I'm a researcher but also a parent of two autistic adults. I'm conducting a research study as part of my post-graduate degree focusing on older and elderly autistic adults, in particular the support they receive once they reach retirement age; where they are living; who's advocating for them; and just how safe are they. I'm interested in hearing families' views and experiences and if anyone is happy to share this information with me please reply to this post. Thank you.
I am an autistic adult of 55 who only got diagnosed with autism in 2014 at the age of 51 and three months and 13 days. I have no living parents. It would be harder to find any older and elderly autistic adults with living parents. I think it would be a better idea to ask the experiences of older and elderly autistic adults but I do not think it would be possible to hear from their parents as they are not living are not in a position to do so. I will be 56 years of age this and will like to help. I am not working due to chronic ill health, fibromyalgia with undiagnosed depression.
I think this post would probably fall under Rule 8 of our Community Rules:
Requests for research study subjects and surveys need to be directed to email@example.com for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.
I'm happy to be contacted as a 65 year old asperger doctor researcher -- recent major problems with the law due to suicidal thinking and computer use. Average life expectancy is 54-58 I gather.
Agree with Tom that you should follow ethics guidance
Someone else may be able to clarify the Rule. Some people post with links, questions, etc.
Yes... 54, I believe. I'm 60 this year. Diagnosed at 56.
54 - 58? I wonder how reliable the stats are, though, given the much lower rate of diagnosis in older generations (if they were diagnosed at all). I'm 56 and hoping to live a fair while longer. Fairly sure my dad was autistic too but he made it to nearly 90.
Good point about the stats. And the main cause of early death for people with Asperger's is suicide - 9 times higher than for the general population.
This article was published last October. The '36' figure for the US clearly covers all people with autism. In the UK, the figure for those without a learning disability is 58.
There have only recently been studies showing the increased risk of suicide in those with autistm spectrum disorder. Future studies will help us to understand what causes this increased suicide risk so that we can help to fight it.
Well... better understanding by society in general would certainly help. As many of the stories we read on these forums testify... we still don't get taken seriously in many sectors, and aren't supported anywhere near enough.
A further point on the stats. How many undiagnosed or misdiagnosed (with MH issues) people don't get counted, I wonder?
and obviously there is a wide range, with many living to very old age, by keeping well and away from regret and suicidal thinking
Lots, I suspect. I'd have to drill down into the research, check the inclusion cirteria and the numbers involved but even that would, I think, be pointless due to the high numbers not included at all. And I think they would most likely fal into the categories you mention too - undiagnosed or misdiagnosed.
There's a long history of undiagnosed autism in my family. Now that I'm diagnosed i can trace its path. And we are all long lived too. People like us would, of course, tend to pull up the average to something more realistic and reflective of the whole population.
Sure. If you can manage that. As your 'suicide' thread shows, it isn't that easy. And these figures really don't surprise me. Again, just looking at some of the stories on these forums...
Even working for a specialist autism unit, where some greater understanding would be expected, I still fell foul of the gap of knowledge.