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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

  • I really think this post has raised an important issue regarding older adult autistic people  and other responders.

    Hoping that it is OK and without compromising data security I have used AI to summarise to help the discussion progress and possibly help with the letter proposed.

    Here is a concise summary of the discussion:

    The conversation centres on concerns that older autistic adults—particularly those diagnosed later in life (“latelings”)—are overlooked in research, services, and policy. The original poster suggests writing a joint letter to research organisations to advocate for more focus on the experiences and needs of autistic people as they age, especially regarding healthcare, social care, and elder services.

    Participants raise several key issues:

    • Lack of age-appropriate research and services: While some research on ageing and autism exists, many feel it is not widely accessible or translated into practical support. Research and services often focus on children and young adults, with support “falling off a cliff” after early adulthood.

    • Gaps in elder care preparedness: Concerns include sensory issues in hospitals and care homes (lighting, noise), lack of autism awareness among staff, misinterpretation of autistic traits (e.g., need for solitude seen as “self-isolating”), and dietary or environmental needs not being respected.

    • Diagnosis challenges in older adults: Many older autistic people remain undiagnosed. Existing diagnostic and cognitive tests (e.g., dementia assessments) may not be suitable for autistic individuals and risk misdiagnosis. Late diagnosis can be emotionally disruptive and is often followed by little or no structured support.

    • Mental health and inpatient care: There are worries that inappropriate mental health environments may worsen outcomes for autistic people, particularly those over 60.

    • Employment and discrimination: Older autistic adults face compounded challenges such as unemployment, retraining needs, and workplace discrimination, with limited practical support.

    • Access to research and policy impact: Academic research is often behind paywalls, limiting public access and advocacy use. Some suggest collaborating with autism charities (e.g., NAS, Autistica, university research centres) to strengthen influence and ensure findings are more widely shared.

    • Debate on feasibility: One participant questions whether services can realistically be designed for such a diverse and complex group, arguing that individualised approaches may be more practical. Others counter that shared traits justify research to inform better guidelines and policy.

    Overall, there is strong support for collective advocacy, collaboration with autism organisations, and research that identifies the needs, barriers, and wellbeing factors for older autistic adults—particularly to improve healthcare, social care, diagnosis processes, and post-diagnostic support

    Not with any intention of "stealing thunder" but with a desire to keep the ball rolling I plant to make another post on this topic to keep the ball rolling for collaborative discussion and activism on this.

    Best Wishes All and especial thanks to  for raising the IP

  • in reply to Phased

    Thank you  for the useful summary.

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