A campaign group has been issued with assurances after claiming the needs of the 80 per cent of autistic people who do not have a learning disability are being overlooked as part of a move to transform support and services for those with the life-long neuro-development condition.
Yorkshire Adult Autism self-Advocacy Group founder Roger Tuckett told a meeting of North Yorkshire Council’s scrutiny of health committee while the authority was continuing a public consultation over the needs of autistic people it was not taking into account most autistic adults.
He told the committee undiagnosed autism had had a major impact on many aspects of his life, and yet the All-Age Autism Strategy the council was set to launch in the summer would not be based on experiences of people like him.
Mr Tuckett asked councillors whether they expected autistic adults, their families and carers and the public to have confidence in the outcome of the process to create the strategy and highlighted how only one person on a strategy advisory group was autistic.
However, the meeting heard the draft strategy had been developed by a wide range of people, including scores of people with autism, their carers and families, alongside representatives from the community and voluntary sectors, the council, heath services, police, probation, education and employment partners.
Officers emphasised the strategy had been developed following discussions with the “wider autism network of autistic people, carers, staff and partners” who had contributed their experiences and ideas through events, workshops, surveys and conversations.
The strategy’s priority areas include education and preparing for adulthood, employment, housing, carers, assessment, diagnosis and support, health and care, adult and youth justice and inclusive communities.
The strategy features pledges to work with autistic people and employers to develop training and information about supporting autistic people to get a job and do well in work as well as examining the housing needs of autistic people.
Crucially, the draft document also underlines an ambition to improve the support children, young people and adults get before and after they are diagnosed as autistic and look at ways to reduce the waiting times for an assessment.
The pledge comes a year after NHS bosses in York and North Yorkshire launched a pilot of a system for adults seeking an autism diagnosis in response to rising demand and long waiting times.
The move, which saw people wanting a referral for a diagnosis have to fill in an online questionnaire to prioritise those most at risk, but saw 85 per cent of requests for a referral rejected.
The meeting heard officers were confident that the strategy consultation had “reached as many people as we can”, but they recognised there were “gaps in the data” and that had been included as a commitment in the strategy to do more.
They said the most up to date information had been used to inform the strategy and told councillors they had met a range of autistic people when considering the strategy, adding: “once you’ve met one autistic person you’ve met one autistic person”.
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