A Route to Diagnosis - an experience

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Thanks. I'm in Highland region BTW, three hours from Inverness (four by train). So I should ask the person I see for an address to write to? That could be awkward. Though I agree that your advice sound like the best plan.

On the last consultation I asked the interviewer if I could have something in writing. All he said was that I could give people his name if they wanted to discuss it. I thanked him, but my opinion of health professionals took another nose dive.

Hi Niall

I have found this thread really interesting, especially as you keep updating, I am in the South of England and have also been trying to get an NHS diagnosis without much luck

Back in February I went to the GP... it took me months to find the courage to go, he told me he would make a referral, but it would probably be rejected as there is limited funding for adult diagnosis (my youngest was referred age 4 he will be 7 next month and he is still not "officially" diagnosed) About 3 weeks ago while at asthma clinic I asked the doctor if he could check up on the status of my referral, he could find no evidence of it. The GP could only assume that it had been rejected and asked me to write a letter to appeal and he would back my case, he has promised to get me an answer one way or another this time. I have no idea how long I will be waiting.

In 11 days I am going to get a private diagnosis done, I still want the NHS one too as I have been warned the private one may not be recognised in some cases

It's disappointing that you haven't gotten any further with your request, it seems as though they have done a few tests with you so feel like something is being done when its really nothing. I hope it changes for you soon, keep us posted

And they wonder why we self diagnose.

It went really well. There is now a psychologist trained in the Highlands to diagnose aspergers and I should see her in about five months (February?). Last year the mental health guy wouldn't do anything because he is not trained, there was nobody trained within hundreds of miles, and he didn't want the inconvenience of sending me down south: He gets paid the same regardless of whether he helps people or not - that's the beauty of psychology. What a career! It's almost as good as being a CEO of a major bank (no results are expected), except the pay is slightly less and people don't hate you.

Anyway, now that it's easier he was happy to refer me. He gave his opinion that I do have aspergers, but it is merely his opinion as this isn't his specialism. So things are looking up!

Thanks for asking.

Hey folks.

Well, I finally had my first assessment appointment last week. It lasted just under 2 hours and was heavy going. We discussed a lot of stuff going back to childhood.

I have another appointment in ten days, so there's nothing conclusive.

The psych wants to talk to my friends (I don't have a lot of those) and family (I told her I'd try to find my mum's address) as well, and I've got another test to complete.

When did I first post on this thread? March? I've heard it taking longer, I suppose.

I should have updated this a while ago.

Headline. I have my formal diagnosis.

I've had two (well, three, but I'll come to that) appointments since my last post.

The first of these was mostly taken up validating an 80-point questionnaire clearly relating to ASD diagnosis. This would have been late November. Since then, I've had a really crap time personally, and the psych hasn't helped. At the end of that appointment the psych told me she'd arrange another appointment and email me the time. I heard nada, eventually emailed her, and was told she had an appointment arranged for me on the 20th December.

I turned up, went throuh the rigmarole of again explaining to the receptionist cretin that there is no "child's name" and she's assessing me for AS.

The psych didn't show. She later told me she'd got her dates mixed up. To be fair, I've done this, but the result was a meltdown. The holiday period was a nightmare. It was always going to be a nightmare, but feeling abandoned by the health services (my psych retired in late November into the bargain) didn't help.

I had my final appointment this morning.

The result is that I don't tick all the boxes, but I do tick enough of the boxes for a diagnosis of AS. I don't expect a prize, but it formally explains a lot of data.

Next question: where now?

There is someone who works for the local council who provides services for people with ASDs, and the psych is going to send me her email address, but those services don't seem too promising.

What it will help with is in assisting a psych to untangle some of the other problems. My depressive symptoms may or may not be related, but the DX may inform therapy. My anger issues may well be meltdowns. It fits the data, strongly.

In the medium term I'm not sure how it informs me. It's almost certainly been a factor in my inability to obtain work as well as relationship problems. Part of me wants to read up and make the best of it - go out and try to interact with the humans. Part of me - the part that's had a rough few weeks - wants to hide in my den. Part of me is thinking about abandoning human society and taking up permaculture somewhere. Society doesn't seem to want me, and the feeling is increasingly mutual. I'm thinking about it.

It's been two years now, more or less, and I think it might be useful to post an update.

The AS diagnosis has explained a great deal, and I now have a much better understanding of why I ended up where I am now, in terms of relationships, jobs and emotionally.

What it hasn't changed is any means by which I might change any of that. If anything, I face growing social withdrawal and worsening social anxiety.

I had thought that it might help me to access services. What has actually happened is that I'm being knocked around between services.

The trouble stems from the mental health problem. I do no think that the AS needs "treatment", although I do think the NTs need to be more accepting of difference. The mental health problem is another matter.

I have now had a psychologist and an art therapist give up on me, largely because of the "underlying Asperger syndrome". It is true that building up a client-therapist relationship is difficult, not least due to my resistance to authority. There is now a new psychiatrist at the local hospital, who met me for 15 minutes and was ready to have me on mood stabilisers (not for the AS) - drugs that I have a lot of doubts about the efficacy and safety of.

Services for AS in the area are extremely limited. They would be more substantial if I lived in the Lothians but, here, they are almost non-existent.

The takeaway message is that the diagnosis can be useful in accessing essential services but, if there are other issues, such as mental illness (not a few of us wind up with depression and/or social anxiety, for what I regard as obvious reasons), you can find yourself with access to little or nothing because the NTs running the show out there regard you as somebody else's problem.

I'm not saying that anyone considering a diagnosis should not get one, especially if there are no complicating factors, but I would advise caution.

I agree with you to a point--having the diagnosis for me has served as a jumping-off place for understanding myself better, but it hasn't significantly improved my relationships with other people, nor has it necessarily made them understand me more. Despite knowing myself better, I find sometimes that I wallow in my diagnosis--I allow it to become me, if that makes sense.

Can't you stop defining as having a mental health problem, now that you have shown in practice no part of the mental system wants to deal with it as one? You clearly don't want the treatment they offer either, which is good.

Anxiety is reasonably classed as caused by AS, can't you now simply define it as part of the AS and its associated problems? What do the Viewfield Terrace folks say about that?