Page One | Andrew: Interview with a Person With an Autistic Spectrum Disorder | Stereotyped Repetitive Activities | Guddu: our Special Child | Friends | The Case for Social and Behavioural Intervention Research | Georgianne Stehli Thomas Visits India | Inclusion | Book Reviews | Helpline | Letters to the Editor

N E T W O R K

April 1997 Vol. IV, No. 1

Page One

Welcome to the first issue of 1997. This is the fourth year of publication of Autism Network and we are very pleased to note our growing readership and the increasing interest in the journal.

What is particularly heartening is that you, our readers, have been so appreciative of our efforts to keep the focus as practical as possible. In addressing concerns that relate to the day to day, every effort is made to base those on actual experiences: at our resource school Open Door, and on the results of our efforts at counseling families. We receive requests for specific issues of Autism Network that perhaps carried topics of particular interest to particular readers: for instance, issues that carried the articles on toilet-training appear to be very much in demand and we receive repeated requests for those.

In continuation of our efforts to put forth the situation facing persons with autism and their families in the country, in February we had the second of our meetings with Mr K K Bakshi, Secretay in the Ministry of Welfare. The meeting was also attended by Mr. D K Manavalan, Additional Secretary, and Mr. A K Chowdhury, Joint Secretary, Ministry of Welfare.

We have had a few interesting visitors recently.  Judy Lusty, Chairperson of the National Autistic Society of UK was in Delhi, as was Georgianne Stehli whose story 'The Sound of a Miracle' is familiar to many of our readers..

Because of a staff crunch we were unable to hold the training workshop for professionals that we had hoped to conduct in the first half of the year. However, the Second AFA Training Workshop that will be held in October, we hope to open to parents as well as professionals.

Andrew: Interview With a Person With an Autistic Spectrum Disorder

from 'Beyond Rain Man, Experiences of and Attitudes Towards Autism'
National Autistic Society

It is seven years since the film 'Rain Man' bought the condition of autism to a wide public. However it is over forty years since autism and Asperger’s syndrome were officially recognised in Britain. That country is now living with the first generation of people who have had an official diagnosis of Autism or Asperger’s syndrome, with the oldest being approximately in their late forties. There are currently in the region of 322,500 people in the UK with an autism spectrum disorder.

In 1986, The National Autistic Society (NAS) of UK, commissioned a wide-ranging research to investigate current levels of awareness of, and attitudes to autism. The NAS is keen to represent the views and experiences of people with autistic spectrum disorders through their own eyes and in their own words whenever possible. Therefore as part of the research, interviews were conducted with people with an autistic spectrum disorder and their carers.

Due to the constraints of this present research, the people interviewed were adults at the higher end of the spectrum-- thus the interviews are not necessarily representative of all people with an autistic spectrum disorder. In the near future, The National Autistic Society will be expanding this type of research to include the experiences and views of people from various parts of the autistic spectrum.

Andrew is one of the high functioning autistic adults who was interviewed for the purposes of the survey.

Andrew is in his early twenties. He is currently living at home with his family. He was diagnosed with Asperger’s syndrome around a year ago, having had difficulties for most of his life as described by his mother:

“We knew he was very unhappy at school and had huge problems relating to people, and was very  depressed, very unhappy…he was bullied, he was teased, he was constantly tormented.  And we did not quite understand because we didn’t understand the nature of his difficulties.  On the whole he was just very quiet, very withdrawn and extremely unhappy, and you can go on for a long time thinking, well, he’s a late developer.”

Despite a difficult time at school, Andrew left with good academic qualifications and gained a place at university, leaving home to start his degree course:

“He thought that once he got in with very intelligent people they would recognise his intelligence and again he was bullied and he was teased and he was very disoriented I think, being away from home...he became quite ill and ended up in hospital with acute depression. He came home then and was treated for depression and then went back and had another try and just keeled over ….it frightened him - the intensity, social pressure - all these people - and had we but known- it was the worst possible thing for him.”

Andrew returned home. He was eventually diagnosed as having Asperger syndrome following a television programme which he and his mother had seen.

“It’s been much easier for all of us since we know…for the first time now we can all stop thinking ‘why isn’t he doing as well as he ought to be?  …It’s only when I see him with strangers that I realise it’s still there ….if you see him with people he is comfortable with, he’s very witty, very intelligent, extremely funny.  But with strangers you see the shoulders go up, the head turn and you can see the failure to cope with the situation.”

 For Andrew the diagnosis provided a name for something he’d always known he’d had:

“It’s as though you had spent all your life being able to use both hands with equal facility and then someone tells you ‘you’re ambidextrous you know’, and you say ‘I am? What does that mean?’ and they say ‘It means you can use both hands with equal facility’….”

He described the difficulties that has as follows:

“The word autism comes from the Greek autos - self, and is supposed to suggest someone closed in on themselves. Unfortunately I don’t really  have a self so I don’t really know what it is…”

“I lack, first of all, the capacity to interpret other people’s non-verbal communication in terms of voice, eye-contact, body language etc., partly because I’m not looking - and difficult to form any sort of idea about what the other person might be thinking - I have to be told - one thing you can rely on I guess is that when someone laughs, they’re probably amused. …And we’re extremely shy and timid and unwilling to be touched - we’re obsessive. Most of us have no sense of humour,  in which case I suppose I have been lucky because I do. I’m unselfconscious about the wrong things and self-conscious about the wrong things. And alone. People always tell me that I give the impression that I want to be alone, and I don’t necessarily, they ought to ask….’

His mother also speaks of her  fears for Andrew:

“If I see an ambulance in the road, or a police car, I think something’s happened to Andrew’  - and it’s always there - the feeling that he’s extremely vulnerable - and he’s been attacked, he’s been mugged, he’s been stabbed …..”

Having lived most of his life to date without a diagnosis, Andrew has encountered many difficulties,  particularly in relation to other people :

“The whole experience has soured me a great deal - in fact  almost all the people who spoke to me at all did so to tell me that I was worthless, that  I was a freak. Now either they were right or they were wrong. If they were right, I ought  to hate myself - but if they were wrong, I ought to hate everyone else for telling me this. I once overheard a boy from this village telling a newcomer to the village all about me - how I was mad, and would attack people on sight without any provocation and fight them and how I took lots of drugs, and how I was gay and how I ought to be in a mental institution….”

“Since I clearly am a freak, everyone must treat me the way they treat freaks ….it’s just that some people have the courage and the patience to stick with me for a while and find out that although I am unusual, that encompasses sometimes being nicer or intelligent than normal people."

At the time of the interview, Andrew was about to start university. This will b e his third attempt, but his first since the diagnosis of Asperger’s syndrome. Instead  of moving away, Andrew will attend a local university and continue to live at home while he studies. In addition welfare officers at the university are aware of his difficulties and are working with him and his family in an attempt to make things as easy as possible for him. Andrew is not looking forward to university, but he wants to study.  His hopes and
aspirations are similar to other people his age:

“I want what everyone else wants - money and position, and love and a job I enjoy, and having done something worthwhile …..”

Guddu:  Our Special Child
Radha Palchowdhury, Calcutta

My son Guddu is a 15-year-old autistic boy with distinct autistic behaviour.  When he was small he never liked to be in groups, which we didn't take very seriously as we misunderstood his behaviour as normal behaviour.  He used to go to a normal school in Delhi when we came to know the heart-breaking truth: our only son, Guddu, is an autistic boy.

With high hopes that Guddu and we will overcome these problems, like other parents, we started giving him training in a special school under the guidance of special educators.  Now, we have accepted his problems as part of our life.

Guddu was very hyperactive at the ages of 5-8 years.  At that time, banging on doors and windows and snatching food from others were among his behaviour disorders.  These have lessened gradually.  Our main problem these days is Guddu's screaming.  He is unable to communicate since he does not have speech, and our life has become very difficult.  Guddu jumps around making unusual sounds continuously, whenever he feels like.  We have realised that this is his way of expressing joy, but it must be irritating for other people around.  This phase of behaviour persists for about two weeks after which he remains quiet for a long time.

Our exprectations from Guddu have become so limited that sometimes we wonder at how little we want from him.  Sometimes all we want is, "Let Guddu not make irritating sounds today," "let Guddu sleep well today," irrespective orf whatever he is learning in school.  We allow Guddu to indulge in some of his behaviours-- allow him to dance or jump for a short while in his room so that he gets an outlet.  The only bond between us seems to be music.  Guddu is fond of food and music.

I did a parent-child five month training course from Nambikai Nilayam, a unit of Christian Medical College, Vellore, which helped me in realizing his condition and think positively about what can be done for his betterment.

Some of us parents have formed a group.  We call ourselves Bodhayan and meet on every Saturday.  Here we work with other children, realize their disability and share experiences.  Here we see and judge our children's behaviour from a new angle.  This mixing and sharing leads to a very positive attitude and outlook.  Sometimes, interaction between parents of autistic children leads to a solution of their problems regarding handling autistic children.

We, Guddu's parents, attend social gatherings mostly with Guddu, because we have a long way to walk together.  We meet many inspiring people because of Guddu.  He is a blessing in disguise, our special child.

Stereotyped Repetative Activities
From 'Treatment of Autistic Children', Patricia Howlin and Michael Rutter

Obsessive behaviours in autistic children often begin as fairly mild problems in early childhood and, because the children have so few other abilities or interests, parents often make little attempt to stop them.  However, as children get older, the rigidities in behaviour often become marked; routines and rituals spread to incorporate an increasing range of the child's (and familiy's) activities, and the entrenchment of stereotyped and repetitive patterns of behaviour becomes increasingly disruptive.  Direct attempts to prohibit or suppresss long standing routines, rituals and stereotyped patterns of behaviour are rarely effective.  Instead, just as the ritualistic behaviours have grown gradually over the years, a progressively graded introduction of change seems to be the best approach.  In some cases this involved restricting the child's opportunities to indulge in ritualistic behaviours; in others, it involved systematic modification of the behaviours themselves (Marchant et al., 1974; Hemsley et al., 1978).

Many children spent a great deal of their day involved in repetative, stereotyped, apparently compulsive activities of one kind or another.  These included the frequent touching of particular objects, or placing them in endless lines.  Our primary aim was to reduce the adverse impact that such behaviours had on families by gradually reducing their severity or frequency.  Stevie, for example, spent almost all his time lining up his foreign coin collection.  Trails of coins filled the living room, the kitched, went up the stairs into the bathroom and through the bedrooms.  Attempts by his parents to remove these coints, or their accidental displacement if his parents tripped over them, resulted in extreeme distress.  To begin with, therefore, his parents attempted to restrict the amount of space in the house taken up by this activity.  Initially he was allowed to carry on making his lines of coins in all the usual rooms except one.  The particular room chosen in this case was the bathroom, because Stevie loved baths and was only allowed to have a bath if no coins were found in the bathroom.

Further restrictions were then gradually introduced.  Thus, if he was to be allowed to get into his parent's bed in the morning, no coins were placed in their room.  Subsequently, if he wanted some of his favourite snack food, no coins were to be found in the kitched.  Eventually television, too, was restricted if any coins were found in the living room.  In this way his freedom to line up coins was very gradually reduced, until the only places where this was allowed were the hallway and stairs (which were rather chilly, particularly in winter) and in his own bedroom.  He continued to spend some time playing with his coin lines in his own room, but as he also enjoyed the company of his mother and father, the amount of time he spent alone in this way was always fairly brief.

Slight variations on this theme have been used with other children.  One of Matthew's many obsessions was lining up cars.  This was reduced by insisting that the number of cars in a line at any one time be gradually lowered.  Instead of spending his time lining up 50 cars or more, the maximum allowed was reduced to 20.  Then is was reduced further to 10; then to 5 and eventually to 2.  Although this resulted in pairs of cars being dotted at intervals around the house, it greatly reduced the disruption that had formerly ocurred if his lines were broken in any way.

Duncan's stereotyped motor mannerisms were dealt with along similar lines.  These had begun relatively simply as a nod of the head accompanied by rapid eye blinking, but at the time of intervention involved a complex sequence of facial grimaces accompanied by hand flapping.  In his case, restrictions were imposed on the amount of time per day that he was allowed to indulge in these activities.  First they were prevented at mealtimes which he enjoyed.  (This was achieved by removing his food as soon as he began to flap or grimace.)  Next, such behaviours were forbidden in the bathroom, and he only got his bath, which he loved, if he did not exhibit any manneristic behaviours.  Then the behaviours were discouraged at times when he was actively engaged with his parents, as in playing or reading stories.  Still later, the behaviours were discouraged whilst he was watching television or listening to records.  In this way, although the mannerisms did not disappear entirely, they did not occur at times when he was otherwise occupied.

Because parents could not be exprected to spend the whole of their time in highly structured tasks with their child, and because of children's lack of spontaneous enjoyment in normal activities, it was felt inappropriate to restrict their enjoyment of more ritualistic activities entirely.  Therefore, once these had been reduced to an acceptable level and did not interfere with the rest of the family or with the child's own abilitiy to take part in other activities, they were tolerated, especially at times when the child had to be left alone.
 

Friends
Sandra Dawson, Teacher, Open Door

"The main work of friendship consists of tasks such as bracing each other up to face the unfairness of existence and getting through the tough times."

I’d like to introduce you to one of my best friends. We spend a lot of time together as most friends do. I travel with him to work and am always happy to see him. We talk about almost anything you can think of, from the weather to what  makes the world go round!!  He likes taking a walk with me, and tells me about things he observes on the way. He also tries to be the perfect gentle man, remembering to hold the door open whenever he remembers.  My friend is 16 years old. My friend is autistic.

You know, just because a person is different, because of his or her autism, does not mean they do not love and want to be loved. They want and need friends just as much as you and I do. We often take this as a negligible need and do very little to help. The fact is that, because autism affects social development, autistic people are not able to develop strong relationships with their peers. But since they do desire to make, and have friends, we can help them to do so.

One of the reasons I became really comfortable with my autistic friend so quickly was that his mother was so comfortable and accepting of his difficulties. That is why it is so important for parents or caretakers to be accepting of the child and matter of fact about the disability. It helped me to focus on the person instead of the disability.

It will of course take some planning and effort on our part. If your child with autism goes to a school of any sort, there is every chance that he gets left out of most group activities, especially games. There is also a good chance, that if he goes to a mainstream school he is made fun of or ridiculed. This is because most of the time, it is adult opinions and values that filter down to children’s minds, creating negative feelings towards different people. That is why we need to begin by being totally accepting and comfortable about the differences in children, especially children with disabilities.

Children make great friends if they have the correct attitude that friends emphasise each other’s strengths not their faults. Attempts by other children to be friendly might have been met by silence and ‘Hellos’ may not have been acknowledged. As a result, peers often view autistic children as ‘rude’ or ‘snobbish’ when they are actually just trying to cope with the noise, smells and movements around them.

Social inappropriateness can cause others to avoid autistic children. For instance if the best way an autistic person knows to get someone’s attention is to yank their face towards them, and he does that to another child, it will probably get a very negative reaction. Communicative difficulties can also cause misunderstanding, for example,  an autistic child is asked if his pen could be borrowed and he says ‘NO’ when he actually wants to say ‘I don’t have one’ or ‘Mine is not working’. Children are also attracted to other children who constantly think up new games and are very adventurous and who have wildly imaginative ideas. Autistic people have difficulties in this area of imagination and so naturally don’t attract the attention of others.

So it would be a good idea if you can visit your child’s school a few times. Talk personally to a few children and tell them how he is a child just like them with a few differences and help them to be friends with your child. Maybe one of the children who is in a position of leadership, like the ‘monitor’ of the class, can adopt your child as their friend to take care of him. The responsibility will make the other child, feel important and needed too. You might need to go along with your child for a while. It would be great if you can get permission to be with him in every class, other than academic sessions. That way, during play time, free periods, lunch breaks etc you can accompany your child and his friend and help them to feel comfortable with each other. Two or three new friends would be a better idea than just one, so that even if one is separated from him, on the off chance that he leaves school, changes class etc, tour child will still have a couple of friends to play with.

If your child has a brother or sister, it would be a great idea if they can include their autistic sibling in activities with their friends. It would provide an excellent opportunity to interact with a group of regular children. Let them come to your house to play, to make it easier. When you are explaining your autism to them, remember to explain why he does some of the things he does, the sensory  sensitivity or the inability to cope with a lot of movement (say at recess or games periods when there is a lot of unstructured activity, unlike morning assembly times) and his lack of social awareness. So if they have tried to be friends with him and he has not responded, let them know that its not because he’s rude, but because he doesn’t know how.

One can’t of course expect this interaction to just happen. You might have to go through a few simple steps to help them feel comfortable together. Your child could begin by just being in the same room with them, so he gets familiar with them. He could also be given something to play with. After some time he could be given a set  of toys similar to the ones that the other children are playing with. Let him then just play side by side. A little later he could be encouraged to play with toys that need to be shared. So he can be allowed to take one of the toys that are being shared and if he wants another one, then the first toy has to be put back. Also of he wants one that the other child has then he has to wait till the other child has finished with it. This can slowly build up to him joining with the others for a group game. It may be just the passive involvement at first, but he may soon start actually participating.

Many autistic people do not have siblings and do not attend any school either. So you can get people to come and spend time with him or her. Create a small poster with a picture of your child, and a few lines about him underneath. Highlight the fact that he needs someone who can spend a few hours a week with him. If you do get a response, make sure you spend some time talking to the person about autism, so that he or she becomes aware and understands why your child is the way he is. The person can come in once or twice a week and spend an hour with your child. The hour could be spent doing a series of activities like reading together or listening to music or even playing a game that is enjoyable ( ball etc.)
 

The Case for Social and Behavioral Intervention Research
Laura Schreibman, University of California, San Diego
Journal of Autism and Developmental Disorders Vol 126, No 2, 1996

Recent years have provided some of the most exciting work yet in the field of autism. Particularly exciting is the work in the biological and neuroscience arenas which hold potential for understanding the various underlying bases for what we call autism spectrum disorders. Such work supports the fact that since autism is a behaviourally defined disorder, it may in fact be made up of a group of subdisorders, each with a distinct etiology, ofcourse and prognosis. This would certainly help explain the oft-noted heterogeneity in the behavioural manifestation  of autism, the variability of response to behavioural  and pharmacological treatment, and the varied prognosis noted in this population.

One major implication of this biological work is that we are unlikely to find a single cause or a single “cure” for autism. What this means is that despite hopes to the contrary, we are unlikely to find a single “magic bullet” effective treatment. We are dealing with a very complex set of disorders and this complexity will inevitably translate to many specific treatment prescriptions.

We must also recognise several other facts. First, despite the exciting progress being made in the biological fields, it is virtually certain that identification of confirmed causes is not imminent. Progress in these areas is careful but it is necessarily slow given the nature of the science. Second, the identification of a cause does not necessarily mean a treatment will be suggested by such knowledge. The cause may not be something we can “fix,” at least not for many years to come. Third, the reality is that by the time we have identified and developed effective treatments based on biological findings, there will be many, many children born with autism spectrum disorders. What will the options available for them? Or for children living now?

As much as we would like to find the biological etiologies of autism, we as yet have not done so and thus we have no truly generally effective treatments based on a biological model. We do, however have effective treatments based on the behavioural model. In fact, the only form of treatment that has been empirically validated to be effective with this population is that based upon the behavioural model and these treatments are advancing in effectiveness and comprehensiveness at an impressive rate( e.g. Bregman & Gerdtz, in press; Schreibman, in press). Indeed, it is apparent that progress made via behavioural research compares very favourably with progress in biological research. Essentially, it is to social and behavioural interventions that people involved with helping children and adults with autism have looked for direct assistance; it is here where people currently look for treatment options; and it is here that where we will continue to look for years to come.

Let us take a look at what research in social and behavioural intervention has accomplished in the past 30 years. In the late 1960’s when this writer first entered the field as a student, the majority of individuals with autism were institutionalised by the time they reached adolescence. This was because we did not have effective treatments to help them learn and adapt to their environment, we had no effective methodology to help parents maintain them at home, and we had no school programs specifically fitted to their needs. In fact, at that time we had a relatively minimal understanding of what the specific needs and characteristics of the children were except that they needed to increase their language, social, play and academic skills and they had to stop engaging in stigmatising, disruptive and/or dangerous behaviours. In essence, we had a pretty good idea of the questions, but had only begun to seek the answers.

Thirty years later we can now report that far, far, fewer individuals with autism require placement in highly restrictive environments (e.g. institutions). We have developed  effective treatments, effective parent-training programs, and we have equipped schools with educational technologies geared specifically to the child with the autism spectrum disorder. Behavioural research both basic and applied, has allowed for the development of truly effective treatments. Basic research has allowed us to understand many specific human and environmental variables that relate to, and impact, the effectiveness of various treatment procedures. To illustrate, basic behavioural research has suggested the debilitating  effect of specific attentional deficits in this population (e.g. Lovaas, Schreibman, & Koegel, & Rehm, 1971). This led to applied research resulting in the development of procedures allowing teachers and clinicians to design training programs that either allow the child to learn despite the attentional deficit( Schreibman, 1975) or remediate the deficit allowing the child to learn in a more normal manner( Schreibman, Charlop, &Koegel, 1982). In another example, functional analysis procedures have allowed for the identification of the communicative nature of many challenging behaviours in this population. This has led to programs of  “functional communication training” that serve to eliminate the disruptive behaviour and replace it with effective communication skills (e.g. Carr & Durrant, 1985). The important result of this work has been not only the significant decrease in the use of intrusive, reductive interventions. These are but a few examples where directed, empirical research focusing on the specific needs of individuals with autism has led to improved treatment.

Another example of the forward advances of social and behavioural interventions is the increasingly comprehensive nature of treatment. The behavioural community which first identified systematic treatment effects in terms of increases in single target behaviours has been able to progress to the point where treatments are substantially more comprehensive, efficient, and generalizable, affecting larger behaviour aggregates. In essence, the treatments are more generally effective. We no longer speak in terms of degree of change in individual behaviours. Rather, we can now speak in terms of overall improvement in the quality  of the individual’s life. Research directives to follow can certainly be expected to result in a larger array of treatment options and improved treatment outcomes.

We can be proud of what social and behavioural intervention research has accomplished but we cannot just step back and admire our work. What we need now is to take the tremendous amount of information we have accumulated, and use it to develop more effective, efficient treatments that can be readily implemented by clinicians, parents, teachers and others who serve individuals with autism. We have the methology to continually develop, refine and disseminate our findings and we can focus these resources on the important research challenges that lie ahead.

One such research challenge relates to the fact that while behavioural research has provided effective treatments, it has been the case that treatment responsiveness varies greatly across children. This situation requires a substantial research initiative that takes into account important child variables, environmental variables (such as family and state[nutritional, drug status] variables), and treatment variables and to study the interactions of all these with the goal of developing individualised treatments leading to optimal benefit for each child. Child variables to be considered include, among others, chronological age, degree of cognitive impairment (e.g. mental retardation or other comorid state), verbal ability, autism subtype, presence of certain forms of disruptive behaviour, and neurological status (e.g. presence of seizures). Family and environmental variables to be considered include parental stress/depression, parental expectations, marital status, culture, school resources, and so forth. Treatment variables include, for example, the nature of specific procedures, early versus later intervention, and intervention intensity. Essentially given the information supplied by these variables, and their interactions, we would be in a position to provide maximally effective and efficient treatment on an individualised basis.

Recent work on important child variables involves research in the biology of autism spectrum disorders. Very promising new research directives are focusing on child variables in terms of biological status and how such status may effect behaviour. This ofcourse, has direct implications for the design of effective treatments. For example, recent information about neuroanatomic abnormalities and attentional deficits(Courchese et al.., 1994; Townsend & Courchese 1994) has direct implications suggesting that different instructional procedures may eventually be  to the child’s neuroatomic status. Research initiatives to pursue the study of such important biobehavioural ties will serve to more fully develop important lines of joint research.

The social and behavioural intervention scientific community is firmly committed to scientific inquiry and to the development of effective, efficient, and user-friendly treatments to maximise the potential of individuals with autism spectrum disorders. Much has been accomplished yet much remains to be done. Support for intervention research is essential for our continued efforts at maximising the potential and quality of life for these individuals who indeed depend on us for a brighter future.

References
-Bregman,J. & Gertz,.J(in press) Behavioural interventions. In D.J. Cohen & F.R.Volkmar (Eds), Handbook of Autism and Pervasive development disorders, (2’nd ed). New York; J. Wiley.
-Carr, E.G., & Durand, V. M(1985) Reducing behavioural problems through functional communication
training, Journal of Applied Behaviour Analysis, 18, 111-126.
-Courchesne, E., Townsend, J., Akshoomoff, N.A., Saitoh, O., Yeung-Courchesne, R., Lincoln, A.J., James,
-H.E., Haas, R.H., Schreibman, L., & Lau, L.(1994). Impairment in shifting attention in autistic and cerebellar patients. Behavioural Neuroscience, 108, 848-865.
-Lovaas, O.I.Schreibman, L., Koegel, R.L., & Rehm, R.(1971). Selective responding by autistic children to
multiple sensory input. Journal of Abnormal Psychology,, 77, 211-222.
-Schreibman, L. (1975). Effects of within-stimulus and extra-stimulus prompting on discrimination learning in autistic children. Journal of  Applied Behaviour Analysis, 8, 91-112.
-Schreibman, L. (in press). Theoretical perspectives on behavioural intervention for individuals with autism.  In D. J. Cohen & F. R. Volkmar ( Eds.), Handbook of Autism and pervasive development disorders, ( 2nd ed.). New York: J.Wiley.
-Schreibman, L., Charlop, M.H., & Koegel, R.L. (1982). Teaching autistic children to use extra-stimulus
prompts. Journal of Experimental Child Psychology, 33, 475-491.
-Townsend, J., & Courchesne, E.(1994). Parietal damage and narrow “spotlight” of spatial attention. Journal of Cognitive Neuroscience, 6, 218-230.

Georgianne Stehli Thomas Visits India

Many of our readers are familiar with Annabel Stehli's account of her daughter Georgianne's emergence from autism, in her book 'Sound of a Miracle.'  Georgianne Stehli, who is now Thomas and soon to be a mother, was in India in the latter half of January.  She was travelling in the company of Saroj Madan who was visiting in her professional capacity as a practictioner of Auditory Integration Training.

In Delhi on the first leg of their trip, parents had the opportunity of meeting Georgianne for an informal evening.  The next day both were scheduled to speak at the All India Institute of Medical Sciences.  While Saroj spoke on AIT, Georgie spoke in a somewhat biographical strain to the audience of doctors, interns, and some students of psychology, in an effort to explain the difficulties that persons with autism face in the everyday world.  She followed this ip with a discussion of the recently published, 'Teacher's Guide for Higher Functioning Adolescents and Young Adults with Autism,' for which Georgianne has done the illustrations; illustrations that explain the writer's concepts with remarkable clarity.

From Delhi, they went to Bombay, where Beena Modak, a very active Bombay parent, had organised a meeting for them with interested parents.  From Bombay, they traveled down to a small town outside Trivandrum where Georgianne again shared her personal experiences and discussed the 'Teacher's Guide.'  Then back again to Delhi.  Despite the hectic traveling and her advanced stage, Georgianne had the enthusiasm and the energy to travel to see the Taj, which she loved, and to visit Jaipur.

Coming from the quiet and well organised Orgeon, it was clear that Georgianne found India interestingly exotic.  In fact, she happily extended her stay beyond what she had originally planned.  For us it was an exciting experience meeting with Georgianne.  Her remarkable social and communication skills were evident as she shared with us glimpses of her life and her work.  Apart fom her work as an illustrator, Georgianne Thomas also teaches art to learning disabled children.  It was interesting to learn that she found working with learning disabled children far more fun and satisfying than working with regular children.

Our warmest thoughts go out to Georgianne Thomas the artist, spokesperson for autism, homemaker, and soon-to-be mother.

Inclusion

The UNESCO Salamanca Statement of 1994 affirms the right of every child to a good education. Endorsed in 1994 by the representatives of 92 governments and 25 international organizations at Salamanca. Spain, its guiding principle is the accommodation of all children in ordinary schools.

Not only would such a measure be cost effective, it would also tackle the discriminatory attitudes towards disability that children grow up with and carry with them into adulthood. Segregation teaches children to be fearful, ignorant, and breeds prejudice. Inclusion has the potential to reduce fear and build friendship, respect and understanding. However, given our current situation in terms of societal attitudes and the prevalent system of education, in order to work towards the implementation of such a system there are many areas that are to be taken into consideration and tackled with a multi-dimensional approach.

These include change in societal attitudes, staff development and organizational support to regular schools to meet the needs of special needs children, and developing policies for the disabled as an integral component of policies for society as a whole. Forcing all school to admit the disabled, as is sometimes suggested, would be unrealistic. Legislation, alone, is not the answer to this situation without broader societal changes.

“...the concept of ‘total inclusion’. It is most helpful for improving socialization and learning in many handicapped children, but as an over extension of the civil rights movement, it can disrupt appropriate education for both handicapped and non handicapped students, when special learning needs are ignored and behaviour problems increased.(Eric Schopler Collaboration between research professional and consumer - JADD- Vol 26 No2 1996).

Inclusion cannot wok for all. Some will always require separate services.
As a first step, every person who trains as a teacher will have to learn the basics of special ed; have some awareness of the needs of the disabled. Merely having children with leaning disabilities put into regular classrooms and expecting the teacher to magically know what to do with the child is to do more damage to the cause of inclusion than help the child.

But what of the schools that have managements that are progressive and are already open to inclusion and have teachers who have some acquaintance with special education.? The number of children with autism among their population of the learning disabled is extremely low. The social impairment and sensory disorders that characterize autism limit their chances  of inclusion given the distorted view of autism that is largely prevalent. One way of tackling this situation is for parents and teachers of these schools working together to provide peer supports to students with autism.This issue makes an effort to address these concerns.

Book Review

Climb Every Mountain:  Radhika's Story
by Indeera Chand

Indeera Chand was born in Lahore in 1937. After leaving university she taught at the Convent of Jesus and Mary School in Delhi, and after marrying and raising a family worked for Mobile Creates in Bombay. Later in Sydney, she completed a two year diploma in homeopathy. Since her return to India in 1990 she has been instrumental in setting up a monthly social evening for mentally challenged young adults. She lives in Delhi with her husband Ramesh and her daughter Radhika, whose story she recounts in Climb Every Mountain.

This is a biographical story of human interest about the challenge and rewards of bringing up a daughter, with Down’s syndrome. Ignorance has led to stigmas and taboos, which have put a lot of unnecessary pressure not only on families but equally on people with mental handicap. Radhika’s story is one of continued struggle, as well as of heart-warming support, and ultimately triumph. Radhika has challenged the values, expectations, and very way of life of those around her,  and her, and her creativity has surpassed that expected of even a ‘normal’ person.

Radhika works as an art teacher’s aide at a well known Delhi school, and is an artist of considerable talent. To quote Anjali Ela Menon “ I was struck by the sheer verve and sureness of touch in one as young as she. She has the characteristics of a true expressionist painter, and her work far from expressing any hint of her disability, bears out the astonishing but well-known fact that  sometimes an unusual and superior talent manifests itself. Radhika seems to fall into the category of ‘rarities’ ….”

At her birth, 24 years ago, there was no writing of this kind in India, and her family had to send for such stories from abroad. Even today, there are only very few books on real life experiences. Radhika’s presence has enriched her family, and her story will help to dispel some of the darkness surrounding mental handicap.
 

Announcement

Open Door is looking for Special Educators & Resource Teachers who will train and grow with the organisation.

Action for Autism (AFA) is dedicated to providing support and services to persons with Autism and their families, and working towards an environment where people with Autism can grow to their full potential.  Central to our work is a philosophy of love, acceptance, and happiness.

At Open Door, training is on the job and transdiciplinary in approach.  Along with special education, it involves behaviour modification, social development and language development.  Resource teachers also train in family counselling, conducting workshops, creating awareness, and are expected to grow and develop with and as part of the organisation, as autism specialists.

We are looking for persons who are open minded, willing to receive and give feedback with other teachers, and have a love and respect for children.  Enthusiastic, energetic graduates with a background of Child Development or Psychology preferred.  Training is for a period of nine months.  Write to Action for Autism, Post Box 3678, New Delhi, 110 024

Helpline

Q. This has reference to ‘Help Line’ column in the December ’96 (Vol III, No 3) issue of ‘Autism Network’ in which you have answered a question regarding Vitamin B6 and DMG therapy for autistic children. You have, in your answer, stated:

“….Over the last few years many families in India too have been obtaining the preparations from overseas and giving it to their autistic children. Some have been formulating it here on the basis of Dr Rimland’s suggestions.  Vitamin B6, also known as super Nuthera, and DMG are food supplements…”

I have an autistic grand child on whom we would like to try this therapy, but these preparations viz. DMG and Super Nutera have to be imported from the U.S. and are so exorbitantly priced that they are not within the reach of a middle class Indian.

I would like to know:

1.  Whether preparations equivalent to these made by Indian pharmaceutical manufacturers are available in India.
2.  If the exact combination/formula made in India is not available, can we make this combination by buying the individual drugs from the Indian market?
3.  Whether DMG is available in the Indian market?
4.  An Indian pharmaceutical manufacturer markets ‘Glutaneural’ tablets containing 0.5 m.g. of L(t)Glutamic Acid, U.S.S.R.P and 3 mg of Thiamine mononitrate I.P. in each. It has been found to be useful in certain conditions such as mental retardation, oligophrenia, involution psychosis, cerebral injuries, hemiplegia, grandmal and petimal epilipsies, mongolism, scholastic backwardness, intellectual fatigue etc.
5.  Dr Srinath could not advocate its usefulness in Autism, but she stated that it could be given as a trial to autistic children. Can you give your opinion regarding Glutaneurol to be given to autistic children?

A.

1.  To the best of our knowledge no preparations by Indian Pharmaceutical manufacturers equivalent to DMG and SuperNuthera are available in the Indian market.
2.  Dr Bernard Rimland has suggested specific individual drugs available in the Indian market from which Super Nuthera can be formulated. We however do not not have any suggestion from him regarding DMG.
3.  See 1.
4.  I completely agree with Dr Shobha Srinath. Unless and until exhaustive clinical trials have been conducted on a trial group with a specific drug - which to my knowledge has not been done with Glutaneural - it is not possible to comment on its usefulness or otherwise. Whether you want to try it out on your grandchild will have to be your personal decision.

As parents/grandparents we want to try out every therapy that might have even the minutest possibility of helping our child. However the only therapies that can definitely help our children are those based on the behavioural model.

Q.  Amit uses bad language. He also does some obsessive talking.

Q.  Kundan is twelve. In class he talks constantly disturbing everyone. He will ask the teacher the same question over and over again even when he knows the answer.

Q.  Romit troubles me a lot. He will say  ‘Say chup-chup, say chup-chup.’ He will repeat many many times. He will say ‘Say blue car. Say blue car.’ He does this all the time. If I do not repeat after him he gets very agitated.

A.  Many children with autism, particularly those with better language skills appear to go through phases of obsessive talking. Perhaps they derive some kind of security out of getting a safe answer to a safe question.?! I think it was Temple Grandin who recounted how she enjoyed asking a question repeatedly and waiting with excited anticipation the very predictable reply. She adds that it never occurred to her how exasperating the entire exercise could be to those around her. What I want to first get out of the way is that the child is not asking the questions repeatedly to get your goat!  He simply wants to do it.

So what can we do about it?

The best time to actively deal with this is when the child is talking outside class, at break time, in the playground, or at home. Keeping in mind that the child perhaps wants to hold a conversation and does not know how, and therefore does repetitive talking - one method we have found useful is to talk ‘about’ or ‘around’ a favoured repetition.

For example if the child says ‘Say Chup-Chup.’
Carer : ‘Shall I say it loudly or softly?’
Child : ‘ Loudly’
Carer: ‘How many times will I say ‘chup-chup’?
Child :  ‘Three times’
Carer : ‘Chup - Chup. Chup-Chup. Chup-Chup.’
There can be endless variations to this.
Carer : ‘Shall  I say ‘Chup-chup’ to the dog  or shall I say ‘Chup-Chup’ to the mirror?’

When talking around a child’s obsession we want to be creative. We do not want to repeat the same conversation since tha t defeats the purpose. One can talk around just  about any subject the child perserverates about. All it wants is a bit of creativity.

The other method that might work is to completely ignore the perserevation. Pay no attention. Make absolutely no comment on the child’s talk - no matter how persistent. However, if I ignore nine times and the tenth time I am exasperated and acknowledge, - that will only strengthen the child’s resolve to persist till he gets a reply!

So (as we keep repeating!) as in everything else CONSISTENCY is of paramount importance: consistency and comfort.  If I create a conversational situation out of his perservation, I too want to enjoy it as much as the child.  When I want to help my child deal with a behaviour and I am angry about it, it reduces the chance of success. I have to be comfortable about whichever method I choose to deal with the behaviour. The same consistency and sense of comfort must operate in dealing with ‘bad language’.

Do not react. Give the bad language no power. Let it pass as another everyday comment. However this reaction has to come from every person in the environment for it to be definitely effective.
 

Letters to the Editor

My daughter, Smt. Chitra Ramakrishnan, is having a boy, aged 3 years, who is a child with autism. I have found your “ Autism Network” contains valuable information for mothers of autistic children.

M.V. Venkataraman, I.R.S.
KilPauk, Madras.

I have been contacting you on telephone for consultations for my son, Mohan and have been receiving your journals “Autism Network.” I appreciate very much the work being done by you. I could not attend the recent workshop conducted, but in future I hope to participate in all the programmes.

Mrs Vijaya Rajagopalan
New Delhi.

I came across a story in the newspaper ‘ TELEGRAPH’, filed by their Delhi correspondent. The story is about Ms. Georgianne Thams, previously autistic, but gone into mainstream life at age eleven, courtesy Audiory Integration Training ( AIT) delivered by Dr. Berard of France. It also appears from the story that there have been some recent developments in this field of various sensory corrections, aiding autistic children.  In view of this recent case study of Ms Thomas, which you might be aware of, I was wondering whether one should explore these possibilities further and how.

A. Banerji
Calcutta

Ed. Note:
Though I have not seen the article you refer to, to my knowledge, there have been no ‘recent’ developments in the field of ‘sensory corrections’. Georgiana’s is not a recent case study, but rather the original instance that fuelled interest in AIT many years ago. The earlier packet of information on AIT sent to you still holds good. AIT is not universally efficacious, however like other therapies it can help some other people. The only intervention that helps all persons with autism is structured ‘individualised’ intervention and appropriate behaviour therapy. Working with the child is the only therapy that works with ALL.

I was delighted to meet you last week together with your colleagues; I was most impressed with the work you are doing especially in view of the fact that all your funds have to be raised from private sources; we know how difficult this is as you have no security such as we have here in England when we know that if a child is funded by his/her local authority they can be secure in the knowledge that their educational facilities are safe. I have a great regard and admiration for you all and I wish you every good wish for the future and hope that you may be able to expand your work to even more autistic people.

I hope that I will be able to visit again quite soon and maybe we can send a member of our educational staff to see what you are achieving. This will depend on funding arrangements and how much we have in our budget for this kind of activity.

With best wishes and thanks for your hospitality.

Yours sincerely,
Judy Lusty, Chairman
The National Autistic Society, London
 

Your magazine is so full of practical and sensible ideas and advice. It is the best magazine of the kind I have read.
Rita Mukherji
Calcutta 700019