Diagnosis experience - one year later and back to square one

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I read up on AS on the net about 16 months ago, after I was discussing with a friend about another online friend who was AS. I looked up AS and I seemed to fit a lot of the diagnostic criteria. I immediately thought "so this is what's wrong with me". I'm 35 years old.

I e-mailed the National Autistic Society who said I should talk to my GP, but to bring along some information on AS and the results of an AS online test. I "passed" the test as expected, and visited my GP armed with some carefully chosen information about AS. She said she'd look into it, not knowing much/anything about AS. Soon after, she told me that I was on a waiting list to see a specialist, but it could take a year or more. Fair enough, I was pleased so far.

Time passed, and I heard nothing more. Fast forward 16 months. I visited my GP about an unrelated issue, and she told me she had no word back about the AS, and I said likewise. She said she'd follow up. A few weeks later I went back to see her, and she had some news. Somehow it seemed the word hadn't filtered back from the specialist to my GP.

Anyway, the news wasn't good. The doctor said that the specialist didn't want to see me. He only was interested in people who had low IQs and as I had a good job in IT and was (obviously) managing in the world, he wasn't interested. Then I said, hold on, the point about AS is that people normally do have good jobs - it's my lack of friends and a social life that is the main issue. She thought I might just be shy. But she also said that as it's obviously something that I am not going to let go of, that I could try finding a specialist privately (on my own behalf). To be fair, she was nice about it, and said to be careful when looking for a specialist because there are people out there who will take advantage.

So, I just feel like I'm further back than when I started. I think in the new year I will make enquiries to see if I can find a good specialist. Apart from "peace of mind", I'm not exactly sure what good a diagnosis would bring anyway. I doubt at this stage there is much anyone can do. But I'd just like to know, as at least it would put the last 30 years into perspective for me.

Sorry to hear about your dilemma. Unfortunately, you're not alone in your "fight" to receive a diagnosis. There are a lot of misperceptions about AS out in the general medical community. It's really difficult to find someone qualified to diagnosis it properly (especially in adults).

WP is behind you and don't give up trying to get your diagnosis. Honestly, as long as you feel the criteria fits you, that's good enough for some people. I'd like an official diagnosis but have put it on the back burner for now until I do more research and find a qualified person to work with.

Hi Avalon

Sorry to hear about your experience. I had exactly the same but worse in that my GP was scathing. Most medical people have no idea at all.

Not sure how I can really help, except to ask why you want an assessment? Bear in mind that the vast majority of psychologists and psychiatrists in the UK will know less than you about AS. I mean that very seriously and factually.

Also, bear in mind that an official assessment (ok, diagnosis, if you must!) has to come from a clinical psychologist/psychiatrist approved by the NHS. Any other source of dx will not be accepted by the NHS. (This is info from the NAS, BTW.) In practice this means seeing someone within the NHS.

I went privately to an eminent psychologist working as a consultant to the education authority, which credential was good enough for me. It was very expensive. The NHS has officially ignored the assessment although tacitly other agencies accept the assessment and factor that into any service provision. The point about the NHS stamp of approval is about ££££ - if they refuse you a diagnosis, then they do not have to give you any services. To that end, they do not accept 'private' diagnoses.

It's a really fuzzy, grey area. I think the NHS is just trying to stem the inevitable tide. So they leave you to get on with it - like many other conditions these days. (Don't forget that the NHS is bankrupt and barely able to run emergency and headline target services now).

I'm not certain an official NHS dx would have done anything for me. I knew anyway once I'd done some research and reading a lot of academic papers - I was prepared for the private specialist's assessment. As an adult, I think you know if you're an Aspie once you've done your research.

So I come back to my original question - why do you want a dx? May I just say that it might be helpful not to look at it as 'having something wrong' with you, but rather to look at yourself as different, more interesting than the norm, with your own needs and sensitivities. Maybe it's a question of concentrating on what you need to do for yourself to make your life as comfortable as possible? After all, no NHS attention is going to give you that...

Does that make sense? (PM me for a chat if you want)

After years of therapy with other therapists, I have found someone who "specializes" in AS--regardless of IQ (mine is high). It has helped a LOT.

So, what I am saying is: Don't give up. The good thing about a diagnosis is that it CAN help you get specific kinds of assistance/advice. It took me a while to find the right therapist, who really understood "my world."

Thanks for all the replies! I knew getting a diagnosis wasn't going to be easy, but I did think I'd have gotten as far as seeing a specialist. But then it's more down to whether the specialist has time and wants to see you (unless you're paying I guess).

I had done some research, enough to back up what I planned to tell the doctor - and rightly enough, I didn't get laughed out of the surgery. I bought some documents I'd printed off the net and highlighted the parts I thought applied to me. Where I guess I didn't do my homework was to find out the likelihood of getting seen on the NHS. I did think it was more a matter of waiting and I'd be seen eventually, even if it did take a year or two.

I suppose I would like to know one way or the other. Originally I thought I could get some kind of support, or deal with it myself in some way. After all, an eventual diagnosis wouldn't change the person I am, beyond giving me some kind of peace of mind. I'm not sure exactly what anyone can do to make my life any different.

Thanks for the info, Lupin. I didn't know that. It seems unfair that the NHS offically ignore the assessment of a private professional. I guess someone in my position, who is capable of looking after and supporting themselves is (rightly) not a priority.

Why do I want a DX? Maybe I thought if it was confirmed, I could get some kind of further advice, help or support in dealing with my problems. But I guess any kind of social skills training would have been useful 20 years ago. What's done is done now.

I would agree that, as you say Lupin, it may largely have something to do with making myself feel better. Maybe in some way try to remove the responsibility/blame that it's not my "fault" my life has turned out the way it has. I guess ultimately I was looking for some professional advice on how to accept my limitations and what I can do to make the best of life.

KingdomOfRats, I do intend to look into the options of seeing someone privately. I think if that leads to a dead end, I'll just leave it for now. Ironically the person I was lined up to see was 5 minutes walk from my house! I'm sure there are lower functioning people who need the help and support more than I do, so it's understandable they would take priority.

I feel like stuff I could have done with help with in the past. i.e. bullying at school, difficulty getting a job despite being qualified, is all in the past. Really the main area of life where I could do with some help is with social interaction. I have a very small number of friends, and even then, I have a few issues with those friendships. I spend too much time on my own. I like it sometimes, but other times I wish I had some company. But I know I'm better off than some AS people.

SapphoWoman. Thanks for your encouragement. I'm not going to give up, for a while yet. I guess the comfort of having someone who understands you does make a difference. Maybe that's why I think a diagnosis is worthwhile. I know there are places online (like here) to for advice and help.

However, Zendell also has wise advice. An AS diagnosis may be difficult to get. Much as it would be some kind of comfort to have something in writing, I'm in no way putting my life on hold, or in any way worrying about it. I'll just see what happens and get on with life

Avalon,

Yeah, the narrow interest is our gateway to "better" things if one can handle being in the presence of people (there's always people); they haven't done any long term studies, so they don't know if people with Asperger's end up "better" than what the [younger] majority who are diagnosed with it now are.

I'm assuming that people with AS will improve as they get older (midlife on), and they may then work in "good" jobs, but this is pure speculation.

Must be frustrating. I tried to get a diagnosis recently, but he told me "definitely not Asperger's" because (according to him, and I was quite offended by this O._.o) Aspies are not generally very bright, and I have a college education which is rare for aspies (despite the fact that my diploma is as a computer systems technician, and I've been obsessed with computers since about age 4). I don't think he actually understood AS, but I'm at a dead end either way XD Oh well.