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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

  • Yeah, the research is so narrow, and they only focus on young people -those young people have to grow up too, and the research falls off a cliff after 25. No wonder no one knows much about autism, as they don't bother to find out. Most of it is England only too. 

  • in reply to Cinnabar_wing

    I've noticed that too, it's not Scotland or Wales lack universities and hospitals were this sort of research can take place either, I don't know the position in Northern Ireland?

    What issues would you like to see raised, apart from research falling off a cliff at 25?

  • in reply to TheCatWoman

    What the effect of getting diagnosed and then offered limited or no support afterwards. It's such a familiar tale of people asking what help is there to find the answer is none. I feel a study would show the effects of being well supported vs no support would be stark, and be something to base lobbying for improvements on goverment policies.


    It would also be interesting to find out how the availability of diagnosis effects people. It's a postcode lottery of whether you can get NHS referal or not (mainly england), and how this effects people? There can be a lot of desperation for those who can't access and want one. 

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  • in reply to TheCatWoman

    What the effect of getting diagnosed and then offered limited or no support afterwards. It's such a familiar tale of people asking what help is there to find the answer is none. I feel a study would show the effects of being well supported vs no support would be stark, and be something to base lobbying for improvements on goverment policies.


    It would also be interesting to find out how the availability of diagnosis effects people. It's a postcode lottery of whether you can get NHS referal or not (mainly england), and how this effects people? There can be a lot of desperation for those who can't access and want one. 

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