Published on 12, July, 2020
I was referred for ASD assessment in December 2016 and told I could expect an appointment in Summer 2017, maybe earlier. Almost 2.5 years later I'm still waiting and I feel like the anxiety and uncertainty have taken over my life.
I know its NHS waiting times and it's not their fault but not having a set date is stressing me out so much. Every time they tell me 'your appointment will be in April' (for example) then I get myself all worked up for it, I check the post every day from the 1st March and nothing comes. So then I call them and get told it's now not going to be until May and the whole cycle starts again. It's hard not to think about it when it's always 'next month'. I'm currently set for June/July assessment date.
I've had a lot of change and minor stresses going on in my life recently too, which hasn't helped. My GP has put me on anti depressants and has offered to prescribe me something to help me sleep if I feel I need it. I'm trying different things to try to relax a bit but i tend to get very obsessive over things. If I could afford a private assessment I would. I also feel like I can't talk to anyone about it because if it turns out I'm not autistic I'll feel very silly and I don't want anyone knowing about it!
I know a lot of you will have experienced a long wait for assessment and I'd like some advice on how you got through it.
I do very much sympathise with your situation. I've experienced similar issues. I waited for 2 years before finally having an assessment. Originally there was some admin error and my diagnosis was not processed any further after the initial meeting. I had to start from the very beginning almost a year of waiting for noting! And I was told during my second initial assessment that I would be see within half a year, but it took almost a whole extra year of waiting. I had the same issue with not having enough money for a private assessment (otherwise I would have gone private too). It turned out after two years of waiting, I did finally save up the money, ironically. I completely understand how you feel, and how stressful the uncertainty is. The uncertainty whether you're autistic, the uncertainty of the wait. And I can understand how lonely it is, and how there's no one to talk to about this before a formal diagnosis. But, welcome to the forum. There are lots of people here who had similar experiences as you, and a lot of people currently in similar situations as you. You're welcome to post and comment, and no one will care if you are formally diagnosed or not. I do wish you best of luck in the process, and that the end of the wait will come soon.
Thank you for the welcome qwerty, and for sharing the story of your assessment process, its helpful just talking to someone else who's been through it.
No problem! It's nice sharing with people who have similar experiences. During the past two years, I found reading through this forum very helpful and comforting knowing that I wasn't the only one waiting forever for an assessment. Similar to you, I have been told so many false dates about when the assessment should be, and I kept checking my mail everyday whenever they say it's near. I know the pain, the uncertainty. And what they're doing is extremely stressful for people who do have autism, since it involves so much uncertainty and change of expectations (which is what people with autism struggle with).
Absolutely! And, "you'd think" that someone would have foreseen this and made at least some attempts to ameliorate it within the constraints of overworked & under-funded services. I know that we can ask for the proverbial "moon on a stick" but some material or communications to reduce anxiety and fretting would surely be possible?
Yeah I noticed the irony that the diagnostic service for autistic people is set up in such a way that is most likely to stress out autistic people!