It’s the end of autism awareness month and this video is pretty good.

Points I’ve been thinking about for the past two weeks:

1. Masking fatigue is real and even people who love you might never understand how you can mask in total panic or anxiety because you look like you’re fine or enjoying yourself. Your body language reads differently to a neurotypical person.
2. People attribute your affect and behavior to personality flaws that are just built in autistic features you cannot escape, but you mask them very well.
3. Non-autistic people can spot autistic people within seconds. They might not know we’re autistic, but they know something is weird and they’d prefer not to interact with it. There are behavioral studies to back this up.

The real question is: if our traits are categorized as a mental disorder, and our behaviors are off-putting enough to keep us from entering the workforce or staying in it in a consistent and meaningful way, why is there no disability assistance for the overwhelming majority of autistic adults who are chronically unemployed by virtue of their autism? I’m talking money but also social workers and non-profits to help us navigate systems.

We don’t get to define ourselves, even though we’re the experts on autism. And the people who have defined us did it in such a fundamentally confusing and ignorant way that we can’t avail ourselves of self-help or government assistance. Self-declaration as autistic in the workforce is still dangerous.

The work assistance that is out there for autistic adults is superficial and condescending. I got an email this month from an organization that claims to help autistic people get hired titled “How to take charge of your job search.” It offered tips like:

“Taking care of your well-being during the job search is also essential. We encourage you to schedule time for activities that rejuvenate you, such as exercising, painting, gardening, and anything that brings you joy. To put your best foot forward at every stage of the search, you need to feel your best too.”

This, to an autistic person, is the equivalent of telling bread-starved French peasants to eat cake instead.

Now that I’ve seen DEIA close up as a speaker and a participant in conferences, I can say with some authority that the advocates out there are so burdened trying to explain what autism is and isn’t that we lose the attention of HR people who just want implementable solution bullet lists. Instead of meaningful institutional change or dollars put towards alternative channels for employment (that aren’t tech based), autistic advocates get smothered in gratitude and declarations that “you’re so strong and we still have so much to learn.”

The stakes are these: autistic people are more likely to live in poverty, more likely to have chronic illness and complex PTSD, and we have shorter lifespans. Our house is on fire and we get offered affirmations by hiring institutions, disability advocacy organizations, and well-meaning allistics. There is a burgeoning industry of people profiting from “autism awareness” who have no intention of fundamentally changing our outcomes. Autism Speaks is the worst, but only the first among many.

There are real solutions. But they are systemic and detailed and not based in patching holes in existing infrastructure but envisioning a new paradigm that includes us fundamentally instead of tangentially or superficially.