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Autism sufferers failed by care system
Julia Hipkiss's son Ryan, who has autism and severe learning difficulties, is now 18 and has moved from child social care to adult services. Photograph: Howard Barlow
Julia Hipkiss's son Ryan, who has autism and severe learning difficulties, is now 18 and has moved from child social care to adult services. Photograph: Howard Barlow

Care system failing people with autism, says charity

This article is more than 10 years old
Only 23% of respondents to survey thought social workers had proper understanding of condition

Too many people with autism are being failed by the adult social care system, according to a study by the National Autistic Society.

The study, based on more than 1,000 survey responses from people with autism in England or their parents or carers, found only 23% thought social workers had a proper understanding of the condition and 70% believed they were not getting the care they required.

Perhaps more damning still, the society found that more than three years after the Autism Act, which set out the responsibilities of local authorities to meet the needs of people with autism, almost half of councils have yet to set up proper systems to make sure their community care assessors, the most likely first point of contact, are properly trained about autism.

As a consequence, 77% of those with autism were still, as adults, relying on their parents for support. Slightly more than 7% said they were not getting any help at all.

The society's Amanda Batten said the findings were disappointing "but perhaps not surprising to us".

The Autism Act, which came into force in November 2009, set out a national autism strategy intended to stop adults with autism "slipping through the cracks" of care: "There has been some progress but we're a really long way from an understanding of autism being embedded across health and social care. Some authorities are making progress but 46% still don't have a system in place, and that's a crucial factor. It's disappointing, three years after the act and strategy being published."

The nature of autism, particularly the communication challenges the condition entails, makes training for frontline staff vital, Batten said, arguing that cuts amounted to a false economy: "If you don't recognise and meet needs earlier, they tend to escalate. Apart for the consequences for the individual and their family, it ends up being more expensive in the long run.

"It's in nobody's interest to leave people to deteriorate and for their needs to escalate. It doesn't make sense on any level. Training is a really core part of the solution."

Helen, a woman from the Midlands who chose not to be identified fully, said she had personal experience of care staff needing a crisis before they intervened. The 49-year-old, who was diagnosed with Asperger's syndrome as an adult, cut off contact with social workers because she felt they offered so little support, only to need help again when her situation worsened and she was evicted.

She said: "I wanted to go into supported living and the social work team weren't trying very hard with that till the eviction brought things to a head. It shouldn't be like that – it shouldn't have to wait for a crisis. The problem is, I can do the domestic stuff no trouble at all, which is all they can see. But it's all the emotional stuff which is hard for me."

John Nawrockyi, who leads on disabilities for the Association of Directors of Adult Social Services, said autism had traditionally suffered within care services because it was hard to define and hugely variable in effect and severity: "It's not learning disability, it's not a mental illness, it's not a personality disorder – it's not easily characterised. That's why training is needed."

Spending cuts meant there was now less money available for training, he said. Despite this, he argued, things were gradually changing since the Autism Act: "These things are usually about incremental improvement rather than a massive step change. We're not talking about a quick fix here."

Case study: the consequences of poor support

Julia Hipkiss from Chester is only too familiar with the family repercussions of poor care support for autism. Her son, Ryan, who has autism and severe learning difficulties, is now 18 and has moved from the more structured world of child social care to adult services.

The transition, Julia said, was so difficult that it took two years for him to be allocated a social worker. This absence of support saw Julia having to give up her job as a teaching assistant to look after Ryan.

The family finally has more help, but primarily due to two factors: Julia's incessant lobbying of her council and an incident at Ryan's school when his social worker called the police.

"The social worker we've got now has started to listen, but I think that's only because I've persevered, and I'm not going away," she said. "If Ryan hadn't had the family he's got, he'd have been taken to residential care a long time ago. The understanding just wouldn't be there. This isn't about slating the services; it's about trying to put things right, trying to improve things for the families out there."

She has seen no sign of Ryan's social workers being trained to understand autism, with the only expertise coming from those who happen to have experience of clients with the condition.

She said: "A crisis has to happen before anything gets done and then things just get put back to how they were. Rather than dealing with the underlying issues, they wait for a problem, deal with that problem, but nothing fundamentally changes. They need to work as a team and they don't. It's very disjointed."

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