N E T W O R K

December 1997 Vol. IV, No. 3

Page One

Welcome to the winter issue of 1997. By the time this issue reaches you, we will have just finished our Second Annual Awareness and Fundraising Concert in Delhi. This year, we are excited to be premiering a 15 minute short film on autism that has been produced with a grant from the Royal Danish Embassy. We hope it will do much to raise awareness and understanding of autism.

In mid-October we concluded five days of parent and professional training workshops at the Indian Social Institute in Delhi, now an annual fixture on AFA's calendar. We were fortunate to have the Lieutenant Governor Delhi, Shri Tejinder Khanna inaugurate our Professional Training Workshop. It is encouraging to know that we have the support of his excellency for our work. We have included more information on the workshop elsewhere in this issue.

Readers will enjoy learning more about the artist of our cover this month, Sutirtho. In addition to Sutirtho's interest in drawing, he also enjoys music, eating out, and meeting new people. We hope this will encourage parents and other carers to send us write-ups about the interests, special talents and hobbies of their charges to share with our readers. This will help us all gain an insight into the minds of these special people.

In the last issue we began a series on encouraging appropriate eating habits in young children with autism. This issue carries the second of the three part series, and focuses on teaching children to eat independently and increasing neatness at meal time.

Impairment of social and imaginative skills is a well-known feature of people with autism. The article on Parents & Play suggests ways that caregivers and educators can change their play skills to more effectively communicate with their children.

This issue, we introduce a new feature, The Lighter Side, inspired by the many moments we have found ourselves clutching our sides with laughter at a funny predicament one of our kids has created. In fact, one of the things that helps most parents cope with life with an autistic child is being able to see the lighter side of situations and laugh along with their child. This issue, we reintroduce readers to Indu and her daughter, 6 year old Vrinda, who we first met in Vol. III, No. 3. We hope you enjoy reading about Vrinda and her obsessions, and we ask parents to write down a few sentences about their own humorous situations and please send them to us for future issues!

We are also pleased to carry an article by Ramon Dekkers, from The Netherlands. Ramon has worked in Amsterdam with high functioning children in a residential setting, and brings with him a wealth of experience of structured settings. In his article, he shares with us both his personal experiences and discusses the importance of communication in dealing with challenging behaviours. Ramon is volunteering at Open Door for five months and has been a great friend and teacher for the older boys.

We wish all our readers a joyous holiday season and a very happy and peaceful New Year.

My Brother
Jimanshu Patel, 10 years

My brother, Oh! My brother
Can’t he just stop;
Just for a day, Just for a day
Can’t he stop it?
Oh! Why, Oh why does he
Have to trouble me?

But, when he makes
That little face like me;
I have to admit,
He is the best BROTHER
In the whole UNIVERSE.

Jimanshu has a brother, Vivek, age nine, who has autism.
 

Autistic Children in The Netherlands
Ramon Dekker

The tiny European country of The Netherlands, better known as Holland, is famous for its tulips, windmills and dikes. But also in The Netherlands, just as in India and every place else in the world, there are children with autism. I'd like to share with you a little about my experiences with autistic children in the Netherlands and now here in Delhi, as a volunteer teacher at Open Door school of Action for Autism.

In the Netherlands, autism has been recognised as a disorder for quite some time, and as a result, there are a lot of places where these children can be taught at specialised schools and institutions. There are facilities for both high functioning children with autism and as well as for autistic children with mental retardation. I worked as a group leader in a residential facility with children who were higher functioning. The children live at the centre and go to their parent's home for one weekend every two weeks. Most of the children were residentially placed because the situation at home was too difficult to deal with for various reasons.

In the institute where I worked, the children live in a house on the grounds. In this house they have their own rooms, and there are facilities which normal houses have, such as kitchens, bathrooms and so on. During the day, the children go to a special school, also on the institution's grounds. What is interesting to me is whether a child is higher or lower functioning, it is surprising how similar the behaviours of children here in India are to those in the Netherlands. For example, several of the children I have met so far repeat the same words or talk about the same subject over and over again. I have seen children make similar movements and noises, and arrange toys only in a line or some kind of order instead of really playing with them. Actually, the only real difference I have seen between autistic children in India and autistic children in the Netherlands is the fact that the autistic children in India don't speak Dutch!
 

Update on Open Door

In their production unit, the older boys at Open Door have been discussing concepts such as profit and loss and money transactions. To reinforce these, we held a small Diwali sale of decorated earthenware pots and diyas on 29 October. The boys conducted the sale with help from the teachers, and completely independently, one acted as the shopkeeper, collected money and made change. Following the sale, the boys received money based on the amount of work they had contributed, excluding the cost of the materials.

We have restructured our program at Open Door to allow more opportunities for parents to receive training. For the past three months, we have been offering one-hour sessions for parents of children and adolescents in Delhi. The focus of the hour is guiding parents on how to improve communication, socialisation, and other skills of concern to parents. As these sessions are parent training, we require at least one parent to be present for the full hour every session. If you live in Delhi and are interested in this program and would like more information, please contact Tini at 5190953 or 5415893.

In early December, the National Centre for Promotion of Employment for Disabled People is sponsoring. a walkathon to raise awareness to celebrate World Disability Day and the 50th year of India's Independence. Students of Open Door, their families, and other friends of Action for Autism will be participating in the walk, and we hope the participation will bring attention to the need to include autism among any discussion of disabilities.
 

Review of Parent & Professional Workshops

After several months of careful planning, the morning of 14 October had finally arrived. This year, AFA held a three-day workshop for parents, followed by a two day workshop for professionals. In all, we met sixty parents (and a few grandparents!), and sixty-five professionals, including a mix of special educators, therapists, clinical psychologists, and others from a wide variety of experiences. The topics covered during the two workshops were similar, but with different emphasis depending on the earlier requests of participants. The areas covered in the different sessions included: What is Autism and How it Effects A Child, Learning to Accept the Child, Communication, Challenging Behaviours, Teaching Methods, Social Skills, Sensory Defensiveness, Self Help and Independence Skills, and Adult Issues.

One session of the workshops involved exercises to sensitise participants as to how we may neglect to treat children with a disability with the respect they deserve. We encouraged participants to discuss how it felt to be the "person with autism" in a number of scenarios to encourage us all to change our beliefs and actions.

As last year, we again arranged child-care for families attending the workshop who had no place to leave their children. This year our volunteers had thirteen young charges to keep them busy with their very individualistic ways! One added component for parent participants was small group discussions. We divided by the age of the child one day, whether the child was verbal or nonverbal the next, and by sex of the child on the third, in order to give parents the chance to talk with others with similar children.

At the conclusion of each workshop, participants filled out an evaluation sheet to help us determine what topics to focus on in our next workshop. The evaluation sheets revealed that many parents, and much to our pleasure, a high thirty-five percent of professionals, considered the session on Learning to Accept the Child the most valuable. This was a session to help participants view the whole situation from a different perspective. For parents, the emphasis was placed on the importance of moving beyond the stage of wishing the child is not autistic, and focusing on what can be achieved. As one of the parents who spoke on the topic explained, "A parent with a disabled child loves that child, but they hate the disability. They accept their child, but they don't accept the autism. So you have to accept the disability as well, because you cannot separate the autism from the child." For professionals, it commonly occurs that when a professional begins working with a child with autism, the aspects that are foremost in their minds are the child's challenging behaviours and the difficulties in teaching them, since their job is to "fix" these. This session helped them see that a child with autism behaves a certain way because of the way the autism affects him, and therefore, to take a more holistic approach to the child and his behaviours. Also, the importance of respecting children and recognising that effective teaching will difficulties parents may face to be able to view the child as a person with reasons behind the things he or she does and not judging their behaviours.

Other sessions the parents found the most useful included teaching Methods, where we focused on specific strategies and techniques to use with people with autism and teaching self-help skills and handling challenging behaviours. Professionals most frequently commented on the session on sensory defensiveness, where we focused on how a child's unusual behaviours may be related to an overload of sensory stimuli, and the session on learning to accept a child. From the AFA perspective, we were satisfied that the five days were productive and useful, and most of all, enjoyable for all who attended, and we have already begun to plan for next year!

A Parent View
Dr. Pradip Kumar Jain

I attended the workshop for parents of autistic children organised by AFA and Open Door from October 14-16, 1997. It was a very enlightening experience sharing the views and experiences of other parents of about 60 autistic children of different age groups. They had come from far and wide- as far as from Dibrugarh, Trivandrum, Chennai, and Dehradun. We could share our understanding and modalities of management. Many ingenious ideas came up during the workshop which we could relate with our own experiences with our children. In the intervals between different lectures many parents spoke eloquently about the challenges put forth by autism and how they were meeting those challenges with their knowledge, skill and determination to bring their autistic children to acceptable levels of social behaviour and improving their academic, social and behavioural standards.

The lecture schedule was meant to give us many guidelines for managing our children while the group discussions were meant to give us and get from us practical suggestions about individual behavioural problems. Ms. Merry Barua, assisted by her able special educators at Open Door, has done a marvelous job of conducting this workshop and bringing together so many parents of autistic children and providing them with a forum for discussion and mutual self-help.

The lodging arrangements were excellent. The special feature which I liked was that while we attended the workshop, our children were being taken care of by volunteers of Open Door school, leaving us free for our deliberations. In all, it was time very usefully utilized to get a better understanding of our special children. We are now better equipped to deal with them and to manage their behavioural problems positively.

In our informal discussions, many spoke of the lack of awareness of autism in the public in general and the plight of our autistic children in particular. The Government of India is not according our children various concessions due to them as mentally handicapped persons. This Government apathy could stand corrected if we, as parents, were vigilant about the rights of our children. Many of us feel distressed since we are not united and our solitary voices are being drowned in more vociferous campaigns of other pressure groups. Through the columns of this newsletter, I invite ideas from other parents on how we can devote our energy toward this cause. I propose we start branches of this organisation in various cities to fulfill our desired purpose of an effective platform to raise our voices and to increase awareness in public and to educate them about AUTISM.

Dr. Pradip Kumar Jain
Birla Sarvajanik Hospital
Pilani- 333 031

A Professional View
Usha Rao

Where do I begin
To tell you the story
of how sweet love can be
The sweet love-story…

Yes, working with special children is a story of love that grows. As a special educator, one works with children who are disabled and especially at our early intervention centre, when we see little babies growing in all areas, one feels content.

Autism has always interested me, but lack of information and methodology on working with children with autism always held me back. Often, I felt that I was not doing justice. We have had a few children coming to our centre, but with special education methods we could only work on some skills and feel unprepared when it came to handling behaviours and emotions.

"Open Door" –literally did just that. The Action for Autism and Open Door workshop for professionals on 17th and 18th October 1997 was very informative. One never ceases to learn in this field. This workshop had people with hands-on experiences as the speakers, and I feel this is a very good way of exchanging information. The members of workforce at Open Door spoke of their experiences and I could relate to them as their language was very straightforward.

We have a couple of children at our centre with mild autistic behaviours. The information given on the approach to teaching methods, especially the use of individual working trays and schedules, finish baskets, the left to right approach, and breaking up an activity with very specific targets made a big difference. We have been able to attain a very satisfying degree of success in the responsiveness of the children and it has made the sessions very satisfying to the child, the parent, and us.

As professionals, we tend to lose track of some simple things. Hearing success stories reinforces ones confidence and involvement. Thank you to you all at Open Door and Action for Autism. Thank you also to my young special friends. You have always been teaching us and as a result, we come nearer to reaching you.

Comments from participants about the workshop...

"The workshop was very educative, reassuring, and a sea of knowledge. I go back much wiser and sure of myself." (a parent)

"It was a wonderful experience. Now I know I am not alone. Hats off to those of you who are not only helping your own, but other children as well." (a parent)

"It was a truly rewarding and illuminating experience. Apart from the high intellectual content, professional experience and expertise, the practical arrangements were more than efficient. Whatever was said was founded on actual and dedicated experience of handling autistic children. There was an admirable absence of vague and evasive abstract theories that tend to dominate academic discussions on the subject." (a parent)

"I had a wonderful experience. My child is very young and I was not clear what autism is. But now I am more relaxed and know what to do for my child." (a parent)

"It was a very well-structures, useful workshop. I got a lot of encouragement from meeting so many parents who are also going through their child's autism." (a parent)

"I have been seeing autistic children for a year and this has helped me deal with the attitude part of it." (a professional)

"A wonderful experience. The setting was comfortable and informal, and the presentation was lively. I am going back to my institution well equipped with relevant information about dealing with autistic children." (a professional)

"The workshop gave me more clarity about the type of intervention needed with families of autistic children." (a professional)

"This workshop has helped me and made me rethink my belief system and made me realise that it is necessary to remain comfortable instead of becoming tense when things don't go the right way." (a professional)

"Presentation were simple to understand and practical day to day experiences." (a professional)

"We enjoyed sharing, discussing, and learning about various aspects of autism. We also liked planning the teaching activities." (a professional)
 

The Lighter Side: Water Tanks and Shoes
Indu Chaswal, New Delhi

Vrinda's current obsessions are with shoes and water tanks. For the past seven or eight months, she has been fixated on shoes. In fact, we don't have a shoe rack in our house anymore because all our shoes and slippers are either on Vrinda's bed or next to her bed when she's sleeping. She's very particular about the number of shoes she has and whether they'll be taken away, though she doesn't take very good care of them, like she'll give them a bath sometimes. Her other obsession is with water tanks. This started from the school, because there is such a huge one right outside. All her drawings have water tanks, and every chance she gets, she wants to have a look at that water tank outside the school. Even when she goes for a drive, she's constantly looking for a water tank, and the moment she's found one, she happily screams "Yeh tank hai! yeh tank hai!" or "wahtah tank!" and will keep watching until the tank is out of sight.

One day after school, Vrinda quietly sneaked out. First I went to the terrace where she has a good view of the tank, but I didn't find her there. But then without thinking, I knew she could only be at the tank. I ran to the tank, a big compound with the tank in the middle. I was at the entrance and observing her. What I saw was Vrinda walking all around the tank with her face tilted upwards, with a twinkle in her eye, saying, "Yeh tank hai! Yeh tank hai!" On her feet, I saw was that she was wearing shoes that were about her size, but not hers. I guessed that she had chosen them from the huge pile of shoes and slippers lying outside the house next door, since a religious ceremony was going on, so I quietly put them back and we went inside. Vrinda had managed to combine her two favourite things into her own private little outing. And since then, her drawings of water tanks now have two new features that she could only see from inside the compound—a little staircase, and windows with pigeons sitting. But actually, she hasn't drawn the pigeons yet!
 

The Importance of Communication in Handling Challenging Behaviours
Ramon Dekker

Imagine yourself on your way to buy a new outfit, and full of excitement you enter the shop. While walking around you see outfits similar to the one you are looking for hanging on a side rack, so you move to get a closer look at them. As you pull out one of the outfits, the shopkeeper walks up to you and tells you in a particularly unfriendly way, "No, no! You're not allowed to touch these!" and then leaves. Since he hadn’t mention a reason why shouldn't touch, you decide to try a different rack and pull out another outfit. All the while, you can feel the shopkeeper's eyes on your back, watching. Indeed, when you turn around he’s staring at you and now he hurries over to you. This time he’s looking very serious and almost threatening, as he tells you "I already told you, Ma'am, that it is prohibited to touch any of these outfits, so stop it now!" Irritated, frustrated, and confused, you leave the shop in a bad mood and decide to go to another store, vowing that you'll never go back to this particular shop again.

Several comments can be made about this situation. The first is about the way the shopkeeper reacts to the customer's actions. He is not very friendly or helpful, the way the customer expects, and he is even a little rude. When the shopkeeper tells the customer not to touch the outfits, he offers no reason or explanation. Since pulling an outfit off a rack is something that seems very natural, and the customer doesn't understand the reasoning, she moves to a different rack and thinks perhaps those outfits might fall under a different set of rules. Again, the shopkeeper reprimands the customer, only this time he says it in a much more accusatory tone. Another point relates to how the shopkeeper follows the customer everywhere she goes, how every movement is being watched. It is an uncomfortable feeling for the customer. Essentially, the shopkeeper is waiting for the customer to disobey his instructions, and when she fulfills this expectation, he is ready.

I don’t mean to say that carers of autistic children are like shopkeepers and their children are misbehaving customers. I used this example to put the reader in a position to let him feel the effect of unclear and ineffective communication. My child might do all kinds of things which can be viewed as misbehaving and undesirable: he may shriek very loudly when his favorite TV programme starts, he may grab the hair of a guest who has just arrived, or he may pay no attention to how dirty his clothes have become over and over again. All these behaviours, and the many others, can often become the focus of one's attention, sap one's energy, and cause miniature battles between the carer and the child.

Eliminating challenging behaviours can be a slow and multi-stage process, and this article is only to emphasize one aspect of the process: the importance of clear and precise communication. Changing the way we communicate with children can have surprising effects on their challenging behaviours. Therefore, it is useful to keep a few points in mind when dealing with our children:

Stress the positive versus the negative
As any parent or professional has discovered, telling a child "no" or don’t touch that' seems to have no effect, and at times, increases the behaviour. The assumption usually is that the child will cause some damage or come to some harm by pursuing the activity. For example, I am visiting a friend with my child and he wanders around the room, picking up a glass object off the table. Chances are I would say, 'No, don’t touch that! You'll break it'. I also am likely to keep responding this way in different settings. Despite the repeated admonishment the behaviour does not diminish. And chances are that one day the child eventually will drop the glass object and shatter it. What happens when I say 'Don’t break it,' 'Don’t tear it,' 'Don’t throw it' is that I often give ideas to the child that he never had in the first place! It is far more effective to give a positive response such as 'Put that down' or 'Give that to me'.

Emphasize what you want the child to do rather than what you don't.
Instructions given in the negative are confusing for a child to understand. For example, your child enjoys holding out his hand and letting it brush against people passing by. Perhaps he enjoys the tactile stimulation. Perhaps it helps him to deal with sensory bombardment as he walks down the street. When we tell him 'Stop it. Don’t do that,' we make the situation more stressful by not providing any information to him about what he should do instead. Two easy responses could be telling the child 'help me carry this bag,' or 'hands in your pocket.'

Prepare a child for changes.
Children with autism are known to have difficulty in changes in routine and habit. Not surprisingly, challenging behaviours often occur around these times of transition, such as moving from one activity to the next. If a child knows what is coming next, resistance to change can be lessened to a certain degree. Parents have found an effective way of preparing their child is by sitting down in the morning and explaining everything, i.e. "First we will drop Nina at school and then we will go to Auntie's house, and then we will stop at the shop, and then we will come home and have lunch." Since children with autism often process visual information better, writing the day's plan or using pictures to represent the activities may be more effective.

Say what you mean and mean what you say.
A situation that commonly occurs involves having a child wait. For example, you are planning to go for an outing, but are momentarily busy and you tell your child, "one more minute, then we'll leave." Your child comes back after a while, and so you tell him, "Go play with your blocks and then we'll leave." Again, the child returns after a few minutes, and you tell him, "Yes, yes, two more minutes and Papa will be ready," and then the fourth time, you tell him, "We'll just eat some nice biscuits and then we'll go." When you offer your child the plate of biscuits, he yells and spills the whole plate on the floor. What happened? One possibility is that you have told "one more minute and then we'll go," and did not follow through not once but several times.

Avoid negative phrases in front of the child, always.
Nobody enjoys being spoken about in a non-positive way, and doing so insults a child's intelligence and integrity. Even phrases such as "this child troubles me all day long!" or "I can't do anything because of him" will eventually erode our children's self-esteem and may be a precursor to some challenging behaviours.

Mind your language.
Often times when we want a child to do something we say, 'Will you clear the table?' or 'Shall we play ball?' To the child with autism with a literal understanding of language, he is being given an option: to clear the table or not clear the table, to play ball or not play ball. However, when the child exercises what he views as an option and chooses to say "No,' we are upset at not being obeyed and might even insist that the child follow through. Such a situation often sparks off behaviour that we eventually label as challenging. Therefore, we want to be very clear and specific when making requests: 'Please clear the table'; 'Let us play ball'.

Be consistent about what we want and what we don't.
When I am not consistent, my child may not understand why I let him do one thing on one day and forbid him the same on another day. For example, I forbid my child from playing with the day's papers because he messes up the pages. But on days that I am exceptionally busy I let him do it because it keeps him occupied. Here the child is getting extremely conflicting messages. Is he allowed to play with the paper or not?. He may get far more confused by these messages than one realizes, and in his confusion, challenging behaviours may be his way of expressing himself.

Avoid reprimands.
Use rules and guidelines that are consistent. An example: Rather than tell your child, "I've told you a hundred times not to take sweets from the store before I've bought them!" try saying, "The rule is, wait until Mama has bought the sweet."

Unlike others, children with autism do not know how to draw attention to themselves in socially appropriate ways. They compensate for this and learn to meet their needs through unwanted behaviours. Therefore, communication is even more important when my child when he is not "misbehaving." When a child is sitting quietly, even for a minute, our instinct is try not to pay the child any particular attention. However as soon as soon as he does something we don’t want we are quick to draw attention to that. Yet how will a child know that sitting quietly is the desired behaviour if he is not praised when doing it, when he gets no attention for it? Stressing the positive, and stating what you wish your child TO do, rather than what you DON'T want him to do, is probably the most effective way of communicating with children with autism. When you place emphasis on the positive behaviours of your child, you will also find that the general mood of your home becomes far more pleasant for you and your child.

Portrait of The Autist as a Young Man

If our cover this issue looks familiar to you, it may be because the well-known British autistic artist, Stephen Wiltshire, has also done a sketch of St. Basil's Church. However, "Russian Church" is by 13 year Sutirtho, who lives in New Delhi. Sutirtho and Stephen Wiltshire both enjoy drawing buildings, and they both draw in a similar way: rapidly, fluidly, and not seeming to be distracted by others around them. Recently, our editor managed to catch Sutirtho for an interview. Printed below are portions of it, transcribed verbatim for our readers to learn more about our autistic artist and his interests.
 

ED – Hi Sutirtho. I'd like to ask you a few questions about your drawing. Would that be okay?

SC – Yes.

ED – What do you like to draw?

SC –I like to draw a white church and a gurdwara.

ED – Anything else you like drawing?

SC – I don't like to draw a mandir as much. I like to draw a gurdwara and church.

ED – What about people? Do you enjoy drawing people and faces?

SC – No, I like drawing a church.

ED – Do you enjoy drawing faces? I've seen some beautiful pictures of faces that you have drawn.

SC – I like to draw gurdwara and church.

ED – Sure, and what about the faces that you draw?

SC - No, I don't like.

ED – Really, or are you joking?

SC – I will draw gurdwara and church.

ED – Okay. Do you like to draw with crayons, black pencil, or do you like paint? What do you like? Do you enjoy drawing with paint or crayons? What do you enjoy drawing with?

SC – I will draw gurdwara and church.

ED – Do you enjoy drawing with colours or black and white?

SC – Colours.

ED – You enjoy colours. What kind of colours do you like? Do you like water colours or oil colours?

SC – Water colours.

ED – You enjoy water colours? But most of your drawings are done in pencil. Why is that? You do most of your drawings in pencil, don't you?

SC – Yes.

ED – Would you like to paint them with colours also?

SC – Yes.

ED – You would?

SC – Yes.

ED – Okay. And--

SC – Cadbury Dairy Milk, I like the chocolate.

ED – I'm talking about your drawing.

SC – I like the Cadbury's Dairy Milk.

ED – What are your other interests, Sutirtho? What are the other things that you really like?

SC – I like Cadbury's Dairy Milk.

ED – Sure. What are the things that you like doing ? Like music?

SC –Cadbury's Dairy Milk. Can I now get a Cadbury's Dairy Milk?

ED – What do you like to do with your free time?

SC – Cadbury's Dairy Milk.

ED – You like Cadbury's Dairy Milk?

SC – Yes.

ED – Maybe I'll buy you one

SC – But I don't like Break. [another type of candy bar]

ED – Will you answer my question? Then I'll get you a Cadbury's Dairy Milk.

SC – Yes.

ED – Would you like that?

SC – Yes.

(later)

ED –Tell me, in the drawings that you do, do you like to draw from other pictures, or do you like to see something and draw it?

SC – I draw from my mind.

ED – From your mind? You see something and then you have it in your mind?

SC – Yes.

ED – Do you see a picture and then hold it in your mind, or do you see an object and then hold it in your mind?

SC – Both of them. Picture.

ED – You see a picture and then hold it in your mind. I see. Suppose you saw an object, would you be able to hold it in your mind and draw it?

SC – No.

ED – Why? Look at it carefully and then draw it. Seen it? Okay, now draw it. [Sutirtho draws] That's wonderful! That's perfect! You can see an object and hold it in your mind and draw also. You mostly do it with pictures, do you?

SC – I'll switch off the fan.

ED – Okay. Thank you so much for sharing all these things with me, Sutirtho. Maybe we can talk again later on. What do you think? Can we talk again later?

SC – Yes.

The Lack of Playfulness Between Parents and Children
from Communicating Partners, Summer 1997

As most parents are aware, autistic children often (but not always) lack socially appropriate play behaviours. When we suggest to parents to play with their children, parents sometimes respond by insisting, "but he's not interested in playing with me! He'd rather keep playing with the same piece of string he always carries." This article addresses this difficulty by suggesting ways that parents and professionals can learn how to play with their children and develop communication skills at the same time.

Reward the Smallest Steps
Before many adult can get to the point of easily accepting play as valuable, they need to overcome another problem—expecting too much. Many parents and professionals do not find the child’s small steps as rewarding as the pace an adult would prefer. It is easy to forget to reward the child for things that you do not find rewarding in themselves. Unfortunately, without rewards for even the smallest steps, the interaction may stall and the child may learn nothing new or learn only to stay away.

Show Interest and Enjoyment
Just as with adults, when we do not show enjoyment or interest in what a child does, we may be actively discouraging the child from continuing that activity, or worse, from valuing it himself. Few children will involve their adults in play if they realize those adults do not enjoy it; consequently, many valuable learning interactions will be lost.

Avoid Stressful or Task-Oriented Activities
Children operate with many of the same rules adults do. Like us, they avoid stress and failure. Activities that focus more on adults’ goals and difficult talks are likely to result in two potentially serious problem. First, they may reduce the child’s freedom to explore and communicate his own intentions. Second, they may lead him to see adults, in general, as something to avoid rather than join. Play that produces stress or results in more failures than successes is more punishment than play.

Focus on Fun- Not "Right" or "Wrong" Play
Children develop best along their own small, evolving steps. When we face them with our views of right and wrong, such as when we urge a child who is just beginning to talk to use adult articulation or when we encourage a toddler to play with a toy in a specific way that is too difficult, we face the danger of creating failures for them and discourage them from interacting with people. The notion that there can be only a "right" or "wrong" way to play or do things often deters the child who is not yet ready for the whole thing. For example, an adult who asks a child to build a complete bridge when the child is only ready to stack a few blocks.

Respond with Spontaneity
Too often adults act as though children learn only when adults teach. If adults and children do not unite spontaneously, they might miss the best motivational times for learning. If a child is discouraged from acting upon his own immediate interests as he senses them and if his contact with adults is too structures, he will lose interest and learn less. Adults have often told us that they believe they must continually be teaching or directing children with delays. They fail to see how much learning happens on the run, when both the adult and the child spontaneously hit upon a common awareness ("Look at that silly man!") or activity ("Oops, let's clean it up!")

Play in the Same Activity
The kind of play relationship your child needs is one in which each of you is clearly playing with the other, not only at or beside the other. The two of you must attend to each other and respond sensitively to each other's actions. Do not be satisfied merely to be playing in parallel, with each "doing his own thing". As an adult, you will be able to build on what your child knows if you share the child's experiences. For example, as you build a bridge of blocks, you could "play at the child" by stacking the blocks and telling him what you are doing. Or you could "play beside" him by working one side while he makes the other. In contrast, to be actively together, you could place a block, wait for him to place one, and continue responding to what the other does. Again, we do not mean specific games as play; you can be most effectively playful by incorporating play as a part of all kinds of contact. The more you and your child are attending to and doing the same thing, the more you will have shared experiences. Then those shared experiences will help both of you to "read" each other and do things that fit the other's interests and abilities. Consider any activity as if it were a topic of conversation. The more each of you are actively into the activity, the more easily you will build.

Play as Your Child Does
Consider anything safe that your child does as play, and then be as much like him as you can. It may seem embarrassing at first, so try it alone with the child for a while. You can show him new things, of course, but be sure you do them in ways he can do now. Think of play activities as your child's first conversations, only without words. Just as you want adults to stay in the same conversation with you, you will need to stay in some of your child's activities with him so that the two of you eventually have something to communicate about.

Play As Much or More Than Talk
Adults are often more in the habit of talking than playing. At first your child will learn more from your childlike play than your talk. This seems very difficult for most adults, who think their job is to "tell children what to do". We thought so too, but now we have learned that we get much more from children if we play more and talk less. Playing with your child will show you what makes the most sense to talk about with him. When adults talk, they often do so from their distant world of thoughts. When you play closely with your child, your talk is more likely to be understood and motivating to him if it focuses on his world; and that means, he will be more likely to learn from you.

Be More Interesting than Your Child's Distractions
Most children are going to seek stimulation, and understandably so. They often prefer stimulation that allows them to interact and get results, instead of stimulation they cannot control. Novel and interesting changes also engage them. Ask yourself: Are people or things more stimulating to my child? A child's lack of attention to an adult may well relate to how interesting he finds that adult. Since you want your child to communicate, a major task is to learn to become more interesting, at times, than things. Just as your child must stay and play with things to learn about them, he must also stay with people to learn to communicate. We recommend that adults be animated and let the child have effects on them as he does on toys. The more you are a flexible toy to your child, the more he is likely to learn to act and communicate like you. Compete with the objects in his world; do not let wood and metal and cloth win over you. He needs you more than he needs them; they will not help him build communicative relationships.

Guidelines for Childlike Play

Start with anything safe and socially acceptable that your child does.
Watch what he's doing first.
Then quietly join in his activity.
Keep your talking down and your actions and sounds up; in fact, being silent may sometimes help you both focus on the play.
Try to be like your child. Move when he moves, sound when he sounds.
When in doubt as to what to do, imitate your child. You will get his attention and may start an interaction going.
When acting like your child, change what you are doing slightly, then see what he does.
Give him time to do things on his own.
Be sure you and he are in the same activity.
Try to do only about as much as your child does; remember to balance your actions and his.
Make yourself more interesting than the things that distract your child. This means being inventive.
 

Developing Appropriate Eating Habits, Part II
Sandra Dawson

In the Vol. IV, No. 2 (August) issue of Autism Network, we discussed how food is an important part of the culture of most Indian families and therefore eating habits are one of the biggest concerns of parents and caregivers of autistic people. We also mentioned how in many situations, mealtimes have become a negative experience for both parents and children, where the child often is forced to eat and may resist until it becomes virtually impossible to feed him anything. But this need not be the case with any child because we can teach them to enjoy eating, and eat appropriately, despite the difficulties they have or the social pressure we feel to have "well-fed" children. Those of you who have begun to implement the suggestions we made earlier may be ready to take the next step, which is to teach the child to eat on his own. As always, we want to emphasize that these steps are not a formula to be rigidly followed one after the other. Parents and caregivers will need to use their discretion to decide what level the child is at, what he is able to do, and follow on with the steps to train him in his eating habits.

Before we continue our discussion of teaching appropriate eating habits, we want to mention that the eating habits of Indians are far more varied than we really think about! Families also use different ways of eating foods that are considered socially appropriate. For example, the obvious difference is that some families use a fork or spoon, while others use their right hand for eating. Regardless of utensils or hands used, some foods are designed to be eaten with, for instance, by tearing a piece of roti, paratha, puri, or other food and using that as the eating implement for carrying other food to the mouth. Some dishes, such as curd rice, require mixing of two different foods with the hand. As you read the following suggestions, keep in mind whether the majority of foods your child eats will be with a utensil or with the hand, and what is the first type of food you want your child to master.

When the child is sitting comfortably for 10-15 minutes at a stretch, begin to teach him to eat by himself. Here we use the ‘hand-over-hand’ method. In fact, this is a method we use to teach almost any fine or gross motor skill when the child’s imitative abilities are limited. Stand behind or at the side of the child. Mold the child’s hand over the utensil or his fingers over the food in the appropriate manner, and carry out the motions required to pick up the food piece and carry it to the mouth. Carry on doing this each and every time anything is eaten.

After doing this consistently over a period of time, depending on the child’s motor abilities —there is no predetermined length-, you should start to feel the child making more of the motion and your hand needing to do less,. Begin to release your grip on the spoon, fork or fingers about 2 inches from the child's mouth. Remember not to release your grip completely. Very gradually, begin releasing your grip over the child's at further distances away from the mouth. Prompting the child with gentle pressure on the hand or simply guiding the hand toward the food and the mouth with only your fingertips will be sufficient soon. It is important to fade the prompt gradually. If the child gets too used to the prompt he may not eat until he is prompted and that will again create complications at feeding time. Fade the prompt from touching the hand to touching the elbow and then perhaps shoulder, and then not at all.

What may occur once you start fading the prompt is that the eating may become untidy and a lot of the food may be spilled or dropped. It is extremely important that you continue to remain comfortable. Do not let the mess distress you because you can work on the neatness of eating once the child is able to use his own hand or the spoon to feed himself. Remember, we want to focus on one aspect at a time, and at this point the focus is independence not neatness. Once the child is able to feed himself with a certain amount of comfort then, as the next step, we can focus on neatness as the goal is to get the child to eat independently.

When the child is feeding himself with ease, the focus can shift to ‘neatness’. One of our children in school had the habit of picking up a piece of the food, breaking it in two, eating one piece and throwing the other on the floor. Another young man we know finishes his entire meal in less than five minutes because he stuffs his food in his mouth rather than swallowing before taking the next mouthful. Many times families want to take their autistic children out to restaurants and special events, but the potential messiness is too much to cope with and so the situation is avoided. The good news is that we CAN teach our children to eat neatly. Once more, in teaching neatness too we want to focus on one aspect at a time.

Structure the environment
To teach a child to eat neatly, we have to first structure the environment such that the opportunity to create a mess is minimized. Place the child in a position where food cannot fall on his lap or the floor by pushing the chair right up to the table so that the body is almost against the table. Use a large plate to serve and a shallow spoon so that the food slides easily into the mouth. Some parents have found that children are able to eat better from a bowl. Give small portions, and let the child finish what is on the plate before putting more. Clearly, if the plate is overfilling with food, there is more chance for the food to fall. Also, make sure that the bites of food are small. When a child if given a large bite of food, he becomes used to that amount of food in his mouth. This is often what creates the habit of a child stuffing huge portions of food into his mouth at a time.

Teach the child to use only one hand to eat.
Using one hand sometimes cuts messiness in half! Unless it is roti or some other similar food item, instruct the child to "use right hand," if he is right handed. If your child is left handed, and you are comfortable with having the child use his left hand, you will most likely find that this is better than forcing him to use the right. Each time the second hand goes toward the food, gently move it away and repeat the instruction. Again, consistency is necessary to make progress here. Keep repeating the instructions and assist the child physically until he is used to using one single hand a single to eat. If the child finds it difficult to remember to keep one hand down, you could try having him place his hand in his pocket or under his thigh. Never use force!

Stay alert and focused.
It is much better to catch the hand before it throws something than to try to deal with the situation after. If food is thrown or dropped, make no mention of it. When food is thrown intentionally for the sake of gaining attention, have the child to pick up every last bit from the floor, remaining comfortable, and using very clear and precise instructions, "Pick up." However, in some instances, the child may enjoy the process of picking the food up, and then naturally, you would not want to use this method.

This second article has focused on helping our autistic children to eat unaided and neatly. In the concluding article, we will cover some last remaining points. If you have any specific questions that you want to make sure are included, please feel free to write to us and we will do our best to include these as well.

Letters to the Editor

This issue, in place of our regular letters, we carry a sample of the mail we received after an article about autism appeared in the Hindu in July. In sum, we received more than eighty letters from parents and family members of persons with autism, persons with autism themselves, and professionals and other interested persons requesting more information. The responses came from throughout India, many parents commenting on the similarity of the behaviours described in the article to their own children. We also received several letters from adults who felt they themselves may be autistic, which is how many high functioning adults first become diagnosed. Therefore, although awareness of autism in India is still relatively low for the number of children, adults and families affected by the disorder, we are optimistic that there is clearly a growing recognition of the ways in which autism differs from other developmental and mental disabilities. Excerpts from some of the responses appear below.

"This has reference to an article in the Hindu, 13/7/97. My child may be developing symptoms similar to those of the autistic child. He is a male child, 2 years, 10 months. His memory is very good. He can recite rhymes and alphabets with nouns. However, he cannot communicate clearly...he screams at times irrelevant things...he is moody and very troublesome when eating and sleeping." -A parent from New Delhi
"My son, Amit, is 3 years old. He is unable to communicate his ideas. I suspect he is suffering from Autism." -A father in Kodur, A.P.,

"I have read the Hindu article [and] I have every reason to believe that my son aged about 12 years is autistic. I would be grateful if you kindly send me more information about Autism." A father in Nazira, Assam.

"I am the mother of an autistic girl aged 30. As a matter of fact, none of the doctors we had consulted had diagnosed her complaint as autism. She was termed mentally retarded. Recently I had read an article on autism and realized that my child was autistic...we have very little useful information on training methods for autistic children. I would be very grateful if you could send me some guidelines on training and handling autistic children." -A mother from Madras

"I have read the article in the Hindu of 13/7/97 and I have a feeling that I have a grand-daughter who has all the characteristics mentioned in the article for autistic individuals. Please let me have any information regarding the treatment of such children." -A grandparent in Vishakapatnam

"My relatives are misunderstanding my behaviour and act [as they] consider me a mentally retarded person. I don’t mind, it is my relatives views...but I am clear I am only affected by autistic problem. Please send more details." -An adult in Tamil Nadu

Early morning TV viewers may have also caught news of autism on 'Good Morning India' when Star TV met several parents of autistic children in Delhi on November 26th. We hope this recent publicity will increase awareness not only among parents and professionals who work with people with autism, but also at the national level among policy makers.

Helpline

Q. My eight year old son Rahul always laughs when other children cry. This habit is very disturbing to his mother and the parents of the child he is laughing at. How do I teach him not to laugh?

A. This is a comment we often hear from parents. We also have parents say that they have felt frustrated when they have hurt themselves and their autistic child doesn't even seem to notice. This apparent lack of empathy is very much related to the way autism affects a child. Keep in mind that autism is largely an impairment in social communication; people with autism often have difficulty interpreting facial expressions, gestures, and other forms of non-verbal communication. In addition, we know that people with autism often are unable to take the perspective of another person, called the "theory of mind." Therefore, try to understand what is happening from Rahul's perspective: he sees his cousin standing in the middle of the room with "water" coming from his eyes, making strange faces, and loud noises. All the while, his cousin's face is turning more and more red and he starts to jump up and down. Perhaps this scene even looks funny to Rahul, and he laughs. You may think, "but Rahul understands what crying is! He uses it all the time when he doesn't get what he wants!" However, remember that Rahul may not be associating what he does with what another child does, since he likely has an inability to put himself in their position. If he is confused at all, he becomes anxious from his lack of understanding, and begins laughing, which may well be a sign of stress. In fact, it commonly occurs among all people that upon hearing terrible news, or when something bad happens, the person begins laughing instead of crying.

Avoid making comments such as 'don’t you know how he feels?' or 'how would you like it if he laughed at you when you were crying!' Instead, try to teach the appropriate social behaviour by explaining what is happening. You can start by telling Rahul that when you see a person doing this, it is called crying, and these are called tears. Explain that people cry for different reasons, but usually, it is when they are sad or in pain. Model the appropriate behaviour for him, and you could try role playing to let him practice. Also, explain to the parents of the other child something like, "Rahul isn't laughing at your son because he thinks it is funny that he is hurt. Rahul has trouble understanding that crying is a way people show they are unhappy or in pain" so they understand, as well.

Q. We have a daughter who was diagnosed as autistic at the age of four way back in 1970 and since then we had the benefit of consulting many psychiatrists and psychologists. She has been taking haloperiodol (Hexidol, 1.5 mg. tablets 3 times a day along with Parkin, 1 tablet) for the past seven years. We have been reading some books on Autism and with the rapid strides that have been taking place in brain research of late, some doctors who have authored books on autism are of the option that more than drugs, our conduct towards autistic children and our acceptance of them as normal makes a difference and raises their self esteem. In fact, some authors advise discontinuance of haloperidol after some years due to its bad effects. We shall be grateful if you would kindly let us have more information particularly on the continued use of drugs like haloperidol for the whole lifetime.

A. First of all, as you may already know, there is no medication to treat autism. Medication is used only to treat specific symptoms of autism, and as you accurately have pointed out, it is also very controversial. Many of the drugs given to autistic children in India are unnecessary and may actually worsen the problem by making the child sleepy, less active, and less alert. The psychiatrist who prescribed this medicine should have told you exactly what symptoms Hexidol was supposed to change. Then, you could observe your daughter and see if there is a positive change, and if so, you may feel the negative long term effects are justifiable. But if parents don't ask, many times doctors do not adequately discuss this information with parents and it is possible that inappropriate medication may be given.

As an organization, we advocate that parents try other methods of dealing with their children's behaviours (other than seizures) before using medication. However, if you are considering discontinuing medication, you must do so very gradually with the consultation of a doctor. Drugs such as Hexidol are extremely powerful and should not be suddenly stopped. Incidentally, you are absolutely correct about attitude making an enormous difference in the progress of an autistic child.

One other note. Many parents have confided that they are unsure how to approach their psychiatrist with regard to discontinuing medication. Some parents have worried that the doctor will disagree or become offended, especially when the medical profession is so respected here in India. What you want to keep in mind is that it is your child who is to receive the medication and you have every right to decide whether you want your child to continue with the medication and share your decision with your child’s doctor. One researcher who interviewed over a hundred families of autistic children in India found rather alarming dosages and prescriptions being given, as well as dangerous combinations of drugs. It is important to continue to read as much as possible yourself about medications and autism, so you can make informed decisions about your daughter's treatment.
 

A Very Special Thank You to The Royal Danish Embassy

This year Action for Autism was able to conduct training workshops for both parents and professionals. This was made possible with financial support from the Royal Danish Embassy. The fund has also allowed AFA to produce a short film on what is autism, which will be used to create awareness among the general public. While the initial version of the film is in English, we plan to shortly release a Hindi version, as well. Subsequent films in the series will cover specific topics such as improving communication skills, teaching methods, and others. Additionally, the Royal Danish Embassy fund has enabled the organisation to invest in some much-needed office equipment.

We take this opportunity to thank The Royal Danish Embassy, and in particular Siv Damgaard-Larsen, Kirsten Broager, and Margaret Jensen for their interest in and support for our work. Thank you!

Thank You Elizabeth!

We are grateful to U.S. author and mother, Elizabeth K. Gerlach, for her generous donation to our resource centre. Ms. Gerlach is the author of the well-known, comprehensive resource guide for parents and professionals, Autism Treatment Guide, published by Four Leaf Press and revised in 1996.