Page One | Parent Training Workshop:  A Review | The Workshop: A Parental Perspective | Welcome to Holland | On Teaching | Slow and Gradual Development But a Certain and Sure Development | How to Talk to an Autistic Child | Travels with my Child | Helpline | Letters to the Editor

N E T W O R K

December 1996 Vol. III, No. 3

Page One

We trust all our readers had a festive and happy Dushehra and Diwali. It has been a very exciting period for Action For Autism. Our work is, of course always exciting and fulfilling. Added to it was the Parent Training Workshop sandwiched between Dusherea and Diwali breaks.  This was not the first workshop conducted by us. So how was it different from the others?  On two counts: being a small organisation that tries to keep its administrative expenses down to a minimum, earlier workshops conducted by us were organised by other organisations.

The Parent Training Workshop was the first completely organised, conducted and executed by us. This was made possible by a generous grant from the Ministry of Human Resource Development, Department of Women and Child. It enabled us to focus on holding a very professional and well-managed workshop. Our Thanks for this to Mrs K R Chibber of the Ministry for her help and guidance, and to Dr. Gopalan for her interest that eventually enabled us to obtain the grant.

The other aspect that distinguished the workshop was that the focus was completely on parents and carers in the home. Training workshops such as this are mostly tailored keeping in mind professionals alone.  Parents and families have certain specific needs that rarely get addressed. Since the workshop was conceived following persistent requests from parents, it was decided to keep the focus firmly on the family and its needs. This proved to be a happy decision, providing as it did an opportunity for parents to share and sustain. In fact, a request for future workshops is to keep aside more time for parents to talk about and share their experiences more extensively.  However, once the dates for the workshop were finalised professionals too wanted to register. We would  like to take this opportunity  to apologise to them for not having been able to accommodate  them in this workshop. We hope however to be able to hold one for professionals in the near future.

Following on the conclusion of the workshop, a largish delegation from Action for Autism, had a very fruitful meeting with Mr K K Bakshi, Secretary Ministry Of Welfare, and are truly thankful to him for his support. Earlier Mr Bakshi had made time in his very busy schedule to inaugurate the workshop. We are hopeful of being able to bring to the notice of the state, the situation faced by individuals with autism and their families, with further positive fallouts thereof.  We wish you all a joyous Christmas and A New Year full of peace and promise.

Parent Training Workshop: A Review
Sandra Dawson

Parents and carers of autistic people in India have for a long time now been seeking help from wherever they have been able, in the hope of finding a way to help their autistic child and friend understand, and cope with their very complex world.  Action for Autism, recognising this urgent need, organised a three-day Parent Training Workshop.  It was held at the Indian Social Institute from the 25th to the 27th of October 1996 and was conducted by Open Door.  Attendance was limited to 50 and comprised participants from all parts of the country, and Bangladesh.  The Secretary of the Ministry of Welfare, Mr K.K.Bakshi kindly consented to spare us time to inaugurate this effort.

The workshop was designed to equip parents and carers of autistic individuals by helping them firstly, to very clearly understand what autism is all about, and then giving them the methods and ways of teaching, as well as moulding behaviour patterns.

The first session, 'What is Autism' dealt with the clinical aspects of the disability i.e. the possible causes, occurrence, characteristic features, levels of severity, differences in affect, etc.  Later sessions explored further the ways that autism effects an individual.  These were covered broadly under the topics of Sensory Defensiveness, Communication and Social Skills.  One of the introductory sessions had participants come together in small groups, each with a facilitator who guided them through a number of Awareness Exercises.  The idea was to give the participants a feel of what it might be like to be autistic!

Persons with autism are affected either by an overstimulation or understimulation of one or more of the senses, causing them to behave in certain ways.  These behaviours are ways that enable them to best cope with their impairment.  Understanding sensory defensiveness helps people living and working with an autistic person accept them, and also helps provide them with appropriate coping strategies.

Many autistic people are verbal, but perhaps an equal number are non-verbal.  Communication dealt with how one can help to build vocabulary and communication skills, both verbal and gestural.  The use of other methods, such as communication cards, communication boards, etc. was also explained.

Though it may appear otherwise, autistic people can learn to interact and join in our world, but because of their sensory, communication and other deficits, oftentimes their attempts at socialising are inappropriate.  Ways of increasing and encouraging interaction and teaching appropriate social skills were discussed.

Inappropriate behaviour often turns into challenging behaviour because of inconsistent and inappropriate methods at stopping them.  The session on Challenging Behaviour detailed with clarity both why and how challenging behaviour starts and later escalates; and how to both nip it in the bud and also how to deal with full-blown situations.

Teaching Methods focused on detailed explanations on, firstly, how to set up any teaching situation; and then how to teach specific concepts like colours, numbers, reading and writing.  Attendees appreciated the fact that the whole approach had to be different from what was effective with other special children.

An exceptional inclusion in the programme was a discussion on Learning To Accept Your Child.  None but the parent concerned can really appreciate the sense of devastation that follows on the discovery that one's child is disabled.  What they need then is to be helped to also see things from their child's point of view as much as to see the situation in its proper perspective, so they can understand clearly what is best both for their child and them.'  Of course, this cannot be effected overnight, but a start can be made.

What we do believe is that families need neither the censure of being 'bad' families who cannot accept their child, nor the pity of 'Oh you poor parent I know how tragic it is'.  Instead they want to see why a particular attitude is more effective.  The session on Learning To Accept Your Child was introduced to this end.  The importance of being totally accepting of the autistic person and seeing them as people before seeing their autism, was emphasized.  Most of the parents were pleasantly surprised because this was the first time that this emotional aspect was addressed as part of a training programme.  It further gave many of the parents an opportunity to, be open and talk about their feelings with others attending and identify with challenges and successes.

On all three days, the sessions and talks were interspersed with audio-visual aids.  A big effort had been made to shoot as much footage as possible, on as many topics as possible, especially Teaching Methods, Challenging Behaviour, Methods of Teaching Communication and Social Skills, etc.  Slides were also used as required.  These were greatly appreciated, because as parents later said, it made everything very clear when they saw teachers actually working with the children tackling different aspects, both academics as well as socialisinc,, behaviour and communication skills.

Discussing Vocational Training and Sexual Matters helped put parents at ease about these concerns.  Every afternoon an hour was also devoted to answering questions and queries about things that worried them, and also about the sessions themselves.

Though Action for Autism has conducted other workshops before, this was the first major workshop independently planned and organised by us.  We have, of course, learned a lot from it too.  In order to get an honest feedback, a questionnaire was circulated to attendees which they were invited to complete and submit unsigned, so that we can get a clear picture of their reactions.

The responses were very encouraging.  We learned for instance, that the largest number of participants found the session on Teaching Methods most useful.  Very encouragingly, the session on Learning To Accept Your Child appeared to have been appreciated as much as the ones on Vocational, Independence Training and Self-Care and Challenging Behaviour.  The Awareness exercises appeared to have had a sensitizing effect, as had been the intention.

The need for more time and focus on subjects like Challenging Behaviour and Teaching Methods was felt quite strongly.  Such detailed sessions would probably require a five-day workshop instead of just three.  Initially, it was felt that it would be either inconvenient or difficult for people to put aside so much time to attend a workshop, but feedback suggests that parents would be quite willing to attend for that long.  Most felt it would definitely be worth it.

An effort had been made at the workshop to cover as many areas of concern as possible.  However, a number of attendees felt it was too much to absorb in three days, and they were suffering from an 'information overload'.  This, too, was the reason for the request for future five-day workshops.  Another request was to keep more than just an hour per day for answering questions; as well as slotting more time for parents to share and compare notes.  Judging from attendee responses it would appear that most felt that they were returning with far more than they had expected to; but we hope next time to incorporate the suggested changes.  We would also like to thank our participants for being so wonderfully open and interactive.

The workshop, we are very encouraged to say, was a success and we look forward to doing more of such programmes.  We hope that we can build a community that will be a support to the autistic people among us.

The Workshop: A Parental Perspective
Indu Chaswal, New Delhi

It was about four months back when I first came in contact with ‘Action for Autism’. When I was told that my daughter Vrinda is also autistic, like my son Mukoo, I was frightened at the prospect of spending a lifetime looking after the two of them. But very soon this organisation helped me, and today I am trying to lead a life full of determination, faith and toil. From the 25th of Oct to the 27th of October this year, I attended the Action for Autism Parents Training Workshop held at India Social Institute, New Delhi. It was conducted by the staff of Open Door School and some representatives of the organisation.  It has been an incredible achievement of AFA that parents from all over India, and even abroad attended the workshop wholeheartedly. It was further encouraging to see grandmothers, sisters and even aunts attending the workshop to gather accurate and right information and guidance for their near ones condition.  It may not be possible for me to give every detail of the inexhaustible training, and information given during those three days, but I shall try to share the maximum possible by me.

The first day’s programme included inauguration of the workshop by Mr. K.K. Bakshi (Secretary of Welfare
Ministry) and introduction of the participants followed by sessions on ‘What is Autism’ and ‘Communication’. In fact the parents were so full of questions that they kept on interrupting the first session. But the workshop was very well planned, and the questions were answered but only at the relevant junctures. By the end of the first day the parents were convinced that they were in a workshop that would not send them back with any doubts left.  The programmes for the following two days were divided on specific topics like ‘Acceptance’, ‘Challenging Behaviours’, ‘Sensory Defensiveness’, ‘Teaching Skills’ and ‘Sexual Concerns’. In between these sessions there were informal breaks which gave the parents an excellent opportunity of sharing concerns, building a support system, and discussing ways of coping with pressures of caring and managing. I am sure that by the end of the workshop, the parents had added a few more names in their list of well wishers and friends.

I want to write about some of the sessions briefly. The one on ‘Sensory Defensiveness’ provided an answer to many questions that were lingering in the minds of parents regarding odd behaviours (phobias and tantrums). It explained how distortions in hearing, seeing, touch and taste led to extremes of hyper or hypo sensitiveness.

In the ‘Teaching Skills’ session really elaborate explanations were given about the methods used for different types of autistic persons. Jigs, Visual and Verbal aids were recommended. Video clippings of the students at Open Door at work, with their teachers were shown in proper relevance. These explained how the various methods that were being discussed at the workshop were practically carried out in school.  Difficult issues like matters of sexual concerns were dealt with very clearly and clinically. Parents were encouraged to speak honestly about any special experience. It was an enriching experience to hear from them how they moulded their own selves to accept their autistic child or how they tackled challenging behaviours. A few parents gave a very interesting touch to the workshop by narrating incidents full of light humour and wits from their kids’ side.

It was indeed a very informative and a practical workshop, where no false hopes, no false promises were made. The main focus was on educating and training the participants, on ‘Autism’ and enabling them to nurture their kids in a proper way.  After three days of interesting discussions and activities, the workshop concluded with each and every person fully satisfied. For this sincere effort, that was a new venture by the Action for Autism, I am thankful to all those who contributed towards making it a success. For those who could not be present, at the workshop, I wish to write down a few points that I have learnt from it. These can change our values and thinking to a great extent.

1.  Please educate yourselves about the disorder and become an advocate for your child.
2.  Try to see the world from your child’s perspective.
3.  In dealing with his difficult behaviours IGNORE undesirable behaviour and PRAISE the desirable ones. Be very cool while ignoring and very expressive in praising.
4.  In teaching him a skill be very clear about his abilities. Be very enthusiastic and energetic while teaching abstract things .
5.  Join his autistic world and he will join in your world.
6.  Do not sit and fret or cry over the situation. It will be very damaging for your child and you. Instead get
into ‘action’ and help him.
7.  Learn to respect his very private needs and do not get upset about them. If you respect him, others will.
8.  The world has many nice people and with a little effort you can find them. Your child can also find a normal playmate or a friendly and an understanding shopkeeper in his neighbourhood.
9.  It is better to handle a challenging behaviour today, rather than bear it and then continue bearing it for the years to come. It will lead to frustration and will be damaging to your temperament.
 

Welcome to Holland
Emily Pearl Kingsley
Reprinted from the Autism B.C. Newsletter, Vol. 3, No. 6

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It is like this...

When you're going to have a baby, it's like planning a fabulous vacation trip, to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland".

"HOLLAND?!” you say. "What do you mean Holland?  I signed up for Italy.  All my life I've dreamt of going to Italy.”

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.  The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never ever, ever go away, because the loss of that dream is a significant loss.  But if you spend your life mouming the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

On Teaching

Barring a handful, children with autism in India lack the oppurtunity for appropriate schooling. However, whatever schooling most receive, those few hours spent at school provides respite to mothers coping with often challenging situations, while dealing with a host of other demanding situations, such as caring for other offspring, demands of a joint family, household chores, perhaps a demanding career, amongst others.

Acknowledging that it will be many years before all children with autism have access to appropraiate schooling, the best option is that parents be empowered to help their child; to optimise the time they can spend with their child. In fact, in the midst of a demanding life, a common query of most mothers is, How can I help my child?

However a concern voiced by many families is how to go about teaching a child table- top activities. Even though many of the children are ready to start learning, parents are sometimes insure, quite how to go about teaching their child basic concepts. Within the constraints of limited space available, we will try to address this concern. This area was covered in some detail at the recently concluded Parent Training Workshop.

Once a child has learnt to sit on request for three to four minutes, and focus without indulging in self- stimulation, then keeping in mind a few basic concepts, one can begin to teach simple table top activities:  It is important to remember that most autistic children are not able to learn through imitation, the way other children do. Even simple actions that an infant imitates with ease, such as waving bye bye, a child with autism might have to be taught hand on hand. This may have no relation to the child’s overall gross motor skills. A child may be an excellent climber, or juggler, with a fine sense unable of balance, yet totally unable to wave bye bye or even clap in imitation. It is important for the child to be able to imitate in order to learn; so teaching the child to imitate will have to go with teaching other skills.

Children with autism are particularly good at matching and sorting activities. We find it very useful teaching them using such methods.  Most of us learn better, reatin better, when a concept is made visually clear. Autistic children too are visual learners, much more so than the average person.  Consistency in anything we teach is paramount, be it in the manner in which we present activities or in the words we use.  Sit opposite your child when you work with him in order to encourage and help him to look at you. Sitting at a slightly lower level is an even better idea.  Be a mirror image of your child, when you are working with him. Autistic children are not able to transfer left and right as readily as other children. If you are facing your child, and saying  ‘Raise left arm’, raise your right arm, in order to encourage him to raise his left, because your right arm will be to his left.

These are just a few suggestions. Many more will occur to you as you go along. For purposes of clarity, let Rohan be the name of the child in the following paragraphs.

Once Rohan has learnt to sit and focus for a few minutes, you can start teaching him to imitate. You could perhaps start by teaching him to touch his nose. You can do this by working alone or with a faclilitator. Sit opposite and say, ‘Do This’ and touch your own nose. The facilitator sitting behind Rohan, will then take his hand, and guide it to his nose. Praise at once with a ‘good touching’ or a bite of food or both, depending on what level of reward is most effective for your child at that time. Keep repeating the instruction, the prompt and the reward. With every repeat make your prompts fainter and fainter.  Are working alone with Rohan, then say ‘ do this’, point to your nose, reach out and guide your child’s hand to his nose, and then reward. Again remember to fade out the prompt as you progress.

Once he can touch his nose in imitation without a prompt, it is time to move on to the next action. If you have taught touching nose as the first action, then maybe you do not want to teach touching his head the next, as that is a rather similar action and may be confusing. The second action to be taught, has to be something, very different from the first, such as raising hands for instance. Repeat the same process as for touching nose. Say ‘do this’ and raise your own arms. Next reach across and help Rohan’s arms up and reward him at once. Repeat the process a number of times, fading your prompt as he begins to get the idea. If you have someone to help, then too the process has to be the same as for touching the nose.

Over days as this action too is mastered, the next step would be to have Rohan imitate both the actions by random turns. Other actions to teach a child to imitate would be to clap hands, touch head, wave bye-bye, kiss, touch ears, stamp feet, put out tongue, jump, and other very basic actions.

Put In.
As a prelude to teaching a child matching activities, one can teach the child simple put in activities, as well. This is really a part of learning to imitate and can be helpful in teaching a child matching, shape-sorting and such other activities.

Present Rohan with a number of mall identical objects in a tray, and a small jar. Take one of the objects in your hand, say ‘Put in’ and drop it into the jar. Then guide Rohan into picking up one of the objects say ‘Put in’ and help him to drop it into the jar. Reward at once. Repeat with all the objects. Over a period of time help your child to comply with this request using variations of objects and containers. He will then learn to generalise the skill.  You could introduce small plastic balls, large wooden beads or marbles which the child can learn to put into a small circular hole cut into a container lid.  Another possibility is wooden discs or flat counters to be put into a slot.  This can lead to shape discrimination activities.

Matching, Sorting
When a child learns to match, the skill can be used to teach the child colour discrimination, size, use and also to read. Matching has to start with objects, then pictures, and finally to matching objects to their pictorial representation.

Start with two identical balls, two spoons, two glasses, or any other objects that are exactly alike. Place one on a table. Preferably, use a tray to place the object on the table. Anything that can mark out the area, where the object is kept clearly and visually will do, a discarded mithai box cover or even just a square sheet of paper. Place one of the of objects on the paper, hold out the other, and tell Rohan ‘Match’. Guide his hand into following your request, and reward on every completion. Ensure that Rohan looks while doing the match, because he may get into the habit of simply placing the object anywhere on the table, without actually looking where he is placing it. Ensure that he places the pair on the tray or white paper, next to the first one.

Once he has mastered the skill move on to teaching him to match a second identical set of objects. Make sure, however that the second pair is markedly different from the first  pair, that he has learnt to match.  Do not for instance, introduce a fork right after having started with a spoon.  Instead perhaps introduce a glass.

Once he has learned to match the glass, to its pair on the table, slowly reintroduce the first i.e the spoon, on another square of paper alongside the glass. Continue offering the glass, till he consistently places it on the white paper, holding its pair on the table. When he is able to respond without a mistake, then offer him the glass and the spoon individually. Make the presentation random; present the spoon two times, the glass once, the spoon once, the glass three times, and so on. Next randomly, switch the position of the glass and the spoon on the table as you get the child to match the pairs.

Rohan will now be ready to be introduced to a new object. Remove one of the objects from the table, and introduce another in its place. For instance, replace the spoon with a fork, and go through all the steps, using the fork and the glass till Rohan is able to respond correctly. Then reintroduce the spoon, and go through all the steps using all three objects. Once Rohan is able to match a number of objects correctly, you can move on to teaching him to match pictures.

Matching Pictures
In teaching Rohan to match pictures it is sometimes more effective to start with photographic representations, rather than drawings of the object. The photographs have to be taken against an identical background, so that other extraneous details do not distract, confuse or even cue the child. Photographs of objects he has learnt to match would be particularly effective. The method to be followed has to be the same as for matching objects that is using a pair of identical pictures to teach the child to match.

Matching Objects to Pictures.
Here you will require a number of sets of objects and their pictures. Rohan will have to learn to match an object to its picture. The procedure followed will have to be the same as before.

The advantage of teaching a child to match is that it is something that most autistic children are good at. Hence, they start enjoying the activity after a bit. Besides the programme can be tailored to the child’s needs. It can be extended to teach a child to match an object to a word, match number shapes, match a number to the correct number of objects. The matching programme  can be made more and more sophisticated leading to sorting activities. Your child can learn to sort, say beads, buttons and batteries: different kinds of batteries together, all different kinds of buttons together and so on. Or sort according to colour, size, use, weight and so on.
 

Slow and Gradual Development But a Certain and Sure Development
Seema Bhatia
New Delhi

My son Aakash, now four years old, initially seemed like any other normal kid.  Suddenly, at the age of two years, we fell that he was not behaving and responding the way he was expected to.  He was a little different from others.  I cannot say categorically that he was non-verbal, because at times he would say, ‘papa,’ ‘mama’ in a subdued, tongue-twisty style and some other little non-meaningful words, with incomprehensible gestures.  But we were not worried.

In the course of time it became apparent that he was not in our world, he was lost in his own little world.  He appeared to have no expressions.  He was indifferent to what any other normal child would have felt excited about.  At times he was aggressive and he would simply throw himself on the floor.

Anyway, at the age of three years, Aakash started going to Merry Barua's 'Open Door.'  Initially we never felt any changes in him.  He was not interested in any kind of activity for which abundant openings were thrown open.  But slowly and gradually, curriculum and teaching started showing positive and meaningful results.  From being dull and bored he graduated to a smiling child.

Earlier I always had tears in my eyes about the hitherto unheard of disability.  I had frustration, and a complex about having a different child.  I used to curse myself for having such a kid.  I always thought that I have been punished for some of my past sins.  Whenever I used to visit my mother, we used to cry for hours together.  But after I attended a Parent Training Workshop in October '96, my visualisation has altogether changed.  It has transformed my approach.  In a nutshell, it has worked wonders for me.  I have started accepting my child in whatever way he is, without conditions.  I have stopped bothering about others, as to what they think about my child, because I now know that if I earnestly change my outlook and viewpoint, then only can my child improve.  To me, my child is now my first priority.
 

How to Talk to an Autistic Child
Shikha Singh

Turntaking, initiation of actions, play interactions, ability to ask for help, comfort with proximity to others, appreciation of co-operative actions, and various others - are the very skills the child with autism lacks.  Their behaviour has a communicative function and the challenge lies in searching for the message being conveyed.  The following guidelines are based on those followed by the various schools of Australia:

1. Follow the child's lead and gain his/her attention by approaching rather than speaking first.  Say the name of the child and then proceed to do whatever you have in mind for the child.

2. Clear, short, simple and specific vocabulary, eg., “get your bag.  Go to the door.  Wait for the bus,” rather than using more words and sentences.

3. Allow time for the child to process the information and carry out the directions.  Do not bombard him/her by repetitive directions.

4. Do not repeat commands over and over.  Instead, repeat clearly and physically prompt the child to perform the task.  Even your facial expression and tone can be used to explain to the child.

5. The use of gestures and signing is important to help the child to understand.  Make use of labels, photographs, and cards.

6. Be consistent in your use of words and cues when teaching functional understanding, i.e., simple behavioural commands such as come, sit, wait, walk with me.  Pair his/her name to these commands consistently.  These help to assist an early understanding and recognising what is being said.

7. Use “build ups” and “break downs” to keep the child learning about language structure, eg:  “shoe” - “shoe on” - “put shoe on” and build down:  “take your sppon and eat rice” – “take spoon” – “spoon” (and point) – “eat rice.”  The child needs to understand and act on the instructions for learning to occur.

8. Reinforcers should be naturally linked to the event.  For example, the child is directed to bring shoes can be responded with, “yes, your shoes.”  Here gestures and intonation will assist in giving the child the message that she/he has been successful.

9. Avoid indirect requests which are ambiguous.  Say, “Take the pencil out of your mouth,” rather than, “we don’t put things in our mouth.”

10. Tell the child directly instead of what not to do, for example, say “walk slowly” instead of “don’t run.”

11. Use personal names instead of pronouns if the child is having difficulty understanding.

12.  Avoid constant questioning.  Use a balance of questions, statements, directions and comments.

13.  Ask questions which are direct rather than open ended. eg.  "what did you buy at the market?", instead of "what did you do today?"

14.  Use extra cues when appropriate, e.g. written outlines, demonstrations, pictures of the event, etc.

You are the best judge of your child's level of understanding, and the appropriate child's level of comprehension.  So try and increase the child's desire and success in attending to the spoken word, and response to spoken language.  Our aim should not be to make the child understand several words, but how his\her understanding of the language of their world helps them to learn, develop more skills and increase more appropriate behaviour.

Travels With My Child
Indu Chaswal

Life for me is a new challenge every day. I am the mother of not just one but two autistic children- Mikoo and Vrinda. Mikoo is my thirteen year old son who has autism with severe mental retardation. Vrinda, my autistic daughter, is five and a half. I have often faced difficult situations with the two of them, and some of these have left their scars behind. While thinking of such painful experiences, I wish to write about one of my latest experiences— a train journey with Vrinda.

Traveling with Mikoo and Vrinda has always been a tough task. We have to work upon it like preparing a project. We have to sit with the Railway Time, select a train that has a First class, ensure a night journey and make it a point to confirm whether a concession is available for that particular train. A few months back when I was staying in Jammu I had to visit Chandigarh with Vrinda. It was an unavoidable trip. Unfortunately there is no train between the two cities that can provide a first class. So I was left with no option but to travel in ordinary second class with Vrinda for seven hours!

Being an autistic child she appears quite normal and so, when she entered the compartment giggling in delight, people must have thought that she was a cheerful kid. But I’m sure very soon they must have regretted sitting in that particular compartment. Vrinda is not aware of social norms that a child of her age is expected to know. In simple words, because of autism, Vrinda does not know ‘how’ to behave ‘where’ and ‘when.’

At first she started jumping up and down from her seat and then she started pulling the hair of a gentleman sitting next to us. (Pulling hair is her way of showing affection). Within minutes she was sitting on his shoulders. I brought her down by taking out her favourite Mint Pops that I had carried along. I kept her sitting in her seat giving her potato chips, crayons, magazines and all such things that she liked. But these things could not hold her for too long. Vrinda had so many new things around her: suitcases, hand bags, water containers, flasks, and she was busy exploring everything. The compartment turned quite messy within the first hour of the journey. She had poured water, had torn newspapers that people were reading and had thrown toffee wrappers all around.

There was an Army soldier traveling in our compartment and he was very considerate. He helped me by trying to divert Vrinda’s attention here and there, but Vrinda, being autistic, is more interested in things than people and so she kept escaping from my hold and was busy doing things like unzipping air bags and fiddling with the electrical switches.

I kept taking her to the toilet but the jerks and the sound of the moving train and the strange look of the toilet horrified her. She returned back crying every time and finally she was upset and uncomfortable. I crossed my fingers praying that she should not get into one of her temper fits or tantrums. But it was inevitable. She started crying and leaping out of my lap shouting, "Vrinda wants! Vrinda no! Vrinda sleep!--" The worst came when she threw a pair of shoes (not belonging to us) out of the window. I felt very helpless. People around me were staring in confusion. They surely must have been thinking that Vrinda was a spoiled brat and her mother was not doing anything while she misbehaved. But I knew that my little daughter was not doing all of this intentionally or because she was spoiled. I also realized that the other passengers were justified in expressing their displeasure. I heaved a sigh of relief when we reached our destination. My husband had come to receive us. After the usual hugging, kissing and greetings he asked me, "How was the journey?"

"Comfortable," I replied, giving him a smile that explained it all. After all, we are parents and such painful experiences bring us still closer to our children.

On my return I hired a taxi from Chandigarh to Delhi and then from Delhi to Jammu we took a flight. It was a journey of just one hour fifteen minutes. In the privacy of our seats, I managed Vrinda rather easily and there was no sense of guilt putting anybody else in problem. But, in order to avoid the trauma, I had to spend nearly five thousand rupees, which was twenty five times more than the train fair. Believe me, it was a ratio that I cannot afford easily.

I wish the Railway Authorities and also the airways could show concern towards many parents like me who have to cut down expenses so that they can manage a comfortable journey with their autistic children. Many of them have children who are more severely autistic (like my son Mikoo). I therefore feel that particularly the airways should give a deep thought to this problem and help Autistic people and parents of Autistic children to travel in the shortest possible time by availing the maximum possible concession from them.

Helpline

Q. My son is eight and has been diagnosed autistic.  Should I give him Vitamin B6 and DMG?  They are strongly recommended by Dr. Bernard Rimland.

A.  Vitamin B6, often packaged as Super Nu Thera, and DMG are food supplements.  They have not been found to have any negative side effects, in contrast with drugs.  In the various studies conducted, reports of which are carried in the Autism Research Review International by Dr. Bernard Rimland, both preparations seem to give very encouraging results.  The ARRI frequently carries letters from very satisfied parents.  Over the last few years, many families in Indi, too, have been obtaining the preparations from overseas and giving it their autistic children.  Some have been formulating it here on the basis of Dr. Rimland's suggestions.

Feedback suggests that for some reason none of our children appear to derive any particular benefits from the formulations.  Given that so many children in the US appear to show quite remarkable changes after the administration of DMG and Super Nu Thera, it is surprising that our children appear not to gain at all.  However, we have a theory that might explain why.  Children in developed countries consume food that is polished, refined and highly processed; healthy food but deprived of many essential nutrients because of heavy processing.  On the other hand, we eat food that is less processed, thereby retaining much of its natural goodness.  For instance, so many fresh fruits and vegetables and home cooked foods.  Few of us eat food out of tins.

If we were to make a guess, we'd say that for Western children, Super Nu Thera and DMG help replenish whatever is lost in the processing, whereas Indian children get the vitamins provided by these products in their normal diet.  We invite our readers to share their ideas on the matter.  Also, if anyone has been giving DMG or Super Nu Thera to their child with a positive feect, do write and let us know.  But ultimately, if you want to give the supplements to your child, the decision rests with you.

Q.  We have set up a daily routine for our son.  We want a few suggestions on how to structure the day for an autistic child.

A.  It is wonderful that you have set up a daily plan for your son and are trying to implement it to the fullest.  Children with autism require structure in order to give them a feeling of control and sureness.  They enjoy structure in their environment.  At the same time, to help their rigidity and compulsive need for sameness, it is good to have variations within the routine.

Try to have a routine for the basic daily activities.  Have regular times for meals, bath and bedtime.  As your son goes to school in the mornings, set aside a few hours in the afternoon when you are free from household chores to be with him.

As you are just beginning to set up a schedule of activities with him at home, you do not want to view that time with him as "time to work."  Start with having fun--play tickling games, sing and clap-- basically whatever will get him to enjoy sitting with you for a few minutes when you want him to.  As you slowly find your time with him increasing, structure that period with a mix of the quiet and the active.  Follow a period of sitting down with a period of jumping activities and so on.

It will not be possible for you to keep your son occupied all day, but you could try and involve him in household chores.  For example, you might have a time when you collect your washing after it's dried.  You could say, "collect washing."  Take along a basket/clean bucket and help him remove the washing from the line and place it in the bucket.  Simplify the process to accomodate his attention and ability:  use methods learnt at the workshop!  So then you have a "time to collect the washing."

An important part of the child's routine is bed-time.  Most children with autism appear to have irregular bedtimes and erratic sleep patterns.  Whether your son falls asleep or not, or even remains in bed or not, prepare him for bed at a regular time each day.  You could give him a nice warm bath before dinner.  After he's eaten he can change and be put to bed.  Read a little to him every night.  It does not matter whether he appears to listen or not.  Read anyway!

Your son could be helped to adjust to a routine easier if you could provide him with visual cues to his daily schedule.  You could have cards for each activity.  Simple line drawings will do.  Howvever, if drawings do not make sense to him you could use photographs of actual situations to help him understands what happens next.  For instance, an actual photograph of him in the bath can be used for 'bath-time,' dried clothes in a basket for 'collect-washing time' and so on.  A further advantage of using schedules is that if for any reason an activity has to be suddenly omitted one day, he can be shown that it is not on the schedule.  This is quite an effective was of taking care of any possible distress over change in routine.

A final suggestion and something that is possibly already being done:  ideally, both parents share in the activities with the child.  Mother can help him with lunch, father with dinner for instance.  The variation will be good for him.

Letters to the Editor

My son is doing division sums exceedingly well.  He can do over 40 sums including two digit and four digit multiplication, for example: 4343 x 45; four and five digit division, for example: 4567/9; ascending and descending order of numbers, subtraction and addition, in approximately eight minutes.  This was of course a source of surprise and amazement among our family members, but apparently he is able to solve these sums at super speed.  I am very happy with his progress and am going to start teaching him decimals, fractions, and simple step sums.

He can read, write and understand many English words now.  His speech, however, is not clear.  If he understands what we say, he replies instantly.  He repeats what we say only when he doesn't understand it.  He can tell the day of the week for any date in 1995, 1996 and 1997, if we tell him the month, date and year.  I think he has learnt by heart every date after seeing the calendar.  Within towo or three seconds he can tell the day accurately.

Meanwhile I am continuing to teach him, hoping to bring out the best of his abilities.  He can play simple memory games, and even plays a video game called "Duck-shoot", where he shoots the duck on the screen rather accurately with the joystick gun.  He is not interested in ball and bat or any kind of outdoor games.

When we go out, I just "program"him that-- 'We have to go by 6:30 p.m.  You should sit.  Don't make noise.  Don't laugh (unnecessarily, that is).  We will come back at 7:00 p.m.'  Programming him in this mattter makes him quiet and calm till 7 p.m.  He only becomes restless if we are delayed.

R. Subramanian
Mumbai

Georgianna Stehli Thomas, whose mother Annabel Stehli wrote the book about her daughter's recovery from autism "the Sound of a Miracle" and "Dancing in the Rain," will be accompanying me to India in Jamuary 1997.  I will do my next Auditory Integration Training in Madras, and possibly in Delhi, in January 1997.  Georgianna is coming to tour India.  We will conduct one or two sessions of AIT and do a lot of sightseeing.  She will be able to conduct parents' workshop for a fee to may towards her trip.

Saroj Madan, M.S.
Enhanced Auditory Retraining Service
Lowell, MA  USA

I want to put my thoughts down on paper and share my feelings on the three exciting days of the Workshop. I must congratulate everyone who made this event happen so smoothly and in such an organised manner.  It was apparent that a lot of hard work had gone on behind the scenes.  Almost every little detail was taken care of, which put everyone into a relaxed mood.  It was comforting to know that we were not alone-- that we had found one another across all the confusions and misnomers connected with autism.  That we now have a forum to address our concerns.  And what is so delightful and important is that we have HOPE for a bright future for our children since the presentation of the Memorandum to the Social Welfare Ministry.  This is a great breakthrough and a celebration.  Full credit to the Action for Autism Team for the spade work and all the hours of hard effort and perseverance undoubtedly put in to make this meeting eventually take place.

I close by wishing the team all success in compiling another memorandum, classifying Autism in a scientific, medico-legal manner.

Delma Dharni
Calcutta

I wish to congratulate and thank the Open Door team and all others who worked for the Parent Training Workshop.  It was very helpful and successful for the parents.  Each and every session was informative.  I especially want to mention that the one on 'Sensory Defensiveness' helped Ashwini and me a lot in understanding Vrinda, our daughter, better.  We are already looking forward to the next workshop!

Indu Chaswal
New Delhi

We are thankful to AFA for all the arrangements made for our comfortable stay at New Delhi.  The Parent Training Workshop is expected to be highly beneficial for us in future.  We have already started following some of the guidelines received in the PTW and getting results.  We have also made out a Daily Plan for our child and are trying to stick to it throughout the day.  We would like to attend such a workshop in the future also to enhance our understanding about autism and to remain in touch.

Sukanti & Runu Bhattacharya
Calcutta

My belated Diwali greetings.  Let me congratulate you on your grand success of the "workshop."  Thank you so much for updating us about autism and its management.  The workshop was really very educative, interesting and splendid!  Besides, I do appreciate your courage and non-judgemental attitude.  May God help you in every step for the great cause.  I cannot describe how contented I feel after attending this workshop.  Like many others, it has changed my attitude of life, too.  Meeting all the parents and knowing and understanding each other is great.  I always had looked forward to such an opportunity.  It's late but better late than never.

I was specially interested to visit Open Door, but due to a tight schedule during my Delhi stay, I could not.  Working with autistic children is itself a big challenge, but teaching my daughter Sanchari with her additional handicap of deafness, is still harder.  Frustrations and disappointments often overwhelm me.  But now, when I look back, I feel that all my efforts did not really go down the drain.  Had I got a right mentor and good schooling facilities, I could have made my daughter a happier person.  Younger parents of India are luckier today.  You have sparked new hope.  I once again thank AFA and all the parents who graced the workshop by their presence.

B. Bhattacharya
Kanpur

To simply state that the just concluded parent workshop has been of immense value both in psychological and in terms of making the mental adjustment for parents would be a gross understatement.  The feedback I have received from my wife who alone happened to attend the above has been much more than encouraging.  I sincerely request that more such conventions should be arranged on a regular basis.

I have been given to understand that your joint visit to Shri Bakshi's office in the Ministry of Welfare was hugely successful.  Having understoon the need for a virtual barrage of letters, requests, etx. in order to help in having the authorities recognise autism as a separate and pervasive disorder, my wife is of the view that perhaps Action for Autism can arrange to take out press space on a regular basis with major national weeklies on the lines of the recent spate of ads released by the Sun Pharma in connection with both Parkinson's and Alzheimer's diseases.  The cost, that is not likely to be inconsiderable can be shared by parents/consultant and the like.  We feel that a barrage of such well-written ads with meaningful write-ups would help disseminate information about Autism and related disorders more widely.

Ravishankar H.
Kharagpur

Ed:  A very useful suggestion.  However taking up any such project would involve the investiment of a good deal of time.  We would be happy to take up such a project provided we have the support of parent volunteers.