Late diagnosis

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Today I've been told by the NHS that it's unlikely I can get a diagnosis without someone to provide evidence about my childhood. I'm 57 and there isn't anyone who can do that.

It's made me very agitated after what I've gone through in the last two months, realising this and getting evidence from people who know me now.

Is this right? Does anyone else have experience that would help getting a late diagnosis?

Many thanks.

Most places will want to talk with someone who knew you when you were little. Some will do a diagnosis without doing that. For example, when I was diagnosed, the psychologist had not talked to my parents or sister or anyone else (however, I had also done quite a bit of research by looking through old records, and talking to people myself, albeit not in the frame of autism, and so could pass on the information). If you look around enough, you may be able to find someone who will diagnose you without needing to talk to your parents. No matter what though, I would try to find as much evidence as you can about your childhood (ie. school reports, other documents, etc.).

btw, just saw you posted about NHS, so you are in Britain. I'm in the US, but from what I've read on here, you would probably have to go outside of the NHS and do a private assessment if you don't have someone who can talk to them concerning your childhood.

A sibling could be useful.

Hi, I received my diagnosis a year ago, I was 56, I had no one who could answer any questions about my childhood, they just asked me things about it, the whole assessment took just over 3 hours, don’t give up Hun, oh I had my assessment done in Sheffield

Good luck hun

Thanks so much for the replies - I should have done this a while ago but have just been constantly overloaded.

I've got my first assessment with the psych tomorrow so I really appreciate the encouragement from Sheffield. I'm in Ayrshire. I feel like it's the test of a lifetime. Will I pass?! Lol.

Thank you. xx

Oh wow! Good luck for tomorrow, I normally hate to ravel and meet with people, especially drs, but that day was so exciting, important and scary all rolled up into one, lol, and once she and the other dr told me my result, it was a big hurrah moment, now all my life suddenly was explained, all my quirks, my fears etc.
Just be yourself, you’ll do fine, let us know how you got on please

Heidi

Will do, Heidi. Thanks.

I'm told it will be 4 -6 appointments a month apart so it could be some time!

But, yes. It's the one time when I just have to be myself rather than the person I've been masking all these decades!

Ahh! I’m with you now, after years of getting someone to listen to me, I found it in the psychotherapist I was seeing, I told him that I don’t think it’s depression/high anxiety, told him I did the online tests for Aspergers, he got me to do one for him, he then agreed with me, he was my saviour, he wrote to my dr requesting she refer me to the Sheffield adult autism service, the same dr who laughed at me saying I didn’t have ASD, well maybe 4 or 5 weeks later I had forms to fill out prior the my assessment, and the rest is history lol, Never ever give up Hun, we deserve all we have been denied, Now awaiting a assessment date for my 13 year old daughter, I know she won’t have to struggle like us

I’m here if you need to chat, vent etc

Thank you, Aspie Utah. Must be early there!

I don't really have photos or school records but I have a ton of memories I've noted down so at least I've got that.

It's quite a thing to go over your childhood at this distance and realise how it all fits. Just need to convince the psych.

Thanks, Heidi. I've sent you a PM.

Well, I'm just back from the assessment. It was pretty uncomfortable.

Lasted 90 minutes and the psych was quite full on, giving me loads of info at the start, sitting right opposite me in my personal space, no handshake until I offered one and I got overloaded. Also he told me he had already prepared a report about me from speaking to other members of the team I had seen and from the paperwork supplied to him. I was a bit put out by that, given that he hadn't even met me before drawing that up.

After putting on the sunglasses and re-arranging the seating so I was at 90 degrees to him instead of right opposite, I managed to relax a bit and he started asking questions which made it easier. We covered all the points I was expecting - sensory, social, obsessions, stims (though he he didn't know that word) etc - and I did feel better towards the end.

He made it clear his department didn't specialise in ASD diagnosis but, hinting that what he had already learned about me and his own experience with me would be enough, he didn't think it would be necessary to refer me to someone more specialised. I took from that, that I fit the bill so far.

What he also said, in terms of not having childhood evidence, was that without such evidence before the age of 3 he could only give a conditional diagnosis. He mentioned someone in a similar situation, and that was their result.

There are two more sessions to go where he will further refine the report, with me being able to read it and have input, and that will be that.

Phew. I think it's relatively a good outcome but I'm thoroughly drained.

Thanks for all your input. It really, genuinely helped to know you guys were there for me.

Thanks AspieUtah.

I think he meant the diagnosis would have a qualification that it was done without childhood evidence which cannot be produced. In relation to the person he cited, he said that was enough for that person.

In relation to me, he seemed to indicate that if it wasn't enough for me, a further referral to a more specialised time might be possible but he was keen not to jump the gun on anything.