Published on 12, July, 2020
Hi, I’ve been referred for an adult autism assessment. In most of the literature I’ve read it says about the assessors wanting/liking for you to have someone with you, who knows you to give some background information. I don’t have anyone who can provide this. Is this likely to be a problem? Many thanks.
I got my diagnosis last year aged 63, without anyone to support me, or provide any evidence of my early life. It was all done through the observations of the person doing the diagnosis, and the answers I was able to give to questions. She seemed experienced enough to recognise sufficient signs. This was my second attempt, as the first time I had an inconclusive result. A different person did the actual assessment that time, but the one who did the recent one was also involved, and had disagreed with the first result. She had to be absolutely sure to be able to change the first result.
It may depend where you are in the UK. I think Wales, where I live, is probably ahead of many other areas in diagnosis and support, but it's certainly not perfect.
Thanks, undeniably it’s going to be different for every person. I don’t really talk to people much & so finding this forum is great. I just feel I need to be prepared...as much as possible. Have you found your diagnosis and support ‘liberating’?
I needed to know definitely, but it's 5 years since the NHS noticed, and put me on the waiting list, and it was about 3 years before that when I started to work it out for myself. In that time I've become almost completely isolated, and stuck in a situation that I can't get out of that occurred in the few years before that. I haven't actually got any support yet. I've been trying to get help for over a year without success, from every organisation I can think of. I'm on the waiting list for support from the Welsh Integrated Autism Service, but don't know when that will happen, or if it will resolve anything.
As far as being prepared for the diagnosis goes, I read a fair bit about the subject, and got some useful ideas from it, but there was always a doubt about if it was the problem, or if I'd actually get a diagnosis. A lot of the characteristics of autism could be some other condition, and lots of NTs experience them some of the time, so I always had doubts. Getting the letter that says I actually have it made a huge difference, because now when I see a feature of autism in me, I can be sure that I have that feature because I'm autistic. But there's a long way to go. I need to try and start an almost completely new life, but it could take several years to get out of my current one, and at my age I'm running out of time. So there's big relief that I finally know, but lots of fear and anxiety about the future.
Hi again. I’m so sorry you’re having so many problems without the support you need. I too am very isolated but I am fortunate in that there are people around me who check-in from time to time to see how things are going. I was starting to think that I would be better off leaving the assessment but after what you have written I now think it’s better to know one way or another. It would answer a question & some insecurities. Life is difficult so I think any problem I can resolve is a good thing. In terms of waiting times my local NHS authority is sub-contracting Healios (an online alternative) to help try and cut down on the waiting times. I hope you finally get the support you need & deserve soon!