… because frankly they don’t believe it’s even possible.
I have a whole range of projects going concurrently — art, writing, publishing, web / app development, historical studies, home repair projects, nationally syndicated broadcasts, 9-5 high tech programs — each of which is deeply important and symbolic to me, and really places me in the world.
However, I can’t really discuss it with other people much (especially neurotypical / non-autistic folks), because they frankly don’t realize how much is actually possible, and they don’t realize how important this whole range of activity is to who I am and how I am in the world. They see it as a sort of neurosis, a compulsion, a sign that something is terribly wrong, rather than recognizing it means that something is wonderfully right.
Because I process, because I see things differently, and because I first said about understanding how things are put together before I commence, I can assemble and accomplish an amazing array of things, which most neurotypical individuals can’t even begin to fathom. And if I talk to them about what I’m doing, they can react with a combination of incredulity and disbelief and also insecurity. Among professionals, that can translate into pathology. And misdiagnosis. And prescriptions of meds that are supposed to “fix” me.
I have no wish to be more pathologized than I already a.m., and I have no desire to constantly try to convince neurotypical people of the fact that yes, it can be done, so I just don’t bring up my Work in conversation. The net result, is a deep and lasting sense of isolation in the world, a sense that I am underestimated and misunderstood, and that I could never be properly “estimated”, because it’s impossible for people to understand it’s me.
I keep so much out of sight, away from non-autistic people for the sake of self-defense.
This becomes an issue when seeking help from mental health providers, especially because they can never really build a comprehensive understanding what I am and what I do and what I am capable of achieving, because I am so busy protecting myself from the ill-effects of their insecurity, their disbelief, and their eagerness to pathologize traits about me which are pretty normal, even core to my personality and identity.
I live in constant anxiety about people finding out just how much I do, and how well I do it, because they cannot — will not — wrap their heads around what’s possible. And I have a hell of a time connecting with other equally driven individuals, because I just run out of steam. Battery low. In the red, by the end of each day I’m out there in the non-autistic world, making a living.
Will I ever be recognized for what I do — can do — have done?
Executive function came up in a discussion we’ve been having on Twitter about what it takes to get #ActuallyAutistic culture and understanding and differences out there to people who want — and need — that connection.
Non-autistic folks need new ways of seeing us that aren’t pathologizing and dismissive and degrading. Too much has been written and said about how awful it is to live with us, work with us, interact with us. And our gifts and talents are sometimes treated as a unique one-off, worthy of awe (and a little bit of shock). Also, our “superpowers” are the thing that seems to qualify us to be treated as human beings… which means that Aspies and Auties without magical superpowers that leave allistic folks speechless, get brushed aside — and further stigmatized.
There’s a huge disconnect between the two worlds — like parallel universes, which (by the very definition of parallel) don’t intersect.
Autistic folks need connection with others like us. If you go on Twitter and use the #ActuallyAutistic hashtag, you’ll find us. Also, #autistic and #aspergers will bring up individuals and conversations. But let’s not forget — not all autistic folks have quick and ready internet access, not everyone is into social media, not everyone has a Twitter handle, or even knows how to get on Twitter.
We also need connections with others not like us. As cozy-comfy as it may be to hang out with your Tweeps day in and day out, the rest of the world is still out there. And there are some super-cool folks who are our allies and just plain good buddies in the non-autistic population. Furthermore, we’ve got to eat, sleep, live in safety, pay our bills (well, ideally, anyway). So, we need to find and keep jobs. That means, for the vast majority of us, we need to have some skill at dealing with non-autistic people, non-autistic systems, non-autistic expectations, goals, priorities, etc.
I’m getting tired just thinking about it — which brings me to my point (which someone presciently raised on Twitter) that executive function issues are a major factor in our not being able to advocate for our inclusion, participate, and interact effectively with the non-autistic world.
Ah, yes… those executive function issues. To quote Wikipedia (bold emphasis is mine):
Executive functions (also known as cognitive control and supervisory attentional system) are a set of cognitive processes – including attentional control, inhibitory control, working memory, and cognitive flexibility, as well as reasoning, problem solving, and planning – that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals. Executive functions gradually develop and change across the lifespan of an individual and can be improved at any time over the course of a person’s life. Similarly, these cognitive processes can be adversely affected by a variety of events which affect an individual.
Executive function plays a huge role in being able to make yourself seen and heard i the world, as well as doing the things that help you advocate for yourself. When you have trouble maintaining attention on One Single Thing, you have trouble keeping from blurting out stuff that you instantly regret (or regret even as you realize you’re blurting it out), and your planning, problem-solving, and follow-through abilities are hosed (in part, at least, due to the stresses brought upon you by executive function difficulties)… well, it’s a little tough to make your mark in the world.
It takes considerable executive function capabilities to do even basic things, and that’s one of the big areas we are impacted. It blocks us. It defeats us. From the inside out. And it can be crushing. Especially over years and years of struggling.
You can end up like so many of us — including me — chronically under-employed and struggling at relationships and keeping your act together, which accumulates over time and builds up to a significant issue, on down the line.
This is why I think early diagnosis is so important for autism — especially women and men who don’t present in the classic ways. A lifetime of executive function issues which are never recognized or addressed, can have an ultimately debilitating effect on you and everyone around you. And the older we get, the more vulnerable we are. It’s just not good — especially when you enter your later years without a financial safety net and poor interaction skills with professionals like doctors, lawyers, and others who have considerable sway over your life.
This is not a joke. It’s a huge deal. How the heck are individuals supposed to build a solid foundation for their elder years, if they can’t get a solid foothold on their issues, recognize them, and work on them? Executive function is something you can improve — but not if you don’t know it doesn’t exist.
Likewise, how the heck are autistic folks supposed to self-advocate and create a cohesive community, if they’re struggling desperately with just the basics of life, like planning and setting goals and doing what you need to do to get there. One of my “beefs” about a lot of self-improvement talk, is that it treats goal-setting and achievement like it’s all a matter of will. Actually, there’s a complex set of capabilities that play into that, and you need to develop them, in order to do all that stuff that the motivational gurus make sound so easy.
But if you never realize you actually have executive function problems, you can end up — like me — trying over and over to set goals and achieve them, only to find yourself confused, exhausted, and depleted for no apparent reason. And then you think, “Well, I guess I’m just a loser, after all. Why even bother?” … which is a self-fulfilling prophecy. And it’s dragging down a lot of people.
It’s dragging down the autism community in a very big way.
We’re all affected by it.
So, what are some possible ways to address this?
Stop making diagnosis so f*cking impossible to get – especially for girls, non-stereotypical boys, and adults who need help. This applies mostly to the US, where diagnosis is pretty available for boys, but if you’re a girl you can end up struggling for years and years. And if you’re a full-grown adult, you have to part with a whole lot of money (up to a month’s earnings for some — maybe even more), in order to get an official diagnosis… if you can get it at all. It’s 2106 people. There’s emerging research — and testimonies from countless late-diagnosed women and men — about how under-trained clinicians are. This is not rocket science, people. It’s just not. Stop being stupidly stubborn, and cut us a break, already. You don’t have to “fix” us when we’re diagnosed. We adults can do a lot for ourselves, believe it or not. Just cut us a f*cking break, already.
Likewise, we need to recognize self-diagnosis as valid, in certain cases. I know this is a hot button for some people. I hear folks talking about how being an Aspie is a badge of distinction, but I’m not sure what world that’s happening in. Maybe the gaming world? Dunno. Anyway, given the woeful lack of education among therapists, clinicians, healthcare providers, and pretty much all the established health professions… and given the degree to which autistic people actually know themselves (news flash, we actually do)… it only makes sense to take us seriously. When we show up at the doctor with a sheaf of papers full of notes and observations, we need to be treated like scientists, not attention-seeking malingerers who pose an insurance fraud risk. That’s unacceptable, especially considering the pain and suffering that denial of autism diagnosis — or worse yet, a misdiagnosis which may involve consciousness-altering meds) — can visit upon the heretofore trusting patient/client. It’s just no good. Not for us, not for anyone who has us in their life.
Develop systems to establish our space in the world. As in, find out the best way to do things like advocate, signal boost, publish, raise awareness, and then do them over and over and over, the exact same way. The allistic world needs to be told the exact same things at least six times, before it sinks in. So, we need to keep reiterating on a core and central message that’s cohesive, consistent, and easy for distracted people to “consume”. WordPress comes to mind. It’s a publishing platform that comes “pre-loaded” with interconnected community via tags and the Reader. Also, social media sharing — passing along the word about ourselves and our world, connecting with others, and developing a “cadence” of communication about who we are and what we’re about. Systems are something we autistic folks excellent at developing — perhaps because we have so many executive function challenges.
Know who our friends are. And put down the pitchforks. Personally, there’s a whole lot of stuff going on in the world I’m none too keen on. And I can be sharply critical of stupid sh*t people do and say, especially when it comes to autism and neurodivergence. Thing is, I can get a little overwrought, and I can quickly jump to wrong conclusions about someone’s intention. The ensuing storm of outrage (I love the German word Empörung – it sounds like what it means) doesn’t do much to build alliances with people who genuinely would like to help and have the means to do so… but don’t have as much of a clue as they think they do. I see / hear what seems to be a sort of assume-they’re-hostile, antagonistic approach in a lot of autistic discussions online and in person, but I’m taking responsibility myself for my contribution to this dynamic, because I might actually be misinterpreting the intentions and words of others. And I know that I haven’t helped matters, in that regard, over the years. I’m working on that. I want to do better.
Anyway, those are a handful of things we might do to strengthen ourselves, our autistic identities, our autistic culture. There’s plenty more, for sure, but those are the ones I can think of right now.
Let me first say that, in no way, shape or form, am I saying a dark and twisted sense of humor is a bad thing. I think it’s fun! It really brightens my day in the most challenging of circumstances. And at times, it’s so exuberantly bleak, that people are alarmed. I have to tell them to calm down. I’m not REALLY planning to cut off my left pinkie finger to collect accidental dismemberment insurance, so I can pay my prescription drug bills for the next year. But the thought of doing so gives me a good laugh, and a big sigh of relief. The only problem is, after a year, I’ll need to cut off another finger (or maybe just part of one – I need to check my insurance coverage details), to pay for more meds. It never ends. I’ll need to budget my body parts carefully. And choose wisely, so I don’t accidentally cut off my ability to make a living. Voice dictation only goes so far, after all…
Okay, okay, calm down. Like I said, I’m not REALLY planning to cut off my left pinkie finger to collect accidental dismemberment insurance. I’m just thinking about all the different Plan B’s I might have handy. Or maybe that’s really Plan B, Plan C, Plan D — since you can’t have more than one Plan B. There’s only one “B” in the alphabet – just like there’s only one pinkie finger on each hand.
Anyway, I’ve noticed that when things are very tight with me, and I’m feeling boxed in — which is actually not infrequent — I turn to dark humor. I joke a lot about death… about finding either elaborate or exciting ways to finish out your last final days, so you go out with a fun “bang”… about horrible things happening.
It all sounds pretty dire to anyone who doesn’t share my same sense of humor, but to me, it’s just a reflection of my life as it is, as it’s been, as it’s always seemed. I’m stuck, trapped, stuck in a veritable hostage situation, playing along for the sake of not getting my ass metaphorically or literally whooped, trying to make the best of a genuinely problematic situation. Life can be sweet, I’ll grant you that. But for people like me, locked away in our camouflage cages, with precious little chance to venture out when other “neurotypical” people are around, it’s far less tasty and delicious than all those YouTube animal babies vids would have us believe.
I didn’t know I was on the spectrum until I was about, oh, 32 years, 8 months, and 6 days old. Give or take a week or so.
I’m now 51, so I’ve known I’m on the spectrum for, oh, about 18 years, 6 months, and 5 days. Roughly.
I tried to get diagnosed in 2008, but that went badly. And essentially, I’ve been muddling along this whole time. Knowing my own situation helped in certain key ways, like with job selection, friends selection, and structuring my life in ways that make sense for me. But that’s all been “autistic” — self-directed — modifications. Nobody else has really helped me out with it. And the people I hoped would/could help, simply refused.
Yeah, I’ve felt blocked in. For a long, long time. And a certain sense of desperation has followed me through the years. I’ve been subject to ongoing depressive states since I was little kid. Things are rarely all sparkly and shiny-clean for me. I’m not sure if they really are for anyone, but when people describe what depression looks and feels like, I’m like, “Isn’t that just how everyone is?” Because that’s very much like I’ve always been. It just doesn’t show. Because if you want to have a decent life and get along and not turn into the butt of others’ teasing and persecution, you go along. You cover up. You camouflage, mimic, and blend.
So, to all those psych folks who say women are so good at blending in and hiding our autism, so that’s why they missed us… they can kiss my autistic ass. Because I never did it for fun or out of “good taste”. I did it to keep from being violated. I didn’t do it, to advance myself. I did it to keep from being beaten, persecuted, preyed upon, and cast onto the rubbish heap of society. I didn’t sprinkle magic fairy dust around myself for the fun of it. I did it because I didn’t want to die. Because I’ve always been keenly aware that if I didn’t watch myself, if I didn’t manage myself, if I didn’t keep myself under wraps, some pretty sick and distressing things could (and possibly would) happen to me.
And that’s a hell of a reason to do anything.
But that’s the deal with me. It’s always been the deal with me.
When you’re contemplating your own erasure on a regular basis and treading water as fast as you can to get over every advancing wave in that roiling sea of sensations and surprises, death and pestilence and existential horror and all that ilk kind of become kind of funny in their own way. Like the Monty Python “Meaning of Life” movie, when the Grim Reaper comes to visit. That was my favorite scene. Because I could relate.
I’ll have to watch that again. I need a good laugh.
When it comes to online discussions about autism issues, I regularly interact with two realms.
The first realm is one we’re all familiar with: the day-to-day articles and conversations and debates that take place regarding a wide range of spectrum issues. Causation, research, personal stories, opinions … just the usual autism topics that you come across as you scroll around blogs, and Twitter, and Facebook.
The second realm consists of an invisible community. It’s made up of people who are absorbing every discussion, every debate, every article … yet they are not participating, not sharing their own ideas. They’re just there, quietly and attentively taking it all in.
This second group is made up of suicidal autistics.
This is not just an invisible community, it’s a large one. One recent study found that two thirds of spectrum-diagnosed adults surveyed had contemplated suicide; 35 percent had actually made plans or an attempt.
And given the huge number of autistics who go undiagnosed, due largely to gender and racial bias structured into the diagnostic process, the rates of suicidal thought and action may actually be much higher.
FROSTED GLASS – A FILM ABOUT THE UNSEEN EVERYDAY WORLD
This campaign is an attempt to raise money to make a dramatic film that looks at the stigma and misunderstanding that can wreck the lives of people with mental conditions. The film takes true events as it’s source matertial and is designed to tell a story of that which is all around us, but seldom discussed.
A quarter of us will have to live with a mental condition at some point in our lives. The condition I live with is Asperger’s Syndrome. Asperger’s is a form of Autism that has been described as ‘looking at the world through a frosted glass window’.
Asperger’s and mental conditions in general have a negative affect on many lives.
I have felt compelled to create this film to show how it can feel. One of the inherent problems with conditions like this is that there can be few discernible physical signs. This is one of the contributory causes to the misunderstanding and stigma.
I have had many experiences that have been caused by this kind of misunderstanding. I have been bullied, turned down for jobs and thrown out of accomodation all because of this misunderstanding. Many others in this world have had comparable experiences.
However, I have also been lucky. I have managed to come through and been handed opportunities that many people never receive.
I believe that if people can see a visualisation of the effect of metnal conditions has on people, they will be able to understand it better and tolerate people better.
At the worst stage of things I started writing poetry describing how I felt. It didn’t make be happy, but certainly happier. Some of the poems that I have written are performed in the film. Through words and semi-surreal imagery I believe I can show it for what it really is, and then we can all understand it better….
The problem can be best summed up this extract of an interview given by Spike Milligan and Anthony Clare:
AC – “You’re like so many people who suffer, you must get very irritated with people who say ‘Snap out of it’.”
SM – “That’s silly…it’s like going round with a broken leg – being told ‘Come on, walk, you’ll be alright’.”
AC – Why is it so difficult to describe?
SM – “It’s invisible, there’s no written diagrams. It’s an abstract, it’s a sensation…”
Of all the post war writers and comics, Spike Milligan is acknowledged as one of the greatest. He suffered with severe mental conditions for most of his life.
I have felt compelled to create this film to show how mental conditions can feel. As I mentioned above, one quarter of us will live with such conditions during our lives, and yet the stigma and misunderstanding leads this quarter to remain a hidden quarter.