Autistics Die 18-30 years Earlier? True?

[OkRad]

I could defiantly see this playing a part. Because I am bipolar my life expectancy is shortened by 10 years. The ONLY risk factor that plays a part in this is suicide.

I know. It's scary because a couple years ago, they realized we were thinking about suicide. Now they are finding we are doing it.

The article says heart, suicide, and epilepsy.

My heart is perfect. No epilepsy. But I notice as I get older, I do not have the skills to deal with the things life shoves down my face, like accidents and injuries and illnesses. And the reasons I cannot cope are:

1. Sensory issues: Say I need an operation. Fat chance. It's not just getting it done, it's afterward. The pain, the disruption in routine, it's lack of caregivers....yeah. I can see me getting bone marrow transplant or hip replacement or heart valve whatever. As the body breaks down, I feel it and can't get it fixed. I am 12 in a brown down body.

2. Disruption of Routine. My routine is very set in stone. One or two days off it and I am a disaster with meltdowns from Hades. If, for instance, I developed severe arthritis in hips or legs or knees, it's not as easy as an NT---just go get it replaced. No, it's not like that. To me, it is a 12 year old with no parents left and no one to take care of me and looking at not walking or a long recovery.

3. Social issues: Again, as we get older, if we were unlucky in life, the social isolation becomes so much worse. You see yourself alone and chances of connection are slimmer. Suicide rates go up with age in general, anyway.

4. Food issues. As I get older, this just gets worse.

5. Looking back, I see more failure than successes. The PTSD from every thing I went through and realizing I put SO MUCH UNGODLY effort into doing my best, staying alive, trying and grinding myself into a tiny , unreconizable speck and it all CAME TO NOTHING really, actually BLOWS my mind into a million pieces. NOTHING TURNED OUT.

6. The suffering I cause and have caused to those that love or loved me. The meltdowns, the financial stress on parents and caregivers before they knew I had Autism.......what they went through with the psych industry telling them to do things to me. Then, suddenly, "It's autism" . What a mind-f***,

That all said, why am I here? I have about two people in my family who, for some reason, want me here. I have explained to them that I am not going to stick this out .

I have been Aspie blunt and asked THEM "Why is it you want me to hang on this cross?? I love you, too, but I don't understand why you want someone to be around if they are in so much inexorable suffering with no way out? "

The look on their face kept me here one more day. It makes me sad to know I have caused so much pain.

 

[nowwhat]

The best part is, they blame you for the pain you've caused, yet love you and forgive you anyway. We were just doing our best, fumbling through a life not designed for us, not knowing the rules, or our capabilities and limitations. Their misguided blame, and sincere forgiveness is both cruel insult and love in one. How to deal with that? Anyone know, cause I dont.

 

[xDominiel]

Is it really forgiveness if they bring it up again the next time you screw up?

 

[OkRad]

The best part is, they blame you for the pain you've caused, yet love you and forgive you anyway. We were just doing our best, fumbling through a life not designed for us, not knowing the rules, or our capabilities and limitations. Their misguided blame, and sincere forgiveness is both cruel insult and love in one. How to deal with that? Anyone know, cause I dont.

I have come to realize how hard it is for them. I used to think autism wasn't THAT hard to live with. To me, it was my normal. It was only after years did I realize it was not normal and how hard it was for those around me.

Because I was undiagnosed and misdiagnosed, I really believed that with enough grit and determination, I could be like my other family members.

Every single time things went bad, I really thought one day, somehow, it would click.

Of course, it never did.

What my parents suffered was unforgivable. They were told I was just an obstreperous youngster who needed to be taught who's boss. Thank God they are intelligent and knew that was not the answer, but they did not have the answer.

So when they forgive me, I am glad. Yes, they may still blame me out of exasperation, but they have been through hell, too.

And remember, we have a lot of forgiving to do to them as well. Just because they did their best does not mean they did not do really stupid things to us, too. We have all hurt and been hurt. I would like to find that one, sole, non-existent family of an undiagnosed autie or aspie who handled it so perfectly that no one got hurt. I would like to learn from them!

 

[Alcyon]

At first glance, I couldn't relate to this. I have a doctor, I use him when I feel the need. I'd rather not die any time soon...so this isn't an issue for me.

Last night, the recollection of two odd situations sprang to mind, indicating that I have an unusual relationship with pain and perhaps a less than ideal awareness of what's going on with my body.

About fifteen years ago I had a bout of mono that I didn't attend to; my default is to carry on. The final week, feverish and with a throat so constricted, I just sat in my chair, incapable of eating, able to have a rare sip of water, and just able to breathe. My family had to intercede and get me to the local emergency room. How long would I have sat there not realising how sick I was?

Then there was a visit to my dentist. An x-ray revealed that a tooth had decayed to such an extant that it was hollow, and the nerve was affected. Much to my dentist's shock, I was completely unaware that there was anything going on.

But if I get a hangnail, or stub my toe...oh, the humanity!!!

 

[LinBot]

My therapist says that autistic's bodies are constantly in the "flight, fight or freeze" level of alertness. That has to take its toll that our bodies never "power down" so to speak. I know I can sense massive differances from my 30's to the mid 40's"

I find this too, even at 28. Though I exercise daily and eat well, I notice that I'm much more tired/shutdown/overwhelmed I get now than I did in my mid twenties.

Scares me.

 

[cory]

I know. It's scary because a couple years ago, they realized we were thinking about suicide. Now they are finding we are doing it.

The article says heart, suicide, and epilepsy.

My heart is perfect. No epilepsy. But I notice as I get older, I do not have the skills to deal with the things life shoves down my face, like accidents and injuries and illnesses. And the reasons I cannot cope are:

1. Sensory issues: Say I need an operation. Fat chance. It's not just getting it done, it's afterward. The pain, the disruption in routine, it's lack of caregivers....yeah. I can see me getting bone marrow transplant or hip replacement or heart valve whatever. As the body breaks down, I feel it and can't get it fixed. I am 12 in a brown down body.

2. Disruption of Routine. My routine is very set in stone. One or two days off it and I am a disaster with meltdowns from Hades. If, for instance, I developed severe arthritis in hips or legs or knees, it's not as easy as an NT---just go get it replaced. No, it's not like that. To me, it is a 12 year old with no parents left and no one to take care of me and looking at not walking or a long recovery.

3. Social issues: Again, as we get older, if we were unlucky in life, the social isolation becomes so much worse. You see yourself alone and chances of connection are slimmer. Suicide rates go up with age in general, anyway.

4. Food issues. As I get older, this just gets worse.

5. Looking back, I see more failure than successes. The PTSD from every thing I went through and realizing I put SO MUCH UNGODLY effort into doing my best, staying alive, trying and grinding myself into a tiny , unreconizable speck and it all CAME TO NOTHING really, actually BLOWS my mind into a million pieces. NOTHING TURNED OUT.

6. The suffering I cause and have caused to those that love or loved me. The meltdowns, the financial stress on parents and caregivers before they knew I had Autism.......what they went through with the psych industry telling them to do things to me. Then, suddenly, "It's autism" . What a mind-f***,

That all said, why am I here? I have about two people in my family who, for some reason, want me here. I have explained to them that I am not going to stick this out .

I have been Aspie blunt and asked THEM "Why is it you want me to hang on this cross?? I love you, too, but I don't understand why you want someone to be around if they are in so much inexorable suffering with no way out? "

The look on their face kept me here one more day. It makes me sad to know I have caused so much pain.

This very much relates to the suicide risk of manic depressives. It can be mitigated if you seek and follow through with therapy and medical care...but a large percentage don't seek either. I'm not saying therapy and medication eliminate risk but the people who ignore the illness are the ones at severe risk. Also #5 directly relates to me. I had some trauma I went through about 7-10 years ago and I brought up I was having flashbacks to a low-skilled/trained therapist. Her response was "let's not focus on the Vietnam type stuff and lets discuss something else". That was the first person I described what I now know is PTSD and I was immediately dismissed. Needless to say I never saw this person again.

 

[OkRad]

This very much relates to the suicide risk of manic depressives. It can be mitigated if you seek and follow through with therapy and medical care...but a large percentage don't seek either. I'm not saying therapy and medication eliminate risk but the people who ignore the illness are the ones at severe risk. Also #5 directly relates to me. I had some trauma I went through about 7-10 years ago and I brought up I was having flashbacks to a low-skilled/trained therapist. Her response was "let's not focus on the Vietnam type stuff and lets discuss something else". That was the first person I described what I now know is PTSD and I was immediately dismissed. Needless to say I never saw this person again.

Oh my gosh, that is horrific. Therapists can be so daft.

Yes, I agree, but the trouble is that help is inaccessible in many places. Where I lived, I was in full crisis and there were NO THERAPISTS, not even a wait list because I had the "wrong" insurance.

I finally found one who did pro-bono but it was supposed to be limited. She extended, bless her heat, but then I moved and again, same thing.

After three years I finally found a place that does nothing but autism, but let me tell you a lot of damage has been done. When people say it's all our choice, that is only true if we live in a true democracy which values its disabled and elderly and poor as much as their upper classes.

I do not live in a place like that and it's more than Autistic people who are killing themselves. So many are ending their lives in the US that the entire lifespan is dropping. There is very little help and people have long lost their bootstraps with which to pull themselves up.

 

[pax]

it probably doesnt help that many of us have communication/expression/language impairments and struggle with saying how we feel,this could lead to misdiagnosis and end up dying from something that could have been caught.

interaction can be an issue,if you struggle to interact you may struggle to make it known your not well and ask your support staff for a gp appointment or attend it yourself.

I used to have a fear of going to doctors because they did not seem to believe I was unwell, and it was really difficult to get them to give me any time off work when I was.

I went to one particularly terrible doctor for severe flu. I had actually been seeing a doctor closer to my place of work, for some time, but on this day, I needed a medical certificate and didn't want to drive that far. I told her I had the flu and wanted a medical certificate. She laughed and acted like I was a hypochondriac. She laughed and said her husband had taken a day off to see the doctor &she wished she could have a day off to see the doctor. She then told me to step on the scales and tell me what my weight was, and made a patronising comment because I quoted it to the nearest decimal point. She then measured my height and told me to get on the table for a pap smear! To which I told her I'd had one at another doctor and was not here for a pap smear! She looked furious . I think she then sent me out to get a urine sampleor something. I walked to the front desk and told them I wanted to leave. I've never been back.

I have since found a wonderful walk -in doctor who actually believes me when I say I am sick.

 

[HermanHesse]

Then people say it's all our choice, that is only true if we live in a true democracy which values its disabled and elderly and poor as much as their upper classes.

I do not live in a place like that and it's more than Autistic people who are killing themselves. So many are ending their lives in the US that the entire lifespan is dropping. There is very little help and people have long lost their bootstraps with which to pull themselves up.

Actually the elderly have a ton of Social Security and Medicaid because there are a lot of elderly people and they vote. Handicapped people are a small population and they don't vote. It makes sense for politicians to ignore them.

Furthermore, if the British NHS is to be believed they aren't doing a very good job with autistic people in a socialist government either.

However, please keep in mind the British NHS often has the worst statistics when it comes to people with autism. Does anyone know of studies on mortality done outside of Britain? Does Britain define autism differently from other governments?

 

[WildCat]

Co-morbid conditions really don't help the situation, whether they were present from birth or developed over a lifetime. Pretty sure a lot of us struggle to make sense of things and fail so often - the stress that builds up over a lifetime due to such can have a negative impact on our health and well-being.

The lack of support also plays a big part in it; too mild and you're practically on your own since you can cope with the world as far as everyone else is concerned, or too severely affected to be worth the hassle (no offense when I say that, but that's the harsh reality sometimes). A shame really, it's amazing what so many of us are capable of when we do get that much needed support.

 

[HermanHesse]

A shame really, it's amazing what so many of us are capable of when we do get that much needed support.

Could you give us some examples of these success stories? I've heard very few of them. How prevalent are they.

 

[OkRad]

Could you give us some examples of these success stories? I've heard very few of them. How prevalent are they.

I am beginning to ask the same question. I think it depends on how prone to sensory overload and inflexibility with routines. I also think people who had help since three or earlier and are in the system till they are 21 may have a good run of it.

However, I would question how well even they would do when a dx of leukemia hits and chemo has to be done. How, with all the sensory issues?! I could not even endure a biopsy in my chest. Or take broken bones in car wrecks or losing eye sight while aging or being debilitated with arthritis? How about needing dentures but not being able to tolerate them or getting a chronic illness of some sort to nag away at you for the rest of your life?

These ALL effect sensory issues and disrupt routine massively. And often people must deal with more than one of these at the same time! The older we get, the higher the risk. After fighting just to live in the NT world, how are we supposed to fight that and illnesses of all sorts and kinds?

I am sorry, but when the body starts to take a hit, and the medical community has to do things that cause excessive sensory overload and possible disfigurement and/or disruption of a lifestyle we fought so hard to create just to survive, I am not sure even those who are "plugged in" would last long.

If I am wrong, please post. I am desperate to be wrong. Not just anecdotal, but stats.

But Stats now show we die early. We simply are not sustaining those things.

 

[HermanHesse]

So after an hour or two of googling, it seems like the linked article was on to something. The best study done by this is one done by Sweden and it seems congruent with smaller studies done by Denmark and America.

That being said I'm worried that low-functioning autism has become a catch all for all sorts of disabilities. 'Classic' low-functioning autism seems to be really different from Fragile X Syndrome for example.

 

[HermanHesse]

What's also interesting is that according to the Swedish stuff, females with high-functioning autism have a higher rate of suicide than men. That's really weird because men almost always have higher rates of suicide than women. (Women attempt more suicide but men actually commit suicide.)

 

[OkRad]

What's also interesting is that according to the Swedish stuff, females with high-functioning autism have a higher rate of suicide than men. That's really weird because men almost always have higher rates of suicide than women. (Women attempt more suicide but men actually commit suicide.)

Yeah. that was the trope. Now, even in the US, highest rates of increase in suicide is middle age white women. I think the only reason women attempted more was that in the past, they were unable to do anything -like even divorce or have a credit card - without their husband saying it was OK!!

Their only way to end their lives was pills Drs gave them because they thought they were just hysterical and other very condescending things. But now, they can go and purchase things like firearms. I would bet if you looked up increase in purchases of firearms by women if would closely match increase in completed suicides.

Further, women probably got tired of being seen as attention seeking little weak waifs. When someone says they want to end their lives, M or F, well, maybe they really do.

OK, I just quick looked that up.......Firearms purchase by women up about 40% while suicides by women up 60%!!! Good lord

 

[Bellatrix]

Wonderful. As if we didn't already have enough things to worry about.

 

[Vixus]

Your equals you're.

I do see your point though.

Must you be a grammar nazi? It's a common mistake, especially on a forum that lacks spell check.

To add my idea of the topic at hand, no... we probably die around the same time as anyone else. Everyone is equally susceptible to cancer, Alzheimers, etc. Although the others fo have a point, strees is common among autists, but isn't it just about as much for anyone else?
The only thing I can see is how many of us don't have as strong of a sense of pain, or as much of a fear of death. I honestly can see that one as the source of my early downfall. I fear almost nothing, and I can be recless to the extreme.

 

[Bellatrix]

Your equals you're.

No it doesn't. "Your" is used when someone is referring to something that belongs to another person (ex. "This is your dog, you clean up after it"), whereas "you're" is a contraction that means "you are" (ex. "You are 183 cm tall").

By the way, yes, I am a "grammar Nazi". Simple mistakes like this really annoy me.

 

[HermanHesse]

OK, I just quick looked that up.......Firearms purchase by women up about 40% while suicides by women up 60%!!! Good lord

Where is this data?