Reflections

The spectrum of Asperger’s syndrome is expanding, writes Brenda
Wall. Only a few years ago AS was said to be a very rare disorder
affecting one in 10,000 people. Three years ago research was
showing one in 100. Most of the research focused on children
identified as not developing normally, and a stereotype was built
up of a child who did not want social contact.

This stereotype was changed mainly by mothers who denied that it
applied to all Asperger children. Their children did give and want
to receive affection, did want friends, enjoyed playing games,
musical instruments, and had a sense of humour. Researchers
expanded the spectrum to include the children who wanted social
contact but were unable either to initiate it or to maintain it.
Friendship groups attempted to help Asperger children and adults
adapt their behaviour so they would not feel so excluded from the
rest of society.

As Asperger awareness grew, so did the number of people asking for
help with family members who were at the top end of the recognised
spectrum. These people, often with above average IQ, had a history
of not being able to keep a job or a relationship because of their
poor social and communication skills. With the growth of books
written by adults with Asperger’s, many parents reading the new
literature in an attempt to help their child recognise either
themselves or their partner (sometimes both) as being on the
spectrum, and find the reason for many of the difficulties
experienced in their relationships.

What does not seem to have been recognised is the implications for
society of this explosion of people affected by AS. Human
relationships are built on communication, so trying to have a
relationship with a person who you do not know has a communication
disorder is bound to be difficult. Research in Holland found that
80 per cent of marriages with an Asperger partner ended in divorce,
but there has been no such research in the UK. Asperger adults are
vulnerable to depression and frequently misdiagnosed by
psychiatrists who have scant knowledge of the condition.

Some of the symptoms of Asperger behaviour are a lack of common
sense and foresight, inability to see cause and effect or
consequences, and a lack of insight into the emotions and thoughts
of others.

I know from personal experience the impact that Asperger’s syndrome
can have on families. In the 1990s I started a UK network of
partners and supplied the information which resulted in the
worldwide internet network of families of adults with AS, www.faaas.org Over the past seven
years I have listened to hundreds of wives, mothers and children of
adults with AS talk about years of frustration as they tried to
find non-existent help. Adequate support services will not happen
until everyone realises the true extent of the problem.

Brenda Wall runs the Asperger Backup Campaign in
Bournemouth.