The road to diagnosis (UK)

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So on Thursday I finally have an appointment with my GP to discuss the possibility of my being on the autistic spectrum (I am almost certain of it), and hoping for a referral for assessment.

I am getting in a right mess over it.
I have no idea what to say or how to say it.
I just want to cancel the appointment so I don’t have to talk.

I have a list of stuff I want to tell my GP in a previous thread (<- that's a link, click on it to read)… but there is so much there I don’t see how I can cover it all, even if I can get any words out of my mouth. Which is not guaranteed. And it’s not like she can read it all while I’m there so then I’d have to go back for a second appointment which would also be a nightmare. I have tried to write something shorter to hand to her, but I don’t seem able to. That would just prompt questions, which is something I’m terrible at dealing with (I over analyse all possible responses and the words for the answer get “stuck” and either come out too slowly, too jumbled or not at all).

I don’t think having a formal diagnosis will change anything much, except that I will be less harsh with myself when I can’t do things (not that I’ll necessarily give up trying to do those things, but I’ll understand why it is so hard for me, why I react the way I do, and I’ll be able to explain it to others if appropriate).

If I don’t get a diagnosis because the GP won’t refer me, or refers me but the assessment says I am not on the autistic spectrum, I don’t know where I’ll go from there. But I'll face that if it happens I guess.

Last edited by YellowBanana on 31 Mar 2011, 10:32 am, edited 1 time in total.

Heh. Replying to my own post.

Made it to the appointment having spent considerable time summarising onto one A4 sheet of large font what I thought were the important points. Really to clarify what I wanted to say, but as a back up in case I couldn't say it.

The waiting room wasn't easy because I was really stressed, there was music playing and to calm down I played LetsTrans on my iphone to give me something to focus on. Worked a treat until a family with two young girls came in ... the two girls decided my corner of the waiting room was the ideal place to play a game involving throwing a ball from one side of the room to under the seats on the other, complete with excited screaming and shouting, right across me. Was I invisible???!?!?! I would have got up and moved elsewhere, had I not been stuck to the seat.

Anyhoo, GP came and called my name. Went in. Couldn't speak. Took paper out of pocket and mumbled "I didn't really know where to start". She spent some time reading and said "Yes, I'm sure we can get you an assessment" in response to the written (in bold) question about half way down the page: "Is is possible to get an assessment for autistic spectrum disorder as an adult?".

She then asked me some questions about my job, my marriage, my interests, and my history of depression which I answered as best I could.

And she finished off with said "I'll refer you to a psychiatrist". She's never met me before; maybe that's a good thing.

So there you have it. Let the waiting begin. I have no idea how long the wait is for an NHS psych appointment in my area.

Now I just have to tell my lovely husband what I've done. He knows that I've been considering the possibility of ASD as a background reason to depression, but is very quiet about it (doesn't acknowledge or deny the possibility, just accepts that I'm being my usual odd self!) and he doesn't know I had an appointment with the GP today to ask for help.

But thank f*ck that's over. Why can't we communicate with our doctors through email or instant messaging. Why make us actually go and TALK?! !??!?!?!?!

The hospitals do. It's an absolute disaster for "losing" records. You would be mortified how many people don't actually know how to use computers and e-mail properly.

But well done for actually having the balls to go up and ask so directly like that. It can pure hit and miss what kind of reaction your GP will have and some of them say the most stupid things to people sometimes. Especially to women. So it appears the GP you saw was quite enlightened and professional in her dealings with you. Good to hear

Thank you so much for this post!

I was thinking of trying to go to the GP for a referral, (though I'll have to take my mum, as I'm only 14), and now I finally know what kind of thing is going to happen.

It's going to be very hard for me, like it was for you, but now I know was may happen from your post, it's put my mind at ease.

I hope it all goes well for you.

A psychiatrist? I thought you would be refered to someone who specialises in Autism. I'm probably wrong though. Maybe someone who specialises in Autism is a psychiatrist, I've never been through the process so I'm a bit clueless myself.

My understanding is that "someone who specialises in Autism" can be someone from any number of professions. Or an interdisciplinary team. The psychiatrist referral is a way in.

The National Autistic Society sent me details of my nearest specialist assessment centre. It's a 4.5 hour drive away. I find driving stressful and usually choose not to, and although public transport is a possibility I'd probably have to go down the day before because of the timings. It's not the most accessible place for someone like me!

Frankly I'm happy she didn't just give me meds, tell me I'm depressed and send me away with words that essentially mean "pull yourself together" - which has been the pattern for the last X years.

I've made it to 37 without diagnosis. I want it for my own peace of mind - so I know for sure what I'm dealing with. If necessary I can wait a little longer - if the psychiatrist is no good, then I'll push for the assessment centre, but I'd much prefer my first step to be a 30 min walk up the road ...

My experience says that with the medical profession you need to know what you want, but also go gently with that for the best results.

I think that if you are still school age then you might be best to talk to someone at school and go the educational psychologist route, which can be organised by your school.
(As an aside, for University students I'd suggest speaking to the University's disability advisers, who can organise an ed psych referral)

Thanks for explaining YellowBanana, at least you've got a foot in the door.

Some psychiatrists do specialize in autism. I was diagnosed by a child psychiatrist who knew a lot about ADD and autism both (he even had ADD himself and some "cousinish" traits). However, just being referred to "a psychiatrist" rather than someone who specializes in it is bad. Most adult psychiatrists are not properly trained to screen for adult autism in any form. When they see someone, they try to pigeonhole them into diagnoses that are more common for adults to come to psychiatrists for (depression, anxiety, schizophrenia, personality disorders, etc.) This is not good if you're going for a diagnosis. Because it's then a crapshoot as to whether you actually get one who knows what they're doing or not.

Well, I would, but I've heard educational psychologists cost money (which my family doesn't have)... Oh well, we'll either save up or do the GP thing.

Sheldon96,

Your school can refer you to an Educational Psychologist, and as far as I am aware you should not have to pay. I note you are on the Isle of Wight so this might help: http://www.iwight.com/council/publicServices/serviceFaqs.aspx?servID=2013&questId=1682

Worth investigating.

I know folk at University who have had concerns about dyslexia, dyspraxia, AS, etc who have seen disability advisers and after a quick screening by the advisers to check if there really might be cause for concern have been referred to an ed psych for proper assessment at no cost to them (the University paid).

If I were still in education, this is the route I would have first followed rather than going to the GP.

OK, so the appointment with the psychiatrist has come through and it's much sooner than I thought it would be (start of May). Sometimes the NHS aren't so slow. Unfortunately, it's at the only date & time when I *really* can't go as I have totally immovable commitment at that time.

Fortunately, they have given me the option to EMAIL them instead of having to phone. Thank you, thank you, thank you!! !! !!

At least it means I'll be able to do it soon rather than spending the couple of weeks before the appointment getting more and more anxious about having to make a phone call, not managing to make it and generally getting in a real mess over "such a little thing" (don't you hate it when people say that??)

Of course, now that I have the appointment (although I need to rearrange it), I am terrified. What happens when you see a psychiatrist for the first time? According to the letter the appointment will last for about one hour. What happens if you go but can't get any speech out??? What if they can't see any of the problems that I experience because I can't explain them???

......and what if it goes well? Always remember that is a possibility.
The psychiatrist will be aware it's your first time, and will understand you may feel lost/uncomfortable/scared/lost for words.
You chose to do this to seek help, remind yourself of this. You are the important one in this situation.
And remember that everyone here at WP is wishing you well.
I shall be going through the same thing sometime soon, maybe we can compare notes.
Good luck anyway.

Ah! An optimist How refreshing! Thank you for the reminder.

I think the problem is fear of the unknown... I have no idea what actually happens at the appointment except that I'll be there for approximately and hour ... how will that time be filled?

An hour for an appointment seems like a hell of a long time when I usually keep my personal interactions as short as humanly possible for the situation (sometimes inappropriately so).

So, I emailed them and they have rearranged for later the same day so that I can now attend which is great.

Still so thankful they mentioned in their letter to "email or phone". Took away so much additional stress.

Now I just have to prepare myself for the appointment. Anyone got any suggestions about how to go about this?