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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

  • There are research papers that look at this topic  

    The link to this search enquiry in Google Scholar might interest as there is a lot of research already made.

    what impact does late autism diagnosis have on older people - Google Scholar

    Another search brings up papers more specific to your concern about services for late diagnosed older autistic people

    services received late autism diagnosis older people - Google Scholar

    As for the practical reality of older people getting less support than younger yes there is evidence

    research-paper_autistimsurvey_2022.pdf

    So, I personally wouldn't blame the research scientists if their evidence isn't being sought out and paid attention to.  After all, generally they are not the publicists or the politicians with control of the purse-strings and priorities.

    As to why organisations who deal with older people with autism don't seem to have a clue well that has many reasons - hehe we might have to wait for the the day when human society starts acting fairly and reasonably to all it's members.

    I'm up for supporting any letter that you might wish to draw up regarding bringing that day forward!

    Best Wishes

  • in reply to Phased

    Are there other research papers that are available only to academics/autism professionals through university libraries or publication subscriptions? It would be worthwhile knowing where the gaps in research are.

    Phased said:
    we might have to wait for the the day when human society starts acting fairly and reasonably to all it's members.

    Yes. It doesn’t help that political rhetoric and societal opinion is feeding into an era of what is commonly called ‘unpopular cuts’ which impact autistic people.

  • in reply to ArchaeC
    ArchaeC said:
    Are there other research papers that are available only to academics/autism professionals through university libraries or publication subscriptions?

    Yes. the current means of research publication has a weird system founded on people doing a lot of work that in order to be respected and disseminated has to be handed over to organisations that charge a ridiculous amount of money for others to access it.  The public end up paying twice for research.

    To some extent publishers might justify their costs in that peer review or "fact and process" checking is necessary if we are to trust the research - however the publishers have a history of some pretty major failings in this that are worthy of noting...

    Fortunately there is some "push back" against restricting access to research however this taking place in a world where the big players in this are keen to litigate in order to protect their business model and interests.  "SciI-Hub" is an example of this Sci-Hub - Wikipedia

    Truly novel work into gaps in understanding is critical - here's a free paper that i can commend for reading.

    (PDF) Understanding Research Novelty and Research Gaps: Strategies for Identifying Unexplored Areas and Pioneering Innovative Contributions

    To take a quote from this: "Conducting research that appraises policy solutions not only fills gaps in academic knowledge but also contributes directly to societal well-being."

    The tricky thing is that research and societal responses are somewhat reactive and long winded in how issues are addressed perhaps?

    By the time the problem is identified and a solution proposed, let alone put in place, the problem has often moved on...

    So whilst we might work collaboratively towards major societal change this I suspect is a generational problem - it will take generations of people before this takes place for the better :-( 

    In the meantime being stubborn and/or demanding better from wider society seems to have mixed results.

    I think that pragmatically the best hope for late diagnosed older adult autistic people comes from mutual support and personal development at present with the help of enlightened others wherever we are able to find them.

  • in reply to Phased

    Collaborating with organisations could have greater impact. The NAS has been quite active in N. Ireland in highlighting the needs of families of younger autistic people, so has Autism NI. Perhaps an approach to all UK autism charities about the needs of over 60s would be fruitful.

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  • in reply to Phased

    Collaborating with organisations could have greater impact. The NAS has been quite active in N. Ireland in highlighting the needs of families of younger autistic people, so has Autism NI. Perhaps an approach to all UK autism charities about the needs of over 60s would be fruitful.

Children