NHS adult diagnosis - options?

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There were some telephone calls and a clinical assessment. My father, who lives abroad, was sent a questionnaire about my developmental history. The psychologist then phoned him for further information.

A very thorough report was sent to me within a week or so.

All in all, it was money well spent and I would do it again in a heartbeat.

I have to say my GP was very helpful and it looks like I should be greatful being in South Glos. Basically once I found a place for myself to go the GP gave me a forum to fill out on why I should get the funding. However the place will need to accept NHS funding before the NHS will actually allow you to apply. The National Autistic Society was a good place to look. My GP was all for helping me, but I also think it might have something to do with me wanting to know and the add bonus of having an ASD son, as well as being sucidal at the time. I think I wrote a couple of page essay. Even if you get to this part its still about a 2 year wait until your actually seen as you have to wait for the next financial year then for the place to actually have room to see you.

2000namesl8r - Don't feel like you can't post on here. Maybe you should try posting in the haven forum? Sounds like you're pretty down and I think that forum is for that purpose. You never know, someone might be able to help there.

DreamSofa - Thanks for the info. I have to agree, it does sound like money well spent! I don't think I can wait two years

The link for the National Autistic Society website is provided in my previous post, just click on the words "National Autistic Society" - sorry it wasn't clearer.

I did look into the ARC in Cambridge but it didn't look like I was in their catchment area. I am in the catchment area for the Lorna Wing centre in Bromley, but they don't take private patients and will only take NHS referrals from a consultant. Appointments with a psychiatrist are like gold dust in my area at the moment - they can't seem to retain staff and only the most seriously mentally ill can get near them. Plus I don't think my mum would be suitable for the diagnostic process as she frequently denies what she said two weeks ago, even when you still have it in writing, so I'm just not sure how useful she would be at remembering what happened 25-30 years ago, if I could even persuade her to support the idea in the first place...

If you go privately, it doesn't matter whether or not you are in their catchment area.

As far as your mother not cooperating, I don't know what to advise as autism is a developmental disorder and many diagnosticians want to interview someone who will know whether or not you hit your developmental milestones.

thanks lepug. it looks like it could be usefull. im possitive sometimes, i know my faults and cant fix them so what hope does that leave, i either except im not ment to be happy or just sink further and further down. im going thru a breakup so mayb this is a reason y im finding it harder of late.

The NAS was very helpful. I also got advice from someone off a forum who knows about the legislation from their difficulties. I could dig some of this up if anyone is interested. It helped put a case to my GP.

I was discharged from cognitive behavioural therapy as it was unethical to continue as not having an effect on my depression. She thought I may have aspergers and that was why the therapy wasn't working. (I have been since advised she should have still given me the treatment with aspergers adjustments as I am entitled)

I was referred by my GP to a psychiatrist with some experience of AS who couldn't make a decision and referred me to a specialist centre. I was then told there was no funding for me from my PCT. I then complained. This didn't achieve anything.

I got a disability advocate who started writing to my GP and various therapists etc. involved in my treatment. I don't think this really took off but in the process I put across a good case to my GP who applied on the basis of it would save money as I was being passed around services (depression/anxiety) taking up lots of time and not getting better. This funding was successful this time and I would say it took 9 months from being offered a referral but having no funding.

I am now diagnosed (June), and having 10 sessions of specialist counselling at the aspergers centre, and getting employment help and disclosing to employers. I am on anti-depressants and with the counselling and diagnosis starting to feel a lot better and move forward in some areas in my life where I have been stuck for years.

I did find that there was about a 6 month wait for private diagnosis at somewhere local that the lead NHS consultant ran. I was stubborn (aspie trait!) and refused to give up and pay lots of money out until I had exhausted NHS options, complaints etc. I made a point that it should be recorded that this is a really bad situation.

Yay for NAS! My experiences with them have been very positive.

Ask your GP to refer you for baseline psychiatric assessment.

This was an alternative strategy that my GP tried, and in fact was required for the adult Autism/AS diagnostic process.

The psychiatrist would have been happy to refer me to an Autism/AS diagnostic service on the NHS but in fact funding had come through another way in the meantime.

The baseline psychiatric assessment is required anyway to differentiate the simpler from the more complex cases. If there are significant other psychiatric conditions e.g. schizophrenia or bipolar then the diagnostic process for ASD is more complex, thus more expensive.

I would have thought that a baseline psychiatric assessment should be something most GPs should be able to refer patients for.

My feeling is that one should press to get an NHS diagnosis, since private ones are expensive and are not always accepted by GPs and the local Health Authority.

The problem, of course, is money - not only for the initial diagnosis but for any follow-up treatment and benefits which may be payable as a result of a positive diagnosis. If, as seems likely, more and more adults come looking for the diagnosis which wasn't available when they were young the resultant pressure on the NHS is going to be enormous.

I'm retired and when my GP said that my local area authority didn't budget for adult diagnosis of AS I pointed out that all I was asking for was the diagnosis itself and that I was highly unlikely to want therapy or claim a DLA allowance. As a result - and after considerable effort on her part - I got my diagnosis..

The Autism Act 2009 should set in train planning, provision and funding for the diagnosis and support of AS and ASD in adults.

It should but to date there's little sign that the train has left the station.

I recently participated in a strategy consultation workshop helping to shape the Autism/AS provision for Southampton Council (Unitary Authority) and NHS,. The timescale was a fairly rapid schedule for having contracts for provision in place (April 2012?). This did very clearly place diagnosis and provision for adults on equal terms with that for children.

I think this was being driven as a consequence of the Autism Act, and there seems to be similar activity for Hampshire ... Hampshire Autism Strategy

So I'm optimistic of things improving countrywide, but in any case I didn't experience a lack of funding for diagnosis merely administrative problems.

Last edited by barnabear on 13 Nov 2011, 3:59 am, edited 1 time in total.

I went privately after being told I may have to wait 2 years to have a formal diagnosis via the NHS.
I was diagnosed within the hour of my first consultation by a consultant clinical psychologist with 35 years experience. The fee was £140 [including outpatient fees to hospital].

It has to be said though that my life has been VERY MUCH text book Asperger's and I am just sad that it took nearly 46 years to achieve an identity.

Thank you all for your replies. Looks like it is a bit of a lottery! It is hard to believe there is so little help available. If I have any luck with the GP/NAS I will update.

Well, I went back to my GP and he reiterated that there simply were no services for adult autism. I said that I couldn't believe that that was true (not that he was lying, just that it was a bad situation). He said he would refer me to the Community Mental Health Nurse Team, which he has done, and I have an appointment for early next year. He said it's very unlikely that they would be able to help me get tested but it was the only option available (I think he just wanted to get rid of me really ). Will see what transpires...