Stuck in the middle

In The Curious Incident of the Dog in the Night-time
the 15-year-old narrator, Christopher, highlights just how hard
life can be when you’re “different”. The book won this year’s
Whitbread prize and could well do for Asperger’s what Barry
Levinson’s Rainman, starring Dustin Hoffman, did for
autism 16 years ago: bring a largely ignored disability to the
notice of the public, albeit in a stereotypical way.

Even so, autistic spectrum disorders remain misunderstood. And
because they are neither a learning difficulty nor a mental
illness, people who have them tend to find themselves in a void
between services.

Autism Awareness Week will be launched on 17 May under the slogan
Planning for Life, which will focus on issues around the transition
stages of life. One such stage is when people finish full-time
education. According to Paul Shattock, director of the National
Autism Research Unit, this is a time when many people on the
autistic spectrum find themselves “cut adrift”.

“They want to move on but they discover there is nothing out there
for them,” he says. “I come across many cases where people are
living in very poor conditions -Êthey can’t cope, yet they get
no help whatsoever from social services.”

Shattock believes professionals are going to encounter an
increasing number of people with autism. “Over the past 10 years we
have seen a ten-fold increase in the number of small children with
a diagnosis of autism. Some say this is due to better diagnostics
but I believe if they had been around 10 years ago we would have
noticed.”

As for the cause of the rise, some argue the MMR jab might be one
factor, others point to the use of mercury in vaccinations. “But
whatever the reasons we need to start making provision for these
people because many of them will need support,” he says.

Adults on the autistic spectrum are often mistakenly regarded as
people whose problems are best treated by psychiatrists. Dinah
Murray, a tutor for autism courses at Birmingham University, says:
“Because of their communication problems they are not seen as
people with intelligence and capacity, and the result is they are
bored out of their skulls.” If they start showing their annoyance
with life this is pathologised as “challenging behaviour” and they
are likely to be stupefied with harmful drugs.

Murray and other campaigners believe one way to tackle the
exclusion of people on the autistic spectrum is the use of
information technology as many find it easier to communicate using
a computer than through social interaction. Equipping people with
IT skills could also boost their job prospects. Only about one in
10 of people on the autism spectrum have jobs and of those many are
trapped in dead-end paid work well below their capability.

Gavin Owen, policy and campaigns officer for adults at the National
Autistic Society, says many local authorities are ignoring guidance
sent out by the Department of Health in 2001, which says that
people with autistic spectrum disorders are entitled to learning
difficulty services and should receive a needs assessment.

“But even where that happens the major obstacle comes when they try
to access care services,” he says. “We have one case where a child
has spent their whole life in a residential school. Now it’s time
to move on but they have been assessed as ‘medium’ need and qualify
for no support.”

The society supports the draft Disability Discrimination Bill but
believes it does not go far enough. “We want autistic spectrum
disorders to be categorised as a disability in their own right. At
the moment, they are often dismissed as a developmental or
communication disorder,” says Owen.

Last year, the parliamentary all-party group on autism published a
manifesto setting out a vision for a society where people with
autism could fulfil their potential. But, one year later progress
has been limited, even though the group’s former chair, Stephen
Ladyman, is now health minister.

Initiatives such as direct payments have been of limited value to
this group because the widespread lack of training in autism
awareness has made it difficult to find staff with the right
skills. Meanwhile, most of those with autism in their twenties and
thirties are still living with their parents. Independent living is
out of reach because of a lack of support -Êeven though some
only need a couple of hours a day.

A lack of understanding and intolerance of difference on the part
of the public and some professionals leave large numbers of people
on the autistic spectrum unable to reach their potential. Not all
are loners in the Rainman mould but even those with major
communication problems could live more fulfilling lives with the
right support. But at the moment, unless the individual has some
sort of crisis, that support is just not available.

The Autistic Spectrum

Also known as pervasive developmental disorder, the autistic
spectrum can be broken down into five conditions:

• Autism – difficulty forming relationships, communicating and
  with imagination.
• Asperger’s – as above, though often of above average
  intelligence.
• Dyspraxia – co-ordination problems.
• Tourette’s – uncontrollable vocalisation and movement.
• Dyslexia – difficulty with reading, writing and spelling.

Parental support proved crucial   

Tom Morris has Asperger’s syndrome. Here Tom, his father and
Tom’s supporter relate their experiences. 

Morris says: “I moved out of my parents’ house seven years ago
when I was 28. I would have liked to have done it earlier but I
couldn’t. I’m glad I got a job through an agency. They had some
other jobs but I went to work in a library and it’s very good. I
like stamping labels and shredding and shelving CDs and
videos. 

“I do things after work like my art work and playing the organ
and I sing in a choir. My life is OK.”  His father, Geoff, knew his
son had a problem but says that Tom wasn’t diagnosed until he was
in his early twenties. “We had a friend in social services who told
us that there was no way he would qualify for any help because he
was not in a life-threatening situation. 

“We went to various talks but when it became clear there was no
support we set about organising it ourselves. The huge gap for Tom
is that he doesn’t have a friend, there’s no one he can ring and
say ‘do you fancy a pint?’. 

“He likes to be thought of as ‘normal’ and doesn’t want to
associate with people who have the same condition as him. Tom is
lucky but what happens to people like him who don’t have parents
like us? What happens is they end up sleeping in a cardboard box.” 
Andrew Holman, who helps support Morris to live independently,
says: “When Tom was ready to move out of his parents’ place he
needed support but he fell outside Cambridgeshire social services’
eligibility criteria. Initially, he needed support to find a job
and come off benefits. Now he needs help with the practicalities of
everyday living.  “Social services tend to wash their hands of
people like Tom. Thanks to his parents he’s doing ok, but without
them the story could have been very different.”

Empty talk about inclusion

Carolann Jackson runs a group called Safe (Support
Asperger’s Families in Essex) with more than 1,000 members.
Her daughter Nita was diagnosed with Asperger’s when she was
15.

Jackson says: “Safe has found that there are virtually no
services for this group unless they are blessed with a learning
difficulty, and I use that term deliberately. Otherwise your child
has to be about to slit their wrists before you stand a chance of a
professional taking any notice.

“I was told my daughter’s problems were down to bad
parenting. The message was ‘Does she have a learning
difficulty? No? Then goodbye’. It was only when she developed
mental health problems that she finally got some sort of
service.

“There is a lot of talk about inclusion but it’s not
happening for people on the autistic spectrum. My daughter managed
to get six O-levels and three A-levels. But when she went to
university, she left after six weeks because of bullying. She
wasn’t physically assaulted but they just left her out of
things. She couldn’t cope with not being accepted, so she
gave up.”

Scotland shows true support

Scotland seems to be way ahead in recognising the support that
autistic people need, writes Louise Tickle. This has been
illustrated recently by the Scottish executive’s award of a
£2m package to help people with autistic spectrum
disorders.

Projects include an information pack designed by parents whose
own children are autistic. This will be rolled out across Scotland
with funding of £300,000. The pack will be handed to families
on the day of diagnosis to allay parents’ fears and help them
access services in their areas as efficiently as possible. A
complementary pack for social care professionals will also be
available.

Improved training for care staff was identified as a priority,
and a unit dedicated to autistic spectrum disorder will be created
with funding of £40,000 offering training in appropriate
skills at Scottish vocational qualification levels three and four.
This is the first qualification of its kind. The training programme
should be available in a year.

Edith Wellwood, learning and development adviser at the Scottish
Social Services Council, says: “It has the potential to train
people in addressing and understanding a specific condition, which
isn’t usual with SVQs.”

Two NHS boards will receive £750,000 to develop one-stop
shops for adults with the condition and their families. In Glasgow,
the money will be used in an initiative between NHS Greater
Glasgow’s Primary Care Division, Glasgow Council and
voluntary agencies to create a new multi-disciplinary team
specialising in the diagnosis of autism and pointing people in the
right direction for services.

The team will include speech and language therapists, nursing,
psychiatry and psychology professionals. The intention is to create
a network of mental health, primary care and learning difficulty
experts so that referrals of patients already diagnosed can be made
swiftly and to the appropriate agency.

Other funding includes £80,000 for NHS Education for
Scotland to develop training resources for multi-disciplinary care
teams. And, to inform future best practice, £53,000 will fund
a retrospective study into the way people with autistic spectrum
disorder have been helped.