Adults with a form of autism feel that they are being seriously let down by the NHS, a new report has revealed.
A nationwide study into adults with Asperger Syndrome (AS) - believed to be the biggest of its kind ever conducted in this country - surveyed more than 200 people with the condition about their needs and experiences.
The report discovered that individuals are having major problems trying to get their condition diagnosed, with the average age of diagnosis being 29, and even after diagnosis, as many as 86 per cent said that they received no support or not enough support from their health authority.
Shockingly one respondent described attempts to kill themselves while waiting to see a professional and another wrote that their GP had never even heard of the condition.
Luke Beardon, a senior lecturer in autism at Sheffield Hallam University, who was part of the ASPECT team which conducted the research said: "A total of 237 questionnaires were received and recorded. As far as we know this is the largest consultation with adults with AS to date.
"The aims of the survey were to allow individuals with AS to voice their opinion, highlight areas of difficulty for adults with AS and finally produce a report that could be used by any party to lobby for better services at a local and/ or national level.
"Personally I am not at all surprised about these results. I work on a daily basis with individuals facing serious problems; lack of expertise amongst professionals is often the root cause of many of the problems, and better awareness and understanding is crucial.
"I hope that this report will be seminal in influencing local, regional and national policy in how to best support adults with AS.
"I would encourage all stakeholder and professionals to digest this report and take direct action based on its recommendations."
The report calls for GPs to have more awareness training on Asperger Syndrome and for levels of support to be clear and consistent throughout all local health authorities.
One respondent wrote, "GPs need to have awareness training on Asperger Syndrome instead of thinking people with AS are mentally ill and need psychiatric help.
"Making GPs more aware is the first step to helping people with AS feel more trusting of the NHS."
As many as 83 per cent who took part in the survey said that they felt strongly or very strongly that many of the problems they faced were as a direct result of others not understanding them and suggested that the condition be made part of an educational curriculum along with other so called 'disabilities.'
The survey received funding from both the 3 Guineas Trust and the Disability Rights Commission.
For press information and interviews: contact Clare Morris at Sheffield Hallam University's press office on 0114 225 4959
Notes to editors:
The ASPECT team (Asperger Syndrome People Each Contributing for Themselves) was a group of seven people who formed specifically to carry out the study. They were a mix of people with AS, a parent and two professionals working within the field of autism/AS.