I’ve been thinking a lot about how I’ve lived my life, thus far. My birthday is coming up in less than a month, so my thoughts turn to retrospectives on the past year, as well as my life. I’ve only been around for ~53 years (compared to the 100+ years my elder relatives usually live to), so relatively speaking, I feel like I’m just getting started.
I know, I know, Autistic people are supposed to die something like 16 years before their neurotypical peers, and I’m sure many do. But all the Autistic folks I’ve been related to and have known, have all lived extraordinarily long lives, and they’ve been active and engaged in the world until the last few years.
So, I’m planning on being around for at least another 53 years — probably longer, since I’m in better shape than most of my peers, and I live my life intentionally, with future strength and stability in mind.
Anyway, I’ve been thinking a lot about the choices I’ve made in life, and how I haven’t really achieved everything I hoped to, over the course of the years. I’ve had so many dreams, so many plans, so many good intentions, and they all came to nothing. Because I couldn’t sustain the level of effort required to make it happen. I ran out of metaphorical steam. I got worn out. I worked to excess, then I crashed, and I never fully recovered. Basically, my life reads like one failed experiment after another.
And yet… I’m still here. And thinking about suicide and death and mental health, these days, I realize just how much of my life has been structured around keeping myself alive and mentally healthy, as everything around me has seemingly conspired to do the opposite.
I live in a profoundly hostile environment, full of social land mines and ample opportunities for faux pas that carry a heavy social toll. I’m active in my world, but I’m not at all comfortable in it. And while I do contribute, and there are a lot of people who really love and care for me, if I could leave it tomorrow for a destination that suits me and who/how I am more comfortably and healthily, I would — without a second thought.
But I can’t leave. The supports I’ve got, which I’ve worked so hard to put into place, are just now starting to “bear fruit”, as it were. After years of really scary precarious living, I’m finally in a place of stability that I can build on. And I have a household to support, including a disabled partner, so I’m not going to ditch my job anytime soon, unless something equal or better comes along.
That being said, I realize it’s been this way for my entire adult life. I’ve made my choices, and I’ve situated myself in life in the most economically advantaged position I can get, at a great cost to my mental and physical health. So, I need to go to extra lengths to keep myself viable.
That means… books! That means… taking the whole weekend off and decompressing… writing, reading, researching. That means, surrounding myself with stuff that brings me pleasure, whether it’s artwork I’ve made or pictures I’ve taken or art and photos I’ve bought from other independent artists. My home is full of many, many relatively inexpensive things that I love, which I (and my partner) just happened upon in our travels. A little figurine that cost $2. A Chinese hand fan that was given to us by friends whose wedding we DJ’ed. A giclee of a painting of a scene not far from my childhood home, by an Autistic woman I know. Pottery I threw many years ago, which I still love.
And my research… My special interests have varied and been in flux, over the past 10 years, but I still have the books. And when I dig into them again, I realize just how much they have helped me, over the years. All that reading, all that journaling, all those notes… they may never come to anything in the big, wide world, but they’ve kept me sane. They’ve kept me healthy. They’ve given me the outlet and the self-expression I needed, away from the pressures of professional performance.
And that’s a beautiful thing.
So, as my birthday approaches, and I start to slip into regret over all the things I never managed to accomplish, I have to remember — I’ve been very, veryactive in the field(s) of my choice over the years, and I’ve made some pretty amazing contributions to those fields within the sphere of my own personal life. It’s kept me alive, and it’s created something beautiful in my life — as well as indirectly in the lives of others who I’ve helped because my intense “special interests” made it possible for me to function.
That should count for something, to me. And it does. Just because nobody else knows about it, doesn’t mean it didn’t happen.
If a tree falls in the forest, and I’m the only one who hears it, yes… it does make a sound.
For the record, I’m not sure where this blog post is going to go, so if you get triggered by talk about Autism and suicide, it’s probably best not to read this. There are so many other really great things written on the blogosphere. I encourage you to seek them out instead of losing time here.
So, Autism and suicide. Apparently it got a lot of attention at the latest INSAR conference in Rotterdam, last week. And a lot of people on Twitter have been talking about it, since.
I have mixed feelings about suicide. I’ve dealt with suicidal ideation since I was a teenager. I can’t recall having that issue when I was younger — I think I was way too overloaded all the time to spare much thought about anything being different for me (i.e., not having to endure a miserable life). Then again, as challenging as my childhood was, there were ample opportunities for me to decompress and experience the ecstasy of special interests — and, well, just be and autistic little kid.
My mother actually loves to talk about what a little scientist I was, when I was younger. She thinks it’s hilarious and fascinating (not pathological) that I dismantled “girl toys” that were given to me, to see how they worked and use them for different uses, rather than playing with them as they were originally designed. All the stuff that would have qualified me for a DSM-V autism diagnosis and pathologized me within an inch of my life… well, those were all just quirks I had. They were the things that made me… me. And both my parents really loved and enjoyed that.
Of course, home was one thing. School was another. I was bullied intensely all during 5th and 7th grades, and I really struggled in many ways. But I ever thought about ending it all. When I got into high school, that changed. And I have to say, looking back on my four years there, I did engage in self-injury… but in the form of cross-country running. I ran myself ragged. Wore myself down to a rail, with my intense workouts. But I was fit, and I was winning, so it didn’t stand out at all.
I also started drinking in high school, and that took the edge off my intense discomfort. But it took me down some very dark roads, and when I re-emerged from my drunken haze(s), things were even worse than when I’d picked up a drink the night (or afternoon or morning) before. Drinking, ironically, may have saved my life at the start, because it helped me take the edge off the intense discomfort and mis-match between what I wanted for myself and what the world was imposing. Even if it was temporary, even if it did screw me up, it was still a pressure valve I could use at will. But it became a case of diminishing returns, and drinking in fact pushed me towards killing myself a number of times, until I quit for good, 29 years ago.
Thoughts of ending it all (let’s call it “SI” for “Suicidal Ideation”, a term I hate, but which serves its purpose) started in earnest when I was drinking, now that I think about it. I was so, so miserable. So queer. So autistic. So confused. So set-upon by everything. People expected a tremendous amount from me — and they weren’t wrong to do so. But they never provided me the kind of conditions I needed to truly excel. They just expected me, like some automaton, to produce excellence on a regular basis. They expected religion to meet my spiritual needs. They expected conformity to provide all I could ask for. They expected me to crank out superior “results”, time after time after time, with no break, no respite. And I expected that of myself, as well.
Because that’s what was done. That’s how things worked. And if I couldn’t do that, then I was clearly broken.
I spent a lot of time believing I was broken. Even before high school and college… back to the early days of not “getting it right”. Broken. I was broken.
And as adulthood encroached, with its requirements and expectations, and practically nothing on the horizon that appealed to queer little, autistic little, decided non-feminine little me… what was the point of going on? Seriously. What was the fucking point?
The closest I ever came to killing myself was at the end of my drinking, when I was scoping out the best place to end it all. I was working at a business 5 minutes from my home (for a sexual predator who literally salivated over “sexy” Black women who walked past his office windows)… and I would drive home for lunch most days. Because I could. There was a bend in the road that everybody went around too fast, and I was pretty sure that if I drifted into the oncoming lane during certain times of the day, I’d be killed on impact. Those were the days before airbags in cars, or regular seatbelt use. Oddly, I never thought about the other person I’d be hitting head-on. I didn’t care. I just wanted to end it all. To be done with everything. To stop the pain I was causing myself and others.
Because I believed it was all my fault. I was broken. There was no way out. So, I was going to do the world a favor and get myself out of the picture.
Fortunately, I quit drinking before I could see that through, and I got a lot of support from a 12-step group that focused my attention on my sobriety and getting my life together.
I wish I could say that I never thought about suicide again, but for 20+ years, it continued to be an issue with me. Until I hit menopause, SI was a regular occurrence, and it usually happened when I was in hormonal distress — just before starting my monthly cycle, when my body was completely out of whack and felt entirely at war with itself. As it turns out, one my ovaries was probably malformed and malfunctioning, which could have been why every other month, my life descended into a living hell for no discernable reason.
My SI also tended to coincide with the holidays, when I was in overload, anyway, what with the seasonal changes, the disruption to my regular routines, all the bright, flashing lights, the increased social demands, and extended visits to family — replete with opportunities to open up all those old seeping emotional wounds. Combine a holiday family visit with PMS (that sounds so inoculous, doesn’t it?), and you’d better believe I wanted to kill myself. Just end it. Put a cork back in the bottle and keep the evil genie from ever coming back out again.
I can’t even count the hours I spent howling in despair and anguish I experienced simply living life. I scared the shit out of my partner, that’s for sure. And it happened a number of times a year — usually around the holidays.
Looking back now, I have perspective. And I have understanding about why SI was such an issue for me. I understand the despair that drove me to want it all to End Right Now as a failure of pattern detection. I couldn’t see beyond my immediate excruciating pain, and I certainly couldn’t detect any possible alternatives to what I was experiencing on a regular basis:
Pressure to Perform
Recurrent failure to perform
Feeling broken, rejected, useless
Not being able to do what I truly loved often enough to make life worth living
Impossible expectations to conform and live up to society’s expectation of how and what and who I “should” be
Exhaustion — bone-crushing exhaustion that never quit
Chronic pain that would subside but never went away 100%
Brain fog, confusion, etc. from my impacted and constantly beset state
There just didn’t seem to be any alternative. There was no way out. Nobody was giving me a break. Nobody was just letting me be. It was just one incessant series of demands after another, and I wasn’t keeping up. I wasn’t keeping pace. I was drowning in all the things I was doing wrong, and there was little to no relief in sight.
When I hear people talking about how extraordinary it is, that so many Autistic people take an early route out of life, I have to wonder why. Do they not get how hostile the world is to us? Do they not see how futile it all looks to so many of us? Do they not know how impossible it all is for some of us to sustain and maintain the semblances of “normalcy” that are required, these days? What’s so wonderful about this world, so filled with anger and hatred and hostility and — worst of all — lack of logic and reason, that’s so determined to crush us under its boot heel, that we’d go to great lengths to stick around?
Seriously, who thinks the standard-issue world is such a great place? Yes, there are some really wonderful things about this planet, but the way things are set up, all of it is slated for complete and total destruction, while the vast majority of people just sit around and wait for it to happen — or buy popcorn and find a seat to watch the show. It’s an embarrassment, that so many people think this human-created world is the pinnacle of human achievement, and most days I know for sure that I really don’t belong here.
So, what keeps me around? The fact that I can make my own life exactly the way I want it to be. I’ve worked overtime for years, to get to a position where I can have a life that makes room for me. I’ve had to funnel a vast amount of energy into it, and it takes time and great spirit to defend it and keep it going. But doing that gives me a focus for all the anguish and sadness that’s a constant undercurrent in my life. It fuels me and motivates me to do more, to be more, to create more — and to do that in the ways I see fit, regardless of what anybody else thinks.
But most of all, the thing that keeps me from ending it all is curiosity. I’m too inquisitive and imaginative, to believe that Things As They Are is how Things Will Always Be. That’s highly unlikely. And I’m curious to find out what will happen, and what I can take from it.
Also, I know how fickle I am.
Seriously, if I were to throw myself off a bridge, there’s a 98.7452% chance I’d change my mind on the way down and kill myself against my actual will. I came close to doing that, about 5 years ago — I had the spot picked out and I was getting ready to get in the car and drive out to a bridge in western Massachusetts and jump. But then I thought about what would probably happen. I’d make the hour-long drive, and I’d get up on the cement span, and as I fell, I’d remember something that made my life worth living, but by then it would be too late to do anything about it, and I’d miss out on the rest of the experiences I could have had.
So, I didn’t get in the car and drive out to the bridge. I stayed at home and wished I were dead, instead.
I’m still here, as you can tell.
And I have more to say about this. But right now, I need to go to work and find out what’s going to happen nowin that swirling mess of neurotypical mediocrity.
I’ve been wanting to write something about Autism and suicide for a long time, but I’ve been reluctant to do so.
Everything I say can be incredibly triggering (not to mention convincing about why it’s preferable not to live, sometimes), and I don’t want it on my conscience that I convinced anyone to end their life sooner.
Or that I somehow encouraged / validated that choice.
Everybody has their reasons, of course, and I can’t take the blame for others’ choices. But I’m sure you know what I mean.
I could password-protect it and only let people in who choose to see it. But there’s now way I’ll put it out there in plain sight.
It’s much too grim. At least I think so.
That being said, what do you think? Should I write something about it? I’ve got a lot to say, and a lot of personal experience w/ dancing w/ this subject. And it might help people understand.
I just don’t want to be irresponsible with it and make the world any worse of a place than it already is.
What do you think? Let me know in the comments below.
Update 16. May 2018 – I did write a post about it. And I’ll be writing more. You can read it here:
Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.
The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.
I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.
The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.
Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.
So, the future… yeah. What does that hinge on?
Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.
We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.
Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.
I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.
I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.
So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.
Being different embarrasses our families.
They try to make us different — more like them.
If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
Ostracism, misunderstanding, violence. Etc.
Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.
I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.
There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.
And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.
I think that needs to change.
I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.
Certainly, it would help… but I think we can do more than that.
All the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:
Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.
It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.
I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.
Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.”
That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.
But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.
I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.
Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.
Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.
All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.
The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.
There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.
And there was no argument.
Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.
The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.
That’s all because I was raised by Autistic folks. Those were the Rules.
Today’s brief note comes from from Marcus Aurelius’ Meditations
IX. Consider how quickly all things are dissolved and resolved
… the bodies and substances themselves, into the matter and substance of the world: and their memories into the general age and time of the world. Consider the nature of all worldly sensible things; of those especially, which either ensnare by pleasure, or for their irksomeness are dreadful, or for their outward lustre and show are in great esteem and request, how vile and contemptible, how base and corruptible, how destitute of all true life and being they are.
So, things come and go. Pain comes and goes. Energy and vigor come and go.
One day, I’m fine. The next, I’m pretty much disabled. That, too, comes and goes. And there’s really no way to predict how things will be. I’ve tried. Oh, how I’ve tried. Doesn’t work. Best thing is to just stay loose and roll with it, so to speak.
“Consider the nature of all worldly sensible things…” All of them are ultimately resolved. They, too, shall pass. And if I wait for that to happen before I go on with my life, I’ll never get anything done. I won’t have a life worth living.
So, today, as my bones ache and I have less feeling and coordination in my arms than usual, I’m easing into my day… Doing my exercises that ease the pain and increase movement, so I can at least do the bare minimum… drinking plenty of water… getting some good food in me… doing less of a workout, this morning, but a workout nonetheless. And reading.
Reading things I love, that lift me up and brighten my day.
I’m sitting here feeling sorry for myself again. I’ve been reflecting on my life a lot, lately, thinking about how my life has gone… thinking about how it could have gone differently… thinking about what could have been done, if I’d just known about being Autistic.
Or rather, if I’d just gotten professional confirmation of what I’d suspected since 1998. What I’d confirmed by reading and thinking and reflecting and reading some more, along with taking various tests and quizzes and putting myself through my paces, time and time again.
I think the time in my life that was the most critical, was when I was going through menopause, 15 years ago. It was incredibly rough, and it really took its toll. And if I had understood more about how Autism affected me, not to mention how menopause affected me, and how the two intersected, I really believe my life would have gone differently.
Sure, there would have been upheaval. Yes, there would have been uncertainty. But I could have factored in the elements of my Autistic self, and figured out how my changing chemistry was interacting with it. I needn’t have been so concerned that I was losing my mind. Because some basic calculations and some simple tools could have helped me keep myself on track.
But no. The awareness wasn’t there. I didn’t “get” that all the hormonal changes would plunge me into chaos far greater than anything I experienced in childhood — because I wasn’t “supposed” to have that level of chaos, being an adult and all. I didn’t fully appreciate that my situation could be tracked and managed, both from an Autistic side and a menopausal side, and I could have gotten to know my full self better, as a result. Nor did I have the realization that fully understanding both Autism and menopause could actually ensure (not guarantee, but give me a fighting chance) that I’d be able to navigate the ever-changing world with objectivity and self-assurance, instead of a constantly increasing sense of dread and panic.
Yeah, things could have been very different for me. I’m sure of it. But there was too much I didn’t know. And I didn’t realize how important it was for me to go looking around for answers.
‘Cause I was in constant sensory distress. Overwhelm. Confusion. And I didn’t have a lot of bandwidth left for research.
Well, I came through it. And I know now how to address my situation both from an Autistic and a basic everyday physiology point of view. I’m doing it today, as I’m dealing with some nagging pain and fatigue, while keeping to a somewhat regular work schedule. I’m looking up answers to my situation, at the same time that I’m taking it easy on myself and cutting myself a break in important ways.
I can’t get those years back, that I suffered more than I could have. But I can certainly do something for myself now.
It’s been a strange day. Apparently, an eminent psychologist went on about Autism in some pretty bizarre ways — all the more bizarre, because apparently he helps determine direction for agencies(?)
He repeatedly talks about “autism” like this — see the transcript here. And I couldn’t just sit back and not say anything. Seriously, conflating “autism” with environmental or sensory distress experienced by Autistic people is very mid-20th century. And it’s got to stop.
I’m on a “tear” about how we need to stop referring to environmental/sensory distress experienced by Autistic people as “Autism”. It’s not Autism. It’s the result of external circumstances hobbling us as Autistics.
Take a look at what he says below, and note just how nonsensical his ideas sound, when we consider them in the true light of the Autistic experience. Italic emphasis is mine. For effect.
Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with autistic people in environmental or sensory distress to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that (inaudible) in your head for a bit
IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about autistic people in environmental or sensory distress as egocentric in the sense of a toddler and if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a n autistic person in environmental or sensory distress, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forwards from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that autistic people who end up in environmental or sensory distress, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe environmental or sensory distress in a way is a social coordination disorder there’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that autistic people in environmental or sensory distress often have difficulties with these systems but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess that isn’t quite right, that something is not quite right.
IM: So I am wondering about whether we should think about the idea of what I call a kind of internal exponential trauma caused by the sensory and the neurological challenges in the brain of the autistic person in environmental or sensory distress one of the reason I am so keen on this idea is, this idea which I think a lot of us have who work with autistic people in environmental or sensory distress, is that somewhere inside that person is a, dare I say it, normal person and this is the experience of parents, the desperation (inaudible) is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)
IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists by academic psychiatirsts in places like London and America and stuff like that is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.
IM: Ok so I am just going to summarise, In environmental or sensory distress my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that autistic people in environmental or sensory distress are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and are we having possibly a traumatic encounter there which is exponential because of the massive development that is taking place in the first year of life.
Anon (Name to be added if they give permission): My name is (deleted), I am a clinical psychologist and Ive spent most of my working life asking autistic people in environmental or sensory distress what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have autistic people in environmental or sensory distress and people with dyspraxia and dyslexia and adhd in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wring. And to start to move back to things like refrigerator mother and prevention of environmental or sensory distress, I think is not appropriate.
(Lots of applause)
IM: Shall I respond?
IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted like that. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our eyes open about environmental or sensory distress and I do not mean to cause any offence by saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years so you know that is just my experience. I am worried that these people are being traumatised by something that is going on in side their minds, that’s all I’m trying to say to you, so thanks a lot (applause)
So, yeah… If you look at Autism just as something that occurs in the brain, you get these kinds of ideas.
But if you understand Autism as something that shapes your every experience in a physical, mental, emotional, and spiritual way (with an emphasis on the physical which can lead to a ton of distress), that changes it, doesn’t it?
It changes everything.
Which is where I’m hoping the Autism research community goes. Away from the “egocentricity” idea. Away from the “own agenda” concept. Away from the belief that meltdowns are “tantrums” which we choose to leverage to get our own way. “Creating havoc” and all that.
The good part is that people are speaking up about this.
Well, this is interesting… I’m realizing more and more, just how much my hearing difficulties have affected my day-to-day life, interactions with people, my willingness to engage with others, socialize, try things, and get an education.
I mean, yeah, my overall sensory issues have had a really … dampening… effect on me. Experiencing light touch as pain can be a source of constant distress. Balance issues put me in a constant state of hypervigilance, when I’m “off”. Light and sounds can be painful, too. There’s a reason I go food shopping every day — so I only have to be in the store for 10 minutes at a time (and yes, it works!). All of that can add up over time to a pretty significant trauma load. Even the little traumas, if they aren’t cleared out of my overtaxed system, build up to something bigger and badder than the individual elements, themselves.
And then there’s my hearing. Such as it is. Most of what I hear, if I’m not listening intentionally, is a muffled mmmmmfffftgrrrrlllllnnnnb. And yes, it is maddening for people who deal with me to have to repeat . themselves . every . single . time . they . say . something . to . me . unannounced. I really feel for them. Because sometimes you just want to feel like you’re being heard, without having to repeat yourself every . single . time.
But what can I do? Unless I’m paying attention to what someone is saying to me, I don’t pick it up. I just don’t.
And it’s getting to be more and more of a pain in the neck. As time has passed and the high tech industry has evolved, I’m finding myself in more and more “leadership” positions, where I’m directing a bunch of lower-paid folks (often on the other side of the world). I’m also responsible for communicating progress to higher-ups. And yes, this is a massive pain in my hind-parts, because those are the least-capable parts of me — phone calls with people who have thick accents over bad internet connections… distilling all the details of the past week in can-do Powerpoints that press all the right “comfort buttons” in hyper-controlling people at a higher pay grade than myself… Keeping lines of communication open with people of all types…
What did I do in a past life to earn this steady stream of demoralization and practically built-in failure?!
I ask you…
It really is kind of funny, if you think about it. Either that, or cruel. Good thing I’m post-menopausal and no longer hormonally inclined to fret about not getting everything right. Good thing I care a lot less about what other people think, and I’ve lived in my body/brain long enough to know not to trust all the terrible things I say about/to myself. They haven’t fired me yet, so I guess I’m doing okay. Plus, I’m ahead of the game, because even at my worst, I do a better job than a lot of non-Autistic folks do when at their best.
So, I’ve got that going for me.
The only problem is… I can’t hear for shit, sometimes. Seriously, I can’t. I don’t think it’s gotten worse for me than it was when I was younger. It’s just that now I have to talk to people a lot more. For something like 15 years, I was a developer, so I could just communicate with my computer and code. Not worry about the people stuff. And I wasn’t saying “How’s that? Can you repeat please?” every 1o minutes.
Ha! I should count how often I do that, these days. Might be eye (and ear) opening.
Anyway, I realize more and more, these days, just how much my hearing difficulties have affected my life. I avoid all kids of stuff because I might not hear properly, and I might A) make a fool of myself, B) get into trouble, or C) actually be in danger. I can’t do work that involves other people and power equipment, because I might not hear a warning, and I might lose a finger… or an arm. That’s a bigger loss than I like to admit, because I love manual labor. And I would love to be able to support myself while working with power equipment. But at this point, I don’t think that’d be safe.
I also don’t go out much, because I might have to interact with people, and the only thing more lonely than being around people who aren’t trying to connect, is being around people who are trying to connect, but I have no idea what’s going on, because I can’t hear them properly. Sure, I can cue the canned greetings and response, but I’d really like to be able to do more than that. But people just don’t have the time. And when I keep asking them to repeat themselves, they seem to get tired of dealing with me.
I’ve been thinking about talking to my doctor about this. I probably should, because maybe there’s something to be done. I really worry about interactions with the police and other first responders, not to mention other authority figures. Having trouble hearing is a great way to get shot by the police, based on recent history, so yeah — in the interest of living a full life, I should probably look into this.
I just have to prepare properly. I think I’ll write up a description of my symptoms for my doctor, describe my difficulties, and ask her if there’s anything to be done. It might be nice to have some sort of assistive device that could block out all the ambient noise, so I can concentrate on what’s being said to me. The idea of wearing a hearing aid worries me, first because of the distracting feel, second because it can call me out as vulnerable and people might try to take advantage of me, thirdly because I really don’t want people to pity me and treat me differently.
But other people deal with that all the time, so maybe I should quit being so squeamish.
Anyway, that’s my latest “thing”. The hearing situation. Or inconsistent lack thereof. I’m going to learn a little bit of ASL, I think, because I’ve been wanting to do that for some time, now. It’s something to add to my overall skillset. I need skills. And I also need to widen my world a bit.
9. Sickness is a hindrance to the body, but not to your ability to choose, unless that is your choice. Lameness is a hindrance to the leg, but not to your ability to choose. Say this to yourself with regard to everything that happens, then you will see such obstacles as hindrances to something else, but not to yourself.
10. With every accident, ask yourself what abilities you have for making a proper use of it. If you see an attractive person, you will find that self-restraint is the ability you have against your desire. If you are in pain, you will find fortitude. If you hear unpleasant language, you will find patience. And thus habituated, the appearances of things will not hurry you away along with them.
Indeed. I tend to lose sight of the fact that all my sensitivities don’t prevent me from choosing what to do with my life, and finding ways to deal with them. The simple fact of my life, which is my guiding principle, is that if I can identify that something is a problem for me, and I know what alternative I want in its place, then it’s incumbent upon me to do something about it.
I’m pretty resourceful, when it comes down to it, so I can’t very well make excuses for my life going the way it has, when I’m actually capable of A) seeing when I’m going off the rails, and B) coming up with alternatives.
Now, certainly, it’s no fun to have to constantly navigate a world that’s designed for people completely unlike me. But one of the reasons I left my parents’ house and took off on my own, was precisely because I knew that out there in the world, I could fashion my own environment that suited me. I know what bothers me, I know what makes my life difficult. And with that knowledge, I can design a life that works for me.
Of course, not everything is going to be suited to my liking all the time. But so what? The times when things are extremely challenging, are the times when I build up strength. Provided I give myself time and space to recover and assimilate all the lessons, the challenges just make me stronger. More resourceful. More determined. Maybe it’s just my character. Or maybe it’s because of how I was raised. Whatever the reason, when I look back at the worst times I went through, those were the most valuable lessons.
In some cases, you get what you pay for. And I’ve paid dearly, I can tell you that.
It’s all been worth it. Some of my experiences have felt like they tore me to shreds, but you know what? I’m still here.
And I’m going to stick around. There is no way I’m going to succumb to the dire predictions that I’ll die 20 years earlier than my non-autistic peers. That’s just ridiculous. We get to choose what we do with ourselves, what choices we make, what direction we take. And if I choose to do things that I know are not good for me — like avoiding certain foods because of the textures, but not supplementing my diet in other ways, or like avoiding exercise because I don’t have the energy — I have only myself to thank for vitamin deficiencies or poor physical condition.
Some magical being in the ethers isn’t going to descend to earth and save me from myself. If there are things I have to do, because the laws of physics and human anatomy require them, then one way or another, I’ll do them. It’s my choice. And I have the capacity for reason, discernment, to find alternatives, if one way doesn’t work for me.
So, with that said, it’s time to get on with my day. I find out what the deal is with my job — new paths are being charted for us at work, and the direction we’re taking actually makes a whole lot of sense for me.
Maybe I don’t have to leave my job, after all… Even so, I have a video interview for another position on Monday. It’s all a dynamic process.