How do I get a diagnosis?

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When I read up on aspergers two years ago I realised that both my son and I had it. I have had problems all my life, but I was researching special needs because I was watching history repeat itself with my son only worse, and his playgroup said there was something very different about him compared to the other children. He is more intense than I was but over the same sort of things (esp sensory stuff). So my GP said no, I really don't see how either of you are autistic, but as your playgroup have asked me to refer your son to the child development centre I will do that. Well one appointment at the CDC later and my son is diagnosed HFA. Further assessment by the autism advisory service and he was graded moderate, and then statemented for nursery (and school) by the LEA too.

So that leaves me, with a colourful history from the various psych departments I've been sent to over the years but still no diagnosis. They've guessed at bi-polar and personality disorders over the years, before my son was born, but nobody was ever convinced that they were the right diagnoses so they wouldn't ever label me on paper, just guess at stuff out loud and tell me to get a book on it or similar! I've been on various antidepressants since I was 10yrs old, and I'm 25yrs old now and currently on prozac. Still no label besides 'depression' or 'sounds like you've had a stressful life', my GP says I don't have aspergers because I make good eye contact. But remember she said the same about my son and was very wrong there though.

I want a referral to someone who can diagnose aspergers in adults, there must be a place like the CDC for adults? My GP has said that she will refer me for a second opinion if I can find out myself where that referral should go to. Great...

I want a diagnosis because I have a lot of problems even as an adult that could be made easier by being able to say that I have aspergers. Things like not coping in hospital situations and not managing to deal with office politics. People usually think I'm being ridiculous/hysterical/manipulative/rude/deliberately stupid and I think I sort of get why but that doesn't make it tear me up inside any less. I want people to know that I do care a lot when they have problems but that I can only help them in practical ways, I can't have sympathetic conversations with them because I will ALWAYS just mess it up and make them even more upset! I want my friends with autistic kids to understand that my son is just as autistic as theirs are, it's just that my understanding is what is helping him, and that I'm not talking rubbish when I say about coping techniques we use which they think are stupid! Same for school, they said I was being silly when I said I wasn't surprised he was hitting out when they put the tidy up music on - it was a negative raucous which was sudden and pounding in our ears out of nowhere. They reluctantly changed it thinking I was being silly, and guess what? He doesn't hit out at tidy up time anymore - he tidies up happily!! I want to be taken seriously as a person who is just a bit different to most - not treated like a muppet who over-reacts all the time.

Going on and on now sorry. Bottom line is HOW do I see an asperger's specialist to make the decision about whether or not I have aspergers too?

Another route to get a diagnosis can be to sign up for a research program. They will keep information about you for various studies, but it's completely anonymous. They will share your diagnosis with you and give you documentation to use. There are some good studies going on in the UK that you might be able to get in on.

Your GP obviously doesn't know enough about ASDs (Autism Spectrum Disorders) to make any kind of assessement. What you need is a psychologist who is trained in ASDs.

My own history is somewhat similar, except all I have that I know of is ADHD. It's always been a huge problem. My IQ tests and other academic aptitude tests always indicated I should be able to suceed in school and should, like my parents, be able to do advanced studies with ease. I could never focus the way I wanted. I'd focus on some things but forget to focus on others, and just couldn't control it. I'd be brilliant at what I focused on, but would then fail to complete assignments etc. Everybody was always telling me how frustrating it was for them to have to deal with me, how they could see so much potential, but couldn't figure out how to get me to do anything about it. Well, I've got news for all of them, it was a whole lot more frustrating for me than for any of them. My parents really did try, I can't fault them. My mother faithfully drove me to the best psychiatrist, week after week, and never got answers. They had me in for testing, and then the school had me in for testing. No reasonable answer was ever discovered.

Fast forward to recent years. I'm in my 40s getting by but frustrated at how boring the jobs I can handle are. I take my kids in for assessement for ASD stuff, only to find out they all have ADHD. As the Psychiatrist is asking me questions about their behavior etc to dx and treat them for it, I stopped in the middle of it and said "Dr. E., you mean to tell me all that stuff isn't normal? You mean there are pills and stuff for THAT? We need to talk about ME!" He scheduled me in and was able to diagnose and treat me. Now I take Concerta for it, my life is so much better. First, I understand. Second, all those frustrated people who love me now understand. My mom calls me from time to time just to hear me tell her I'm taking my meds and doing well. It took us forty something years to figure it out.

Your only 25. Figure this out now and you've got almost your whole life to enjoy knowing what's going on with you and to figure out how to make the most of who you are instead of being frustrated about what you can't change.

If you got on reasonably well with the person or team who diagnosed your son, then they would be one possible source of a recommendation. The various charities may all have lists of experts who are available, even if they are not in a position to recommend one over another. The centres of excellence may provide some useful information over the phone and recommend on to someone local.

And there might be people on this forum from your area who could name people.

I contacted an Autistic Services group here in Buffalo. They sent me a list of psychiatrists, testing centers, and different organistations that could help me.

Today I called the psychiatrist and made an apointment for this Thursday June 17 to see him and get tested or he can refer me to someone to get tested. You have to go out and make it happen, I always made it tough for myself but it was easy to meet with the psychiatrist. Good luck.

You can contact the local autism service groups in the area that you live.

Thank you for your replies. I am going to try the people who diagnosed my son tomorrow. I sat on this for a long time but I do need an answer, one way or the other, to move on. This just obsesses me pointlessly. I am so tired and I have to be up first thing for my son yet I am sat here feeling sick at 1am because I'm so worried about my GP being upset with me for suggesting that she is wrong about me. See she just thinks I'm reacting badly to a hard life, but that doesn't explain so much stuff, especially the sensory problems I have and why I get so upset over things that don't bother everyone else (except my son!).

Kiley your reply was so helpful thanks. I too realised things about myself weren't normal when I realised what was up with my son! I knew he had some problems, but some things I thought weren't normal actually were and vice versa because of my own issues!

I go to a local autism support group regarding my son, and they think I am aspergers but just said to contact the NAS. Well I did, and the NAS insists my GP should know who to refer me to. But she doesn't! She said she'll refer me if I really want it but she doesn't know to who, nobody does. I found the name of a local research place but they said I'm in the wrong county to see them and there is no similar place in my own county. My son has services from the autism advisory service and they have made comments from time to time about us being 'two peas in a pod' and even said I should be really careful how I talk to my son in public because people who don't know us will think I really mean our private jokes. Well, actually when I call my son a nutter I mean it as it happens, it's not my fault other people think this is derrogatory!! I love that he's a nutter, life would be boring if he just talked about this ben10 instead of creating his zany machines out of household items. Everyone who works with him says I have to learn to stop being so reactionary because of how badly it is making my son the same, but none of them will actually help me to change.

I digress, I am in the UK by the way.

I know exactly how you feel, about feeling really bad because of the trouble you cause others. But that is the GP's job, and the GP might be very relieved if you do get referred and assessed - besides which, that will be one more GP with an understanding of adult Asperger's and a specialist's name to refer people to.

It sounds to me like all that you have to do is find the name and the GP will not be upset at all in making the referral. Good luck with everything.