The new national strategy for adults with autism is proving to be “seriously flawed” and “dreadfully disappointing”, according to autistic rights campaigners.
The Autistic Rights Movement United Kingdom (ARM UK) spoke out as the government published new statutory guidance for local authorities and the NHS across England.
ARM UK, which is a user-led organisation, has been highly critical of the strategy – published by the previous government in March – over its failure to demand real change from public bodies.
The new guidance focuses on staff training; diagnosis and assessment of needs; support for young people with autism as they move into adulthood; and local planning and leadership in provision of services.
But one of its “underlying principles” is to “avoid new burdens or extra requirements” on health and social care professionals, with the emphasis instead on “making sure existing policies are followed”.
ARM UK criticised the failure to force local authorities to set up autism partnership boards – the guidance suggests instead that they might want to “consider” setting one up – which could allow people with autism to hold councils to account.
ARM UK also pointed to the absence of regional bodies that could monitor implementation and compare progress across different local authorities.
Russell Stronach, co-chair of ARM UK, said the “vast majority” of people with autism would not receive improved support services from their local authority, with those with higher support needs continuing to receive services for people with learning difficulties, while those with lower support needs would be ineligible for services from cash-strapped councils that are being forced to make cuts.
Stronach said: “The whole strategy is proving to be seriously flawed. The will of parliament is being subverted and the hopes of all those people out there are being dashed.”
He said the guidance was “a bit clearer” than the draft version but “generally it is the same situation – it’s not strong enough”. He said it was “dreadfully, dreadfully disappointing”.
Adrian Whyatt, also co-chair of ARM UK, said there had been “some improvement” in the guidance since its draft version was published, including “a recognition of the need to tackle sensory overload in the built environment”.
But he said there was a string of omissions in the guidance, including the need for “universal design” and the vital concept of “neurodiversity”, which explains the “uneven profile” that neurodiverse people – including those with autism – have in processing information.
He said such an explanation was “essential for a proper understanding” of how to meet the “needs and aspirations” of neurodiverse people.
Whyatt added: “If they had listened sufficiently to the voice of neurodiverse – including autistic-led – organisations, then all of this would have been there.
“Only by listening to us fully and properly will we get a strategy and guidance which work.”
Sarah Lambert, head of policy for the National Autistic Society (NAS), said the guidance had been “significantly improved” since the draft version and was “a massive step-change”.
She said it would impose important new duties on councils to assess the needs of people with autism properly, although she said there were “obvious problems in terms of cuts”.
Lambert said the NAS would work with local campaigners to push for autism partnership boards in every part of the country.
A Department of Health spokeswoman said: “Although the guidance does not impose a direct requirement [on]local authorities to set up autism partnership boards, local authorities and NHS bodies must follow this guidance or provide a good reason why they are not doing so.”
And she said that a set of “key outcomes” and “service ambitions”, to be published soon, would help local populations and service commissioners and providers compare progress with other areas.
She said the strategy and guidance were about “making existing resources work better for people with autism”.
Meanwhile, a protest organised by the London Autistic Rights Movement and ARM UK took place outside the event where the guidance was launched, over the lack of user-led representation on the body overseeing the strategy’s implementation.
21 December 2010