Autism and Allyship: What Does That Look Like To You?

Ask Autistics themselves if you’re not sure!

Dall E 3 Image Created by Prompt from Author

Recently, I was honored to be asked to give feedback to an autism organization for extensive training they are partaking in to help allistics (or neurotypicals) better understand autistic people on a particular niche subject. It involves reviewing several PowerPoint presentations with at least sixty or more slides, some with a lot more than that — and a few with less. I am happy to do it because the subject matter dramatically interests me, and I have skin in the game when it comes to that subject.

So what’s the problem? I think I should be paid for my time.

Don’t get me wrong; I believe in volunteerism when one is privileged enough to have the time to participate in it. I have served on the Boards of Directors and Advisory Boards of several nonprofit organizations over the years. I am involved in work now where parents are navigating a minefield that their autistic offspring are having to wade through, and I am always happy to help in those situations without even a thought of being compensated. In fact, because I have PDA (a term I don’t especially love) tendencies, the thought of being paid adds pressure to the job performance outcome the employer is seeking. So, sometimes, I actually prefer volunteerism — it involves far less pressure.

However, organizations that can afford to pay me when I offer my time and energy should. Depending on the sources that you read and trust, 50-85% of autistic people are unemployed or underemployed. The general consensus is that around 80–85% of us are not employed full-time. Every day, on my Google News alerts that flow into my email box, I get articles about how the workplace does all it can to “benefit from the talents” that neurodiverse individuals bestow upon the human race. Romanticized notions of autism abound, with everyone being fluid in STEM subjects, and Silicon Valley stereotypes are also prominent, such as the ubiquitous Elon Musk, who unfortunately seems to be autism’s living patron saint right now. The cognitive dissonance here is just stunning. While neurotypical organizations gloat about how much they are doing to help, those autistics who are doing their best to get by and don’t have actual superpowers get taken advantage of regularly by the same ones doing the gloating.

I’m going to say it plainly: If you ask an autistic person to do work for you, even if it aligns…no, especially if it aligns with their “special interest,” for Goodness Sake, pay them for it! Don’t assume that just because they are dealing with an issue they are passionate about means they don’t need to eat or have bills that need to be paid.

Others express similar sentiments. From annsautism blog, she writes…

I’ve been discussing pay, amongst autistic advocates, speakers and professionals. It seems that a lot of autistic speakers at conferences are being paid almost nothing, or nothing.

I am speaking from my own position of ‘privilege’, as an autistic business professional who is paid a substantial sum in outside industry. I also work within autism, as a national speaker and consultant, from time to time. For various groups. Many of those are wonderful, and who treat me and others very well. So this is not a complaint by me about my own treatment. Here, I’m using my voice to signal a huge area of general injustice. I want autistic expertise to be treated with more respect. I know so many fantastic autistic speakers and other professionals who are truly given the message that they are worth nothing. It has to stop…Absolute nonsense. If you can’t afford to pay people, put the price up to a level where you can afford to pay them. Jolly well make sure people respect and appreciate the expertise of the autistic professionals in that room.

Allyship and Autism

I have thought about this issue a lot lately. Unexplainably, the neurotypicals throughout my life who claim to understand special needs the most act as if they understand it the least. How else can I explain why I got better grades in my mainstream education classes in high school than in my special education classes — my special education classes lowered my Grade Point Average (GPA)? How else can I explain going to a conference as a speaker where the people who invited me know about my autism, pressure me to attend Gala events and receptions associated with the conference, and guilt-trip me for not going, even as they are not paying me to speak? How else can I explain some work experiences where my bosses were supposedly quite sensitive to my autism (on paper), but when I asked excessive questions to make sure I was doing things right, they told me I was distracting them from the work they themselves needed to get done? Why else would bosses call me on the phone when I have explained that this is jarring for me and I would much rather prefer a text? And on and on and on.

I could more easily excuse these kinds of incidents out of ignorance. If these were neurotypical people who didn’t work in the field of autism and didn’t put themselves out there to the community as autism experts, I would chalk it up to them not knowing about my neurotype. It would then be incumbent upon me — as hard as it is for me, to advocate for the accommodations I need. It’s harder to do so when the ones behaving this way should know better. You feel like you are preaching to the choir when you explain what you need to people who should already know, yet the choir is singing a different hymn than the one you expected them to be singing. Should I really have to explain that even though I am very passionate about something, I still have bills to pay?

I have alternative theories as to why the neurotypical expert choir sings a different tune from the autistics. Maybe they don’t want us to succumb to the soft bigotry of low expectations that the disability community themself complains about. Perhaps they truly feel like because we are so “smart and gifted,” we should be able to know everything about computers and technology — borrowing lazily from the stereotypes out there. Or is it that they think we “feel less” than others since the literature erroneously says so, despite that, in actuality, we feel more rejection, hurt, and pain (Yes, folks, we do experience profound empathy )? But when you boil it all down and apply Occam’s Razor, I think it comes to ableism. The insidious cancer of ableism — from people who are supposedly champions of autism.

So What’s the Solution?

Simple.

If you’re a neurotypical and you put yourself out there as an expert in autism or work for an autism organization, follow these principles:

1. Pay autistic people for their work, even if they don’t ask to be paid. Some won’t always do so, like me.
2. Provide us with clear instructions. Don’t assume we have the gift of telepathy. If we’ve never done something before, we probably won’t know how to do something.
3. Foster Inclusive Communication. This means accommodating every autistic’s unique needs for communication. If a person doesn’t like talking on the phone, respect that. If they want to keep their camera off during a Zoom meeting, respect that too.
4. Don’t patronize us. You may think we have “no theory of mind,” but believe me, autistics do have a unique, funky telepathic gift when it comes to knowing when they are being patronized. It diminishes our worth and self-esteem greatly.
5. Be open to our feedback. In a perfect world, I would have told the autism organization that I would only consult on their PowerPoints if I am paid for my time. But I care too much about this particular cause to do that, and I also don’t want to burn bridges. However, if I hypothetically offered this feedback to the autism organization, I would hope they would not be offended and offer to adjust their practices.
6. Recognize your own implicit bias when it comes to ableism. You may not think you have any, but that’s why it is called “implicit” — it’s naturally unconscious. Probe and examine your psyche to discover what hidden biases may lie underneath the surface.

In a world quick to romanticize autism but slow to cut the paycheck, it’s time to face the music: Autistic expertise isn’t a charity giveaway. When neurotypicals parade as autism experts yet skimp on paying autistic professionals, it’s not just irony — it’s ableism in a well-disguised cloak. Let’s tune up our practices: Pay autistic individuals not just in gratitude but in greenbacks. After all, passion for a cause doesn’t pay the bills, and genuine allyship starts with recognizing value in contribution and compensation.