By Laura Sharkey

When I was asked to write a bit about Autism Awareness Month, I readily agreed. I thought it would be easy, and it’s a subject that is close to my heart and soul, and critical to my well-being.

I was wrong. It’s not been easy at all. It’s been painfully overwhelming. I seriously underestimated the amount of emotional flotsam and jetsam I have cluttering up my brain on this subject.

I have been a social justice activist most of my life. With the slightest prompting, I will pontificate profusely about a variety of social justice topics. Most of the time, I can set aside my emotional load and communicate articulately what I feel compelled to share. On those occasions when I can’t, my mind is packed full of razor-sharp declarations of searing truth but I can’t manage to transform a single one into words. And then I realize I’m drowning in shame, either frantically trying to escape it, or incapacitated by numbing resignation.

My therapist told me today that whenever shame comes up about a marginalized part of my identity, it is very likely that the source of that shame is internalized oppression. And I am finding that I have enough shame to fill a dozen dumpsters, related to all of my marginalized identities, but most intensely around being autistic.

It’s easy to believe, as a seasoned activist, that knowing about oppression and resistance should be enough to dispel internalized shame. It’s not, for me. I get tangled and mired in the complicated messiness of how my intersectional being pinballs erratically off of privilege and oppression – responsible and culpable one moment, righteously resistant the next – but then realizing that actually, it’s both things all the time, and how the hell do I make sense of it?

How do I, who have been beaten down my whole life and taught to hate myself, navigate resisting that violent socialization? Especially while also attending to my responsibility to unlearn the ways I’ve also been taught to perpetuate that socialization in all its various flavors, against other people over whom I have privileged, system-backed power?

Sometimes the confusion and angst about all that renders me mute. I step back, let the public at large decide what and when social causes deserve attention, and I refrain from saying what I really believe. If I were to speak, I would stress that we can’t afford to silo our framing of “isms” the way we do. We have to attend to all of it. Regardless of our specific topic of focus, it is imperative that we see the intersections, the intertwining, the chicken-and-egg aspects, and frame our resistance so as not to justify perpetuating or ignoring one kind of oppression in service of ending another. We, as a culture, aren’t very good at attending to complexity, but we have to try.

It’s harder than hell for me to say that. Because honestly, I don’t really believe my pain matters as much as anyone else’s. I have to try too. Because otherwise, I marinate in toxic resentment.

So I say it to myself again: I have to try, too. I know the general public doesn’t care about the disabled, especially the Mad and neurodivergent, anywhere near as much as it cares about the targets of more well known forms of oppression. But fuck the shame. It’s April, and I don’t want to spend the whole month stewing in frustrated resentment because I’m not speaking up, not resisting the oppressively spun stories about who I am and what my life is like, that saturate TV and the internet throughout the month.

I’ve tried so many times to start writing about Autism Awareness Month – no big deal, just a straightforward, concise list of the things about it that #ActuallyAutistic people (especially those of us who are social justice activists) detest, with suggestions for what messages to absorb instead. Easy, right? But I’m ashamed and scared, because I’ve been told my entire life that how I am – how I show up in interaction with other people – is deficient, burdensome, just not quite right. I’m scared that I’ll say it wrong – be too bombastic, ardent or frantic, or too placating, euphemistic, “positive” – and I’ll either fail to speak clearly or I’ll alienate my entire audience. Yup, internalized anti-autistic bias is hard at work in my beleaguered brain. The antidote is to speak anyway. So I’ll try.

Allistic (non-autistic) people: please know that if you find this confusing or overwhelming, you are not alone. There is a lot of conflicting information, attitudes, beliefs out there. What I present here is based on my lived experience, being a late-diagnosed autistic adult. I do not “have autism.” I am not a person “with autism.” I am autistic. Autism is an integral part of who I am. It is not something horrible that has happened to me. There’s no question: Autism is a disability, and being autistic presents many difficulties and dangers that allistics don’t contend with. That being said, most of the hardship I suffer is caused by anti-autistic ableism rather than because of my autistic traits. That is not necessarily true for all autistic people. It is true for me, and for many others.

We are not a monolith, and there is no universal description that can include all of us. The one thing I’m confident is true for all autistics, is that the major powers – non-profit organizations, governmental bodies, healthcare and educational systems, the entertainment industry – routinely define us and make decisions deemed to be in our best interest without knowing or consulting us. We are not included in the plans, policies, informational framing, or priorities that are supposedly made on our behalf. Whether we, individually, agree or disagree with how “autism” is managed and presented by these entities, there is no doubt that the decisions are made without our input or agreement.

So while I must stress that I do not speak for all autistics, I am confident I speak for the majority of us because I’m an #ActuallyAutistic social justice activist. I know “us” as a group, and most of us wish to have the rights, respect and resources we need to be be perceived and supported by dominant culture as human beings, worthy of dignity and equity.

Because autistic liberation is not a topic that has, as yet, become at all familiar to the general public, it can be very confusing, and even overwhelming. This is by no means an exhaustive or all-inclusive list, but I hope to give allistic people a bit of guidance and support for learning how to discern the marginalizing or liberating potential of entities, words, symbols, and concepts of autistic activism. I feel the best way to do that is to list the most significant aspects of the Autism Awareness Month campaign, and indicate what to focus on and what to avoid:

AVOID…
the term “Autism Awareness,” especially as related to the April media campaign.

FOCUS INSTEAD ON…
the term “Autism Acceptance,” or explanations as to why the “Autism Awareness” month campaign is harmful to so many #ActuallyAutistic people.

AVOID…
content that appears to be created primarily by allistic people, even if they are parents/caregivers, medical professionals, etc. If the content creation does not actively include #ActuallyAutistic people, it may be about us, but it’s probably not for us.

FOCUS INSTEAD ON…
content that appears to be created primarily by #ActuallyAutistic people (even if they don’t actually include the #ActuallyAutistic hashtag). There’s a disability rights slogan that makes the point: “Nothing about us without us!”

AVOID…
depictions of autism as a tragic or terrifying external entity or threat, and autistics as victims of autism.

FOCUS INSTEAD ON…
depictions of autistics as a highly diverse group, victimized by anti-autistic ableism, that center encouragement and celebration of advocacy, support, intersectionality, inclusion, equity and respect.

AVOID…
framing that centers parent/caregiver needs and feelings by presenting the autistic child as a problem, a burden, an obstacle to “normal” life, or an uncontrollable monster.

FOCUS INSTEAD ON…
framing that centers the support needs of the autistic person, and offers resources and/or guidance that will support parents/caregivers in caring for an autistic dependent in a way that is respectful of everyone’s dignity, privacy, and well-being.

AVOID…
framing that presents autism as a pathological disorder, focusing on cause, cure and/or rehabilitative (invasive and harmful) “therapies” (ABA; shock treatment, etc); assumes overcoming or becoming “normal” should be the ultimate goal.

FOCUS INSTEAD ON...
framing that presents autism as a neurological variation, in place pre-birth, which has no known cause; looking for a cure is a drain on resources that could otherwise be used to improve autistic lives; assumes anti-autistic bias is ableist oppression; assumes the ultimate goal is to educate the general public, encourage increased acceptance of neurodiversity, and prioritize support and assistance per each individual’s needs, as reasonable and necessary.

AVOID…
platforms/sites that allow invasion of autistics’ privacy, for the purpose of spite, humor, or requests for advice (e.g., posting a video of a child’s meltdown online).

FOCUS INSTEAD ON…
platforms that enforce respect of all people’s right to privacy by prohibiting posting of imagery or information that disrespects another’s privacy, regardless of the target’s age or neurostate.

AVOID…
platforms/sites that use puzzle piece or “light it up blue” imagery, themes or logos.

FOCUS INSTEAD ON…
platforms that use an infinity symbol, or proprietary imagery, themes or logos. Sometimes the infinity symbol is stylized. It is most often gold or rainbow (like the one at the top of this article).

AVOID…
platforms/sites that explicitly state or imply that all/most autistics are male children; focus primarily on the concerns and priorities of white autistics and their caregivers, who are assumed to have access to adequate healthcare.

FOCUS INSTEAD ON…
platforms/sites that explicitly include women and girls, BIPOC, LGBTQIA+, adults, all classes, those incarcerated in prisons or institutions, the disabled, Deaf/deaf/HOH people, etc.

AVOID…
Assumptions that the correct scope for any gender-based analysis of autistic traits, frequency, etc., is binary, cisheteronormative male/female categorization.

FOCUS INSTEAD ON…
Discussion or analysis of the intersection of autism and gender is LGBTQIA+ inclusive, and openly acknowledges that there is a definite correlation between being autistic, and being trans, non-binary, genderfluid, or agender.

AVOID…
sites/platforms that use functioning labels (“high functioning” vs. “low functioning”), IQ test scores, or a person’s willingness or ability to communicate verbally as definitive indicators of whether an individual should have access to assistive support, disability resources, etc.

FOCUS INSTEAD ON…
sites/platforms that recognize the complexity, variation, and dynamic nature of autistic traits, and use non-hierarchical and nuanced determinations of ability/disability to determine assistive needs and required support for each individual; assessments are collaborative and empower the autistic person to participate in the decision-making process to the extent that they are able.

AVOID…
insistence on person-first language (e.g., “person with autism,” “person who has autism”).

FOCUS INSTEAD ON…
default use of identity-first language (e.g., “autistic,” “autistic person”) and emphasizes that individual’s preference for how to refer to them takes precedence over either convention (e.g., I am autistic, and have an emphatic preference for identity-first; however, if another autistic person expresses a preference for person-first, I will respect that when referring to them).

A FEW HELPFUL RESOURCES:

I hope this list is a helpful reference for allistic people who hope to be allies to autistics.

There’s one autism-focused organization out there that you’ve probably heard of. It is not on this list. The two that are here are much better! If you would like to learn more on your own, both organizations are friendly and accessible to autistics and allistics alike:

Autistic Women & Nonbinary Network – it’s mission is “to provide community, support and resources for Autistic women, girls, transfeminine and transmasculine nonbinary and genderqueer people, trans people of all genders, Two Spirit people, and all others of marginalized genders.”

Autistic Self Advocacy Network – “ASAN was created to serve as a national grassroots disability rights organization for the autistic community, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to advance civil rights, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.”

There are so many autistic writers and activists out there. It was hard to pick just a few. The two on this very short list are my favorites (in no particular order) because they are long-time autistic activists with both extensive experience and importantly unique perspectives on autistic equity:

Lydia X. Z. Brown (Autistic Hoya) – Brown is a BIPOC, genderqueer, disabled activist, writer and lawyer. There is a LOT of good stuff on their site, including a very handy reference list of ableist language, with suggested alternatives.

Max Sparrow (Unstrange Mind) – Sparrow is a transmasculine writer/activist/artist. They’ve written a few books, as well as editing an anthology of writings by trans autistics. So much good stuff here!

I kept the resource offerings short so an not to overwhelm with too many choices. If, however, you would like more, or have questions, please email me at accessibility@offthematintotheworld.org.