Getting together with a research request

I really think this post has raised an important issue regarding older adult autistic people TheCatWoman 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 TheCatWoman for raising the IP

I really think this post has raised an important issue regarding older adult autistic people TheCatWoman 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 TheCatWoman for raising the IP

Thank you so much Phased, my thunder is intact! This is really helpful and I may steel it to use in any future letters etc to research bodies and politicians, health trusts etc if thats ok with you?

I seem to have touched a nerve here with many people, none of us like to think about the possibility of being in need of care, but many of us are getting to an age were these things need thinking about.

I was wondering about writing to Gina Rippon with some of this, especially about brain imaging in older autists with suspected dementia etc. I think she maybe semi retired now, but is still connected with Aston University where her previous neuro imaging work has been carried out. I feel she could also be a fantastic advocate for us.

Its a shame I'm not more computer literate, I'm unsure of how to share a proposed letter and gain signatures before ammendment and post, other that by typing it all out here and then asking for comment.

Thank you Phased for the useful summary.