Entering my first Autism Bewareness Month knowing I am autistic is unlocking uneasy, nervous, and traumatic feelings. And I’m certainly not alone — the autistic community at large is bracing for another year of ableism, infantilization, pathologizing, and invalidation.
Something is deeply broken when autistic people dread the very month meant to serve us.
80% of autistic people are unemployed, and, being in the extremely privileged position I am as an autistic person, I’m sharing what I want my network to know about autism, why we need acceptance, not awareness, and why disability and neurodiversity advocacy needs to be part of every DE&I conversation.
I was diagnosed with Autism Spectrum Disorder (ASD) last year shortly after my 30th birthday. Before I was 18, I had been diagnosed with anxiety, depression, OCD — everything BUT autism. After a long journey and in the bliss of being told to stay home and not socialize, I realized I was autistic at age 30. My story isn’t unique. A mix of bias in medicine, a lack of research, and women being socialized to mask (the term for autistic people hiding their traits for survival or protection) means there are countless stories like mine from women and LGBTQ people.
Shy girl who had trouble speaking becomes a woman who excels at public speaking after decades of acting a part. Girl who didn’t like being touched and cried every 4th of July becomes a woman with severe sensory issues. Girl who was an exceptionally good student is privileged enough to make a career out of special interests. Girl who only got in trouble at school for fighting with homophobes still gets in trouble for being too blunt about social justice issues because her brain only processes in good/bad. Socially awkward girl remains socially weird woman who has to guess when you want her to smile at a story or when it’s her turn to speak.
Being diagnosed was one of the best things that’s happened to me. I have a name for everything I’ve struggled with and everything I’m really good at. Knowing I am autistic helped me heal from trauma, the years of shame for struggling at things I couldn’t explain and overexerting myself to the point where I spent many weekends nonverbal in bed. I’ve created a better life for myself knowing I have many strengths but I also have limits as a disabled person. I’m proud of being autistic and am in a very good season of my life post-diagnosis.
The dialogue around Autism Awareness Month (or Bewareness Month as the #ActuallyAutistic community calls it) is one that reflects the trauma of being autistic in a world that isn’t designed for us and often pities us. Autism Awareness is peddled by hate groups like Autism Speaks, ensuring that they make it clear that autism is the very worst thing that could happen to your child while providing very little support for autistic children. Autism is a disability but people on the spectrum are much more than our deficits. We demand acceptance — not awareness.
What are ways you can be an ally to the autistic community starting with Autism Acceptance Month and beyond?
Get comfortable acknowledging that you probably don’t know very much about autism and you probably know even less about autism in women and LGBTQ folks. The cultural narrative, much of the research, and the representation in media are overwhelmingly ableist and from a neurotypical (non-autistic) perspective. Imagine hearing about the lived experience of women entirely from men. That’s what it feels like to be autistic and see your identity play out from a completely incorrect outlook in culture, especially as an autistic woman when we have virtually no representation at all. We aren’t the cold savants who can’t feel emotions and are really good at math (as anyone who’s ever worked with me will tell you, I’m, like, terrible at numbers). Our experiences are rich and nuanced and deserve to be told by us.
Since coming out as autistic, I’ve heard a range of microaggressions: “You’re too smart to be autistic!” “You don’t look autistic!” “Don’t worry, no one would be able to tell.” I‘ve learned to not take offense and am taking on the work of advocacy and education to my neurotypical community on why these comments are so (unintentionally) misguided. Autistic people aren’t stupid, autism doesn’t have a “look”, and creating shame around a disability is the very definition of ableism.
This commonplace and casual ableism is why you should listen to autistic people — not the well-meaning parents, the media, the guy who has a cousin who’s autistic. Follow autistic creators, read our stories, listen to us. When I share disability advocacy information, the outpouring of “I didn’t know!” messages I receive from people who are otherwise progressive and invested in social justice movements still astonishes me — but I would probably have counted myself amongst them a mere year ago. The #ActuallyAutistic community is filled with autistic educators, activists, and creators who you should absolutely follow, especially those who intersect with other identities and have lived experiences of marginalization I will never face as a white, straight passing, verbal AFAB woman.
Second, language matters. Despite the very well-intentioned advice you’ve been told, the overwhelming majority of the autistic community does not like person-first language (“she has autism”) and prefer you refer to us with identity-first language (“she is autistic”). I use identity-first language. While there are some of us who prefer person-first language, most of us do not want you to use that terminology.
Person-first language insinuates that you cannot see us as a person unless you remove our disability from our personhood. Moreover, identity-first language is a true reflection of my lived experienced with a disability. Being autistic shapes every aspect of my personhood and I cannot separate my identity from it. I don’t carry it “with” me and get to put it down like a handbag when it’s uncomfy for you.
As you wouldn’t say “She has gayness.” — you would simply say “She is gay.” It’s okay to ask autistic people which they prefer, just like you can ask for someone’s pronouns. However, do not insert your perspective on how they should identify once they tell you. I personally don’t know any autistic person who likes person-first language but I would absolutely refer to them as they wish when speaking to them as they certainly do exist.
Next, functioning labels are toxic. Autism isn’t a linear spectrum of more autistic or less autistic — it’s a color wheel spectrum where every autistic person differs, especially based on their environment. To say someone is “high functioning” translates to our autism doesn’t burden you and invalidates the unseen struggles we try to hide from you for our safety and acceptance. To say someone is “low functioning” is derogatory and ableist — as if they are unable to contribute value because they require more support. There is still debate on the appropriate replacements, but most of us agree that support-needs labels (high support-needs vs low support-needs) are preferred.
My final thoughts on language: autistic and disabled are neutral words. Using euphemisms to describe autistic people like “special needs” or “differently abled” invalidates our struggles to ensure you only see our strengths but aren’t burdened with our deficits. Our struggles and strengths coexist. If you have a negative reaction to these words, I encourage you to look inwards to unlearn the ableism you’ve been taught.
Next, autistic people think and work differently because we experience the world differently — which means we’ll usually need accommodations to do our best work. If I could succinctly tell you what it’s like being autistic, it’s like you spend your whole life playing a game where you’ll never know the rules that everyone else knows. It’s like everyone is trashed and you’re dead sober. My emotions are crushingly deep but my ability to articulate them is either too much or too little for most neurotypical people. Mildly loud noises feel like a knife in my head. Too many voices at once feels like 5 knives. Eye contact can be hard. I really like speaking with people individually but can become non-verbal in large groups. I struggle with auditory processing and usually need unstimulated time to think before making most decisions.
Because our brains are wired as divergent, you’ll see that we are among the most creative people you’ll meet if you just give us the opportunity.
Because we experience the world differently, socializing can be hard for us. It’s not a coincidence that I’ve done the best work of my career while being socially isolated in a quiet apartment. The ad and media industries are predicated on people skills, socializing, being liked, and navigating complex social hierarchies that autistic people don’t understand. I hope the conversations around DE&I continue to evolve in this regard. After 30 years, I’m beginning to trust myself enough to stop masking in situations where I am safe and accepted. I consider myself lucky to work with a team that has created such an environment.
Finally, we hate the puzzle piece. Stop using it. There’s ample research that shows it increases bigotry from neurotypical people who view us as subhuman because it infers we are missing a piece of our humanity while simultaneously increasing feelings of self-hatred for autistic people who feel incomplete with such imagery. Use the infinity rainbow symbol instead. And if you want to support autistic advocacy, the Autism Self Advocacy Network is a fantastic group to support.
I hope sharing my story and experience can help you navigate conversations around disability and neurodiversity with a more inclusive, accepting headspace. By embracing autistic people as valuable and worthy, our neurotypical friends and colleagues can help make Autism Acceptance Month less difficult for the autistic community.
This article was originally published by Rachel Lowenstein on Medium and is shared here with her permission.
Rachel (she/her) is a creative leader and social advocate. A respected industry thought leader, Rachel’s insights have been featured in publications such as Adweek and the New York Times. Rachel has been named one of Business Insider’s 35 Under 35 Rising Stars of Madison Avenue and The Drum’s “50 Under 30” for her creativity in media. She is an autistic queer woman who cares deeply about creating more equity for people using technology, media, and creativity. Drag queens, dogs, fantasy books, and fan fiction make her heart sing and she lives by the Dolly Parton quote "find out who you are and do it on purpose".
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