Autistics die a lot younger then the general population

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Ashariel
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14 Mar 2016, 7:10 pm

kraftiekortie wrote:
Now that you have insight, you could reverse all which is ailing you.


In my case, no. It's not an attitude, it's a fact.

My attitude is one of acceptance, and determination to enjoy whatever time I have left. I'm grateful to have made it to 40, rather than becoming a statistic in my 20's. I've lived an interesting life, and I'm happy these days. The fact that autism has led to incurable illnesses in my case is not a complaint, not a regret, not a bid for pity, but simply the truth.



B19
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14 Mar 2016, 7:12 pm

One of the central issues in life expectancy studies is the age bands of the samples used.

To illustrate this simply, imagine a sample group that studies people age 1 to age 80 for mortality rates - a sample you might take from the official death registration records. You write down the age of everyone who died in the past 20 years from that targeted registry.

You get an average age from this - say 45 years - that's the "mean" of your sample. So you then conclude that the average age of death is 45 years for that population; but you would be wrong.

You can see immediately the problem with that kind of extrapolation: there are likely to be far more deaths registered in the 60-80 years old group, than say the decade-in their-20s subgroup or younger members of the total sample; the mean is calculated from the total lived years of life divided by the number of participants, so if the sample was stacked with 'oldies' to begin with - and the average age was derived from studying all deaths registered within say ten years or whatever, you can see why the result would seem plausible though faulty.

Other variables too would undermine the assumptions, for example, discoveries in medicine made during those 20 years might lengthen the lives of the younger members of the sample, changing access to health care, housing and so on - all sorts of things would need to accounted for, even if the sample was drawn in a technically robust way.

So I hope younger members here don't read the article in the OP post and respond with alarm. (I'm still going strong as one of the older members in the 60+ group here!)



lostonearth35
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14 Mar 2016, 7:16 pm

I went to the Asperger's Women's Association of Facebook and asked if it was true. One person said no, she was 70 and healthier than most other people the same age, and asked if I'd confused it with Down's Syndrome. I told her no.



kraftiekortie
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14 Mar 2016, 7:18 pm

I wasn't referring to your attitude at all.

I was referring to my mother's.

I'm just saying that having knowledge and clarity about yourself and your condition could lead to at least a certain amount of healing. Not having that knowledge leads to things getting worse, because you are not attending to what ails you.



peterd
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14 Mar 2016, 7:36 pm

Back to statistics. Before the seventies no one died with HFA. So any stats that exist are weighted heavily on the young side. Unknowing autistics who survive growing up have a pretty good chance of feathering their niche. Unless someone goes egg raiding with talk of autism.



kraftiekortie
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14 Mar 2016, 8:00 pm

There really wasn't much of a concept of HFA before the 1980s. And of Asperger's before the late 80's/early 90s. And even less of a concept of adults with HFA or with Asperger's until quite recently.

I would guess that the vast majority of older people within studies dealing with autistic people would probably have been diagnosed with Kanner's Autism when young, for that was the only autistic diagnosis until 1994, under the DSM-IV. Within the DSM III, which was revealed to the public in 1980, there was only one autistic diagnosis, "Infantile Autism," which translates to classic autism.

People diagnosed with HFA and Asperger's as children up to about 20 years ago are now about 40 years old at the most, meaning they were born around 1976.

Studies pertaining to lifespan amongst people on the present-day autistic spectrum would probably have to wait for at least another 20-30 more years, when the people born in 1976 would be 60-70 years old.

As it stands now, we are only assessing the lifespan of people with classic autism, it seems to me.



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14 Mar 2016, 9:11 pm

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

Agreed. With the exception of physiologically-linked risks like epileptic seizures, most of the risk factors are fixable, with a combination of lifestyle changes, improved access to good medical care, and better social support. I think autism advocacy is still in it's early stages, with research into better support, better care, and areas for improvement just getting going.

For those WP posters who are teachers or students studying medical, social work, or mental health services, the potential research topics for research and support are wide open.


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btbnnyr
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14 Mar 2016, 10:44 pm

BeaArthur wrote:
Chickadeesingingonthewrongplanet wrote:
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.

I'm offended by your taking offense to the original poster in this thread. First, he is a "veteran" with much more service to this community than you have had. Second, people who accuse others of trolling are often trolls themselves. Third, he is offering something for discussion and did not do the research himself, but it's a valid observation and we shouldn't stick our heads in the sand rather than acknowledging the very real threats to our wellbeing. Fourth, he might be forgiven for a preoccupation with death given that he is facing a very serious cancer threat himself.

You're a newcomer to this forum. If you don't like what our more senior members offer, you can always go somewhere else, or you can do what all newcomers anywhere are advised to do - sit and watch quietly until you catch on to the culture of the place.


I wonder, why is seniority important?
Newcomers can have good insights, as can long-time members here.


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15 Mar 2016, 12:03 am

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

Agreed. With the exception of physiologically-linked risks like epileptic seizures, most of the risk factors are fixable, with a combination of lifestyle changes, improved access to good medical care, and better social support. I think autism advocacy is still in it's early stages, with research into better support, better care, and areas for improvement just getting going.

For those WP posters who are teachers or students studying medical, social work, or mental health services, the potential research topics for research and support are wide open.


Agreed


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15 Mar 2016, 1:52 am

kraftiekortie wrote:
But you weren't BORN with a reduce lifespan.

I think those of us born before asperger's entered the DSM in 1994 faced the inevitability of misdiagnosis, debilitating prescriptions, bullying of all sorts, etc. all of which could reduce a lifespan. I think some of the damage might be permanent and might be a clue to the idea of dying young.



kraftiekortie
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15 Mar 2016, 5:45 am

That's probably so, what you say.

But I don't believe in the inevitability of a reduced lifespan. I believe it's possible only.

Cross my fingers...but I believe you, Claradoon, will live at least thirty more years.



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15 Mar 2016, 6:03 am

I'm dying young :D
It's better than dying old :?
Goodbye, cool world.


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15 Mar 2016, 6:20 am

btbnnyr wrote:
BeaArthur wrote:
Chickadeesingingonthewrongplanet wrote:
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.

I'm offended by your taking offense to the original poster in this thread. First, he is a "veteran" with much more service to this community than you have had. Second, people who accuse others of trolling are often trolls themselves. Third, he is offering something for discussion and did not do the research himself, but it's a valid observation and we shouldn't stick our heads in the sand rather than acknowledging the very real threats to our wellbeing. Fourth, he might be forgiven for a preoccupation with death given that he is facing a very serious cancer threat himself.

You're a newcomer to this forum. If you don't like what our more senior members offer, you can always go somewhere else, or you can do what all newcomers anywhere are advised to do - sit and watch quietly until you catch on to the culture of the place.


I wonder, why is seniority important?
Newcomers can have good insights, as can long-time members here.

Oh, indubitably. I don't disagree with that at all. But chickadeesinging was really, I thought, attacking the OP. I just can't countenance calling ASPartOfMe a troll, and I will defend my friend if I see that happening.

Added: Also, chickadeesinging PMed me after a different thread saying she was sad to see the tone of the forum, hoped I didn't mind her PMing me about it. My sense is, she doesn't like what she finds here and wants to clean up the joint. I don't think the joint needs cleaning!

We had a robust discussion in this particular thread (about autistics dying young - the current thread) and that's a GOOD thing. Overall everyone was quite polite. To suggest that ASPartOfMe's content needs moderating? Oh dear god.


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kraftiekortie
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15 Mar 2016, 6:59 am

It's obvious, especially when one goes beyond the surface, that ASPartofme is a most faithful poster, and has NEVER done anything that remotely resembles provoking anybody.

To accuse him of being a troll is like accusing Adolf Hitler of liking Jews.

He takes great care in his posts, and is most considerate of everybody. I've never even seen him "utter" a cross word at anybody.

He has more restraint than I do.



Claradoon
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15 Mar 2016, 7:01 am

kraftiekortie wrote:
That's probably so, what you say.

But I don't believe in the inevitability of a reduced lifespan. I believe it's possible only.

Cross my fingers...but I believe you, Claradoon, will live at least thirty more years.

Bless you, but won't that be a lot of work? Wishing many years to you too, KK.



btbnnyr
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15 Mar 2016, 11:39 am

BeaArthur wrote:
btbnnyr wrote:
BeaArthur wrote:
Chickadeesingingonthewrongplanet wrote:
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.

I'm offended by your taking offense to the original poster in this thread. First, he is a "veteran" with much more service to this community than you have had. Second, people who accuse others of trolling are often trolls themselves. Third, he is offering something for discussion and did not do the research himself, but it's a valid observation and we shouldn't stick our heads in the sand rather than acknowledging the very real threats to our wellbeing. Fourth, he might be forgiven for a preoccupation with death given that he is facing a very serious cancer threat himself.

You're a newcomer to this forum. If you don't like what our more senior members offer, you can always go somewhere else, or you can do what all newcomers anywhere are advised to do - sit and watch quietly until you catch on to the culture of the place.


I wonder, why is seniority important?
Newcomers can have good insights, as can long-time members here.

Oh, indubitably. I don't disagree with that at all. But chickadeesinging was really, I thought, attacking the OP. I just can't countenance calling ASPartOfMe a troll, and I will defend my friend if I see that happening.

Added: Also, chickadeesinging PMed me after a different thread saying she was sad to see the tone of the forum, hoped I didn't mind her PMing me about it. My sense is, she doesn't like what she finds here and wants to clean up the joint. I don't think the joint needs cleaning!

We had a robust discussion in this particular thread (about autistics dying young - the current thread) and that's a GOOD thing. Overall everyone was quite polite. To suggest that ASPartOfMe's content needs moderating? Oh dear god.


I see you were defending a personal friend.
I did not like invoking seniority on a forum where I think new and old members are equal.


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