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Hello, what next?

Joe
over 1 year ago

Hi,

I live up north, though originally from down south.  I'm newly diagnosed (yesterday) and just received my report.  The report seems accurate and I'm not surprised or in disagreement with any of it.   The recommendations though just seem to be  a bit generic, I think I was hoping for something more personalised, so I'm wondering what other people did post-diagnosis?

Should I work on non-verbal communication and socio-emotional reciprocity or not?  I know since the pandemic I've struggled to put the mask back on, so I just want to be free of all of that now.....

I also do some poetry/spoken word - here's something I wrote yesterday called 'Diagnosis':

And suddenly I wasn't on the waiting list anymore
And it's not like someone switched the light on and I could see
It's more that someone switched the light off
The one in the back of the room
That had been flickering and buzzing
Annoying and distracting me
Whilst I wondered why no-one else seemed able to see or hear it
Why no-one else was bothered by it
It was gone
And I was free just to be who I am
Just to be me

Parents
  • over 1 year ago

    I love your poem, thanks for sharing! And welcome to the forum. I’m afraid that that light may fade back up again, as there’s no magic bullet here. Just empathic support where you can find your tribe (here!) and self-advocacy in environments where you know sensory overwhelm or masking have you like an anxious leaky battery the most. 

    My report was the same. Thorough, conclusive, a helpful and relieving diagnosis. But with nothing too bespoke off the back of it - mostly numbers and websites largely pitched towards parental support with autistic kids, not adults already ‘coping’. But hopefully you’ll be able to make more sense of your life, fit all the pieces together better, and re-frame some ‘I’m bad at this stuff’ to ‘I’ve done pretty well here, considering!’ For me, that last part is the crucial one. 

Reply
  • over 1 year ago

    I love your poem, thanks for sharing! And welcome to the forum. I’m afraid that that light may fade back up again, as there’s no magic bullet here. Just empathic support where you can find your tribe (here!) and self-advocacy in environments where you know sensory overwhelm or masking have you like an anxious leaky battery the most. 

    My report was the same. Thorough, conclusive, a helpful and relieving diagnosis. But with nothing too bespoke off the back of it - mostly numbers and websites largely pitched towards parental support with autistic kids, not adults already ‘coping’. But hopefully you’ll be able to make more sense of your life, fit all the pieces together better, and re-frame some ‘I’m bad at this stuff’ to ‘I’ve done pretty well here, considering!’ For me, that last part is the crucial one. 

Children
  • over 1 year ago in reply to Shardovan

    Thanks! I write to express myself quite a lot.  The last few days is the most positive I've been for a while.

    Today for example I didn't beat myself up for spending all day yesterday playing a computer game, like I normally would have.  I accepted that's what I needed to do to give myself some space.

    Not a big reader but just started trying to read a book called Unmasking Autism and read onee whilst waiting for diagnosis called Growing into Autism that I found helpful.