Will autism be the death of me? is a tiny bit sensational for the headline, but not far off from what I’m going to write about.
Now, a major Swedish study provides a wider perspective on premature mortality among people with autism. Neuropsychologist Tatja Hirvikoski and colleagues at the Karolinska Institute compared mortality rates of people with autism with the general population over two decades. Speaking from Stockholm, Dr Hirvikoski says that she was “shocked and horrified” at the results. 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.
Why do people with autism die so young? For those with an associated learning disability, the leading cause is epilepsy: this kills people with autism at a rate 40 times that of the general population. For people with autism who do not have a learning disability, the key factor is suicide, for which the rate is nine times greater.
Think this is sad? I do — and I’ve lived it.
The KEY factor is suicide in people like me.
And the fact is, I have attempted suicide twice in my life — once at age 14, and again at age 20.
Yes, some of the thought is, well, I’m turning 31 this year. That’s 11 years without an attempt…that’s good, right? Obviously I haven’t tried again…
But, it doesn’t mean I haven’t been tempted. It doesn’t mean that in my darkest moments, in those times when I’m emotionally exhausted and devastated from trying to make it through another day, and everything has piled up to the point of excruciating pain in my head. Just because you don’t see it or hear us talking about it, doesn’t mean we aren’t thinking it or haven’t thought about it in the depths of our weakest points when surviving seems the most painful option.
I spent most of my life not knowing what was “wrong” with me and when I finally knew, it was relief. But the relief didn’t last long because it turned a problem I thought could be fixed with therapy and medications into something I would have to find ways to COPE with for the rest of my life.
My post about exhaustion? Just the beginning of an issue that permeates every inch of my existence.
Most days, simply breathing is enough to keep me “in bed” all day. Doing anything beyond the normal daily basic activities end up being all I can manage, and the same joblessness that gives me the freedom to have my terribly bad days, is the same situation that compounds my problems. And other days, I get 2 hours of sleep in 24 hours and go and go for days on end with 2 hours of sleep each night, and of course, BOTH of these take an impact on your health and not in a good way.
I am going to disclaim anything beyond this point with this simple statement: just because this is what I’ve experienced doesn’t mean everyone is like this, so this isn’t personal…it’s merely what I’ve gone through. Keep that in mind as you read.
First, we live in a society where anything that makes you different automatically puts you further down on a list of what someone wishes to employ for a job. Most of my life I worked fast food and retail – physically and mentally demanding work (contrary to what people think, it’s not an “easy” job for 8 to 10 hours a day) for someone like me – and we won’t even go into the fact that the wages were so poor that I practically starved to death trying to live on my own, because I could only afford to eat once a day. Then, when I could no longer physically handle it due to a car accident, I had nowhere to turn to.
No college degree (even though I attempted six times and technically have junior level amount of credits because I ran out of funding before I knew what the problem was and couldn’t afford to change my degree into one I could actually finish) — I was attempting to become an accountant, because I actually enjoy bookkeeping and taxes, but couldn’t pass the calculus and stats classes — math at that level is beyond my comprehension even with extensive tutoring I received. Basically, I had no others “on paper” skills, and slowly but surely following my accident in 2007, my ability to get another job dwindled to where it’s at now — pretty much impossible.
Second – there aren’t enough jobs for everyone (contrary to the “just get a job or two or three if you want to eat” people)…so the jobs that ARE available are either jobs people desire to have filled by those with at least a Bachelors, or the physically demanding jobs I can no longer perform. I have been turned down by job after job, entry level jobs, including call centers that train you! A job I applied for even though I struggle with being on the telephone with people, because the government told me “my hands still worked” and therefore, I wasn’t eligible for disability! That’s right — they consider me basically disabled except for my hands…which is why I turned to publishing my writing, but even my hands struggle with working as I want them to sometimes.
I have zero help with every day living. Last year I made less than $7500 for the year from my writing and had food stamps; this year, I no longer qualify and it’s not because I’m making a shit ton of money.
My writing is all the money I make and all I have to feed my son and I with, and I am lucky I can live with others so I don’t have as many costs.
I am not living on the system; the system has abandoned me because I learned to cope the best I could growing up and now people treat me as if I’m normal even when I’m not. Because even with ALL my challenges, the fact I can COMMUNICATE works against me. I was told it’s not the job of the government to help me get a job, they just say I CAN get one…somewhere, doing something with my hands, y’know. They don’t care if nobody will hire you!
This is the future of autistic adults because services for adults is SHIT, and I will tell you, directly contributes to the desire to kill ourselves, in my opinion. There isn’t enough housing or assistance to go around and when you can’t hold down a job, when your inability to deal with certain things leads to job loss, when people think you’re a loser because you aren’t a productive member of society as an adult no matter how hard you try, why in the world would you think we wouldn’t be suicidal?
Nobody wants someone to take care of them forever. None of us want to feel so helpless that we’re trying and trying but just can’t manage to ‘do it the right way’ and none of certainly want to be a burden to our friends and family because we ‘fail to launch.’
People forget that autistic children turn into autistic adults…and nothing will get better until everyone understands that and do what they can to make life better for ALL of us. We aren’t normal. Just because we develop coping skills doesn’t mean we can keep up with this rat race called life. So so so so many of us can’t go, go, go without eventually burning out and making things worse than they were before. We don’t deserve to go hungry because all we can handle is part-time jobs, or one full-time job, just because many people think a person who didn’t finish college is lazy or a bum or doesn’t want to work hard. NOBODY deserves that.
You can’t see our struggles on the outside. Much of it is internal and we’re hiding from you, because it hurts to be judged constantly by how much we lack, instead of cherished for what we CAN do.
And yeah, sometimes…sometimes I want to die when I’m trying and trying and getting nowhere. When I’ve spent 30 years of my life SURVIVING and getting little to no joy out of struggling to put food on the table and keep a roof over my head, making bad decisions because I didn’t know any better and didn’t have the emotional capacity to understand, all while trying to live up to the worlds expectations of the adult they wanted me to be even though I wasn’t anywhere fucking close.
And truthfully, if it weren’t for my son, I can honestly say I might not be alive today. It’s hard though, even with him in the forefront of my mind, not to struggle with how much I just want my life to stop hurting.
People can tell someone like me to buck up, to get over it, to work harder, but it doesn’t work that way no matter how much they wish it.
And if you haven’t been there, you don’t get it, but it doesn’t mean you can’t learn.
We’re not selfish for those suicidal thoughts, either. Because we’re human, and we want to have lives filled with love and success just like anybody else!!
Want us to not commit suicide or even think about it? Want us to live, to thrive, to have fulfilling lives?
Don’t we want that FOR ALL CHILDREN AND ADULTS who are doing the best they can? Isn’t every single person worth helping to make their life the best we can?
Support us, and others. Help us and others in any way you can, even if it is the simplest thing such as listening even when we’re crying our eyes out and feeling hopeless. Understand we’re not like you, understand that just because you can’t see a problem doesn’t mean it isn’t there, and fight for the ones you love.
We all have the power to save someone’s life today with a kind word and a helping hand.
Until next time,