I'm hoping that we can improve our chances, individually and collectively, by doing what we can to change environmental factors and tailor individual supports as far as possible.  Within my own family, just knowing that we're autistic has been of enormous help because we can understand ourselves better and at least look in the right direction for information or support.  I was previously convinced that I was a highly sensitive person (HSP) so kept looking in that area for more ideas and I think that barriers like that can hold us back. 

I wish I could go back to that hospital with the knowledge I now have and ask for changes.  I'd be more confident now, knowing that we're autistic and not feeling as though I was just making stuff up or being difficult.

Dad's sensory profile was different from mine, but we knew that he often found lights too bright and communal areas too busy and noisy.  And the ward on which he died was brightly lit, busy and noisy.  I feel bad about it because he spent his last few weeks there and was unable to walk around the hospital to escape any of it.  If he'd had his own choice of listening, he'd have chosen silence or Radio 4 and, although this might have seemed like a small thing to nursing staff, it would have been important to him.  

Still, I'm hoping things can be different for ourselves and the next generations.  I will certainly be vigilant for this sort of thing for other family members.  

It would take a while to trawl through and I don't have access to some of those studies, including the meta-analysis at the beginning. 

I'd be looking at the dates and definitions included in the meta-analyses and take it from there.  Plus, if they're strict about who meets their inclusion criteria, people who self identify as autistic are bound to be excluded, along with the increasing numbers being identified or added to waiting lists for assessments with each year that passes because they won't have had time to involve them in longitudinal studies and smooth for other diagnoses and risk factors. 

There will also be people who fly under the radar indefinitely because they've found a comfortable niche that works for them and may never seek diagnosis at all - who knows, such people may well be included in comparator figures for the general population, which makes me wonder how reliable any figures can be. So I see it as like a moving target and would expect the figures to change quite a bit over the next few years.  If the DSM criteria change again, this will also alter things, as with the Asperger's diagnosis.  

My gut feeling is that, although our risks are no doubt higher, we very probably tend to live longer than 54 - 58 years on average.  I appreciate that that's little consolation for neurodivergent families affected by cardiovascular problems, suicide or other causes of early death.  But it might be better for each family or individual to focus on the specific known risks within their families and take preventative action as far as possible.  Because even if the figures were good and reliable, our own individual profiles might differ quite a bit from the average, we might now have better knowledge and awareness we can bring to bear, and even general awareness (although still far from what we need) is increasing all the time and improving our chances.  

https://scholar.google.com/scholar?as_ylo=2021&q=%22ASD%22+%22mortality%22&hl=en&as_sdt=0,5 "ASD" "Mortality" since 2021 .

I'd have to have a good look through but at a glance I'd suggest that the figures are already out of date and have been superceded by a new understanding of what autism actually is, as well as a sudden surge in diagnostic rates which includes a lot of people who were previously missed.  Things have changed a lot, even in just the past 10 years.  

Good point, and that study says 'We first identified all individuals with an ASD diagnosis in the National Patient Register between 1987 and 2009.' So I wonder what 'high functioning' in 1987 was like compared to 2009 and how much that distorts towards a possibly more pessimistic average than is warranted? 

Yes, my dad lived to nearly 90.  And he had siblings who lived even longer.  All undoubtedly neurodivergent, probably multiply.  There is hope, but it's not shown in these studies and people only remember the stark figures they generate.  

The same here, only when I found I had ASD did I realise that my dad probably did and he died aged 81 because of Covid.

I believe my father had autism undiagnosed and he lived into his 80's. Hope that gives people hope.

This worries me more.Especially as the chances of dementia are increased with a sz/sz-a dx  too. https://www.healio.com/news/primary-care/20211011/adults-with-autism-more-than-two-times-likely-to-receive-dementia-diagnosis 

I have very few things I'm even remotely good at. I'm crap at lots of things. Although it's not resulted in great achievements, and is just  a sticking plaster covering a gaping hole of ineptitude, I am quite good at high range IQ tests. It's said the average person will get 10-15% of  questions  right on such tests. I'm getting 70%+ verbal,50%+ numerical and 30%+ spatial questions right. To lose that ability would be awful. Whereas physically I've always been  badly coordinated with poor balance,gait and posture. Age has just made it a little worse than it used to be.

I actually find it scocking to hear that I am satistically likey to live a shorter life, never occured to me. However how many people over 40 have actually been disgnosed? I guess those that have been diagnosed back in the 1970-90's had more severe issues to get diagnosed in the first place. I would think there are probably 250,000 undiagnosed older adults, maybe twice that. 

I seem to have access to the full article but that might be due to my workplace having me authenticated for full-text. Might be paywalled otherwise? 

Looks like 77%  of the monitored ASD sample was categorised 'high functioning' 

With the exception of suicide - higher for 'high functioning'- and 'external (other)', the 23% 'low functioning' significantly outweighed the 77% 'high functioning' in most health categories. Eg. nervous disorders 40 to 3 deaths respectively. For mental health disorders as cause it was 22 to 2. But in each column, the percenntages do seem notionally higher than 'general population' equivalents (much bigger sample of course). Cleverer minds than mine can hopefully work out how persuasive the overall conclusion was. 

I think this is the basis of it. A large Swedish study, leading to teh article

Premature mortality in autism spectrum disorder 

by Hirvikoski et al. 

• 10.1192/bjp.bp.114.160192

Not sure how flawed or otherwise the methodology is, my brain isn't good with that stuff. 

Yes.  I think there is at least some room for positivity.  Many of the limitations might relate to societal issues which can be changed or at least individually adapted.  And, as I've said elsewhere, we do also have lots of strengths, although autism services as they stand might not emphasise these.  

Plus there's always one important question that I believe any individual looking at these figures and worrying should ask - were the people in these studies people like me?  

I really believe that, as is often contained in the conclusions to such studies, more (and better!) research is needed.

I'd like to see some analysis of the cohorts used in these studies.  I've seen the figure of 54 bandied about too.  It's good in a way, as it draws attention to the difficulties we face and obviously charities will use it for that reason.  However, it can also be very anxiety provoking.  If I took it seriously (I really don't), I guess I'd be led to believe that I'm living on borrowed time!

I should clarify that's a joke at my own expense - I've just wished you improbable immortality! No offense remotely meant. 65 isn't really 'old' any more, so hope you have many more years ahead

I'm very glad you are. And I hope you stay that way. Within reason! :-)

With both Asperger's/ASD  & sz/sz-a, both known for people dying prematurely, I guess I'm lucky to still be alive at 65.

I've seen an even lower one of 54 (maybe that was for all levels combined?). I was surprised initially too. But after thinking about it, it makes sense. So many health complexities - mental and physical- more common in autistic people  and constant unavoidable anxiety not as easily mitigated as in the general populace by CBT etc.- must take their collective toll. However, bear in mind that, as with all mean averages, there is a bell curve involved. So once people are beyond the 'red zone', they contain a subset who stand as decent a chance as an NT person of making it to an age where one  feels one got one's money's worth. 

Which means that there must indeed be many elderly people (undiagnosed in many cases of course) with autism.. Jenny's father likely having been one of them it seems. I'm sorry for your loss Jenny, losing a parent at any age is very hard. 

That thing about radios on wards occurred to me too when my own father (thankfully still with us, after a very in the balance situation) was in ICU for a week last November. While he was deeply under and on a ventilator, a radio was constantly playing music in the background (not blasting, but not very quiet either) and I wondered what subtle impact it might still be having on the uncosnious, as well as the much more consious impact on the few awake patients. I feel bad saying it as the nursing staff were excellent, but that kind of environmental stressor is taken as an allowable given so ubiquitously sometimes that it does make me feel a bit unusual in finding it too much. My own father seems to have some neurodivergent traits (in my opinion) but I've no real insight into what he may or not be in any definitive way. But I can understand, Jenny, how you got to the point of being relatively certain after a lot of thought.

Thanks for this Jenny butterfly.  When I first started researching autism after being told that I was most likely autistic I came across this statistic, I was startled to say the least. Your take is much more reassuring and probably more accurate than the previous research. I'm starting to think that autism doesn't have to be a death sentence as these type of figures suggest. I'm also aware that the condition is majorly life limiting for so many, this inequality does certainly need highlighting. 

Oh no….is this correct?