Blocked! Another big reason #autistic folks so often get stuck

picture of human head with neural pathways inside and outside the head
Everything can look like a big old mess, with no clear path to follow

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.

Tweet: Our #autistic “superpowers” are the thing that seems to qualify us to be treated as human beings… without superpowers, we're brushed aside.Tweet: Our #autistic “superpowers” are the thing that seems to qualify us to be treated as human beings… without superpowers, we’re brushed aside.

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.

Tweet: Early diagnosis is so important. A lifetime of executive function issues which are never addressed can have a debilitating effect.Tweet this: Early diagnosis is so important. A lifetime of executive function issues which are never addressed can have a debilitating effect.

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?

  1. 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.

    Tweet: You don't have to Tweet this: You don’t have to “fix” us when we’re diagnosed. We #autistic adults can do a lot for ourselves, believe it or not.

     

  2. 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.

    Tweet: When we show up at the doctor with a sheaf of papers full of observations, treat us like scientists, not attention-seeking malingerers.Tweet this: When we show up at the doctor with a sheaf of papers full of observations, treat us like scientists, not attention-seeking malingerers.

  3. 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.
  4. 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.

It’s a long weekend. I need to pace myself 😉


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3 thoughts on “Blocked! Another big reason #autistic folks so often get stuck

  1. Tim

    Agree with almost everything you’ve written here (and very eloquently too), apart from the bit about those self-diagnosing.

    With regards myself, I had to have it pointed out to me by the psychologist treating me for depression and PTSD at the time, and by my daughter, that I was on the Autistic Spectrum, and I was initially very opposed to it. I didn’t want to have it. It took a little time, plus testing in various ways (I scored 183 on the RDOS test), and then the formal diagnosis the following year to convince me.

    Conversely, I’ve come across too many self-diagnosed who desperately want to have the Syndrome, tell everyone they do have it, and yet clearly don’t. e.g. one guy had tried to get a diagnosis from two psychologists, separately, who both told him he didn’t have A.S. yet still he tells people he has the Syndrome anyway because “he knows they were wrong”. Another disgusting individual, clearly lying about being on the Autistic Spectrum, did nothing but cause trouble to a social group for these people and also turned out to be a paedophile using this disorder to hide behind in case he got caught. They take up valuable resources from those that do have Autistic problems, and also bring a degree of discredit to the whole process with their dreadful claims.

    Liked by 2 people

    1. VisualVox

      Yeah, I can see your point. It’s just a shame that those people would wreck it for others who genuinely need to identify and work with their issues – but may not have access to the resources, and may not ever meet a professional who is qualified and capable of diagnosing. It’s a very complex issue, but there are many, many individuals who are responsible with their self-assessments. Keep in mind, that you had access to a qualified professional through your child — a common thing, but not possible for some of us. It’s not easy. But pushing people out who really need community and support for legitimate reasons, because of the terrible exceptions out there… well, that places an inordinate burden on those who may have no other choice or recourse. I recognize self-DX. I was autistic before my autism assessment last month, and it just validates what I already knew.

      Liked by 2 people

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