N E T W O R K

April 1998 Vol. V, No. 1

Page One

This has been a busy few months at Action for Autism.  Our awareness cum fund-raising concert, Autism RAIN (Autism:  Raise Awareness Now!) passed off splendidly.  Our outreach has grown steadily.  There has been a significant increase in the guidance and counselling we have been proving, including that through the mail, as well as e-mail.

The young people at the centre have been participating in painting and dramatic competitions.  Considering that each of them have autism, many of them severe, it makes us marvel at the felicity with which they have all learnt to deal with novel situations.

On the legislative front, the scope of the National Trust Bill for Persons with Mental Retardation and Cerebral Palsy has been widened to include Autism.  However, whether and when the Bill will become an Act remains to be seen.  The state recognises that all citizens of the country are entitled to a certain basic need.  The state commits to probide a quality of life to those vulnerable sections of society who have no parents or guardians, and whose families do not have the means to provide for their future.

Keeping the very large section of such disabled in mind, the National Trust Bill for Persons with Mental Retardation and Cerebral Palsy was drafted at the start of the decade.  However, the Bill was left on the backburner for many years.  Last year consultations on the Bill were revived and a number of meetings were convened.  Action for Autism was included in the drafting committee.  However, the Bill seems to have lost its way again.

There has been a strengthening of the network with families in Mumbai.  Aswe go to press, an AFA team has just returned from conducting a workshop for parents in Mumbai.  We were deeply moved by the motivation, enthusiasm, and determination of parents there to take the initiative, in heartening contrast to the norm in many parts.  If parents everywhere have the same motivation, drive and positive thinking, we can change the face of autism in India in a far shorter time.

In an earlier issue we touched on some aspects of ‘challenging behaviours.’  In this issue we illustrate it with a specific behaviour and the approaches tried to extinguish it.  For those who found our suggestions on ‘Teaching Appropriate Eating Habits’ useful, this issue carries the third and final part of the series.  And of course there are all our regular features.

A final word.  There are many families out there who have tried various strategies and seen significant progress in their children.  As before, we ask you:  share, share share.  Write to us with your experiences.  For every ten families who read your piece you will make a difference in the life of at least one!  And for every family for whom you make a difference, you make a difference in the autism movement and a difference in your life and the life of your child.

The world does not begin and end with my child; rather, with every youngster out there whose life we can touch in some way.  It is a beautiful circle that touches us all.  So let us share.
Artwork for Calendar
 

Developing Appropriate Eating Habits, Part III
Sandra Dawson, Open Door

Some persons with autism often have difficulties in eating different kinds of foods, eating neatly, and using cutlery and crockery appropriately.  They may not develop appropriate eating habits like everyone else.  Therefore, especially in a culture like ours where food, as we are all aware, is an integral part of social situations and has connections with communicating aspects of feelings of love and well-being, meal times, and eating in general, can be stressful and frustrating.

Over the last two issues of Autism Network, (Vol.  IV, No.2 and 3), we have been discussing how we can get the autistic child to sit and eat, to sit at the table or a designated area at mealtimes.  Later we suggested ways of teaching a child to eat on his own and eat neatly.  We also mentioned specific ways of structuring the environment in a manner conducive to teaching appropriate eating habits.

As mentioned previously, Indians have eating habits far more varied than most peoples.  The variety ranges from eating areas, to kinds of furniture used for eating, to the kinds of crockery and cutlery used.  Therefore these steps shared with you are suggestions that can be adapted and not strict do's and don'ts that have to be followed rigidly.  We must emphasize, though, that regardless of what the situation is, one must carry out these suggestions with comfort, and consistency, and persistence.

Keeping in mind the preceding discussions, we will now move to: introducing a varied diet and dealing with undesirable eating habits such as eating inedibles, eating only junk food, eating too fast, and overeating.

Introducing a varied diet
A child's willingness to adopt a varied diet is directly linked to two main aspects:  a) the child's sensory sensitivities and b) acceptance by people in their surroundings.

If a child is very sensitive to certain textures such as soft', 'slimy', 'squishy', then he will naturally tend to avoid foods such as some cheese and egg preparations, or dal and rice mixtures.  Each child's sensitivity is different and we need to be aware of types of foods that may be bothersome.

Once we are aware, since we also know that it is a part of their autism and they are not just being difficult, it becomes very important to be accepting.  It will also keep us form forcing the child to eat foods that he cannot tolerate.  As the child learns to be comfortable at his eating place and can feed himself, then one can begin to introduce new foods.

New foods must be introduced in extremely small quantities along with a much desired food.  For example, if the new food is half a segment of orange, and the desired food is a biscuit, tell the child, "Finish orange, then have biscuit".  Similarly with other foods also you can use phrases like "one bite, then biscuit", or "eat orange, then biscuit, etc.  With children whose ability to tolerate is very little, you can even begin by asking the child to "take one lick" or "taste once" and then promptly allow him to receive the favoured food.  Each time the child tries even the smallest bit of a new food, cheer and praise him as if he has won an Oscar.  Let him know that you feel proud that he has done so despite his difficulties.

The child may or may not try the new food.  Sometimes he would rather skip the favoured food than consume a bothersome food.  Don't let this discourage you.  Keep trying again and again with different foods.  If the child feels accepted and understood, he will make the effort to try a bit.

Another method of encouraging new foods is that at mealtimes put tiny pieces of undesired foods on the child's plate.  There is always the possibility that he might try it.  If he does, praise profusely.  If not, make no comment, but try again some other time.  Sometimes when the child does pick up and eat a new food it excites those around him, and he is immediately given more and larger pieces of the food.  This is best avoided.  Unless the child requests more, wait till the next mealtime to serve him more.

These methods need to be tried in many different places at different times so that the child learns to eat a varied diet, making mealtimes easy to deal with.

Teaching the use of spoon and fork
There are children who are unable to use their fingers to eat soft squishy foods.  Many families in such situations, who in the normal course do not use cutlery, often provide cutlery for their autistic member.  Additionally, families that make it a practice to use spoons and forks and knives during a meal will want to teach their children to use them.  We move to teaching this behaviour only when the child is very comfortable feeding himself and has enough gross motor control to hold the spoon steadily.  Initially the teaching will be hand on hand.  Mould the child's hand over the spoon in the appropriate manner and then holding the child's hand, gently but firmly, maneuver the spoon to pick up a small quantity of food and move it to the mouth.  Use foods that are not completely dry and that will not slide off the spoon.  Repeat the action as often as required until you feel the child gripping and moving the spoon on his own.

Now you can slowly begin to fade your grip and just prompt the child to hold the spoon.  With many children this prompting may even not be required.  Again, plan and prepare the physical environment in such a way that the child is easily successful even in the mildest attempt to perform the task on his own.  For example, pull the chair right up to the table, have the plate almost directly under the chin so that the food is closest to the mouth and a mess is avoided.  Use a spoon that is a size appropriate to the child’s ability to manipulate objects, use plates that will not allow the food to spill over while being pushed around by the spoon.  Also make sure that the sides are low enough not to obstruct the movement of spoon to mouth.

The use of a fork needs to be taught with a little more care because of its sharpness.  Hence with younger children, a spoon is a better idea.

Again, as often mentioned, autistic people have difficulties in generalizing skills, i.e. just because a child can use a spoon at the table in his own home does not necessarily mean he will and can do so in restaurants, parties, other homes, etc.  Therefore each skill taught needs to be reinforced in many different settings to help the child generalize the newly gained ability.

Dealing with undesirable behaviours
a) Eating too fast: Many parents say their children stuff their mouths with food or eat too fast.  In such situations, explanations and demonstrations are not as effective as physical prompts.  Sit with the child and place a hand gently over his during the times his mouth is full.  If the hand is lifted before the food is swallowed, put gentle pressure on the hand to indicate a "wait" sign.  This could be supported with a short instruction, "finish swallowing".  Some parents have used 'stop' signs that they hold over the plate while the food is being chewed, some hold a written instruction in from of the child that says "finish swallowing before taking next mouthful".  As a parent and caregiver, you know your child best, so try different ways and you are bound to find one that will work.  Always remember to stay comfortable and accepting of the impairments of the child's social skills.

b) Overeating: This behaviour can easily be brought under control by structuring the physical environment in such a way that at all other times except mealtimes, food is out of sight and out of reach.  In many homes, autistic children eat because they can't think of another way to occupy themselves.  So apart from putting away food (locking cupboards and fridges, if necessary) leave items of interest around, like books, puzzles, etc available for the child to use when desired.

Aside from this, if the child during meal times finds himself unable to figure out when to stop, then that will have to be taught to him.  Serve less food to start with.  Have only enough for a certain number of helpings, i.e two or three for each person present and tell the child "You can take once more when you finish".  When the child is taking his second helping, tell him, "This is the last time" and when he finishes, say "Finished, time to eat is over".  Statements such as these must be followed through even if the child asks for more.  Learning not to overeat is an important social skill.

c)  Use a timer: Set the alarm for 10-15 minutes later, depending on the speed at which the child eats, and tell the child "when the bell rings, eating time is over".  When the alarm actually goes off, gently and quickly remove the plate so that the child makes the connection between the two.  Avoid reprimands.  Reprimands only stress out the child and make it more difficult for him to learn.

d)  Crying at such times: Some children may cry or show other undesired behaviour at such times.  These attempts to get their way must be ignored completely and with comfort.

e)  Eating only junk food: Junk food such as chips, Pepsi, crunchics, etc are high energy producers and are not good for any child.  Thus to teach them to eat other foods, methods similar to introducing a varied diet may be used.  In such cases of course, junk food may be used as a reward instead.  Sometimes children are given a soft drink or a bag of chips while the family is busy or has visitors to keep the child busy and out of trouble.  This is not a good idea; besides teaching the child that if he or she is disruptive enough when there are visitors he is rewarded with a bag of chips!  Occupy the child in other ways using things that interest him.

f)  Eating inedibles: Children with autism lack the social skills that refine eating habits as they grow older.  At an early age all children explore tastes and textures orally.  Due to developmental delays, this form of exploration lasts way beyond the expected time.  After a certain age, parents and caregivers begin to get concerned with this perfectly normal aspect of development and try to stop it.  The child learns that this behaviour is exciting attention and because he lacks the social skills to know appropriate ways of getting attention, he tries this behaviour.

To avoid turning this behaviour into one that is challenging, we need to comfortably ignore it right from the start.  It will phase out if no attention is given.  Some children may use this method of exploration for a longer period than others, but will definitely grow out of it sooner or later.

As we do so often, we want to again stress on consistency and comfort in implementing these methods of teaching.  Also, these skills will have to be reinforced as mentioned earlier, in various situations outside the home as well to help him generalize.

In this last of the series on appropriate eating habits, I want to stress that there will be individual differences.  But these methods shared have been effective with a large number of autistic people and can be with your child too.  Many families will have their own experiences to share, of situations they have faced and methods they have successfully used with them.  Do write in with your experiences, and feel free to write and share specific queries you have.

"Autism: An Indian Perspective"

No matter what your experience with autism is, if you are reading this journal then you have probably been asked, 'Could you just tell me, what is autism?' For anyone who has faced this question and stumbled through the complexities of the disorder, help is on the way.  Autism: An Indian Perspective, a fifteen -minute film by Action for Autism provides a clear and straightforward introduction to autism and explanation of the basic areas of impairment of the disorder.

The film focuses on communication, socialisation, and ritualistic and repetitive behaviours.  It illustrates the way a child may be affected in these areas through several avenues.  In Autism: An Indian Perspective, we meet the families of four very different children: Aakash, Vrinda, Chinky, and Sutirtho.  The parents of these children help us understand how autism effects their child.  More importantly, they show us but how it effects their family and, interestingly, how a family can affect autism.  Clips of children and remarks by their parents are interwoven with a clear and sensitive narrative tying it all together.

Since many families of children with autism do not know how children besides their own behave, the film also features footage of other children and teenagers with Autism with varying abilities and impairments.  Through these very different children we gain a broader sense of how wide the spectrum of the disorder can be.  Viewers will appreciate that this film clearly dispels certain myths about autism without unnecessarily dwelling on them.  These include misconceptions such as that children with autism do not form attachments to people and are not as affectionate as other children, that autism only affects families of certain backgrounds, and that children with autism cannot improve much.  We can see with our own eyes that all these notions are inaccurate, as well as hear parents poignantly describe the importance of family attitudes and beliefs in helping their children improve and grow.

This film is ideal as an introduction to autism for the student of special education, the newly diagnosed parent, and for the layperson as well, to increase awareness and understanding of this puzzling disorder.  Parents of children with autism may also find the tape useful to show to family members who do not live nearby and who may have difficulty understanding how a child with autism differs from others.  We all know that a picture is worth a thousand words.  You may just find that Autism: An Indian Perspective provides you with those words of explanation you have been looking for.
 

It Never Rains, It Pours
Abhrajit Bhattacharjee

Some say that it really does not take all that much to have a good time.  After all, you need just a few ingredients:  great people, awesome music, perfect weather, and a good cause.  But it is the recipe that counts.  And what a feast the Autism Rain Concert was for music lovers at the Indian Habitat Centre on the night of December 13, 1998.

Organised by Action for Autism, the Autism Rain Concert did much to both educate and entertain the citizens of the capital city.  It was an evening packed with people and with events.

First up was 'Just Us', a popular trio of lovely ladies who are familiar to those in Delhi who like simple, uncluttered sound.  Though the Concert Program warned us that the songs may not be familiar to those without stereos in the sixties and seventies, it hardly prepared us for so much fun!  Equipped with infectious smiles, a harmonica and acoustic guitars, they had the audience swinging and clapping along.  The ladies were there to have a good time, and once we heard them sing, we crashed their party!  Evergreen favourites were what they gave us, and we loved it.  This was also the second time that 'Just Us' sang to help raise awareness about autism without a fee, and we hope that whenever Action for Autism decided to have another concert, we will see those three lovely ladies again.  From all of us in the audience, thank you!

From the acoustic, and the uncluttered, we moved to the world of audiovisual.  Up next was a short documentary that Action for Autism produced with the help of Mike Pandey and his team.  Called "Autism: An Indian Perspective", it took us into the lives of many families who have to deal with autism everyday, and was a stunning visual treat.  Not only did it focus on the Indian facet of the disorder, but it also showed us that though autism may never be cured, it can be overcome every day, with courage, determination and love.

As the lights came up again, we realised why we were there that evening.  It was time for the students of Open Door.  Excited and delighted to be there, the children belted out their music, accompanied by their teachers, and a wild bongo drum.  They were great, and in so many ways, were no different from us. They could sing, they could laugh, and as they told us that we would overcome one day, there were many wet eyes in the audience.  We all loved them that evening because they showed us that they, too, could choose to be happy.  Bravo, kids.

And then it was time to get down to business. Indian Ocean Live at IHC.  This nationally renowned, best selling band was simply phenomenal.  It was a night of sheer rhythm, haunting vocals, and pure energy.  These are a bunch of guys who live for their concerts, and if you heard them that night you would know why.  Rooted in the tribal sound of the subcontinent, Indian Ocean has redefined the concept of Contemporary Indian rock.  Buoyed by the success of their first album (which has sold more than 45,000 copies all over India), as well as their latest release Desert Rain, Indian Ocean was in full form that December evening.  They swept the audience out of their seats and on to their feet.  From thundering drum rolls, to piercing guitar riffs, from impromptu tabla solos on the base guitar to conscience pricking lyrics, it was a magical evening.  And the audience just did not want to let them go.  If the demands for encores were anything to go by, Indian Ocean emphatically demonstrated that evening that contemporary Indian fusion rock has arrived.

The Autism Rain Concert ably demonstrated that the people of Delhi want to listen.  Listen to both good music as well as to people who impact the lives of those whose voices are rarely heard.  Though many of the people who came that night barely knew how to spell autism, few left the evening unmoved.  When faced with the fact that approximately 17 lakh children in India suffer from autism (of which a minuscule minority has been diagnosed or treated) some volunteered their money, and a few, their time and services.  But almost everybody realised the importance of thinking about people other than ourselves.

Call me optimistic if you like, but I would like to think that The Autism Rain Concert was another small step in the right direction: the day when all of us live what we sang that night, and overcome.  One day.
 

Challenging Behaviour: A Mother's Perspective
Indu Chaswal

I have been dealing with the difficult behaviours of my six-year-old daughter much before I came to know she had autism.  Now I know what autism is and that helps me understand some of her behaviours.  I feel that sessions with her teachers at Open Door, and the reading that I have done during these last one and a half years have helped me to a great extent to deal with these behaviours in more effective ways.

I try to manage most of Vrinda's challenging behaviours by 'ignoring'.  During this 'ignoring period' I try to find a suitable activity that would also divert her.  But sometimes it is difficult to ignore all such behaviours.  And if one is lucky one might even find an alternative way to eliminate the behaviour.  A few months ago Vrinda started spitting.  She did not spit on others, but enjoyed herself spitting on plain and smooth surfaces like table tops, the floor, sheets of paper, etc.  She added a further refinement by putting her fingers deep in her throat to get out larger quantities of spit.  She had pools of the stuff flowing on the floor!

Spitting is unpleasant and in our society also considered insulting behaviour.  So, I sat with her teachers and we discussed what the most effective way to overcome this behaviour.  In ignoring the behaviour we realised she was getting a lot of reaction from the other children through curious looks and sometimes comments.  We realised that in ignoring the behaviour, in not paying it any attention, in not giving it power we had to make sure there was no reaction from other children either.  So every time the spitting started we moved her casually and of course very comfortably away from the group and had her sit apart.  Thus she missed out on the fun the others were having as well as activities she enjoyed.

The spitting abated in intensity but it was still very much present.

In the meantime, it was suggested that I check out the 'Parent Survival Manual' by Eric Schopler.  This book provides ingenious solutions that parents have developed as coping techniques to the continual challenges of living with autism.  In the book one of the parents has shared astrategy for eliminating spitting she had found useful.  I read it and modified it a bit to my own situation and then tried it.  Our family and Vrinda's teachers were informed about it and we all worked together to reduce this behaviour to near extinction.

Whenever Vrinda spat, preceded by a finger down her throat, we would show great concern and with a very serious look on our faces would say, "Oh dear, Vrinda is not feeling well.  She has a bad throat.  She has to be given medicine." After this we would put a capful of vinegar into her mouth.  This was the only reaction to the spitting and was repeated comfortably and consistently.  It was never a punishment.  But the fact that the vinegar tasted very bad and the word 'medicine' makes her uncomfortable, did the job.

The 'Parent Survival Manual', and co-operation and coordination between our family and her school helped us to cope with Vrinda's challenging behaviour.  For spitting, I would recommend the 'vinegar therapy' as I call it.  It may work for other parents.
 

My Experience with an Unusual Behaviour
Kumkum Seal

As a new trainee at Open Door, the different kinds of behaviours I encountered often made me wonder if I would ever be able to deal appropriately and spontaneously with them.  Early on in my training, six-year-old Vrinda brought me face to face with a situation which I never thought I would be able to tackle.

The first time we noticed the behaviour was one day during morning attendance time.  Vrinda suddenly put her finger down her throat, made a retching sound, and then spat on the table.  She was taken to the toilet to finish off.  The idea of staying in the toilet did not appeal to her, so she said that she had finished spitting.  However, as soon as she was back in her seat, she again went through the same exercise of making a sound and then spitting.

Initially we decided to ignore the behaviour and we did.  Then we realised that she was getting a certain amount of reaction from the other children.  Besides we already had a new child in school who had various behaviours involving spit; we did not want to inspire others!  So it was decided that whenever Vrinda got into her spitting mode we would turn her chair around and a little away so the others could not see what she was doing.

When we first start ignoring a behaviour, there is usually an upsurge in that behaviour.  Vrinda’s behaviour, too, developed in a fairly dramatic pattern.  She would spit continuously on the ground so much that it looked like a rivulet flowing beside her.

Vrinda is a child with a mind of her own.  She is also a child who has had years of button-pushing experience.  Till her parents received a diagnosis and a reason behind her unusual behaviours she spent her little life as one grand reaction-getting experience.  It was clear that extinguishing the behaviour was going to not be a brief process!

Soon Vrinda was attempting to turn around and spit, in order to be assured of an audience.  A teacher took to sitting next to her in a companionable manner with an arm across the arms of her chair.  I was still new and unused to such behaviours.  To see spit around gave me a yucky feeling.  As a learning experience and in order to help me deal with my own feelings I was assigned to sit with Vrinda and ensure that she was not out of the chair.  Soon she had progressed to spitting on my arm.  I was then advised to sit behind her and keep a light hold of her.  Through all this I had to deal with my feelings about the situation.  Interestingly, through all this Vrinda continued to respond to the group activities taking place behind her.  She would answer questions correctly.  Vrinda also loves her one to one sessions and she would be so engrossed at those times that she would forget to spit.  But as soon as they were done, she would start spitting all over again.  Given the school set-up we were not able to have a teacher free for her at all times.

There were times when having created a little river of spit on the floor Vrinda's mouth would turn dry.  She would then ask for water.  It was decided that when she next asked for water we would tell her "Water at break time." This reduced her spitting until it stopped towards the end of the day.  But the next morning it was back again, and also for a few more mornings, though with reducing intensity.  This is when her mother Indu came across something in the Parent Survival Manual that another family had tried with success.  Indu tried it at home.  As soon as Vrinda put her finger in her mouth, she was told that since she was feeling ill she could take some medicine, and she would be given a little bit of vinegar.  This technique proved successful and she almost gave up her spitting.  Indu shared this development with us at school and we trued it.  To eradicate this habit completely she was always kept busy with activities and eventually she gave it up totally.

Postscript:
We were delighted with the success of Indu's 'Vinegar Therapy'.  We have another little fellow Chinky who had returned from his village after a year's home programme and is attending the All-Day Programme at Open Door.  He still had traces of an earlier remarkable ability to produce spittle that would dribble wetly down his shirt front.  Comfortable and consistent ignoring of what was an obviously attention-getting behaviour had brought down the production of spit considerably.  We thought to give the 'Vinegar Therapy' a try in order to speed up the process.  We tried vinegar and subsequently mouthwash.  Chinky relished both and neither worked!  So we went back to our ignoring and eventually after a couple of months of consistent lack of reaction the behaviour died out.  If one can totally ignore such attention-getting behaviours I feel any problem can be tackled in course of time.

The Lighter Side: The Teacher

A foreigner on a visit to Open Door suggested to the students that perhaps one of them could teach her to speak Hindi.  As a first lesson she asked Sutirtho:
"What is the Hindi word for Teacher?"
"Ma'am, " replied Sutirtho with confidence.
Since Ma'am did not sound particularly like, Hindi, she turned to Vickey and repeated her question.
"Madam," suggested Vickey.  By now the light of knowledge had dawned on Suthirtho, and...
"Guru!" he exclaimed.  "Teacher is Guru!"
That was perhaps the nicest compliment any teacher could receive in this age of cynicism!
 

Book Review
Lekha Nair

Children With Autism:  A Developmental Perspective
Marian Sigman and Lisa Capps
Published by Harvard University Press, Cambridge, MA
1997

Most parents and professionals who work with people with autism are struck by the unique ways in which they interact with the world.  One of the questions that parents find themselves asking most frequently is "Why does my child do this?" with reference to some atypical behaviour or reaction of their child.  We are told about 'sensory defensiveness', 'acuteness of hearing, touch or smell', 'desire for sameness', and the difficulties experienced by autistic individuals in the performance of such seemingly ,automatic' everyday actions such as looking at a person's face or greeting someone with a smile.  We have also remarked upon the highly developed rote memory, artistic ability or motor skills of some autistic children, which are far ahead of what is typical for their age; but the original question "why" still remains.

The books that are available to the general reader are mostly either in the form of personal accounts by parents of autistic children or, as in the case of Temple Grandin, an autistic person herself.  Also common  are descriptions of the disorder by experienced professonals, or 'how to' manuals that describe methods by which parents and teachers can learn to interact constructively with the children and help them to fulfil their potential and cope with the various challenges presented to them because of their disorder through their lives.  The book under review is different in that it attempts to understand what autism is by analysing the behaviours, strengths and impairments seen in autism in the context of the underlying mechanisms and processes that occur during the usual course of development.  It addresses the ways in which a child learns: how external stimuli are perceived by the child, how his perceptions influence his behaviour, and the ways in which he learns to modify his behaviour in response to the reactions of people around him.

The authors of this book, Marian Sigman and Lisa Capps are researchers in the field of Child Development at University of California at Los Angeles and have made significant contributions to towards understanding autism.  Their approach comes from the idea that if the processes that 'typically' or 'normally' occur within a child's body and mind during the various stages of development are understood, we can begin to understand the aspects of development which are delayed or impaired in autism.  At the same time, the way in which elements of development are manifested in autism gives insight into the development process itself, and illuminates aspects that might not otherwise be perceived.

One of points made for instance, is the importance of 'joint attention' and 'social referencing' during almost all stages of learning.  Even infants a few months old learn to look at their care givers, to smile at them and make noises or vocalizations that have the tone and rhythm of 'conversations'.  This joint attention takes on more sophisticated forms as the child learns to share his interests by starting to 'show' or 'bring' something that he has found to his parent or others.  The child also learns to respond to the social cues of the adults in his life.  To illustrate this, they use the example of a 12 month old baby that will first point to a remote controlled toy car that it sees going by, and then look to see if its mother is looking.  By the age of 18 months, the child will, in general, look at the mother, and only if she also is looking at the toy, point to it.  Here shared attention has moved to a higher level, where the child has learned to track the other person's gaze and has gained an awareness of what the other person sees.

This behaviour is identified as a precursor to language development.  The book cites some studies that suggest that autistic children who are able to sustain joint attention ' longer may go on to develop more communicative language.

Similarly, social referencing has to do with learning the appropriate emotional response based on other people's reactions to a given situation.  Typically, young children’s reactions to an unexpected, event are based on their mother's reaction to the event.  Autistic children will typically not look at, or reference, their mother's response, but would be more likely to respond in their own way.  While this is true, it is also clearly observed that autistic children do respond to the emotions and behaviours of people around them, and this underlies many of the successful methods of intervention that have been developed in the recent past.

Social referencing continues to be a key to learning even later in childhood, and is crucial in the development of complex emotions such as pride, embarrassment and may even be related to the acquisition of executive functioning skills such as planning and judgement.

The section on language development separates the various elements that are involved in communicating effectively.  The awareness of the profound differences in meaning that are conveyed through the use of intonation, pitch, stress, context, and knowledge of the perspective of the listener, are crucial aspects of language and areas where significant impairments are seen even in very high functioning individuals with autism.  This is one area that illustrates the difficulties inherent in trying to assess the abilities of autistic children by the application of standard testing procedures.  An example of this is that of the boy who when asked, during a standard intelligence test, “What do you do when you cut your finger?” responded, “I bleed.”  While this is an accurate answer, it is clearly not the expected one!  There is an attempt to identify the core deficits in autism, to determine which skills are key to functioning appropriately at various stages of development, and the directions for future investigations and intervention strategies.

The book concludes with a review of interventions currently prevalent and presents such evidence as is available for the efficacy of some of them.  For professionals and students, as well as parents, this book is a very valuable resource, since in addition to the well-presented textual material, there are notes on each chapter with a list of references to the original work.  For the interested lay person, this book goes a long way towards helping one understand autism.

Legal Advocacy Workshops

"What do I do when my 20-year-old daughter is not allowed to operate a bank account though she is perfectly capable of doing so?"

"What secure arrangements can I make to leave money for my son to live on?"

How often are the times when we hear these questions?

Yet how many of us parents of children with mental disabilities are aware of the legal issues involved?

With the passage of the Mental Health Act of 1987, the mentally disabled were no longer clubbed with the mentally ill.  Both groups of persons have distinct needs, hence this was a step in the right direction.  However, no legislation was put in place to specifically address the needs of the mentally disabled.

The passage of 'The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995', still did not address issues such as guardianship and legal capacity as they affect the mentally disabled.  As a result, the need for legal recognition of rights of persons with mental disability acquired greater urgency.  An informed law reform initiative required a pooling together of knowledge of carers: viz. parents, parent organisations, and professionals, working in the field of mental disability. These groups were all by and large equally ignorant of the laws; and similarly, the legal representatives were by and large ignorant of the capacities and incapacities of persons with mental disability

From February to September 1997, a core group of ten NGOS, some of them Parent Organisations including Action For Autism, met and interacted in a Legal Advocacy Workshop facilitated by Dr Amita Dhanda of the Indian Law Institute, and initiated by Jan Madhyam.  Over six one-and-a-half-day sessions, participants focussed on the issues of: Guardianship and Contractual Capacity; Education and Employment, Marriage, Hysterectomy and Sterilisation; Criminal Responsibility; and Institutionalisation, as they affected persons with mental disability.

The objectives of the workshop were:  to equip participants with basic knowledge on the legal status and capacity of persons with mental disability to devise suitable legal measures to protect the interests of mentally disabled persons, to develop a paralegal support group to assist mentally disabled persons and their families themselves on issues pertaining to rights, guardianship, legal capacity, position of the mentally disabled with regard to contracts, marital capacity, criminal responsibility, etc., to develop an informed core group that through knowledge of existing laws and their inadequacies, can work for an appropriate alternative and build pressure for better legislation.

Two of the issues that emerged are that advocacy for legal rights of persons with mental disability would entail lobbying for change in legislation and the legal status of persons with mental disability is not clear.  In order to clarify their legal status some test cases could be filed in different courts in the country in order to persuade the courts to interpret the existing statutes in consonance with the fundamental rights of persons with mental disability.  The results of these test cases will help identify areas for legislative change.

A recurrent finding of workshop was that for persons with mental disability to have a full and meaningful life, there has first to be a change in attitudes and mindsets of the community.  There is a strong need to first aim at changing societal attitudes in order to reform law.  There has to be an understanding of true equality, which accepts differences between people.  True equality provides for similar treatment for similarly placed people; not similar treatment for dissimilar people.  Current policies, regulations and practice segregates persons with disability from society at large because differing abilities in people, such as the disabled, is not recognised.

Law assumes that persons either have 'no capacity' or have 'full capacity'.  A mean that considers the capabilities of persons with mental disabilities will have to be found.  Further, rather than focusing on making special laws, it will be more appropriate to adapt existing laws to the needs of disabled people.

Finally, it must be recognised that there will be a small group of very severely disabled persons who will require care and support throughout their lives.  They have a right to this care and support which it is the responsibility of the state to provide.  At the same time, people with disabilities too have a responsibility to society.
 

Update on Open Door

On 2 December 1997, the National Centre for Promotion of Employment for Disabled People sponsored a walkathon, to raise awareness for better employment opportunities for the disabled, as well as to celebrate 50 years of India's Independence.  Ten young people from the various organisations that took part in the walk were chosen to meet the president Shri K R Narayanan.  However, because of the fluid political situation the meeting could not take place, with a promise that this was just a postponement.  Each of the ten members of the disappointed delegation was asked to write a message to the president.  Thirteen-year-old Sutirtho Chakrabarti from Open Door, who was one of the ten, wrote, Autism is something that no one understands.

Earlier, in September 1997 Open Door participated in the annual play competition organised by Very Special Arts India.  As in the earlier year, every youngster from the Full-day Programme at the centre had a role in the play.  This is an event the kids all look forward to as a thoroughly enjoyable exercise, which it also is for the teachers, and feedback suggests for the audience as well.

Tamara Cohen is a name familiar in India to persons with autism and their families.  On 3 January she and Mathew Daley hosted a party at the Centre for children in the different AFA programmes and their families.  In January we were also visited by Simon Mainwaring a teacher and psychology major from Oxford.  Simon spent the day at the centre, observing and sharing.  In late February we had another visitor.  Cath Humphries is from the West Midlands Autistic Society in the UK.  Cath had been given our contact by Hugh Morgan, Chief Executive, WMAS.

On a balmy winter morning, a small comer of Nehru Park in Chanakyapuri saw a congregation of young artists busy at creating masterpieces.  Some of our young people participated in the art competition which was organised by Very Special Arts India.  Little Rahil won a consolation prize, Vickey a third prize, and Sutirtho a second prize.  Congratulations!

The senior boys have become adept at preparing material for mailing: collating sheets of information, gem clipping/stapling them together, folding and putting them in envelopes, rubber stamping envelopes, affixing address labels and postage stamps.  Lastly, a change: 'The AFA Parent-Child Training and Intervention Programme' at Open Door will now run on Saturdays instead of Tuesdays.

 

The Lighter Side: The Protector

Lack of social skills often get our children into difficult situations.  But sometimes it can have them lead others into unusual situations as well!  My son Neeraj is not socially adept with unknown visitors.  If the situation is predictable he manages rather well by opening the door and drawing our attention to the presence at the entrance…if the situation is predictable…

My colleague Sandra and I were half a floor up at the office one late afternoon.  I was working on this issue, while Sandra was writing up an assessment.  Neeraj and Boochie, our faithful mutt (who is justifiably infamous as the dog that welcomed a burglar into our home at two a.m. one morning) were downstairs in the apartment.  The former listening to music, and the latter making music out on the terrace for the benefit of passing canines.

At one point we noticed that the barking had grown in volume till it was frenzied and intense.  We ignored it as Boochie’s paean to a passing stud.  However, after a while the barking was so intense, frenzied, and high that Sandra decided it was interfering with her concentration and she went down to give the dog a piece of her mind.  To her surprise, she found the apartment door wide open.  She walked in and found Neeraj alone in his room doing his own thing.  She headed towards the terrace and the barking, and was brought up short by a stranger.  Arms held out in the manner of someone who had a gun pointed at his head, one hand clutching his bag, the other trembling uncontrollable, and Boochie at his shin with bared fangs and menacing bark, was a gentleman from a company who had come to see us on official work.

What had transpired was that he had come to see us and rung the apartment bell.  Neeraj, very hospitably, opened the door to him.  “Is Mrs. Etc. in?” asked the man.  Though I was not in the apartment but up in the office, technically I was ‘in.’  ‘Yes,’ replied Neeraj, opened the door wide, and disappeared into his room.  The unsuspecting official entered the apartment, turned round and was summarily chased, cornered and immobilised by the mutt.  By the time Sandra discovered and rescued the poor man he had spent a good ten minutes of eternity praying fervently that his shins made no contact with canine canines.

Puzzling as Boochie’s behaviour appeared in terms of the norm, somewhere in her dim doggy brain she knew that while the rest of us were better equipped to deal with intruders, Neeraj required that little extra protection.  And she did her duty by him.

Helpline

Q. I have been facing a lot of problems with my daughter, age 9 years.  Her physical growth has started. (It is earlier than other children of her age.) She has become very moody and throws a lot of tantrums.  In between she was ill for 15 days during which she was given an antibiotic course for ten days.  During that period she wouldn't have her bath, wouldn't let us comb her hair, and would scream in general at everyone.  I find myself helpless at such times when no amount of explanation or tempting can make her have her bath or comb her hair, even when going out.  Even after her illness, she doesn't want to have her bath and comb her hair on holidays.

Another problem I face with her is that she is very negative towards me.  She will say, " Mummy, you don't give me milk, let the servant give me the milk." Whenever she is upset she goes on repeating, "Mummy, you go away." Formerly she was very fond of going out.  These days she is all ready to go out, but at the last moment she will say that she wants to go out alone and not with everyone.  Please suggest ways to handle the above behaviours.

A.  Your letter describes a situation that many families with teenagers and children going through puberty face.  As you must be aware, any regular child at this age begins to look for areas of control; situations in which they can have their own way.  Many children also have difficulties in behaviour and management.  It seems to me that what you describe is quite clearly your daughter's desire for control over her world.

Right now, more than at any other time, your daughter is finding it very difficult to understand the puberty-related changes in her body and the accompanying see-saw of emotions.  Every person goes through phases of being up and down and these phases are marked in people with autism.  M cannot control these changes and the way they affect her, and so she needs to find some areas of control.  If you recall, at the training workshop it would have been discussed how control over one's own body is the ultimate control that no one can take away.  What M is doing is essentially exercising this control.  If she does not bathe, or does not want to brush her hair, this is after all her way of asserting control, and maybe we could accept that.  Also, like many people with autism who periodically go through phases of heightened sensitivity, brushing her hair or bathing mighehave been painful at that point of time.  If we can let her have her way, with comfort, she will be much more willing to revert back to doing what you want her to do.

In another instance she keeps saying she wants to go out, and when you are finally ready to do so, she says no.  She is basically looking to see what you are going to do, i.e. if you will go against her.  Most often what we tend to do is to react with, "What?  You said you wanted to go out!  Now we are ready, so we have to go".  What you could do, is be prepared for her to say 'no' and if she does, then say "Okay, that's alright, we'll stay back", and go back in; or say "That's okay if you don't want to come.  I think I will go out anyway".  The more you can be comfortable about her wants, the easier she will be to deal with.  M's behaviour is akin to that of most pre-teens and teens.  The difference is that non-autistic youngsters have social skills and therefore keen to have the approbation of others.  This does not apply to someone with autism.

M is slowly moving into her teens and she is going to want a lot more privacy and personal space, so if at times she asks to go out alone, maybe she is actually wanting some time alone (which is something we all want at some time or another).  We realize that sending her out on her own may not be a safe possibility, so you can provide her an alternate place and time where she can be undisturbed, a place she can be alone.  This is not something personal against you, it is just a normal part of her growth.  Perhaps the most important thing to remember is that her behaviour is not directed against you even though it may appear to be.

This is a phase that can continue to ebb and flow through much of her teens as it does with every child; but it is also a phase that will eventually pass.  Please always remember that there is no one way of dealing with any situation.  You will need to find different ways of working around this negativity without going directly against her.

Q.  'Developing Appropriate Eating Habits' by Sandra Dawson is a useful article.  My son, Abhilash, 9 years old, used to eat only curd and rice until two years back.  Now he eats a variety of foods like chappatis, fish, chicken, etc.  But the problem is that he just swallows without chewing.  What he swallows is mostly preparations like idli, dosa, rice.  But he chews chapatis, chicken, biscuits, wafers, nuts, etc. and eats them well.  But he never chews rice, idli or dosa even when we tell him many times.  When insisted upon he will just show an exaggerated chewing action and swallow it.  Our problem is how to make him chew all his food before swallowing.  Also he is particularly fond of eating salt, coffee powder and sugar, tea leaves and sugar.  Often when we are watching TV or taking a nap he raids the kitchen for these.  I do hope Ms. Dawson can suggest some solutions.

A. I am glad you found the article on Eating Habits useful.  These are suggestions that have been tried and have worked with a vast majority of children and young adults.  It's great to hear that Abhilash is now eating all kinds of food and that is something that you have probably worked at and that is commendable.  I would just like to comment on a couple of things you have mentioned that are bothering you.
a)  He chews chapatis, wafers, etc. but only swallows idlis, dosas, etc.
b)  When insisted upon he will make an exaggerated chewing motion and then swallow.

To begin with, maybe you want to sit back and evaluate objectively why it bothers you.  If, despite swallowing the food, he does not have any digestive difficulties, then the best alternative would be to accept that as "just something he does." The texture of the foods mentioned are clearly different and it is possible that Abhilash feels comfortable swallowing rather than chewing some of these.  This could be because of a sensory sensitivity.  It might also be a coping behaviour.  By insisting on chewing you are giving the behaviour unnecessary attention and maybe creating a certain amount of stress, which is best avoided.

Many times children adopt habits that are coping strategies but they turn into attention getting behaviour when given too much attention.  So maybe you want to just let the swallowing be.  If you do, be consistent about it.  Also, eating all kinds of food is a fairly recent change and you do not want him to lose this behaviour, which he might if he feels forced.  A lot of autistic people often favour unusual combinations of eatables.  The plain coffee powder and sugar, etc. seems like a good example.

If you want him to stop,
a) IGNORE it if you see him with it. (ignore ALL undesired behaviour and PRAISE all desired behaviour.)
b) Put a lock on the cabinet in which these items are kept.  If he communicates his wants, you can have one specific time in the day when you give him a bit of the desired item. (Salt and sugar may do no harm, though coffee or tea may not be a good idea).  At all other times you just tell him once, "Time to eat salt is in the morning", (or whatever time you have decided on.) and do not pay any attention to a protest.
 

Letters to the Editor

I found the article on Challenging Behaviours in Autism Network December 1997 very useful.  The guidelines are practical and relevant to every day situations.  It is very important to mean what we say and to be consistent.

BR
Nagpur

My younger brother has two sons and the eldest son is ten years old.  He has autism.  He always does the opposite of what we tell him and he is frequently complaining of headaches.  Initially, we put him in a school for mentally retarded children.  Presently he is going to a regular school.  But se doesn't write A, B, C, D or 1,2,3 or anything.  If we force him he writes reluctantly.  He never sleeps in the afternoon.  Because of his over-activities, he gets very tired by 7 p.m. and does not eat his dinner.  It is very difficult to make him sit in one place.  He always plays with screw drivers, scooter parts, etc.  He does not bite the food that he eats, he just swallows.  We are quite worried about him.  He has a younger brother who is three years old.  He is normal and sometimes he imitates his elder brother's mischievious behaviour.

Geeta Krisnana
Pune

I am writing you because I have an interest in the eunuch community in your country.  I heard on a radio programme that these males are rude to people but are said to be lucky and are seen at wedding.  I believe, but you may know if it is true, that before the eunuchs have the operations to remove their genitals, they may have a hormone imbalance disorder called Kleinfetter's Syndrome.  A genetics doctor told me that there is a vast pollution problem in India and that estrogen (female sex hormone) may be responsible for these males having this male sex hormone (testoterone) deficiency.  Kleinfetter's Syndrome gives males small genitals and makes them sterile and gives them breast tissue and a womanly body (pear) shape.  The skin is smooth too.  I am telling you this because I have Kleinfetter's Syndrome and also I have Autism/Asperger traits.  I believe that eunuchs could be helped if the authorities in India helped them.  Is Hormone Replacement Therapy available in India?

Doctor Simon Baron Cohen, a top psychologist with an interest in Autism, is doing research into a possible link between autism and Kleinfetter's Syndrome.  If you know of a support group in India for males with Kleinfetter's syndrome, would you please send me their address so that I may write to them?  It is being reported now in England that the fish called roach is changing gender because of estrogen pollutants in some English rivers.  Some male fish have eggs in their testes.  Their testes have become ovaries.  I hope this letter is of interest to you and your group.  I have no wish to be a woman or a eunuch.  I am on testosterone therapy.

Tom
U.K.

Ed:  Readers who want to respond to Tom's interesting letter can write care of Action for Autism.  We will forward all replies to him.

I am 25 years of age and have Asperger Syndrome.  I would like some Indian penpals.  My tasttes in music are Reggae, Ragga, Rap and Ska; plus Michael Jackson and David Bowie.  I am also a big fan of XTC.  The places I go to are Birmingham, Sutton, Coldfield, etc.  I like street furniture, transport, the British Royal Mail, music, etc.  Is there anyone who would like to be my penpal because I love writing letters.

Nigel
U.K.

Ed:  Readers who want to be Nigel's penpals can write care of Action for Autism.  We will forward all replies to him and Nigel will get back to you himself.

Announcement

Action for Autism will be producing a Calendar showcasing the artistic talents of individuals with autism.  Please send in any artwork you would like considered for this project.  Submitted works should preferably be on A4 size paper, but we do make allowances for individual preferences.  Each artist can send as many artworks as she/he wants to.  Please include a small photograph (optional) and a three sentence biography of the artist.  Do not fold the artwork.  Mail flat.  The deadline for receipt of all artwork is 30 June 1998.  All submissions become the property of AFA and can not be returned.

Mail the original artwork to:

Bindu Badshah, Art for Autism
310 Asiad Village, Chandagi Ram Block
New Delhi 110 049