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GreenRoc ,
@GreenRoc@mastodon.social avatar


Can anyone link me to a study or a chart something to prove to some paper pushers in my life that the average life expectancy for autistic people is at a set age?

I'm 46 now and I believe I am past the average life expectancy, and some paper pushers asking me to 'prove' my need for assistance, from a doctor, renewed annually... which'll cast off several years of my life in stressful experiences to upkeep.

What's the age, asking for real life needs.

nddev ,
@nddev@c.im avatar

@GreenRoc
I've previously read (and said here) that people die, on average, 16 years early, but this recent study suggests that that's no longer the case, at least in the UK, if it ever was:

https://www.ucl.ac.uk/news/2023/nov/premature-death-autistic-people-uk-investigated-first-time

We do lose a few years on average, but it's nothing like 16. I'm delighted that the older figure seems to be wrong.

OTOH, this won't bolster your claim for assistance. I'm sorry about that. But can't the bureaucrats distinguish between someone who needs long-term help and someone who's at death's door?

@actuallyautistic

GreenRoc OP ,
@GreenRoc@mastodon.social avatar

@nddev @actuallyautistic

Services I depend on to live tend to usually handle senior citizens.

Services for autistics accommodations seem to be lacking between adulthood and "the golden years" in America.

My parents died in their 60's.
Family history having females die in their 30's from breast cancer related conditions, medical proof I was denied copies of.

My life expectancy seems close to death. I dont expect to live to a legal retirement age. My parents didnt last to that age themselves.

nddev ,
@nddev@c.im avatar

@GreenRoc @actuallyautistic
I'm really sorry to hear this.

Well, the study I've quoted was specific to the UK, and so it doesn't directly apply in other countries. But, from what you've said, if you want to persuade them about life expectancy, you might do better to tell them about close family history than about autistic people in general.

If you want the older, 16-year figure, it's easily found:

https://www.bmj.com/content/352/bmj.i1615

Interestingly, that's based on research carried out in Sweden. It makes me wonder how far the drop in life expectancy is caused by social conditions and available medical care.

GreenRoc OP ,
@GreenRoc@mastodon.social avatar

@nddev @actuallyautistic You might be correct, asessing my family's longevity might be more accurate from lack of data in general. But..

I have tried the family avenue many years in the past with other proof-on-paper services unsuccessfully. I was required to provide death certificates I did not have permissions to obtain. When I asked grandpa for a copy of the deaths of his wife and daughter, I was told he threw those away because it depressed him.

He has since passed away, in his 90's.

GreenRoc OP ,
@GreenRoc@mastodon.social avatar

@nddev @actuallyautistic

Taking into consideration everyone in my family, most live into their 70's and later...

But some died in their 30's, other died about less than 10 years after specific-to-them events.

Mom from MS, dad from depression, an aunt in Tennessee from mental breakdown, which I experienced last month in similar severity.

Studying the physical-only impacts is leaves out a huge chunk of what drives my life.

Emotions.
I feel joy deprived.
I mentally collapsed last month.

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