Aspect Consultancy report out now...

[Canopus]

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 3 guineas trust and the Disabilities Rights Commission.

 

A full copy of the report can be found at the Aspect Action website.

[Mumble]

Thanks for posting that Canopus. Let's just hope it has some impact, somewhere.

[Canopus]

The full report is a weighty tome at 367 pages and it has taken me some time to read through it. Many of the problems highlighted include almost all services for kids and next to nothing for adults, difficulty obtaining suitable employment, and lack of understanding of AS in the NHS.

[pearl]

We are finding a black hole opening up now JP is out of education. His 1st major meltdown last week since leaving college - no one to turn to.

[Canopus]

We are finding a black hole opening up now JP is out of education. His 1st major meltdown last week since leaving college - no one to turn to.

 

This is the beginning and not the end...

 

Asperger Technical gets plenty of emails from people with AS who are having problems at work whilst colleagues and managers are being unhelpful or downright offensive. I will give you a tip of advice that apprentices can be given the boot. I have had a few sacked apprentices with AS come to me for advice.

[Mumble]

I was interested in the sections on university support within the full report. I wasn't sure how I felt reading this. Firstly it was relief that, ok, I'm not the only one having these awful experiences with my uni disability 'support' or in getting appropriate buddying/mentoring and that old "it's not me it's them" thing. But then I got quite angry as I read page after page of comments, many repeating earlier points, the majority of which could be written by me now. What I was really struck by was someone describing their bad experiences with uni 'support' in the 1960s. If I hadn't read the date, I would have thought it had been written today. Very little seems to change - there may be more acceptance of AS/ASDs at uni, but the support required sure as hell hasn't followed this acceptance, and as more and more AS individuals decide to embark on a uni education I think we are sitting on what is often termed a "ticking time bomb". Something is going to have to give, and I fear as to what that might be

[pearl]

This is the beginning and not the end...

 

Asperger Technical gets plenty of emails from people with AS who are having problems at work whilst colleagues and managers are being unhelpful or downright offensive. I will give you a tip of advice that apprentices can be given the boot. I have had a few sacked apprentices with AS come to me for advice.

 

We've no complaints so far with city council. They have v g policies, & we've been impressed by everyone we've met. They are new to AS, we are new to apprenticeships, JP is new to the world of work so its a steep learning curve for all of us, but they are keen to support him & get it right, so fingers crossed. They are bringing him on gently.

 

Sorry I didnt explain v well. The meltdowns would happen anyway due to the huge transition he's going through. His workplace did nothing to provoke it at all. Its just theres no comprehensive support in place like at college. He only has us to talk to at the moment.

Edited September 18, 2007 by pearl

[Laz]

I remember going to the aspect action day last year in manchester and filled out the survey to make this report. There were sadly a few chaps there who i knew from down south and yorkshire way who seemed intent on disrupting things and shoving their problems and issues in everyones faces without letting anyone else speak but well thats the middle aged and embittered for you...Thankfully that doesnt appear to have disrupted the content of the report though i imagine there were alot of asperger people who never even knew this took place in all sorts of situations or disengaged from a wider asperger community of any kind.

 

Its a blessing to come right now when im out promoting an asperger specialist service here in Sheffield its given me an evidence base that just hasnt existed as solid literature/research before. The recomendations in the report slot nicely with what im hopping to do next may when i qualify as an RNLD (Registered Nurse Learning Disability)

 

Does anyone have any recomendations on where i can start lobbying here in sheffield? Im not sure if its worth me going to the various MP's approaching the council or NHS trust? Im meeting with the local parents group here tomorrow night to formally present what ive got planned and ive already brought it up on a thread in general discussions that some of you had fed back to me on. Im just not really sure who to approach so i guess im just going to bombard as many authorities as i can send letters and e-mails too i guess

[pearl]

I've just been reading some of the speaker's presentations. JP wandered in & read them all with me over my shoulder! I think it always suprises him to find people on his own wavelength.