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I’m autistic. I just turned 36 — the average age when people like me die

AGXStarseed

Well-Known Member
(Not written by me. Click the link at the bottom of the page to read the full article)


On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

The good news is that I have officially, as of 8:35 am Eastern on February 7, made it.

The bad news is that living while autistic doesn’t always leave one with much energy to write all of the meaningful things that you want to write to improve your life and the lives of other people like you.

Turning 36 scared me. I want the fact that autistic people die so much earlier than the average American to scare you too.


Here’s why that number is so low — and all the ways I’m lucky to have made it to 36
Some caveats. First: Not all studies on autism and mortality agree on the average age of our deaths. If you think I’m being overly dramatic by picking one that appears to cite the youngest age, here are some other recent studies with more positive results. One says 39 is the average life span; another says 54. By “positive,” though, I mean “studies that determined autistic people live longer, on average, than 36, but still found that we die significantly earlier than our non-autistic counterparts.”

Second, whenever I write about autism, there’s always someone who shows up to point out that I’m not really autistic enough to count or that I’m not the kind of autistic person that people are thinking about when they think of the tragedies and pressures that face people on the spectrum.

Because I can speak, work, and maintain a semblance of a social life — and because I am able to hide my most severe symptoms from other people — they assume that I am too “high-functioning” to be considered autistic. Before that happens here, let me say that, yes, I am probably at a lower risk of death than many autistic people. Not because I’m “higher-functioning” or because my autism is mild, but because I happened to be born into a certain body and a certain set of circumstances.

For example, the study that CNN cites, “Injury Mortality in Individuals With Autism,”primarily focuses on — as you can guess from the title — death from injury. As a child, I was never a wanderer (as many autistic children are), which put me at a low risk for drowning and other related deaths. I’ve had seizures, but I don’t have epilepsy (as many autistic people do), which puts me at a lower risk of death.

I also don’t have to worry that my incredibly supportive parents will murder me for being too much of a burden to them. That  makes me luckier than others with my condition. More than 550 disabled people have been murdered by their parents, relatives, or caregivers in the past five years in the United States, according to the Autistic Self Advocacy Network.

“We see the same pattern repeating over and over again,” ASAN says of the grisly phenomenon. When disabled children are killed, the media focuses on the “burden” that the murderer faced in having to care for them. People sympathize with them instead of the victim. And in the worst cases, this can lead to lighter sentencing.

There are also ways that I am safer than many of my fellow autistic people that we don’t yet have the statistics for but that I can definitely see in the world right now. As a cisgender white woman, I do not worry that I’ll be killed by the police like 15-year-old Stephon Edward Watts or 24-year-old Kayden Clarke. Nor will I have to suffer the serious long-term health effects that this kind of constant fear and dehumanization can have.


The stress of living with autism is exhausting
You can’t entirely separate my incredibly privileged and lucky autistic ass from these devastating statistics. Autistic adults who don’t have a learning disability, like me, are still nine times more likely to die from suicide than our non-autistic peers. Autistica, a UK charity, explores some of the complex reasons that might be behind this alarmingly high suicide rate in a report on “the urgent need for a national response to early death in autism.” Or you can just take a look at my own laundry list of issues to get the general idea:

I’m tired all the time. The coping mechanisms that I developed as a bullied and undiagnosed child — from learning to mimic the behaviors of people who are more naturally likable than me to holding entire conversations where I reveal nothing about myself for fear of being too enthusiastic, too annoying, too overbearing, or simply too much — are not great for managing a remotely healthy life or building self-esteem. The effort it takes to fit in is increasingly exhausting as I get older.

All that hard work to make other people more comfortable around me feels more and more pointless. I appreciate that I have people in my life who have assured me that I can just be myself, but unlearning almost 36 years of poor coping mechanisms and performances also takes a buttload of work. My sleeping patterns, due to anxiety and possibly to autism itself, are erratic at best.

I value the social and career gains that I made when I had more energy and inclination to blend into society. I’ve wanted to be a writer since I was old enough to read, and I’m now lucky enough to survive on writing alone. But with it has come chronic anxiety, which seems to increase exponentially. There is, however, one calculation that I’m always doing in my head: whether my contributions to my family, friends, and the world are at least equal to all that I feel like I’m taking from it. I always feel like I’m at a deficit.

I repeatedly have to tell people I’m not a math savant. I’m tired of watching people who aren’t on the spectrum tell negative versions of our stories while I can’t find the funding or the audience to tell my own. I’m tired of watching people get feels and inspiration from shows like The Good Doctor while they can’t seem to care about autistic people in real life.

I’m so, so sick of watching people pay lip service to the value of autistic life while funding research into prenatal testing for autism at one end and supporting euthanasia for autism on the other, all in the name of preventing suffering. As if these measures that suggest that autistic birth should be prevented  —  or that they have a duty to die if they are too much of a “burden” on their loved ones — don’t make me feel worthless.

Even when I’m not actively struggling with any of the above, there’s the constant stress and anxiety. My resting heart rate is in the 90s. My body aches in ways that I can’t entirely attribute to age. My energy level appears to be similarly deteriorating.

This should not be a good enough outcome for any autistic person. We all deserve better than this.


Full Article: "I’m autistic. I just turned 36 — the average age when people like me die."
 
Last edited by a moderator:

Riley

Well-Known Member
Well, now my theory is correct. I am due to die. Which is why I'm dreading tornado season.

No, I'm not joking. I'm utterly convinced I'll die if I do something like go on a roller-coaster or drive a car. Under the firm belief something will go wrong, causing my death.
 

AGXStarseed

Well-Known Member
46 - with a strong propensity to posting about onions.

LE2.gif
 

Butterfly88

Jello Queen
V.I.P Member
36?!? The National Autism Association says "autism itself does not affect life expectancy, however research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents". Considering I'm high functioning and know not to wander into water or put myself in other dangerous situations, I see no reason why I won't live a normal lifespan.
Source of quote: http://nationalautismassociation.org/resources/autism-fact-sheet/
 

Buzzerfly

Well-Known Member
Wi understand that for a not unplugged NT, having an autistic kid would be very difficult, as they constantly take focus away from the world when there is no alternative. BUT how are they excused from murder or abuse?? If you kill or harm an autistic person, weren't you already evil? And the sad person just accidentally made you stop hiding? Because everyone in the world has enough money to send their kid to some shitty group home.
 

pjcnet

Well-Known Member
V.I.P Member
Well I'm 48 and on the autistic spectrum, I have health issues, but some are caused by smoking. My younger brothers are only a little younger than me in their mid 40s and they're still physically very healthy and strong despite being on the very low functioning end of the autistic spectrum. I read a thread about an elderly member who was only recently diagnosed and I know there's a quite a few members here older than myself who are also on the autistic spectrum.

In other words don't take statistics like this too seriously, many are twisted so they appear to "prove" what they want. Similarly organisations such as political parties use statistics all the time in an attempt to "prove" what they want people to believe, then an opposition party will show their own statistics that will often "prove" something completely different.

In fact misusing statistics is one of the most powerful ways to "lie", for more on why please click here.
 
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pax

Well-Known Member
I can relate to this.
When I was about 20, I figured I was never going to make it to 30. (Spoiler - I'm still kicking).
These days, I'm less likely to care about fitting in, by which I mean my life no long revolves around societal norms. It's still exhausting.( I also have a resting heart rate in the nineties, and high blood pressure.) It gets harder to give a damn, but it also gets harder to pull on the mask and pretend.
 
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Otenba

Maverick
Young kid me was told below the age of 10 that it was unlikely I would live past 60 because of my non-autism disability. This did affect how I approached things in my life and now I'm learning that it's more and more likely that I'll live longer, it does make me think how unhelpful it is to tell someone their life expectancy might be based on a disability. People interpret it in a very black and white way, like I did as a child, and it likely is not even right! If you're terminal, fair enough, but definitely don't take average life spans seriously. You're gonna die someday anyway and it's more likely to be something you weren't even expecting.

Some take this to mean "so I shouldn't worry about looking after myself" for some reason. No, you fight for your quality of life. Don't write yourself off. You are worth the trouble if it means you can enjoy life more than if you neglect it. Fight for your time to live.

Sorry if this upsets anyone. I just want to live as long as I can, despite the darker days, and my heart goes out to anyone who feels they aren't worth the fight. You definitely are.

Best wishes to all.
 

Anthracite

Active Member
I didn't know this, bloody hell :/ Since I was in the hospital yesterday I had my heart rate taken about 5 times; the highest was 160bpm, the lowest was 110 bpm. Some of that was because I was I was stressed out but I'll bet my heart rate's still above average, and the stress of being autistic/anxiety-ridden is probably a big cause (I've never smoked/drank/took recreational drugs).
 

Judge

Well-Known Member
V.I.P Member
It would be quite ironic if living into my 60s was in fact attributable to not knowing I was on the spectrum until my 50s. So much for self-awareness! :eek:

But yes, I'm more or less joking.

I think. o_O

Though all kidding aside, I've always been aware of the suicide rates of people on the spectrum since discovering I was on the spectrum as well.
 

Mary Anne

Well-Known Member
V.I.P Member
(Not written by me. Click the link at the bottom of the page to read the full article)


On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

The good news is that I have officially, as of 8:35 am Eastern on February 7, made it.

The bad news is that living while autistic doesn’t always leave one with much energy to write all of the meaningful things that you want to write to improve your life and the lives of other people like you.

Turning 36 scared me. I want the fact that autistic people die so much earlier than the average American to scare you too.


Here’s why that number is so low — and all the ways I’m lucky to have made it to 36
Some caveats. First: Not all studies on autism and mortality agree on the average age of our deaths. If you think I’m being overly dramatic by picking one that appears to cite the youngest age, here are some other recent studies with more positive results. One says 39 is the average life span; another says 54. By “positive,” though, I mean “studies that determined autistic people live longer, on average, than 36, but still found that we die significantly earlier than our non-autistic counterparts.”

Second, whenever I write about autism, there’s always someone who shows up to point out that I’m not really autistic enough to count or that I’m not the kind of autistic person that people are thinking about when they think of the tragedies and pressures that face people on the spectrum.

Because I can speak, work, and maintain a semblance of a social life — and because I am able to hide my most severe symptoms from other people — they assume that I am too “high-functioning” to be considered autistic. Before that happens here, let me say that, yes, I am probably at a lower risk of death than many autistic people. Not because I’m “higher-functioning” or because my autism is mild, but because I happened to be born into a certain body and a certain set of circumstances.

For example, the study that CNN cites, “Injury Mortality in Individuals With Autism,”primarily focuses on — as you can guess from the title — death from injury. As a child, I was never a wanderer (as many autistic children are), which put me at a low risk for drowning and other related deaths. I’ve had seizures, but I don’t have epilepsy (as many autistic people do), which puts me at a lower risk of death.

I also don’t have to worry that my incredibly supportive parents will murder me for being too much of a burden to them. That  makes me luckier than others with my condition. More than 550 disabled people have been murdered by their parents, relatives, or caregivers in the past five years in the United States, according to the Autistic Self Advocacy Network.

“We see the same pattern repeating over and over again,” ASAN says of the grisly phenomenon. When disabled children are killed, the media focuses on the “burden” that the murderer faced in having to care for them. People sympathize with them instead of the victim. And in the worst cases, this can lead to lighter sentencing.

There are also ways that I am safer than many of my fellow autistic people that we don’t yet have the statistics for but that I can definitely see in the world right now. As a cisgender white woman, I do not worry that I’ll be killed by the police like 15-year-old Stephon Edward Watts or 24-year-old Kayden Clarke. Nor will I have to suffer the serious long-term health effects that this kind of constant fear and dehumanization can have.


The stress of living with autism is exhausting
You can’t entirely separate my incredibly privileged and lucky autistic ass from these devastating statistics. Autistic adults who don’t have a learning disability, like me, are still nine times more likely to die from suicide than our non-autistic peers. Autistica, a UK charity, explores some of the complex reasons that might be behind this alarmingly high suicide rate in a report on “the urgent need for a national response to early death in autism.” Or you can just take a look at my own laundry list of issues to get the general idea:

I’m tired all the time. The coping mechanisms that I developed as a bullied and undiagnosed child — from learning to mimic the behaviors of people who are more naturally likable than me to holding entire conversations where I reveal nothing about myself for fear of being too enthusiastic, too annoying, too overbearing, or simply too much — are not great for managing a remotely healthy life or building self-esteem. The effort it takes to fit in is increasingly exhausting as I get older.

All that hard work to make other people more comfortable around me feels more and more pointless. I appreciate that I have people in my life who have assured me that I can just be myself, but unlearning almost 36 years of poor coping mechanisms and performances also takes a buttload of work. My sleeping patterns, due to anxiety and possibly to autism itself, are erratic at best.

I value the social and career gains that I made when I had more energy and inclination to blend into society. I’ve wanted to be a writer since I was old enough to read, and I’m now lucky enough to survive on writing alone. But with it has come chronic anxiety, which seems to increase exponentially. There is, however, one calculation that I’m always doing in my head: whether my contributions to my family, friends, and the world are at least equal to all that I feel like I’m taking from it. I always feel like I’m at a deficit.

I repeatedly have to tell people I’m not a math savant. I’m tired of watching people who aren’t on the spectrum tell negative versions of our stories while I can’t find the funding or the audience to tell my own. I’m tired of watching people get feels and inspiration from shows like The Good Doctor while they can’t seem to care about autistic people in real life.

I’m so, so sick of watching people pay lip service to the value of autistic life while funding research into prenatal testing for autism at one end and supporting euthanasia for autism on the other, all in the name of preventing suffering. As if these measures that suggest that autistic birth should be prevented  —  or that they have a duty to die if they are too much of a “burden” on their loved ones — don’t make me feel worthless.

Even when I’m not actively struggling with any of the above, there’s the constant stress and anxiety. My resting heart rate is in the 90s. My body aches in ways that I can’t entirely attribute to age. My energy level appears to be similarly deteriorating.

This should not be a good enough outcome for any autistic person. We all deserve better than this.


Full Article: "I’m autistic. I just turned 36 — the average age when people like me die."

If it’s any consolation to you, I am turning 62. I have survived extreme childhood abuse, alcoholism, extreme risky lifestyle and people in my younger days, abusive lovers, mental illness, suicide attempts and self harm, 3 evictions, homelessness for months, poverty, and autism. I never planned on living past the age of 25! Averages are just numbers. If you have made this this far, you can make it to ripe old age.
 

Ezra

Relax, it's just chaos.
I didn't go through the material, but I know in other cases these types of longevity studies can be misleading. They decide since one is autistic they might not be able to get a good job, so they live in a bad neighborhood with crime and smog, eat cheap unhealthy food, more likely to be depressed and commit substance abuse and can't afford medical care etc. Each one of these strikes takes like 5 years off a lifespan. But it doesn't have anything to do with genetics.

So if that type of bad stuff I mentioned above doesn't apply to you, then the statistics don't either.
 
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Zhantera

Active Member
You know, that is actually weird because in my case, I don't really think I set out any big plans for my life because I seriously didn't think I'd live this long! LOL
I'm thoroughly happy to have beat the odds, I guess. But getting to 40 has left me with kind of a....ok what now, sort of mindset.
 

Matthias

Well-Known Member
Loners die 30 years younger on average. No amount of dogs, other pets, or obsessing over special interests can replace what is lost from not having strong relationships with other people. If you (any loners who are autistic) want to live longer, you have to quit living in your head, stop thinking negatively (no, you're not being gaslighted, you're just paranoid or thinking irrationally), start paying attention to people around you, and get help with your emotions so people will want to be around you since emotional immaturity is a major impediment to relationships.
 

Captain Jigglypuff

Leader of the Jigglypuff Army
V.I.P Member
I think that’s ridiculous. I’m 37 and I’m relatively healthy and ten years ago I knew a woman that was 37 and had just been diagnosed as having Asperger’s.
 

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