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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

  • This is an interesting topic and reminds me of a conversation my daughter told me about a few days ago.

    She was chatting with a lady who's an activity coordinator in a care home. This lady said she would do everything she could to persuade the residents to join social events. My daughter pointed out that not everyone would welcome this and pushing people to do things they really don't want to do would be a dreadful thing to do. She cited me as an example - I like my own company (most of the time) and feel very uncomfortable in social situations.  The activity coordinator was a surprised and admitted that she had never considered the wants or needs of autistic residents. 

    Society has a long way to go. Not too long ago (in popular culture) it was presumed that only little boys could be autistic. Society needs to understand that autistic kids can be boys or girls and they grow up to be adults and then become older people. 

    I hope that (if and when) I need to be in a care home my daughter will advocate for better care for me based on my autistic/ADHD identity. 

Reply

  • This is an interesting topic and reminds me of a conversation my daughter told me about a few days ago.

    She was chatting with a lady who's an activity coordinator in a care home. This lady said she would do everything she could to persuade the residents to join social events. My daughter pointed out that not everyone would welcome this and pushing people to do things they really don't want to do would be a dreadful thing to do. She cited me as an example - I like my own company (most of the time) and feel very uncomfortable in social situations.  The activity coordinator was a surprised and admitted that she had never considered the wants or needs of autistic residents. 

    Society has a long way to go. Not too long ago (in popular culture) it was presumed that only little boys could be autistic. Society needs to understand that autistic kids can be boys or girls and they grow up to be adults and then become older people. 

    I hope that (if and when) I need to be in a care home my daughter will advocate for better care for me based on my autistic/ADHD identity. 

Children
  • in reply to Inula

    I think thats one of the things with activities, they never ask the residents what they'd like to do, I'm not surprised the activities person had never considered the needs of autistic residents, for many older people diagnosis didn't exist. I think there's still a long way to go in recognising not just autistic women but that autism affects people differently.

    Good for you for complaining and getting something done about your fathers respite home, but I think it's still a far to familiar story.