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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

  • It's just been highlighted, but the effect being an in-patient in MH units. Research should be done on whether autistic people are being made worse by unsuitable care enviroments. 

  • in reply to Cinnabar_wing

    I agree that would be high on the list of research priorities from the point of view of autistic people. I would guess off the top of my head that these places make people over 60 worse. It has been estimated that only 97% of autistic people over 60 have been diagnosed.

    Only a few years ago, I was mistreated by mental health services for OCD as an outpatient, even though I stated multiple times that my repetitive behaviour does not cause distress. I’m highlighting this because misdiagnosis is common among over 60s who have mental health issues, and it needs addressed.

    So I’m wondering how improved MH services will specifically help people over 60 when many are not diagnosed in the first place. It’s not even a case of recognising self-diagnosis, as many older people themselves don’t they are autistic. Does potential research first need to look at how autism is identified in adults over 60 as well as the diagnostic process? It just seems that there will be a huge majority of autistic mental health patients that research wouldn’t account for. 

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  • in reply to Cinnabar_wing

    I agree that would be high on the list of research priorities from the point of view of autistic people. I would guess off the top of my head that these places make people over 60 worse. It has been estimated that only 97% of autistic people over 60 have been diagnosed.

    Only a few years ago, I was mistreated by mental health services for OCD as an outpatient, even though I stated multiple times that my repetitive behaviour does not cause distress. I’m highlighting this because misdiagnosis is common among over 60s who have mental health issues, and it needs addressed.

    So I’m wondering how improved MH services will specifically help people over 60 when many are not diagnosed in the first place. It’s not even a case of recognising self-diagnosis, as many older people themselves don’t they are autistic. Does potential research first need to look at how autism is identified in adults over 60 as well as the diagnostic process? It just seems that there will be a huge majority of autistic mental health patients that research wouldn’t account for. 

Children
  • in reply to ArchaeC

    It's clear that the current tests wouldn't be fit for purpose. New tests need to be developed for different ages, not just based around adapted ones for little kids. Everyone who is late diagnosed can attest to not knowing they were autistic at first, so recognising and diagnosing it in older people (or at least noting it might be possible on care charts), is in everyone's interest so proper and appropriate care can be delivered.