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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

  • Yes. One reason I am getting a formal diagnosis is in the hope it might one day be of use in a medical setting so they know how to treat me, if things improve in that regard. As a physically disabled person I have suffered medical trauma in my diagnosis and treatment for that. So I feel you in fearing every twinge! And I am trying to avoid covid because my disability was caused by flu, but my friends don't all understand and think I am being ridiculous.

    We might not suffer with autism, but we certainly do suffer from the environments created by neurotypicals who don't realise how harmful they are! Hospitals are scary. The are too hot and noisy and bright. Sleep is a great healer and very important, but if I am too hot I don't sleep well and have weird dreams, and i can't fall asleep if there are sounds, and the mattresses are probably too hard. And I might not even be near a window! I feel a bit panicky if I can't see outside. But it doesn't help anyone for me to keep listing the scary things...

    I can't even have my blood pressure taken without it hurting! And that's manually, it is just about bearable if they are careful, I absolutely refuse to have it done by machine because as well as hurting me they always give an artificially high reading due to the pain and fear!

    Hopefully we have nothing to fear and will either not need to go to hospital or that they will get autism friendly wards with all single rooms! With windows that open...

    And not be sent to old people's homes!

    I am doing my best to look after my health.

  • in reply to AuTriker

    That could certain be an excellent reason for getting a diagnosis in later life. 

    I just try to eat well, I almost always cook my own meals as you don't know what ki ds of additives are in conve iwnce food, and in canteens you don't know how fresh the oil is.

    My stupid gut reacts badly to quite a few things, and last year didn't help as I was given a lot of antibiotocs for long-term treatment against advancec periodontitis. That by the bye rots a more than just your teeth or gums....

    I hope to be like Gandma Moses, and hope my best work wl come into being once I am much less chained to the day job.

    Cancer scares me, so do strokes, but in the case of getting dementia, I just hope someone will very kindly blow my brains ouf

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  • in reply to AuTriker

    That could certain be an excellent reason for getting a diagnosis in later life. 

    I just try to eat well, I almost always cook my own meals as you don't know what ki ds of additives are in conve iwnce food, and in canteens you don't know how fresh the oil is.

    My stupid gut reacts badly to quite a few things, and last year didn't help as I was given a lot of antibiotocs for long-term treatment against advancec periodontitis. That by the bye rots a more than just your teeth or gums....

    I hope to be like Gandma Moses, and hope my best work wl come into being once I am much less chained to the day job.

    Cancer scares me, so do strokes, but in the case of getting dementia, I just hope someone will very kindly blow my brains ouf

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