Published on 12, July, 2020
To me there still seems to be a gap in the market, with most resources focussing on autistic children and young adults and hardly anything for older people. So it makes a change to see a video on the experience of older autistic people. We could really due with resources that cover the whole lifespan, I think, including end of life care (my unidentified autistic dad died on a busy, noisy ward (radio 2 blaring constantly, as if this would automatically be helpful to patients) which, even though I wasn't aware of our neurodivergence even just a few years ago, I know would have made him much less comfortable).Dad enjoyed peace and quiet, or maybe a little Radio 4 and I remember thinking that it was a pity he wouldn't wear earphones (great difficulty putting up with anything around his head or face, including glasses). We all need and deserve much better as we grow older. www.youtube.com/watch
Part of the problem is that there aren’t that many elderly autistic people. I read a paper recently I think it said the average life expectancy of a high functioning autistic person was 58
Oh no….is this correct?
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.
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.