When even jokes aren't a laughing matter

1st March 1996 at 00:00
Asperger syndrome is a little-known form of autism that brings great distress to sufferers and their families. An early diagnosis and sympathetic teaching are essential. My son whirled me round the room after the psychiatrist had left. "Isn't it wonderful," he said "I've got irreversible congenital brain damage!" I must admit, I was delighted, too. Ever since Tim started school 16 years ago, teachers, friends and family have been asking "Whatever is the matter with that child?" in varying tones of sympathy, irritation, anger and despair. At last we have, if not a cure, a diagnosis: Asperger syndrome.

IT was probably damaged at birth. He was induced when he was a week A lack of oxygen before birth may well have caused the slight but significant damage which triggers Asperger's. Tim's psychiatrist agrees this is the most likely explanation.

Asperger sufferers have particular difficulties relating to other people. They cannot understand how relationships work, although they are often desperately anxious to make friends. They are subject to irrational fears and anxieties, and their timidity coupled with social ineptitude make them natural victims for bullies.

In Tim's case, his slow, uninflected speech, his clumsiness and awkward movements meant that other children, and sometimes adults, assumed he was stupid. A string of high grade GCSEs and A-levels (two As and a B in A-level English, maths and German) disproved this, but added to his sense of frustration and despair. Why could no-one else see the intelligent, witty, affectionate person he knew himself to be? Within the family, he is accepted and valued, but for a young man it is not enough to know that your mother loves you.

Severe depression in adolescence and early adulthood is common in Asperger syndrome. Tim has been in and out of treatment for depression for the last five years, as he has struggled to leave home, study and travel. On leaving school he had a place at Cambridge to study Anglo Saxon, Norse and Celtic but two attempts at starting the course have ended in breakdown.

Normal student counselling services have neither the time nor the expertise to support someone suffering the extreme anxiety and disorientation that Tim suffered away from home. Communal life with other, "normal" young people was a nightmare for him. He became physically and mentally debilitated and ill. His college authorities were sympathetic but frightened. Like everyone else, they were aware of a deep-rooted problem they could not identify or cope with. After his second breakdown at Cambridge, Tim was told firmly that he could come back when he was "cured".

It is some comfort to me that a series of professionals have been as baffled by Tim as I have been. We have persisted with the idea that he was a late developer, sensitive, unlucky. We were convinced that such an intelligent child was bound eventually to learn by his mistakes, adapt his behaviour and learn life and social skills. But Asperger sufferers do not acquire these by osmosis like other people. They have to have the subtle nuances of emotional and social interactions explained to them. They must consciously learn interpersonal skills. For them it is like living in a foreign country where no-one speaks your language and you have only a sketchy idea of theirs: an isolating and debilitating way of life.

In April 1995 two significant things happened. Tim returned home from yet another disastrous excursion into the outside world, ready to face the fact that there really was something intrinsically wrong with him. Then we watched the programme on Asperger's Syndrome entitled "I'm Not Stupid" in the BBC States of Mind Series.

I was only partly convinced at first that this was the diagnosis we were looking for. Many of the characteristics and behaviour patterns described were painfully familiar, but Tim did not suffer from obsessions and compulsions like the people in the programme, did he?

To his enormous relief, Tim admitted that he did, and always had. He describes being dominated, and terrified, for as long as he can remember by small rituals and compulsions, often relating to numbers and counting. As he grew up he became aware that these were not "normal" and was afraid of the compulsions becoming dangerous and violent, or that they were precursors of schizophrenia. All of which, of course intensified his depression and sense of isolation.

Subsequent reading and consultations with doctors and psychiatrists have confirmed our diagnosis; Tim is a classic case of Asperger syndrome. After the initial euphoria, his next reaction was "Whom can I sue?". Why had no-one recognised the problem for what is was years ago?

Part of the answer of course is that he was deliberately withholding information about many of his symptoms in case he was really going mad. The other reason is his high intelligence. Many high functioning Asperger sufferers are not diagnosed until their mid-to-late teens because they do not present any problem to the education system. They can do well at school academically, particularly in maths, and they are not necessarily anti-social or disruptive. They are sad; and children are not given Statements of Special Needs for being sad. Perhaps they should be.

Tim now hopes to get back into higher education, this time living at home, with full disclosure of his problems and help and support to combat them. Our local university, Leicester, which has just confirmed the offer of a place to do maths in October, has an excellent welfare service supporting students with special needs.

Psychologists may be unwilling to "label" children; but for Tim it is very helpful to be able to see himself as a "normal" Asperger syndrome sufferer rather than a one-off freak. He now knows that his difficulties have not been his fault, or his parents'. Now he understands his limitations and difficulties, he can apply his intelligence to developing strategies for coping with them.

What would be even more encouraging would be to contact someone else who was a stage further on already at university or beyond who could alert him to the problems ahead and ways of combating them. We would also like to hear from any other Asperger's sufferers who, like Tim, thinks they are on their own.

Lindy and Tim Hardcastle can be contacted care of The TES, Admiral House, 66-68 East Smithfield, London E1 9XY

** Asperger syndrome might succinctly be defined as autism in conjunction with normal or high intelligence. It was first described in the 194O's, and has long been used on the Continent as a diagnostic label, but only in recent years has it attracted much attention in the UK where the average age of diagnosis is 16.

As the word "syndrome" suggests, Asperger's is a collection of symptoms, not all of which occur in every affected individual; and only a few of which are used by psycho-logists as diagnostic criteria. The following list may help.

Physical characteristics can include: * Clumsiness * A face rather too young for his or her age * A strained, croaky, slow or monotonous voice * A stammer or lisp * A stilted gait * Arms held rigid by his or her sides when walking * Poor or absent eye-contact Differences in educational development: * Dyslexia: unusual difficulty in learning to read; * Hyperlexia: unusually high reading ability and drive to read * Preference for fact over fiction in reading matter * Difficulty telling left from right * Good mathematical ability * Unusually large vocabulary (often inappropriately used) * Lack of motivation in schoolwork * One or more private subjects of study (often trivial or bizarre) on which the child holds forth. Examples include different makes of vacuum cleaner, the designs of sweet wrappers, the life-cycle of frogs.

Psychological or psychosocial symptoms: * Social isolation * Lack of imaginative play * Lack of expression - in voice, face and body language * Difficulty interpreting expression of others * Shyness, anxiety and unhappiness.

Behavioural abnormalities: * Attachment to routine.

* Oversensitivity to noise * Dislike of physical contact.

* Apparent deafness I know from my own experience that an Asperger child, while perhaps seeming merely difficult or intractable, will in fact be in considerable distress and in need of diagnosis and appropriate help. No Asperger person can be considered to understand and control his life without some understanding of his condition; nor enjoy life without the understanding of others.

This is an edited version of the advice Tim Hardcastle has sent to people who taught him in Leicester schools, so they might identify the next child they meet with Asperger syndrome.

Log-in as an existing print or digital subscriber

Forgotten your subscriber ID?


To access this content and the full TES archive, subscribe now.

View subscriber offers


Get TES online and delivered to your door – for less than the price of a coffee

Save 33% off the cover price with this great subscription offer. Every copy delivered to your door by first-class post, plus full access to TES online and the TES app for just £1.90 per week.
Subscribers also enjoy a range of fantastic offers and benefits worth over £270:

  • Discounts off TES Institute courses
  • Access over 200,000 articles in the TES online archive
  • Free Tastecard membership worth £79.99
  • Discounts with Zipcar, Buyagift.com, Virgin Wines and other partners
Order your low-cost subscription today