Published on 12, July, 2020
I was diagnosed 2 weeks ago at the age of 31 and I definitely wasn’t expecting this huge sense of imposter syndrome!
What I find confusing is my issues didn’t really start to come to light until I was 17/18 and started having panic attacks (they generally happened in busy environments or around flashing lights). After that it was down hill from there and my ability to function just got worse and worse.
Prior to that though I was so good at hiding the things that made me anxious and I never really shared my emotions. I don’t recall having panic attacks and coped reasonably well with flashing lights etc. While especially in my teen years I always felt different for no particular reason, I still managed to get by with no obvious issues.
I did stim as a child and teen but very subtly (scalp picking, picking the skin around my nails, swinging on chairs, smelling things, rubbing my feet together when in bed, dancing, moving about a lot etc) but as I went into adulthood and I became more educated about stims I definitely started doing more obvious stims (rocking, ticing, singing, swaying from side to side, rolling of the eyes, nose scrunching etc) I sometimes feel I started doing them due to being influenced. Yet I now can’t stop doing them because they make me feel so much happier. This whole thing is confusing to me.
Why do you think a lot of adults who get diagnosed late seem to have got by with no obvious signs until something big happens to them as they get older? Why do you think as we get older we can’t seem to cope as well? I would love to know other people’s thoughts on this because it blows my mind that I had this my whole life yet managed to get by and function.....
I wasn't diagnosed until I was 59 years old. I was only diagnosed because I realised that I was autistic and sought a diagnosis. I had not realised that I was autistic before this, because I had no idea what autism was really like and I had always just about managed to cope in society. Previously, the only things I knew about autism were: 'the uncommunicative child lining up toys', 'the artistic or musical savant', 'Dustin Hoffman in Rain Man' and 'Sheldon Cooper in The Big Bang Theory', and I was not really like any of these - well, OK a bit like Sheldon Cooper, but nowhere near as extreme. I sometimes react quite negatively to people saying that 'autism awareness' needs to be superseded by 'autism acceptance' etc., because if there was more awareness about autism it would not have taken so long for me to realise my autistic identity. I'm sure that this applies to many other late, and undiagnosed, autistic people as well.
I was even seen by a psychiatrist once (although he was weirder than I was) and had two years psychotherapy. I can remember the psychotherapist saying at least I was not autistic only to be diagnosed as autistic 10 years later.
Yes, unfortunately, the lack of awareness of autism extends to many clinicians as well.
Yes, though many pairs of identical twins exist where both are autistic, there are statistically valid numbers of identical twins where only one is autistic. Therefore, a purely genetic cause is not supported.
Thinking about it it might be polycystic liver disease not kidney
Yes sorry I could have been clearer. As far as I am aware Huntington’s is caused by s single gene which you either inherit or you don’t so there is a blood test for it. Similarly there are a couple of genes linked to breast cancer and polycystic kidney(?) disease and maybe more now.