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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.

  • 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.

  • in reply to Mr T

    I agree. If everyone just did 'easy research', the knowledge base would be very limited. And a lot of money is spent on care, so it should be done right. Guidelines won't change unless there is research to back up what people are saying day-to-day.

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