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Fear getting old as an autistic person?

Dawn

I do.

I really do. My sensory stuff causes mayhem in medical contexts. There's more as you get older. My GP thinks I "suffer with autism" (God help me!). I fear all medical treatment. I fear all doctor's appointments. How the Hell do I even speak to them when something is wrong.

The only services that exist are for the intellectually impaired or children.

Where do I go? What do I do?

I fear every tiny twinge in my body.

I fear being locked up in an old peoples' home, forced to socialised in bingo games I do not want to participate in; forced to bang a tambereen while a school choir sings.

I fear being left to the mercy of under paid staff in a care home where the state robs you of a life time of struggle which should be left to your kid, while they squander that abusing you.

In the words of The Who: "Hope I die before I get old"

At 58 I am aware that I have already out lived autistic life expectancy. That's 54. I was 56 when diagnosed. I am happy I lived life as an autistic person (albeit I had no idea I was one), but how the Hell do you manage to grow old as an autistic person?

I'm scared. And I am still looking after elderly parents who depend on me and haven't even retired myself yet.

Everything about old age is scary. And I'm scared.

Parents

  • Dawn, can I ask where you got the life expectancy  figure from?  because if it's 54 I've already exceeded that by 16 years!

    I was looking forward  to becoming old and cantankerous. 

    Oh! hang on a minute..................

    Ben

  • in reply to Ben

    Seen in quite a few research papers also Jac den Houting's Ted talk, which is well worth a look.

    If you dig further into the Stats, 54 is the much cited recent estimate, but different groups of autistic people experience different reasons for early mortality.

    In the intellectually impaired epilepsy can have some thing to do with it, for others lack of easy access to health care, also suicide rates which are especially significant in the late diagnosed high IQ, and higher again in women. Then stress related illness or alcohol problems.

    However if there are no medical co-mordidities like epilepsy say, there is no reason an autistic person can't have a long healthy life without any of the stress related stuff or suicidal ideation, provided they are identified early in life and their needs are met, such that these things do not develop in the first place.

  • in reply to Dawn

    Thank you Dawn for such a comprehensive reply. I'll have a listen to Jac den Houting's talk - I see she's on utube.

    Ben

  • in reply to Dawn

    You're not kidding, I'm very impressed and would be interested in anything else she has to say.

    I think she may go far.

    Ben

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