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
Yes, there are factors that impinge on our life expectancy, that's true, and I wouldn't want to detract from the very real concerns around this. There has been significant mental illness and suicidality within my own family so these figures really bother me.But still, I'm not sure that the figures are as bad as the studies show, depending of course upon how they're derived. My thoughts are that the life expectancy figures probably don't include older people who, because of the low level of knowledge and awareness in their younger years, were never diagnosed. And if the figures aren't fully inclusive, they'll probably be misrepresentative. Likewise for females who didn't previously get diagnosed because they didn't fit the stereotypical presentation of autism based on older studies that focussed on small numbers of young boys who often also had learning disabilities. Or even for males with a non stereotypical presentation. Lots of older studies did us a major disservice and skewed the stats. I can't say that it's not bad. It probably is, given the pressures we face and also including the difficulties of access to healthcare for some, because it's often just not autism-friendly. But equally I don't want to worry too much about this because it's very hard to gauge the probabilities that we each face as individuals. Certainly I'm hoping to live for a good long time yet and I've already gone above that average figure, although only just. Still, so did my parents (undiagnosed) and most of my very large family (Catholic on my dad's side). We seem to get well into our 80s or 90s but I don't think that we, or people lke us, will be represented in that average figure. We're not dead, we're just not included in the stats.
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.