On their own

Services for children with autism have
improved, with identification and diagnosis occurring earlier. But
for adults with autism there are few services and residential
placements, leaving many individuals and families with no support,
reports Natalie Valios.

The term “autistic spectrum disorder” covers a
variety of forms of autism, from low functioning autism, where
people are less able and may also have an additional learning
difficulty, to Asperger’s syndrome, which describes people at the
higher functioning end of the autistic spectrum. Autism is a
lifelong developmental disability affecting the way an individual
communicates and relates to people around them. The most likely
cause is considered to be genetic. It is more prevalent in
males.

First
identified in 1943, autism was traditionally considered to be quite
rare, affecting four in 10,000 people. More recent figures,
however, reveal a significant increase in reported cases. Research
from the Medical Research Council concludes that about six in 1,000
young children have an autistic spectrum disorder.¹
However, it is not known whether there is a genuine increase in
prevalence, or just better diagnosis because professionals have a
greater understanding of the condition. What is known, though, is
that there is no cure, and children with autism or Asperger’s
syndrome become adults with the disability.

There
are an estimated 160,000 adults in the UK with high functioning
autism and Asperger’s syndrome. The Cambridge Lifespan Asperger
Syndrome Service is a national clinic that diagnoses adults with
this form of autism. The fact that adults come from all over the
country to the centre is a reflection of the lack of facilities
available for diagnosis, says Simon Baron-Cohen, co-director of the
Autism Research Centre at the University of Cambridge.

“When
today’s adults were children, no one was looking out for autism so
many will have been missed,” he says.

And
now, while identification and diagnosis are improving during school
years, for adults they are less reliable and services become less
satisfactory as a child becomes older.

Parents can be left scrabbling
around for a residential or day care placement on the eve of their
child’s 19th birthday, says Judith Barnard, director of policy and
public affairs at the National Autistic Society. A significant
proportion of these will get no help as there aren’t enough support
services, day care or residential placements specifically for
adults with autism.

Essentially, adults with an
autistic spectrum disorder fall into two camps – those who need a
high level of support and would be best cared for in a residential
placement or by their parents with support and respite at home, and
those who are capable of living more independently and gaining
employment if they were supported to do so. Either way, there are
not enough appropriate services available.

A
survey by the National Autistic Society² reveals that
about 32,000 adults with high functioning autism or Asperger’s
syndrome would be capable of living independently with a few hours
support each week. Providing services to support them into
employment and independent living could save the government up to
£25bn over their lifetime, it says.

Just
under half of adults with autism or Asperger’s syndrome are still
living with their parents. Almost two-thirds of this group have not
had a community care assessment, although this is the main route
through which disabled adults can access social services.
Consequently, they are unlikely to be known to statutory agencies
who could be supporting them.

Families are shouldering the
burden of care for their adult sons and daughters, resulting in
family breakdowns, parents becoming lifelong carers and both adult
and parent suffering mental health problems, adds the
report.

Parents become worn out with
fighting for what they want for their adult son or daughter, agrees
Alison Forbes, chief executive of Hoffmann de Visme Foundation. The
charity runs six residential homes in north London for adults with
autism, as well as a day service, an Asperger’s counselling service
and an outreach service.

Services are expensive because
high client needs require high staffing ratios, for example, 16
staff are necessary to look after six people in one of its
residential homes.

Forbes
says:”Social services departments are letting them down in terms of
care because they are not coming up with the money. They are not
always making autism a priority or recognising the amount of money
that is required beyond a learning difficulty service.”

She
would like to see a selection of residential options for people
with autistic spectrum disorders from funded residential homes to
supported living models with minimal care on tap.

In
England and Wales it had been hoped that the Valuing
People white paper would clarify what services should be
provided for people with high functioning autism. Instead,
professionals were dismayed to discover that it excluded people
with an autistic spectrum disorder where there is no accompanying
learning difficulty, although they were included in the
corresponding Scottish learning difficulty review.

When
the National Autistic Society drew the government’s attention to
the fact that some social services departments were withdrawing
services on the back of the white paper, ensuing implementation
guidance made it clear that if someone with an autistic spectrum
disorder needed services they should have them. Users’ services
were subsequently reinstated.

This
year, the Disabilities Trust and the British Institute for Brain
Injured Children have decreed it is autism awareness year – it
would appear that it is needed.  

– For
more information on autism go to www.nas.org.uk , www.mrc.ac.uk   or www.autism.awareness.org.uk
, or call Hoffmann de Visme Foundation on 020 8342 7310.

¹Medical Research Council,
Review of Autism Research, MRC, 2001

²J Barnard, V Harvey, D Potter, A
Prior, Ignored or Ineligible? National Autistic Society,
2001

“His face was Black and Blue”

Hearing the words “happy”, “polite” or “nice”
are enough to make 38-year-old Ken Andrews (not his real name)
start bashing his head against a wall. As a child, this behaviour
was shrugged off as “a phase he was going through” by the family
GP.

The term “autistic” was not used to describe
Ken until he was 10. He joined a special school when he was seven,
staying there until he was 19. During his school years, the family
received no financial support or respite care.

When Ken turned 19, his parents were persuaded
by the school that he should go into residential care and
recommended a home in north Wales. It was an “unmitigated
disaster”, says his father Steven (not his real name).

On one occasion, Steven went to pick his son
up for a weekend at home and walked straight past him. “I didn’t
recognise him. His face was swollen, black and blue from where he
had been hitting himself. He had been pulling his hair out by the
roots. And they’d let him do it.”

Even now, Steven is upset by these memories.
After three years at the home, Ken returned to his parents.

Over the intervening years, Ken’s parents have
struggled with no respite or support services at home. At the
moment, Ken uses an outreach service and has respite care one
evening a week and one overnight stay a month.

“The big worry is what will happen when we
die,” says Steven. A flat is earmarked for him in a supported
living scheme with one-to-one support funded by the local
authority. But it will take time to find suitable support
staff.

“Twenty years ago no one knew anything about
autism,” says Steven. “Things have moved on since then, but there’s
no doubt that facilities for people with learning difficulties, and
particularly for people with autism, are grossly underfunded.”