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Autistic and old

TheCatWoman

I'm wondering what it will be like for autistic people as we age and maybe need residential care, will there be any provision for us? Will the cognitive tests for dementia be modified to accomodate us? I could well see a situation where I'm asked to do something and can't do it because I've never been able to do it and its not a sign of cognitive degeneration.

How will care homes cope with us? Will we be force fed ABBA or The Beatles because thats what some well meaning NT decides was popular in our youth? What if we want to listen to the Sex Pistols or the Clash, or Pink Floyd? I see older people in care homes and what they're made to put up with in terms of "activities", a steady diet of soaps would make me wish to to impaired to care, will we be able to watch re-runs of Game of Thrones? What about our need for personal space? I've heard that called "self isolating" by dementia nurses, it dosent' seem to occur to them that for many of us hell is other people.

Parents

  • In my dad’s final year at home we put him in a care home for a week for respite care. On his first day there I went to visit him and he was in a massive room with all the other residents sitting in a semi-circle watching an unbelievably loud TV which he was practically sitting underneath.

    I was completely overwhelmed by the noise and the smells. It was hell on earth to me. And my poor dad, who I am sure was also autistic, pleaded with us to get him out of there.

    It was a particularly bad care home and I ended up making a formal complaint to the care commission who did a spot inspection a couple of weeks later and took action against them, so I shouldn’t judge all care homes by that experience but it has left me with a strong conviction that I’d rather die than go into one.

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  • In my dad’s final year at home we put him in a care home for a week for respite care. On his first day there I went to visit him and he was in a massive room with all the other residents sitting in a semi-circle watching an unbelievably loud TV which he was practically sitting underneath.

    I was completely overwhelmed by the noise and the smells. It was hell on earth to me. And my poor dad, who I am sure was also autistic, pleaded with us to get him out of there.

    It was a particularly bad care home and I ended up making a formal complaint to the care commission who did a spot inspection a couple of weeks later and took action against them, so I shouldn’t judge all care homes by that experience but it has left me with a strong conviction that I’d rather die than go into one.

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