N E T W O R K

August 1998 Vol. V, No. 2 

Welcome to the August issue of the Autism Network.
The importance of a structured behavioural program for children with autism, whether home-based or at school, can never be overemphasized.  As a result of the extreme variability present among children on the Pervasive Developmental Disorder spectrum, a great number of so-called 'proven' therapies have sprung forth, each with convincing and enthusiastic advocates.  To every family that comes for assessment and counselling we have to strongly and repeatedly stress the importance of starting a structured programme for the child as soon as possible.

Nearly half these families invariably ask us for more information on various alternative therapies.  And while we naturally do not want to discourage them from trying out any therapy that a parent feels might benefit their child, we do consider it important to inform parents that these should never be the primary form of therapy for the child; rather, that they should be adjunct therapies.  Often times it takes considerable effort and several meetings to convince parents that the primary focus of early interbention has to be on social and communication skills above all else, and that the most effective methods for teaching are through structured programmes.  Starting this issue we carry an introductory piece on the importance of a structured programme, and the first of a series on alternative therapies, explaining what the therapy is all about and its place in the treatment of the child.

In March, AFA conducted a training workshop in Mumbai.  We had the privelege of interacting with an exceptional bunch of parents and professionals and share that experience with our readers in this issue.  We wish the Mumbai parents the very best in sustaining their activities through all the exceptional challenges of parenting a child with autism.

Also in this issue:  At the end of March, Clara Claiborne Park, a greatly admired and respected figure in the field of autism, visited Delhi.  Families based in Delhi, including a number of 'fans (!)' of her book, 'The Siege,' had the opportunity to meet and share with her.  A highlight of this issue is an update on the adventures of the Chaswal family and their energetic member, Vrinda.  And for every parent who has experienced another kind of adventure, that of a visit to the dentist with their autistic child, we carry an individual account.  Finally, it is that time of the year again and we have included forms for both the Parent Workshop as well as the Professional Workshop in this issue.
 

Update on Open Door

The need for the services at the Open Door Outreach and Intervention Centre (ODOI) increases by the day.  It persistently highlights the urgency of setting up the National Centre for Autism so that we can provide the training so desperately sought by families, and which our current physical setup limits.

We welcome two new teachers, Sarah and Rajni, and bid farewell to Tini.  We were very proud to say goodbye to little Rahil as he joined Vasant Valley School.  We are pleased to have Sarah Ann Schubert back with us again.  In addition to helping out at Open Door, Sarah is also conducting a small research project for AFA.

Tamara Cohen, who has become so much a part of AFA and the autism movement in India, married Matthew Daley on 27, June in Urbana, Illinois.  The young couple have the wishes of AFA as well as every family whose life she so deeply touched.  As we go to press, Sandra is at the University of North Carolina attending a TEACCH Summer Training Workshop.  And finally, for th first year, Open Door celebrated its annual day, of which Indu gives us an account elsewhere in the journal.
 

Evaluating Alternative Therapies for Children with Autism

When a child is diagnosed with autism, almost simultaneously while dealing with the trauma of the diagnosis, parents begin to wonder, 'What do I do with my child?' 'What can I do to help him?'  Autism is a disorder with unknown causes, and many different manifestations.  Therefore, it is not surprising that in recent years, there has been a plethora of 'treatments' for autism.  Any treatment is a decision parents must ultimately make themselves.  However, it is more important than ever that parents educate themselves about what these treatments are all about in order to make educated decisions before deciding to spend whatever money and time is involved.  They should acquire a solid understanding of the principals behind the treatment, and should know both sides of the issue-- the parents who say there was no improvement, or a negative side effects, as well as the ones who say their child was helped.  There is also a psychological price to pay for any treatment: hopes may be unrealistically raised and then lead to frustration if a child doesn't improve as expected.

Of the families regularly referred to AFA for assessment or counselling, a surprisingly large number have already received information on various alternative therapies, and often ask further questions.  When a parent hears of a new therapy, the immediate and natural  reaction is, 'I want to try this with my child.  Maybe this will help him.'  And rightly so, parents should have the option of many treatment choices.  The danger, however, is in a country such as India where there is no regulation or control of therapies, nor any pressure for proponants of the therapies to provide evidence of their effectiveness, decisions may be ill-informed.

In contrast to parents' interest in alternative therapies, very few have information on structured behavioural intervention.  Behavioural therapies do not "look" impressive; they do not promise immediate results.  Behaviour therapy is not neatly "packaged," there is no interesting apparatus, no impressive equipment, no pills for the child to swallow.  Rather, there is only an enthusiastic and (hopefully) well-trained therapist.   It is difficult to resist the lure of the 'tangible' treatment option compared to the apparent intangibility of a structured programme.  So parents often focus on these alternative treatments with very high expectations.

However, even if a family feels that an alternative treatment might improve the quality of life for a person with autism or his family, and wish to try it out, it is crucial to keep in mind that these should be considered as secondary interventions to a solid structured programme. Valuable time should not be wasted; every child with autism has the potential to improve, but the earlier such a programme is begun, the better the prognosis.

Dr. B.J. Freeman of the University of California, Los Angeles Neuropsychiatric Institute has written the following information on guidelines for evaluating intervention programs for children with autism in the Journal of Autism and Developmental Disabilities, Vol. 27, 1997.

"The most important thing to remember when attempting to evaluate any treatment program is that every child with autism is an individual and what is appropriate for one child may or may not be appropriate for another.  However we must apporach any new treatment with hopeful scepticism.  As yet, we do not know the specific causes of autism and therefore cannot cure it.  The goal of any treatment must be to help a person with autism become a fully functioning member of society.  Any treatment approach that does not aid in this long-term goal is not appropriate.

"We must always be aware that as yet no one has the 'magic bullet' that cures autism.  Therefore, any (new) treatment approach must be viewed as one of the several options available.  It is important to evaluate the pros and cons of each approach and examine how it would facilitate reaching the long-term goal of independent functioning.  While each new treatment may represent one of several options for persons with autism, only one treatment has stood the test of time and has shown to be effective for every autistic person, that is, structured educational programs geared to developmental level and functioning and teaches functional social skills.  Finally, it is important to realize that some treatment have not been validated scientifically.  The scientific method involves conducting objective studies which are published in peer-reviewed journals.

"Many advocates of alternative treatments rely on anecdotal information to support their position that every child have the treatment.  [Of new treatments] it is important to ask the following five questions:

"Will the treatment result in harm to the child?
This may seem obvious but harm to a child is not only physical.  Harm can also result from failure to provide exposure to the program that would maximize potential.

"Is the treatment developmentally appropriate for the child?
It is critical that a child's developmental level be factored into any treatment plan.  We must be sure that we are not demanding that the child with autism do things that we would ask a typical child to do.  We must also examine what is appropriate across the life-span as a person with autism develops.  What is appropriate at age 2 years is not an appropriate intervention at 18.

"How will the failure of the treatment affect my child and family?
Often families spend all their resources in search of the 'magic bullet.' As is inevitable, when their child is not 'cured' and their financial and emotional resources are spent, families are often in crisis.  It is important to view autism as a family situation and to integrate the child into the family.  Autism must be viewed as a lifelong problem.  If all resources whether emotional or financial are exhausted when a child is young, families are not able to cope as the child grows older.

"Has the treatment been validated scientifically?
This may not be (and often is not) an important consideration for some families.  (But more importantly, many families are unaware that a treatment option being promoted has no proven validity in the treatment of a person with autism.  There is additionally such strong faith in the professional monopoly over knowledge of treatment approaches that most parents never consider questioning such advice.)  However, it is crucial that parents and professionals be aware of the scientific validity of particular treatments.  Some families may want to try out experimental treatments.  If so, it is incumbent upon us as professionals to educate them regarding its scientific validity.  Often people expect the miracle and we as professionals must always temper these expectations.

"How will the treatment be integrated into the child's current program?
This is perhaps the most important question.  We must not become so infatuated with new treatments that we fail to provide appropriate intervention (i.e. structured educational programs geared to developmental level of functioning)."

"There is now ample evidence that when intervention focuses on functional, vocational, and life skills, persons with atusim improve.  It is now well recognized that early diagnosis and intervention is important to imporve the prognosis for children with autism.  It is crucial that professionals be aware and sensitive to the needs of autistic persons and their families.  We must never lose sight of what the long-term goal of any treatment is and must not become infatuated with any one treatment that we fail to provide the education parents need...

"What does the future hold?  In the absence of etiologically based treatment we need to improve the quality of life of autistic persons by providing increased opportunities to be integrated into society.  Specifically, we need increased independent living skills programs and alternative transitional programs across the life-span; increased social support programs and social skills training, and, finally, increased public education and awareness of the unique abilities of persons challenged by autism."

An Introduction to Sensory Integration Therapy
Sarah Ann Schuchert

Sarah Ann currently helps out at Open Door and various AFA functions.  She worked as a volunteer at Open Door in Spring 1997 as well.  Sarah Ann earned a BA degree in Linguistics from the University of California, Los Angeles.  She has experience in working with children with special needs as both an educator and a researcher.  She plans to continue her education in the field of neurolinguistics, from which she hopes to learn more about now abnormal brain development and brain damage affect early childhood language skills.  Her goal is to involve musical patterns and rhythms similar to speech patterns to help children with neurological communication disoders such as autism.

Every year we see new therapies developed and old ones debunked.  Sensory Integration Therapy has gained popularity recently.  It is a therapy frequently asked about at our workshops and counselling sessions.  Sensory Integration is a method developed by speech pathologists and occupational therapists (physical therapists).  It is not a therapy designed specifically for the autist.  Rather, it is a general therapeutic method designed to help adjust and balance irregular sensory functions to a level compatible with day to day living.  These sensory functions include the vestibular system (movement and gravity); bilateralcoordination (coordination of the left and right sides of the body); problems include excessive right or left handedness; the tactile system; and praxis, which is the co-ordination of these systems.

Many autistic people experience difficulties in one or several of these areas.  For example, a child may show a lack of co-ordination in physical activities such as playing ball or going up and down slides.  Another child will appear hypersensitive to the texture of his clothing or food that he is given to eat.  Some children show signs of low sensory development such as low facial muscle tone.  When this is present in the face it can impede expressions and communication.  These sensory problems may add to unusual and socially incompatible behaviours in some, but not all autistic children.  For example, during potty training in families who use Western style toilets, the child might refuse to sit on the toilet. One possibility for this behaviour is that the texture or feel of the toilet seat itself is uncomfortable for the child.  The child may be hypersensitive to the temperature of the seat or the hardness or the smoothness of it.  Another instance of sensory sensitivity occurs when the autistic child unexpectedly reacts to noises that may appear insignificant to their caregivers.  This may be due to a differently developed hearing sensitivity and difficulty in audio processing, i.e. sorting out the various sounds that constantly fill our environment.  These are behaviours and sensitivities that sensory integration suggests improving.

In Sensory Integration Therapy, an occupational therapists trained in sensory integration methods introduces the child to activities that challenge her sensory systems.  If the child has difficulty with balance the OT will gradually encourage her to walk on different textures in order to improve her perception of the ground surface and therefore her stability.  The therapist will work with a child using a variety of tools and objects in a space set aside for this therapy.  The equipment could include a variety of things, such as a large inflated "therapy" ball, an inner tube, big heavy pillows or stuffed t-shirts sewn up at the armholes and neck, a rocking chair, large cardboard types, a small wading pool filled with dried beans or pulses, sand paper, wet clay, and wet and dry sand.  With the supplies, the therapist designs a program specific to the child's sensory needs, introducing textures and movements to the child's world.  If a child does not like to sit on the table because the table cloth is rought, SI proposes that through gradual exploration, contact and play with textured apparati such as sand paper or wet and dry sand, the child will learn to integrate these textures into their perception of the world and thus will have a higher degree of functionality in society.  There are many possible benefits and positive results that sensory integration therapy can produce.  However, it is not recommended as the primary form of treatment for the autistic child.

Remember, SI is not designed specifically for autistic children and it may not be appropriate for every child.  In addition, it is essential that every autistic child is educated in self-help skills, communication methods and independent living skills, preferably through a home-program integrated with a school program.  It has been demonstrated that early intervention programs that provide an accepting educational environment appropriate to the developmental level of the child leads to improvement in children with all degrees of autism, as discussed by Freeman in the Journal of Autism and Developmental Disorders, Vol. 27.  Therefore, a well-structured early intervention programme is the first and foremost form of treatment an autistic child should receive.  Any other additional therapies need to be fully explored and researched to see if they are appropriate to the child's needs.

The concepts and practices of sensory integration therapy are simple and straightforward.  The therapist may specnd several therapy sessions getting to know the child and his or her unique sensitivities.  In this area the parent/caregiver has a built in advantage.  With acute observation, a caregiver is can generally discover what a child's sensitivities consist of.  In fact, at AFA, we believe parents can practice similar sensory integration methods at home with their children.  In every home throughout the world, there are objects of various textures.  One may have a rug or tiled floor or dirt yard; all of these surfaces can be explored by the autistic child and caregiver using hands, feet, and the whole body!  One can rub, tough and play with textures on the back, stomach and face.  Discovering or uncovering a child's sensory sensitivites at home takes exploration and a sense of fun.  Join the autistic as he touches a surface over and over.  What is it about this texture that is pleasing to the child?  What does he feel about the texture?  Explore additional surfaces.  Gradually introduce them to your child through positive play activities.  For example, if the autistic child enjoys touching a wall repeatedly try touching the wall with him.  What is the child's reaction if fabric is placed on the wall?  These activities demand patience and great amounts of emotional and creative energy from the parent and caregiver but they also provide greater insight into the autist's sensory perceptions.

Some children will respond to therapies such as Sensory Integration; others will not.  Their autism may not include such sensory sensitivities.  There are many therapies to try, both old and new.  For further reference, there are several sources in the AFA library on learning therapies such as SI and lifestyle therepies such as diet therapies.  The Autism Treatment Guide by Elizabeth Gerlack is one such book that lists available therapies and contact offices in the United States.  It is greatly important to remember that therapies are tools to be tried.  They can in no way replace a structured educational programme tailored to an individual's needs.
 

Our Annual Day
Indu Chaswal

In the month of May when the mercury soared above 40 degrees Celcius, Open Door decided to beat the heat and creat an atmostphere that was refreshing.  On the morning of 16 May 1998 we celebrated the first annual day of the Centre.

The students, teachers and volunteers worked hard to present a simple yet beautiful show.  Our expectations were straightforward.  We wanted that every one of our kids have an opportunity to participate, learn to perform before family and strangers, and enhance their social skills.  And of course, we hoped that all our kids would enjoy themselves and have a lot of fun and every person present joun them in this pleasure.  The young artists had made beautiful invitation cards for parents, friends and patrons of AFA.  Mr. D.K. Manavalan, Secretary, Ministry of Welfare, was happy to be our Chief Guest.  Representatives of the Royal Danish Embassy were also present, as they always are at every special event of the organisation.

The programme started with the lighting of the lamp and encouraging words from Mr. Manavalan, and was followed by a very special item.  Two of our older boys shared their feelings about being autistic.  It was indeed a moving experience for all.  This was followed by entertaining solo and group performances.  There were action songs from the junior section and a duet sung by our senior boys.  The audience was much impressed by solo performances by our children.

The main feature of the day was a Hindi play called 'Chirag Gaon ke Sangeetkar' ('The Musicians of Chirag Village).  It was about five old animals disowned by their masters and who decide to become singers.  The play kept the audience engrossed and smiling.  The props used in the play were prepared by teachers and volunteers and were much appreciated.  The last item was a series of three songs sung by all the students.  The audience gave a big applause when they heard the Hindi number that conveyed that 'we are all messangers of love in the journey of life and we shall reach our goal by walking together.'

Our principal, Marry Barua, gave a brief, clear report of the activities and achievements of Open Door as well as those of AFA.  Our annual day came to a close with everyone standing up to share greetings and thoughts and to look at the boards that displayed pictures of our kids during their work and leisure hours in school.

This was a pioneer effort made by us.  The clapping and cheering from the audience spoke volumes of their appreciation.  Undoubtedly, it was a big boost for our spirits and energies to hold many more celebrations like this one.

The Workshop That Inspired
Parul Kumtha
Forum for Austim Awareness, Mumbai

Merry Barua and Sandra Dawson of Action for Autism held a three day workshop for parents and professionals from 13-15 March 1998, here in Mumbai.  It is difficult to decide where to start when relating all that happened during those days. This is also because a lot happened outside those three days itself.  Let’s divide the whole gamut of experience into three parts for convenience - preparing for the workshop, the workshop itself, and its aftermath.

Preparing for the Workshop
We are an informal group of parents having children with a socio-communicative disorder of varying intensity, loosely classified under autism. Some of us parents of older children have been in touch with each other for some years and have attended discussions and workshops together. But most of us had met just a few months before Merry’s workshop, through the efforts of our speech therapist and occupational therapist, either or both of whom most of us consult. We had been meeting once a month for sometime when it was suggested that we invite Merry to conduct a workshop in Mumbai for us.  I can’t say that we were at once enthused by the suggestion.  As we all know, the pressures of looking after a special child are such that few parents were willing at first to take on the job of organising the workshop. We argued back and forth about what we stood to gain and lose by organising such a workshop, but finally we decided to go ahead with it.  And a good thing that we did!

No sooner was the decision taken than our motley group of mothers was transformed as if by magic. We set dates for the Workshop a month away and there was so much to do -corresponding with Merry, booking plane tickets, arranging the venue and the menu, registering the participants, making badges and banners, getting hold of a VCR and OHP, getting the reading material folders ready, also note pads, pens, curtains for a dark room for a film viewing … and a hundred other things. Yet there was always a pair of hands offering to help and assist us wherever we looked.  Fathers joined in wholeheartedly.  So did neighbours, friends, even the local bania! Suddenly our group blossomed into the “Forum for Autism Awareness.”  The added responsibility of organising this workshop was far from the burden we expected it to be. The organisational level achieved by us can be gauged by the fact that we were worried about catering for 40 and the final number of participants were 80!  This was possible also largely due to the support and efforts of the therapists who are a part of our group.

The Workshop
The first two sessions of the workshop titled ‘What is Autism’ and ‘Learning to Accept Your Child’ formed the base on which the rest of the sessions followed. Although most of us have dealt with these two issues, the sessions gave us a deeper insight into this disability.  The other topics covered were as follows: Communication, Sensory Defensiveness, Challenging Behaviour, Self Care Skills, Teaching Methods, Leisure and Social Skills, Vocational and Independence Training, Sexual Concerns.

The strength of both Merry and Sandra is that no matter which topics they covered - be it handling an obsession with spittle, learning to read, food habits, aggressiveness, or toilet hygiene, they kept linking it back to the reasons why it all happens - i.e. the traits of autism and their outcome. As a result, the workshop helped us realise that the child can be helped only when one is comfortable with the disorder and its manifestations. Also it brought home the harsh truth that if one isn’t comfortable, the best programme/therapy will fetch little results. For many parents and professionals who participated, Merry’s method of dealing with the child came across as very practical. We were shown how the child can be taught throughout the day - on the way to school, around the home or on the playground; and that therapy can become a way of life. And so, at the end of the three days we had all seen and heard of different ways in which to meet our child’s particular needs. Parents exchanging notes in the lunch and tea breaks declared that they felt better equipped to guide and coach their child as well as more aware of what to expect next. But if one has to sum up what the workshop gave to us, it wouldn’t be wrong to say that it imparted to us a feeling of well-being. In the course of the three days a feeling of helplessness was gradually replaced by hope and trust in one’s ability to help one’s child change and emerge into a self-assured and independent human being. Amazingly, the workshop had begun by stating that autism is a disorder that stays with the afflicted person for life!

We are grateful to Merry and Sandra for giving us their strength. And even more grateful to the parents and students of Action for Autism’s  Open Door School whose contribution to the workshop was palpable not only on the video tapes, but also in the experiences shared by Merry and Sandra.

After the Workshop
Yes, three months after, we can say with confidence that all the lessons learnt in the workshop are possible to implement. Of course it isn’t easy to transform oneself overnight to being comfortable parents, capable of giving 24 hours of therapy a day, but we are trying. Some of us even feel the acute need for “refresher courses” to keep us from straying back into the pit of helplessness, still we are trying. But there are two previous lessons learnt which can’t be easily forgotten. Firstly, by organising the workshop we learnt that in spite of all the constraints on parents of special children, we can achieve a lot and relatively effortlessly, if we pitch in our resources and work together. And secondly, from Merry’s own example, and the video clipping of the families of the Open Door School, we learnt that our children can be better helped when parents decide to step beyond the boundaries of one’s own family and its problems and reach out to others - teaching from one’s personal experiences and learning from the experiences of others.

Thus enriched, our small group continues. Some of us are in the process of getting “Forum for Autism Awareness” registered. Others reach out to parents who have recently had their child diagnosed and get them to share worries and gather heart in talks with other parents. A few of us are trying to set up a reading room where books, articles, research updates, news letters and other information on autism can be made available to parents and professionals. Some of the older sisters and brothers of afflicted children have formed a sibling’s group in which they share their experiences and voice their concerns and fears. Vacation time is utilised by some parents to set up play groups so that our children can be fruitfully occupied. And many other suggestions for activities remain shelved presently for lack of resources.

Of course, besides these, the other day-to-day struggles continue as before: schooling, behaviour problems, housework, job pressures, exams, illness, therapies, siblings …. And very often conflicting thoughts come to mind. One part of the mind rationalises that is unwise to get too embroiled in collective work because the family front and the child may suffer as a result. Yet another part of the mind reasons that in fact work which creates a bond of helpfulness between people with similar problems can only, but only, help the child and the family. With this conflict within us, we inch ahead. Our common aim being simply that our special child’s tomorrow be better than today.

Training Workshop at Mumbai
Sandra Dawson

The Forum for Autism Awareness, Mumbai, a newly formed parent association organised its first workshop from the 13 - 15 March 1998. The diminutive Beena Modak, whose size belies her energy, had attended AFA workshops in Delhi two years running. An active member of the parent group, she had first discussed organising a workshop in Bombay when she was in Delhi last October, and in March this year with the support of enthusiastic parents in their group she did just that. The  workshop was held over a  weekend to make it easy for parents from neighbouring towns to attend. About 60 parents and 10 professionals participated.

The focus was mainly on parents as there are many children who do not get a placement even though the special schools in Mumbai do take in  some autistic children.  The co-operation  and determination among the organisers, essentially all parents was exceptional. It was very impressive to see the way they worked together to achieve their goal. The attitude of the professionals, too, was very different from what we encounter so often.  They were very understanding and open to different ideas and keen to give their time and efforts to help the parents.  Though many of them have been in the field of disability for years, they were open to any  methods that would equip them to teach and train autistic people.

The aim of the workshop was to enable participants have a clearer picture of the disorder, learn to deal with it, and learn methods of teaching. The workshop began with an introduction to autism and its various aspects and then moved on to detailed sessions on teaching communication, social skills, appropriate behaviour, daily living skills and finally, basic academics. Participants were especially interested in learning how to teach self-help and independent living skills and the response was tremendous right through the three days.

The deep involvement of the participants in their children’s development was evident from the kind of questions we fielded during Question Hour. The queries covered most areas of behaviour management techniques and teaching methods. It was exciting to see how interested the families were in actually working with their child, regardless of whether the child was attending a school or not.  Some of the families whose children did not receive any institutional intervention wanted more detailed specific information and so the day after the workshop was devoted to meeting with them in individual  sessions. Judging from the response of the participants, we knew that the organisers meticulous planning and our visit had been worth the effort.

During our stay in Mumbai we also had the opportunity to visit some of the schools and centres that take in autistic people. Our first visit was to Dilkhush Special School, a centre for persons with different handicaps. The students are divided according to their functional abilities, so while some are studying basic academics, others are in the vocational training set up. Of the four autistic persons there, two are in the classroom set up, one in the pre-vocational unit, and the oldest at their vocational skills centre. The principal, Sr. Noella, has expressed a desire for AFA to train their staff as a part of their ongoing training program.

S.P.J Sadhna , located at the Sophiya College in Mumbai, is another special school. They have about six autistic children attending and most interestingly, one autistic young man working for them. Pradeep acts as an assistant to the Principal, Sr. Gaitonde, helping in the office with basic filing and sorting and carries messages for her to people around the school. He is also the school’s official ‘Guide’. He takes visitors to the different departments and introduces the faculty  and the departmental functions to them. Pradeep uses local transport to and from school, on his own, everyday. He attended Sadhna when he was younger and  he now holds this job and is earning a living. He likes to inform visitors that, “Sister Gaitonde cannot run this school without me”!

The AFA team visited a school at Goregaon after the workshop. The principal, Ms. Lata Bakshi, showed a keen interest in starting a section for autistic children. Attending the workshop helped her to understand the need to give her teachers specialized training to work with the four autistic children they have and to consider the possibility of a separate section.

We found that though not all schools are sufficiently equipped to ‘teach’ their autistic students, they are able to see positive changes. This is largely because the staff are generally comfortable and accepting. Their attitude is very positive and encouraging. So, although the intervention may not be specific to the needs of autism, the children still show a slow but steady improvement. We encountered this attitude of comfort and acceptance among most of the families as well.

The Forum for Autism Awareness is essentially a parent support group.  Parents meet at regular intervals to share and exchange ideas  on methods of teaching and training their children. They share their difficulties as well as strategies that have been successful in dealing with them.  Aside from this they also organise activities for their children during holidays. Rather than wait for a professional or a school to organize activities during long school holidays, some of the parents get together and set up their own. This includes teaching sessions, music, painting; sometimes  it may just be respite care where one family takes two other children for the day, giving the others a rest; or it may be an organised outing where a few families get together and spend the evening at the beach, for example. So far they have been very successful in building support among the families.

The entire visit to Mumbai was for us a very encouraging experience. The  acceptance, comfort, support and desire to work with the children, shown by parents and professionals alike, was a breath of fresh air.  The Forum for Autism Awareness has shown a keen desire to provide a facility specifically for autism. They are also considering aiding the set up of special sections at existing special schools. AFA looks forward to creating an affiliation with the Forum…and, of course, helping them achieve their goal.

A Date With the Dentist

N, my son, turns eighteen this month. He is a happy smiling gentle fellow, fond of music and food and fairly lazy! So what’s new in a teenager!!

N is quite severely autistic with intense tactile sensitivities. As a child, the intensity of sensations made many activities extremely painful for him. Bathing, cutting hair, trimming nails. Even being touched gently was sometimes painful. His diet was restricted as he was unable to tolerate the textures of many foodstuffs, and he would not wear certain garments for the same reason.  As it does in most people with autism these sensitivities were not static but instead increased in some areas, decreased in others and even disappeared in some. Of course, most people in his environment were not aware of this and his behaviors usually got labeled as mischief and acting out.

As I trained myself and learnt to be comfortable about his situation and give him his space, simultaneously using various techniques in the home to help reduce his sensitivities, he slowly learnt to deal with the sensations. His range of foods increased and he is willing to try new foods before deciding that he would rather not eat it. Fewer textures of garments bother him, and even when one does he is on occasion willing to try and tolerate it if it is age appropriate or something other teenagers wear. He is able to tolerate most frequencies of sounds, and when he cannot he will simply go out of the room. In most cases he has devised fairly appropriate coping strategies.

 Though cutting nails is still a bit of a bugbear, he now often trims his nails himself though after a lot of persuasion. Getting a hair cut of course has been the mother of all bugbears. N has slowly been phased out of mother cutting hair to a wonderful barber in our neighborhood doing the job. Even at the barbershop as N learnt to sit stoically through a cut, the expression on his face suggested he was getting his throat slit slowly by a grimly sadistic barber rather than merely having his hair cut by the gentlest of barbers I have ever seen. Now, suddenly for the last three months or so N has been going to the barbershop and getting a haircut without any squirming, ducking and so on.  Just like any other guy. The process has taken all of 14 years.

The one near-unexplored area has been the dentist. As the majority of parents of persons with autism will attest, dental appointments are a nightmare that most don’t want to think about. Most of out children have difficulty in tolerating the invasion of the toothbrush in their mouths. A large number are unable to rinse their mouths after a meal, that excellent Indian habit in the forefront of dental hygiene. In our counseling we repeatedly advise parents to ensure that their child drinks a glass of water after a meal, after a chocolate, or after the ingestion of any other tooth-decaying agent.

I had no one to counsel me when my son was still young, so through his childhood dental bacteria had a fairly rollicking time in his mouth.  By the time he was almost into his eleventh year there was this ominous black spot on a molar. However, no one was allowed to explore. I did take N for a series of three dental appointments with a very fancy and very expensive dentist. I explained beforehand about my son’s autism but that did not stop the learned doctor from keeping us waiting for over an hour each time despite prior appointment.

After three visits, a very irritated doctor informed us that there was little he could do about N. Perhaps we should go to XYZ place first and try to get a x-ray of his mouth. I will skip over the heartbreak of the experience at XYZ. Most parents of autistic children will have similar experiences

Eventually the black spot developed into a major dental crisis. Like many others like him N bore what must have been a terrible toothache stoically. What alerted us was the way he held his head, cheek pressed against his shoulder. Finally we found a dentist who took one look at N’s open mouth and advised urgent extraction. He agreed to do so under general anesthesia. N did not stay under long enough, and it was a somewhat botched procedure with N being left with the root and part of a useless molar stuck in his gums. This was six years ago.  Recently the leftover molar flared into an abscess that repeatedly swelled up his cheek before I figured what the matter was.  Expectedly N did not complain, did not mention the pain, made no reference to it whatsoever. In my ignorance I had wondered if N had mumps!  By now I had found a very gentle, very patient dentist. I took N to see him. Of course, in these six years N has changed markedly. As I recounted earlier his sensitivities are greatly under control and he himself makes an effort to be as age appropriate in his behaviour as his autism will allow him.

On our first appointment Dr (Sg Cdr) Suresh Bhalla did an examination of N’s mouth and took an x-ray of the offending molar. N squirmed a bit, anxious about the whole procedure. The x-ray showed up the trouble and we made an appointment for the extraction to occur under general anasthesia, giving enough time for  the abscess to first subside.  Back home, I had a discussion with N and explained exactly what would happen.  I explained that he could have the extraction done under general anesthesia if he wanted, but he could also choose local anesthesia like other 17 year olds. It would only prick a bit when the doctor gave an injection in his gum. It would be a little painful. But the actual extraction would not hurt at all. Would he be willing to try local anesthesia? Yes. N agreed he would like to give local anesthesia a shot.  The dentist, a lovely man, also agreed. If it does not work we can always go back to GA, he said.

The actual appointment? It went .like a dream. Of course I  know that had Suresh not been the kind of person he is, even despite all N’s efforts, his dental appointment would not have been as successful as it turned out to be. Suresh was extra-gentle and comforting. He first explained to N what he was about to do. He showed him the injection and explained how it would help numb his gums. In short he respected N’s intellect. And N made an extra effort at tolerance. As soon as he felt something touch his hypersensitive gums his first reaction was to turn away.  Suresh coaxed gently and I stood across from N and modeled my mouth for him.   To the delight of both Suresh and myself, and of course N, he allowed anesthesia to be injected into his gum and the tooth extracted right from the roots. There was just a small piece outside the gum from the earlier botched job, so the dentist had to really pry and pull in order to get it out by the root. Took just 20 minutes!

If four years ago someone had said this would one day be possible, I would have found it hard to believe. Perhaps I would not have dismissed it out of hand because even by then I had learnt that a lot more is possible than we can imagine, if we only believe. And work at it.  I am incredibly excited and proud for my son. And I know he is proud for himself.

Travels with Vrinda:  Then and Now
Indu Chaswal

(A previous journey was described by Indu in ‘Travels with my Child’,
Autism Network, December 1996)

This year we spent our summer vacations with my parents in Jammu. After months of hectic life in Delhi this visit was a much wanted break for us, but, as usual, I was very apprehensive about travelling with Vrinda.

During the past two years there have been several positive changes in some of Vrinda’s difficult behaviours. These are not sudden changes, but a gradual metamorphosis that has taken place due to her training and my awareness on autism. Today I know that Vrinda’s undesired behaviours are not due to anything like a low level of understanding or abilities. In fact, she can comprehend much more than she appears to. Talking to her about what is going on and preparing her for a change helps her a lot to cope with daily life.

I kept all this in mind and used all these things in planning our visit to Jammu and for the train journey. Vrinda gave me a very pleasant surprise by behaving like any other regular seven-year old (or maybe even better!). About two weeks before we had to leave Delhi I started preparing Vrinda for the journey.

There were so many things that I felt she needed to know:
Where were we going?  I told her we were going to Nani’s (grandma’s) house. We both sat down with a paper and pencils and she drew pictures of Nani’s house. She also drew trees that she remembered having seen the last time she visited Jammu. I was really overjoyed.

Who was going? She was told that Vrinda, Mikoo and Mummy would be going and that Papa and Mataji (my mother-in-law) would be staying at home. Papa has his office and Mataji does not want to come.

How would we be going? This was the most important thing. We both spoke about going to school in an autorickshaw, going to the market by car and, since Jammu was very far, we would be travelling by train. I drew a picture of a train with people sitting in it. I told her that we would take a train from the railway station. There would be other people in the same train with their luggage.

There were many other things that she was informed about. The date was marked on the calendar. She was told that after three weeks we would come back by train and after that her school would re-open.  I also had to keep in mind Vrinda’s compulsive need to appropriate and investigate every other passenger’s belongings. So two days before the journey Vrinda was given a small carry bag.  She was helped to put in her tooth brush, towel, slippers, a set of clothes, crayons, etc. and our whole family kept repeating, “This is Vrinda’s bag.  She will look after it just as everybody else will look after theirs.”

Finally the 15th of June came and Vrinda said bye to her father and got into the train. We were travelling by IInd AC and, thanks to the computerised railway reservation, all our berths were separated! But I was very confident and most of it was due to Vrinda’s smartness. She walked along the platform and into the train with her little bag on her shoulders saying, "Yeh train hai" (This is a train), “Isme toilet hai” (It has a toilet), “Train chalo” (Train move).

The ticket collector agreed to exchange our three berths for two berths that were lower and opposite ones, and in the bargain he gained one berth (you know what I mean!)  It was a night journey. The train started at 10.30 p.m. and to my surprise Vrinda said that she wanted to sleep. I asked her to open her bag and take out her towel. I took her to the toilet and on the way she stopped. Suddenly she smiled and said “Yeh baby hai” (This is a baby) looking at one. In the toilet she sat holding me tight at my legs. After washing her face and hands she was back on her berth and again to my surprise, she said “Put the light off.” Vrinda slept till about 7 a.m. When she got up I told her again that we were in a train and that she was being really smart.

As the train moved on people on the upper berths got down. There was a couple in the same compartment and they were the kind of passengers who love to have a kind of picnic on the train. They were eating most of the time. Not once did Vrinda ask for their food. She said, “Give Vrinda’s tiffin.” The concept of something belonging to others has not to be asked for or eaten is something she has learnt during her ‘tiffin time’ in school.

Vrinda did colouring, played with her blocks and, of course, she kept on talking: ‘This is a train’, ‘This is Pepsi’, ‘Bring Pepsi' (looking at the platforms at stations), ‘Vrinda touch Mummy’s hair’, ‘Mummy kiss Vrinda’, etc. She even rolled on the berth,* but I think it was my comfort that helped Vrinds to cope with the situation most. The train was late and the last two hours of the journey (Pathankot to Jammu) were full of fun for her. The compartment was quite empty and I allowed her to move around, following her. She also jumped here and there, but I kept saying, “This is not our berth”. Whenever she sat down I praised her. She had managed to attract an ‘uncle’, an elderly person who kept smiling and speaking to her. Unlike on her earlier train journey, Vrinda respected other people’s bodies and their belongings and I felt proud of her.

During our return journey Vrinda was a little curious because it was mainly a day journey and she could see things outside. To my surprise, when the train moved over a bridge she sang ‘The kids went over the red bridge’, a song she has learned at school.  Vrinda has given me a lot of confidence and relief this time. I can think of travelling more often with her now. At the same time, I keep wondering was it not my ignorance, was it not my lack of understanding of my child’s mind and her autism that had made all our earlier journeys so difficult? Many other parents who are as yet unaware of autism or how an autistic child feels may be facing many problems during a journey. We need to educate ourselves first, and then society, to help our kids to be comfortable and happy using public transport.

(*’rolling’ for Vrinda is a coping mechanism.)

Training Your (Female) Child
Jyoti Rao

One of the problems all mothers face is how to train their daughters when they first have their periods.  It is a difficult task even with normal children.  So, how did I go about this with my autistic daughter Annu?  Here I would like to share with you how I handled the situation.

The first thing I did was that whenever I had my periods I would treat it as very normal happening in life.  I would bring the sanitary napkin and keep it in the bathroom where every one could see it. I have a son who was younger than my daughter Annu. I explained to him that a bag is formed in my inside from where he and his sister came from and when there is no baby the bag comes out.  So, there is a lot of blood coming out and I have to use the napkin.  I could explain to my son but there was no way to tell Annu all this.  The best way I thought is to go about it was practical demonstration. Whenever, I had my periods I would take out the napkin in front of her and put it on the panties and go to the bathroom and wear it; even throwing the napkin was also done in front of her. Usually, I would do it when the other members of the family were not present.  I would also keep the bathroom door ajar a little bit so that she could see what I was doing.

So, when her periods actually started, all I had to do was to take a sanitary napkin put it on her panties and ask her to wear it, and also to ask her to change it again before going to sleep. I started keeping note of the date when she was due.  I would put the sanitary napkin in her panties around the due date.  Now the next question was 'Will she be able to manage on her own?'  So one month, I did not prepare her though I knew she was due for her periods. She came near my kitchen door and asked me "Give me Stayfree. Chaddi  Kakka." (chaddi in our language means panties).  I was very happy to hear these words.  Here I should mention that I purposely did not buy and keep the sanitary napkins in the house ready for use, as it would not serve my purpose of finding out whether she could ask for it when the need arose. As soon as she asked for it, I went and bought the Stayfree immediately and gave it to her.

One more thing I would like to add.  Many people have asked me whether it is advisable to let their child undergo a hysterectomy.  As far as I am concerned, I would not like to go against nature and also did not want to get into other complications.  I feel it should be left to the parents to make the choice, as we all know each child is different from the other.  I do not know whether this is the right and the only way to go about training your child.  It worked with my daughter.  Maybe it may help some other parents too.

Helpline

Q. Whenever I go out of sight my son cries. If I am in the kitchen he calls ‘Amma’, ‘Amma’, repeating the word even for half an hour. When I am with him he is quiet.  My brother-in-law’s three-year-old son tries to play with him, but my son is not playing with him. He should play with other children.  He should avoid repeatedly doing the same actions like swinging towels and clothes.  His has to learn more things.

A. You have mentioned that he cries every time you are out of sight and quietens when you are around. Very often we assume that autistic children are not really bothered about what goes on around them. In fact, the reason why he cries is probably because he sees you are gone and is stressed about it. His communication difficulty hinders him from asking where you are going, why you are going, how long you’ll be away, etc. as a regular child would do. That is why it becomes very important to talk to your son and prepare him for everything that is going to happen. If you have to go to the shop, explain it to him. Keep your explanation very simple and clear. You will find that this will reduce his stress to a great extent. If it so happens that you tell him you are going away for an hour and you take longer, just remember to talk to him about the delay when you get back.

Also remember that crying and repeating “Amma” over and over is S’s  way of communicating with you. What you can do is provide him with the appropriate words or gestures to use. Right now he does not know of any alternative way of communicating with you. When he cries ‘Amma’ in order to have you come to him or attend to him in any other way, you can say “Amma come here”, or “Amma give food” before responding to it. This way he learns the appropriate language in the appropriate situation.

Play is a very complex social skill that autistic people find very difficult to deal with. Their impaired imagination makes it even more difficult for them to understand pretend games and unwritten rules. That is why autistic people ‘work’ much better than they ‘play’. When a game is organised and methodical they are much better able to understand what is expected of them. To start with you can use simple card games such as making pairs of the same  picture, building blocks, fitting puzzles, etc. to build on his play. Take turns with him so that he learns the skill of taking turns and waiting for his turn. Play a lot of pretend games with him even if they are childlike. They will help him to use his imagination. If possible, teach him to ride a bike, swim, play badminton, etc. - anything that he can do alongside other children without the pressure of interacting or figuring out social rules.

When your son is not occupied by you or any other member of the family in an activity, then he will indulge in various obsessive activities to keep himself occupied: such as swinging a towel. Unlike other children he is unable to occupy himself in a manner that would be considered socially appropriate. You mention that at home he spends a lot of time lying on the floor on a mattress and pillow. Perhaps you could set up a schedule of activities during the day. When he returns from school and after he has rested a bit involve him in certain household activities. Perhaps he could bring in the washing; help you to lay out lunch; help family members in making the bed. Help in making the bed could, to start with, be something as simple as S standing there holding the pillows while you straightened and tucked in the sheets. . All these jobs you will perhaps be able to do far quicker without his help. You could just as easily put the pillows on a chair instead of having S hold them.. But the idea is to involve him and get him connected versus staying lost in his own world.  The more you can involve him and the more he enjoys it the less opportunity he will have to indulge in ‘towel-swinging’. Telling him, ‘S stop that’ might  stop the behaviour for the moment but will not help in either reducing or eliminating it.
Even better would be if you could enlist his teachers’ help to set up structured activities for S in the house.

It is really good that he is attending a school where he can learn some academic skills. More important, however, is for him to learn to take care of his day to day needs. It is good for a child to know 200 and 35 is  235 but it is more helpful if he learns to pour himself a glass of water or  know how to ask for help.

Q. I have a lot of difficulty with my son’s behaviour.  When we take him anywhere he runs away. He takes things from shops. It is very difficult. He is going to a school for mentally retarded. There are many children with autism also there. We  have meeting with teachers and  parent.  I tell the teachers about my sons problems. His teacher says he does not give problem at school. He only gives problem at home. Please guide us what we should do.

A.  See the question and answer below.

Q. Our son A is 13 years old and attends a special school. We are concerned that he does not sit for more than 10 minutes at home to do any activity. He runs out of the door if it is left open. We have shared this concern with the school but they said that he never does this there. Can you please advise?

A. It is very good that your son’s behaviour is appropriate in the school environment and that he sits for long periods and does not run away. Since his behaviour is different at home and you are concerned about it, I would suggest that you ask the school for suggestions on dealing with the behaviour at home. We have not seen your son and do not know him at all. On the other hand his school sees him everyday. Your child is attending a special school because he has special needs and since he spends several hours there every week they will know his behavours well. The school will want to provide a holistic education so explain to them the situation and ask for guidance.

Very often, with autistic people, a skill may not be generalised. A skill learnt at school may not automatically be exhibited at home, and vice versa. So the skill has to be taught in every environment to help generalisation. Learning and teaching is not limited to the school environment alone and A’s school will be happy to advise for the home. Ask his teachers what methods helped them deal with A’s behaviour at school and ask them for help to adapt the suggestions for the home.

If I may add a couple of points here: Firstly many parents have the feeling that they are somehow at fault when their child exhibits certain behaviours. No. Absolutely not. Parents are not born experts in behavioural techniques. Neither are professionals. Both have to learn. And it is the latter who must help the former. And actually in many situations parents naturally know the appropriate approach to take, better than many professionals.

Secondly, we often receive queries about behaviour at home that parents want to change and which they have been informed does not occur in the school. Don’t drop it there. Pursue it. Ask the school, why? Why does it not occur in the school. What is different? Though we are always happy to provide suggestions, those are far more general because often we do not know the child concerned, and each child is an individual with distinctive behaviours. In all such situations we suggest that parents approach the school for guidance first. It is the right of every parent to ask and the duty of each special needs school to guide in home management. Most schools are happy to help; so go ahead and ask.

Letters to the Editor

We have two daughters and the second is Aishwarya, born on the national day of Nepal, 12 September 1981 and hence named after Queen Aishwarya. Aishy, as she is popularly known, exhibits typical autistic features. She is fond of drawing and then cutting the pictures size-wise and storing them like playing cards. Her pictures include that of her teacher, Goddess Lakshmi, Sarawathy, etc. She has a flair for pencil drawing. her memory being sound, she is able to recollect events right from age four. On her birthday last year, she drew a picture of her teacher, Jaya Aunty, who is not in her school now but in 1986 taught her (Aishy) to identify vegetables. The feature of this picture is that she has drawn bitter gourd, ladies finger, green chilly, etc. to denote the mouth, nose, ears of her teacher. The flower represents the design in the saree.

B. Sriram, Madras

The Autism Network is a great help to us. It makes us aware of many aspets of the disorder. It is really encouraging the way your organisation is working for this problem. We do not get any help from (the special) school. We are trying to teach our son, as much as we can. But sometimes we feel depressed for the fact that we are not able to give him sufficient training. Sometime if you are able to arrange any programme for autistic children outside Delhi please inform us.

S.G., Dehra Dun

In your December newsletter, a parent has asked a question and shown a lot of concern on his son laughing at other children inappropriately. Your answer to the question is on the target. My answer would have been the same; to talk to your child and teach him, work with him instead of getting angry with him, or getting yourself all worked up. Pat and Frank Mathews, parents of a child with autism living in Ireland, have explained and written a poem which I would like to share with all your readers.

Laugh When You're Happy

Is it wrong to laugh, when the time is not right
Is it right in the daytime, but not right at night
Is it right when you're happy, but not when you're sad
Is it alright to smile, if you're just feeling glad
Is it right to be happy, when I shouldn't be
Is it alright for others but not right for me?

I also want to congratulate you for a very informative journal; I look forward to reading each issue. I will be in Delhi to administer Auditory Integration Training from November 20-29, 1998. Those interested can get in touch.

Sharda Ramlackhan
54 Jennifer Road, Lowell, MA 01854 USA
 

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