Help in getting an Aspergers diagnoses in England as a Adult

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I've just started a new thread here, describing my experiences.

A Route to Diagnosis: an experience

(EDIT: That's a link above, to elsewhere on the WP forums. It just doesn't look like one.)

Hi,
I was assessed on the NHS at the CLASS clinic Cambridgeshire.It was free and it is the best place to be assessed at. NHS is exactly like being assessed privately. Don't fret...just do it!

All those considering private assessment, please be aware that often the NHS doesn't recognise a private assessment for the purposes of using their services. If you wanted to use NHS services you may have to go through their assessment process in addition to your private one, so in that case you'd be wasting your money. Check also that any official body (DLA, benefits or similar) accepts a private diagnosis. Just be aware.

General consensus seems to be that in most places in the UK NHS assessment is a bit of a nightmare, though if you are lucky enough to be in London or Cambridge or another city equipped with a specialist autism practice you might find that you have access to people who are experienced with diagnoses of autism in adults, which is really the key. If you can get that access, you might find the NHS route is fine. Most people don't seem to have that experience, however.

Personally, I'm in the middle of nowhere and due to previous experience with a diagnosis that was slightly unusual I know how long and difficult a process it would be, so I'm currently seeing a psychotherapist with experience diagnosing adult autism privately. I have checked with her, and employers, potential employers and government departments all have to respect your diagnosis whether it is private or not. I have seen a few people suggest the NHS might not accept a private diagnosis. However, I'm not aware of the existence of any NHS services available for autistic adults that would make that necessary, or certainly not in the area where I live, so that makes no difference in my case. (If anyone does know of anything I'd be interested to hear about it).

Having said that, if you are lucky enough to get hold of someone on the NHS who is understanding about the issue, go for it!

Don't forget that you are entitled to be sent out of area for assessment if there is no clinic in your area with expertise, so it doesn't matter where you live in the UK. You might have to be pushy though. There is always PALS to complain if people aren't listening.

I have been waiting for my referral since speaking to my GP about 4 months ago. She had no problem at all referring me but then the health authority insisted i first be assesed by the local, non-specialist mental health centre before they would fork out for a proper expert assessment. I have just been given a date for that which is towards the end of Feb. It is taking an age but at least it is moving now.

Wow, the more experiences of people trying to get diagnosed in the UK I hear about the more lucky I feel. I had already seen a psychiatrist and been diagnosed with GAD and depression but then I learned about AS, read about people's experiences and realised that they were pretty much describing me. I made a list of all the reasons I believed I had AS then went to my GP. I took my mother with me and my aunt who has always worked with people with various problems including autism and we pretty much just told him outright that we thought I had AS. He asked why we thought that and we told him a bunch of the reasons. He then asked why I thought I would benefit from a diagnosis; I told him that it would help me understand myself and learn not to blame myself for some of the difficulties I have. It was clear he hadn't had a lot of adults coming to him with this query as he was initially unsure how to proceed. He then referred me to a different psychiatrist at the local centre which deals with secondary mental health care (the same place I saw the other psychiatrist) but this time it was the guy who specialises in learning difficulties ("learning difficulties" is one of the catch-all terms in the UK for various problems such as autism, Down's syndrome, ADHD and other such disparate conditions).

I got my first appointment about 4 months later. It turns out the psychiatrist is experienced in ASDs and was able to perform the diagnosis himself. EDIT: He was also a very nice guy and made me feel quite at ease; that actually worried me a bit in case the fact I wasn't totally freaking out would convince him that I wasn't autistic at all :p The first appointment lasted several hours and he asked various questions of both me and my mother. Like the GP one of the first things he asked was "why do you want a diagnosis?". It seems pretty clear that they wanted to ensure that I would actually benefit from this; it was clear that he felt sure that for some people at least receiving a diagnosis is not helpful. We then had another appointment of several hours a couple of months later (this was a a bit more than a month ago now, it seems like a LOT longer for some reason). The diagnostic tool he used was DISCO. At the end of the second appointment he told me that even before scoring the assessment it was clear to him that I met the criteria for Asperger's syndrome. About 4 weeks later I received his draft formal report which outlined things at length with the final conclusion that I meet the diagnostic criteria for AS by both the ICD-10 and Gilberg's criteria. He asked us to look it over and we have another appointment with him within the next week to discuss any amendments which need to be made.

The whole process was relatively painless and there was none of the fighting with the local health authority that I have heard about from other people. In fact somebody I know got diagnosed about a week later than me, she lives in the same health authority area as me (but at the opposite end of the area; it's a pretty big area) but in her case they had to apply for funding to pay to get her diagnosed by the autism team of the health authority in the adjacent area for some reason. Basically it appears that, to employ a much overused phrase in the UK, it is a postcode lottery.

I would advise that if you are experiencing considerable difficulties in e.g. looking after yourself (getting meals cooked, paying bills on time etc) that you should get a social worker involved. I spoke to a social worker about 6 weeks ago and she came and did an assessment and again produced a report about my difficulties. They will do this even if you don't yet have an autism diagnosis. I think if I would have had difficulties getting diagnosed that the report from the social worker would have been a powerful tool in convincing the health authority to cough up the money to get me diagnosed; I actually feel as if she very much has my back which is unusual and nice because most other government employees I have encountered have not been nice people.