Autistics die a lot younger then the general population

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GodzillaWoman
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14 Mar 2016, 1:36 pm

TentofMot wrote:
kraftiekortie wrote:
Please let me emphasize: I do understand that stress could cause a reduced lifespan.

That goes across the board. NT's feeling extreme stress probably would have a reduced lifespan, too.

Then I think: What role does pure stress, whether caused by autism or not, versus autism itself, play in a reduced lifespan?


Each would have to ask themselves how much of the stress they experience is autism (or co-morbid) related. Some have given examples above. As another example, much of the interpersonal stress I have experienced is related to people not understanding why I do not contact, visit, share time or activities them like others do. They often misread it as snobbishness, that I dislike them, etc, or they see it as odd/weird and I become an outsider and they directly or subtly mock me for it.

At least at first glance, for me, autism and the co-morbids I have account for a lot of the stress I have experienced, probably the lion share.

I think my autistic symptoms are a huge contributor to my stress, and most of my health issues are either due to stress or a reluctance to go to the doctor. I tend to be very afraid of authority figures because of a history of child abuse, and doctors are high on my list of scary people. I'm also often too exhausted or agoraphobic at the end of the week to go outside on weekends, so I don't get enough exercise.


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kraftiekortie
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14 Mar 2016, 1:41 pm

What I'm saying, really, is that the autism itself doesn't cause a reduction in lifespan in many cases.

Stress in life can cause a reduction in lifespan--whether one is autistic or not. Stress caused by autism could definitely reduce lifespan.

But being born with autism doesn't cause a reduction in lifespan merely because of the autism. Other factors have to be in play.

Somebody with Down Syndrome alone has a somewhat reduced lifespan (the reduction is much less than it was a generation ago). The physical ailments of Down Syndrome could be the cause of this.



kraftiekortie
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14 Mar 2016, 1:50 pm

In other words, don't assume you're going to die young if you're autistic.



Trogluddite
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14 Mar 2016, 2:00 pm

Another social aspect of how autism might affect health is the difficulty of accessing healthcare, and the all too common problem of misdiagnosis if autistic traits are not accounted for. I think this is particularly the case when it comes to treatment for mental illnesses such as anxiety and depression. Lack of autism awareness among front-line healthcare workers has been very common among those that I've worked with - I might even have been diagnosed a decade earlier had I been referred for an evaluation, rather than staff dismissing the possibility based on their own stereotypes.

My personal experience of cognitive based therapies is that they can be ineffective, or even extremely counter-productive, if autism isn't acknowledged and the therapy adjusted accordingly. If the patient is experiencing suicidal ideation, then it is obvious how this might greatly affect their life expectancy.

Even something as simple as requiring an early morning telephone call to get an appointment, or the lack of a home visit option, could severely restrict some people's ability to access the help that they need. I have many, many times waited for months after the first signs of depression because of anxiety over the process of getting help. Likewise, I know of several people who put off visits to the doctor or dentist due to hypersensitivity to needles or anaesthetics, and the lack of sensitivity of the professionals to the patient's anxiety.


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BeaArthur
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14 Mar 2016, 2:10 pm

Trogluddite wrote:
Even something as simple as requiring an early morning telephone call to get an appointment, or the lack of a home visit option, could severely restrict some people's ability to access the help that they need. I have many, many times waited for months after the first signs of depression because of anxiety over the process of getting help. Likewise, I know of several people who put off visits to the doctor or dentist due to hypersensitivity to needles or anaesthetics, and the lack of sensitivity of the professionals to the patient's anxiety.

I'm disappointed that people didn't pick up more on my "social support" hypothesis. For instance: if you have a close family member who can make that phone call for you - or drive you to the doctor, and sit in the waiting room with you, or even go into the examining room - all this becomes much, much easier.

Edited to add: and for what it's worth, when I have told staff I am phoning on behalf of my daughter who has autism, they are quite accommodating; so far, though, I've never told anybody that I myself have it.


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Trogluddite
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14 Mar 2016, 2:27 pm

Quite right Bea. Having an advocate, or even just sympathetic company, can make a huge difference to the anxiety provoked by those situations.

In modern times, when so many people move far away from family and friends seeking education and employment, I think we do need to be looking for ways to provide social support similar to the networks of family and community that were easier to establish in less 'mobile' times.


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TentofMot
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14 Mar 2016, 3:45 pm

I did a bit of searching and it seemed that the only widely accepted large scale previous study was done in 1998 and updated in 2002. The three published articles on this are available to read here:

http://www.lifeexpectancy.org/articles/a1.pdf
http://www.lifeexpectancy.org/articles/a2.pdf
http://www.lifeexpectancy.org/articles/a3.pdf

As far as the new study referenced in post #1, I can not find it available for free. The abstract only (and access to the study for a fee) is shown here:

http://bjp.rcpsych.org/content/208/3/232

Both studies seem to have come to the same number, 2.6 as the death rate compared the average (1). How this translates into shorter lifespans was quite different in the first study (-6 yrs male, -12 female) as compared to how reported in the Guardian Report referenced in Post #1 (-16 years, gender not specified).



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14 Mar 2016, 3:52 pm

I think the original post was, if not trolling, at the least provocative, negative, and not fully substantiated.

And I don't really think the title should be allowed to stand.

It's blatantly inaccurate and imprecise. Is it an average, mean, median, etc. What country and region was the sample taken from? What sample controls were there? Where is the epidemiology in it? Yes, I know I have a choice whether to
log in, and whether to read it.

But I really wish there was some moderating--it seems to me that the thread titles is rehashing some
questionable research in a very catastrophizing reductionist way. I would avoid someone who used that
as a conversational gambit. Really, I shouldn't have looked at the thread.



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14 Mar 2016, 3:53 pm

plus 'then' is the wrong word here



B19
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14 Mar 2016, 4:19 pm

The thread title seems to me very misleading as implies that just being autistic means you die younger! The research can only speculate about incidence rates, and if it didn't look at contextual variables in any depth then I wonder where the researcher was really coming from.

The first thing a peer reviewer of some academic strength would look at would be this question: were the targeted samples randomly drawn or not, as this is a fundamental scientific issue which very importantly relates to the credibility of the claims in the conclusion.



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14 Mar 2016, 4:38 pm

B19 wrote:
The thread title seems to me very misleading as implies that just being autistic means you die younger! The research can only speculate about incidence rates, and if it didn't look at contextual variables in any depth then I wonder where the researcher was really coming from.


Quote:
Data for the participants with ASD was extracted from the Swedish patient registry, while that for the control group came from the population registry; both sets were then linked to the causes of death registry. The study included over 27,000 individuals with ASD, of whom 6,400 also had an intellectual disability, and some 2.5 million individuals from the general population. The individuals in the comparison group were matched to those in the ASD group as regards county of residence, sex and age.
This large registry study – the largest of its kind – was a joint project between three departments at Karolinska Institutet: The Department of Clinical Neuroscience, the Department of Women’s and Children’s Health and the Department of Medical Epidemiology and Biostatistics.


Research was published in a credible British psychiatric journal, which you can access to read if you pay for it. I mean I'm not the brightest bulb in the box, but it all sounds fine to me. :roll:



kraftiekortie
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14 Mar 2016, 4:44 pm

The question is: how did the researchers define autism?

Also: What was the objective functioning level of the participants.

Autism is such a broad spectrum that a study concluding that "autistic" people are characterized by.......will not provide me with any information.



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14 Mar 2016, 4:56 pm

I'm high functining autistic in my 40s, I hope I don't die early, I love living. I love my job as a bus driver, I love being married to my husband, and I love not having any friends. I'm happy to not have friends. I don't want any. I've always been solitary and Iv'e been happy that way. I don't care for friends. So would lonliness kill you if you ENJOY being solitary, if you're HAPPY that way? Having friends causes too much stress for my autistic mind to handle.



kraftiekortie
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14 Mar 2016, 4:59 pm

You're not going to die early if you keep yourself healthy.

Your lifespan is not reduced by your autism alone.

Please believe that.



ASS-P
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14 Mar 2016, 5:03 pm

...Like me ? :( My father died 74 (My mom at 61 ~ lung cancer for the usual reason) I am 56 and I've had the " you may be dead in a year " concept brought up to me :| ........... :cry:



Dinosaw
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14 Mar 2016, 5:04 pm

Quote:
Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years


54?!?

Hallelujah! I only have one more year to live! Thank you God and The Universe!

Wow, I was beginning to think that I'd have to hold on for a lot longer. Thank you for brightening my day immeasurably.

Of course, I'm being ridiculous / sarcastic / snarky / whatever. I think.


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Last edited by Dinosaw on 14 Mar 2016, 8:38 pm, edited 1 time in total.