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Your opinion and ideas on how best to streamline an autistic diagnose

Daxa95

I've talked to numerous people - on the spectrum, heard their stories. And it's a shambles, getting told different complex procedures. And getting misdiagnosed on some occasions, what I'm collating at the moment. Is peoples stories on this forum, sample questions would be; the good points, you got correctly diagnosed, the care team had good communication etc. The bad points, communication was bad and confusing

  • I'm happy to contribute to this. I'm late diagnosis (46)

    I had a really good experience from initial referral to final diagnosis and I can't fault my assessment team - although I went private. The only issue I have is that over the years when I was seeing GP's my struggles were all put down to depression (which shares comorbidity with autism). I fall into the "high functioning" group and communicate well if I feel comfortable about surroundings, purpose of discussion etc so with a 10-15 minute GP appointment I can understand how they felt the work was done once I said I felt better (i.e. I was removed from all my stressors long enough for me to recover from being overloaded from... you know..... life).

    It's only when someone had a conversation with a friend of theirs who was a psychologist that being on the spectrum was discussed - and which prompted me to raise the issue with my GP who was supporting me through my last depressive bout. I supplied him with a mood diary which he'd asked me to fill in - apparently the way I'd written it suggested something was amiss - but I think when I raised my AQ score with him that kind of pushed things in the right direction. Although he talked about an NHS referral I haven't heard anything since so I was probably best getting the diagnosis independently. So, more awareness among GP's with a willingness to explore the possibility of autism and either a speedier NHS referral process or at least something that tells me that a) I'm on some kind of waiting list and b) how long I have to wait. May have just got missed in my neck of the woods, and it might be Covid pressures, but even so, I'm a bit concerned that I've heard nothing since the GP mentioned it - although they have the report from my team now so if there was ever a referral it's probably been kyboshed.

    The two other issues that bug me are is that my autism was missed for years - I really struggled but then I also masked a lot to the point where I could no longer function.  I know there wasn't the same level of awareness as there is now and I'm thankful for the diagnosis now but I've some regret (working on letting that go) about struggling to function in a social world that I barely understood or felt comfortable in. The second is the follow-up. So I have the diagnosis and I was lucky to be funded for a couple of follow-up sessions with a psychologist but if I'm looking for any additional support outside of that then it's self funding. Those hour long sessions are really useful but I'd struggle to afford them on a regular basis. I can find material on my own (I have the start of a small library on autism literature) and am comfortable looking at academic research but it's still nice to be able to cover things with a professional who researches this for a living.