Autism Network, August 1997

N E T W O R K

August 1997 Vol. IV, No. 2

Page One

The monsoons are with us and so is our second issue of the year. In this issue we carry a very interesting article by Charles Hart on the frequently used term of Pervasive Development Disorder (PDD) that is used to diagnose a child with an autism spectrum disorder. Hart grew up with a brother who has autism and is the father of a young boy with autism.

Certainly the situation in India is somewhat different from that in the US. Here when the family is advised, “Your child does not have autism, only PDD”, they are usually given to understand that it is a mere developmental delay that would ‘sort itself out ‘ with time. In the process the family lose valuable time as it delays the parents learning about appropriate intervention techniques to help their child. This kind of situation is more common with the more able child with autism. What we have to remember is that even the more able person with autism requires specialised intervention. In fact the earlier in the child’s life this happens, the better the possibilities of mainstreaming.

In India, food is a major issue in most families. If my child is fat then I am a good parent A slender child is believed to denote lack of care. With such social pressures it is not surprising that in most families with an autistic member eating difficulties is an area of deep concern. This issue carries the first part of a series on teaching appropriate food habits to a child with autism.

The AFA Workshops on autism take place in October as they did last year. This year there are two workshops, one for parents, and one for special educators and others who work with children. More details elsewhere in the journal.

Three parents from Action for Autism visited Denmark at the invitation of the Autism Society Denmark. The study tour included visits to various facilities: schools, adult workshops, adult residential units providing us an opportunity to interact and share with some very dedicated and innovative professionals. Some of the professionals: extremely knowledgeable and experienced were yet very keen about observations about their system from these three visiting parents!! All in all a unique experience.

Developing Appropriate Eating Habits, Part I
Sandra Dawson

We live in a very demanding world. A world that expects us all to cope with ever-changing rules, standards and norms. As children growing up, we learn to identify cues that suggest we act a certain way, to be socially appropriate. We learn to satisfy physical and mental needs by communicating them to our parents or caregivers. We learn how to deal with physical difficulties by asking and finding out what is bothering us and why. Sometimes there may be some difficulties in habits and behaviors that children outgrow as they develop physically, mentally, socially and psychologically.

People with autism are different because they have a social and communication impairment. This along with other things may present a difference in the development of their eating habits. Eating a very limited diet, difficult behavior during mealtimes, having to be fed, not sitting to eat, eating only junk food and eating untidily; all these are only some of the challenges that parents and caregivers have to face.

A person who is coping with autism may take much longer to outgrow these habits and change them to socially appropriate ones. Some with extreme rigidities about change and extreme sensory sensitivities to textures, smells and tastes of foods, may need to be taught in a very specific and systematic manner to make it easy for them. Their eating habits are one of the major concerns of parents and carers of autistic people. In many situations mealtimes have become a negative experience where children often feel forced and may resist more and more, until it becomes virtually impossible to feed them anything. Very often we become the big spider that scared Little Miss Muffet, by forcing them to go through an unpleasant experience.

What we really need to do is remember that the child is trying, and whatever little effort he makes, even taking one bite or sitting for a few seconds, must be cheered and praised like the conquering of Mount Everest. Recognize this to be just a small step in the progress of his eating habits. We want to try our best to make each mealtime happy, relaxed and fun for the child.

When we begin to teach a child to eat, we want first to put our desires and wants into perspective, focus on what we want right now for the child. We may want the child to eat varied foods, to eat on his own, to eat decently and neatly and to sit and eat. It is good to want these things for our child, but if we’re going to aim for all these things at one time, the possibility of achieving any one of them is reduced. This is why focusing our attention on what is more important is necessary. Ask yourself, ‘What do I want for my child right now?’ And before you arrive at the answer consider the fact that you are helping him organize his world, as much as possible. It would therefore be better to teach him eating habits in the sequence that would be most structured for him.

One suggestion is to focus first on teaching him to SIT. To do this, begin by keeping mealtimes very short, and decide on fixed times for meals. Completely cut out nibbling on biscuits or other goodies between mealtimes. This will help ensure the child is really hungry and desiring food by mealtime. Also, decide on one place to sit and eat: at a table, or wherever the family usually sits to eat will do just fine. This will help act as a cue that mealtime has begun. Set the food out so that when the child comes to the designated area, everything is ready. Instruct the child in simple clear terms “Time to eat. Come.” Guide him to the eating area and prompt him to sit. As soon as the child sits, praise the sitting in a big way. Let the applause be highly enthusiastic and different from the regular ‘Good Boy’ that we might say. Then, let him pick up his food. If the child is used to being fed, then go ahead and feed him, because we don't want to forget our target - getting him to sit- and not anything else. Intersperse your conversation with praise for the sitting. The child may pick up a piece of food and get up and walk away. At such times immediately remove the food from his hand, and placing it back on the plate say ‘Sit and Eat’ - ‘You want to eat? Sit,’ always stressing the word ‘sit’. When he comes near the plate, quickly lift him or prompt him into the chair and praise the sitting. With bigger children, hold the plate out of reach until the child has sat.

It is very important, if you ever want this lesson to register, for the child NOT to get the food unless he is sitting. Keep repeating this if necessary each time the child gets up. Very soon, he will get the message that if he wants food at all, he will have to sit. Importantly, no negative comments should be made at this time or any other time, in the hearing range of the child. Comments like ‘If you don’t sit you won’t get your food’ or other such negative statements must be avoided. Stay positive in what you say. ‘Sit’ or ‘Eat’ is usually enough. Again may we stress that comfort is necessary. When you remove the food from the child’s hand or are trying to get him to sit again, it should be done in a very matter of fact way. If frustration or stress is present, it will be sensed immediately by the child and the chances of him sitting or eating may reduce. So stay comfortable.

One child we know started with eating namkeen, right through the day. As the forcing stopped and comfort and acceptance came in, the child began to eat a little of so many other foods. Today he loves to eat dosas and egg and rice and dal. He tries different fruits and raw vegetables in salads. We have come across quite a few children who have thrived on only rotis and curd, or coconut cookies and namkeen mixtures for months at a time, and have now grown into healthy young people. The earlier the child learns appropriate eating habits, the easier his life and the lives around him are going to be when he is older.

In the beginning give your child a small quantity of food that he likes very much. . It may just be a single type of biscuit only glucose or only coconut cookies, or even one kind of namkeen mixture. It doesn’t matter what the desired food is, use it. The chances that he will eat it, are so much higher if a) he is hungry and b)if he likes the food. Also if the quantity of food is small, it finishes with a few bites, allowing the child an opportunity to complete the activity, and giving him a sense of accomplishment. This will possibly work to make him try harder next time.

Be prepared in the initial stages for the child to even skip a meal or two, off and on. It may seem a little heartless but children, more often than not, know better than adults how much food their bodies need. Along with being accepting and comfortable it is very important to be consistent and persistent. This is something we have repeated in many articles before this and is equally important in developing appropriate eating habits.

As time goes by and you remain very persistent and consistent in your reactions, and instructions, the child will learn to sit for longer and longer periods. Very naturally, as parents and carers we also want the child to learn to eat other foods, less liked foods, but those that provide a balanced diet. So if the child is sitting for at least 8-10 minutes at a stretch, you can now begin to slowly introduce new foods during meals. Again start with extremely small amounts of a food that is eaten on and off. A square centimeter of bread, or a teaspoon of rice, or curd and dal. Whatever you introduce to your child, please do remember to consider his sensitivities and preferences. If dry foods do not agree, begin by introducing wet foods or vice versa. Always praise or cheer. Whenever the child eats something outside the preferred list, praise enthusiastically. Encouraging a balanced diet can be a long process, and it may take from a couple of months to a few years. But in later years when the child is eating all kinds of foods the effort you have put in now will be well worth it.

We have only been talking about the first step in teaching an autistic child to eat. In further issues of the journal, we will discuss how to teach other things like eating on their own, eating neatly, and getting over particular dislikes. For those whose children are still at the first stage, we would like to suggest that you try this and see if it works. We’re sure that this will be of some help to you.

Relationship-Building for Students with Autism
Karen J. Christof and Steve R. Kane
From Teaching Exceptional Children

Editor's note:
At our counseling sessions with families, at our workshops, and also our training our teachers, we have been repeatedly stressing the importance of not making assumptions about the behaviors exhibited by a child with autism. One prevalent belief that we encounter frequently is that behaviors are a result of conditions in the immediate environment. From our work, we know that this assumption is often faulty. Another prevalent belief is that all so- called self stimulatory behaviors are harmful and must be stopped. We believe that such behaviors can have a communication intent. We are happy to share with our readers this article by Christof and Kane from TEACHING EXEPTIONAL CHILDREN, that elaborates lucidly on the above and other points, and takes it further into the area of building relationships for children with impaired social skills.

Impaired social relationships have always been considered the definitive feature of autism. Yet, only in recent years has it been recognized that individuals with autism can and do develop sustained social attachments. Now it is possible to consider their capacity for interpersonal relationships as a source of therapeutic gain in the educational setting. The relationship between teacher and student creates natural reinforces that motivate the child to learn. This article provides strategies for building relationships in the classroom.

Behavior as communication:
In recent years, there has been a shift in focus from the form that autistic behavior takes to the function it serves, based on the recognition that every behavior regardless of its outward form, is inherently meaningful. Even such atypical, socially inappropriate behaviors as echolalia, self-stimulation, and self-injury can serve communication functions. The behavior might indicate a request, a response to some-one's presence, or simply the identification of something familiar.

The functional meaning of behavior cannot be understood on the basis of objective observation alone. Inferences must be drawn from an assessment of contextual variables. For example, a child's sudden repetition of a cooking commercial in the grocery store may mean " I want cookies" or "This is the place where cookies are sold" whereas the same echolaliac utterance in the classroom could mean " I'm bored", " I can't do this", " I'm hungry", or any number of other messages. An adequate interpretation of this behavior would require an analysis of the whole behavioral ecology- the interactions among the child, his or her behavior, and the social and physical environments. An analysis such as this, which account for variables that are not easily quantified, extends far beyond the traditional behavioral focus on immediate antecedents and consequences.

Functional analyses of behavior have revealed that, although children with autism have impaired social skills, they can develop relationships with others. It has been found that these children seek comfort and interaction more from family members than from strangers. Such findings stand in contrast to the popular image of the autistic child as being aloof. When behavior is observed in its natural context and in light of its function, the child with autism can no longer be seen as an asocial being.

The capacity of social relationships has not yet been recognized as a valuable resource in the education of individuals with autism. For the past two decades, the emphasis has been on managing discrete behaviors. Behavioral training procedures were founded upon the assumption that each behavior is solely as a response to conditions in the immediate environment. More recently, applied behavior analysis has been expanded to include the consideration of communicative functions and ecological variables. Nevertheless, the continued reliance on adult-directed activities, which place the child in the role of responder, often hinders spontaneity and the emergence of social interactions.

Precise behavioral technologies may be necessary to reduce problem behaviors that are extremely disruptive or potentially harmful. However, the results of such interventions will be impermanent unless time is also spent on developing alternative behaviors based on the learners natural strengths. Positive programming has been defined as a gradual educational process that is based on a functional analysis of the presenting problems and involves the systematic instruction of more effective ways of behaving. It recognizes the need to decrease maladaptive behaviors while simultaneously facilitating the development of appropriate ones.

Positive programming begins with relationship-building. In fact, the development of relationships is an essential but often unspoken component of all good teaching in order to have a working classroom, the teacher must develop a rapport with students based on mutual understanding and trust. Every teacher will find certain children easy to like and work with but others more difficult. To shape a class as a whole, however the teacher must build relationships with all students. As a result, they will become motivated to meet the teachers expectations. The relationship will become as reinforcing as any reward used to manage behaviors. Difficulty in relating to people is one of the most obvious and crucial deficits in autism. Yet, as in normal development in autism the child's awareness of self emerges with awareness of others. The development of relationships should be considered a cornerstone to the child's entire education. In some cases, the bond may remain on a rather primitive level, with the caregiver meeting the child's primary need for food, warmth, and comfort. But in most cases, a rapport that is mutually interesting and enjoyable will develop over time.

Strategies for the development of relationships:
Students with autism present a particularly difficult challenge, because they interact in atypical ways. The process of building relationships takes longer and must involve many of the students unusual behaviors and interests. The following strategies can facilitate this process.

Understand what motivates the student. Search for clues to the meaning of behavior. Be aware of physical state and health needs. Observe the people and things that interest the student, and try to understand what it is about them that draws his or her interest. Take note of what excites the student, what causes anxiety, fear, or frustration. Test the validity of your conclusions against your observations.

B displayed ritualistic patterns each morning. Even taking his coat off and hanging it up could take as long as an hour. B would repeat each step in the process until he seemed satisfied with how it was done. B's teacher noticed that the intensity of ritualistic behavior decreased around the same time of day that the effect of his medication wore off. What appeared to be a characteristic of autism was in fact a side effect of B's medication. Focus on the students strengths. Don't focus on problem behaviors. What you attend to will influence how you will feel about the child as well as the child's own self-concept. T exhibited a range of behaviors during group activities. At times, she would leave the group to run around the room. But she tended to join the group for singing or language-oriented games. T's teacher chose to attend only to her positive interactions with the group and to ignore her disruptive behaviors.

Recognize the behavior is communication. When a child is unable to complete or participate in an activity, it does not mean that he or she is being bad or non-compliant. The child may not understand what is going on, maybe tired or bored or just be unable to concentrate on the task. Even when an interpretation of behavior cannot be found, the potential for communicative content can be recognized. R screamed with different intonations in different situations. A high-pitched shrill consistently indicated a ear infection. Many other screams indicated frustration with difficult demands.

Approach the student on his or her terms, in non-threatening ways. Parallel the student's spontaneous action - whether it is spinning a coin, tapping a rhythm, or singing a jingle. This will give way to directed turn-taking, and eventually reciprocal interaction. With more passive children, arrange the environment (e.g. during a snack). M preferred to spend his time lining blocks. When interrupted, he would either move away or become aggressive. M's teacher approached him by sitting near him and playing with her own blocks in a similar way. This gave M the opportunity to accept her presence without feeling threatened. Later, she varied her play in order to draw M's interest and model new skills.

Give the student control with a structured situation. This will help establish the give and take of the relationship. Control is often provided in the context of a choice. Be careful of how the choice is worded. The options should be distinct and meaningful to the student. Make sure he or she has the time needed to process and respond to the choice. With students who are unable to make choices, follow their lead when preferences are spontaneously expressed. Let them determine the course of the interaction. When asked an either/or question, O could only respond to the last choice she heard. Her teacher avoided this dilemma by presenting O options visually and allowing her to choose.

Promote the student's sense of self-worth. Be willing to modify a task or even give it up. The objective is to help the child feel competent in doing something and that doing it is worthwhile. The student's self-confidence will contribute to the stability of the relationship and to the experience of learning. Encourage the student with praise. Use clear and simple verbalizations and a good deal of body language. Express his or her own pride as in 'You must feel good about that', instead of 'I'm so proud of you.' P could meet complex demands, but he had a low tolerance for frustration. When P became anxious, his teacher would adjust the demand and ask P to do a little more before putting his work away. In that way, problem behaviors would be avoided and P would leave the activity having experienced some success. Help the student learn the acceptable limits. This contributes to relationship-building by promoting a sense of security and predictability.

Be calm but firm when setting limits. Avoid feeling personally challenged by the child's disruptive behavior. A would become aggressive when other children were upset. Sometimes it would be necessary to hold her physically. At such times, the tension in A's body would quickly give way to a posture of accepting comfort. A's aggression appeared to be an expression of fear. She eventually learned to ask for additional support from additional staff.

Be aware that the student may attempt to relate through negative behaviors. The child who appears unrelated, may in fact be initiating interactions, in inappropriate ways. These may be the only means available. Establishing positive alternative means will diminish the need for negative behavior.
When C first came to school, his only means of approaching people for attention was to bite. His biting decreased when other means of greeting, (e.g. 'give me five') were learned.

Conclusion:
Each relationship will have its own unique characteristics. The strategies discussed here are not intended to be exhaustive or mutually exclusive. No one strategy for developing relationships can be isolated. Teachers of children with autism must take enough time to understand their students and give the students the opportunity to accept them. The gradual process of positive programming is achieved most effectively when founded upon a sincere relationship between teacher and student.

References
Donnellan, A.M., Anderson, J.L. & Messaros, R.A. (1984) An observational study of stereotype
behaviors in proximity related to occurrence of autistic child-family interactions. Journal of Autism and Developmental Disorders 14, 205-210.
Donellan, A.M. & Kilman, B.A. (1986). Behavioral approaches to social skill development in autism. In
Schopler, E. & Mesibov, G.B. (Eds), Social Behavior in Autism (pp. 213- 236) New York: Plenum Press.
Donellan, A.M., La Vigna, G.W., Negre Shoultz, N., & Fassbender, L.L. (1988). Progress without
punishment, Effective Approaches for Learners with Behaviour Problems. New York: Teachers College Press.
Donellan, A.M., Mirenda, P.L., Mesaros R.A., & Fassbender, L.L. (1984). Analyzing the communicative
functions of aberrant behavior. Journal of Association for Persons with Severe Handicaps, 9: 201-212.
Sigman, M. & Ungers, J.A. (1984). Attachment behaviors in autistic children. Journal of Autism and
Developmental Disorder,. 14, 231-244.
Volkmar, F.R. (1987). Social development. In D.J. Cohen & A.M. Donellan (Eds)
Handbook of Autism and Pervasive Developmental Disorders, pp 41-60. New York :Wiley.

Autism Conference, Philippines
Sandra Dawson

In April this year, the Autism Society, Philippines held its Third National Conference. We had the opportunity to attend the same as representatives of Action for Autism. This visit to the Philippines was sponsored by the Danish Council of Organizations of Disabled People. During the 10 day long trip we attended the conference, visited schools, centres, institutions and had talks with various members of the ASP, as well as other professionals in the field of disability.

'Autism Intervention Beyond Expectation' was the theme of the three day conference. Most of the people in attendance were parents of autistic children. There were also professionals connected with the disability, such as pediatricians, occupational speech and physical therapists, teachers and special educators, both contributing to as well as receiving from the conference. The programme was essentially a seminar where they combined updating everyone on the progress of facilities, research and know-how across the world, with workshop sessions in which they shared methods of actually dealing with children of al age groups.

The sessions tried focusing on as many aspects of autism to uncover the complexities of the disability. Topics were divided under main heads, some of which were social skills. Using sensory strategies, How motion differences affect Autism, and Speech therapy. During the conference, attendees were updated on various kinds of therapies available for the disabled child, so that parents would have the knowledge of these and professionals could recommend them if necessary. The different aspects of special education- its need and requirement, the processes and input involved in planning for individual children (Individual Education Plans), vocational training and the use of computers with autistic children were presented through various talks.

Of special significance was the session on the use of sensory strategies for behavior commonly seen by an occupational therapist. It is interesting to note that all over the Philippines, as in many parts of India, most professionals separate the various therapies available to children with disabilities like speech therapy, occupational therapy, and sensory integration therapies. Not all kinds of therapy are available at a particular centre or facility, which inconvenience families financially and otherwise. This speaker spoke of strategies involving a holistic approach which were suggested to be more effective. We visited the centre at a later date to watch her effectively combine these different therapies in a manner similar to the way Action for Autism does to create individual programmes depending on the need of each child.

Along with various objectives, it is the long term goal of the ASP to set up a nationwide network of local chapters in cities and regional centres. So far the society has eight chapters and there were representatives from six of these chapters sharing their progress, as well as needs of local people.

The theme of the conference was thought -provoking, but rather broad based, because it brought into the picture so many different aspects. The conference also tried to touch on each aspect of intervention. Some subjects were covered completely and gave the listeners a clear perspective on what the disability was about, but there were also some subjects that the speakers could not do justice to either due to lack of time or the fact that the topic (such as certain therapies and strategies) may not necessarily be useful for autistic persons.

One of the highlights of the conference, however, was the time when families shared strategies that they had adopted, that had worked. They encouraged people to build support groups of parents and siblings and whole family support systems. There were representatives from two different sibling support groups. Siblings shared what it felt like to have an autistic brother or sister- the fun they had, as well as the difficult times. Many people were particularly touched by the fact that to children even a disabled child can be 'just another' child if adults are accepting and encouraging.

We had the opportunity to meet and talk with them later on and saw how it was still easy for them to talk and laugh and be themselves because of a very positive attitude. For some of them, of course, it had taken quite a bit of encouragement to get up and share their feelings. At the end of the conference there was a general feeling of satisfaction that was shared by almost everyone, a feeling of achieving something, an assurance of moving one step ahead.

As compared to our country, there is a much higher level of awareness of autism. This is perhaps due to the small size of their country, but it would be unfair not to give credit to the ASP for the amount of very hard work they have put in over the recent years to build awareness and bridge the gaps between knowledge and ignorance.

It wasn't just at the conference that we saw this kind of positive and onward movement. Later on we visited different schools and centres and saw that this was reinforced. The first centre we had the opportunity to visit was KAMPI. Its expanded form is in Filipino, which translated means 'Federation of Persons with Disability in the Philippines.' KAMPI is an umbrella organization that sets up cross-disability self-help groups of disabled persons. It aims, of course, at improving the lives of people, and has a few of its own rehabilitation centres for this purpose. In addition, KAMPI develops programmes and generates and mobilizes resources. We visited two of its centres, one of which also catered to autistic children. Their results so far have been encouraging and positive.

We also visited the Able Centre, which is run by Anna Lisa Yap, who has been mentioned before. We spent a lot of time there and we were especially encouraged by their willingness and openness to give and receive information. Teacher-Mom is another school that works with all age groups and functioning levels of autistic individuals. It gets its name from their main objective, which is to train mothers to be teachers for their own children. They demonstrated their ways of working with a couple of children. It was a pity we visited Philippines during their summer vacations, otherwise we would have been able to see many more schools, because the ones we did visits also did not have regular classes on; just a few children were in and out occasionally.

The Learning Centre is a small setup that works solely on molding adult autistic individuals and equipping them with enough knowledge to be able to get up and hold a job. They explore various possibilities and interests with each person and work on the ones that do well. Some learn office skills, others cook and still others do packaging and sorting activities. Interestingly, a representative from the centre was at the conference sharing how a few of their young people ad actually held 2-3 month part-time jobs at Nissan Company office and an Avon cosmetics packaging factory. That was something that really encouraged us to delve into the immense possibilities here in India for simple jobs that an autistic person can perform. We saw a great sense of fulfillment in those autistic people.

We also met a couple of people who were trained in Music Therapy with autistic individuals. We were not able to watch a session, but we were able to discuss the need and strategies we could adapt and adopt.

This trip to the Philippines was an eye-opener in many ways. It taught us a lot as well as assured us that we too were seeing results of an equally great magnitude taking into consideration the size of the Indian sub-continent. We hope to keep in close touch with families and professionals there and hope to network at some time so that we can build opportunities, facilities, know-how and strategies for the autistic community in India.

Is There a Difference Between Autism and Pervasive Developmental Delay (PDD)
Charles Hart
From A Parent's Guide to Autism: Answers to the Most Common Questions

Ed note: The term 'Pervasive Developmental Delay' is meant in the same manner as 'Pervasive Developmental Disorder;' it is not a different diagnosis.

This question confuses many people and the answer may confuse them even more. A large number of people with autism, "within the autistic spectrum" or "affected by the syndrome of autism", will not be diagnosed with any of those terms. The more capable and verbal they are, the more likely their diagnosis will be called PDD (Pervasive Developmental Delay) or even more evasively, PDD-NOS (Pervasive Developmental Delay, Not Otherwise Specified).

What's going on? We are watching language change. When Dr. Leo Kanner described his first group of patients with his new-fangled label of autism, most of them had enough speech and self-help skills that they might be called high-functioning be a later generation of researchers. It was only after we discovered that some severely disabled people also had characteristics of autism that we began applying the term to people with such an incredible range of talents and abilities.

The "A-word" was supposed to help people, freeing them from a mistaken diagnosis like schizophrenia or mental retardation. But, as so often happens, the word became devalued through misuse. The most sensational, most severe cases of autism received the greatest publicity. The quiet, moderately disabled persons (like Kanner's original patients) were unnoticed by journalists and television writers. Gradually, but surely, the public image of autism became like Barry Kaufman's first impression that it was "the most irreversible category of the profoundly disturbed and psychotic."

Today, some professionals continue using the term autism as it was used 30 or 40 years ago, to cover a broad range of symptoms connected with language and social dysfunction. Others refuse to apply that diagnosis unless the individual shows extreme symptoms in each of the several areas. The call milder forms of the disability PDD.

Dr. Doris Allen, a developmental specialist at the Albert Einstein School of Medicine, calls PDD "a way of not diagnosing autism", a diagnosis doctors use when they want to avoid the work. PDD has become a professional euphemism, a soft term for something considered too harsh or too blunt.

People have the most well-intentioned reasons for avoiding the real diagnosis. They want to protect a child from a label that might trigger fear, rejection, and the loss of opportunities. I once heard a doctor confide to another, "I won't call this child autistic. That would be like throwing him on a trash heap where no one will ever give him a second chance." That neurologists admits she will only diagnose autism in the most severe cases. Meaning well, she has become part of the problem. Every time doctors or psychologists refuse to call a more capable child autistic, they are narrowing the definition without scientific evidence. The diagnoses becomes more devalued, spiraling downward until there are fewer and fewer children with the diagnosis and more and more diagnosed with PDD.

As long as we have no reliable biological tests to identify autism, it will be hard to qualify these people for services. Insurance companies, government regulations and school services all rely on guidelines for eligibility and benefits. It took nearly forty years to convince officials that children with autism needed special education and communication therapy. All of those entitlements depend on children having the keyword in their diagnosis. When they are called PDD or PDD-NOS, they can't get the benefits they need.

Reading this, you may well ask, 'what difference does the diagnosis make, anyway? Who cares?' Good question! Labeling people just for the sake of categories makes no sense and can do a lot of harm. Unfortunately, they can't get their entitlements if their diagnosis doesn't fit the language in the regulations. We shouldn't ask medical authorities to rewrite scientific guidelines to fit political or economic policies. When researchers discover new subtypes or better ways to identify different forms of autism, let's rewrite the regulations for the services. However, at this time, the arguments about autism and PDD have no scientific value. Public attitudes and the whim of the person conducting the diagnosis, not the biological evidence, seem to determine who has autism and who has PDD.

Perhaps one day, we'll offer services based on people's individual needs, not just their labels. Then the diagnosis of autism, PDD, or Asperger Syndrome will no longer matter.

Update on Open Door

We have moved. Open Door is now located in rented premises in Chirag Delhi. We had two and a half very happy years in the apartment in Vasant Kunj that its owners, the Chopras very generously allowed us to use. We would like to take this opportunity to thank them for their support. We would also like to thank the residents of Sector A, Pocket A, Vasant Kunj, and particularly the Malhotras for being such wonderful neighbours. Barring a handful of exceptions our neighbours were friendly, accepting and often keen to know about Autism. We are happy that in our time there we created some awareness of the condition.

In late April we were visited by Margaret Jensen, Kirsten Broager and Siv Damgaard-Larsen. Their visit was connected with support by the Royal Danish Embassy for a small training and awareness project to be undertaken by Action for Autism. They observed classroom activities through a one-way viewing window, met some of the parents of students attending Open Door, and discussed with the staff the work of the school.

In June a team from Open Door visited Kathmandu to conduct a three-day workshop on Autism. It was attended by parents and professionals from the entire Kathmandu Valley and was organised by the Navjyothi Centre at Baluwatar. The workshop was made possible with support of the Danish Council of Organisations of Disabled People and the Ministry of Education of the Royal Government of Nepal. The team took the opportunity to additionally visit the CBR Project being run at Bhaktapur.

Book Reviews

Higher Functioning Adolescents and Young Adults with Autism: A Teacher's Guide
By Ann Fullerton, Joyce Stratton, Phyllis Coyne, & Carol Gray
Illustrations: Georgianne Thomas

Higher Functioning Adolescents and Young Adults with Autism is written as a guide for all those working with such individuals, especially in an educational setup. This book has been compiled by Ann Fullerton, Joyce Stratton, Phyllis Coyne and Carol George, with illustrations by Georgianne Thomas, a very high functioning adult with autism.

A detailed study to explain different situations, adolescents and adults with autism, face in mainstream schools and difficulties due to sensory integration problems, learning pattern differences and social disability, has been done to show teachers why, their autistic student may do things or react in ways they do.

The insights provided by higher functioning adults with autism, are specially significant. With this new information, persons with or without autism are better able to understand each other. Clearly described situations from the lives of young adults, with autism have been used as examples to highlight the challenges of changing peer relationships, social demands and the struggle to form an adult identity.

The second half of the book focuses on materials and strategies to help guide individuals with autism towards independent living according to their specific needs. It details structuring the learning and working process of each person with examples of work schedules, time management plans, planning chart, visual aids and visually coded work areas. These are especially helpful. The guide also details ways of assisting autistic adolescents and adults with understanding social cues and providing them with accurate social information keeping in mind the fact that they all have unique perceptions of social situations.

Recently, there has been a lot of interest in the concept of using social stories to teach autistic youngsters social skills and this book gives us an introduction to the concept. It is a very clearly structured way of teaching abstract concepts which is exactly what we need with autism.

This book is highly recommended to both teachers as well as carers of higher functioning adolescents and young adults with autism. It will be useful in helping them towards an independent life.

Disability: Challenges vs. Responses
By Ali Baquer & Anjali Sharma

Disability: Challenges vs. Responses is a first publication by Concerned Action Now, an advocacy organisation for disability issues. This comprehensive handbook is an excellent effort that attempts to document the challenges faced by persons with disability and their families, and the means that sections of society have devised to meet these challenges. This 'section' is by and large the continually growing and increasingly effective volunteer sector.

An important inclusion in the book in the Indian Disability Act, which has been reporduced in full. This is significant since barring disability activists, most persons with disability as well as most families of the disabled are completely unaware of the Act. For anyone wanting to be a disability activist and not quite sure where to start, this book is a good place.

The Indian Disability Act lists merely seven categories of disability, viz blindness, low vision, leprosy cured, hearing impairments, locomotor disability, mental retardation, and mental illness. An interesting inclusion in the book are case studies of four disabilities: Autism, Hemophilia, Achondroplasia (Dwarfism) and Alzheimer's Disease, that are not yet acknowledged by the Government.

As a resource in disseminating information on disability and in implementing rights of the disabled, this book should find a place in every resource centre working in the field. Additionally, it should be available to the general reader as we believe that this book can help correct stereotypes of disability and help people see the disabled and their families for what they are: ordinary people trying to make the best of a challenging situation and trying to live ordinary, everyday lives.

Helpline

Q. My son cannot wear his clothes by himself, but can remove them very easily. If he gets angry he throws things around him, and often bangs the doors and window panes, or bangs his head on the door or window pane. Please give suggestions about his regular activities.

A. Since your son is toilet-trained, and can undress himself, maybe you could now teach him to dress himself and bathe himself. You could use the method of backward chaining. Start with the easiest garment to put on, like a pair of shorts. You help both his feet into the pants legs, and then help him to pull it up hand on hand. Your son seems to be able to follow instructions, so you could also put it on half-way and then give him short clean instructions "Pull up", "Higher", AND DON'T FORGET TO PRAISE!!

In a similar manner, you could teach him to bathe himself. It is summer now, and this is a good time to start. In the beginning, you will have to go through the initial bathing process and leave the last couple of mugs for him to pour. Again break down instructions into a short clear step by step process. "Dip mug", "Lift up", "Pour". The pouring may have to be done hand on hand, and usually means guiding and not doing it for him or forcing him into compliance.

As far as his behavior is concerned - you want to IGNORE unwanted behavior and PRAISE BIG - desired behaviors. So if he is angry and throws things, you want to a)IGNORE IT; b)Remove anything breakable from sight and c) Remove him to another room. This must be done very, very comfortably, with as little attention and verbal input as possible.

You haven't mentioned whether he goes t school or not. But you could prepare a daily schedule for him anyway. Specify times and activities, keeping in mind, the various things he has to do, during the day, E.g. Wake Up; Brush Teeth; Bathe; Dress; Breakfast; School etc. If he does not read, you could use small pictures to represent each activity like drawing a toothbrush, plate shirt etc. This will help him to feel more organized and comfortable. As each activity is completed, you can take it off the chart and tick off the word.

Q. My eight year old daughter has been diagnosed as having Asperger's Syndrome. These days she seems to scream a lot. Any question she answers with a scream. When she is happy also she screams. When she is upset, she screams. Formerly she used to scream, but after her exams finished, and we went to Bombay and came back she did not scream for about a month. But once I just shouted at her mildly, and now her screaming has increased to more than before.

There is a gentleman who has done Ph.D in music and is also in the education field and has read a lot on the subject. He has started music therapy on my daughter. If you have any information on this, regarding its use in behaviour modification or increasing concentration, could you please send it.

A. As for your query, regarding your daughter, many a time such behaviour like the screaming are done purely to get a reaction. You must give a thought to whether or not you react to her screaming. If she is getting any attention for it (even a comment, about it later on can be enough attention sometimes), then chances are that she is going to keep doing it. What you will need to do is IGNORE her COMPLETELY whenever she screams, but pay her a lot of attention and praise her a lot when she is quiet. And praise POSITIVE. Instead of saying 'Oh Good! You're not screaming', you want to say 'Oh Good! You're sitting quietly!'

The important thing to remember will be to be very consistent and very persistent. Please don't give up in a week or even two. This has been going on for quite a while, and chances are that its going to take a bit of time before it subsides, but we can assure you that it will.

When you are responding to a scream, there are two things at work here. a) We are reinforcing negative or unwanted behavior, and b) we are losing an opportunity to teach her an appropriate way of responding. If she screams a request at you maybe you could tell her, 'If you want water say 'Give water'. " And CALMLY wait until she does do. If she does not respond in the way you have requested, it is very important, that you don't finally give in to her want.

Music therapy need not be a therapy on its own but can be incorporated in with other teaching methods. I'm sure your daughter might be very fond of music - use it as a reward. Also use it whenever possible in the instructions you give. (Sing them out to her instead of speaking, the chances of her responding will be higher!) If you know someone who has enough knowledge about the disability, and is willing to teach your daughter an instrument, or just spend time with her playing some music, then that would be a great idea to explore.

Q. My daughter hits her little brother, and other members of the family. She removes her clothes. She is also a poor sleeper. Can we give her Serenace to make her sleep?

A. To start with, it would be important for you to know a little about autism, so as to understand the REASONS why your daughter, may be doing, the things she does. Now to your queries. There are many times when our children are throwing things around and shouting or hitting, and then there are times when they are sitting very calmly and nicely. Most often, we tend to ignore them, when they are quiet, and yell at them or tell them over and over again to 'stop', when they are exhibiting unwanted behavior. Now all children want attention. And if they get attention by kicking, and screaming then they are definitely, going to do that more. On the other hand, if you can be focused and aware to catch your child every time she is quiet or calm, and PRAISE her profusely, but IGNORE her anytime she does something you do not want, then these unwanted behavior will go away.

It is very important to remember to be very consistent and persistent. Stop saying 'No' to her completely, and make absolutely no comment about her acts at all even in reference to it later. If you ignore it a few times and give it attention a few times its not going to work. Consistency in every environment, by every person is important. We realize this may be difficult for you at the start. We can assure you that it will be worth while.

Her desire to be without clothes, and hitting other children to make them cry, could also be attention getting behavior. Just be aware to remove the other child or grandparent, so they are not hurt an ignore her. These behaviors could also be due to sensory defensiveness. This is basically a hypersensitivity or lack of sensitivity of the senses (touch, taste, smell, hearing, sight). There is a possibility that she is very sensitive to the feel of certain fabrics, against her skin. Try on different types of fabrics, cottons, terrycots, polyesters etc., and tight or loose garments, pants or shorts, T-shirts or shirts and see which one she keeps on. If the reason of her sensitivity is tactile sensitivity then chances are she will keep on one of the kinds of garments/fabrics you try on her. If not and the reason is for attention, then praise every time, you see her with her garments on, and if she takes them of don't comment. After a few minutes, try to put it on again. If she puts it on PRAISE big. Keep doing this and there is every chance she will begin to wear her clothes again. Again you will need to phase it in - start with only one garment.

You've inquired about the 'Option Method'. Basically this approach involves a very accepting, non-judgmental happy attitude, by everyone around the person with the disability. We believe that autistic people can and do learn to be happy and content, which in turn helps them to cope with their disability, particularly if all around them learn to accept and understand their difficulties.

Auditory Integration therapy has been done with some autistic people. Of them, it has helped some and not helped some. No one can guarantee a positive change due to AIT at anytime. Right now there is noone in India who is trained, to perform the therapy. Mrs Saroj Madan was here earlier with Georgiana. The reason AIT helped Georgiana Stehli so much, was perhaps because her hearing sensitivity was very high and that was the main cause of a lot of her autistic behavior. But autism is a lifelong disability, and though AIT has helped her come so far as to lead a near normal life, she still has autism. She also still has other sensitivities such as her acute sense of smell, which she told us about on her visit here.

You've also inquired about 'Serenace'. Our belief is this drug and the likes of it are best avoided. As you learn to be comfortable about your daughter's autism, and be consistent in your responses to her, she will also calm down. Many autistic people have erratic sleep patterns and may sleep for only 4-6 hrs in the 24 hour period. If she is safe in her bed or walking around the house, then you want to let her be, and go to bed yourself. Ignore any noise she might make. Just make sure that she is safe and the house is child proof.

Medication is something we prefer not to advocate. Our belief is that in sedating a child, we'll just be reducing the opportunity for her to learn and progress. But we also want to make very clear that this is our subjective opinion; you as parents have to take the decision yourselves. We only make suggestions.

Letters

I am greatly impressed by the genuine human emotion coming through your newsletter. Here is wishing it all the best.

Dr. Amita Dhanda.
New Delhi

I have an autistic son Neel about four and a half years old. I have been receiving 'Action for Autism' since last year and find it quite interesting. The practical tips column is useful. Keep up the good work.

Bharat D. Shah
Coimbatore

I write to ask you if you can let me have information concerning your national association, how it helps Asperger Syndrome sufferers, and interesting news about people in your country, their hobbies and work.
I work for the British Government, which I hope will be changed by the forthcoming election. I am undertaking a course with the Open University. I am studying French and English, hoping later to add German, and possibly Spanish in order to qualify for a language diploma. I am interested in football and collect programmes of all sports, having a collection of more than 10,000. I am also heavily involved in the Legion of Mary, A Catholic Society.

My Asperger diagnosis dates from September 1992, and I attend a Social Skills Group at the Maudsley Hospital in London.

I have just been appointed Editor of 'Asperger United'. Our first edition under my management has not yet been published. However I enclose a previous copy for the interest of you and your members.
I will publish information concerning India in our next edition and hope I can get an extra copy printed and sent to you.

John Joyce
Asperger United, International Editor,
Surrey England.

Ed: We have placed Asperger United in our Resource Centre for interested readers.

You will be happy to know that Auditory Retraining according to the Berard Method is now available in India at an affordable price. Dr. Radhike Khanna and I have both been trained under Dr. Guy Berard and are willing to take clients here, at S.P.J. Sadhana School.

Sr. E. Gaitonde, Principal
S.P.J. School
Mumbai