The Liberal Democrat care services minister Norman Lamb launched Think Autism, the “refreshed” strategy for adults with autism, at Saracens rugby club in north London this week, but activists are angry that he announced no major improvements.
Lamb said there was a “new focus on building supportive communities, promoting innovative local ideas and services and improving advice and information for people with autism”.
He and three other ministers admitted in the strategy’s foreword that during a review of the strategy over the past year they had “sadly heard from many people with autism and their families and carers who say that things have not yet changed enough for them”.
Lamb announced £4.5 million in ring-fenced funding, part of which will be spent on a new Autism Innovation Fund to “help drive creative and cost-effective solutions, and identify new models of good practice that could be replicated in other areas”.
There will also be an “awareness” programme, which will aim to make communities more autism-friendly, but most of the 33 actions described in the new plan appear to be new guides, feasibility studies, reports, updates, working groups, evaluations and responses, rather than more concrete improvements to services.
Autistic UK, which is run and controlled by autistic people, said Lamb had missed an opportunity to put right flaws in the strategy that had been apparent since it was launched in March 2010 by the previous Labour government.
Russell Stronach, chair of Autistic UK, said: “It is not going to address the fundamental flaws we pointed out four years ago.”
Autistic UK wants local authorities and clinical commissioning groups to be forced to work in partnership in all local authority areas in England, with “detailed and binding” government guidance on how this should be done, and for these local strategic planning groups to include “meaningful” representation from people with autism.
Autistic UK also wants every area to set up local services for diagnosing autism, and provide local multi-disciplinary and NHS-funded multi-agency teams of social workers, nurses, clinical psychologists and other professionals, to provide support for autistic adults.
Autistic UK believes there is a “postcode lottery” in local autism diagnostic services, with “huge gaps and large parts of the country which have nothing at all”.
Stronach said Autistic UK was hearing of lengthy waiting-lists to be diagnosed, including up to four years in Cheshire, two years in most of Essex, and up to 18 months in the north-east. In many areas, there is no diagnostic service at all.
He said the only “promising” aspect of the refreshed strategy was the prospect of a public consultation on new statutory guidance, expected later this year.
Stronach said the “fundamentally flawed” strategy would now be essentially unchanged until it was reviewed again in five years.
He said: “The Autism Act calls for the secretary of state [for health] to put in place a strategy that will meet the needs of autistic people in England by the improvement in provision of services.
“We are arguing that three successive secretaries of state have not done that because the strategy we have got does not meet any needs and does not improve any services.”
Autistic UK now wants the Commons health select committee to hold an inquiry into the government’s failure to comply with the Autism Act.
Stronach said: “We are four years down the line now and as far as we can see the act and strategy have made very little difference to anybody’s life.
“We are not finding startling examples of good practice, and we are finding an awful lot of the ‘same old same old’.”
He also said he was unhappy with the government’s language, which insisted on using the term “adults with autism” rather than “autistic adults”.
He said: “We don’t have something, we are something. This is not a matter of choice as to how we might prefer to have others refer to us. There is no choice and it is a simple matter of fact.”
The National Autistic Society, which is not user-led and was named in several of the government’s actions, was more positive about the new document.
Mark Lever, its chief executive, said Think Autism would tackle “core issues that affect the quality of the lives of adults with autism: understanding and awareness, and the development and delivery of better services”.
But he said this would “only make a difference to people with autism and their families if local authorities and health services establish the best possible plans for local services, and if we in the autism community and the general public help create communities where adults with autism feel understood”.
2 April 2014