Published on 12, July, 2020
Hello everyone.
I am just venturing into a training course to understand more so that I can help my son in any way I can. He is 23 but although I have tried to get him to talk with various people over the years he 'masks' so beautifully, nobody has yet put him forward for professional diagnosis.
As part of the course I am doing, I would really appreciate if anyone would share their own difficulties in obtaining the actual diagnosis?
Thanks in advance. :-)
Theresa
Hi Theresa, not sure I had difficulties in getting diagnosed, other than the length of time it took me to realise I was probably autistic and had a good reason to seek diagnosis (workplace bullying).
I lived for 51 years masking, and once I suspected I should get a diagnosis, I did my research. I found out about the diagnostic process, about the things they check for, and how those particular things (the 3 domains: social interactions, language/communication and repetitive behaviours), reading up about the ways autism affects how people interact. I took this list of things to my GP in August last year, and was told I'd be put in touch with Community Mental Health services but there was a very long waiting list. I've waited this long, so that's OK. November Community Mental Health wrote to me and said that they had a huge waiting list and since it seemed there would be little for them to do other than diagnose (my summary, I don't recall their exact words), if I agreed they would pass me on to a charity for the diagnosis, and again mentioned long waiting lists. I was contacted by the charity in February, interviewed, tested and diagnosed in February/early March. Despite my experience of masking for such a long time, there were still 'giveaway' signs when they collected history and did the practical tests.
I think I had so few problems during the diagnostic process because I'd done such thorough research beforehand, it was just like getting a rubber stamp/confirmation.
If you'd told me in my 20s that I am autistic, I wouldn't have believed you. I would have listened to your reasoning, but it wouldn't click unless I read lots of personal autistic experiences that I could relate to. Everyone's different!
Why would you want him to be diagnosed if he shows no interest in that?
Fiona said:Why would you want him to be diagnosed if he shows no interest in that?
I would second that.
He is an adult and needs to take ownership of his own healthcare decisions, including any diagnosis.
If he is curious then suggest he takes an online (free) test and this will give a good indication as well as experience of the sorts of questions that will be asked so he can think more about them while he waits for an official diagnosis.
https://www.thevividmind.org/blog/test/autism-test-online/