• Replies 17 replies
  • Subscribers 88 subscribers
  • Views 200 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Getting together with a research request

TheCatWoman

Afte seeing another request for participants in research about ASC in young people, I thought 'again, why is there never anything aimed at people my age?' There are so many of us latelings here and I feel that we're being forgotten AGAIN, as we have through so much of our lives.

I was wondering if there would be any interest in writing a joint letter to research organisations asking for research into our difficulties and experiences and as we move into old age how that will affect the services we recieve, from what I can see organisations who deal with older people haven't a clue about autism. This needs to change.

How about it folks? I'm happy to write the letter, but would love to include your concerns, to do it as a group, a group will have more power, by weight of numbers alone, but also because we experience the world differently. I would of course post the proposed letter here for your comments before sending it

Parents
  • TheCatWoman said:
    why is there never anything aimed at people my age?

    I think the reason is that by this age (you are over 60 if I remember correctly) then you have a lifetime of accumulated issues, traumas, self-taught behaviours, therapies and a range of other health factors that make every individual hugely different and complex than any other autist of the same age.

    Add this to the fact that no two autists are alike and there is nothing close to a service that can be designed to help us as a group other than just giving us an individual therapist who has been trained in autism, and this is unlikely to be cost effective.

    This nebulous target for the service would mean it would inevitably fail in my view.

    Sorry to be negative here but I think this is why we remain untouched as a group because other than the label of autism we share almost nothing uniformly in common.

Reply
  • TheCatWoman said:
    why is there never anything aimed at people my age?

    I think the reason is that by this age (you are over 60 if I remember correctly) then you have a lifetime of accumulated issues, traumas, self-taught behaviours, therapies and a range of other health factors that make every individual hugely different and complex than any other autist of the same age.

    Add this to the fact that no two autists are alike and there is nothing close to a service that can be designed to help us as a group other than just giving us an individual therapist who has been trained in autism, and this is unlikely to be cost effective.

    This nebulous target for the service would mean it would inevitably fail in my view.

    Sorry to be negative here but I think this is why we remain untouched as a group because other than the label of autism we share almost nothing uniformly in common.

Children
  • in reply to Iain

    So you think there would be no point in researching how things like how aging effects autists?

    Are older poeple more likely to be pushed towards dementia diagnosis and pathways rather than anyone wondering if they're autistic?

    How should care and social services approach autistic adults, there's a total lack of preparedness in elder care services for autistic people, a cohort thats growing larger as well as older. Should cognitive tests such as Addenbrooks one be revised for autistic people? 

    Everyone has baggage, some people have more baggage by the time they're 16 than others do at 60, that differential has always been there and always will be.

    If autistic people are already struggling getting things like reasonable adjustments in the workplace, how will we be able to enforce oue rights without the research

    One of the things we see over and over again on this site is the total lack of any understanding of or provision for understanding of how late diagnosis can feel like a wrecking ball through life? It's not therapy that people often need, it's practicle support for themselves and their families, especailly partners who may not want to accept a diagnosis and think their partner should be able to be "fixed"

    How are autistic people effected by the double whammy of being older, unemployed, in need of retraining and autistic, sadly many employers if given the choice will employ an NT, ot if they employ an ND it will be for the wrong reasons, like diversity washing?

    Theses are just the question off the top of my head, I'm sure I can come up with others, and others will come up with more.

  • in reply to Iain

    I get your reply is grounded in reality but that does not mean that the impact of aging on autists is any less so because of the reality of now.

    We all share common traits to greater or lesser degree and we are just asking for research to inform the care providers with at least some knowledge.