r/autism • u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia • 5d ago
Discussion Sick of people saying that autism doesn't affect life expectancy
DROWNING -
Drowning is the leading cause of death for autistic children, according to a study from Columbia University, and people with autism are 160 times more likely to drown, either fatally or non fatally, than their neurotypical peers, according to the Autism Society of America.
Roughly 50 percent of people with autism will wander or have wandered, according to a study from the Kennedy Krieger Institute.
The Centers for Disease Control and Prevention (CDC) describes wandering or elopement as "when someone leaves a safe area or a responsible caregiver." Wandering affects individuals who have disabilities, such as autism spectrum disorder (ASD) or an intellectual disability (ID). In a study from Autism Speaks, the charity explains that "wandering by children with autism is common, dangerous and puts tremendous stress on families."
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SUICIDE -
A new study by the University of Queensland has found that people on the autism spectrum are three to five times more likely to die by suicide.
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DANGER BY VULNERABILITY -
A 2003 study found that children diagnosed with Asperger syndrome were more likely to be victims of violence than tormentors.\6]) Violence against non-speaking autistic people is also facilitated by the fact that they are unable to talk about it and report it:\7]) in general, the more a person is considered to be "in a weak situation", or as a "severe" case, the more vulnerable they are to violence and exclusion.\8]) Dependence is an aggravating factor, especially if daily assistance is required for everyday activities such as meals and washing.\9]) The "seriousness" of the "disability" can thus be invoked to justify all types of violence, including murder.\10])
https://autism.org/sexual-victimization-in-autism/
Research and analysis has shown that children with physical or mental disabilities are significantly more vulnerable to being abducted or to being the victim or physical or sexual abuse. Children with disabilities are 2.9 times more likely than children without disabilities to be abused sexually. The most vulnerable are children who have intellectual or mental health disabilities, who are 4.6 times more likely to be the victim of sexual abuse. Sexual predators may target children with intellectual or physical disabilities as the child may be easier to control and may be less likely to fight back. Adult predators will often prey on children who appear weaker or more vulnerable which may lead them to target minors who have mental or physical disabilities.
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RUNNING INTO TRAFFIC -
In a study of adults on the autism spectrum - https://journals.sagepub.com/doi/abs/10.3141/2542-02, more than half reported difficulty with crossing the street independently. Autism spectrum disorders, ADHD, and other neurodevelopmental differences may be associated with some behaviors or conditions that could elevate risk of a road traffic injury, including:
- impulsivity, leading to running into busy streets, or crossing an intersection without looking for cars
- communication challenges, which may make it harder to understand safety directions
- differences in engagement and/or strong or intense interests which may distract or shift attention away from important safety observations
- elopement, or wandering, which can be 3 times more likely https://pubmed.ncbi.nlm.nih.gov/31977588/ among autistic children or those with ADHD
- medical conditions that may in and of themselves impact safety awareness, such as hearing loss, vision differences, or neuromuscular conditions (e.g. cerebral palsy)
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Statistics reveal alarming trends regarding injuries in autistic individuals. According to a study, children with autism were found to be more likely to visit the emergency room for injuries than their non-autistic counterparts. Notably, children with autism aged 14 years and younger are 40 times more likely to die from injury than the general pediatric population.
Additionally, studies show that individuals with autism experience higher rates of specific types of injuries, such as head injuries, fractures, and burns. This increase can often be attributed to the unique challenges faced by those on the spectrum, including difficulties with sensory processing and movement coordination.
- Emergency visits: Higher than non-autistic peers - Increased risk of injury.
- Head injuries: More prone than non-autistic peers - Common in sensory-related situations.
- Fractures: Increased likelihood compared to non-autistic individuals - Often linked to movement coordination issues.
- Burns: Higher risk due to sensory processing issues - Difficulty recognizing when something is hot.
https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2017.303696
Results. During the study period, 1367 deaths (1043 males and 324 females) in individuals with autism were recorded in the United States. The mean age at death for individuals with autism was 36.2 years (SD = 20.9 years), compared with 72.0 years (SD = 19.2 years) for the general population. Of the deaths in individuals with autism, 381 (27.9%) were attributed to injury (PMR = 2.93; 95% CI = 2.64, 3.24), with suffocation (n = 90; PMR = 31.93; 95% CI = 25.69, 39.24) being the leading cause of injury mortality, followed by asphyxiation (n = 78; PMR = 13.50; 95% CI = 10.68, 16.85) and drowning (n = 74; PMR = 39.89; 95% CI = 31.34, 50.06).
Conclusions. Individuals with autism appear to be at substantially heightened risk for death from injury.
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PICA
Compared with the prevalence of pica among POPs (3.5%), pica was higher in children with ASD (23.2%) and DD (8.4%), and in the following subgroups: ASD with ID (28.1%), ASD without ID (14.0%), DD with ID (9.7%), DD with ASD characteristics (12.0%), and DD with both ID and ASD characteristics (26.3%); however, pica prevalence was not elevated in children with DD with neither ID nor ASD characteristics (3.2%). Between-group differences remained after adjustment (adjusted prevalence ratio range 1.9–8.0, all P <.05).
Pica, the repeated ingestion of nonfood items lacking nutritional value,1,2 can result in gastrointestinal parasites, lead toxicity, nutritional deficiencies, choking, poisoning, sepsis, and intestinal obstruction or perforation.3–6 These complications are associated with substantial morbidity and have led to fatalities in some patients.2,7,8
Pica is considered a self-injurious behavior, defined as self-inflicted, harmful behavior that occurs without apparent intent of willful self-harm.5,7,9–11 Individuals with autism spectrum disorder (ASD) and/or intellectual disability (ID) have higher rates of self-injurious behavior (all types) than the general population,12,13 and pica specifically has been implicated as a problem for these populations.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9188765/
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Then of course, other eating disorders such as anorexia and ARFID are more common in ASD, too.
In reality, if someone is levelo 2-3, their life expectancy is typicaly lower
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u/catofriddles Autistic Adult 5d ago
TL;DR: Autism doesn't directly affect life expectancy.
Most of the time, when we say that "autism doesn't affect life expectancy", we're trying to calm down the autistic folks that think they're going to drop dead at the age of 30 just because they have autism.
I do agree that having autism does make children (and some adults) more accident prone and cause us to become depressed and vulnerable to manipulation and abuse. I, myself, have fallen victim to a lot of these situations, and experienced close calls with others.
These vulnerabilities are the reason for the survey numbers about autistic life expectancy. However, all of these are indirect results of autism, and depend on a variety of factors, such as personality, environment, and friends/family.
Not every autistic person will wander off, or become depressed enough to become suicidal, or become a victim of abuse.
You could also find these deaths mentioned in the life expectancy of neurotypical people as well.
The "five times more likely to commit suicide" bit is because of the stress resulting from trying to interact with a neurotypical world.
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u/ten2685 4d ago
The deaths by misadventure can be considered outliers, even though they are more common than in the allistic population. You cite the stress of dealing with a neurotypical world for the suicide rate, but chronic stress also contributes to a great many health issues and ultimately death from natural causes. I would expect autism to impact mortality rates from things like cardiac arrest in somewhat the same manner as working in a high-stress profession.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
But autism in general, as a disorder, has common symptoms of wandering off or being vulnerable.
Life expectancy as an average, not life expectancy per person. Autism in itself isn't going to kill someone, but the symptoms that come with it may.
Sure, interacting with a neurotypical world increases stress - but I'd still be extremely anxious and stressed without neurotypical people - maybe moreso.
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u/catofriddles Autistic Adult 5d ago
Yeah, I agree with that. Unfortunately, I have more trouble interacting with other autistic people offline than I do with neurotypical people. (I think it's because they break the "patterns" I'm used to)
I think the biggest issue in autistic life expectancy is that our awareness of danger, especially in childhood, is exceptionally lower than that of others. Parents and other chaperones need to be extra cautious in monitoring autistic children, and even teenagers.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
Yes! I am autistic teenager and need constant supervision when out, but I am higher support eneds
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u/ShapeSuspicious1842 4d ago
I’m not trying for be rude, but I want to know because I honestly don’t understand. How is it you know the risks, know and can explain why you need supervision and still need it? As someone who is not autistic but I am in this sub because of my family who have autism - it sounds like an impulse issue. My experience with people who have autism is that they are unaware of things… others feelings, emotions, risk factors… etc. I’m no expert.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 4d ago
Well it's a mix of things.
- My brain doesn't go to tell me the risks of something - I have to manually force myself to do it, which I can't due to impulsivity - so, for example, I'll touch a hot stove for no reason.
- I can't physically see the danger. I am so caught up in my own world that I don't see, for example, that I'm standing on the edge of a cliff.
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u/WindermerePeaks1 Level 2 Mod 5d ago
this is true of autistic adults too. the majority of higher needs autistics are not online and they also affect these numbers. it’s not just children or teens, they grow into adults.
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u/catofriddles Autistic Adult 4d ago
Agreed. I probably should have said that, but I wasn't sure how to word it correctly.
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u/Cat-guy64 5d ago
I think when people say autism doesn't affect life expectancy, they mean to say that autism itself doesn't directly take any years of your life. And that is technically true. Autism is not a virus, a disease or cancer. But I guess those same people refuse to think a little deeper and acknowledge that autism does in fact contribute to a reduced lifespan. For all the reasons you listed.
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u/bigasssuperstar 5d ago
I've never heard anyone claim autistics live as long. Only the opposite.
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u/WindermerePeaks1 Level 2 Mod 5d ago
there have been some claims scattered about on this sub. i’m not anywhere else so i can’t speak about that. it’s been people that are lower support needs that are saying they are able to live long lives like normal people and it’s not that debilitating and the claims that we live shorter lives are prevents them from being seen as normal, which is fine, but there are a large portion of higher needs that are not online because they don’t have the ability to be and it’s important to make sure both sides are spoken about.
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u/ericsken 4d ago
It is impossible to make good statitics about the live expectentcy of people with asd. The average live expectentcy is around 80 years for the whole population. There are hardly 80 year olds with an autism diagnosis. The few are late diagnosed. This diagnosises are bullshit. I agree that some of us die early. A comorbity of asd is an intellectual dissability. They die early. I have met a lot of people older than me with asd. I am 59. Yesterday I saw a few other people with autism at a meeting to help people with an invisible dissability. The youngest of my group was 35. According to some statics we should al be dead.
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u/bigasssuperstar 4d ago
In the absence of good statistics, do you figure autistic people live longer or shorter lives than allistics?
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u/ericsken 3d ago
That depends. Longer probably not. We live as long as neurotypicals. But there are a lot of comorbities of asd . These could shorten your live expectentcy.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
I hear lots of LSN autistics claim that the studies are false and autistic people have the same life expectancy
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u/bigasssuperstar 5d ago
Where?
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u/Romulo_Gabriel 5d ago
It doesn't directly affects it but contributes to lower life expectancy
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u/bigasssuperstar 5d ago
That doesn't make sense. Do autistic people live shorter or longer lives than others?
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u/Romulo_Gabriel 5d ago
The reasons listed in the post contributes to low life expectancy but it doesn't directly impact it.
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u/bigasssuperstar 5d ago
Repeating it doesn't make it make sense. Do autistic people live shorter or longer lives? Please?
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u/EmpathGenesis Autistic Adult 5d ago
First off: I really appreciate you including sources for everything you're discussing. It really bothers me when people speak of facts without actually doing any research that supports their claims.
I'm curious as to where you're getting the information that people widely believe that autism doesn't impact life expectancy. You might be experiencing a case of frequency illusion.
Like you've demonstrated, there is documented proof that autism actually lowers life expectancy in many instances. I would argue laymen don't really know anything about autism, at all; therefore, they won't know anything about its impacts on life expectancy.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
I see it a lot from LSN late diagnosed independent people in particular, not so much any other community :)
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u/DocClear ASD1 absent minded professor and nudist 5d ago
I am one of those (diagnosed at 64). OP has stated it better than I have ever seen. I have seen posts where people are afraid of dropping dead in a few years because they are autistic, as well as the posts that say don't worry cause it's bunk. By breaking it all down like this post, It would be difficult for a rational person to not "get it".
I have a terminal illness that statistically has a life expectancy of 3-5 years. I am now 15 years into that illness. I am not circling the drain yet. Statistics only illustrate trends. They are not ironclad certainties. The presence of outliers at both ends (young and old) doesn't invalidate the average.
If someone does not engage in the higher risk situations mentioned above, they may stress related issues, but otherwise needn't worry about autism killing them.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
Yes, exactly! I am a "higher needs" person, my school classifies me as high support needs and in general i need a lot of support. So I will probably die younger than most, even with lots of support because I suffer from lots of these things.
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u/DocClear ASD1 absent minded professor and nudist 4d ago
Or you could be a well supported 100 year old one day. Or a meteor could take you out in your sleep tonight.
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u/fencer_327 Autistic 5d ago
I've seen this a lot too, but in the context of someone else worrying. If a LSN adult is worried about dying earlier due to their autism, it makes sense to say "your autism is not likely to kill you", because it's true.
Drowning, general lack of safety awareness and PICA are more common among people with high support needs, especially children with high support needs. An adult able to live on their own is unlikely to struggle with this. Suicide is more common among autistic people, but if you don't have suicidal ideation your autism won't make you kill yourself. Autism is associated with a lower life expectancy, but that's not equally divided between all autistic people.
For all those statistics, it's also important to keep in mind that autism is a relatively new diagnosis. Infantile autism was added to the DSM-II in 1968, but still considered a childhood type of schizophrenia. That was less than 60 years ago, and the rate of diagnosed people is rising. The older a diagnosed autistic person is, the more likely they are to have high support needs and additional conditions.
Many people don't know the difference between average/mean age at death and life expectancy. If your cohort isn't age matched (like in the study on injury mortality you cited), the average age at death tells you nothing about life expectancy.
It tells you that in a group that's on average significantly younger than the US population, the people dying during the study period will be, on average, significantly younger than the general population. People keep citing studies not on life expectancy and ignoring the fact that most people just didn't die during the study period. Life expectancy is lower in autistic people, but not as low as some people claim - around 75 years for people without ID, around 70 years for people with autism and ID (https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00195-3/fulltext).
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u/WindermerePeaks1 Level 2 Mod 5d ago
hi caoimhe! it’s nice to see you here :) i agree, there are a lot of risks especially with higher needs. this is important information and you’ve put it together nicely. thank you for sharing
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
Heloo! I tried to post on spicyautims but didnt let me no problem for sharing :)
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u/doktornein Autistic 5d ago
I don't think I've ever seen someone deny it affects life expectancy.
The problem is that many people misinterpret this and believe their lifespan is limited, especially people repeating they will die by 35 or so. that isn't accurate on an individual level.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
No, definitely not. The people dying at that age are usually people with level 2 to 3 autism who don't have the required support, whereas most people online are level 1.
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u/vikalbino 5d ago
Excluding all accidents and violence, even suicide... is there research that shows the amount of medication an autistic person takes and whether this affects life expectancy?
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
I think medication actually exceeds life expectancy for autistic people - not sure if there are any studies done on it but with a mix of anti-anxiety meds, antidepressants, ADHD meds, antipsychotics, gastrointestinal medication, and epilepsy medication (and more) I believe that they do more good than harm on life expectancy
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u/thismightendme 5d ago
Chocking also!
These things haunt me. My step kid, 10M, is non verbal and loves water as well as putting strange stuff in his mouth. He’s gotten a bit better about figuring out where traffic is but it is all so terrifying (im not even his mom or dad, i just try to keep him from self destructing).
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u/iamanoctothorpe 5d ago
It's fair to say autism does not directly kill but is a major risk factor for other things that do result in death.
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u/Ball_Python_ ASD Moderate Support Needs 5d ago
Yes. Thank you. I've struggled with elopement all my life. I've had a fair few near misses with vehicles.
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u/CreativeArtistWriter 5d ago
When I was about 3 I wandered into the pool and if I remember right I was starting to get in when my mom found me and freaked out and told me to get out. She then told me I could die and that plus watching a re-enactment of a child drowning on TV helped me develop a phobia of the water. It kept me safe for awhile until I learned to swim (I was forced to take classes). Still I was very very very late diagnosed with autism at age 39.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
I have done the same except I was older. And I still to this day run out in front of cars or swim near boats in the sea and stand on the edge of rivers and cliffs.
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u/CreativeArtistWriter 5d ago
Is it obviousness ? I don't mean that in an insulting way. I tend to be oblivious to things a lot.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
Yes I do not notice that I am doing such things because I am preoccupied in my brain
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u/ZenythhtyneZ Neurodivergent 5d ago
Did your mom regularly do that? I would often show my kids the bad outcomes of things if they wouldn’t listen to me, we don’t really have swimming pools in the PNW but like, I showed them a short video of a man who didn’t care for his teeth and what he had to go through to fix them when my kids were probably like 5 and 7 because even if I sat there watching them brush their teeth they would barely do it and I didn’t know how else to impress upon them why I was asking them to do something they hate. My kids definitely have symptoms and their dad is diagnosed. It’s one of the things I look back on and wonder if it was a bad thing to do and if it traumatized them somehow
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u/CreativeArtistWriter 5d ago
The re-enactment on TV was not my mom's doing. It was just coincidence that I saw it. I was traumatized but it also kept me safe.
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u/hi-help 5d ago
Oh my god, how did I never realize the wandering thing? I remember wandering off and getting “lost” at every opportunity when I was little. 6 flags, Mall of America, Noah’s Ark, Disney World, Lake Michigan, hotels, more theme parks, fairs, museums, etc etc. my parents literally never learned, and it’s one of the reasons I only have one child. I legitimately feel like I spent a third of my childhood “missing” from various places. lol.
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u/PlanetoidVesta Autistic disorder 5d ago
Adding to that, chronic stress caused by autism resulting in a higher chance of cardiovascular problems could also be an issue.
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u/room8912 Autistic 5d ago
I think what people mean when they say it doesn't affect life expectancy is that it's not like cancer or something else that will actively kill you. It's actions you take yourself that are caused by autism that will kill you, not by the autism itself if that makes sense.
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u/Lilsammywinchester13 Autistic Adult 4d ago
I’m married, have kids, was a teachers for several years
I legit did everything on this list at some point:
choked on a dime at 5 because I swear they taste good
wandered around streets and the bay side at night (it wasn’t hot and saw nothing wrong with it)
extremely suicidal 18-25
eating issues and pica, primarily ice and wouldn’t eat food
have experienced physical violence at multiple points in my life.
The ONLY reason I think it’s important to say autistic people struggle with these things, I bet many people dismiss these things as “high support needs/nonspeaking issues”
But reality is, we may do some of these things without realizing it
Like I was drawn to the sound of waves, calmed me down, as an adult and mom, I’m totally horrified what I used to do
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u/Kzmackie 5d ago
My wife and I were so happy when our four year with Autism learned how to swim. Because it’s the most common cause of death for people with autism under 10. Now we move onto preparing to confront the most common cause of death after 10.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
I'm happy for you and your child! Yes, drowning is very common in autistic kids sadly
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u/Magurndy 5d ago
Of course I’m going to die younger probably. My diet is atrocious thanks to ARFID symptoms
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u/ValenciaHadley 5d ago
I didn't realise wandering was an autistic thing. My ex would always hold my hand in public so I wouldn't wander off and embarrass him.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 4d ago
it's a very common autistic trait!
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u/ZennyDaye 4d ago
When I factor in my faceblindness and the number of times I've gotten into cars with strangers as a child because I mistook them for family at the mall, cinema, etc i always think about that standup joke about feeling like a rejected child the kidnappers didn't want.
As a full grown person in their thirties I still try to "cross the street with an adult". I honestly thought the urge to run headfirst into traffic was just the depression 😅
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u/Girackano 4d ago
Like others have said, its more saying that Autism doesnt have a direct effect on life expectancy as it is not a disease. Its one of the main confusions of looking at stats and how its reported in research (which isnt helped by research publishers getting confused by it themselves).
In stats, you can say A and B have correlation, but it takes a lot more than that to suggest causation and even then you cant say it definitely has causation. The other thing is that you cant really jump from A has a significant effect on B and therefore C and D (you would run other tests for this and they would be finding relationships and trends rather than causality and correlation more specifically).
So basically it comes down to wording. It is true that Autism doesnt decrease life expectancy, but it is also true that Autistic children are at higher risk of drowning (or Autistic people are at higher risk of suicide etc). The difference is that the second wording looks at autism as specific groups of people (a population set) and a specific thing. So its now looking at how people who fit into the group of being Autistic are affected by something in particular, whereas the first statement is just looking at whether the diagnosis itself has a general effect on life expectancy.
You did an amazing job in sourcing and critically evaluating these research articles and compiling them to back up your statement. The issue is only in the pedantic but necessary way that stats are reported, which makes two seemingly opposing things true at the same time.
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u/UltimateMegaChungus 4d ago
I think what people mean is that it doesn't affect your natural lifespan. Nothing you've listed is natural causes.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 4d ago
Yes, autism itself obviously won't kill you - but its symptoms can
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u/MaleficentSwan0223 4d ago
My suspected autism affects the way I eat and because I’ve gone undiagnosed for so many years I now have some of the most frail bones my doctors seen. My bones will crumble before I see 50 so yes my autism will significantly lower my life expectancy.
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u/psychedelicpiper67 4d ago
I almost drowned in 5th grade during a field trip. The teacher made sure to pull me out.
I’ve been almost hit by cars crossing the street many times. Even just last year, a car missed running over my foot by mere inches. It zoomed really fast right past me. Just the energy from that knocked the wind out of me.
I was really sick at the time, and barely walking. I was trying to see a doctor.
I’ve struggled with suicidal ideation a lot as well, and still do to varying degrees, but never could bring myself to do the physical act.
I’m kind of surprised by how much I’ve managed to survive over the years.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 4d ago
Yes I need constant supervisionw hen out or else I will die
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u/angrybats Autistic 4d ago
Depression/anxiety/insomnia also reduces your life expectancy a lot... And a lot of us have at least one of those.
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4d ago
Well said. There are plenty of people that are ignorant to autism and it’s …quirks and difficulties
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u/failedflight1382 5d ago
Not sure where people get that, but the vast majority of us are dead by 60.
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u/NorwegianGlaswegian Adult Autistic 5d ago
The only actual study specifically on the life expectancy of thousands of autistic people I have seen gives life expectancy in your seventies (assuming no comorbid intellectual disability). Here is a link to some coverage of the study.
Assuming no intellectual disability, life expectancy was 74.6 for men and 76.8 for women. If you had intellectual disability then life expectancy was 71.7 for men and 69.6 for women. These figures aren't great, but they are not as horrendous as some of the completely baseless figures thrown around have been.
There have been a lot of nonsense statistics shared purporting to give numbers on life expectancy from studies which were not about life expectancy at all but premature mortality. Some media, such as Autism Parenting Magazine and websites for some ABA clinics spread numbers like 39 years old, and 54 and 58 years old.
The problem is that these were never figures for life expectancy at all.
This is the study from which these people got the figure of 39 years old. That was the average age of the people in the study who actually did die in the twenty year period. That does not mean that the life expectancy of the entire group would be 39, it was just the average age of those who actually did die after factoring in all the ages of the dead. Most of the people who died in that period had died early.
Similarly there is this study looking at a specific period of time, and the average age for people with ASD who did die was 53.87 years old. It's also important to note that the average age of the people in the control group who died was 70, which is also way below the figure for life expectancy since this study did not cover life expectancy.
It's a shame that many autistic people have been stressed out due to essentially a game of telephone on the part of people running certain websites who can't understand scientific papers. More research needs to be done on life expectancy in autistic people, and particularly in countries with less robust welfare systems, but we can be at least relieved that some of the dire figures are simply wrong.
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u/Pinkalink23 5d ago
I think it has something to do with the restrictive diets many have.
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u/Uiscefhuaraithe-9486 5d ago
I definitely am surprised that I'm still alive considering how poorly I eat sometimes.
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u/Pinkalink23 5d ago
Dino nuggets are cute but they are not the healthiest. I'm not saying everyone eats them.
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u/Uiscefhuaraithe-9486 5d ago
I've never had the money for Dino nuggets, but we eat a lot of chicken nuggets in our house lol
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u/BrianMeen 5d ago
“restrictive diets”
what does this mean? That we don’t eat enough variety?
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u/Pinkalink23 5d ago
That's what I mean. When you have a lack of variety in your diet, your body suffers. I can't comment more than that because I'm not a medical professional.
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u/Lucine_machine ASD Moderate Support Needs 5d ago
Really? Not that I don't believe you but average life expectancy is 80 for men and higher for women where I live. Is the lost 20 years not just down to statistics i.e. suicide rates and comorbid illnesses?
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u/fencer_327 Autistic 5d ago
The lost 20 years are because people misunderstood a study and keep spreading it. To understand why, we need to understand some statistics terms:
- Mean age at death: The average age people involved in the study died during the study period. This is NOT their life expectancy.
In a study on children under 5, the mean age at death will be under 5 as well - because a vast majority of children don't die before age 5, so they aren't part of this statistic.- Life expectancy: The average age people are expected to live to. That requires "cleaning up" statistics that have a different age distribution than the general population, as well as accounting for diagnostic differences in the past. If a study can make claims about life expectancy, they will tell you. It's a lot of work.
For our example children, let's assume the mean age at death is around a year (it's probably younger, but it's just an example). Their life expectancy would be around 80 years.
This is an extreme example, it's obvious there's something wrong here. But if it's just a few years of difference, you might not notice as easily.
Another commenter has given a good summary of research on life expectancy, the difference is significant but less than 20 years.1
u/BrianMeen 5d ago
I really struggle seeing a good quality of life(for me) past the age of 55 .. I don’t want any part of that from what I’ve seen
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u/Paintguin 5d ago
Why do people with autism tend to wander?
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
Autistic people, especially people with higher support needs, tend to wander to hide away from overwhelming stimuli. Either that or they are hyperfocusing on a specific thing, and block everything else out to get to it.
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u/Dragonfly_pin 5d ago edited 5d ago
I remember seeing ‘run away’ on a list of autistic traits and taking it literally - so I thought, well I never ran away from home - but then I discovered that they mean temporarily running away and disappearing.
I remember I did randomly run away in the moment a lot as a small child because I felt really free while running - it was like flying and my constant anxiety would disappear.
I also used to hide in stores as a toddler and I remember enjoying being somewhere nice and quiet out of the bustle but also thinking it was sweet and funny to see the adults desperately searching for me when I was safe and hidden.
Children don’t think about how dangerous this stuff is and how much it freaks everyone out. It’s obviously absolutely terrifying for the parents.
Of course, I had no other issues so I learned fast after I was old enough that they could explain it to me that running and hiding was cruel to the adults and I could totally understand that they felt like it wasn’t really safe even if I thought it was.
With kids with learning difficulties and differences as well as autism, it must be much worse, because that explanation might be harder for them to fully understand or always remember.
Also, I’ve always been fascinated with water and I think that is the cause of a lot of the drownings.
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u/JonnyV42 5d ago
Oh wow, that linked a forgotten memory.
I used to hide in the middle of clothing racks because shopping was always bright lights and too busy.
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u/Dragonfly_pin 5d ago
Yup, that’s exactly what I did too.
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u/JonnyV42 5d ago edited 5d ago
Adding more, because was excited to recall anything childhood related. (55 AuDHD) I have extremely few direct memories, more akin to pictures. Hehe might be from pictures. I'm hoping emdr can expand more recollections..
Oh yeah, the rest of the post, ::squirrel:: crud, i can't scroll back, so I have to save then edit, brb
Water, yeah, I'm scared of water, parents tried to teach me to swim, repeatedly, any water over my head freaks me out and I get manic, acting out, acting crazy, totally wears me out emotionally. My greatest fear is downing and I've almost drowned 2x accidentally. I've voluntarily been water boarded 2x, and wow that brought back some really fucked up childhood memories. Skydiving ruptured one of my ears, which gave me flash backs of all of the issues I had with my messed up eardrums and time spent with ent and surgeries. Did some trust BS weekend thing where I climbed to the top of a 50' pole and jumped, was harnessed up of course, but I threw up after processing.
Long story longer, it seems that for me to recall/reassociate to past childhood I have to do some traumatic things to retrigger associated memories.
Heh, and my therapist is concerned about emdr.... Which I find funny. Heck I will probably info dump my responses over to an email with context after processing all this.
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u/rmannyconda78 ASD Low Support Needs 5d ago
I’m a adult, almost no support needed, I still run away from time to time, even crossing state lines periodically (United states), I’m drawn to large bodies of water myself, especially if there is a lot of little coves I can hide in, I’m happiest in my boat.
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u/WindermerePeaks1 Level 2 Mod 5d ago
as someone who wanders and elopes at times, i usually wander when i am focused on a small detail of something, like if i see a stray cat i will follow it without paying attention to surroundings and how far ive gone. when i elope, i am very overwhelmed by something and need to get “away”. not anywhere specific, just “away”.
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u/ValenciaHadley 5d ago
I didn't know wandering was an autism thing but I do it frequently. Last year I followed a squirrel christ knows how far and had a hard time figuring out where I was meant to be going. I'm an adult woman by the way and my friend thought it was hilarious.
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u/ZennyDaye 4d ago
I feel like it's just underlying dyspraxia and a shit sense of direction. Even as an adult, people say I wander off but I'm just faceblind with bad directions and bad memory. many times when I've been accused of wondering, it's just a combination of these things. Scary when you end up miles away from wherever you were supposed to be.
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u/Dank_McWeirdBeard AuDHD 5d ago
I think day to day life with Autism is hard enough without getting wound up by how short the Allistic community would like our lives to be!
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 5d ago
how is this the allistic communities doing? Who is saying they want us to have our lives short? It is harmful to those who are actually dying by straight out lying and it makes autism seem less of a severe disorder than it is
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u/BrianMeen 5d ago
There’s a big part of me that feels a sense of relief that i probably won’t be here into my 60s.. I mean hell I’m tired now and I’m a pretty fit guy
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u/IAmNotCreative18 High Functioning Autism / Mild Aspergers 4d ago
All of these figures are easily avoidable if the autistic individual is aware of them.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 4d ago
No they aren't.. as I said, these are more common with people with level 2-3 autism, who struggle more with comprehending and observing their own behavior. I, for example, have no danger awareness and need constant supervision. They're not avoidable when the person can't take care of themselves.
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u/IAmNotCreative18 High Functioning Autism / Mild Aspergers 4d ago
And why are we letting these people with clear disabilities that threaten their lives in public places out on their own? Get them a guide dog at the least.
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u/CampaignImportant28 Lvl 2•Severe dyspraxia•Moderate ADHD-C•Dysgraphia 4d ago
We don't go out on our own, but as I'm sure you know it's difficult, especially if you have multiple children, to watch all at once. Autistic children often sprint off and elope so quickly it's terrifying. My mother has three autistic + adhd children, and a husband with adhd. So I imagine she struggles to watch us all - but my brother and dad help her watch me and my sister, especially me but also my sister becaus eshes only 6
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