Awaiting NHS assessment - my head is in an odd place

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?

Parents
  • Hi, and welcome to the forum. Slight smile

    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.

Reply
  • Hi, and welcome to the forum. Slight smile

    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.

Children
  • 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