I am sending you a copy of an article from The Times
TUESDAY DECEMBER 05 2000.
I am aware that this article has offended many individuals who have
Aspergers Syndrome, including myself. I am aware that Larry Arnold, Others
and myself have complained to The Times and the National Autistic Society.
The article is linking Aspergers Syndrome with Crime, this seems to be
becoming very popular within the medical field with others Specific Learning
Disabilities which includes Dyslexia, Attention Deficit Hyperactivity
Disorder(ADHD), Dyspraxia and other conditions on the Autistic Spectrum
Disorders, including Aspergers Syndrome, Central Auditory Processing
Disorder etc.
I would like to hear other peoples views and would welcome people on this
chatline to make complaints with the individuals mentioned from
Neuro-Diversity Action who are at: [log in to unmask]
Hope to hear your thoughts and look to your support.
Mr Colin Revell
A positive outlook
A new organisation is helping adults with Asperger's syndrome to cope with
everyday life. Deborah Dooley reports
The process of help and support for a disability relies on a timely and
accurate diagnosis, requiring expert assessment. However, in the case of
Asperger's syndrome, this is often not forthcoming.
Named after a German psychiatrist who first described the condition in the
1940s, Asperger's causes problems in areas of social communication and
interaction. It is regarded as part of the autistic spectrum disorder, but
unlike people who are classically autistic, those with Asperger's syndrome
often do not have learning difficulties and have far fewer problems with
language. Asperger's is mostly a male characteristic and it is thought that
36 in every 10,000 people in this country are affected. However, experts say
that most of cases are undiagnosed - and many sufferers may be responsible
for a statistically significant proportion of crimes committed.
As expertise increases, more and more children with Asperger's are picked
up - but many still slip through the net, emerging into adulthood confused
and misunderstood. And while there is special support for children who are
diagnosed as having Asperger's, provision for adults is practically
non-existent.
In October last year, spurred on by what he saw as a very real need, Dr
Shripati Upadhyaya, (known as Dr Shri), a consultant psychologist at
Bradford Community Health Trust, set up SACAR, an organisation that helps
adults with Asperger's to learn the social skills they need to reintegrate
into society. Sacar is a Sanskrit word that means "giving a positive shape".
He and a team of helpers involved in SACAR run sessions each week in a local
church hall.
"These are intelligent people," he says. "Indeed, some obtain Masters or PhD
degrees. But they don't understand the basic rules of society. They want to
be sociable and make friends - but it's difficult for them because other
people are put off by their odd manner. We're teaching them how to modify
their behaviour so that they can become accepted - and have an easier life."
Dr Shri has diagnosed Asperger's syndrome in adults who have thus far been
labelled rude, difficult or eccentric. Some have already had dealings with
police and social services. Inevitably there is a sense of relief from
parents, spouses and relatives, but also feelings of anger at the struggle
which could perhaps have been avoided had the diagnosis been made years
earlier.
Jo Douglas, a chartered psychologist and spokeswoman for the National
Autistic Society, says Asperger's has been recognised only in the past two
decades. "There are still many professionals who are uninformed about
Asperger's - and because of the comparative subtlety of the symptoms and the
fact that people with Asperger's are at the higher functioning end of the
disability scale, expectations may be higher - which increases the pressure
on them. However, due to the naivety of their social interaction, people
with Asperger's tend to be easily influenced - often in a negative way, and
because of this they can be very vulnerable. Learning the basic social
skills would certainly be a way of improving quality of life for people with
Asperger's - and I welcome any kind of work which achieves that."
Typically, people with Asperger's excel at facts and figures, but find it
impossible to think in an abstract way. Taking statements literally is
usual - a person with Asperger's syndrome might well feel confused by a
comment such as "If I eat any more I'll burst," or "time to stretch your
legs". They tend to like a routine, becoming upset if there is any change,
and often they become obsessive about a hobby or collection.
Inappropriate behaviour such as standing too close to someone and talking
"at" them without pausing to listen is also a problem. And although people
with Asperger's speak fluently, it is often in an unusual monotone and the
tendency is to be over-frank. But as Dr Shri points out, this is all part of
their inability to relate to others and a lack of comprehension of what is
expected.
"Some people with Asperger's shoplift," he says, "but when they are caught,
they have money on them to pay for the goods. The point is that they have no
idea of the concept of stealing. However, if it is made clear to them that
this is wrong - and reinforced with supervision, that concept can be
learnt."
Sessions organised by SACAR always begin with a cup of tea and a chat and
then the "games" start. These are cognitive exercises, designed to equip
people with Asperger's syndrome to cope with everyday situations - to learn
empathy and social rules. Recognising changing facial expressions is a
problem for them, and this is tackled by getting participants to form two
rows facing each other. One row then turns away and makes some small change,
removes glasses perhaps or brushes hair differently - and then turns back.
By looking for the change, people with Asperger's are being trained to spot
alterations in someone's expression, helping them to assess reactions.
Role-playing is an important part of the sessions and Dr Shri describes how
unfortunate real-life situations have been used.
"We had one occasion where a client turned up on the doorstep of one of the
staff late at night, with no warning. He saw no problem with it and had
misconstrued a friendly gesture. So we did a role-play about understanding
when people say things along the lines of 'you must come and visit', and
checking when people really want you to come round."
Richard Tottle, 22, from Shipley in West Yorkshire, has been attending SACAR
sessions since they started. At first, he says, he found being with a group
of strangers difficult, but now he looks forward to the session.
"I love all the activities we do," says Richard, "and I know that going to
the group has made it easier for me to socialise. I really like being with
people but it's hard because they find me abrupt and strange. I've made lots
of friends in the group, but now I think I could make some outside too,
which is good because I've never really had any friends before."
Richard's condition was diagnosed as Asperger's only last year, although his
mother, Jacqui, says she has long suspected he had some form of autism.
"We were always told that Richard had learning disabilities," she says, "but
I knew it was more than that. Although he seemed a happy boy, he was unable
to form friendships. But we have always loved and supported him. Despite the
fact that doctors told us Richard would never achieve much, he has done a
catering course and held down a good job in that field."
In the past Jacqui, who works as PA to an assistant director, admits to
worrying about what the future held in store for her son, but thanks to
SACAR, she is now optimistic.
"Since he has been going to the group, Richard has come on in leaps and
bounds," she says. "And just learning how to behave around other people has
meant that he can live independently in his own flat. He has gained a lot
confidence and he's absolutely charming - a delight to be around. I could
take him anywhere and be proud of him."
SACAR is run by professionals, parents and carers of people with Asperger's
and is applying for charity status. The organisation also runs candle-making
and art classes in a day unit and has recently received funding from MENCAP
towards a project aimed at helping people with Asperger's to publish their
writing. Grants have also been received from Bradford Council, for an
exhibition of art work, Bradford City Primary Care Trust, for training of
GPs and carers, Bradford Health Authority for physical fitness sessions (to
combat the clumsiness which is typical of Asperger's), and Yorkshire Art,
towards social-inclusion strategies. Dr Shri feels very positive about the
benefits for people with Asperger's.
"We can see a big difference in the people who have been attending
sessions," he says. "They are less awkward and more relaxed socially and
they have a good basic grasp of the kind of behaviour that's acceptable.
"With the right support, a lot of people with Asperger's can live
independently. The more unpleasant aspects of their condition - stealing and
stalking - stem from the isolation they feel because they cannot make
friends. But they have a great deal to offer society - efficiency,
punctuality, outstanding memory - and are to be found in some of the most
distinguished professions. We just need to teach them some social skills to
prevent them from indulging in antisocial behaviour and crime, and to help
them to achieve and maximise their potential."
Jacqui sums up SACAR's contribution in a way that parents will relate to.
"Although life has been hard for Richard, I know that with a little bit of
help and support he will make his way in the world. He has enriched my life
in so many ways and deserves all the happiness he can get."
The National Autistic Society helpline: 0870-600 8585 or e-mail;
[log in to unmask] For more information on SACAR, you can call Dr Shri
on 01274 223212, or e-mail him at [log in to unmask]
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