Page One | New AFA Needs | Alternative therapies: The Use of Medication for People with Autism - II | Book Review |
What it takes to be the Parent of an Autistic Child | "Making Our Dream Reality" Autism Europe Congress 2000 | India and the Third Way | Autistic Longings | Update on Open Door | Helpline | Letters to the Editor | Announcements

N E T W O R K

August 2000 Vol. VII, No. 2

Page One

Having conquered another fabled Delhi summer we welcome the monsoon with the autumn issue of the Autism Network. We have been through exciting days and while the office functions through it all it is invigorating to get back to the activities at the school. By the time you have this issue in hand the preparations for the Annual Training Workshop will be well under way and most of the registrations will have already come in.

Our many families who are more comfortable in Hindi have welcomed the Hindi pages of the journal and we do hope we will be able to increase the pages with time - finances permitting.

The series, on alternative therapies that are used along with behavioural intervention, continues with the second part on the use of Medication. We feel increasingly concerned at the routine use of anti-epileptic drugs with two and three year olds to control their so-called hyperactivity. We are not certain where this practice originated or if this is accepted practice in the medical field. It is however a practice that causes disquiet.

There are many more additions to the Resource Library thanks to the support of the Danish Autism Society whose contribution to the progress of the autism movement in India is not inconsiderable.

In May the generous support of Air India enabled me to attend the Autisme-Europe Congress 2000 in Glasgow. The three busy days of the congress was preceded by a two-day workshop given by Rita Jordan and organised by the World Autism Organisation. For persons with autism - those who are indistinguishable from the'norm' as well as those who will never be part of the mainstream, whose 'differentness' will always be evident - as well as their families, Rita Jordan is a friend who one can trust to always be on their side. She is also the person who unknown to her, many years ago, acted as the catalyst that has brought Action for Autism where it is today. But that is another story!

For me the Congress was made particularly memorable by the participation of a number of Self Advocates, adults with autism with a real sense of identity. They presented at the plenary and concurrent sessions to packed audiences and shared their experiences as well as their knowledge.

A meeting of the World Autism Organisation followed the Congress where a number of new members were elected to the Council: from the Netherlands, Brazil, Mexico, Australia, USA among others. While both the Congress and the meeting of WAO were extremely informative and useful, the Congress once again highlighted the emerging culture of Autism as a distinct way of being. Something that is becoming increasingly evident and illustrated by the numerous websites set up, journals published, and books written, by persons with an Autistic Spectrum Disorder. A culture that wants understanding, help, support and above all acceptance. Not because individuals with autism are, but rather because of the way they are treated because of their autism. An assertive stance that wants 'Being Autistic' to be acknowledged with dignity.

New AFA Needs...

Research students, developmental psychologists, or anyone one else who is experienced in the field of study and documentation and can volunteer to work with us for a period of six months to a year.

Over the last year, we have watched four children move from being completely nonverbal to using meaningful speech. Some are saying single words and some are using entire four-to-six-word sentences. We feel that a documentation, based on an observation of the children both at the home and school environments, would help in further studies on methods used for teaching and enhancing communication that can help other families in the future.

If you are interested, do contact Merry Barua at:

Action for Autism, T 370 F Chiragh Gaon,
3rd Floor, New Delhi - 110017. Tel: 6416469/70

Also! We are looking for sponsors for:
1. Autism Network in 2001
2. Teachers for Open Door
3. Photocopying needs

 

ALTERNATIVE THERAPIES:
The Use of Medication for People with Autism - II
(Continued from the April 2000 issue of Autism Network)
Irina Dragulev

Opiate Blockers
Naltrexone/Trexan is a medication that blocks the brain's receptors for opiate drugs (such as Morphine). It may be useful in individuals who have biologically induced self-injurious behaviour. One theory about self-injurious behaviour hypothesizes that the injury causes the brain to produce its own opium-like chemicals (endorphins) and this opiate high is addictive. Therefore the individual repeats the injurious behaviour to continue feeling high. Another hypothesis is that individuals with autism have an inborn high level of endorphins and do not feel the pain of injuries, including self-inflicted ones. If an individual with autism is engaging in self-injurious behaviour for either of these reasons, giving Naltrexone/ Trexan may cause him to feel the pain of the injuries and block any high that he might feel. The behaviour will then diminish quickly. However, if the purpose of the self-injury is to communicate frustration, the wish to escape from tasks, or to obtain attention, then Naltrexone will not be effective.

There are also some studies which indicate that, in some individuals, Naltrexone may improve socialisation, attention span, as well as eye contact and decrease self-stimulatory behaviour and hyperactivity. However, there have been conflicting reports regarding the improvement of attention span. Side effects of Naltrexone include sedation, decrease of appetite, and vomiting.

Vitamins
Some parents hesitate to put a child on psychoactive drugs due to the long list of possible side effects. This is understandable. An alternative to psychoactive drugs has been nutritional manipulation. In autism, proponents of drug therapy have proposed the use of megavitamin therapy, especially vitamin B6, as a form of treatment. The benefits which are most often observed in autistic children given vitamin B6 are: increased use of sounds, words or speech; improved sleeping habits; decrease in hyperactivity and irritability; better attention span; increase in interest and learning. In some cases, self-injurious and/ or assaultive behaviours decreased. The use of vitamin B6 and magnesium may be helpful in some individuals with autism, particularly in very young children. However, there is no solid evidence supporting such a suggestion. Furthermore, it is relevant to keep in mind that the use of vitamin B6 for autism was not developed in India, where the standard diet of Indians is naturally rich in this vitamin. As always when dealing with autistic patients, determining the correct dosage is an individual matter, and must be done by careful trial and error. However, excessive doses of B vitamins can have negative side effects too.

General Comments
When considering treatment by medication, certain ethical issues should not be forgotten: Most individuals with autism will be unable to give informed consent to any form of medication. Some people would argue that this is totally unjustifiable; on the other hand, there exists the other extreme of a 'touching faith' that any medicine provided by a doctor must be beneficial. Parents of an autistic child will often be much more eligible than a physician to determine whether a certain symptom, such as aggression or self-injurious behaviour, could not be modified by other intervention (e.g. special education) or a change in the environment rather than medication. Medications are not a substitute for positive behavioural support for the person with autism.

Some form of side effects should always be anticipated. Unfortunately, there is no drug without possible side effects. Even your intake of 'crocin' can have side effects. The difference being that one does not take crocin everyday over an extended point of time: unlike the medication being discussed here. For many, if not all parents, the decision to try a 'psychoactive medication' can be very difficult at first. All medications have at least some serious risks, and parents worry about putting their child at any additional risk. Knowledge about the particular side effects may ease this worry on a rational level. It is therefore very important for parents to get as much information on medication as they can. As a parent, do not hesitate to ask your physician questions. You should know exactly what it is that your child is taking, and the more you are aware of possible side effects, the more you can watch out for those. In addition, you should ask what specific changes your physician expects to see as a result of the drug. If you do not know why a drug is being prescribed, you will not be able to assess whether it is effective or not. Remember, your doctor may be very experienced in prescribing medication, you will always be more skilled at noticing changes in your child's behaviour.

If a person with autism has been on medication for many years and the parents and physicians decide to change medication, the withdrawal must be done very slowly. Sudden withdrawal from medication can cause severe bad reactions. It can take several months to get a person off of a medication they have taken for many years. If a new medication is tried for just a few weeks and it is not effective or has bad side effects, it may be withdrawn quickly.

People with autism are very sensitive to medication. The effective doses for many medications in people with autism is often lower than in non-autistic people. This is especially true for all anti-depressant medications. The importance of starting at a very low dose and then raising the dose until the lowest effective dose is determined cannot be emphasised enough!

The main thing to remember when starting drug therapy in autistic children is that 'one man's meat is another man's poison. A medication that works with one autistic person can be worthless, or even harmful, for another. It is impossible to be dogmatic about which medication will or will not be effective for a given autistic individual. There is a great deal of hit-and miss, trial-and error at work in finding the right medication for a particular child.

The use of drugs in the autistic population should be viewed as only one component of a total treatment plan for individuals. If drugs work for your child, fine - but do not expect them to work in lieu of other special educational or behavioural treatments that need to be ongoing at the same time. Medications are not the only answer to behaviour problems. But used along with a positive educational programme and necessary environmental adaptations, they can sometimes help the individual with autism participate more fully.

Personal experiences by parents who have treated their children with medication: One parent reported that when her son was 9 years old, his doctor prescribed Halperidol treatment for her son in order to reduce his hyperactivity. At that time, the parent simply followed the doctor's instructions, not questioning the treatment. The parent was NOT aware of ANY side effects, as the doctor simply did not inform her. After six months of treatment with Halperidol, the family consulted a psychiatrist, Dr Rajiv Singh, who was the first to inform the parent of the possible side effects. The level of the boy's hyperactivity had not changed after six months in any significant manner. Having learnt of the possible side effects, the parent stopped the treatment. Though neither improvements nor side effects had been encountered, it needs to be said that side effects only occur after prolonged use.

Another parent was advised to treat her 3-year-old son with Ritalin for his 'hyperactivity'. Hyperactivity needs to be defined. "If my son doesn't sit down when I want him to, that could be defined as hyperactivity", but one should be careful with such narrow definitions. Which child at a young age will sit down when you tell him to? After one month of treatment, the parent felt that the treatment was helping her son and that the hyperactivity had decreased. It is usual for parents to 'see' such quick results. In our experience improvements are invariably observed as a 'psychological' effect when medication is started, following as it does on the feeling that "my son is taking medicine so he has to get better", coupled with a strong faith in medication as a cure. This is something parents as well as doctors want to be aware of. But finally what parents want to always keep in mind is that there is no substitute for informed decision.

Book Review
Ann Varavakula

Teaching Language to Children with Autism or other Developmental Disabilities, The Assessment of Basic Language and Learning Skills (The ABLLS) and Scoring Instructions and IEP Development Guide for the ABLLS

By Mark L Sundberg, Ph.D. & James W. Partington, Ph.D.

Like most parentsof children with autism, I am always on the look out for effective ways to teach my child the skills that he is not able to learn on his own. And like most parents of children who have a communication handicap my deepest yearning is to have my child conversational.

I have found that being a part of multiple lists on the Internet, is a good way of keeping tabs of current developments in the Autism world internationally. Over the past year, I have been reading many favorable reviews of a new set of books by Sundberg and Partington, and the effectiveness of their methods in developing more spontaneous conversation in children. Along with another parent, who offered to chip in, we acquired the complete set of their books this month.

The books I have to admit are not light reading. You will not find here anecdotes or case histories or light asides. Instead logically and meticulously, the authors lay out the basis of their methodology. I found that it wasn't so much that the ideas were radically new, but that the framework made it clear even to my novice eye just where my child was, and where he needed help. This focus on providing a truly useful assessment tool that leads naturally to a viable and effective plan of action for language intervention for the child (or adult) with a language handicap is what makes the book invaluable to parents, professionals and to those imparting training to parents in language development skills. I found almost immediately that the quality of my interaction with my child had made a quantum leap. I was no longer asking him questions in the old stale manner. Better still was the fact that it gave me ideas that I could implement in a natural way, in all surroundings - not just in a one-to-one tabletop setting.

The set of three books, often referred to as the ABLLS books, provide an alternate Approach to Language Assessment that is based on Skinner's analysis of Verbal Behaviour (1957) wherein he had analysed language on the same environmental principles of behaviour that he had previously used to analyse nonverbal behaviour. The current version of the book represents over twenty-five years of research developing a methodology for language assessment and intervention, applying Skinner's theories. By looking at language simply as a behaviour or a response to different forms of stimulus from the environment, they go on to developing an intervention strategy based on manipulating the environment using behavioural principles to maximize the individual's language response.

It is their contention that the traditional framework of expressive and receptive language is an incomplete account of language because it fails to take into account the different environment variables that evoke a language response. For example even if a child has the word 'scissor' mastered both receptively and expressively it does not necessarily mean that the child is able to ask for a pair of scissors when he needs one. Similarly if an eight year old is assessed as having expressive and receptive language equivalent to that of a typically developing two year old it does not provide a starting point for language intervention, because it does not take into account the substantial linguistic differences between the two which may include different rates of language acquisition, spontaneity, verbal interaction, novel responding and the prompt and reinforcement level required to evoke responses. Skinner's behavioural classification of language divides language into nine Verbal Relations depending on the form of stimulus and the corresponding response.

Receptive Language: This is defined as a nonverbal response to language of others, with a point-to-point correspondence between what is heard and the ensuing action - e.g. hearing someone say 'Touch the chair' and touching the chair. Many children with language delays have a substantial amount of receptive language.

Receptive by Feature, Function and Class (RFFC): The ability to identify objects, actions etc. when they are not specifically named, but rather described by some characterizing feature. e.g. the ability to touch a giraffe when someone says - 'What animal has a long neck?' or a toothbrush when asked 'What do you use to brush your teeth?' or a drum when asked 'Can you show me a musical instrument?'. Many children with language delays are unable to emit this more complicated receptive language and need an emphasis on training in this area to be able develop it.

The Echoic Repertoire: Here the stimulus is auditory and the response is speaking - to echo what one has heard. If a child has the ability to say 'bear' after a parent says 'bear' then it becomes possible to teach the child to say 'bear' in the presence of the bear by using what the authors refer to as a 'transfer of stimulus protocol' or in layman's terms changing the prompt stimulus required i.e. getting the child to say 'bear' without an echoic prompt. So the parent may say 'That's a bear - can you say bear?' (Echoic prompt). If the child responds and says 'bear' then the parent could say 'Right, now what is it?' Eventually the child will learn to say bear in answer to the question 'What is it?' and no longer needs the echoic prompt 'bear'. The Echoic repertoire is very important for teaching language to children with language delays, and if absent the authors strongly recommend that augmentative forms of communication like the Picture Exchange System or Sign Language be considered. By focusing on transferring the stimulus control the child can be taught to use language more 'spontaneously', and to teach more advanced forms of language and improve articulation.

The Imitation Repertoire: In contrast to the echoic repertoire that involves the vocal musculature and the stimulus is auditory, the imitation repertoire involves the fine and gross motor movements of the skeletal muscles and the stimulus and response are visual. For example the tendency to stand up, when some one else stands up, or to touch the tip of the index finger to the thumb, when someone else does so exemplify gross and fine motor imitation. For children with a poor echoic repertoire, but a strong imitative repertoire the authors recommend that more advanced forms of language be taught immediately using sign language, rather than focussing solely on first improving the echoic repertoire. This allows the child to immediately start communicating with others instead of using inappropriate behaviour as a response form.

The Mand Repertoire: The mand as defined by Skinner, is a type of verbal relation where the form of response is controlled by a motivational variable referred to as Establishing Operations (EOs), which could be something the child wants or the removal of an aversive situation. In layman's terms a mand is a type of verbal behaviour where the child asks for something he wants. The mand becomes a strong verbal behaviour because of its inbuilt reinforcement character. Asking for food items, help, instructions etc are all mands - so are forms of negative behaviour to get out of aversive situations displayed by children with limited verbal abilities. Mand training is the first type of language to teach to a nonverbal child. Regardless of how disabled the child is, he or she has needs that can be exploited to teach mands. For example when the child is hungry (the motivation for food is strong) then that is the time to work on teaching the child the word, sign or picture point/ exchange. To improve chances for success the reinforcer that the child is being taught to mand for should be carefully chosen, and training delivered only when the motivation for the specific reinforcer is strong. Secondly select words that are already familiar to the child demonstrated by an existing receptive, echoic or imitative skill. For example if the child moves to the door, when asked "Do you want to go outside?" Depending on the child's echoic and imitation skill level a decision of whether to teach the child vocal or sign language must be made. If both are weak, then a picture exchange system should be considered. Over time the number of mands in the child's repertoire must be gradually built up, while simultaneously building on the child's ability to ask for the reinforcement in its absence - i.e. for the child to ask for a food item, when it is not physically present in front of him.

The Tact Repertoire: The ability to label things in the environment, i.e. a verbal response to visual stimulus e.g. the ability to say chair in the presence of a chair is referred to as tact. The environment includes objects (nouns), actions (verbs), relations (prepositions), and properties of objects and actions (adjectives and adverbs). In contrast to standard language intervention programs, the authors recommend that the tact repertoire be built up only after the child has a reasonably strong 'mand' repertoire.

The Intraverbal Repertoire: This refers to the ability of the speaker to talk about objects and events even when they are not physically present. Technically the intraverbal is a type of verbal relation where the form of response is controlled by preceding verbal stimuli that lacks point to point correspondence. There may be many 'correct' intraverbal responses for the same stimulus. At a basic level the intraverbal as I understand it is the expressive counterpoint of RFCC. For example the ability to say (or sign) 'dog' when asked to name an animal.

The Textual Repertoire: The ability to 'read' text - e.g seeing the word 'apple' written and being able to say (or sign or point to ) 'Apple'. The authors suggest using transfer of stimulus methods to teach reading skills and make a distinction between merely reading and reading comprehension, which involves receptive, mand, tact and intraverbal repertoires.

The Transcriptive (Spelling) Repertoire: The ability to spell 'pencil' when asked to do so. While the stimulus and response are in the same sense mode they do not resemble each other making this form of verbal behaviour harder to acquire.

The authors contend that the importance of mand - RFCC - and intraverbal training is frequently underestimated in the language training programs currently available for children with autism and other developmental abilities, which instead emphasize on extensive receptive and expressive training that translates into the development of only the tact repertoire. When as a consequence a typical verbal repertoire does not develop, the blame is placed on the child's handicapping condition, or the inadequacies of sign language or the failure of behaviour techniques modification instead of the failure to teach mands and intraverbals. Another problem highlighted by the authors is that the child acquires hundreds of words/ signs but rarely uses them to talk/ sign 'spontaneously'. They suggest that a careful analysis of the verbal behaviour may show that the child is under the strong influence of the nonverbal stimulus and the verbal prompt 'What is that?' The problem then lies in that the response has not been effectively transferred to other types of 'Establishing Operations' and to verbal stimuli that lack 'point to point' correspondence with the object.

The authors emphasize that the training procedures be conducted throughout the day in every environment - which would increase the speed of acquisition. Language must be reinforced by the entire verbal community in the child's life, taking full advantage of the child's changing motivations and watching out for satiation (i.e. when they are no longer hungry or interested in a certain toy.) If a child leaves a training session and goes into an environment where signs or language is no longer used or required as a prerequisite for him to get what he wants, then acquisition will be slow, and the child may revert to negative behaviours to get what he wants.

The authors remind the readers that a typical three-year-old emits upto 20,000 words a day! In order to approximate the language learning patterns of typical children there must therefore be frequent training trials that are the primary focus of the treatment plan, and must involve everyone in the child's environment. In addition to natural events that should be exploited for mand and tact training, opportunities need to be contrived, by frequently presenting stimuli which evoke verbal behaviour and reinforcing that behaviour immediately. At the same time, care must be taken to ensure that language acquisition remains fun and functional for the child.

The books provide two separate assessments. The first is basic and helps you identify the broad areas in which language intervention is most needed. The second presented in the 'The Assessment of Basic Language and Learning Skills' (The ABLLS) is extremely detailed and practically outlines the actual language trials that need to be conducted. There are detailed instructions on how to assign scores in each section, and how to develop a plan of action based on these scores. The ABLLS besides helping you plan out a practical and effective IEP is invaluable also as a tool to keep track of your child's progress. It is recommended by the authors to conduct the ABLLS evaluation once a year, or more frequently if the child has made rapid steps forward. By comparing scores, a clear idea of the child's progress can be had.

For each of the major verbal behaviours - i.e. echoic, tacting, manding, intraverbal and RFCC the authors have provided two separate chapters, one detailing how to develop the specific verbal behaviour at a primary level and the other at an advanced level. The methods outlined are useful for adults with a language handicap as well. These chapters are a little technical, and would be easier to understand for someone already well versed with behavioural methodology. The authors have given references to several books on behaviour methodology.

The authors also make a strong case for augmentative forms of communication for non-verbal children, and strongly recommend that sign language be tried for children with some imitation abilities. They advocate sign over a picture exchange system where possible, because of the portability of sign language and its resemblance in structure to natural language.

Thereis a whole chapter devoted to comparing DTT (Discrete Trial Training) better known as ABA, and NET (Natural Environment Training). The pros and cons of each are extensively analysed, and the authors recommend a judicious mix of the two, depending on the skill being taught and the child's learning pattern.

There is also a chapter devoted to analysing effective Educational Programs which would be of interest to parents evaluating educational choices for their child, and for professionals interested in setting up services for children.

For more information readers can visit the authors' website: http:// www.corteks.com/STARS

This book is available at our resource centre.

What it Takes to be the Parent of an Autistic Child
(Please feel free to add...)

1. Scientific researcher
2. Education advocate and Educator
3. Insurance specialist
4. Herbalist and Dietician
5. Doctor
6. Lawyer
7. Witch Doctor
8. Physicians assistant
9. Expert negotiator and Arbitrator (IEP) nuff said
10. Fund raiser
11. Political lobbyist/activist
12. Speech and letter writer
13. Lectures 'R' us
14. Internet explorer
15. Book reviewer
16. Biochemist
17. Play date party organiser/ Caterer and Referee
18. Web site designer
19. Assistive technology and software reviewer,
Beta tester and Inventor
20. Never ending explorer of ways to say: "GOOD JOB!"
21. Crisis intervention specialist (Talking your spouse or other parents 'off' the tower)
22. Stamina of a marathon runner. And world class speed.
23. The defensive prowess of Bruce Lee. Wax on Wax off.
24. Clown (Big feet Big nose red hair the whole nine yards.)
25. Santa impersonator
25. Disney movie cataloger/ VCR Mechanic ("Grilled cheese in the VCR" etc...)
26. High angle rescue specialist ("How in the heck did she get on the roof!")
27. Get me my patch kit honey there's another hole in the wall.
28. A good chin. You know - like Rocky.
29. You should not be able to tell or care if you are having a good or bad hair day.
30. Advertiser/ Campaigner (Therapist wanted flexible hours etc..)
31. Sleep deprivation threshold of a Navy Seal.
32. Low sensitivity to screaming and or loud banging noises.
33. "Man do I love to do laundry."

 

"Making Our Dream Reality"
Autism-Europe Congress 2000

Late in May the Scottish Society for Autism hosted the Sixth Autism-Europe Congress in Glasgow. The congress, 'Making Our Dream Reality', had some terrific speakers on various topics right from diagnosis, biology, education, psychology, service models, ethical and legal issues, and advocacy. Issues related to education covered early intervention and ranged from home-based early intervention as well as school-based Applied Behaviour Analysis models, to including children with autism in general education classrooms, and modes of supporting children in mainstream schools. Besides these of course there were many parent accounts as well as personal accounts from individuals on the spectrum.

There was Carol Gray on teaching social understanding, Christopher Gillberg on biological issues, Andy Bondy on the Picture Exchange Communication System, Patricia Howlin on employment for high functioning individuals, Tony Attwood on Aspergers Syndrome, the irrepressible Paul Shattock on diets, William Shaw on yeast. Judith Gould spoke on the DISCO - the Diagnostic Interview for Social and Communication Disorders - that she has developed with Lorna Wing. There were the sessions on topics like educating the police on how to deal with persons with autism, the difficulties in obtaining a driver's license, and of course several presentations on advocacy related issues. I talked on empowering parents of children with autism and briefly outlined methods that could be followed in doing so. Tamara Daley, the Fulbright scholar who many families in India are familiar with and who is still associated with the activities of AFA, presented a paper on professional concepts of autism in India.

There were stories of hope and despair, stories of struggle and determination from parents everywhere. Including one from a mother who herself has Aspergers Syndrome and three of whose four children are on the spectrum; and who because of her 'inside out understanding' of autism is able to deal with her children in a manner that we who are neurotypical cannot!

Theo Peeters reminded us of the lessons to be learnt from persons with autism who with their difficulty with double meaning, pretence, cheating, and so on are so much more 'authentic' than those 'suffering from normalcy'! Gunilla Gerland, a psychologist who is herself on the spectrum, focussed on the importance of discussing a diagnosis of autism with the child concerned, and on giving information about Autism to young people diagnosed with Aspergers Syndrome.

For me the Congress was made particularly memorable by the participation of a number of Self Advocates, adults with autism with a real sense of identity. They presented at the plenary and concurrent sessions to packed audiences, shared their experiences as well as their knowledge.

Right from the opening of the Congress where adults on the spectrum Richard Exley, Gunilla Gerland, Wendy Lawson, Ros Blackburn gave personal accounts, the tone of the Congress was set by the numbers of adults with autism attending. There was John Joyce editor of Aspergers United who has been in touch with AFA for many years. And of course Gilles Trehin with his gentle smile and his incredible imagination! This gifted twenty-eight year old Frenchman has been drawing since age five and has conceived a most fascinating imaginary city called Urville, of which he has actually written a historical, geographic, cultural and economic description!!! Gunilla Gerland a practicing psychologist and advocate for autism spoke of her work with young people on the spectrum and felt strongly that they are informed of their autism at an early age. She has also published a small illustrated book that parents and teachers can use when discussing with their children their autism and which has now been added to the AFA library. Her talk reinforced our belief - that is it is important to tell people with autism about their condition - though in practice we usually do so only with older individuals. Richard Exley and Ros Blackburn made a point of their understanding and usage of humour, something all people with autism are supposed to lack. Personally I found it particularly fascinating listening to Ros Blackburn. She made it clear that though she lived independently - a cherished arrangement as it allowed her to indulge her obsessions! - she absolutely needed support. More because, as she shared with typical autistic frankness, she has behaviours that so-called 'normal' society would consider gross. And how she has learnt to balance her need to indulge those behaviours with the expectations of society.

I recall reading somewhere that more books and articles are written on autism in the west than there are children with autism! And this is perhaps as much because this is such an enigmatic, fascinating disorder as that it is also a condition on which the last word is far from having been said. This was illustrated in the sessions at the congress. Till now one believed that the Theory of Mind was perhaps the core deficit in autism. However, at the sessions, Central Coherence Theory was discussed as much as Theory of Mind. Central Coherence Theory is the focus on details that is a strength in autism. This difficulty in seeing the whole is what Hilda de Clerq calls 'overselective thinking'.

One of the insistent messages the Glasgow Congress gave out was the importance of early, appropriate, and effective, training for children with autism, a message that somehow seems to be lost on us here in India. Despite the knowledge that early skills training helps many children with autism to be mainstreamed, AFA has yet to see any action on the part of the Rehabilation Council of India to increase the number of trained personnel who can provide this training.

India and the Third Way
Kathy Grant

Kathy Grant is an adult with autism. She lives in the USA.

In the 1970s and 1980s, India was one of the leaders of the nonaligned movement. India sided neither with the USSR totally nor with the USA totally. India along with other Third World nations believed that during the Cold War, to serve their nations' best interests, it was best not to be aligned with either side.

How does this relate to autism? It relates to autism in that India can be a leader of Third World nations when it comes to autism because of the cultural differences between First World nations and the rest of the world. Cultural differences do account for how disabilities, especially autism is viewed. Most of the autism information that is available now usually comes from countries like the US, Australia, and England. While these countries have good information and it would be remiss not to get a hold of this, it is important to realize that countries like the US are:
1. Economically prosperous.
2. Their customs and ideas are based on the Judeo-Christian religion and ethics, and
3. Countries like the US have the scientific equipment to do some research that poorer nations cannot afford to do.

India can be important in that as a country that is struggling with intense poverty in certain areas, it can give other Third World nations 'low-tech' ideas on how to help parents and people with autism deal with this disability with the resources that are already available.
Secondly, it is important that India be a leader in educating, helping, and getting laws passed in helping people with autism and other disabilities. If India can do this, then other Third World nations will follow. Thirdly, it is important that as a country whose traditions historically are not based on Judeo-Christian religion and ethics, that viewpoints from Hindus, Sikhs, and Muslims are to be sought out, studied, and written about. How people view disability, especially autism, originates in the philosophical-religious viewpoint of that culture. It is important that other religious viewpoints are discussed and written about.

Also, many Third World nations are facing immense problems like civil wars and famine, and many times dealing with disabilities like autism are not a priority because of other things having to be dealt with.

India can lead the way in that people with autism and their families exist and need help, despite this fact. It is important that people like this are not forgotten.

Also, the majority of people with autism reside in countries that are not economically prosperous. It is important that there is a country that is not associated with the First World that can be an example for other nations. And that country is India.

Autistic Longings
Rajeshkumar K.

Rajeshkumar K is a research scholar at the Department of Humanities and Social Sciences, Indian Institute of Technology, Delhi. He is doing a study at Open Door on Communication and Social Cognition in Autistic Children.

Year: 2030
Place: Autism Centre, Stanford University

Dr Rajeshkumar Karunakaran couldn't believe himself when he entered the Seminar Hall. Among the speakers who were sitting in the front row he could see three familiar faces. He read out the name boards - Dr Sutirtho Chakravarty, Dr Neeraj Barua and Dr Amitava Basu.
Rajesh introduced his friends to his wife:
"They were my classmates at Open Door School in Delhi, thirty years ago."

Suthirtho initiated the conversation:
Rajesh, Can I laugh now?
Neeraj : Rajesh to sit on my 'godi'.

The same old utterances which got recorded and made unwritable in the heart perhaps decades ago. Never in his life had he had such a wonderful experience like what he had at Open Door School.

Year : 2000
Place : Open Door School, Delhi.

Four students in the class: Amitava, Neeraj, Rajesh and Sutirtho.
Sutirtho : Can I laugh now? If you want, you can.
Amitava : Sutirtho, Can you sit quietly?
(Sutirtho puts the cap of a sketch pen into his mouth)
Amitava : Don't put the sketch pen cap in your mouth.
Sutirtho : Why?
Amitava : No
Sutirtho : What will happen?
Amitava : It is a dirty thing. (Sutirtho laughs)
Amitava : Don't laugh.

While Neeraj and Rajesh closely observe this interaction, the latter starts writing notes - Amitava seems to be a moralist who is very much concerned about etiquette. At the same time he might be having a highly Parent contaminated Adult Egostate. Sutirtho seems to be a scientist. He wants to know the "why" and "what will happen" of everything. He might be in Eric Erikson's Robinson Crusoe stage of development. Neeraj is very calm and quiet sitting and observing the things around with serenity.)

Sutirtho : Amitava, why didn't you come yesterday?
Amitava : I had a haircut.
Sutirtho (very politely) : Can I laugh now?
Amitava : Please don't make fun.
Sutirtho : Why?
Amitava : No. It is study-time and you have to obey rules.
Sutirtho : The Complete Man Since 1925.
If I don't obey the rules, am I a good boy?
Amitava : No
Sutirtho: Then what boy?

Rajesh writes: Hey! I have got it...Laurence Kohlberg. These two guys might be in Kohlberg's stages of moral development. They will fit into the "good boy-nice girl orientation" in moral development.

Teacher : What does a globe have?
Sutirtho: AXIS...
Teacher : If you uproot a tree, what will happen?
Sutirtho : It will disturb the balance of nature. World will become desert. I don't like desert...It is my choice.

Rajesh: Are these answers wrong? No. Are they right? Maybe. Then what are the correct answers for these questions? God knows!! He appears to be very good in logical thinking. He may be in Piaget's Formal operational stage of cognitive development.

Teacher : History is the study of the past (trying to take her friends back to the topic)
Sutirtho : Then what is the study of future called?
Rajesh : Study of future ?...
Futuro...logy?..
Yes...
No...

Suddenly Rajesh heard somebody uttering very loudly "Who Is Autistic?" It is the title of Dr. Sutirtho's paper. He is presenting it now. Rajesh checked around him. Yes, It is indeed just the Seminar Hall. His wife is there next to him and at the other side, Dr Amitava and Dr Neeraj, Dr Sutirtho stood like a very confident Columbian goal keeper, Rene Higwita facing penalty shoot out.

Post-Script
"Bring a banyan-fruit from there"
"Here it is, my lord"
"Break it"
"It is broken my lord"
"What do you see there?"
"These rather fine seeds, my lord"
"Well, break one of them"
"It is broken, my lord"
"What do you see there?"
"Nothing, my lord."
He said to him, "My boy, this finest essence which you
do not perceive, verily my boy, from that finest
essence the large banyan thus arises. Believe me my boy.

That finest essence which the whole world has for itself, that is the Truth, that is the Self, that you are, O Svetaketu".

Update on Open Door
Sandra Dawson

The last few months have seen many changes as Open Door continues on in its mission. Though May brought with it extreme heat it also brought the excitement and anticipation of the Annual Day function. Towards the middle of April, the children began feverish preparation and continued on till the Big Day: the 13th of May. For the first time the Programme was held outside the AFA 'campus', at the Meeting Hall in the Chirag Dilli Mandir. The place was packed with friends, relatives and well wishers as the children were cheered on in their performances in song, skit and play. Despite the power failure, heavy rain and heat, candles being the sole source of light, the children carried on performing amazingly well. This shows a tremendous progress in the ability of each child to cope with unexpected changes and stay happy even when things are uncomfortable.

That was the end of the summer and everyone went on holiday while the office took a break as well, to refresh the mind and body. June saw many new families come in for Diagnosis, Counselling and Home Programmes. In July, the teachers came back with a blast of new ideas that we could incorporate in the present programmes. Stemming from that Open Door now has an intermediate section for those children who have gone through the basic steps of learning and are now ready for more independent work structured in a classroom style. We have high hopes that this will work well.

We had the pleasure of having one little boy join us on the Day-School programme for three months from February to May and now another family had come to Delhi for the same length of time. Many families are finding this very useful because they cannot shift to Delhi and this is convenient for them. Some families have decided to discontinue the Hourly Intervention, as the mothers feel confident to work with their children on their own. This for us is one of the biggest rewards we can receive that a family can teach their own child.

In the summer break we brainstormed on the possibility of starting a Mother & Child Day Programme for those children who are not attending any school. The programme will be underway in August. We look forward to a lot of fun, excitement and hard work in the months to come, too.

Helpline

Q. My daughter often sleeps very late or wakes up in the middle of the night and cries. During the day, she goes or is taken to the toilet and she does it there, but wets her bed most nights. Can you suggest a solution?

A. Very often children with Autism, have irregular, odd and disturbed sleep patterns. They may sleep less than usual, get easily disturbed, or may sleep at odd hours. We want to always remember that as parents our own health and energy is important and necessary as we are the ones who have to look after the child. So, even if A does not sleep enough at night and remains awake arrange things in such a way that she is safe on her own and you can sleep. The easiest thing is to structure the bedroom. This means that you remove things that A might want to explore but need supervision to do so: put away breakables, fill in electrical points, bolt the room from the inside so she cannot go out, and lock/ bolt any attached rooms that are there. Just make the room child friendly, as you would do for any other young child. If she tries to get attention by crying, screaming, pulling hair or pulling you - just ignore it. Often when a child cries at night she gets attention, and learns from this experience the she can cry and get attention whenever she wants and that there is also an exciting hu-ha every time she wakes up at night. Ignoring a child during this time, (even a regular child) works well, if it is done consistently and persistently. Initially it may be a little difficult as when you start ignoring A may do more things to wake you, but continue to ignore comfortably.

Another reason for lack of sleep could be her sensitivity to sounds. A child may be distracted by or bothered by certain sounds that are of no consequence to us. That's something you want to consider as well.

Many times when a child wets the bed, and we do not know how to cope with it, it is very natural to get stressed out by that. We may react and discuss it during the day, as a big deal and often this discussion is in the presence of he child. We want to remember that this child is enjoying the attention from all the discussion and will do it even more to get that attention. Frequent wetting is often an issue of control. We can force the child to do everything else and control him completely in almost all areas except for his toileting. He is the only one who can decide when and where to relieve himself. Hence, we would suggest that you follow a toilet schedule, praise and ignore appropriately as we have suggested in our toilet training information and stay relaxed about the accidents. Rest assured that it would reduce and go away in time. The better you can ignore the faster the unwanted bed-wetting will reduce.

Q. How do I improve G's eye-contact and response to his name?

A. To build on his eye-contact one of the things that you can do while working with him is to sit opposite him preferably at a lower level so he can look at you easily. Make yourself exciting and keep your expression animated and do things that are exciting for him, like blowing bubbles, tickling, playing with shiny wrappers. Remember to maintain the three Es - Energy, Excitement, and Enthusiasm, while working with him. Each time G looks at you praise him big and specific, "Shabash, look diya" or "Good Looking, G." When giving him an instruction if G is not looking at you get into his line of vision and then talk to him. Avoid turning his face physically to look at you…that can be perceived as force by him. If G is playing with a favoured toy or object pick up a similar one and do whatever he is doing. The chances of that catching his eye are pretty high. Always praise for a look even if it is for a brief second.

When you call his name, pause briefly for him to respond. It takes him a while to hear, process the information and then find the correct response. At times, G will respond quicker and at other times slower. This may happen because his focus is on something else. Vary your tone, request rather than command, whisper or sing, use squeaky and deep voices to get his attention.

Q. Of late S does not like to do anything and keeps pacing and throwing things. He is especially moody in the evenings. Can you suggest anything for him?

A. S's phase of not wanting to do anything - you want to stay relaxed about that. Do not judge yourself as doing things inappropriately. These phases will keep coming and going. Be happy and avoid giving him the feeling that you are stressed about it. If he senses stress in your behaviour, he may use this kind of non-compliance for getting attention. What you want to do is to just relax, and think how you can do things differently. For example change teaching numbers into a physical activity. You could say - 'Let's jump two times in this circle'( a circle drawn on the floor). Since he likes to pace, join him in it and while doing it sing for him, Get your other son to join and let S feel that its okay with you. In fact in the evening give him control by telling him yourself 'Its time to walk' or pace.

Q. One thing we have read on the internet is that if one child had autism then it affects the other normal child also, We are really worried.

A. Please do not worry about your other son being affected by autism. He is already nine years old. If he were to be autistic I think he would have been so by now. I don't think nine-year-olds 'turn' autistic. The onset of autism is by 30 months latest, remember? And it is not contagious! So don't worry about that.

Q. Our 3 year old child is found to be autistic. A detailed assessment will be ready shortly. Doctors have said it is high functioning autism. Our problem is the child gets done from us everything she wants by means of holding our hand and taking it to the object. She does make eye contact.

She has no speech, except that she can utter many unspecific words. We make a request to advise us what treatment/therapy could be adopted and how we could go about it.

A. It is good that a detailed assessment is being done as that will help you in deciding on the programme to follow with your daughter.

The behaviours you refer to are fairly typical. By now you must have read up a fair amount of information on autism; the better you understand the disorder the more you will be able to help your daughter. As you are aware your daughter's impairment is in understanding communication as well as in conveying her needs and feelings. As a result though she has 'speech' she uses it in 'unspecific' ways. You can do a few things to help her improve her communication. These would be the following:
When your daughter looks at something or otherwise appears to be interested in something, label that object. So if she is playing with a piece of string point to it and say 'string'. Similarly if she is looking at a car on the road the say 'car'. Verbally label whatever she is looking at. When she wants something like say water and leads you to it by hand then before you hand her the glass of water say - 'water' and then give her the glass. Remember to keep all your communication simple and clear. Avoid using too many words. If you want her to remove her shoes before coming into the house you want to just say 'remove shoes' versus saying 'Take off you shoes before coming in. They are dirty' or any such complicated instructions.

It's great that she already has good eye contact. What you want to check out is if it is on the same level as other kids, or if it is less. If the latter than you want to work on that too.

Q. Of late, S doesn't like to do anything and keeps pacing and throwing things (especially moody in the evenings). Can you suggest anything for him?

A. You want to be relaxed about Sunny's phase of not wanting to do anything. Do not judge yourself as doing things inappropriately. These phases will keep coming and going. Be happy and avoid giving him the feeling that you are stressed about it. If he senses stress in your manner, he may use this kind of non-compliance for getting attention. What you want to do is to just relax, and think how you can do just do things differently. For example change teaching numbers into a physical activity. You could say "lets jump two times in this circle" (a circle you have drawn on the floor). Since he likes to pace join him in it and while doing it sing for him, get Bunny to join in and let Sunny feel that it's OK. with you. In fact, in the evenings give him control by saying yourself, "Its time to walk or pace". He will soon get out of this phase.

Letters to the Editor

Recently the Hindustan Times, a leading Indian newspaper carried a front page story on a child called Sajjo who has spent all of her 12 years in chains because she is mentally 'ill'. Her story, like a number of others about the individuals with disabilities that have appeared in the media in the past few months, is part of an endless list of problems this country is yet to solve even after so many years of independence.

I do however wonder at the intentions of the media behind projecting such stories. Does the media just want a story sensational enough to make the front page, that people will read, feel sorry about, and forget in a few days? Or is the purpose to make people and the state aware of the problems behind our Sajjos and prompt them to do something about it? If the former, the media certainly succeeds spectacularly!

But I believe the media can do a great deal more by helping the Sajjos and their families rather than merely make people read one sensational story and moving on to a new one the next day. They can play a positive and constructive role by sensitizing the community and making the government aware of its responsibilities towards society.

Often we come across news items such as 'Three possessed children beaten to death', 'Mentally retarded kept in fetters, 'Girl kept locked for 20 years', 'Twelve year old boy rescued from captivity'. But how many of us get to know the true story behind such news? The so-called possessed children reported on a few months ago may actually have been suffering from mental retardation or autism. If this awareness was there in the parents or their community this fate would not have befallen them and no soccerer would have been called in who would have recommended something as inhuman as beating the spirits out of the children.

I am sure Sajjo too might not have had to spend her life locked up if her parents knew she was mentally challenged. Instead she might have improved remarkably at a good school. I am equally sure this may not have been possible because such facilities exist only in a limited number in India and secondly because access to information about such facilities would have been absent in the kind of society Sajjo's family come from.

The chaining of Sajjo was without doubt inhuman. But really, what help was available to Sajjo's parents? Particularly when the same society that is now so quick to condemn her parents is the same one that called her paagal and stoned her when her parents left her free. So who do the Sajjos of this world and their parents turn to for help. The answer is not easy; but both society and the government have to come together to find the answers. Society can definitely play its role by at least understanding the Sajjos and showing a level of acceptance.

And it is here that the media can play a role. By not merely reporting such stories but also conveying clear messages and raising awareness in society.

ASHWANI CHASWAL
New Delhi

 

When you come to the edge of all the light you know and are about to step off intothe darkness of the unknown, faith is knowing one of two things will happen; there will be something solid to stand on or you will be taught to fly.

Announcement

To all families whose children are on the programmes at Action for Autism

As the number of children increase,we are finding that two or three children share the same name.

For the sake of accurate record keeping we request you to please send us current passport size photographs of your child/children, with their official name, date of birth and date when the picture was taken.

Please print in CAPITALS