New Report: Aspies Let Down by National Health Service

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Report reveals lack of understanding

Issued 30/08/07

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 3 guineas trust and the Disabilities Rights Commission.

A full copy of the survey can be found at www.shu.ac.uk/theautismcentre and www.aspectaction.org.uk.

Notes to editors:

Asperger Syndrome (AS) is generally accepted to be a form of autism without any additional learning disability. Individuals with AS are of average or above average intelligence. Many individuals with AS have very different perspectives on what constitutes social communication, may not interpret non verbal communication in the same way as their neurotypical counterparts, and may not share the same overall way of thinking.

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.

What say you? Supports what I've been through, at any rate. The NHS DOES suck at dealing with Aspies.

I'm just so grateful they did this study. Understanding arrives only when people go through the trouble of doing this type of research. THANKS. It is all progress.

And I'm also really grateful for having a really great GP who told me, no, it's maybe not ADD but perhaps Asperger's (and then proceeded to encouragingly tell me that being a bit offbeat is really cool, at least to him).

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."

This line stood out for me, after I was told by my GP that she CANT recommend me to a specialist.. it has to be done via a psychiatrist. Basically you have to go to a shrink to tell you its NOT a psychiatric problem, so that they can then forward you to someone who actually knows wtf theyre talking about. Talk about jumping through hoops....

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.

Went to a talk hosted by this dude, and though he's NT, he really does seem to know his s**t when it comes to AS, and genuinely gives a damn about people. Really works at it too. The most annoying thing about it is.. he works in sheffield.. I'm 25 miles away in Doncaster. Different areas, so no hope of falling under his aegis. I'm stuck with Doncaster and its crappy useless Services for Autism.

(Added notation.. I understand that Mr Beardon regularly peruses WP forums, so ello to him if he's passing by *waves*.. *holds up sign saying "Help Me Doncaster SUCKS"* )

Just be thankful in the UK you do have a national health plan that allows you to get treatment for other things even if they don't help much with AS. And I'm sorry they don't help Aspies there, but Aspies aren't getting any more help in the US either. But in the US since we have no health plan available to everyone, millions of people go without treatment for life threatening illnesses. When I had no insurance I went without treatment for a bad concussion, a direct lightning strike, plus a number of broken bones, thyroid disease and a heart condition.

At least you have a place to go when you are sick though. I really don't think there is anyone anywhere that is going to help with AS because the medical profession is not trained on it. Its only a few doctors or psychs here and there that can help and its because they know about AS personally because someone in their family has it or they have a strange fascination with it.

I think thats the grind though. We HAVE a National Health Service thats supposed to help with these things, and they evidently dont. Its a bit like having a pc that wont work. Its way more frustrating than not having a pc at all.

you're not wrong about the lack of awareness though. That seems to be the purpose of this survey.. to push doctors in the direction of actually being aware of AS as a potential diagnosis.. and hopefully cutting the psychiatrists out of the loop completely.

Pretty much my experience. Even the health trust psychiatrist admitted he had no clue about it. It is pretty bad. Mental health is even worse. My experience is on the GPs are just not equipped or trained to deal with these things.

Best advice I can give if you want a referral is go to a GP who is a paediatrician regardless of what age.

That is madness if psychiatrists are not ready to deal with ASD then GP is even less so. They have so little training in any matters of the mind what so ever.

I think more clinical psychologist should be more involved, they at the very least should do the initial ground work make be allowed to referrals if necessary. If it wasn't for my shrink I wouldn't have seek formal diagnosis.

I believe in more specialised general care it is pretty evident that there is more financial incentive to 'cure' high blood pressure, etc than give overall cover.

When I said about cutting psychiatrists out of the loop i meant it thusly:

The current system is.. approach GP with suggestion you may have AS.. if they then decide you might have a point, they will refer you to a psychiatrist.. the psychiatrist will then decide if you do or if you dont, then tell you that AS is not a psychiatric illness, at which point they will refer you to some form of specialist, who will finally be able to actually diagnose you, treat you, whatever.

This is utterly ret*d. If a GP suspects a patient has lung cancer, they dont send them to a chiropodist to tell them its lung cancer, but they cant do anything about it so they will refer you to whoever.... Instead, they should be able to refer them directly to a specialist, who is in a MUCH better position to decide if someone is AS or not. This would save time, cut waiting lists, and most importantly for the NHS.. save money. Psychiatrists claim AS is not a psychiatric illness, so they seem unlikely to be in the best position to decide who has or has not got it.

Well with your NHS system do people with mental disorders get decent treatment? Not that I think Aspergers is a mental disorder because its not. But I mean people that are for instance schizo or bipolar do they get good treatment? Or is the problem that the entire mental health treatment is below par?

In the US the people that are on disability are sometimes able to get on Medicare or State Insurance and from what I hear they kinda sorta get psych visits but they get below standard treatment.

IMO- neither psychiatrists nor psychologists should have a hand in diagnosing nor treating Aspergers and Autism and for that matter maybe even ADHD. Neurologists should be diagnosing it because the AS brain is developmentally challenged and the right pathways are not working. Kinda like with epilepsy their right pathways aren't working and they get like misfirings of the brain and they get treated by neurologists.

I dont think mental health treatment has ever been particularly good, but the real problem IMO is that the NHS is in the early stages of being slowly dismantled/abandoned.

The NHS suffers from being overmanaged and understaffed, so that a great part of the funding pays the wages of non medical management staff. There is also something of a postcode lottery as to how good treatment is. In some areas it is good, even outstanding (not just mental health treatment.. all treatment) and in others it is frankly pathetic. It desperately requires reorganisation into a more efficient beast.

AS to mental health specifically: The difference between the US and the UK appears to be that it is possible for anyone to "go on the books" with the NHS as a mental patient, and potentially receive treatment etc, but what seems to be the case is that, after passing through a pointlessly drawn out and complicated "entrance exam", once you are in, you will often be sidelined or ignored until you do something stupid or illegal or completely over the top. In the US it would appear to be difficult to even get on the books in the first place (or expensive, or both) and if you can, you are likely to be treated like some form of social pariah and incarcerated in some form of asylum for even the most minor issue.

The NHS offers much, but delivers little.. the US services offer bugger all, and deliver concentration camps and torture regimes. (Well, that seems to be the case from matters posted on these forums by US aspies.)

But the point is that mental health is one of easiest things to neglect so they do it naturally. All cut backs will come where people can't fight back.

GP have never really had proper mental health training so the whole system is flawed from the ofset.

I only have like 4 needs related to this. They could be done with resources the US ALREADY pays for, and would be a NET GAIN!

1. Diagnosis
2. A place to meet others likely affected, etc...
3. Understanding
4. Accomodation in school(Including advanced materials/instruction), etc, as they should have done even for NTs all the time.

It is crazy that a few kids attack with guns, and people are talking about midnight basketball, but not even a wimper for the worthy people.

Alas, it requires the government to think and care, and we know THAT won't happen. Also, the average government worker is probably ALREADY worried people are too smart.

Strikes me that if government bodies employed a few more Aspies, things would get done a damn sight more efficiently.

I get what you are as saying but you could just as well cut GPs out of the loop by the same argument. Don't expect that you are going to get a referral at all. I don't think the long term solution is to cut more people out. Training needs to be there across the board.

It is apparent that there are almost no neurologists specialising in autism in this country compared to say USA. They are not needed for every diagnosis but some people do need a little more than just psychiatric like myself I really don’t know what to do. Even the consultant said he’ll look into it but has yet to get back to me.

I believe, as with the centre that I went to, that the main diagnosis should be done by a psychologist and then you can be seen by a physician as well afterwards. That was the system I had at the centre I went to, but it was not NHS, because my NHS appointment hasn't even come through yet. Even the psych that ‘approved’ funding doesn't even have authority to hand out the money any more. He himself then has to apply for my funding centrally. It seems to me all these systems are designed to stall so that people don't bother or kill themselves so they can same money. Private is too expensive especially if you need more than just a diagnosis.

Medical students applying for UK jobs are at an all time low. But psychology students are absolutely overflowing. You only need a small number of them to specialise in order to make a difference.

Last edited by 0_equals_true on 05 Sep 2007, 7:18 am, edited 1 time in total.

Well ideally, if you thought you had X thing, you would be able to make an appointment to see a specialist in X.. they could then tell you if you did or if you didnt.. in much the same way as you can already do in some cases.. (dentists are medical specialists too.) However, GPs are something of a safeguard against time wasters, even if all they seem to do these days is hand out anti-depressants and forward you to someone who knows wtf they are doing.

It just seems nonsensical that a GP HAS to forward you to the WRONG department, in order to send you to the right department. But you're right, its all about the funding. By making you jump through hoops and f**k about, they increase the chance you will either die or just blow the whole thing off in frustration, thus saving money.

Thinking on it, it also seems daft that, if you go to a GP and say " I have a cold, or a broken leg." they will generally accept this level of self-diagnosis and work from there to create their own.. but if you dare try it with something like AS.. they seem to start from the basis that you couldnt possibly know a damn thing about your own mental state and that they know better, despite NOT being mental health specialists.