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From Awareness to Acceptance: A Call to Our Communities and Ourselves

By Eliot Carter, DNWML Community Programs Manager

The disability community seems to love awareness months. And for good reason – we are an incredibly diverse community. While we unite under the large banner of disability, the experiences we have in our bodies couldn’t be more different from one another. Awareness months are a chance for people with a particular disability to come forward to share their stories and allow the rest of the world to appreciate the wide variety of experiences within that community. At their best, awareness events are like the many threads woven together to create a panel of an intricate tapestry. The colors and textures of each thread can be beautiful in themselves, but that beauty becomes even more impressive as we zoom out to see we are all a part of a larger work of art. At their worst, awareness events serve to flatten, not enrich, the disability experience. This often happens when the narratives shared come from the medical establishment, policy leaders or nonprofits in an attempt to evoke pity for the disabled. Time and time again, the disability community has been used to leverage emotions like pity for the goal of fundraising, with very little of that money being used to improve disabled lives. 

Autism Awareness Month has been around since 1970, but it became widely celebrated in the early 2000s with the help of the marketing done by the organization Autism Speaks. Autism Speaks was formed in 2005 by Bob Wright, an executive at General Electric, after he learned his grandson had been diagnosed with autism. The promise of curing autism was central to the organization’s founding and its advertising campaigns. On one hand, I empathize with the families who are dealing with the frustrations that come from getting proper support for a child with autism. I understand how alluring a cure for autism sounds to them, but these misdirected frustrations of dealing with an ableist society has been used as fuel for Autism Speaks’ marketing campaigns. Almost 20 years and billions of donated dollars later, we are no closer to a “cure” for autism than we were at the organization’s founding. Consequently, the public who came to understand autism through the narratives pushed by Autism Speaks could scarcely imagine a solution to these families’ struggles other than curing and eliminating the condition entirely. 

By the 2010s, blogs and social media sites had become commonplace for sharing information and connecting to people all across the globe. It became much easier to find written accounts of autistic life that were not edited from the perspective of a non-accepting parent or a nonprofit trying to maximize donations. Digital organizing was key in mobilizing a growing Autistic Self-Advocacy movement. In 2011, writer and self-advocate Paula Durbin-Westly launched what is believed to be the first Autism Acceptance Month on social media. She was tired of spending the month of April debunking harmful messages about autism, myths such as “autistic people feel no emotions” and scaremongering narratives from parents that suggested that autism “stole their child away from them.” Durbin-Westly wanted autistic self-advocates to preempt these discussions by sharing their lived experiences and what they love about being autistic. Maybe it’s their ability to memorize facts about and derive joy from their special interests. Maybe autism is instrumental in helping them stick to their values. Maybe autism can make life more complicated for some, but they are able to live a life they can be proud of with the right supports. All of these can be expressions of Autism Acceptance. 

To my knowledge, no other disability has made the transformation from having an awareness month to an acceptance month. That makes sense, and this shouldn’t be an end-all-be-all goal for every community. Awareness much precede acceptance, because how can you accept something you don’t know about? However, I see Autism Acceptance Month as a necessary project because awareness of autism was not being spread in the month of April so much as fear of it was. Fear does not spark curiosity. In fact, it encourages people to look away. That includes looking away from oneself, both among the diagnosed and the not-yet-identified autistic people. 

Like many people, I didn’t want to entertain the thought that I might be autistic because of the stigma associated with it. Then one day, the person I had my first long-term relationship with came out to me as autistic. That transformed my perception of autism as something to be feared into something that I was curious about. It didn’t take long to figure out that was because they reminded me of who I was before I started heavily policing my own behaviors to fit in. It had been years since I had talked publicly about Pokémon (my special interest), or the fantastical stories I daydreamed when I needed to escape. I treated my exhaustion after socializing as something to overcome, and pushed myself past my limits if I thought it meant people would like me more. That was 10 years ago, and it would be another several years before I realized how much internalized ableism I was still dealing with. I allowed myself to enjoy Pokémon again, but I still chastised myself for having such immature interests. I knew I had a lower threshold for social activity than the people I compared myself to, but that didn’t stop me from thinking that made me inferior to them. And I definitely did not talk about my autism with more than just a few close friends. In a sense, I had autistic self-awareness without autistic self-acceptance. 

It’s hard to accept parts of yourself that seem to be at odds with how society tells us what is necessary to be successful in life. It was a unique challenge for me as someone who did not get professionally recognized as autistic until my adulthood. I did well in public school, and I had at least a couple friends, so I didn’t seem to be struggling with the demands of being a school-aged child. In actuality, I dreaded talking to most of my peers because I had been bullied or iced out by people who I had tried to be friends with. I started responding to overwhelming stimuli like bright lights and crowded spaces by disconnecting with my body and emotions and simply “going through the motions.” My stress built up faster when I left K-12 school, and I had to see multiple specialists for worsening mental health, chronic pain, and digestion problems. Learning that I was autistic helped explain that “being from another planet” feeling that I had when trying to understand the unwritten rules of socializing, but my loneliness remained. When the Autism Acceptance Movement gained speed, tech companies like Microsoft started touting the “superpowers” of autism – such as attention to detail, a willingness to challenge conventions, and independence – as makers of great employees. While these attitudes may encourage employers to hire people with autism, they still make sweeping assumptions about what autistic people want to do and are capable of. Whether it’s under the banner of awareness or acceptance, powerful entities are still prone to focus on how autistic people are of benefit or detriment to them, while never stopping to consider that we are a widely diverse group with inner worlds that are as complex as any neurotypical person. 

Autism is value-neutral – it is not a disease to be cured or a superpower, but a way to describe how a person thinks and processes sensory information, which has both challenges and strengths. Autism Acceptance Month is the fulfillment of the promise of “nothing about us without us” because it allowed autistic people the agency to tell their stories how they wanted to. And that storytelling has impacted millions of people. I’ve met autistic people who were diagnosed in their 40s or beyond, meaning clinicians are more able to recognize how autism looks like in adults than they were 10 years ago. I have no doubt that is attributable to Autism Acceptance Month and related pro-neurodiversity online conversations like #ActuallyAutistic and #AuDHD (about the intersection of autism and ADHD).  

To close out this blog post and the month of April, I want to share some concluding thoughts about what I would like non-autistic people to know about autism and what I would like autistic people to know about themselves. 

• If you’ve met one person with autism… you’ve met one person with autism. There are so many dimensions of the autism spectrum – sensory sensitivity, literal thinking, cognitive challenges, speech difficulty, monotropism (the tendency to focus intensely on a small number of things), and more. Every person on the spectrum will struggle with these at different levels, and one does not make you “more autistic” than another. 
• Autism is associated with many other disabilities and conditions, such as epilepsy, anxiety, depression, sleep disorders, ADHD, eating disorders, and conditions causing chronic pain like Ehlers-Danlos Syndrome. It’s impossible to say if autism causes any of these companion conditions, but they all seem to occur at greater rates among the autistic community. 
• Language is evolving and ultimately a personal preference. I used “person with autism” (person first language) and “autistic person” (identity first language) interchangeably throughout this post because different people will refer to themselves in different ways. Some people like “person with autism” more because by putting “person” first, the attention is put on the personhood before the diagnosis. Others prefer “autistic person” because they reject the idea that they can separate themselves from their autism and that there can be a cure that would hypothetically make them a person without autism. Another reason people may like “autistic person” is because it mirrors the way people from other oppressed identities talk about themselves (e.g., a gay person vs. a “person with gayness”). It does not matter so much which one you use unless someone with autism expresses they would like to be referred to in a specific way. 
• Speaking of language, all autistic people have needs and feelings that they need to communicate. Just because someone isn’t using verbal language doesn’t mean they have nothing to say. All autistic people should be given the chance to use whatever communication method works best for them, whether it’s a picture board, a speech synthesizer, sign language, writing, or something else entirely. 
• People who received autism diagnoses later in life may have tried to hide or compensate for their struggles by “masking” their autistic traits under a persona that appears more neurotypical. This is an exhausting process and learning that you don’t have to contort your personality to be respected is liberating. If you are autistic, prioritize your friends that make you feel safe enough to drop your mask whenever possible. If you aren’t autistic, be that accepting person – someone does not need to make consistent eye contact, sit perfectly still, dress according to their assigned gender, use spoken English, or share your interests to be respected as a valuable human being. 
• Finally, our meltdowns and outbursts are the result of being pushed past our limits, so they can be painful and embarrassing for us too. They can be caused by sensations that non-autistic people can’t always recognize, like bright lights, being touched, or unpleasant textures or smells. Seek to change the environments we are in before attempting to change us.