Hi, noob here so please bear with me if I speak out of turn
I'm 51 years of age and male, over the last thirteen years I've become aware of the fact that I might be on the spectrum. A few years of denial followed by some more years of largely ignoring it. Did a couple of online tests during periods of emotional distress, one around 2012, another at the end of last year, both said there was a likelihood that I was ASD. Read up on the subject in more depth after the last test and found that things that have seemed odd all through my life make more sense from the perspective of ASD so went to my doctors. Got referred and was asked to fill in a more extensive multiple choice test, this has been reviewed and I'm apparently going to be assessed professionally so guessing the screening questionnaire suggests that I may be ASD but I'm still waiting for the appointment
I wasn't going to hit up any forums until I'd had confirmation from a professional assessment because a) I don't want to waste peoples' time and b) I might yet be assessed as not being ASD, however, since starting this process my head has been in an odd place and I just wondered if anyone else had gone through similar feelings so here goes:
I feel like the fundamental underpinning of who I am has been shaken. I notice things about my behaviour now that I hadn't done before. My head is mixed up between a new-found clarity of why I may act in certain ways and a feeling of no longer being the person I've always thought I was. I feel like I'm in limbo until I get assessed. I've been on this planet for 51 years and am a functioning member of society with a job, a partner, friends, yet I might have had a disability that impacts these things? I'm confused, is this common?
Also, my 'symptoms' seem worse when I'm under more stress, is this a thing?
Yep, just diagnosed in the last few weeks at 47 and all of the above is a carbon-copy of how I felt, including feeling like I was 'getting worse not better' whilst gong through the process and particularly while waiting for the diagnosis.
This book was recommended by my Psychologist and I think it helped: https://www.amazon.co.uk/Diagnosis-Asperger-Syndrome-Spectrum-Disorder/dp/1849054339
It's pretty much a cr4p emotional roller-coaster... and you just have to ride it out...
There's a lot of good support here though...
Thanks for sharing your experience, and for the book recommendation. Looks good
So, further to my original post and still waiting for an appointment, what if my assessment is not on the spectrum? Where does that leave me? I've still got all this stuff going on in my head and it has got me into an odd state. Can I just go back to 'normal'? Can I still chat on here??? I've been waiting since January, when I chased it up at the doctor's recently they said I'd been accepted for assessment based on the questionnaire. I appreciate that mental health services are underfunded but I could do with resolution. Part of the process, I guess
I guess maybe that's a bridge that you cross when you come to it. And what is "normal" anyway? Def still chat on here!
That's a pretty common fear, the answer is that just because you don't 'tick the right boxes' during an assessment and are diagnosed as not having ASD it doesn't mean you don't have ASD...
You can self-diagnose.
You are 'normal' but, you now have more information and need time to adjust to the 'new normal'.
You can chat here whether you are NT, ND, self-diagnosed, mis-diagnosed, professionally diagnosed - this is intended as a safe, supportive space.
If you want to speed things up, consider seeing a clinical psychologist privately - my NHS referral was for an appointment in 'at least' 20 months time...
By going private I speeded things up and was able to see someone who specialised in ASD in older patients, rather than being hit with the questions and expertise based around children...
20 months? Blimey! That's bad. They told me around 18 weeks but that was 22 weeks ago. Think I'll chase it up at the doctor's, see if I can move it forward. The private route might be an option. I get the focus on childhood ASD and subsequent lack of adult diagnosis support, it's not the first time I've heard it mentioned. I guess the NHS isn't fully geared up for it, suspect there's an element of luck in quality of services and skills of particular practitioners, whereas, if you go private, you can choose a specialist
Thanks to you both: need to adjust my mindset, whenever I go round the loop on this I come back to the point of thinking I am 'normal' because this is how I am and that is normal to me but then I'm conflicted by the fact that I may have a disorder that isn't 'normal' in the wider context
It's not any better for children unless they can clearly see they tick every box and traits are highly visible.
My daughter has been passed around departments for 4 and a half years with still no assessment! Private is not an option for us. It's just a waiting game which is bad for everyone.
I am also 51 and awaiting assessment. It's a strange world.
Hi, and welcome to the forum.
I'm waiting for an assessment as well, but I know it's going to be a very long wait. I have found this to be a good place to look for advice and help, and sometimes to offer support to others. We are all at different stages, and there will be others here going through the same one as you.
I can relate to what you have said about being shaken, and noticing things about your behaviour which you hadn't noticed before. I felt like I was having an identity crisis for a while, remembering and re-evaluating incidents in my life from a new perspective, and wondering how I could have got to my age without anyone, including myself, noticing I might be autistic. I don't know if there are any shortcuts through this stage, but what I personally found helpful was to be on this forum and realise that I wasn't alone, and to read books written by people with autism, especially those diagnosed later in life. I found many similarities. And their stories of how they adjusted and coped, and found the positive side to their condition, gave me hope.
I think that it is common for "symptoms" to be worse under stress, because it's then that you are under most pressure, coping with the everyday social difficulties as well as whatever extra stress you have. It's not surprising if you find yourself doing more self-calming behaviours or find social interaction harder than usual, or find it more difficult to stay calm and collected.
I saw statistics which suggest that 1 in 65 people are autistic, so that's a lot of people. With that in mind, maybe it would help to try to consider yourself as "differently normal." (It's a phrase I found in one of those books I mentioned earlier.)
Don't worry that you might be "wasting people's time", because you certainly are not. Best wishes.
Re: 1 in 65, indeed, have seen that figure elsewhere and believe it to be the current childhood diagnosis rate, also that the figure was 1 in 100 back in the day. Assuming the incidence of ASD is more or less constant, and given that awareness seems to have increased in recent decades, I reckon there are a lot of people out there of a certain age that would now be diagnosed in childhood but who weren't when they were children
Anyhow, wanted to thank everyone who's contributed to this thread and to say that you've helped me straighten this out in my head. Challenges await, I'm sure, but I feel better placed to face them now