N E T W O R K

April 2001 Vol. VIII, No. 1

Page One

While the question that is uppermost in the minds of parents of children with disability is 'what after us?' very few rarely go beyond the question. This is especially so when the child is young and adulthood seems in the distant future. Sometimes investments are made in the name of the child - without a thought as to how those would be operated in the parents' absence. Where there are typically developing siblings, parents assume the former will take the responsibility for their disabled brother or sister.

However with the best of intentions that rarely happens. With the best of intentions and despite a loving relationship, siblings tend to move on as they get older. Pressures of education and career often have siblings move to other towns, other cities, and other countries.

Then what?

When the child is young parents are so caught up in accessing their child's educational needs that they tend to put the question of the future on the back burner. And before they realise it they have a 20 year old, the parents are perhaps in their fifties or sixties, and no solution in sight. Which is why it is so important for parents to get together, when their child is still young, and work on setting up services for when their children are adults.

The Delhi Parents Support Group (PSG) have taken a first step in this direction and are considering several models of adult living. We know that the Parents Support Group in Mumbai too are alive to the issue. When the AFA team was in Mumbai to give workshops in February, Parul Kumtha of the PSG made us all sit up with a thought provoking talk on our children's future...

AFA gave several other workshops, some by visiting experts notably Linda Hodgdon, Julie Robinson and Mette Deijberg on a range of topics that covered teaching communication, dealing with sensory issues, and teaching methodologies.

The National Trust has been active under its CEO, Mrs Jayati Chandra and schemes have been formulated that are now in the process of being fine-tuned, notably one on care taking.
For the first time the National Census has been conducted with questions on disability that are sensitive to the disability community.

Our allotment of land from the DDA has run into another snafu. After several years of struggle to keep the application afloat we had learnt that our application would be turned down because AFA does NOT receive a grant from the government; in effect penalising us for having managed to survive so many years without Government help.

However, that hurdle passed we are now being granted 1,500 sqm of land if we pay - let's hold our collective breath: Rs 62 lakhs!!! The reason? Because authorities believe autism is an "emerging condition and not of particular reference to India". Since the possibility of a small non profit organisation like AFA, raising a sum that even large NGOs balk at, seems far from possible, such an allotment is as good as the DDA turning our application down.

While leading medical professionals in Hinduja Hospital, Jaslok Hospital report that they see upto four or five kids with autism EVERY DAY, senior authorities in the Capital have been known to comment "Oh it is fashionable these days to diagnose every kid with autism". If only that were so! For the families it is only despair and torment when they find there are no services in place to help them in their desperate situation.

India still has not 'recognised' a training course for therapists for children with autism. This, even though we run a one-year training programme for teachers for several years now, the results of which are acknowledged beyond the borders of our country, as well as another course being run in Bangalore. One reaction is that there are after all "plenty of training courses for mental retardation," based perhaps on the mistaken premise that mental retardation and autism are interchangeable in educational terms. Admittedly we are promised support with a three-month 'Master Trainers programme' from the Rehabilitation Council of India for which we submitted a project six months ago and are awaiting action.

Of course we will not give up. We have learnt to live with hurdles, and they have pushed us to give our best and to stretch every resource to its limit so that the qualities of services we offer are not affected. Wonderful friends - parents, professionals and others have come in out of the darkness to lend a shoulder and keep us going. But so much more needs to be done.

There are children who need intervention NOW - not someday in the distant future when the government finally wakes up to the reality that cannot be wished away or swept under the carpet.

There are parents who need to be given training NOW - so that they are able to be effective therapists for their children, and know the relief of knowing that autism is not a dead-end diagnosis but that their children can be taught skills that will help them lead relatively independent and productive lives.

There are professionals who need to be educated about the proven teaching methodologies that exist so that they are able to give more positive help to those effected - NOW - so that fewer children waste valuable years of their lives which despite their autism is as precious to them and their families as any other child's.

Is the MMR Vaccine a Cause of Autism?
True or False: a discussion of current scientific evidence
Indrani Basu and Allison Cornish

The Importance of Childhood Immunisation

Disease prevention is the key to public health. Vaccines prevent disease in the people who receive them and protect those who come into contact with unvaccinated individuals. Vaccines are responsible for the control of many infectious diseases that were once common, including Polio, Measles, Diphtheria, Pertussis (Whooping cough), Rubella (German measles), Mumps, Tetanus and Haemophilus influenzea type 6 (Hib). Vaccine preventable diseases have a costly impact, resulting in doctors visits, hospitalisations and premature deaths. In addition to protecting the individual child, immunizing individual children also helps to protect the health of the community (termed 'herd immunity'), especially those people who are not immunized for a variety of reasons. In order to provide herd immunity to the whole population the immunisation rate needs to be at least 92%.

However, as a result of parental concern, over reports linking the MMR vaccine to the incidence of autism the immunisation rate for MMR in some parts of the UK and the US has fallen to as low as 75%, which is worrying the authorities in these respective countries.

What is the MMR Vaccine?

To many of us Measles, Mumps and Rubella are common childhood illnesses that we went through with no effect beyond the discomfort at the time. However, these childhood diseases can have serious effects, especially when they become epidemic in the population.

Measles has a high fatality rate among children, mainly in developing countries, accounting for approximately 8,75,000 deaths each year. However, recent outbreaks in industralised countries have, highlighted the importance of improving Measles immunisation coverage throughout the world. Congenital Rubella Syndrome is an important cause of deafness, blindness and mental retardation. It is estimated that more than 1,00,000 cases of Congenital Rubella Syndrome occur each year worldwide. Mumps is an acute infectious disease. Although the disease is mild, upto 10% of patients can develop Aseptic Meningitis: a
less common but more serious complication is Encephalitis, which can result in death or disability. Therefore when the MMR vaccine (Measles, Mumps and Rubella combined vaccine) was introduced in the late 1980's it was welcomed as a means of giving protection
to young children from all three communicable diseases with just one injection.

Does MMR Vaccine Cause Autism?
The Case for the Hypothesis

A variety of factors could be associated with some forms of autism, including infectious, metabolic, genetic, neurological and environmental factors. Recently, there has been some public interest in a theory suggested by researchers and some parents of children with autism that the MMR vaccine, or that immunisation in general, may be linked to autism.

In the UK around 2,000 families are taking legal action, claiming their children developed autism after receiving the MMR vaccine. Prominent among those involved in the legal action is a Mary Robinson. Robinson has six children. The eldest is the only one that does not have autism. The eldest child also did not receive the MMR vaccine. Robinson believes, the other five of her six children developed autism after receiving the MMR immunisation.

Another parent, Jackie Fletcher has founded a parent support group called JABS when her son failed to develop normally apparently after receiving the MMR vaccine.

An initial observation linking autism and the MMR vaccine was reported by Dr. Andrew Wakefield, a gastroenterologist at the Royal Free Hospital in the UK. Dr Wakefield and his colleagues first attempted to link the Measles disease and vaccination to bowel diseases such as Crohn's Disease. As a result of a study conducted in 1998, Dr. Wakefield suggested that the MMR vaccination led to intestinal abnormalities
which resulted in impaired intestinal function and developmental regression within 24 hours up to a few weeks of vaccination. The study involved a review, of reports of 12 children with bowel disease and regressive developmental disorder, mostly autism. In nine of the cases in the study the children's parents or pediatricians speculated that the MMR vaccine had contributed to the behavioural problems of the children.

Also in 1998 an American research professor, Vijendra Singh, suggested that exposure to Measles (such as the Measles component in MMR) could trigger a reaction in some children which interferes with the myelin sheath surrounding nerves in the brain which may ultimately be the cause of autism.

As a result of this controversy there has been a fall in the number of children receiving the MMR immunisation in some parts of UK. In response to this situation the British Government launched a three million-pound campaign to promote the vaccine. This campaign has been condemned by the National Autistic Society (NAS) in Britain as it believes the money could have been better spent on research. In response to the widespread concern the European Union is about to start a systematic review of the effects of the MMR vaccine at a cost of more than 2.5 million pounds.

Those opposed to the MMR vaccine point out that no one is questioning the need to vaccinate, but rather the need to give a combined three-live-virus in the one vaccine. What many parents want is the right to choose between giving three single shots, instead of the single MMR vaccination. Parents who are most cautious about giving their child the MMR vaccine are those from families where autism is already present, or who fear that their child may be among the very small percentage who are possibly susceptible; these parents often therefore favour the single shot vaccine. However, medical opinion is that this exposes young children unnecessarily to potentially serious diseases as the vaccinations have to be spread out over long intervals.

For instance, if the Rubella vaccine were delayed, a million children would be susceptible to Rubella for an additional 6-12 months. This would potentially allow otherwise preventable cases of Congenital Rubella Syndrome (CRS) to occur. Infection of pregnant women with the 'wild' Rubella virus is one of the few known causes of autism. Thus, by preventing the infection of pregnant women, the Rubella vaccine also prevents autism.

Does MMR Cause Autism?
The Case against the Hypothesis

Dr Wakefield's study was reviewed by an expert committee from the UK Medical Research Council (MRC) that concluded that 'there is no evidence to link the MMR vaccine to autism'. On 3 April, 2000 the MRC issued a new report confirming its earlier conclusion, 'MMR has not been linked with inflammatory bowel disease in autism'.

The American Centre for Disease Control and Prevention (CDC), believes that the current scientific evidence does not support the hypothesis that the MMR vaccine, or any combination of vaccines, causes the development of autism. The research that supports this statement includes:

1. The British Committee on Safety of Medicines convened a 'Working Party on MMR Vaccine' to conduct an extensive review of several hundred cases reported to a group of solicitors as having developed autism or Crohn's (inflammatory bowel) disease as the result of immunisation with the MMR vaccine. The Working Party concluded that the information available, given the limitations,"...did not support the suggested causal association or give cause for concern about the safety of MMR or MR (Measles & Rubella) vaccine."

2. A recently published study in The Lancet by Dr Brent Taylor and colleagues provides the best population-based evidence regarding MMR vaccination and autism. The author identified all 498 known cases of autism spectrum disorder (ASD) in children living in certain districts of London who were born in 1979 or later - co-related the cases to an independent vaccination registry. The results of this study were that:

o Despite an increase in the number of diagnosed ASD cases since 1979, no jump occurred after the introduction of the MMR vaccine in 1988. Such a jump would have been expected if MMR was causing a substantial increase in autism cases

o Children who were vaccinated before 18 months were diagnosed with autism at ages similar to children who were vaccinated after 18 months of age, indicating that the vaccination did not result in earlier expression of ASD characteristics. If MMR were causing many autism cases, it would have been expected that children vaccinated at a younger age would develop autism at a younger age than children vaccinated at an older age.

o At age two, the MMR vaccination coverage among ASD cases was nearly identical to vaccination coverage in the same London districts, providing evidence of a lack of overall association between ASD and vaccination.

o In general, the first diagnosis of autism or initial signs of behavioural regression were not more likely to occur within time periods following MMR vaccination than during other time periods.

3. A study conducted in Sweden by Gillberg and Heifbel involved 55 known cases of autism, and also showed no evidence of association between the MMR vaccine and autism.

Finally, one of the world's leading immunisation experts Dr Robert Pless, told a major conference in Halifax, Canada that there is no evidence to link autism and the MMR vaccine. Dr Pless said that it was biologically implausible for a vaccine to cause autism. The condition he said is present at birth and no association has ever been found between the MMR vaccine and autism. He went on to say that there are rare instances where certain conditions have been caused by vaccines. For instance, the Polio vaccine can cause Paralytic Polio, the MMR vaccine can lead to Thrombocytopina, and Rubella can provoke acute arthritis. However, as Dr Pless points out, these shots prevent infinitely more diseases than they cause.

What is perhaps fuelling parents fears in the MMR-Autism controversy is the coincidence that autism tends to be diagnosed around the time that children receive their first MMR shot. However, in conclusion it is important not to dismiss those who question the safety of vaccination, but it is equally important that the public is educated on health issues so that parents can ultimately make informed choices concerning their children.

On a personal note, one of the authors has two sons; the eldest received the MMR shot and her younger son did not. Both have autism.

 

Group Housing Society

o Do you want a special school/ integrated school for your child just near your residence?
o Do you want a library of books related to Autism just near your home?
o Do you want some one to take care of your child when you want to relax a bit, preferably at your home itself?
o Do you want an understanding neighborhood, where people understand the needs of your special child and yours?
o Do you want a play area for your child where he/she can play with other children and that too within a protected environment?
o Do you want a neighbor with whom you can share your ideas over a cup of tea, in the evening?
o Do you want that your child has access to understanding people in order to improve his/her social skills?
o Do you want a workplace adjacent to your home, where your grown up son/daughter can go to work in the morning and come back on his/her own?
o Do you want to own a home where your special child can live in a well-protected environment even when you are no more.

Most of us will answer yes to all these questions and a lot more. But the big question is how? We in the Delhi Parents Support Group feel that all this can be achieved.

The idea is to form a Group Housing Society consisting of 1 bedroom to 3 bedroom independent dwelling units. The ground floor of the society can be dedicated to common facilities like a school, vocational centre, a library, a gym, an auditorium, a couple of guest rooms and other recreational facilities. Or, the residence and other facilities could be housed in separate buildings.

All we need are 60 interested persons. The proposed Society will be within NCT of Delhi, and preferably within Delhi subject to availability of land. We believe that there is a pressing need for such a Society, because, we can no longer wait for some miracle to help us get all this. If we want some thing for our children, we need to take action NOW, before it is too late.

If you would like to be a member of the proposed society, please send your consent in writing because the membership is limited and is on first come first served basis. You can send your consent letter at the addresses given below:

Wing Cdr Vivek, H 19/4 Shankar Vihar
Defence Officers Enclave, New Delhi - 110010
Tel: (R) 6151817, (O) 3377326

Deepak Verma, C/o Albatross Fine Chem Limited
Wz 8/5, Kirti Nagar Industrial Area, New Delhi - 110015
Tel: (O) 5101203, 5937290, 5176318 (R) 5683296,5268480

Turn Taking: Teaching the Skill at a Basic Level

People with autism have poor social skills and unstructured social time poses a real challenge for them. Those children, who are in an included set up for instance, have a lot of difficulty at recess time, a period of unstructured social free time. In the words of Temple Grandin, a person with autism feels like "an anthropologist on the planet Mars" when having to negotiate social rules, and the social demands of reciprocity and mutual interactions.

Being able to take turns, whether it is in a game or in any social setting, is a basic way of interacting socially. While it seems like a very simple and easy task for a neurologically typical person, for a person with autism this can be a complex skill. By creating structure and predictability to teach rules and routines in different situations and settings we can help build up the child's social skills. Often we find that individuals with autism appear unmotivated to interact, so we want to set clear expectations in a lucid and exciting manner.

Different children may often be at different levels in their ability for social interaction. Sometimes a child can be at a presocial level where he is unable to even tolerate the proximity of another child in the same room. Another child might take pleasure in being in a room and sit at a table with another child but has difficulty in tolerating the others intrusion into his box of crayons.

In this article we will focus on those children who are able to tolerate being around other children and are able to share manipulating the same object with another child without getting distressed. However such a child may still not understand the rules of taking turns. He may be able to play with a box of blocks for instance and tolerate another child using some of the blocks from the same box as his but he may still have difficulty waiting his turn in an activity that would demand such a thing. However, this necessary skill can be taught.

The suggestions that follow are not of course to be followed rigidly. Each child is unique and different, and therefore the steps to teach turn taking have to be adapted and modified depending on the particular child. To start we could use a food item that is highly favoured by the child. For example if the child likes chips, we could try and introduce the rules of turn taking on a one on one basis using chips. In which case we want to buy a packet of chips that come in neat large pieces. Tell the child that you will take turns to eat the chips one chip at a time: first he will take a piece, then his turn will be over and you will take a piece and then it will again be the child's turn and so on. Let us for purposes of clarity suppose the child is Bim and you, the adult are Tarun. Keep a bowl of the chips between yourself and the child. Let your child take a turn. Say "Bim's turn over. Now Tarun's turn" and you pick a piece of wafer. Next say "Bim's turn" and let her pick a piece of chip and eat.

There is a possibility that the child reaches for the chips out of her turn. In that event place your hand firmly over the bowl and remind the child that: "It is Tarun's turn". Again, if the child grabs an excessive handful that empties out the bowl, very calmly and quietly remove the extra chips from her hand, put them back into the bowl, and remind the child "Take one chip." You can do such a turn taking activity using nuts, Cadburys Gems chocolates, pieces of murukkus, gathias, and so on. It has to be an item that the child truly fancies.

However, it does not have to be food alone. In fact many children are indifferent to food. If your child likes the sound of his palm hitting a tabletop or a stick hitting a surface then you can use that to teach turn taking. Take turns hitting the tabletop. Let your child hit once. Say "Tarun's turn" and hit the table once. Then "Bim's turn" and let her hit the table top once. As with the chips, she may not stop after hitting the table once. She may want to continue hitting. So then as soon as her palm has connected with the table one time, you hold her hand and get your turn in quick before releasing her palm. If holding her palm distresses her then don't. Instead, as soon as she takes one turn you can quickly slip your hand between her palm and the table, take your turn with your other hand, and slip your palm back out so that the child can now take the next turn.

Once the child knows what is expected she will gradually learn to respond in a more positive manner. After a child has learnt the skill of taking turns one on one, gradually include one more person in taking turns. So there are now three persons and the child has to wait longer before his turn with the chips, or the drum, or the toy, comes round again. This could be built on with more people participating.

If it is possible to get the cooperation of another child, such as a typically developing child at a school or a sibling at home then instead of the child and an adult you can use two children in teaching turn taking.

Turn taking can also be taught in other somewhat more sophisticated situations, for example, when the family is eating a meal together. The child might like a particular item so much that he wants to fill his plate with it. Explain beforehand, that each person takes two helpings and passes the turn to the next one. Only after everyone has finished taking his or her two helpings can a person have a third helping. Keep the item out of the child's reach. If she reaches for the food item before her turn, firmly but comfortably say that others have still to take their turns.

Similarly, turn taking can be taught in various other physical and sit down situations. Situations that can lead to the child learning how to be a part of a group in unstructured social times such as play times: throwing and catching a ball, shooting a basket and so on.

While many children with autism seem to enjoy rolling or kicking a ball around, they do not understand taking turns, waiting for their turn or following rules in the game. In order to develop their interest in playing a group game we have to start by structuring the game and making it visually clear so that the child knows exactly what he is expected to do.

Along with visual clarity it is important to set up an activity in such a manner that the child encounters success in the activity.

Let us say they will be shooting a basket. The basket will have to be strung low enough so the child can throw a ball into it and it has to be clear to the child where he stands when he does so. It must also be clear how many turns each person gets and when the game is completed, so that the child knows this is not one endless exercise. While playing a game like this or in a school situation during a group activity we can make turn taking visually clear by putting up a chart as the one that follows. Let us say we start with two persons, the child and one other person, Bim and Tarun. We write their names on a sheet of paper and make clear how many turns each person gets, say three turns each.

BIM TARUN

 

After each turn, mark the sheet to make it visually clear for the child how many turns he gets, when he gets his turn and when all his turns get over. After Bim takes her first turn we mark it out on the sheet of paper; similarly after Tarun takes his turn and then again after Bim's next turn. So if the sheet looks like this:

BIM TARUN

 

 

 

...it is then clear that Bim has finished two turns and has just one more turn left. Tarun has had only one turn and will take two more turns.

Over time a turn taking game can be made more complex. For instance, there can be three children playing, with each taking two turns in three rounds.

BIM TARUN SHEILA

 

 

 

By setting up structure and clear expectations, a child can be taught to participate in activities that are not particularly motivating to the child at first. They can begin to enjoy and look forward to such activities.

When siblings are fighting over something at home, both can be calmed down by playing a turn taking game with the particular object over which they are fighting. We could allot a short time for one child to keep the object. After the specified time is over, pass it to the other child for that same amount of time and so on.

Over a period of time children can be motivated to play competitive games as well as take their turns in various other social settings and situations

Understanding and Teaching Friendship Skills
Tony Attwood and Carol Gray
Printed with permission of the authors

One of the central diagnostic criteria for Autistic Spectrum Disorders (ASD) is a failure to develop peer relationships and clinicians examine how the child conceptualises and demonstrates friendship skills. Normal childrens' conception of friendship changes over time and it is notable that children with autism and Asperger's Syndrome often have an immature and unusual definition of friendship. The research literature on the concept of friendship indicates there are four levels between early childhood and adolescence. The four levels are summarised as follows:

Level 1: Approximately 3 to 6 years
The child recognises that games and activities cannot happen unless there is an element of turn taking but there is an egocentric or simple conceptualisation of friendship in terms of defining a friend as someone who gives you things or someone you play with. Friendship is based on proximity and physical attributes and when asked Why is...your friend? The typical response is He lives next door!

Level 2: Approximately 6 to 9 years
There is an increasing understanding of the concepts of reciprocity and mutual rather than one-way assistance. The likes and dislikes of the other person are more likely to be considered with friendship based on how closely each friend matches their self interest, for example, in liking similar games. There is also a new awareness of the motives, thoughts and feelings of others. When asked Why is...your friend? the typical response is He lets me play the games I want to...Because she comes to my party and I go to hers or She's nice to me.

Level 3: Approximately 9 to 13 years
The child is more aware of other peoples opinions of them and how their words and actions affect the feelings of others. They are more careful in what they say and do because it may be hurtful to someone. Friendship can be based on shared experience or common interests and helping becomes more valued than simply playing together. There is a greater selectivity in choosing friends, a gender split and a greater durability in the relationship. There is increased value placed on personal attributes such as trust, loyalty and keeping rather than breaking promises. When asked Why is...your friend, the typical response is He sticks up for me and helps me with my maths homework...She enjoys doing the things I like to do or I can talk to them and they listen.

Level 4: Adolescence to adult
Peer group acceptance becomes more important than the opinions of parents, there is a greater depth and breadth of self disclosure, desire to be understood by friends and recognition that there are different types of friendship - from acquaintances to close friends with autonomous interdependence. When asked Why is...your friend, the typical response is: Because we think the same way about things.

When children with an ASD are asked What makes a good friend?, clinical experience suggests that a common response is a list almost exclusively of actions that a friend should not do, e.g. bully or tease you, which indicate that the children have experienced a disproportionate level of negative experiences in their peer relationships. They know what a friend should not do but have little idea what they should do.

Social play with friends
The social play of children with an ASD is often more immature than their peers and includes unusual characteristics such as having less motivation to seek friends, autocratic qualities and being less able to demonstrate the wide range of behaviours that we use as an index of friendship skills. The traditional school curriculum pays little attention to the development of friendship skills yet these skills are the foundation of abilities that are highly valued by adults in their professional and personal lives, namely having teamwork skills, the ability to manage conflict and having successful personal relationships. A recent study examined the perceived quality of life of high functioning adults with autism and Asperger's Syndrome and only one variable - hours spent with friends - was able to significantly predict the scores on any of the quality of life measures . These adults valued and desired friendships more than anything in their lives, yet few had the ability to maintain acquaintances, let alone friends. As children we were never directly tutored in friendship skills, so how do we start teaching someone who appears to lack the intuitive ability we take for granted?

The starting point is an assessment of the friendship skills the child demonstrates and the skills that are conspicuously absent. We have standardised tests to measure cognitive, linguistic and movement skills but at present we do not have standardised assessment instruments for friendship skills that can be applied to children with an ASD. However, a review of the research literature on the range of social behaviours used as an index of friendship skills with ordinary children can produce a primitive checklist of friendship skills for children with Asperger Syndrome. The key social behaviours to be examined are as follows:

• Entry Skills: How the child joins a group of children and the welcome they provide for children who want to be included in their activity.
• Assistance: Recognising when and how to provide assistance as well as seeking assistance from others.
• Compliments: Providing compliments at appropriate times and knowing how to respond to a friend's compliment.
• Criticism: Knowing when criticism is appropriate and inappropriate, how it is given and the ability to tolerate criticism.
• Accepting Suggestions: Incorporating the ideas of others in the activity.
• Reciprocity and Sharing: An equitable distribution of conversation, direction and resources.
• Conflict Resolution: Managing disagreement with compromise, and recognising the opinions of others. Knowing not to respond with aggression or immature mechanisms.
• Monitoring and Listening: Regularly observing the other person to monitor their contribution to the activity and body language. Their own body language indicating interest in the other person.
• Empathy: Recognising when appropriate comments and actions are required in response to the other person's circumstances and the positive and negative feelings of others.
• Avoiding and Ending: The appropriate behaviour and comments to maintain solitude or end the interaction.

The next stage is to use behavioural and cognitive strategies to maintain and improve friendship skills. If the skills outlined above occur, then it is essential that such behaviour is recognised and rewarded. The authors would add that the praise should also be directed at the other child, as they need encouragement to maintain their friendship, especially as such children are often not among the most popular children in the class or neighbourhood. It is also essential that the child's social play is monitored by an adult to identify when the cues for specific friendship skills occur but the child has not recognised them or is unsure how to respond. The child's attention is drawn to a specific cue or opportunity and verbal prompts and instruction given as to what to do. This is an application of the traditional behavioural techniques of task analysis, prompting, shaping and reward. Children with an ASD are unusual in that they can be taught what to do in a given situation, but they may not understand why the action or comment is appropriate. They need to learn the theory as well as the practice. Conventional programs to encourage friendship skills with ordinary children make assumptions that may not be applicable to children with an ASD who have significant problems with Theory of Mind Skills, Affected Relatedness, Central Coherence and Executive Function. However, Social Stories can be used to assist the child to acquire the necessary cognitive mechanisms. The following is an example of a social story for a grade one child who needs to learn about the concept of assistance in friendship. It is designed to understand what 'help' is

"Sometimes children help me"
o Sometimes children help me. They do this to be friendly.

o Yesterday, I missed three maths problems. Amy put her arm around me and said, Okay, Juanita. She was trying to help me feel better.

o On my first day of school, Billy showed me my desk. That was helpful.

o Children have helped me in other ways. Here is my list:

o I will try to say, Thank you when children help me.

"How I can help children in my classroom"

o My name is Juanita. Sometimes, children help me. Being helpful is a friendly thing to do. Many children like to be helped. I can learn to help other children.

o Sometimes, children will ask for help. Someone may ask,"Do you know what day it is today" or "Which page are we on?" or maybe something else.

o Answering that question is helpful. If I know the answer, I can answer their question. If I do not know the answer, I may try to help that child find the answer.

o Sometimes, a child will move and look all around, either under their desk, in their desk, around their desk. They may be looking for something. I may help. I may say: "Can I help you find something?"

o There are other ways I can help. This is my list of ways I can help other children:

o Children like to be helped.

Other techniques can be used to encourage friendship skills such as a friendship diary, matching individuals and support groups. For younger children, a friendship diary can be used to record occasions when the child demonstrated friendship abilities and other children were particularly friendly towards the child. It is interesting that one of the criteria ordinary children use for defining what makes a good friend is someone who has similar interests. However, the special interests of the child with an ASD may not be interesting or popular with their peers. One option is to identify other children who have the same interest and introduce the two children to each other. An example is a child with Asperger's Syndrome who has a special interest in ants, a solitary pursuit for him as no other of his acquaintances at school shared his enthusiasm and knowledge of this topic. However, by chance, another local child who also has Asperger's Syndrome, was also interested in ants. When they were introduced a genuine friendship occurred with joint expeditions to observe and collect ants and the sharing of information and resources on these insects. It was notable that each child's friendship skills with other children appeared hesitant and contrived, yet when the two met, their natural friendship skills were far more fluent and spontaneous.

This technique can be facilitated by local parent support groups having a registry of children and their interests, pen pal registries, special interest clubs and Internet chat lines. An extension of personal matching is the development of local support groups run by adolescents and young adults with Aspergers Syndrome. These groups hold regular meetings and excursions to destinations that may not be valued by their ordinary peers, such as museums and transport facilities. These groups provide a social life outside school, and the opportunity to meet someone who shares the same experiences and values, the basis of many friendships for adults.

One of the issues raised during social skills workshops for young adults with an ASD is recognising when someone appears to be friendly but may actually be taking advantage of their social naivety, and how to identify and respond to the different types of personality. Tuition may be required in identifying hidden motives, seeking a second opinion and how to manage situations of potential abuse. It can also be necessary to teach the strategies of maintaining friendship, coping with grief when the friendship ends and overtures of friendship that are not reciprocated. The authors have also noted that children with Asperger's Syndrome appear to lack an ability to perceive and describe the personality characteristics of others and themselves. When asked "What sort of a person is...?" their responses are predominantly descriptions of physical attributes such as height or what a person does, eg. a teacher. What is missing is a wide lexicon to describe the different types of character. When personality characteristics are nominated, a common response is "nice and kind", and synonymous words to this one characteristic. The children appear to have a one dimensional approach to characterisations. Other children can quickly "read" a person's character and adapt their behaviour accordingly. They know which children to avoid and are more proficient in choosing who complements their own personality.

To teach such skills in young children with Asperger's Syndrome the authors advocate using the popular Mr. Men stories by Roger Hargreaves. They describe a range of personality types such as Mr. Grumpy, Mr. Nosey and Little Miss Chatterbox. Another activity is encouraging the child to choose an animal that represents someone's personality. Older children can use adaptations of literature studies to identify the indications of personality type and how to respond to such people. It is important to help the child understand their personality and to recognise the type of person they are likely to get along with and who might become their friend.

Resources on Developing Friendship Skills

PRESCHOOL AGE

Baby Faces (1998) . New York, NY: Dutton Children's Books.

Conlin, S. & Friedman, S. L. (1991, 1993) . All My Feelings At Preschool. Seattle, WA: Parenting Press, Inc.

Funny Faces: A very first picture book (1996,1999) . New York, NY: Lorenz Books.

Hallinan, P. K. (1999) . Heartprints. Nashville, TN: Ideal Children's Books

Rogers, R. (1996) . Making Friends. New York, NY: The Putnam & Grosset Group

Offerman, L. (1999) . Little Teddy Bear's Happy Face Sad Face. Brookfield, CT: The Millbrook Press, Inc.

SCHOOL AGE

Brandenberg, A. (1993) . Communication. New York, NY: Greenwillow Books

Brown, L. K. & Brown, M. (1998). How To Be A Friend. USA: Little, Brown & Company.

The Care And Keeping Of Friends (1996) . Middleton, WI.: American Girl Library Editor, Pleasant Company Publications.

Conlin, S. & Friedman, S. L. (1989, 1993) . All My Feelings At Home. Seattle, WA: Parenting Press, Inc.

Holyoke, D. (1997) . Oops!: The Manners Guide For Girls. Middleton, WI: Pleasant Company Publications

Kipfer, B. A. (1994) . 1,400 Things To Be Happy About. New York, NY: Workman Publishing

Krueger, D. W. (1993). What Is A Feeling? Seattle, WA: Parenting Press, Inc.

ADULT BOOKS

Dimitrius, J. & Mazzarella, M. (1998, 1999) . Reading People: How to Understand People and Predict Their Behavior-Anytime, Anyplace. New York, NY: The Ballantine Publishing Group

Gabor, D. (1983) . How to Start a Conversation And Make Friends. New York, NY: Simon & Schuster

Gray, C. (1999, Spring) . Gray's Guide to Compliments. The Morning News, 11-1, 1-17.

Rubin, L. B. (1985) . Just Friends: The Role of Friendship in Our Lives. New York, NY: Harper & Row Publishers.

Mathews, A (1990). Making Friends: A Guide To Getting Along With People. , Singapore, Media Masters.

 

Mumbai Workshop
Indu Chaswal

Action For Autism and Forum for Autism Awareness (the parent organization in Mumbai) have had a great cooperative relationship for four or five years. This February we were invited to give yet another workshop for the parents and professionals from the 17 to 21 February.

A three member team from AFA left Delhi on the evening of the 16 of February looking forward to warm and pleasant weather in Mumbai after a two month long and hard Delhi winter. But, what we found more pleasant was the warm reception and response from the participants. It was very encouraging to have about 170 people attending the workshop from Mumbai and some other cities of Maharashtra and Gujarat. They were parents and professionals such as doctors, psychologists, special educators, speech therapists, and homeopaths, among others who got together in a very interactive group.

The driving force behind the entire event was a group of enthusiastic parents Bina Modak, Parul Kumtha, Alka Bagdadi, Munira Hussein to name just a few from Forum For Autism Awareness (FAA), and another organization, PACE that had joined hands with them this year. Then, there was Dr Vibha Krishnamurthy, who has been involved with FAA and is also helping families having individuals with autism.

The main focus of the workshop was sharing and educating the people about Autism and how it affects each individual child and sharing teaching and training strategies. The topics covered included dealing with challenging behaviours, and teaching daily living skills, communication, sensory defensiveness, and cognitive skills and more.

The fourth day was a break and we were taken to visit two new schools for children with autism that have recently started and sheltered workshops having children with Autism as well as other disabilities.

We resumed on the fifth day when parents of older children joined in to discuss legal issues, and the setting up of trusts, group homes and work skills training centres.

The five days were a wonderful opportunity to discuss Autism in their own social and cultural context and share information about things happening in others parts of the world. The AFA team was more than well looked after and we had a great time sharing information and experiences during the sessions as well as in the evenings spent with some of the parents.

CONGRATULATIONS to Forum For Autism Awareness and PACE for having organized the workshop so efficiently.

Helpline

Q. My four year son is suspected to have autism. He has been provisionally diagnosed by the All India Institute of Speech & Hearing, Mysore, as having autistic features. We had also taken him to AIIMS, New Delhi where Doctors are not too sure whether he can be termed as a pure autistic child. It is the opinion of some of the Doctors that he is a borderline case of autism, which can be cured by proper Behaviour Therapy. We are taking him to a clinical psychologist in Bhopal where we are currently staying.

I have heard lot of good things about AFA and would like to benefit from your experience in this field. Please advice and counsel me as a worried father of an autistic child.

A. Having conflicting diagnoses can be very confusing and distressing, but hard though it may be - it is important for your son's sake that you focus on what is important. It is not the label that matters but figuring out what your child needs and finding a way of helping him to compensate for or develop the skills he lacks. As autism is a complex disorder as well as being a spectrum disorder it is important for parents to spend some time understanding the ways it is likely to affect their child, so that if the child has a challenge in a particular area, then appropriate intervention can be delivered. Unlike a disability like blindness - where the skill area that is lacking is easy to understand, autism can effect the child
in so many different subtle ways that the parent needs to develop expertise to figure out the specific areas of challenge for their child. The good news is that with appropriate intervention all children with autism make progress - some more than others. It is hard to give a definitive prognosis for any child because each child's skill levels are different, and the environment the child lives in has an enormous impact on the child's progress. Rather than searching for a cure - look instead to train yourselves in affective teaching methodologies that have had proven success so that you can help your child compensate and develop the skills he lacks step by step, perhaps for a good part of his life. We would be very willing to help you and be your partners in your journey.

Q. I work in a special school and have two children with autism in my class. Sometimes I am not sure how to teach them. Do you hold any short training workshops or courses?

A. We hold very comprehensive workshops before or after Dussehra in Delhi each year, as well as a few at other times in the year. They are either given by teams from AFA in which case they are practical in content focussing primarily on training attendees on how to help persons with autism on a day to day basis. Or they are given by visiting professionals from Europe and the USA in which case they are wide ranging in their focus covering medical as well as educational issues. We also give workshops on request around the country - which are usually organised by the local Parent Support Group and supportive professionals working together. The AFA web site at: http//:www.autism-india.org has information on upcoming workshops as well as back issues of Autism Network in which you may find answers to some of your concerns.

Q. I came to know of Action For Autism from the local pediatrician. It restored my courage to some extent. My son aged three years and four months has provisionally been diagnosed as autistic at PGIMER, Chandigarh in September 2000. The tests done were MRI, EEG, besides which the psychiatrist asked questions to arrive at her diagnosis. Before diagnosis my son had no proper training due to lack of knowledge and lack of infrastructure. He wasn't pointing or speaking much, had almost no eye contact, and was hyperactive and restless. He has been taking a herbal medicine since June 2000.

After diagnosis the boy was sent to his uncle's place where unlike my home, there are boys of his age and his mother did as much as she could do to teach and train him. Within fifteen days he improved remarkably, such as using finger pointing, eye contact, language etc. From mid October he has joined a play school as directed by the psychiatrist and according to feedback received from the school he plays with other boys .

I have gone through your URL which is in question and answer format and it helped me a lot to clear my doubt but also created confusion. For example it suggests that autistic boys may be very sensitive to noise, touch, that they have sleeping problem etc. I also read this on the web site of TEACCH. This is not present in my son.

A. I am glad to know that you found our website useful, and that it 'restored your courage.' It is so important for parents to have hope and to know that though autism is a serious developmental disorder, with appropriate intervention all children with autism can move forward. As you have noted yourself, your son made progress when put in a stimulating positive environment. This progress can be accelerated by a focussed and structured program that uses things in his environment that motivate him, to teach him to communicate and interact. Many parents all over the world have successfully carried out home programs to help their children and there is no reason why you and your wife should not be able to do the same. AFA will be very glad to help you do so, as this is our focus.

For parents who live outside Delhi, we offer one week and three month outreach services. During this period, the parents can come in daily with their child, and while the child attends our model school, the parents observe and get training from our staff. We also have a Mother-Child Program, where mothers run a day school program where they work with their children and get feedback and suggestions from our staff.

You said you were confused by some statements on the web site that did not apply to your son. Autism is a spectrum disorder i.e. children with autism can have varying skill levels in different areas. What is common is difficulty in communication and social skills - but this too can manifest itself in very different ways. Many children with autism have problems in processing sensory information, in different ways. Some may have acute hearing, which may cause them pain. Some may have tactile issues, leading to sensitivity to textures or pain insensitivity, or difficulty with hair cuts or nail cutting or bathing. However not all children with autism, have these issues, and if your child does not have it - just be grateful! It is useful to know that these may exist, so that if you see some unusual behaviour, you can know that this might be a possible cause, and you will know how to deal with it.

There is no medicine that can cure autism. Products such as the one you refer to should be viewed as tonics at best, not medicines. The only proven method of intervention is a structured program based on behavioural principles. Your son will benefit, and you will feel more empowered by getting more informed and aware about autism.

We have a large collection of books on autism at our center where you may read at no charge. You can also access a lot of information on the net - but do try and visit good peer reviewed sites, or you can get overwhelmed by all the unproven theories on autism treatment that you may encounter on the internet.

Q. I'm a student working in an institution with persons with autism. I just wonder if you can give me some ideas about how to make autistic children's parents participate more and show more respect and care for their sons. I am trying to build a project for this institution.

A. Sometimes one does encounter families who appear not to particularly care about their children. This is as true of families with typically developing ('normal') children as it is of families that have a disabled child.

When the child is disabled the situation is a little more complex. I don't know how it is in Portugal, but in many traditional societies it was seen as almost shameful to have a child with autism or any other disability - physical or mental. In that sense one has to really work on social beliefs.

When we want to help parents change the way they feel about their child we have to start by not judging them for their attitude. No one of us can really know what it might be like for any family to have a child with a disability. Any disability. Each one of us has certain aspirations and expectations of our children. Often these have to be set aside completely. That is not the easiest of things to do.

With autism sometimes the situation is complicated by the fact that the children often appear not to understand anything - when in fact they do understand far more than they are given credit for. They may appear not to be aware of their families. They may have a difficulty, because of their sensory difficulties, in being able to deal with physical shows of affection that involve physical contact and so on. Further complicating the situation for parents is the fact that the children usually 'look normal'

In this situation there are two things that we find work: firstly, giving parents a clear understanding of autism and the unique ways in which it affects their child; secondly, taking them through a few simple awareness exercises that helps them see the world through their children's eyes and thereby understand how difficult and stressful the world is for their autistic children. We find this method very effective. It makes parents really sit up and say, "I never knew it was like this!"

Q. My grandson is autistic and cannot talk though he is four and a half years old. He used to talk when he was two years old. He has had a traumatic birth, and stopped talking or even babbling after an occasion when my daughter insisted that I take him for a holiday to my beach bungalow, where he played hell with me and kept crying the whole night. Next I knew that he was running high fever and became very sick. I packed him to his mother the next day early morning, but I have noticed ever since then he stopped talking or even babbling. Though after surfing the net, I have a feeling that autism may be because of neglect by the parents. He has also had a trauma because of his teeth which had to be capped and a tongue tie which had to be clipped.

My daughter had been taking him to a speech therapist. We have now put him on to a homeopath doctor, and there are signs of improvement. Eye contact is slowly improving and he is responding to actions. But he likes to open and close doors, and is very aggressive with the younger sister who is two years old. He will suddenly push her down or pull her hair. He even does this to other little children and some of us in the family. I would like to know whether he should be corrected, by reacting in the same way towards him. My daughter does that, and I tell her constantly not to shout or yell at him or lift her hand on him, but to talk to him firmly and lovingly. I believe the teacher in his school has told her to react in this fashion. Please enlighten us. Will he turn normal like other children?

A. It is clear that you are a very concerned grandmother, and have good instincts about appropriate ways of helping your grandson. You can be a huge help to him and his mother. However it will require that you spend time understanding the complexity of the handicap your grandson has, and are able to be patient and understanding with your daughter, while she takes time coming to terms with her grief, and is able to help her son in a positive manner.

I need to first correct some misconceptions that you seem to have about autism. Autism is a neurological developmental handicap that primarily affects the social and communication skills of the child. As such it is fairly common, that the signs begin to be noticed only around the age of two, and parents typically think that the child has regressed at that time, and tend to blame myriad circumstances that coincidentally happened at that point of time, as the reason for the regression.

Thus a new sibling, an illness, a change of diet or place of stay, the mother going back to work etc are often erroneously thought to be the reason why the child suddenly seems unresponsive. Actually it is just that the child's lack of social reciprocity is more apparent at the age of two when a neuro-typical child starts using a lot of functional forms of communication to explore his world. Thus a single visit to your beach bungalow, or your perceived parental neglect or the dental and tongue tie issues could not be the reason for his autism.

On the other hand his autism could well be the reason why he 'played hell' with you - as children with autism often have difficulty coping with a change in schedule or surroundings. His lack of social reciprocity would make it difficult for his parents to be warm and affectionate with him. Children with autism often battle with sensory defensiveness - i.e. a hyper sensitivity to certain textures, sounds, tastes etc - which may have made him resistant to hugs and the typical social overtures that parents make, that gradually build the bond between them.

Autism effects the ability to understand social rules and both verbal and non-verbal communication. It would have been hard for your daughter - without an understanding of why her child was not responding to her overtures, and the usual means of engaging his attention and getting him to listen to her - to not get dejected and feel unable to cope with the stress of bringing him up. The diagnosis of autism with the typically bleak prognosis that is usually given, would have only deepened her level of distress, and that would explain why she reacts in inappropriate ways to his behaviour even though she has been told more appropriate ways of dealing with the issues.

This is where you can play a huge role. By being supportive and understanding, perhaps giving your daughter some respite, and by becoming more and more knowledgeable about autism and the effective behavioural intervention methods that exist for working with children with autism, you can be a real support and help for her. Give her time to come to terms with her very real grief, and also give her hope.

With a sustained, consistent, structured behavioural intervention program all children with autism show real progress. How much each child progresses is dependent on that child's ability and the environment the child is growing up in. What we can do is maximize his potential by giving him the most positive and nurturing milieu in which he can do so. For us to make that possible it is important that we deal with our stresses, come to an aware acceptance of autism, and decide to do whatever needs to be done in a truly positive way.

 

Letters to the Editor

I have been working with autism for the last 25 years. My Background is in Special Foundation, and Special Education. I have been planning curriculum and training teachers in one of the schools for autism and am intrigued by the way children with autism learn. Action For Autism and Open Door's integrated way of working with students and families is similar to ours. We try to find the most beneficial way of working with our children by accommodating their unique style. I want to congratulate you for the school, which seems like 'made to order' for the students with autism and their families.

S S. JOSHI
New York

 

I have attended your workshop on Autism in September - October 2000. It was very helpful and
I find a lot of improvement in my child.

R DEO
Nagpur

Thank you for a most worthwhile www address and link for autism and for including our address/ contact details in your website. Through it we were found by someone looking for information from Germany - so the world is getting rather small....!

PETRA DILLMANN
Autism Society of Namibia

I am a pediatrician originally from Hyderabad, India currently working in New York, USA . We have a five year old son who has been diagnosed PDD. He has been attending Special Education since he was 18 months. We are planning to come back to India, where he will benefit from enormous social interaction with family members and relatives, here in the US he is missing socialization. I thank you Action for Autism members for doing a wonderful job for the support of children with autism and also their families.

DR S. S BENNURI MD
New York

 

Help Us Help You!

We are happy to reply to all the mail that we receive. However, we are very short staffed, under funded and over worked. In general a postal mail is likely to get you a faster reply - for administrative reasons - rather than email. Also given the large numbers of email we receive every day, there is always the possibility of an email message getting overlooked.

So please do try and write through the post in order to be assured of a quick reply.

Announcements

Every month Action For Autism mails out 1,200 copies of Autism Network. As the numbers being mailed increase so do complaints from readers about non-receipt of the journal. Some of our readers suggested that since large numbers are mailed together, copies of the journal are perhaps being unscrupulously taken away in the mail and the stamps being removed. So that if someone takes away 50 copies of the journal he gets Rs. 100 worth of stamps. Since we can find no other explanation for the missing copies we feel this might indeed be the reason. We therefore spoke to a corporate house which very kindly agreed to frank the journals for us. However, after a few hundred had gone through, their post office refused to allow the rest of the copies to be franked as they were not the organisation's publication.

So now we are back to square one. We would be grateful if any of our readers can come up with a solution.

Annual Training Workshop
October 18, 19, 20 & 21, 2001
INDIAN SOCIAL INSTITUTE, LODHI INSTITUTIONAL AREA, NEW DELHI

ACTION FOR AUTISM announces its Autumn 2001 training programme for parents and professionals.

The workshop is open to anyone who wants to understand Autism, the myriad ways it affects individuals, the methods used to teach them cognitive, self-help and social skills, and most important how these skills can be taught. Like all AFA seminars and workshops, the sessions will be free of jargon, and will be illustrated with practical examples based on AFA's hands-on experience and exposure to children with autism of varying ages and across the spectrum. They will follow a format of lectures, video clips, question and answer sessions and discussions.

o Individual consultation for families will be provided on the last day of the workshop. The consultations will be available to those families who make prior bookings - so do book well in advance.

o Daycare will be provided during workshop hours for those who find it difficult to leave their children at home. Bookings must be made with Action for Autism well ahead of time. AFA will collect the children from the Indian Social Institute, take them across to the daycare venue, and bring them back to their parents at the end of the day. Information about your child's special needs will need to be given at the time of booking so that adequate preparations can be made.

Registration Costs:*
PARENTS
o Rs. 1000/- per parent attendee (Rs 800/- for members)
o Rs. 1700/- per couple (parents only) (Rs 1400/- for members)
NON-PARENTS
o Rs. 1500/- per non-parent attendee (Rs. 1200/- for members)
o Rs. 1300/- for each attendee from an organisation that has taken membership if more than one person attends.
DAYCARE CHARGES
o Rs. 200/- per child, per day.

Accommodation can be organised at the ISI for a limited number of attendees on a priority basis. Rooms will be available from noon of 17th to noon of 21st October, at
Rs. 1500/- per bed (twin sharing) and Rs. 3000/- for a double room for a four-night stay with breakfast.
Last date for booking accommodation: 1 September, 2001.

Note: Only those who have paid the sum of Rs. 500/- for annual subscription or Rs. 5000/- as lifetime membership are eligible for the discounted 'members' rate.