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.
Sorry that was supposed to say Summer 2018 in the 1st paragraph.
That is a long wait and hopefully they'll see you soon. I was told I have to pay privately as it's not funded in our area :(
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.
Sorry to hear that mouse. Can you afford to pay privately?
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.
Hi NAS62371, I can certainly sympathise with your situation. I was referred following a GP appointment in Dec 2017, and expected about a 9 month wait. I was seen by the evaluation clinic in Feb 2019 after a cancellation appointment came free. Since then I've learned that internal meetings to review cases happen only once a month, and I have to keep calling the clinic for information. I'm currently waiting for an appointment for an ADOS test and know that even when that happens I will need to wait for the result to be discussed at the next internal meeting - so I could be waiting until Xmas 2019 I think, two years after my visit to the GP.
Like you, I have spent significant amounts of time staring at my calendar, asking myself "When can I reasonably telephone the clinic again to ask for more information?" and trying to provide myself with an estimate of when I might call and actually discover new information & when the process might end.
I sometimes feel that I can't / shouldn't refer to "my autism" without qualifying it as "my suspected autism", and I also feel that if I get a negative diagnosis that many people will be disparaging along the lines of "I always knew he was just looking for excuses for.....". But like you, I feel that I *have* to talk about it, I *have* to try to make sense of it - the stress that masking ("my suspected masking"!) was causing me led to mental health problems and addictions and put me at risk.
There is no easy answer as to how to get through it, other than realise that (as far as I know) the "threshold" for diagnosis is based on a balance of probabilities (specificity vs sensitivity), and if you have symptoms that span "persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, then you probably do have autism and can reasonably talk with certainty about that irrespective of either waiting for a formal diagnosis or even being told that you don't meet the threshold for "to the extent that these “limit and impair everyday functioning”. Many people have said (rightly, I think) that this last test - limiting everyday functioning - is unfair on the many people who are expending vast mental effort to ensure that their everyday functioning is *not* affected, despite suffering incredibly in the process (masking).
I also draw some comfort from the saying that "Anyone who presents at their GP saying that they believe that they are autistic, probably is - after all, why would someone without autism anticipate being overjoyed to receive a diagnosis of autism?" - and I also find it telling that I don't believe that I have any *other* developmental condition; I am not simply being hypochondriac, because if I were, why would I limit my hypochondria to autism?
So, as many people have said to me, irrespective of the outcome of the journey, the thoughts that lead us here are shining a clear light on what stresses us and what fulfils us, and that in itself is hugely valuable.
We shouldn't need a label to allow us to ask others to help us seek what fulfils us and moderate what stresses us, though the explanatory framework attached to that label helps us understand which is which.
My username alludes to my realisation that I am allowed to be me; I've always been super stressed by the imperative to choose and send Christmas cards, I'm an adult (over 50) and I'm not doing it anymore.
Thank you for your reply I'm done with Christmas cards. I've been lurking on this board for a while and have been following your journey (hope that doesn't sound too stalkerish and weird!).
I'm nodding my head in agreement with everything you say. I often think that maybe I'm just a hypochondriac but there was a time about 10 years ago when I was hospitalised for a couple of months with depression and mild psychosis and I spent that time looking through psychology textbooks trying to find an explanation for why I was like this but nothing fitted. If I was desperate for a label there are many other labels I could have gone for before now. I figured out for myself that being around people and in noisy, crowded places seemed to have a negative effect on my mental health; I decided I must be extremely introverted.
I'm trying to remind myself that even if I don't have autism, I have enough of the traits that it's not unreasonable that I thought I might be. And I've made so many changes to my life in the past 2 years based on the assumption that I'm autistic, and as a result I'm so much happier than I was, so it's not all been for nothing.
I hope all goes well with the ados and that you get the result you want.
No problem :-). No it doesn't sound stalkerish - it's nice to know that someone is following along!
Yes apart from depression and anxiety the only thing I ever considered that I *might* have was schizophrenia when I read about when I was a teenager - but that was little more than "ooooo I wonder....." contrasted with autism where I'm constantly saying "Yes that's me!".
It was my reaction to noisy restaurants that led to the "aha" moment for me, a year after realising that my dad is probably autistic I suddenly realised that I was but was masking.
Likewise I've made changes and am so much more relaxed, my addictions have faded into the background (no longer needed) and I'm starting to enjoy simple things that I had fallen out of love with in search of bigger thrills. Little things like using a pressure-washer to get algae and moss off of garden walls, doing simple repairs, cleaning stuff, and pursuing my hobbies again & enjoying the company of our dogs.
So in some ways the result of the process isn't of any practical importance, but it would be psychologically such a relief & I want to get it out of the way.
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).
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!