Getting an AS diagnosis as an adult

[Sarah-Jane]

I think I might have AS and am about to approach my GP (again) to ask for a referral for a proper assessment.

 

I've had problems since childhood; I was under CAMHS, who diagnosed me with school phobia, and I was later passed on to adult services. I've seen numerous psychiatrists, both as an adult and a child, but they all seemed to be a waste of time and tried to fob me off with anti-depressants.

 

It's important to me to have a proper assessment as I've had enough of being passed from one person to another without ever getting to the bottom of what's actually wrong with me - they can't possibly stick with my original diagnosis of school phobia when I'm now 25!

 

Does anyone with personal experience of seeking a diagnosis of AS as an adult have any advice about what to say to my GP?

 

Would going private be any better than trying to be seen on the NHS? And any idea how much it might cost to go private?

 

Thanks,

Sarah-Jane

 

Edit: Think I might have posted this in the wrong place but can't see a way to move it.

Edited May 8, 2007 by Sarah-Jane

[JenRose]

hi sarah-jane.

i have AS.

I was dx,d 2 years ago, after finding out that DS was AS and realising that i had the same symptoms as him i approached my GP.

I wrote everything down why i felt i had it, she tried to fob me off saying that AS people were "train spotters"

i persisted and she referred me to a psychiatrist who has an interest in ASD.

My DH wrote him a letter all about me, what i am like to live with, how i live my life etc.

he spent about an hour and a half with me and he said yes in his opinion i did have AS, albeit mildly.

It was the best news i had had in ages!!!!

my dx has opened doors for me, i have a named key worker, i have weekly therapy, people are more accepting as well (i think)

you can go down the NHS or you can go private.

If you want to go private the NAS can give you the details of whoever is in your area.

 

hope this helps

[Mumble]

Hi Sarah-Jane,

 

I'm 27 (just!) and was diagnosed with AS (+ ...) in February this year. It was a long and difficult process getting a diagnosis including the 'professionals' view that I couldn't possibly have AS because I'm too intelligent, I'm at university, I live semi-independently, etc etc. However, I'm glad I went through the process because it puts a name and a reason to knowing all through my life that I was different, and that despite the act I was putting on, I wasn't coping as an adult in the NT world. I'm still not coping, but I least I don't (always) blame myself now . . .

 

There are various threads on getting a diagnosis as an adult. Look in 'beyond adolescence' and also search for this topic.

 

There are lots of us here who have been through / are going through the process, so if you have questions, I'm sure someone can answer them.

 

When I went to my GP, I took a list of things that are causing me problems, using the info on the NAS website to help - I don't know what you're like in conversation but it might be useful to write something or take someone with you if you can for support or to help you put across what you want to say.

 

Hope it goes ok,

 

Mumble.

[Flora]

People have varying degrees of success with getting referred and who assess them. I could never find anyone who would assess without input from a parent, or another person who knew you when you were growing up.

 

Some people have gone down the private assessment route... I was lucky enough to have a friend who's husband is a consultant psych and he stepped in. But if you want a dx in order to access services I think you'd need to see an NHS consultant either for or after dx to make it official. I did take my information to the GP who was about to retire so has passed my file over to someone else and I need to chase that up, but to be honest I'm not bothered about an NHS dx as I'm not interested in accessing any services at present.

 

I'm sure there'll be others along to share more enlightening advice with you!

 

Flo'

[Tally]

Hi Sarah-Jane,

 

I just got my official diagnosis of Asperger's last Friday.

 

I was told that I would not be able to access an assessment on the NHS, so I went privately. I was told it could cost between �300 and �1000. Although I saw a very highly respected professional, I paid somewhere in the middle of that. Send me a PM if you want to know more about that, because I don't think we're supposed to give out that kind of information on the board.

 

It would be good to take some brief information about AS to your GP. Bear in mind that they are unlikely to read a long document. It might be useful if you can take a list of the symptoms, and tick off the ones you have - then they can see that you fit the profile enough to be worth investigating.

[Noetic]

The National Autistic Society has a bit of info on this: http://www.nas.org.uk/nas/jsp/polopoly.jsp...045&a=3341q

[Sarah-Jane]

Thanks for the replies so far.

 

I'd had a look at the NAS website, particularly the bit about getting a diagnosis. I'm looking for personal experiences really, i.e. what you did to get a referral. I have now contacted the NAS about the possibility of going private and asked whether there are any specialists in my area.

 

I'd started to take the advice given on the NAS website, writing down some of the problems I have (I would've had to have written it down anyway, my GP is used to me saying a few words then handing him a bit of paper). It looks nothing written down, but I don't want to write pages and pages that won't get read properly. I started writing specific examples of things that have happened that 'fit' with AS traits too, but they sounded stupid, and made me sound stupid, so I stopped.

 

I already have physical disabilities (hemiplegia and scoliosis) so I think it might be difficult to convince my doctor that my problems aren't (indirectly) related to those. When I mentioned AS before, I was told that if I had it they would've picked it up when I was a child. So I'm expecting it to be difficult to get a referral (my stubbornness might actually be an advantage here ).

 

Sarah-Jane

[bid]

Hi S-J,

 

If you look in the 'Beyond Adolescent' section of the forum there are lots of personal experiences about going for an adult dx.

 

Bid

[bikergal]

I was told the same as Tally re assessment on the NHS so I too went for a private assessment . I have only received my diagnostic report today and I have Asperger's. Can't really add anything else to the good advice you've already been given. <'>

[Tally]

I had to be seen by the mental health team before I was allowed to be referred by my GP. I had to see a CPN - Community Psychiatric Nurse. The first one seemed to take me seriously and I saw a psychologist. Although she was not qualified to diagnose AS, she did confirm my thoughts that I do have a lot of AS traits. Initially, this was enough for me to feel confident about the fact that I have AS. My CPN then started trying to refer me to all kinds of inappropriate group therapy for stress, mood swings, all sorts, and I couldn't understand why. Then a few months later, I saw that my GP's notes from the meeting with the psychologist say, "good eye contact, not Asperger's," which is very bizarre considering I do not make eye contact. Which would explain why the group therapy - they wanted to force me to mix with people, but mixing does not lead to friendships, as I have already found at school and work. Do they not listen?

 

By this point I'd caved in and agreed to group therapy, which I'd stopped attending after 5 completely wasted sessions, and was discharged by my CPN. The irritating thing is that someone who was genuinely suffering from mental distress could have benefitted from a place in the group that was wasted on me. I was really upset by how they had treated me, and was afraid to go back to them about it, but I eventually did. My GP referred me to a different CPN (I requested a different one - you are allowed to do this, and you don't have to explain it all, I just said I didn't feel entirely comfortable with him). I was wary after last time, but she did seem to take me seriously, more so that the last CPN. She agreed that it would be worthwhile me seeking assessment for AS, but acknowledged that it would not be likely on the NHS. She also gave me a copy of her notes from our 2 sessions, which had this in writing. Well, I don't know, she may have secret notes with lies about me as well, but it felt like she was being open and honest with me about her opinions.

 

Because I was not being kept on as a patient by the mental health team, my GP had to do the referral, which, after much nagging, he did. It helped that I was able to have the CPN's opinion, in writing, to wave in his face.

[Millymoo]

Hi

 

My husband was diagnosed by a Psycologist at CLASS in Cambridge. I'ts free at the moment, as long as you have a GP referral. We thought we'd have to pay �1000, but apparently not! Here's a link to their site

 

http://www.autismresearchcentre.com/clinical/class.asp

 

Hope it helps!

 

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