#Autism
When I first came face to face with the possibility of being autistic, I was desperate to believe it could be fixed – training therapy, coaching etc
A few weeks/months of dedicated processes and I’d be fine
But as I got serious and unpacked coping strategies, as the demands of my life, of adulthood grew, I had to come face to face with the fact that autism was the “it” that made me other and unique and loveable and irritating and special and brilliant and exhausted all at once
I remember breaking down one night and weeping my eyes out because the realization dawned that support, and therapy and coaching would be great, and would help me live a better life; but it would be a life-long thing, as opposed to a one-time fix
I saw and spoke with much older autistic adults who had what society would regard as a fairly successful life, and they all had one thing in common – incredible support systems (staff and automation).* Of course, this brings to the fore the reason wealth privilege is a thing in ND communities – the support that helps us function like NTs is expensive, but without it, we are not likely to do well enough to earn in the range that can help us to grow/be promoted to earn what we need to earn. It’s such a painful, vicious cycle.
It hurt, but it gave me a new goal – to break that barrier into the sort of wealth that lets me afford the support I need, and then build profitable businesses that give other ND people the work environment they need to break that barrier for themselves and then go on to build something similar… To set up the exponential proliferation of ND-friendly spaces
*It felt like I had lost the lottery – gained incredible skills that put me ahead of the curve (things I could do, decipher and leverage without the need to rely heavily on complex tech), but I had missed out on the skills that were considered simple and mundane by the majority of aociety. I felt like a gifted failure, and all the years of being praised for brilliance and “incredible potential” came boiling down in an overwhelming wave of shame and frustration and relief at “finally” having an explanation for falling short, but also handicapped
Sometimes, because we can pass as abled, we’re doubly endangered. Being able to pass as abled often cuts us off from accessing the help we so desperately need because it hides the immense effort and sometimes pain it took to be able to achieve that bare minimum. But because society judges people’s need based on how much they “look like they need it”… Accessibility tools and support becomes a dicey affair.
I want to apply myself, and do my best. But I also want to be able to access available support so I can do so much more (maybe even match up with my colleagues), with less stress and discomfort and pain
But the reality is exhausting
Some days, it means sounding as cheerful as you can on virtual meetings and calls, seeing how you can push for 30 minutes so no one asks questions, while you keep your lights and video off to hide the tears running down your face as sheer exhaustion wrecks your body
It’s in the itchy eyes and blinding headache because the white lights are too harsh, and shining directly in your face – but the lights have to be kept on because “you’re not the only one here”
It’s in walking into a loud room or building – the noise is not particularly from the humans, but the tap of keyboards, click of heels, whirling of the fans, hum of the A/C, buzz of the wires, scratch of the PA system even though no one is speaking, sound of the wind draft from the window not quite properly closed. Worse, you can hear all the sounds, but cannot pin point where what sound is coming from, so it’s all a cacophony echoing in your head and human voices are a distant sound. So you plug your ears to drown out the worst of it and allow your eyes to go out of focus make your way through the room/building by memory
(it’s like when your device battery is low, so you shut down some apps and background activities to try and conserve energy. If you’ve ever wondered why I don’t always wear my glasses, this is part of it)
It’s the ways it leaves you vulnerable in public, on the streets, when interacting with others
…makes you crave silence and solitude, makes you question the why’s
It’s the ways you have little bandwidth left for anything else
It’s also acceptance. This is the way the world is. It’s loud and irritable and stressful. Until you journey to the point where you can afford to not be bothered by the worst of it, you grit your teeth, suck in your breath, wear your mask, and pretend to be fine
It’s in the paradox of “potentials”, as humans fixate on the things that took all of your grit, body and soul to achieve as the places you can thrive, while ignoring the things that you can actually do in your sleep. The “majoring on the minor”. How the things that comes easily for neurotypicals only come up to baseline when you devote days and years of meticulous study and practice. How the standards seem eternally skewed, and nothing makes sense
It’s in how you periodically burnout because you are expending so much of yourself to try and meet the expected “bare minimum”, but it isn’t actually enough and your label/consistent feedback is how “you need to try” and “do better” and “stop wasting your potential”
(for context, I first wrote this in August of 2021. This is August, 2024 and not much as changed) 🙃