Do #Autistic people *have* to die earlier than non-autistic folks?

New York Skyline with ice floating in riverYesterday I came across a really thought-provoking piece by Sarah Kurchak, I’m autistic. I just turned 36 — the average age when people like me die.

The stress of living with autism is exhausting.

On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

{Read the full article here}

And while I’m really glad that she wrote it, it signals a number of massive gaps that I really feel we need to address — and that I, as a 52-year-old Autistic woman who grew up around many, many, other Autistic people and relatives, many of whom lived to a very advanced age (try 103… my uber-Autistic college professor grandfather lived out his days with joy and purpose). And their quality of life was not shit (sorry Grandpa, I had to swear).

Frankly, it kind of depresses me that all the news coming out about us is bad. And it also depresses me to think about how many truly useful hours we spend trying to fix shit that’s just plain wrong, instead of living our lives to our best, enjoying ourselves, finding purpose and meaning, and having the kind of superlative quality we can have.

Yeah, living Autistic in today’s world is no picnic. Seriously, it’s incredibly stressful and defeating at times. The problem, from where I’m standing, is not that things in general are not to our liking, but that we expect them to be… and when they’re not, we’re caught off-guard.

This is a problem. For everyone. But mostly for us. Yes, the world is failing us. The rest of the world is neglecting to shield us from neurotypical aggression and unrealistic non-autistic expectations. People are mean-spirited and cruel. There’s a lot of pain, and too many people are more than happy to pass their pain along to others — especially if we seem weaker or more vulnerable than they.

But guess what? That’s the deal. That’s how people are. This is not news. And just as you wouldn’t necessarily light candles and hold a vigil for someone who saw all the warning signs around a tar pit, ignored the calls of others to stay out, crawled over a fence, and proceeded to wade into the muck and sink into it to their death… I’m not altogether inclined to weep bitter tears for people who are clearly able to see what’s what in the world, but keep pushing for things to be other than what they are.

Maybe I’m old and cynical, but the world can be a brutal place. So, we need to gird ourselves. And we need to spend far less time trying to change others… while we spend a whole lot more time on setting ourselves up for success. Seriously, the world is so full of amazing wonder and joy for Autistic folks — far more than for neurotypicals. We’re wired for joy, and we should bask in that as much as humanly possible

One of the most painful experiences in life is clinging to unrealistic expectations and non adjusting accordingly. I’ve done it plenty of times, myself, and yeah — it’s excruciating.

At the same time, one of the most wonderfully liberating things, is to accept things for what they are, and just get on with living your life, always working towards changing what you can — and understanding the difference between what can and cannot be changed.

To whit: My job situation.

I mean, it just sucks. It seemed like a good idea, when I first got it, and by many accounts I have done very well in it. But Autistically speaking, it’s a total setup. It’s not at all suited to my Autistic personality. It’s overwhelming, exhausting, and it requires that I be able to read other people and interact politically, communicate regularly, navigate social situations, and be on the phone with people on the other side of the world several times a day. How horrible! I haven’t bitched and complained about it as much as I could have over the past couple of years, but I’ve been suffering intensely from it.

And yet, there’s something to be gained from this. It’s been a fantastic experience, all the pain notwithstanding. And I’ve learned a lot. The biggest lesson has been that this is not the job for me over the long-term, and I have to get the hell out. I’ve “taken my medicine”, as they say, and I’m getting a lot in return. Street cred. A killer addition to my resume. Connections. And the pity of strangers, when they hear where I work 😉

Ha!

So, yeah, I could wail and gnash my teeth about how “ableist” and “discriminatory” my employer is, by creating this kind of environment. No shit. They are. But that’s a terrible use of time, because all my marinating in that pain isn’t going to change anything, and even if it did change for the moment, it’s not going to alter over the long-term. So, I take what I can get, emphasize the positives, and keep plugging along.

And I use every . little . thing I learn along the way to create a world that works better for me. Because that actually is something I have control over. I cannot possibly expect the rest of the world (non-autistic as it is) to shape itself to my needs. The government is not my friend. Legislation comes and goes, lest we forget. My employer doesn’t want to know I’m Autistic to better help me — they want to know, to shield themselves from a lawsuit. Authority figures are not in the business of tending to my needs. Servant leadership is all very well and good, but the vast majority of people and entities are just struggling to survive, and the people with the most influence are often the ones who feel most exposed and vulnerable. (My rant about our generally childish and 2-dimensional 21st Century view of “power” will come in a later post.)

The world is chock full of opportunities to make more of myself than I am today. I’m taking those opportunities, as chock full of risk as they may be. I’ll wade into the pain. I’ll pay the steep price. Yep, being Autistic is incredibly stressful, if I only inhabit the non-autistic world and chafe under all its myriad restrictions. But when I allow myself to simply BE Autistic, I accommodate myself, I arrange my life in ways that work for me, and I take care of my own shit, things get a whole lot sweeter.

It’s a new year. 2018. Year of the Dog. Last month of the Western astrological calendar. I’m tired of the same-old-same-old from the past couple of years. Time to keep getting more real every day, prioritize myself, my joy, my life, and focus on what really works for me.

Read Sarah’s full article about how sucky it can be to be Autistic in the world here. It’s a good one 🙂

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7 thoughts on “Do #Autistic people *have* to die earlier than non-autistic folks?

  1. Pingback: Do #Autistic people *have* to die earlier than non-autistic folks? – Aspie Under Your Radar – International Badass Activists

  2. I think it’s really important BOTH to do the work of setting ourselves up for success, and recognizing injustice and trying to change it. Those things may have to happen in different arenas, but I don’t think they’re mutually exclusive things to be concerned with, and just because in a lot of ways we probably could do better for ourselves, doesn’t mean that we don’t face unique and unacceptable risks.

    All of those things can be true at the same time.

    Liked by 2 people

  3. It doesn’t surprise me that autistic people’s life expectancy is lower than the norm. Speaking for myself, I have always had anxiety on some level. I don’t know what it’s like not to be anxious. I have panic disorder, insomnia and I had a mental breakdown last year. Stress has an effect on your body, especially the heart, bones and joints. I started with arthritis in my 20s. Now I’m 47 and all my joints are affected and I have Osteopenia. I can’t change the fact that the world makes me anxious. I’ve tried so hard to desensitise myself to it but it doesn’t work that way when it’s the way your brain works. I know I have to work harder at self-care to try and combat the amount of stress on my body. My body is a lot older than my chronological years and I think that’s common with autistic people. I try to find a positive in every day and no matter how crap my day has been, I can always think of something to be thankful for. No matter how tired and achy I feel, Is still get to be here, right? There’s a lot to be said to looking at the positives in any situation. It’s a choice and I choose to be as positive as I can. 🙂

    Liked by 2 people

    1. VisualVox

      I have intense anxiety, as well. And what I’ve found is that it’s a physical phenomenon more than it is a mental one. The mind gets involved, certainly, but the body has even more to do with it. So, taking care of myself physically has done wonders for my anxiety levels — or even when I still am anxious, keeping going in spite of it. Stoicism helps. Exercise helps. Eating right helps. Breathing in a balanced way helps. If I take any “shortcuts” on any of the above, my anxiety spikes, and I have to start again. Fortunately, I can…

      Liked by 1 person

      1. Yes, same here with the self-care and if I do lapse, no matter how small, the anxiety rises. It requires discipline especially when it comes to not eating sugary foods or chocolate weeps but my body reacts to the sugar so it’s a case of not eating things but feeling OK or eating them and feeling horrendous.

        Liked by 1 person

  4. In the end, it all comes down to accepting who you are and what you need to function and live a happy life. When I was younger, I was ashamed of myself. Now, I try to not give a f… about that other people might think about me. I try to listen to my body and just be..well..me. It can be hard at times, and it’s getting better.

    Liked by 1 person

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