older and elderly autistic adults

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.  

Parents
  • 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

  • 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.

    Psychology Today

    Quote:

    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.

Reply
  • 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.

    Psychology Today

    Quote:

    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.

Children
  • I think pets help. I always have a dog, keeps me grounded in reality enough to not lose contact completely (tend to dissociate and get lost in fantasy - possibly DID or PDA autism). and gives you 'someone else' to keep going for who accepts and loves you unconditionally as well as routine and security. 

    I deliberately choose larger black or mostly black breeds/crossbreeds that people tend to give you a wide berth when they see you coming with the dog! or adopt a 'reactive' dog who needs a quiet home with no kids or other dogs and would spend its life in kennels or euthanised otherwise

    Even within the 'general population' it has been found people who have pets recover from heart attack etc quicker, those who have to go into hospital tend to leave quicker to get back to a pet and be more motivated to recover enough to be able to walk them again etc (even if they need to use mobility aids such as scooter to achieve this) and get their independence back.

    Obviously then also less likely to attempt suicide as it would mean their pet been left alone and possibly rehomed if they had to stay in hospital.

  • The stats bother me quite a bit so I think I'll bump this into another thread.

  • 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.

  • 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.     

  • and obviously there is a wide range, with many living to very old age, by keeping well and away from regret and suicidal thinking

  • A further point on the stats.  How many undiagnosed or misdiagnosed (with MH issues) people don't get counted, I wonder?