*Best Places in UK for Adult Diagnosis?*

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ouinon
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23 Oct 2014, 3:17 am

Looking for advice/info/help here! :)

I'm planning to move back to UK from France next summer, and one of my main reasons for doing so is to get an official diagnosis, ( probably Aspergers/Autism Spectrum or PDD NOS and/or ADHD ), and am trying to work out where would be best to live with that in mind. I realise that Cohen is in Cambridge, and that Sunderland has the nutrition and AS research institute but am hoping for pointers to elsewhere too. Thank you very much. :) :D

I would really like to hear from anyone who has succeeded in getting an adult dx, or almost as importantly hasn't, in the UK, with info on which Health Authority/Council it was with, because I have heard that they vary greatly in how sympathetic or not they are to people trying to get a diagnosis as adults, and I really do not want to move to somewhere only to find that it is one the districts most hostile/indifferent to, and/or ignorant about, adult AS.

I haven't even tried here in France, because the attitude here seems to be that adults Auties/Aspies don't exist, and that young ones should be medicated and/or shut up in institutions etc. And I don't think my spoken French is up to conveying the nuances and complexity of my experience either.

PS. And/or if anyone knows of a previous thread on this topic could you please post a link to it. :) Thank you! ( I searched and looked at some older pages on adult dx but couldn't find one with specific recommendations ).



Last edited by ouinon on 23 Oct 2014, 7:58 am, edited 4 times in total.

SteelMaiden
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23 Oct 2014, 3:34 am

I had a diagnosis in Croydon but it was private and my dad had to pay £350 for it. However as far as I know there are many places in London and surrounding (I have lived in Greater London for my whole life). However I do not know about the quality of the places.

I was originally diagnosed Asperger's but that was because my abusive mum wanted me to be as "normal" as possible and really f***ed up the whole assessment (she said she would deform me for life if I "acted weird" in the assessment).

My psychiatrist and neurologist both agreed that High-Functioning Autism is a better descriptor for me, but they recognise that I am not really that High-Functioning and that I am nearer moderate-functioning autism than HFA, but due to my very high IQ they settled on HFA (even though I need support workers to do things like even go to the shops).

Briefly, there are a lot of places for diagnosis, but some have long waiting lists.


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ouinon
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23 Oct 2014, 3:45 am

Thank you v much, Steel Maiden. :)

I just found an ancient thread with two pointers, one to Surrey and Borders Health Authority, and the other to the London area in general, which would fit with your experience. :) Unfortunately I probably won't be heading for London, or Surrey, too expensive. :(

I found this WP thread of general advice and what looks like some useful *links* for getting an adult dx in general http://www.wrongplanet.net/postt227311.html *but* still no actual/precise details about good places to live for the process of referrals etc.
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ouinon
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23 Oct 2014, 6:53 am

I can't really afford to move to London or its suburbs, so was wondering if there were any other areas where the referral and diagnostic process is fairly sympathetic and efficient.

It does look as if funding/budgetary considerations play a pretty important role in whether a Health Authority bothers with adult AS diagnosis, even where a District *wants* to do the right thing, so as usual the richer Tory boroughs get the better services.

Has anyone had a particularly good experience or an especially grim experience of the dx referrals and diagnosis process? Which Health Authority was it with? Please post, if only to say "X Health Authority: Bad" or "Y Health Authority: Good". :)

Thank you very much. I tried to get back to the UK to do this in 2009, but with my son, still small then, and failed miserably. This time I'll be on my own. I'm trying to ***plan*** it carefully. :lol
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Lonehiker
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23 Oct 2014, 8:25 am

Hi Ouinon,

I got diagnosed just over 2 years ago. I first went to a NHS mental health center and got referred to Maudsley in london. I was happy with the whole process although the waiting list for maudsley was long (6 months).



Simplegirlviv
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23 Oct 2014, 8:57 am

I have been referred to an ADHD clinic in Wakefield. still waiting to get a diagnosis


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23 Oct 2014, 9:15 am

I'm part way through an assessment with norfolk and suffolk. It took several years of persistence with the mental health team to get this far. I believe though that you can self refer to them, or go through a GP. I couldn't really say how good or bad they are, but they seem fairly thorough.

You can also get referred to Cambridge from outside the area, through a GP. http://docs.autismresearchcentre.com/CL ... pt2013.pdf



AspieUtah
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23 Oct 2014, 9:43 am

You Brits are so lucky! Occasionally, I hear of an adult disagnosis in the United States which went well, but, too often, I hear about the difficulties. It also helps that the United Kingdom still observes the ICD-10 instead of the DSM-5


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23 Oct 2014, 10:58 am

Got my diagnosis at Dunstable, which is in Bedfordshire. The referral was made by the psychiatrist at Leighton Buzzard CMHT.

http://www.sept.nhs.uk/Mental-Health/Ad ... rvice.aspx

It doesn't accept self-referrals, so you'll need to find a GP or someone else who'll refer you. The waiting times are long. It takes a while (several weeks) just to get a preliminary assessment. I had my preliminary assessment in March and the final assessment in July. The waiting times might have speeded up since then, but somehow I wouldn't bet on it.

According to the guy who did my preliminary assessment, about half of the people who get referred don't get a diagnosis of autism. That obviously leaves half who do. Basically 50/50 chance. I have no idea how this compares with other services in the UK: I would actually be interested to know. Also, the service I got my diagnosis from has done away with the Asperger's diagnosis. They use the term Autism Spectrum Disorder, in line with the DSM-5.



jms100
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23 Oct 2014, 6:37 pm

Hi,

I recently 15th October got DX with Aspergers in Bristol under the Bristol Autism Specturm Service, They run under GP referal and wait is roughly 10months, I got refered to them through GP after a round of counselling and it was mentioned :)

So yea Bristol/South Gloucestershire are great and they for at least 2 more years will be using IDM-10 :) The lady physcologist told me that :)

Diagnoses takes 2 sessions about an hour each and you are seen by 2 Physcologists both times, They may also need family members but didn't in my case :)

Hope this helps



ouinon
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24 Oct 2014, 7:03 am

Thank you very much for all the replies. Really appreciate it. :)

Looks as if the worst that can happen is a long waiting list and/or huge waits between parts of the assessment procedure? Which I can see could be really really frustrating and tiring and inconvenient. But no total disaster stories so far.

I suppose it's possible that some people are not getting diagnosed because of budgets or whatever, who *should* be, which *would* be a disaster?

What about Birmingham? anyone have exp there? Or the south coast ( my aged p's live there )?

Thanks again! :)
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The_Walrus
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24 Oct 2014, 7:07 am

From memory, Sheffield is very good.



greenfivenine
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24 Oct 2014, 3:25 pm

The South West Yorkshire Partnership (NHS) runs an "out of area ADHD and ASD service", where they seem to do adult assessments and you can apparently be referred by your GP from an area outside the trust's catchment (you can find it easily online, I can't post a link as I'm new to this forum).

However, I am living in an area bordering this trust's area and the GP would not refer me there, he said something about "er... I don't think I can refer you there... I think there is a problem with funding or something," and instead he referred me to a local psychological assessment place which does not specialise in adults/ASD/adults with ASD so I'm not so confident in their assessing abilities. Still waiting for this, but I only went to the GP a month ago.

So South West Yorkshire Partnership: potentially good but I am not certain.



NiceCupOfTea
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24 Oct 2014, 4:08 pm

ouinon wrote:
Thank you very much for all the replies. Really appreciate it. :)

Looks as if the worst that can happen is a long waiting list and/or huge waits between parts of the assessment procedure? Which I can see could be really really frustrating and tiring and inconvenient. But no total disaster stories so far.

I suppose it's possible that some people are not getting diagnosed because of budgets or whatever, who *should* be, which *would* be a disaster?

What about Birmingham? anyone have exp there? Or the south coast ( my aged p's live there )?

Thanks again! :)
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You can bypass the long waiting times if you get a private referral instead of an NHS one. Obviously if you'd have to pay if you went private. I'm not sure how much most private assessments cost, but a place I looked at in Milton Keynes charged £995 for a standard assessment (and £2100 for an enhanced one!). Not cheap.

It's more likely that people would be refused a referral for budget reasons than a diagnosis. The assessment is the expensive part, regardless of whether it's a "yes" or "no" at the end. To this end, since it's a GP who will most likely be making the referral, you may want to find a sympathetic GP first of all. I don't know if you can have a talk with a GP before registering, but if you can, then I would do that - tell them what you're after and see what they say. Saves wasting time with registering with a GP surgery, only to be denied a referral because of funding reasons, being just outside the catchment area, or whatever.

Would one of your aged parents be able to make it to the assessment? My mum came with me to my final one. She wasn't just a bystander, the psychiatrist quizzed her quite closely, especially about my early childhood. I reckon that clinched the diagnosis for me, tbh.



CocoRock
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26 Oct 2014, 6:39 pm

I found it impossible to get an assessment on the NHS. I tried for three years. I saved up to pay privately at the Hoffmann Foundation for Autism in London. They were excellent.



ouinon
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27 Oct 2014, 4:08 am

Thank you very much The_Walrus and greenfivenine for those recommendations. I quite like the sound of Sheffield, and also the north, near Sunderland because that's where the Autism and Nutrition Research project is, though I'm rather afraid of how cold it's likely to be. Currently "studying" Birmingham, but am aware that with all the cuts it's suffered in recent years it's not likely to have much money for AS or ADHD assessments!

NiceCupOfTea and CocoRock, I won't have any money for going private, certainly not at those prices. O_O :( ... Arrgh. Three years of trying and getting nowhere! :( Awful.

Thanks, NiceCup for the suggestion about GP's. :)

About having a parent at the assessment; my mother might be able to make it, if I don't leave it too long.

Thank you again for posting. :D
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