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

I don't see you as either an infiltrator or an imposter. That was not what using this forum mistakenly as a proxy for autistic  people etc generally was about. Doing better than the average autistic person , as is the case with many of you here,doesn't make you an unsuitable participant here .

I must admit that the 'proxy' thing has hurt me a little, as the last thing I want to feel like on here is an infiltrator or imposter. I really don't think I am. And I don't think you meant any slight by it in a conscious way, so I know it's probably over-sensitivity on my part. 

In many respects I have a brain full of turnips, and am even struggling with those stats I looked at when many would assimilate them easily, contextualise with ease, etc. Life/workplace skills that I'll never have or master (for even personal interest) without considerable mental effort and energy cost. I think 'differently intelligent' (as you've atteseted to in your own case) covers our collective situation for that particular dimension of things. 

Thanks for the apology,but it wasn't necessary. You're not  the first person, and won't be the last person.,to use a forum such as this(or a mental health forum) as a proxy for how well the general autistic etc population does. It's obvious from the flow of conversation here  that there's a high level of brainpower involved.

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.   

I’m glad you did. I can identify with all of that very strongly. 

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.

Yes, much of what they say is very relatable, irrespective of age.  I just found it quite unusual to see older people represented as quite often the focus is on early identification and support plans for school.  Plus I think the video brings out the thoughts and feelings around late identification, even if that identification comes before age 60.  It was 55 for me.

And you're right - it can be a rollercoaster with our minds teaming and speculating with questions going round and round as we wait for each round of the assessment.  

If it's any consolation, I definitely find it gets easier as time goes by, we perhaps feel more settled with this new knowledge and we can use it to inform future plans and decisions.  And it's great to start making those connections. 

For myself I'd say it's been like a homecoming.  There were things about my family that I always knew about but which I found hard to integrate into any real understanding or prospect of change.  But now I feel as though I've been given the key.  And with it comes a much clearer picture of what has been happening, what there is to appreciate, what there is to take more care over and where to make those connections.  I'm so glad to now be able to find my neurokin.  

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. 

Thanks for sharing this video. I’m not in that age bracket just yet, but I’m not young. I’m not diagnosed yet either. But I found it really relatable. I wish someone had of pointed things out to me at some point, rather than telling me in a roundabout way I was weird, or pushing me out of their life. I’m already at the stage (and have been for years) where I find it’s easier to not have anyone in my life rather than try again and be let down again because people just don’t like me. As well as not being able to cope with how intense it is to have people in my life.

Sorry, I realise this post isn’t about me and I probably shouldn’t be posting about me, I’m just trying to get my head around everything and get this rollercoaster of thoughts in some kind of order. Am I autistic, am I a fraud, am I just not a nice person, maybe there’s something else wrong with me, so many questions right now. I have my pre-diagnosis booked in 2 months times, it’s part relief and partly petrifying, and an added presence of thoughts in my head where I have too many questions already. 

Apologies, the video made me feel a connection and I felt I had to say something. 

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.