News

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."