"Pitchforks for sale! Pitchforks for sale!" How The Neurodiverse Get In The Way Of Their Own Success
Come and get 'em. Want to know why it's so hard to advance neurodiversity acceptance and inclusion? Look in the mirror.
I got my first ‘haydur’ comment from this post after putting it on Reddit in response to someone asking “Why do those who are ND struggle so much when it comes to dating?” My hater felt so compelled to comment they took the time out of their day to create an account on Substack just so they could call me a bitter bitch. Sounds like a reactive response to me and hearing the truth hurt. But know what hurts more? Denial. Just because the truth is uncomfortable, doesn’t make it any less valid; it’s just uncomfortable to hear.
Alrighty then; okie, dokie pokie, how’s about we play a little game? C’mon now, it will be fun, trust me. Wait a sec while I adjust the lampshade on my head and climb up on the table. Ahem. “Ok, everyone gather your supplies. You’ll need some red string, about a foot long. We’re gonna have a rave!” My daughter would have so much second hand embarrassment for me right about now. “Good. Now that I’ve got your attention …”
“Ok, take that red string and hold it up a bit, till about underneath your cheek. Got it? Good. Now, still holding that red string, I want you to walk over to the closest mirror you can find and go stand in front of it. Ok, this is the good part. Are you there yet? Can you see the red string in the mirror? You can? Great!”
Now you have your answer.
I know that most of you can never seem to see yourselves in the reflection; that’s why I asked you to get that red string so when you look in the mirror, you’ll see something and know it’s you holding it. Sorry, am I not being literal enough?
You; you are the both the source of the problem and the solution.
I spend time on different forums and sub-reddits that talk about autism and neurodiversity and I see the same posts over and over again. Some of them are truly heartbreaking. I’ve spent plenty of time writing responses to someone standing on the literal ledge who just needed to be seen and heard in that moment to get through another day.
Some of them are combative with an ‘us’ against ‘them’ mindset believing neurotypical behavior is the bane of existence. They should put little pitchfork flairs next to their names. They’re the little shits who downvote any posts that have the temerity to ask for a mindset of grace and unity. Oops, sorry, too much big word; me try better. They’re the little assholes who downvote posts that don’t agree with their angry mindset as they sit there, arms folded across their chest, pouting like a 5 year old who was just denied extra screen time.
Look at that red string in your hand again … you.are.the.problem. Not, you are the problem because you’re ‘bad’ but because you refuse to fix it. Oh and before I need to get out the windex and paper towels to clean off the spittle from the mirror after the sputtering of the usual deflective excuses begin about how I don’t understand; (hold on, wait a sec need to put on my magic deflection bracelets. They deflect bullshit excuses and can differentiate between can’t versus won’t. Ok, I’m ready. Fire away…)', I’m autistic too. So yeah, I more than understand. In fact, I understand a little too well. I understand in a way that no one should ever have to understand which is why I write about it in the first place because things will never change unless it’s talked about honestly and realistically.
I didn’t get diagnosed until I was in my mid 50’s. Wanna know what life was like growing up undiagnosed at a time when the only thing people knew about autism was from those whose difficulties were more outwardly visible versus someone like me whose struggles are less outwardly perceptible? It absolutely, positively, donkey balls sucked.
We didn’t have the concept of a spectrum at that point and how it’s all autism and there’s not much difference between ‘autism’ and the public’s perception of, ‘autism autism’ whatever the fuck that means (someone actually said that to me once because they didn’t believe I was on the spectrum because I’m so high masking). So I’ve got a message for them:
It’s all autism you rubes, the differences lie in the type of supports needed which vary greatly by each person.
Say it with me “Spect-rum”. Here, I’ll make it simpler - it’s the difference of not getting your coffee with oat milk non whip versus half and half whipped - to me, it’s all ‘just’ coffee, but to you it matters. Apparently, a lot from some of the meltdowns, oops that’s right, only autistics have meltdowns - allistics only have justified reactions - from some of the ‘reactions’ I’ve seen when the order is messed up. See the parallel now? Just because I don’t like coffee and truly don’t give a crap if every single criteria barked at the barista is met or not, doesn’t mean it’s not important because it’s important to you. Welp, that’s how it feels for those of us on the spectrum with lower support needs. They might seem insignificant to you, but to us they’re crucial for work-life balance and self-care. And I’ll let you in on another little secret - do you know who would be the least likely to have a public meltdown reaction because the non whip was whipped? The one on the spectrum that’s who; so cut the shit already about how we’re all either too emotional or have no emotions like a robot. If you use the qualifier of ‘all’ then it means ‘all’ versus ‘some’ which is what you really mean. Some means not all, which means not everyone, so stop treating a group that is not homogeneous as one that is. Oops, big word again - stop treating us as if we’re all little carbon copies of whatever erroneous preconceived notions you have about what it means to be autistic. What you don’t understand would fill a book. What you do understand would fill a pamphlet. In large font.
Not all of us take everything literally so I do understand that all doesn’t always mean all and is just a figure of speech, but it continues to propagate an inaccurate stereotype. Some of us can even do sarcasm.
Oh hang on a minute; do I see my autie brethren tittering out of the corner of my eye? I’m not done with you; you and your red string come right over here and sit down next to me. Come on, I won’t bite. I’m going to assume y’all came and sat down if for no other reason, out curiosity of what comes next, and not because I had to use my Mom voice by adding, “NOW”.
Want to know why society doesn’t truly understand our needs yet? Look at that red string again. Other than downvote and gripe, what have you done to change the stereotype?
Not sure if you’ve ever noticed the name of the ship you’re on if you continue to resist embracing a paradigm shift about your responsibilities - it’s the same one I’ve been on and you’re right there with me on the R.M.S. Titanic - of life. Don’t shake your head no. You absolutely are. If you’re going to just roll your eyes in defiance, just keep on rearranging those deck chairs ‘cause you will absolutely metaphorically go down with the ship.
Regardless of whether or not you are aware of your diagnosis or only suspect it, even if you don’t know but know you have struggled in certain areas; the problem isn’t the struggle, the problem is refusal to acknowledge its existence and to put a plan together on how to make improvements. That is going to require a certain amount of honesty and personal accountability. From YOU, regardless of whether or not society is willing to accomodate you.
Here’s the mic drop version: I don’t care how smart you are, how talented you are, how naturally gifted you are; if you do not have the social skills at or equal to those other talents, then it means absolutely nothing. Squat. Bupkus. You’re going to be pizza-ing instead of french-frying while trying to ski through life and not be having a very good time. Anyone not telling you that truism is doing you no favors.
Complaining about the unfairness of it all is nothing but a fruitless exercise and waste of time because it will never change the fact that good social skills are the portal and lack of them is the difference between a life that is satisfying to one that is miserable. I read the agony posts on the boards and while social media as a source is more than likely only a small representation of the group and not representative of all, my eyes, ears and experiences with those of us wired differently in many different settings, tell me otherwise.
Oh, I know only too well how most of us got here often feeling despondent about our lot in life. We were left to ‘figure it out’ on our own by society and ended up socially feral because we never got the hidden curriculum handbook that seems to be onboarded with being neurotypical. In order to just survive, we frequently replaced skills that are not intuitive to us as they are with most, with maladaptive coping mechanisms. Even if you’re one of the lucky ones high functioning enough to hold well paying, steady employment, without good social skills also; you’re screwed, often feeling frustrated and bored not sure how to navigate advancement. Social skills are the hammer, and willfully resisting learning them are the nails. Hammers pound nails and over time your life is going to feel like you’re nothing but a pounded nail as the disappointments in career and relationships start to pile up.
I am the cautionary tale you don’t want to become.
Let’s go full Monty - why am I so sure, well, er, actually it’s know, that poor social skills will be your undoing? Because not only have I read countless posts on various forums and been a part of support groups for years, but because I’ve also lived it. And for me, I’m quite sure it has not been a life well lived. That’s how I know. It’s been a painful, invalidating, invisible life completely littered with ‘could have beens, if only’. Is that what you want? Then you just keep sitting there with your arms crossed, manifesting destiny. Oh, so you think it won’t happen to you huh? So please, do tell me what is your special belt and suspenders plan to guarantee that it won’t? ‘Cause from what I’ve seen, there’s a whole lot of you out there writing things that tell me otherwise. From all age groups. Your 20’s turns into your 30’s quickly. Then watch how it’s your 40’s and then 50’s and beyond while you’re still be bitching about how unfair and miserable it all is while doing absolutely nothing to change it.
I’m not blunt because I’m bitter; I’m bitter because I wasn’t blunt enough. I should have been blunt like this sooner; at least it would have given me a fighting chance when there was more runway in front of me than behind me. In reality, I’m not bitter but rather determined; determined to affect meaningful change. Somehow though, that assuredness always seems to get labeled bitter when the truth bombs start dropping. For far too long now, our community has tried doing things a certain way and success has been inconsistent at best. Might be time for a different approach.
The famous quote “Insanity is doing the same thing over and over again and expecting different results” has been attributed to Albert Einstein. Einstein; who is generally accepted as ‘most likely’ to be diagnosed as a high functioning autistic by today’s standards. I’m just going to sit here and adjust my bullshit deflection bracelets for a few minutes to let the irony of that little ditty hang out there for a few minutes. Honest to god, this stuff writes itself. I could write a term paper on irony just from that.
The refusal to not just accept, but to even acknowledge the reality that there’s any problem at all reminds me of a scene from the movie Re-Animator based on H.P. Lovecraft’s book. The movie is a cult classic with Jeffry Combs playing a mad scientist who creates a serum that can re-animate the dead. I’m not much into psycho-sexual science fiction horror or whatever genre Lovecraft falls into, as it’s not my jam, so I’m not sure if this scene is in the book, but Combs is trying to convince the naive lab partner that the serum is real. Dan Cain, played by Bruce Abbott of the Evil Dead franchise, stares in disbelief at the dead cat lying on the table after witnessing Combs’s secret serum at work, saying, “The cat must have been stunned, not actually dead.” Combs picks up the stiffened creature, dropping it back onto the table and says, “Do you agree that right now, this cat is dead?” Dan sheepishly nods in agreement and then Combs proceeds to inject a part of the animal with the serum, momentarily reanimating it.
Sooooooo, at what point are we going to admit that the cat wasn’t stunned and accept reality and admit there’s a problem and learned helpless as the most common go-to ‘solution’ in our community is not working? Never did, and, most importantly, never will. Dead is dead. This is pretty black and white. Since autism is a pragmatic language disorder and we understand language best that is clear, direct and without the frills like those silly little paper hats put on a rack of lamb right before serving, how much more direct or blunt does it need to be before those connections are made and the pain is great enough to motivate change from the person who needs to make it? That would be you by the way.
If we’re waiting for the allistic society to do all the changing, we’re going to be waiting forever. Godot will end up showing before that happens. If we want change, we’re going to have to put in some serious effort. Allistic perceptions will begin to change when they start to see autism through a different lens and in order to do that, we have to first start with ourselves and how we interact in the world exactly as it is without any expectations for accommodation and not as we wish it were. We have to stop putting the cart before the horse (the cart being accommodation and the horse is us making an effort to push through challenging sensory and executive function issues). Human nature is such that people, not neurotypes, fear that which they do not understand, so in order to create a new standard of behavior, they have first be shown that different is ‘safe’. Until we start to all move more towards the center point of understanding, we all continue to limit ourselves to our individual small tribes. To our detriment.
I’m out here working as hard as I can to advocate, to advance the narrative not just for me but for all of us because I believe neuro-inclusivity is possible, but we’ve got some work to do as a community first and I need some help here. I need to turn those ‘can’ts’ into ‘cans’; ‘won’ts’ into ‘wills’. I’m by no means saying that our community goal should aspire to becoming neurotypical because we will never be, nor would I want that. I don’t want to be neurotypical, I just want to be me. But I am saying that our goal has to be bigger than only putting our toe in the water when it comes to trying to push through the really tough stuff. It’s boot camp time baby and this coach wears combat boots. They might be Jimmy Choo combat boots because no one said that you can’t still be stylish, but combat boots and clear expectations are what’s needed now.
My goal isn’t to have us stone to death our vital essence under the weight of a false mask we’re forced to wear; just the opposite. My goal is for us to be comfortable with who we are, exactly as we are but we do need to learn how to build distress tolerances to our sensitivities for ourselves first, for our own peace of mind and quality of life and then we can more confidently navigate through the sometimes stormy seas of norms that don’t make sense not just to autistics, but don’t make sense period and create change. But we can’t change any of that unless we’re out there showing the world how to get things done and that sometimes different has a lot to offer and might even be the better way. But we’ve got to stop hiding. We have to accept we have to learn certain things even when they’re hard and that by doing so, we’re trail blazing a better path with more inclusivity and acceptance for future generations.
Let me tell you about learning the hard way; for 55 years I felt like I was doing time in a Siberian prison camp. I’ve been eviscerated socially; humiliated, taunted, abused, marginalized, invalidated - just put the entire thesaurus for ‘shitty time’ right here. I spent years like a dog chasing its tail because I didn’t understand what the endgame was; it took years to get me to the place where I finally understood that I needed to learn the hidden curriculum that doesn’t come naturally to the neurodiverse. Once I understood what the rules and expectations were, it got easier for me to navigate my goals while retaining my authentic self. Yes Virginia, it can be done. A simple paradigm shift of learning to mask with intention versus masking just to fit in and a willingness to accept without judgment the need to learn new and sometimes scary things out of our comfort zone, does wonders. Truly, that one little shift is a mental salve. I’m not just hypothesizing this, I’ve been test driving it on myself and my kids as I built their support scaffolding from scratch. The results have been positive, so much so, that I started a business coaching high functioning adults to help them understand the social norms that are unsaid and untaught.
We hear a lot about how the world isn’t built for those of us who are wired differently. True, but with the right skills, the environment shouldn’t matter and the goal should be to reduce letting that be an obstacle such that it is our undoing. This is something we can learn to make work if we lean into our strengths and learn to manage our weaknesses. The issues will still be there, it’s just we’re calling the shots over them instead of the other way around. My daughter calls these self-limiting thoughts ‘breaking and entering’ and tells them they are unwelcome and to git before she calls the cops on them. This is an example of one of the techniques she was taught on how to regulate herself quickly when becoming distressed. She personalized it with the breaking and entering narrative.
Bootcamp starts at o dark 30. No sleeping in; we’ve got work to do.