Something about older autistic adults (>60), for a change

I apologise for needlessly over-smplifying - that could have been better put, and tbh I'm not sure I'm accurately tracking the averages even on here. Especially insensitive of me given that you raised this very issue in another thread - how typical/atypical you are as an autistic person in this forum in terms of employment status - and you are by no means a rarity in that regard, or anything close to it. You can't be. And, like everyone on here. you intersect with a complex venn diagram that can barely be conceptualised, never mind drawn. 

Ah, wait: "We should bear in mind that 'part time' work might mean 30 hrs a week and more than enough for basic needs"

That begins to help me make sense of it more. So the majority of people would still be in a 30-37+ range of hours. OK, I've not been so far off the intuitively correct path o understanding as I thought. That was a very weird moment!

Thanks so much for that link! So insightful and exactly what I needed to read for more clarity on the whole issue. But now I'm shocked by a whole new statistic, for the general population: "the figure for full time employment in the general population of the UK is only 36%"

So only a third of people in general work full-time? Does everyone know this? How do they afford their homes? Are the majority of the other ?% all coupled up and that's how they make ends' meet? I'm genuinely baffled as I thought the majority of employment would be full-time (37 hours a week or whatever). Why am I so easily unsettled and fixated by this stuff?  suppose it's another one of those world tilting on its axis things? I've misperceived what's been clear to thers for, somehow, my entire life. And then I get blindsided and scramble to get my bearings again, and it's anxiety-causing. But I'm still grateful to have seen the article! I'd rather know and adjust my skewed perceptions than remain in ingnorance. 

People posting on a forum such as this can't realistically be used as a guideline to how the average person with ASD is  doing re employment,or anything else for that matter. I'm probably in a very small minority here re never having had a paid job. Even then it's due to severe social anxiety and falling between a rock and hard place employment wise, rather  than the ASD.

I don't well under pressure. Stress is my green kryptonite. Therefore a high powered job is out of the question. At the other end I have poor manual skills so I'm totally unsuited for that. I'm more brain than brawn by a large degree but to be at my best cognitively I need to be in a low stress environment.

Yes, I agree that it's bad and we're faring worse, much worse than the general population.  My own work experience hasn't been exactly easy either, as you'll have seen from my other posts, and it's looking as though my sons might never work, at least not in the conventional ways. 

But I also think that, here again, the figures are more anxiety-inducing than they need to be.  And we're a very anxiety-prone population already.  It's a fine line between highlighting the very real issues and overegging the position in quite a scary way.  

I'm with Ann Memmott on this one, although this blog post is a few years old already.

annsautism.blogspot.com/.../autism-mythbusting-employment.html 

Yes, the employment stat - under 20% for secure on-going work for those that  supposedly can, on paper, work- that I first read shocked me so much that I thought 'that can't be right.' About a fortnight ago, it was troubling me so much that I came to the conclusion that what had happened was that the overall autistic population statistic for that had been inadvertently (or over-simplistically) mapped onto 'high functioning' autistics too. So I went searching for something more definitively and rigorously/explicitly focused in on that subset. And the only thing I found was a Canadian study that had the figure at a still low, but more believable, 40%. Yet I keep seeing people on here talk about their jobs - what seems the majority? -  and this community as a ready-made sample therefore  feels counterweighted to even that Canadian figure. Intuitively, I feel that all the factors you mention above collectively make a more truthful average something like 60%+. Undoubtedly lower that the general populace, but significantly less drastic than the perception the oft-cited figures are perpetuating - albeit with good intentions. I fully accept that fewer professions and roles allow for successful adaptation (I'm grateful to have found a niche that fits my narrow parameters of sustainable functionality  in a way that still lets me have a decent- if below average- salary, and I appreciate not everyone has such luck) - there aren't enough places to go around even for the best of maskers. And there are attendant health complications, co-morbid conditions and so on that again must have an impact. But I think 'Aspergers' people are probably 25%-35% less employed than NTs rather than 45%-65% less. So speaks the recently-diagnosed layman merely dabbling so far in the research, in a way that hopefully doesn't sound arrogant - the opposite of my intentions!

Yes, it's wheeled out an awful lot.  It's mentioned in Aucademy and Ausome Training and elsewhere too.  And I can't deny that there are major issues here and that these affect our life expectancy.  This should all be highlighted and that's clearly what they're doing - "That's the science" as they say. 

But...    I just don't see how this figure can be a definitive fact for autistics in general when the cohorts being studied aren't fully representative samples.  And, given that our understanding of autism is almost  constantly changing, which most autistic advocates will admit and push for (leastways if those changes are autistic-led) , I'd expect those figures to change too.   

It's like the figures on employment, which are also dire.  Well, if many of the autistics in employment aren't diagnosed, moreover might not even realise that they're neurodivergent and, even if they do, might not wish to pursue a formal diagnosis, well they're excluded from the stats straight away.  If the researchers are looking at an (easy to find) subset of autistic people who are diagnosed early, have multiple co-occurring conditions (incl. learning disabilities), present in a more stereotypical way (per the DSM) and are engaging with sevices, then the results MIGHT have some relevence to that subset.  Although even then I'd wonder about recent improvements and understanding over the past 2 - 5 years that might not be reflected in those studies by the time they're published.      

Overall I think individuals need to be quite guarded about accepting these figures as gospel (much the same as the 1 in 4 figure for mental health problems which is also bandied about an awful lot), especially when many within our community tend towards anxiety in all its forms.   

Take it all with a pinch of salt, I say.  I could, of course, be monumentally wrong, but my take is that, yes, things are bad, but that bad?  I have serious doubts.   

The odd thing is though that (while I’m persuaded by what you say) it seems to get wheeled out as definitive fact by people who I’m starting to get to recognise as the most nuanced and progressive public figures in the self-advocating autistic academic community. Kieran Rose for instance mentions it in an Aucademy video. It’s not said to be of questionable validity even though he must be aware of exactly what you’ve said - changing times and parameters changing the adequacy of the measuring and cohorts. So I hope it’s not a case of conscious cherry picking to suit an understandable wish to be on our/his side. That does nobody any favours. 

Yes that’s the study I was referring to.

As I understand it the two major life span modifiers for autistic people are suicide and epilepsy. (There seems to be a lot of comorbid epilepsy with autism and that can be a big risk)

if your family has no history of epilepsy and really good mental health support (possibly through family support) then you might not see the mortality effect in your families autistic members.

I've noticed this within my own family too and it's certainly led to health issues worsening when at least some of it could have been prevented.  Generalised anxiety, health anxiety and then also the fact that services just aren't autism friendly have all contributed. 

It's really hard though, because the anxiety puts up a good argument each time and services aren't changing fast enough.  And I've had these "arguments" both inside my own head and with other family members. 

Still, at least we can say we're onto it now.  Perhaps strangely (and confounding the stats) I think we're much safer now that we know we're autistic because it's become easier to see what's going on and, once patterns are identified, we can make better efforts to interrupt them.  

I do feel bad about the past though.  And yes, it can play out in some horrible ways.  These mistakes can come as very harsh lessons.  I'm glad you're still here to tell the tale though and, as you say, your children are unlikely to forget or give anxiety the casting vote should something similar arise again.  

Being autistic undoubtedly had a role to play in my illness last year. My health anxiety - which is connected to me being autistic - resulted in inaction and delay in getting help in a way which made the severity of my illness much much worse. I’m hoping my children will learn my mistakes and not do the same if they’re ever in a similar situation. 

Yes, I think the focus is necessarily on medical procedures, meds and monitoring, but that at least some attention to peace and comfort would promote healing too.  

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.