Autism Network, April 2000

N E T W O R K

April 2000 Vol. VII, No. 1

Page One

As long as there is hope of a medical cure, new miracle cures for autism will continue to be reported. Even before the dust of the galloping excitement over Secretin has settled down there is excitement over Vitamin A in cod liver oil, and Urocholine, 'an alpha muscarinic receptor to increase bile and pancreatic secretions and indirectly stimulate hippocampal retinoid receptors.' As long there is hope and miracle cures there will be families who would want to give the new cures a shot. As a parent I know just how strong is the urge to try out anything new just in case my son was THE ONE in the entire spectrum who could benefit from it. And it is so understandable that parents who have the resources will follow through on their urge.

However, what is of real concern is the unnecessary everyday medication that frequently appears to happen with children with autism in India. With greater levels of awareness, a still small but significantly increasing number of children are receiving diagnosis at an early age. Along with the diagnosis they are put on medication to 'control hyperactivity'. No information is given to the parents bar something like "Iska 'hyperactivity' control karna hai." No guidance is given to the parents on how to develop communication or other significant skills. And parents go home safe in the knowledge that they have been given some 'medicine' that will help their child.

AFA has at least one new family referred to it each week. A large number of these, some as little as two-and-a-half and three, are on some form of medication, like Ritalin or Haloperidol. Sometimes when asked to describe the hyperactive behaviour for which the child is receiving medication, parents say, "He does not sit unless if we ask him to sit". Or "Haath aisa karta hai". No parent ever appears to be informed of the side effects of these mostly psychoactive drugs.

What really needs stressing is that there is no medication that will cure autism. Sometimes medication can help deal with some of the symptoms of autism. What we want to reiterate again and again is that we want to first use behavioural methods. Medication if at all used should be the last resort when every other method has failed. In this issue we carry the first part of an article which briefly outlines the use as well as the side effects of the different more widely prescribed medication.

Another area of concern is drug manufacturing companies going into peoples homes to sell their products to desperate families. One such company puts out large attractive advertisements that generally praise the efficacy of the product, in the print media. They then collect addresses of families, visit them in their homes where, away from any possibility of being brought to book on charges of making false claims, they tell families how their product cures autism, how such and such well-known school swears by their product, how there are hundreds of children with autism who are nearly cured after using their product. Unfortunately we have no way of protecting families from such ruthless operators who feed on the vulnerability of families to make their riches.

On a cheerier note: AFA has learned that it will receive land for the National Centre for Autism at Sarita Vihar; a millennium gift from the Lands Authority. Thank you DDA!

List of Additions to the AFA Library
(for complete listings, click here)

1. My Brother Sammy by Becky Edwards and David Armitage, The Millbrook Press Inc. USA
2. Supporting the Families of Children with Autism, by Peter Randall and Jonathan Parker, John Wiley & Sons Ltd. UK
3. Pervasive Developmental Disorders (Finding a Diagnosis and Getting Help For Parents and Patients with PDD-NOS and Atypical PDD), by Mitzi Waltz, O'Reilly & Associates Inc. USA
4. Learning and Cognition inAutism, by Eric Schopler and Gary B. Mesibov, Plenum Press, USA
5. Brother & Sisters, by Thomas H. Powell & Peggy Ahrenhold Gallagher, Paul H. Brookes Publishing Co. USA
6. The Handbook of Autism, by Maureen Aarons and Tessa Gittens, Routledge, UK.
7. Play & Imagination in Children with Autism, by Pamela J. Wolfberg, Teachers College Press, USA.
8. Education of Children and Young People with Autism, Guidelines for Special Education by Rita Jordan, UNESCO.
9. Autism from Theoretical Understanding to Educational Intervention by Theo Peeters, Whurr Publishers Ltd. UK.
10. Legal Order and Mental Disorder by Amita Dhanda, Sage Publications, India
11. Teaching Language to Children with Autism or Other Developmental Disabilities, James W. Partington & Mark L. Sundberg, Behaviour Analysts Inc. USA
12. The Assessment of Basic Language and Learning Skills, Scoring Instructions and IEP Development Guide, James W. Partington & Mark L. Sundberg, Behaviour Analysts Inc. USA:
13. The Assessment of Basic Language and Learning Skills, An Assessment, Curriculum Guide and Skills Tracking, James W. Partington & Mark L. Sundberg, Behaviour Analysts Inc. USA:.

Wishlist
(has a separate page)

The Use of Medication for People with Autism
Irina Dragulev

Though there is no medication that can cure Autism, the quest to find medical solutions for the accompanying challenging features is an ongoing one. Autism is a spectrum disorder, which means that people display a range of symptoms that vary from person to person. This also means that no one method of treatment will prove entirely effective for all individuals. There are no medications that have been found effective in the treatment of autism as "a whole" because autism is a collection of symptoms. When medications are used to treat an autistic child, they are used to treat a particular symptom or a group of related symptoms.

Most medications used to treat autism were developed primarily to treat some other disorder, and then tried on autistic children or adults because of overlap in certain symptoms. It seems logical to assume that drugs that are used to treat hypertension, aggression or compulsive disorders in children, will also work on those symptoms in children with autism. In some cases, people with autism have benefited from medication to control symptoms such as anxiety or self-injury, aggressive behaviour, hyperactivity, seizures, depression, or extreme anxiety. These states can interfere with an autistic person's ability to learn and cope in the world. When these behaviours are severe and unresponsive to other treatments (e.g. behaviour modification or special education), medication could be considered. However one has to be certain that the child has received behaviour modification or special education that was appropriate to the child's needs before considering medication.

It is very difficult to classify a certain kind of medication as beneficial to autistic people, since a medication that works with one autistic person can be ineffective for another. Autism is a heterogenous disorder with different subtypes. There are no tests which can determine which medicine will work best for a given individual. Finding the right medication for a particular individual with autism will take a lot of learning by "trial-and error". Because of the huge variability of individual responses and the variation in dosages required, it is impossible to predict outcomes. The physician, the individual with autism, and the caretakers will have to be prepared for a period of experimentation before the most effective combinations can be determined.

Groups of medications commonly used with individuals with autism are the anti psychotics (or neuroleptics), the anti convulsants, the anti-anxiety drugs, the anti depression/anti mania, the sedatives, the stimulants and opiate blockers. Vitamins are also used as alternative therapy.

Anti Psychotic/Neuroleptic Drugs
Neuroleptics have been fairly well studied in the treatment of autistic children. They are usually tried after other medications have provided less than satisfactory results. They are used only for severe problems in which reasonable alternative treatment has failed. Neuroleptics are the most likely to produce side effects. Haloperidol is basically used when the child's activity level is self-endangering or a danger to others. It is a higher potency neuroleptic, and most often it is tried only after trials of lower potency medications like Mellaril, Tofranil, Ritalin, or Anafranil have failed to produce the needed results.

Though some of the symptoms of autism can be treated with neuroleptic medications, the cost-benefit ratio needs to be carefully evaluated. Children who appear to benefit in some ways from these medications still remain autistic and severely handicapped. Other medications from this class include Mellaril, Stelazine, Navane, Orap and Thorazine.

Anti Convulsants
Children with autism are particularly vulnerable to the development of seizure disorders. Seizures may begin in infancy, early childhood or in adolescence. Seizures in individuals with autism usually require long term anticonvulsant medication. The objective in the treatment of the seizure disorder is complete control of the seizures, or at least a reduction in their frequency to the point where they no longer interfere with physical and social well being, as in some cases complete seizure control may not be possible. However the bottomline is that if a child has seizures, medication cannot be avoided. Therefore the medication has to be given intelligently and in consultation with a good paediatric neurologist.

Generally, the guidelines for anti-convulsant therapy are:
1. treatment should begin with one drug, if the drug does not control seizures, it should be discontinued gradually while a second drug is tried and its dosage is increased
2. any alterations in drug dosage should be made gradually, usually not more frequently than once every 5-7 days;
3. once seizures are controlled, the medication should be continued for a prolonged period of time;
4. the blood levels of those on anti-convulsants should be determined at all times
5. anti-convulsant medication should be withdrawn gradually.

Anti Anxiety
Although these drugs technically fall under the antidepressant category, they act as anti anxiety agents. Often some anxiety medication may help for a time and then the effect seems to wear off and an increased dose is needed to achieve the same effect. This limits their usefulness for longstanding chronic anxiety. Sometimes anti anxiety drugs such as Valium and Librium lead to an increase in unwanted behaviours because the individual loses what little impulse control he had.

Anti Depression/ Anti Mania
Teens and older persons with autism occasionally experience other symptoms, such as depression, and compulsive behaviours. These may be difficult to diagnose in non- or minimally verbal individuals, but close observation may give clues.

Anafranil and Prozac are the most common anti depression drugs used. Lately, Prozac (Fluoxetine) has been promoted as causing fewer side effects than other anti depressants, and in decreasing symptoms of Obsessive-Compulsive-Disorder. Prozac seems to be most effective when a clear cut superimposed depression is present in the autistic patient. Side effects of Prozac include nausea, nervousness, headache, insomnia, dry mouth, constipation, urinary retention, and skin rash.

Sedatives
Sometimes sedatives or sleeping medications are prescribed for a person with autism who does not sleep and to allow the parents to get some much needed sleep. Sleeping medications are best used to help set a sleeping pattern along with setting a bedtime routine. After the routine becomes set and the person is used to sleeping in a normal pattern, the medication is gradually and slowly withdrawn. This may take several months to accomplish. Medications, which have been commonly used, include Chloral Hydrate/ Noctec and Benadryl. Valium is another medication for use with severe sleep problems.

In India, Benadryl is used for other sleep disturbances such as increased sleep latency, excessive wakefulness and excessive restlessness. In some individuals, these medications can cause paradoxical excitation, drowsiness and dizziness.

Stimulants
There is a disagreement about the effects of stimulants in autism. It is now generally accepted that stimulants are efficacious in decreasing restless, impulsive behaviours and improving attention span in these children. The most common side effects are irritability, hyperactivity, and loss of appetite.

Ritalin is one of the stimulants that has been used with children with autism who are hyperactive and have problems focusing their attention on a task long enough to learn it. Some children with autism appear to benefit from Ritalin, Dexedrine or Cylert showing increased attention and concentration. However, Ritalin/ Dexedrine often decrease a child's appetite. Some parents have reported that sadness and temper tantrums increase, and some children have 'rebound' hyperactivity in the late afternoon when the effects of the medication wears off or mild insomnia for the first few days.

Some high functioning adults with autism use Ritalin to decrease distractibility and help themselves focus.

EDITOR'S NOTE: This article will be continued in the August 2000 issue of Autism Network..

Social Stories
Lekha Nair

Most people with autism have difficulties in learning appropriate social behaviour. They can however, learn very well, if the reasons for the required behaviour are explained and the response that is expected of them in a given situation is clearly stated. A very effective technique to teach appropriate behaviour is through social stories.

Social stories explain in simple language the events that take place in any social interaction. They can address everyday actions such as greeting, waiting, and brushing teeth, give the child guidelines for playing with other children in the park, or prepare the child for a change in routine such as a trip or the arrival of a new sibling.

Social stories need to be tailored to the language comprehension of the child. But even the simplest of these stories have been found to be effective. The stories given below are meant for different levels of language comprehension. They have been written by parents, caregivers and friends, by carefully examining the situations they are trying to address. These can be modified to be used with your child by inserting references to the people in his/ her life and the situations he/ she may encounter.

Here are some examples of social stories:

1. Being Clean
When I am in school, there are many other people around me.
The people are other students, teachers and the people who work in the office.
Open Door is a clean school.
All the people who work here like to look nice and be clean.
I must be clean too.
I must wash everyday and wear clean clothes to school
That is part of my responsibility as an Open Door student.

2. Social Skills
People need to have social skills to get along with each other.
Social skills are things that I can do to make friends.
One important thing is keeping my body private.
It is not nice to put my hands in my pants.
It is not nice to pick my nose.
This may upset other people.
My teacher said to me, "If I don't do it, you don't do it".
My teachers can help me learn about social skills.
I can look at my teacher to see how I should act around other people.

3. Independent Work
I have four teachers: Ms. S, Ms. L., Ms. M. and Ms. H.
My teachers have a lot of things to teach me and the other students.
Sometimes my teachers give us independent work to do.
Independent work is reading or writing that we do by ourselves.
Independent work shows the teachers what I already know and what I need to learn.
I use my pencil to do my independent work.
When I finish my independent work I must put it in my 'Finished' tray'.
I can show the teachers that I can work quietly by myself.

4. Using the Toilet
All people need to use the toilet.
We use it to remove waste material from our bodies.
My body lets me know when it is time to use the toilet.
When this happens, I should go and use the toilet right away.
If I wait until later, I may do harm to my body (get an ache in my tummy) or soil my clothes.
Sometimes I may be busy reading or playing when my body makes me feel that it is time to use the toilet.
Then I can remember to stop what I am doing and go to the toilet right away.

5. Greeting
When I see someone I know I can look at their face and smile.
I can also say 'Hello' or 'Namaste'. This is called greeting.
I do this to let the person know that I am glad to see them.
I can also greet in a different way.
Sometimes I may shake the person's hand.
Sometimes when I am visiting a relative or close friend, I will give them a small hug or a pat on the back or shoulder.
Sometimes if I am passing someone I know in the hall, (or on the road), I can just smile or nod my head.
Most people like it when I smile at them.
Smiling can make people feel good.

6. Listening
There are lots of times when I have to be a good listener.
We all have to be a listener at certain times.
We can listen in a lot of different ways.
I listen to my teacher, parents or friends when they talk to me.
I need to be quiet and stay still when I am listening, so that I can hear what the speaker is saying.
I listen very closely and if I don't understand, I ask nicely for them to tell me again.

It is important to listen nicely when people are telling
me things.
It is also important to listen when my teacher is trying to teach me something new.
When I listen, I try to be still.
I can think about what the person is saying.
If I want to say something while someone is talking,
I try to wait until the person has finished speaking and then say what I have to say.

The idea is to really explain what is going on and how others feel, and WHY the behaviour is/ is not helpful, not just to say to the child "you should/ should not do "x".

How I Use A Social Story
Mini Verma

This is a Social Story (see below) which I frequently use with my son Rahil. I read to both my kids before they go to bed. It is usually repeated several times until they memorize it. I have deliberately used very simple language and short sentences for better readability and ease of memorizing. The text is coloured in the colour which Rahil likes. If possible pictures can be added for generating interest in the child. The subject of the pictures should be pertinent to the story written.

These are the steps we follow in using this with Rahil:
1. Initially, I read it to him before putting him to bed.
2. This is repeated until the entire story is memorized.
3. To achieve this result, I sometimes tell him to shadow-read.
4. In the actual situation (when the situation being discussed in the story actually occurs) he is prompted to repeat that story, especially the lines where he has to breath slow and nice while counting. He is also prompted to act out the actions specified in the sentences. Actually the story itself is a series of actions (exercises) to be performed one after the other. Many other such stories can be written and the child made to practice to achieve the desired behaviour.
5. He has learned to practice while he is angry or while throwing tantrums, and he has also learned to initiate the practice session on his own. He sometimes on his own involves me in the practice.
6. So far he is at a level where tries to control his tantrums, but he still is not at a stage where he can fully control himself. He is on his way, though.
7. This has been made possible by concerted efforts both at his school and at home.

Conclusion
These stories can be created out of every conceivable situation. These stories can provide information right from how to brush your teeth to how to greet people. These can also be used as a starting point for any behaviour modification.

When I Get Angry

Sometimes, I become angry.
All people get angry at one time or
another.
When I get angry, I will breathe
nice and slow.
I will breathe deeply and carefully.
I will count 1 2 3 4 5 6 7 8 9 10.
Next, I will go to Mini.
I will tell her that I am angry.
I will tell her what made me angry.
I will try to stay calm.
This will help me to feel better.

Update 2000
Kathy Grant

Kathy is on the autism spectrum and a friend of AFA

Let me update everybody in India who reads this on what has been going on in my life.

AS of now, I have a job as a data entry operator for a company that enters in journal articles. The job isn't far away from where I live and that is good. I work 16 hours a week and hope to get more hours soon because I like what I am doing. Most of the journal article titles I enter in are of a scientific nature. I learn more and more about the different areas of study that people pursue and I find that interesting. I also like entering in the names of the people who wrote them. And yes, I have even entered in names that are Indian.

I got this job from the help of Vocational Rehabilitation and from a person who was assigned to me to help me. This helped a lot. I have a belief that people with autism need help when it comes to finding jobs. I hope in your country that is happening. It is a great loss when people aren't using their talents just because they are a little bit different.

Everybody needs to have a purpose in life. If there is no purpose in life, then life is not worth living. I know, last year I felt this way. 1999 was not a good year for me. I have problems with depression and had to be hosptialized for three days because of it. After that happened, I started to have someone come to my place once a week to help me with different things. That has been a big help. This person still comes and I treasure that time. I will always need some type of support, and realize it's not a bad thing. Being an American, brought up in a culture, where the individual is everything, I had to learn that I can't do it alone on everything. I still live independently, but a little help doesn't hurt. Also, I have grown closer to my family and they have been very helpful in the last year. I learned that interdependence is one of the keys to having a good life. I think that my country hasn't learned this lesson yet. We live in a culture of violence and one of the most violent acts any one can do to anyone else is not help him/ her out in times of need.

I am also taking a Spanish class because in this part of the country it is vital to know some Spanish. There are many people in Colorado who originally come from Mexico. Also, one of my dreams is to speak, read, and write Spanish well enough so I can do some autism work in this area. Not only do people of Hispanic descent in the US need this, but the peoples of Latin America need this. People need hope that their autistic loved one(s) can do things and live a good life. And by doing it in their own language would be of great help.

Also, I do other things like watch my favorite shows on TV, read, do crossword puzzles, and go to church on Sundays. I hope, that in time, I will meet new people because I want to pursue other interests I have like geology and history.

My email address is: kgrant5709@aol.com.
I'd be happy to correspond with those who read my articles.

Bottle Feeding - An Experience in Withdrawal
Jayati Ghosh

People with autism are self-absorbed and aloof. It takes a lot of creativity on the part of the parents to change any behaviours.

My son Tuhin is four-and-a-half years old. We want to share an experience which opened our eyes making us believe that nothing is impossible to teach even an 'autistic child'. Like other children, Tuhin used to drink milk and water only from the feeding bottle. There were many times one of us would get up in the middle of a chilly December or January night to prepare milk for him. As soon as he got the bottle he stopped crying. Though we had to get up in the middle of the night to prepare the feed, we preferred that to the inconvenience caused by his crying. Especially remembering all those sleepless nights when we lay awake thinking how to put an end to the problem.

The situation continued to worsen, till the way was paved for us by Open Door.

An intervention programme guided me. The therapist who was attending Tuhin first suggested what I thought was a rather impractical and challenging method. She told me to increase the length of time between the last evening feed and the next one (midnight). While this practice did not yield any positive results, the next method suggested turned out to be nothing short of a miracle. I was told to cut the tip of the nipple and increase the size of the opening little by little. Each time the enlarged opening of the nipple should be maintained for a few days or so till the child gets habituated, before being cut some more again. The point that makes this a momentous achievement was that this entire process took only a fortnight. In that time, without any fuss the feeding bottle, so essential before, was simply disowned by our cute little son!

For us, as parents, this was a very overwhelming experience which convinced us that proper handling and guidance can find a corrective measure to any kind of challenging behaviour even in the case of an autistic child.

Autism Awareness Concert
Indrani Basu

Dilli Haat 12 February 6:30 p.m.:
The AFA awareness concert was about to start. After days of practice and preparation: display boards up, information tables in several areas, sound, music, mikes, cartons of information material all in place, the time had finally arrived.

And then Pitch Blende took the stage. Their music took visitors to the Haat by surprise making them drift towards the small open air theatre. To this captive audience was shown a short and moving film on Autism followed by a sharing about Autism and AFA. Then it was the turn of the Open Door children to perform, and perform they did. Every child stood facing the audience perfectly aware that it was their big moment. First there were several solo numbers from the senior boys. Then all the children performed together. When they bowed and walked smartly off the stage they left behind a cheering clearly moved audience.

Lady Catherine Young wife of the UK High Commissioner then spoke a few words. After which Sushmit Bose took the stage. It was pure seventies' nostalgia and he had everyone clapping and singing along with him.

Music was not the only attraction of the evening. There were raffles and lucky draws with wonderful prizes to be won which were given away by HE Ms Maria Clara Bentacur the lovely Ambassador of Colombia. By now the Haat was packed in anticipation of Euphoria's performance. The band had almost everyone on their feet in short order. And though the dancing audience clamoured for more, by 10 pm the curtain came down in deference to the people who live in the vicinity of Dilli Haat.

The most heartening thing about the evening was the large numbers who stopped by at our information desks to collect information about autism. Another step in creating awareness about the disorder had been taken. On a more prosaic note the funds collected through the generous donations and the brochure will help AFA continue its work for another year, and take us closer to achieving our dream of setting up a permanent National Centre for Autism, that will enable us to reach out to more families more effectively.

Chennai Workshop
Sandra Dawson

In the past few years our country has become more and more aware of Autism as a disability. Special education in different regions around India have begun to see the need to train themselves and learn about Autism. Recently the Vidya Sagar Institute headed by Mrs Poonam Natarajan in Chennai organised a Professional and a Parent Workshop in February this year. The one-day Professional Workshop was attended primarily by the Vidya Sagar staff and also by the teachers. The parent workshop was held over two days and was attended by parents of the children attending Vidya Sagar, as well as those in other schools.

A lot of focus was placed on helping the families understand Autism and how it affected their children. An entire day was devoted to discussing methods of teaching various skills to the children, comparing notes with and discussing teaching methods presently in use. Participants were especially appreciative of the talk on 'Learning to Accept Your Child' where acceptance, being non-judgmental and happy was shared.

Many said this was very much needed but never talked about. Families began to talk to each other in a more encouraging manner - talking about what their children could do instead of what they could not do; that was especially wonderful to experience. Some of the particularly enthused parents went home and tried to put their learnings to work that very evening, and came back the next day to report encouraging results.

We hope that from this a Parent Support Group and a Unit for Autism by parents will start up. Vidya Sagar has been very supportive and its doing its best, but as more children are diagnosed, Chennai will need another facility that is as open and accepting and willing to train as Vidya Sagar. Hema Sampath, Indrani Basu, both parents, and some of the staff - Giridhar, B V Laxmi and Rema are taking a very active role in this endeavour.

The last day was spent looking around the Centre. We were very impressed by the structure of the system and how much each child is getting by way of time from therapists. We had the opportunity of visiting Madhuram Narayanan Centre as well. We met Beena Prithviraj (whom many of you will know from past workshops in Delhi) over there and discussed with the staff the system and methods they follow at MNC. We also visited the adult vocational workshops at the IIT Chennai, as well as at the earlier location of the Spastic Society.

On the whole, this has been one of the most encouraging workshops we have done. The dedication and commitment shown by the staff of Vidya Sagar is so far unmatched.

We wish the families and professionals in Chennai all the very best and hope that this will just be the first step in intervention facilities for people with autism in the south of India.

Christmas Party
Kumkum Seal

December, a month of celebrations and parties. Like every year, last December, AFA organised a Christmas and year-end party for families of children attending the various Intervention Programs at Open Door. On the 18th of December - the last working day - over fifty children with autism who are on our programmes, their parents, their siblings, and other family members attended the party along with the teachers and volunteers of the Centre.

The room was bright with streamers and colourful cutouts on the walls. The teachers did us proud with a big paper Christmas tree in one corner with gifts piled all around it making the place look gay and festive. As always they succeeded in making the place look like a million bucks at very little expense!

The attraction of the party was lively Christmas carols headed by Sarah and her lovely voice - which prompted everyone to join her. There were party games for the families - 'Dumb Charades' and 'Made For Each Other Couple'. Paper and pens were given to couples and each had to answer a set of questions about their spouse without any consultation. It was quite a hilarious sight when the answers were read aloud and with the spouses shaking their heads hard at the wrong answers.

Anu Bakshi, an enthusiastic friend of AFA, again hosted the party. She brought a smile on everyone's face and lit up all eyes by bringing gifts for all, and also arranging for the eats - mouth watering goodies like cookies of different shapes, samosas, sweets and tea. The incomparable Claire Dutt once again baked a delicious Christmas cake - in the shape of a stocking - for our kids.

After the gifts were distributed with each one's name called out to come and collect them, everyone had the eats and drinks. As all good things come to an end, so did the party - with everyone going back home happily - only to eagerly wait for the next Christmas party.

The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999
Major Gen. (retd.) Ian Cardozo

A Brief Review:
1. The benchmark of good governance is the welfare of it's People, Politics, Economics, National Security and Social Justice. All need to work in harmony to ensure the average citizen has the basic essentials for normal living. More than that, every citizen needs to be assured that he/ she is protected by the society in which he/she lives and that he/ she has equal opportunity to access the means that ensure a just and meaningful life.

2. This is all the more important for persons with disability. Disadvantaged as they are, they need to know not only that they are equal citizens of this great country but also that society will ensure that they can function from an equal playing field when issues of education, employment, welfare, community living, justice and other aspects of daily living are concerned.

3. Society also needs to know that the disabled are equal citizens of this country, that their rights have to be respected and ensured, and that any rule, policy or scheme which infringes the fundamental rights of the disabled are violative of the Indian Constitution and are therefore null and void.

4. Society, however, well meaning it may be, sometimes fails to ensure that the disabled are treated as equal citizens and over a period of time, the disabled have learnt to move from an environment of 'expectation' to an environment of rights.

5. This has resulted in the institution of two Acts promulgated by the Government of India, these are:

a. The Persons with Disabilities (Equal Opportunities, Protection of Rights, and Full Participation) Act, 1995, and

b. The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. (National Trust Act, 1999)

6. Both these Acts seek to make the word more friendly to the disabled. The National Trust Act, 1999 focuses on the provision for a body at the national level for the welfare of persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities and with matters connected with them.

Objectives of the Trust
The objectives of the Trust are:
a. To enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong.

b. To strengthen facilities to provide support to persons with disability to live within their own families.

c. To extend support to registered organisations to provide need-based services during the period of crisis in the family of persons with disability.

d. To deal with problems of persons with disability who do not have family support.

e. To promote measures for the care and protection of persons with disability in the event of death of their parent or guardian.

f. To evolve procedures for the appointment of guardians and trustees for persons with disability requiring such protection.

g. To facilitate the realisation of equal opportunities, protection of rights and full participation of persons with disability.

h. To do any other act which is incidental to the aforesaid objects.

Composition of the Board
The Board shall consist of:
a. A Chairperson to be appointed by the Central Government from amongst persons having expertise and experience in the field of autism, cerebral palsy, mental retardation and multiple disability.

b. Nine persons to be appointed in accordance with such procedure as may be prescribed from amongst the registered organisations out of which three members each shall be from voluntary organisations, association of parents of persons with autism, cerebral palsy, mental retardation and multidisability and from association of persons with disability.

c. Eight persons not below the rank of Joint Secretary to the Government of India nominated by the Government to represent the Ministries or Departments of Social Justice & Empowerment, Women and Child Development, Health & Family Welfare, Finance, Labour, Education, Urban Affairs & Employment and Rural Employment and Poverty Alleviation, Members, ex officio.
d. Three persons to be nominated by the Board representing the Associations of Trade, Commerce and Industry engaged in philanthropic activities.

e. The Chief Executive Officer, who shall be of the rank of Joint Secretary to the Government of India, member-Secretary, ex officio.

f. The Board may associate with itself, in such a manner and for such purposes as may be determined by regulations, any person whose assistance or advice it may desire for carrying out the objects of the Trust.

Powers & Duties of the Board
The Board shall:
a. Receive from the Central Government a one-time contribution of rupees one hundred crores for a corpus, the income of which shall be utilised to provide for adequate standard of living for persons with disability.

b. Receive bequests of movable property from any persons for the benefit of the persons with disability in general and for furtherance of the objectives of the Trust in particular: Provided that it shall be obligatory on the part of the Board to make arrangements for adequate standard of living for the beneficiary named in the bequest, if any, and to utilise the property bequeathed for any other purpose for which the bequest has been made:
Provided further that the Board shall not be under any obligation to utilise the entire amount mentioned in the bequest for the exclusive benefit of the persons with disability named as beneficiary in the bequest.

c. Receive from the Central Government such sums as may be considered necessary in each financial year for providing financial assistance to registered organisations for carrying out any approved programme.

Programmes likely to be approved by the Board
a. Any programme which promotes independent living in the community for persons with disability by:

o Creating a conducive environment in the community;

o Counselling and training of family members of persons with disability;

o Setting up of adult training units, individual and group homes;

b. Any programme which promotes respite care, foster family
care or day care service for persons with disability;

c. Setting up of residential hostels and residential homes for persons with disability;

d. Development of self-help groups of persons with disability to pursue the realisation of their rights;

e. Setting up of local level committee to grant approval for guardianship; and

f. Such other programs which promote the objectives of the Trust.

Note: While earmarking funds for the purposes of clause © of sub-section (2), preference shall be given to women with disability or to persons with severe disability and to senior citizens with disability.

Procedure for Registration
1. Any association of persons with disability, or any association of parents of persons with disability or a voluntary organisation whose main object is promotion of welfare of persons with disability may make an application for registration to the Board.

2. An application for registration shall be made in such form and manner and at such place as the Board may be regulation provide and shall contain such particulars and accompanied with such documents and such fees as may be provided in the regulations.

3. On receipt of application for registration, the Board may make such enquiries as it thinks fit in respect of genuineness of the application and correctness of any particulars thereon.

4. Upon receipt of such application the Board shall either grant registration to the applicant or reject such application for reasons to be recorded in writing.

Local Level Committees
A local level committee shall consist of:
a. An officer of the civil service of the Union or of the State, not below the rank of a District Magistrate or a District Commissioner of District;

b. A representative of a registered organisation; and

c. A person with disability as defined in clause (1) of section 2 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.

The National Trust Act, it is hoped, will attempt to solve the persistent fear in most parents of children with autism, cerebral palsy, mental retardation and multiple disability as to what would happen to their wards once they died. The National Trust Act as we have seen not only addresses the issue of the appointment of guardians but also sets up mechanisms that monitors and ensures their proper functioning particularly with regard to how they deal with properties bequeathed by parents for the welfare of their wards.

The Government of India has made the right start. It is hoped that policies, rules and procedures will soon follow. It will no doubt take a little time however, it is up to us to ensure that the momentum that we started continues in the right direction as otherwise the Act would only remain a piece of paper.

Action for Autism presents: Annual Training Workshop
September 28, 29, 30, & October 1, 2000
Indian Social Institute, Lodi Institutional Area
New Delhi

ACTION FOR AUTISM announces its Autumn 2000 training programme for parents and professionals. The workshop is open to first-time participants as well as to those who would like to refresh their knowledge.

o Areas to be covered will include:
Autism and its diagnostic criteria; sensory defensiveness; teaching communication; managing behaviour problems; self-help skills.

o A demonstration classroom will be set up so participants can see how we structure our teaching.

o Free daycare will be provided during workshop hours for those who find it difficult to leave their children at home:
This must be pre-arranged with Action for Autism well ahead of time.

o Individual consultation for families will be provided on the last day of the workshop. The consultations will be available to those families who make prior bookings - so do book well in advance.

NEW!
Parallel Sessions covering different aspects of the same topics: Basic/ Advanced teaching methods, Diagnosis and assessment/ Autism and your child, Early interventions/ Training the adolescent and young adult.

Registration:
o Rs 500/- per parent attendee (Rs 300/- for members)

o Rs 750/- per non-parent attendee (Rs 500/- for members)

Accommodation
Accommodation can be organised at the ISI for a limited number of attendees on a priority basis. Rooms will be available from noon on 27th September to noon on 2nd October, at Rs 1,500/- per bed (twin sharing) and Rs 3,000/- for a double room, for a five nights stay, with breakfast. Last date for booking accommodation:1 September, 2000.

Note: Only those who have paid the sum of Rs. 500/- for annual membership are eligible for the discounted 'members' rate.

Helpline

Q. Our three year old child is found to be autistic. We already have done an assessment and detailed report will be available after few weeks. The doctor has said it is high functioning autism. Our problem is the child gets everything she wants done from us by means of holding our hand and taking it to the object. She does make eye contact. She has no speech, except that she can utter
many unspecific words. Also she does not take solid food. Thus far we have not received guidance from those we have contacted, except that they all say specific treatment is not available. We make a request to advise us what treatment/ therapy could be adopted and how we could go about it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Letters to the Editor

As an Indian living in the UK, and a parent of a child with autism, I have a deep and personal interest in the development of services in India for persons on the autistic spectrum. I think that AFA has its work cut out- first in getting the government and organisations like the National Institute for Mental Health, Secunderabad - to discard the all-embracing umbrella term MENTAL RETARDATION. Unless they do that, they would not be able to see the STRENGTHS and NEEDS of various and different kinds of mental disabilities , each needing its own specialist approach. Next your wish list - it would be informative on where you are in terms of regular updates in greater detail at least on the major requirements like land, etc. For instance, it would be useful to know the places you are targetting to set up the centre. Good Luck !!

JANAKI PUTCHA
Middlesex UK

We really gained a lot from the AFA workshop' 99 and now feel more sure of ourselves with Kushal. Also the time we spent at Open Door School later is proving very beneficial though due to Kushal's sickness later we were not able to attend as many days as we would have liked to. Time and again your advice of upping the three 'E's - Energy, Enthusiasm, Excitement comes in handy and so also the many practical tips we got. Also some analogies given while explaining the working of an autistic mind remind us daily while working with Kushal to be very patient and understanding. The sample daily schedules which were mentioned also are a great help as the ideas which one gets on reading books sometimes seem too overwhelming.

ALKA & VISHESH MALHOTRA
Muscat

I had attended your parent training workshop at Mumbai in 1997, held at Bandra. First of all let me thank you for the awareness you created about autism. My husband and I are extremely grateful to AFA.

We are in a better position to understand and communicate with our son Rohan who is 5 years old. Also we were greatly touched by the article , 'Don't Mourn for Us' by Jim Sinclair. There is so much truth about what he feels. It is very encouraging and reassuring to read such material.

SWATI PUTHLI
Mumbai

I get a lot out of your journal. Congratulations to the wonderful team for getting Autism Network and AFA started up and running so well. It is a real boon to so many families.

INDEERA CHAND
Delhi

My very special greetings to everyone at AFA and Open Door.

Thanks for the love, care and dedication. Thanks for the most enjoyable evening of music. The most outstanding thing in the whole concert was the joyful singing of your children. It was so heartening to see them on the stage and perform with such gusto. Kudos to the teachers! Teja sat through most of the concert very calmly and clapped appropriately.

My family and friends congratulate you all for the awareness, enlightenment, and message of love.

May your tribe grow and enrich our lives.

Vimal