“being autistic is a part of who I am, and it has shaped some of the parts of myself I love the most"
Image description: A collage of various trinkets and hobbies. The text reads “autism acceptance day” with a freedom oklahoma logo.
When I think about all of the layers of myself that I have found language for, and invited people in to see, sharing that I’m autistic always feels the most vulnerable. In part, because, like when I share that I’m nonbinary, it seems to invite questions about the validity of who I am (are you really autistic, you don’t seem autistic). It also opens me up to the fear that the rising tide of eugenics and ableism will lead folks to decide that as a disabled person, I cannot be trusted to lead an organization or do the work. And I continue to push past that invitation to harm and fear, because ultimately, like a disproportionate number of 2SLGBTQ+ folks, I am autistic (fun fact: research suggests autistic people are up to 3x more likely than allistics to be 2SLGBTQ+). And, like a disproportionate number of people marginalized by gender, I didn’t get my diagnosis until I was an adult. A process that was painful and expensive and an excellent place to remind you that self diagnosis is incredibly valid. I live at the intersection of so much expansiveness and so much harm, and that’s what I want to sit in this autism acceptance day (the Autistic Self Advocacy Network correction to centering today on “awareness”, and also is a great chance to lift up the organizing for the Autistic Self Advocacy Union).
here’s a few ways that shows up in my life and my work:
I’m an autistic person married to an autistic person. That means in choosing to get married, my spouse also had to choose that despite facing the arduous process (and common disabled experience) of being denied disability benefits despite having medical professionals who said that disability benefits were the most suitable path forward, my partner had to decide to never be eligible to access disability benefits in the future. Because marriage equality has never extended to disabled people in so many ways.
When my autistic “strong sense of justice” was directed at autism advocates (disproportionately parents of autistic children and some autistic adults who collaborate with them) because they were pushing policy that could make autistic people more vulnerable anywhere we need to show ID, from grabbing a drink at the bar to voting at the ballot box to interactions with the criminal punishment system, I was harassed and threatened. An experience I remain hesitant to discuss further, because of the ways I saw other autistic folks further harassed and taken to court, because people with more power and resources didn’t like concerns being raised. Particularly in a state where archaic libel laws are still being used to target people.
Even when I think about spaces that are supposed to be centered on joy in 2SLGBTQ+ community, the sensory overload of extreme heat and extreme noise means very rarely do I get to share in that sense of joyful community. Particularly as we continue to face a growing number of pandemics, and a refusal to mask and mitigate has become the norm, with the burden for the mitigation and the mitigation advocacy put on the folks who already have the least access and often least power in spaces.
“[Autism] has given me so many friendships and collaborations forged in our shared struggles.
And none of this is meant to be a woe-is-me tale of being autistic, or a point of shame for folks who are expanding their understanding by reading this, or who have failed to create accessible spaces until now. Because as a person for whom autism is just one facet of disability I live with, I know that there is always space to learn and grow and do better around access. And because being autistic is a part of who I am, and it has shaped some of the parts of myself I love the most. That strong commitment to justice, my fascination with learning about processes and sharing that knowledge (have you seen the tracking spreadsheet) makes me pretty damn good at the community work I get to do. And it has given me so many friendships and collaborations forged in our shared struggles. I’m so grateful to get to do the work I do with a board who has never once questioned if being autistic means that I should not be in a leadership role. I get to work alongside a team where I can be honest about my access needs (and our collective access needs), and we can collaborate around solutions when ableist business as usual is not a feasible option. And can debrief accessibility in every space we convene to make how we do better in creating more access an actionable part of the work.
There are still lots of days where it’s really hard. Because the autistic burnout is very real when working in systems that are not meant for you, more so when folks who are supposed to be allies and accomplices uphold those systems and expectations. In a timeline where we’ve seen an increasing amount of policy that aims to deny autistic folks access to making decisions about our gender and the care we receive, and in a cycle where we’re again facing a rise in eugenics, in fancy new names for disappearing disabled folks into institutions, and in which disabled folks are forced constantly to choose to risk our own health and wellbeing to access advocacy and policy spaces, it can be hard to imagine how we move beyond this present state where we don’t even have room to begin to grieve all of the compounding harms and losses. Because most autistic folks I know, particularly those of us diagnosed as adults and those folks for whom a system diagnosis is inaccessible, there are almost no resources or support. Of the few adult autism spaces that exist, many are intertwined with harmful organizations or folks who support harmful practices like applied behavior analysis (ABA) which shares its roots with so-called conversion therapy. And beyond that, many spaces maintain a respectability politic that is averse to expanding advocacy and inclusion for 2STGNC+ autistic folks.
Resources:
So, as today marks the second day of autism acceptance month and autism acceptance day, I hope you’ll do some of the internal work of thinking about where you can grow on access, where you can commit to learning about autism and access for autistic people from autistic people (and not the orgs and non-autistic folks who claim to do advocacy on our behalf). As I think about the fuller scope of disability learning and how I work to understand not only how I shift expectations and access for myself, but also for community, and do the advocacy work to expand that access, a few people/resources I find especially helpful include:
Everything from Leah Lakshmi Piepzna-Samarasinha
The vast work of Lisa J. Ellwood
The Resistance and Hope Anthology by The Disability Visibility Project
The work of Shain Neumeier including this meltdown BINGO resource
The Autistic People of Color Fund
Imani Barbarin (aka Crutches and Spice)
Kris Guin, founder of queerability
Reframing & Context
With the note that while all of these folks are people I have learned from, on occasion, especially in older interviews and archives, you may find outdated terms that autistic folks often purposefully don’t use any longer. And, while the evolution of language reflects an evolution of learning (and in the slower efforts to change diagnosis language), I want to offer the note I don’t use the outdated term Asperger, which refers to the Nazi Hans Asperger who conducted non-consensual experiments on autistic youth and participated in the mass murder of disabled people, or discuss autism on a scale of perceived ability to “pass” in normative, nonaccessible social spaces (often a hierarchical use of function). And I hope you’ll take the offering not to adopt this language or framework, even if you encounter it in older works.
Literature
And, in the instance you’re in search for some autistic representation, some of my favorite fiction reads with autistic main characters in the last few years include:
If Only You by Chloe Liese
Act Your Age, Eve Brown by Talia Hilbert
Always Only You by Chloe Liese
Late Bloomer by Mazey Eddings
Two Wrongs Make A Right by Chloe Liese
Compound Fracture by Andrew Joseph White
And, not a book, but the humor of autistic comedian Hannah Gadsby, is consistently guaranteed to make me laugh. (because yeah, autistic folks can in fact have really excellent senses of humor, just most of your allistic nonsense isn’t funny)
Solidarity Forever,
Nicole McAfee (they/she) - Executive Director