by the way, is possibly the first Indian site to have their songs available on-line), prepared me for their blitzkrieg performance. Smoky, raucous, and loud, they got the crowd on their feet and into the pit. Jim Morisson and the Doors were the order of the day, but we also heard a few original medleys, some Sabbath and more than a little of Van Halen. Parikrama also shared some of their renowned experiments with us. Particularly memorable was the fusion in the impromptu jugal bandi between Sharat's violin, Sonam's guitar, and Gyan with his tablas. Playing encore after encore, mind-blowing riffs and feet stamping medleys, Parikrama showed us again why Delhi loves them. To me Parikrama is special for more than their music. This evening was yet another example of Parikrama's support for people with disabilities, and those of us who are different, and proud of it. Play on, Parikrama, play on.

Many of us do not realise how much it takes to put on a successful show. Friends and parents of Action For Autism certainly do. It was their time, creativity, availability and initiative that made the evening soar. Whether it was making banners (and awesome T-shirts!), staffing desks, shaming friends and colleagues into donating money or even waiting outside the Farm House restaurant to let people know that the venue had shifted, the organisers deserve our admiration and appreciation. I hope that after the applause and kudos are forgotten, everyone who helped, remembers the Concert as an example of concerned people getting involved to make something greater than the sum of their achievements. People like them are inherently more powerful, concerned and qualified than institutions, governments or universities to change the lives of their autistic friends and family. That is what made the evening different and special.

Book Review
Lekha Nair

Asperger's Syndrome: A Guide for Parents and Professionals
By Tony Atwood

A child walks up to a complete stranger, holds his hand and says, " Do you like Deltics? They are the most powerful diesel trains. I have 27 photos of Deltics". She then proceeds to describe these trains in great detail, without waiting for a response from the stranger, and indeed, seems quite oblivious of his reaction to her statements.
Another child goes to meet the kids who have just moved in next door to his house and says, with great enthusiasm, but no other greeting, "Nine times nine equals eighty-one! "

Both these anecdotes might strike a tolerant observer as interesting, even endearing, if slightly odd, but hardly the sort of thing that might warrant an immediate visit to a psychologist. Yet they are used by Tony Attwood to illustrate the characteristically subtle and intriguing social skills deficits that are the hallmarks of Asperger's Syndrome (AS). These include a lack of empathy, little ability to form friendships with peers, one-sided conversations, intense absorption in a few special interests and poorly coordinated movements.

The disorder was identified in 1943 by Hans Asperger, a Viennese pediatrician, who recognised it as a version of autism, but his work only gained wider recognition during the past two decades, largely due to the work of Lorna Wing and Uta Frith in the U.K. (See references below). This book is the first which brings together, in one source, the issues of diagnosis, understanding and interventions. It is written in a clear and simple style that makes it useful for the non-specialist, yet is remarkably comprehensive and accurate enough to be used by professionals. The author is a clinical psychologist who has interacted with over a thousand people with AS, ranging from children as young as three, to a retired professor who is a Nobel Laureate. He brings a tremendous empathy and respect for the people he has known and studied, and emphasizes that often their creative and highly original thinking has contributed to the enrichment of the fabric of society.

Just as in other expressions of autism, Asperger's Syndrome is a spectrum disorder.
Each person is different and the abilities and impairments can vary widely, but the pattern of behaviors, once recognised is clearly identifiable. Yet even today, the central problem remains diagnosis. Since most of these children have fluent speech, and other than in the area of social skills, intellectual development seems unimpaired, most are not diagnosed correctly and have to deal with the consequences of their disabiliy throughout their lives, with no clinical support. The impact on families can be devastating, since the vast majority of parents don't know what affects their child, and while they cope as well as they can, they inevitably have to deal with society attributing the child's behaviour to "psychological" causes, or "bad parenting".

The book addresses the issue of diagnosis by listing all four sets of standard diagnostic criteria that have been established internationally by various professional bodies (DSM-IV from the U.S., Gillberg and Gillberg from Sweden, Szatmari et. al., from Australia and the WHO) and then goes on to elaborate on each of the factors involved in the diagnosis. The subsequent chapters address specific areas: social skills, language development, special interests and routines, motor skills, cognition and sensory issues for people across the spectrum, frequently referring to writings of people with AS.

Attwood's basic approach throughout the book, is to describe the types of difficulties experienced by people with Asperger's syndrome, put these into perspective by analysing the reasons why they occur and then give specific suggestions and clear strategies that help the person to learn how to deal with them. At the end of each chapter, there is a one page summary of suggested interventions, which serves to reinforce the material presented within.

Regarding the pivotal issue of social skills development, perhaps the first crucial step that is the key to successful interventions, is to understand that a lot of the difficulties arise because the child does not automatically understand the unwritten rules of social engagement. Knowledge that the most of us acquire through incidental learning or "social referencing" (imitating other people's behaviour, gauging their reactions and responding to them), has to be explicitly learned by people with AS. He uses the analogy of "culture shock", where someone from another culture ends up doing all the wrong things because they don't know the assumptions and unwritten rules of social interaction. Once the reasons are explained, the person copes better. The most effective way of doing this is using a technique called "Social Stories", which explain, in an objective manner, why a particular activity occurs, and why certain behaviours are expected during that time.

For instance, to teach the child to stay quiet in church and respond only at particular times, one can start by stating simply, "People go to church to pray. In church, the pastor delivers a sermon, the Bible is read and hymns are sung. During the sermon, the people sit quietly and listen. It is important to be quiet so that everyone can hear the sermon. Once the sermon is over, prayers are said and hymns are sung. Sometimes during the prayers only the pastor speaks. At other times, all the people speak. Some prayers are said silently. I can remember when to be silent by listening to the pastor and also by copying my parents." These stories are most useful if they are written down and read with the child. The statements should be appropriate to the age and maturity of the child.

Children with AS often have difficulty making friends because of their limited social skills and single minded focus on their own interests and impaired perspective taking skills. The social story technique is a very effective technique for enhancing the social skills of children with AS, so that they can learn to make friends and play effectively with their peers. Statements that show how to start, maintain and end play, such as "Can I join in?", "What would you like to do next?", "Can you help me?" etc can be taught. When he wants to be alone, instead of abruptly leaving the scene, he can be taught to say, "I want to play by myself now", in a neutral tone of voice. While the need to use such statements may seem obvious to most children, and are part of everyday conversation, this is not usually the case with AS children, who would be more likely to state the obvious and say "You won't do what I say. I don't want to play with you!", with no idea that such a categorical statement is hardly conducive to building friendships.

There is a need to explain what is normally called 'theory of mind' i.e. empathizing with another person, and imagining yourself in another person's shoes. 'What is the other person feeing when you say this? What would you feel when someone says this to you?' The author describes in detail Carol Gray's Comic Strip Conversation that uses a comic style pictorial description of the different levels of communication that occur in a conversation. Stick figures, speech and thought 'bubbles', symbols and colour are used to enable the child to see aspects that they may not be aware of. Team games and tiffin break are great oppurtunities where an aide could be with the child, clearly explain what is expected of him as a member of a team, even something as obvious as not passing the ball to an opposition team member who asks him for it.

Other useful suggestions made by the author include teaching the AS child to
use other children as cues to show appropriate behavior, explain body language, monitor and rehearse appropriate behaviour for various situations, teaching the child to not vocalize thoughts in public, helping the child with auditory discrimination and distortion problems by providing written instructions or reducing extraneous sounds and clearly enunciating sentences with pauses in between, teaching the child how to modify stress, rhythm and pitch to emphasize key words and associated emotions. Special interests can be used to de-stress, motivate and developed later in life into a career and a productive life. Given the right inputs children make remarkable progress.

There is an extended section on Frequently Asked Questions covering etiology, prognosis and a variety of doubts that often plague parents. While issues are tackled squarely, there is a humaness and a determinedly positive outlook that is uplifting.This reviewer found this a very useful well written book. The only quibble, in the writings that he quotes from people, ages would have been useful to know, while preserving anonymity.

References:
Asperger H.(1979) 'Problems of infantile autism.' Journal of the National Autistic Society.

Wing, L. (1981). 'Asperger Syndrome : A clinical account.' Psychological Medicine, 11, 115-130.

Gray, C. (1994). Comic Strip Conversations. Arlington: Future Horizons

Launch of the World Autism Organisation
Paul Trehin, WAO Secretary General

On 21 November 1998 the World Autism Organisation (WAO) was officially launched during a ceremony held in the hemicycle of the European Parliament in Luxembourg in the presence of Her Royal Highness the Grand-Duchess Joséphine-Charlotte.

The initiative for WAO was taken by Autism Europe, starting from a suggestion by Dr. Hans Wulffsberg from Denmark. This idea came from two observations:

1) There is no official WHO documentation in the field of autism. So far, WHO has no office for autism or publications on autism. Neither does UNESCO have an education program for autism. WAO will advocate for such worldwide endeavour.

2) In many countries of the world, autism is not recognised nor accepted as belonging to the ordinary disability groups. Thus autistic people and their families do not have any of the rights or access to support systems that other disabilities have. Such is the case in India and China for instance. In China on the other hand persons with many other disabilities have quite good living conditions. As for Africa, few have heard about autism. The majority of autistic people of the world reside in countries where services are either very weak or non-existent.

One reason for creating the "World Autism Organisation" is to get recognition from such organisations as WHO, UNESCO and United Nations. It is urgently required of WHO to give official approval to the most recent, relevant diagnostic instruments, publish the most relevant medical interventions, as well as the 'treatment' which is primarily pedagogical.

The other reason to create this new organisation will be to promote support to autistic people in countries where it is inadequate. This will be done through information programs and professional training.

The organisation that was announced on November 21 is the framework for starting our world wide support group. To that effect, we proceeded on Sunday 22 November, to the formation of a first "Interim" Council of administration in charge of setting up the future organization structure and functioning rules. The people present at the founding meeting elected the Council. The Interim Council then elected the following delegates to the Executive Committee:

President: Pat Mattews (Ireland)
Vice President Africa: Willelm Kabemba Lutumba (Congo)
Vice President Asia (South Asia) : Merry Barua (India)
Vice President Asia (Far East) : Conchita Ragragio (Philippines)
Vice President South America : Isabel Bayonas (Spain)
Vice President Europe : Christos Alexiou (Greece)
Secretary General: Paul Trehin (France)
Treasurer: Joan Roca i Mirales (Spain)

The other members of the Council are:
Hans Wulffsberg (Denmark)
Evelyne Soyez (France)
Kees Helmstrijd (Netherlands)
Rita Thomassin (France)

The statutes presented on 21 November are by no mean set in stone. The founding members present in Luxembourg adopted a slight amendment regarding individual membership on Sunday 22 November. It is more than likely that during the period between now and the first General Assembly in May 2000, the statutes will need to be revised in order to fit the needs and preferences of autistic people and their parents. The Interim Council has been requested to collect comments throughout the world and make proposals to the first General Assembly by which time we would like to have a maximum of countries from all continents represented.

The first General Assembly of the World Autism organisation will be organised in the year 2000 coupled with the YEAR 2000 AUTISM EUROPE CONGRESS, in Glasgow.

World Autism Organisation and Visits to Dublin, London & Brussels
Merry Barua

It was my privilege to be present at the launch of the World Autism Organistion by Self Advocates, Parents and Professionals. My journey started in Dublin. When Anne-Sophie Parent of Autisme-Europe sent me the invitation to attend the launch of the World Autism Organisation, my first concern was how to get there! Pat Mathews, President of the Irish Society for Autism (ISA) stepped in with an invitation to Ireland and an offer to sponsor my travel.

I arrived in Dublin on a cold wet November night and on a following cold but sunny Monday morning John Saunders drove me out to the Dunfirth Autistic Community, a 32-acre residential facility for 37 adults with autism. Residents live in individual apartments or shared homes depending on their preferences. Woodwork, pottery, pig farming, poultry, farming, and a deer farm are among the various vocations available to the residents. The carpentry unit is large and spacious with every kind of carpentry tool available. Much of the woodwork is done using the unique bog oak that has lain buried in Irish soil for centuries. I spent a day at the pottery unit with Eugene the potter who works with the residents. Both David who helps train at the carpentry workshop as well as Eugene are enthusiastic and extremely innovative in teaching skills and adapting and evolving ways of teaching, keeping in mind the needs of the person with autism.

The Dunfirth community has been made possible by the efforts of parents; another example of what parents in India want to understand: If we want facilities for our children we will have to work for it ourselves. No one is going to do it for us. Even during my stay Pat and other members of the Irish Society for Autism was meeting and negotiating with state health officials, for setting up of residential facilities in other counties of Ireland.

From Dublin I travelled to London. The National Autistic Society of UK was holding their annual conference The Autistic Spectrum: Theory into Action. The day before the conference the NAS had planned a meeting of representatives of International societies to discuss setting up a forum for sharing information, practice and policy, and networking. Would I be there? With Pat's generous offer under my belt, I had informed I would.

I was glad to have made it. A few years ago when I was struggling to put together legislative information on Autism for our government, Lena Anderson of Sweden was one of those I had contacted and received help from. It was exciting to meet up with her and also meet the President of the Swedish Organisation. There were others I had been in touch with, heard of, read, or whom I was meeting for the first time. For this reason too I was glad to have made it to the pre-conference meeting: the actual conference was a mammoth gathering with over 500 participants and I have difficulty dealing with very large crowds and tend to shut myself off. I would have been totally incapable of going up to these interesting people and initiating a conversation! something I was able to do with little difficulty the previous day. Perhaps this is the reason why I have no difficulty in creating a great rapport with persons with autism!

The Conference had talks and presentations by Lorna Wing, Simon Baron Cohen, Fracesca Happe, Margot Prior, Christopher Gillberg, tony Bailey, Patrick Bolton, Judith Gould, Amitta Shah and Tony Attwood amongst others.

On to Luxembourg. I arrived on a brilliantly cold morning. That afternoon the launch of the World Autism Organisation took place in the European Parliament building, which I located after slipping on some frozen ice in my silk sari over a completely deserted highway! Some of us had the privilege of receiving and being presented to her Royal Highness the Grand-Duchess Josephine-Charlotte. As one of the five who would be speaking at the launch I was in the privileged bunch! It was rather exciting to stand in a row while the Grand-Duchess shook hands with each of us. I must say I was impressed when her Highness commented knowledgeably on the work AFA was doing in India!

The launch itself was a brief and dignified affair, starting with a welcome of her Royal Highness by Gilbert Huyberechts, President Autisme-Europe, with each speaker keeping within the time limits set; an example that we in India with our verbal fecundity could well emulate.

Hans Hoegh, Secretary General International Disability Foundation made the Opening address as Honorary Chair of the meeting followed by an address by Mrs M.J.Jacobs, Minister of Disabled People Luxembourg. This was followed by an review of the situation in India by myself, of Action for Autism, an account of the Establishment of a regional South American Organisation by Isabel Bayonas of APNA ESPANA, the future role of the WOA by Dr Hans Wulffsberg, concluding with Pat Mathews Vice-President Autisme-Europe and President of the Irish Society for Autism.

The launch was followed by cocktails and dinner. One encountered a charming informality and friendliness that was quite incredible. And then the reason for the difference struck me. Of course! I was amongst families!! Each one of us was a person with autism, a parent, or other family member of a person with autism. There was a bonding and closeness and friendliness that was unique. One had the opportunity to meet with visitors from China, Congo, France, Denmark, Germany, Hungary, Ireland, Sweden, the Netherlands, the Philippines, Spain, the United Kingdom, the United States among others, and of course from Luxembourg. I was struck by the exceptionally high motivation among parents in many of these countries in taking the initiative in accomplishing services for their children. Of the events that followed on the next day, Paul Trehin has give an account in the preceding.

The next day in Brussels, thanks to Anne-Sophie Parent and her excellent arrangements, one had the opportunity to meet Theo Peeters and attend a presentation by him. Theo is a highly respected professional in training parents and professionals in the TEACCH approach in countries like Denmark, Kuwait, The Netherlands, Qatar, Russia, Saudi Arabia, and Sweden.

As a Professor of Literature interested in neruro-linguistics Theo was introduced to Autism and seduced by the subject, and went and trained at Chapel Hill in North Carolina. Illustrating the truth that an interest and love for the subject is way more important reason for involvement, than a degree in Special Education or background in Psychology.

Theo's great strength other than his obvious love for the subject is the total lack of jargon in his presentation, so beloved of many practitioners. As he put it, "When I am using complex unfamiliar words, perhaps I have not understood my subject too well!" We look forward to Theo Peeters coming to India and sharing his training and attitude with parents and educators.

On a Purely Academic Note...
Tamara Cohen Daley

While of little practical interest, it is nevertheless intriguing to look back at the history of Autism, and particularly the history of Autism in India. Since the late 1950's, articles have appeared in Indian medical and social journals and books in which the authors describe cases of pervasive developmental disorder, using the terminology of the day. However, it is also interesting to ponder the possibility that reports of what we now call "autism" may have appeared under different names prior to the 1943 article in which Leo Kanner named it so.

In possibly the first reference to autism and the pervasive developmental disorders in the Indian literature, a report comes from a Viennese pediatrician A. Ronald, working in Darjeeling at the time. Ronald presented an overview of the detection, causes, types and treatment of what he termed 'abnormal children' in the very same year as Kanner's hallmark publication: 1944. This article holds significance not only for its potential early reference to autism, but because it is one of the earliest scholarly discussions of child mental health in the leading medical and social journals of the time, and the first in the Indian Journal of Pediatrics.

Ronald devotes the article to discussing various types of "difficult" children, including the "deviant" behavior of anger, disobedience, lack of cleanliness, vanity, lack of politeness, jealousy, lying, and fanatically truthful children, as well as 'frightful children'. At the end of his discussion, Ronald adds one final type of "difficult" child, what he termed the "precociousness of a child." What follows is his description.

"The precociousness of a child is not always limited to specific spheres, not to conception alone, on the other hand, it extends to the whole of mental personality…such children are quite different from others in respoect of behaviour, speech, movements, and work. The child-like conduct has partly or fully disappeared, the mental attitude of such a child becomes somewhat strange and repulsive…such children are no longer child-like, they do not play and are not cheerful. Partial precociousness shows itself in the development of a particular sense, for example, musical sense, calculations, mechanical handling, and so on. In this group is included the so called prodigy…" (p. 24)

This description, while tantalizingly short, highlights a number of the same areas as Leo Kanner in his 1944 article. Ronald notes that this type of problem does not just effect one area, but 'extends to the whole of mental personality.' Today we might call that the "pervasive" aspect of the disorder. Ronald's observation that the 'child like conduct' of such children is compromised, and that play is absent; one of the most salient features of a young autistic child. Just as Kanner noted, Ronald also remarks that these children may show a special ability in an isolated area, yet concludes with the foreboding caveat that despite these abilities, these children, "who do well in school and go ahead of others, do not always succeed in after life." As any parent of a child who has remarkable mathematical or other abilities, or whose child passes his exams knows, these talents do not necessarily guarantee that the child's adult life is secure.

Certainly it is conceivable that Ronald is referring not to autism, but rather to children with a less pervasive problem. Yet the possibility remains that Dr. Ronald may just have provided history with another early description of Autism-- and all the way from India!

The TEACCH Training Workshop
Sandra Dawson

Chapel Hill, a tiny town making up the triangle of towns ( Raleigh, Durham, Chapel Hill) houses the University of North Carolina. The university grounds roll over acres and acres of land, land that is covered with pine and other trees, lining every road, clustering to form tiny forests … and every now and again opening up to small ponds that invite the local ducks for a swim. I had the opportunity to visit this pretty town for the Summer Training Program at TEACHH (Treatment and Education of Autistic and related Communication handicapped CHildren), a division of the Dept. of Psychiatry at the University of North Carolina.

The training itself was held at a local preschool where the TEACHH staff had set up a demonstration class. The five days of the program were intensive and demanding because there was so much to learn. Though I have been working using some of the TEACHH method, at the Open Door Centre, this first-hand experience has contributed a great deal to my training as a therapist.

The program started off the evening before the first day, when the participants staying at the hotel met for coffee and snacks. Gary Mesibov, Director TEACHH, was there along with Alice Wertheimer one of the Trainers who is also a parent, to welcome the group. There were people from all over the USA and a group of about six from Puerto Rico. They felt they had come a really long way for this...until they met me!! After a couple of days I got quite used to hearing "India! My goodness gracious! Are you very jet-lagged??"

That evening, just meeting people and sharing made me impatiently look forward to the first day of the program. TEACHH has conducted studies and research in teaching methods for many years and has developed a whole new approach to training people with communication handicaps. The strategies involved were developed at the time when Dr. Eric Schopler, Dr. R.J.Reichler and Ms. Margaret Lansing were working with Autistic children during the 1960's. As understanding of the disability grew it became clearer that treatment of the autistic individual with psychoanalytic therapy, based on the premise that autism was a psychological illness, was not effective at all. What was really required was the construction of a program that would involve the family of the child as co-therapists, and that they be taught a special education approach that could be tailored very specifically to their child's individual need based on general guidelines.

The TEACHH method was described as a supporting teaching-aid that can be and must be adapted to specific situations in order to be truly effective. The aim of TEACHH is two-fold:
a) To gain control of the teaching setup…and then give it back to the children.
b) To teach independence.

What makes the TEACHH approach different is that the focus is on the environment more than the child, though they are really our guides. It tries to bring changes in the physical, social and communicating environment to accommodate the difficulties people with autism have while training them to perform in more appropriate ways.

TEACHH also focuses in on the fact that people with autism are extremely strong visual learners. Therefore the addition of visual clarity to teaching anything produces better results. A word commonly used and heard at TEACHH but taken very seriously is 'STRUCTURE'. It is their strategy. Structured Teaching is basically a layered module of working that helps to communicate in a visually clear manner and built receptiveness, understanding, organization and finally independence.

There are different ways of building structure in the child's life. Some of them are physical organization of furniture, division of activity areas, schedules and work systems, clarity of instruction and organizing time.

On the first day, Roger Cox, the director Education at the University, give us an overview on Autism. He helped put it into perspective and briefly summarized what autism is all about. He then went on to introduce to us what the training program would involve and familiarized us with the five children who would be in the demonstration class.

From the second day on, most of the program was practical work. We were each given the opportunity on different days to write in the child's diary, do an assessment, prepare independent work and prepare an independent game for the children. Different children were assigned to us each day. Each one unique…and yet so incredibly alike; some so similar to our children at the Open Door Centre!

The demonstration classroom was set up on the guidelines TEACCH has laid down, and accommodated the five children we were going to work with during the program. The room was physically divided into clearly demarcated work, play and and social activity areas. Each child had a schedule to follow that clearly showed a sequence of activities to be completed in the day. Picture or word cards were used to communicate to the child where he is supposed to go or what he is supposed to do. The illustration on the card was specific to the area (e.g. a book to denote the reading area, a tambourine to denote music time etc.). so the child knew exactly what was expected of him as soon as he saw the card.

The entire day had two one on one sessions, that lasted ten minutes each, one independent work time, one snack-time, one tiffin break and one group activity for each child. We were allowed to observe and plan for each of these sessions through the days of training. No group was given any help at all, which meant that even the ideas for the activities had to be completely original. There were people from various backgrounds of teaching and training in my group… some who had and others who had never had any experience with the TEACCH method. Sharing and combining our experiences with children, to create activities based on this new approach was quite exiting. Watching the children follow their schedules so comfortably and willingly was a great motivator for me.

Interestingly but not surprisingly, structuring social activity such as play was the most difficult. It 'close-ended' and shortened social time in such a way that it became work. But then autistic people work much better than they play and structuring play helped them feel more in control than unpredictable and open ended social situations. Tyler the five-year-old we planned the game for had never enjoyed a game of basketball as much as he did this one. Jesse the high functioning boy in the group has recently started attending a regular school. The teacher makes a special effort to provide a written schedule that helps him go through the school day without getting frustrated or confused. At social times during the day he is mostly on his own, but in a designated area which keeps him calm and happy.

At the end of the five days, we had an evening meal together with some of the high functioning autistic young men. The one at our table joined in the conversation whenever possible. It was very interesting to hear his opinions about the college basketball team (which he hopes to be part of), the town, the government and life in general. The entire staff of TEACHH is wonderful and committed. One could see them truly enjoying their work and growing more respectful and proud of the children they work with, with each passing day and each step of improvement.

It makes so much sense to help a child the way he or she needs to be helped rather than stick to old, run of the mill, completely ineffective methods. TEACHH methods can be used alongside other methods to make them more effective. The structure provides a strong base for other therapies. A little bit of structure for the person with autism can go a long way in helping him learn faster and better.

We have adapted and brought in some basic guidelines to structure the Day-Program at the Open Door Centre and hope to do more in the future too. We are already seeing positive results as the students feel more in control and independent. In the following issue we will discuss the TEACCH method in more detail so that if there is anyone interested in setting up the structure for their child, they can do so.

Helpline

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Letters to the Editor

Raphael is a little miracle in our lives. When I first made contact with you Raphael was clearly an autistic child who along with having several other deficits, was non verbal, barring just 5-6 words vocabulary.

Now he is a happy child who speaks all the time, of course not like any other six year old but showing better and better use of language and using it as an effective tool for communication. Although he does exhibit echolalic use of the language at times but it seems that he is trying to practice, previously heard sentences and also using them to communicate. Sustained conversation is still difficult, but mostly his language is meaningful. His receptive language is even better than expressive language. In al other development areas he has made remarkable improvements, including sociability and self help. (plays with brother all the time, and has learned swimming too) His diagnosis would rather be Semantic Pragmatic Disorder now than Autism !!!

But changing diagnosis is more of academic thing, because our treatment approaches remain the same which are based on his situation and needs. He is back with us in Karachi and we are trying to put him in a mainstrem school on a part time basis and at the same time providing special language classes.

Regarding progress in Karachi, following Dr. Mesibov's visit only my self went to Division Teacch to get the training there. Another school setup a classroom for autistic children but according to my information they do not have specially trained staff for that purpose. There are two more schools who have a classroom each for autistic children but they also probably have the same problem. . These three schools are serving for various kinds of physical and mental disabilities since long time already. In any case the schools are making some efforts in this direction and may be in near future we will have a better setup here too.

As for myself, I have started a school (finally) for autistic children and now have three students. The name is Autism Institute and its address is, 62-K, PECHS Block 6. Karachi.

Dr Shoaib Ahmed
Karachi, Pakistan

Thank you for the wonderful workshop on Autism you conducted in August 1998 at Dolna, Calcutta.

Though I am not the mother of a child with autism, I have to counsel parents at MENTAID and help in assessment of the children. The workshop has helped me tremendously in identifying children who may be autistic. The practical examples you gave made all the difference.

I wish the autism movement every success and hope the Calcutta Chapter will open soon, so that we too can refer children to an appropriate place for education, instead of being compelled to absorb them in Centres with the mentally handicapped.

It was also good meeting Neeraj. The very best for the future of Action for Autism.

Iona Kundu
Director, MENTAID

Announcements

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 c/o Action Now.

Rett Syndrome Association of India

It is proposed to form a Rett Syndrome Association of India which would be a non-profit association, with the following objectives:

~ bring together people whose children or family members are afflicted with this disorder
~ collect information on the studies being conducted in this field and the treatment usually recommended
~ find out possibilities of rehabilitation for patients, in order to bring them to the mainstream to the maximum extent possible

In short, a modal agency which would address all the issues associated with this disorder. Those who are interested in joining the association may contact:

Roney Mammen
27/3383 Makkar Lane
Perumanoor
Cochin 682 015
Tel: 316753 Res
Telefax: 321524 Off