By Terra Vance
Every April, autism takes a center stage in global awareness. All around the world, well-meaning, good-hearted people “Light it up blue” for Autism Awareness Month, and they decorate their social media with the puzzle piece frames and the jigsaw rainbow awareness ribbons, go on awareness walks, fund-raise, and donate.
And, every March, autistic adults are already dreading April. Many report feeling traumatized by previous Aprils. They begin to mentally and emotionally prepare for what is ahead, feeling powerless to stop it. They’re bracing themselves for what is on the horizon.
Those well-meaning neurotypical (NT) allies really have no idea how autistic adults feel about Autism Awareness Month, and if they did, they’d spend the capital of their hearts and good intentions differently. This article explores why NT allies don’t know how autistic adults feel and how to best lend their support.
10 things autistic people wish their neurotypical allies knew going into April:
1. We really don’t want or need awareness. To most non-autistic people, awareness of autism is to be aware of a disease, to regard it with a somber recognition of how serious a problem autism is and how fervently a cure is needed. It doesn’t conjure the reverent solidarity that breast cancer awareness does for survivors, the bereaved, and their loved ones. Instead, it means that the world comes together to talk about the tragedy of autism.
2. Most of us do not want a cure. The vast majority of autistic adults do not want a cure, nor do they see autism as a disease. It is simply their way of existing, perceiving, and being. Autism is inextricable from the identity and perception of the autistic person, and a “cure” would mean to erase from them what is their core self and what their divergent minds can contribute to society. Many of us are quite proud to be autistic.
3. We wish you’d see us outside of the medical disability model. The medical model pathologizes our innate traits. We may develop on a different curve, have different strengths and weaknesses, and relate differently from the majority of the population, but those traits aren’t inherently negative. In order to be characterized as a “disorder,” a condition must impair a person’s quality of life.
For this reason, autistic innate traits are described in the medical model of autism in the most negative language because they are not how “most people” are. For example, we express empathy differently, but a lack of eye contact or not responding with verbal expressions of emotional solidarity does not mean we lack empathy. We show it in different ways, which may mean that neurotypicals misinterpret it, but that doesn’t mean it’s not profoundly felt.
4. We are extremely offended by puzzle pieces, “Light it up blue,” and Autism Speaks. Autism Speaks has dominated the world’s narrative about autism. They are a fundraising monolith, and their information distribution campaigns rank at the top of search engine results around the internet. The focus of their campaign was originally to scare the world into realizing how important it was to find a cure and eradicate autism… and to implicate vaccines as the culprit. They have continued to deny autistic perspectives, and only a minuscule portion of their many millions in donations actually goes to helping autistic people (often less than 1%).
Essentially, donations go to marketing puzzle piece propaganda and the international “brand” Autism Speaks has created. They are responsible for the “Light it up blue” campaigns. For a more detailed breakdown and alternative charities to support, click here. We ask that you share autistic-authored posts and articles in April and hashtag them #redinstead as a counter to Autism Speaks. Shout out the Aspergian so we can find our readers by hashtagging #theAspergian.
5. We prefer identity-first language over person-first language. This means that we prefer to be called “autistics,” or “autistic people,” or “aspies” (if that’s how one identifies) as opposed to “person with autism” or “person with Asperger’s.” But, every individual’s preference should be respected.
6. We are great at self-advocating, and we wish you’d learn about autism from autistic people. There are thousands of blogs, websites, organizations, and informational resources out there produced and managed by autistics. The autistic community is a thriving, tight-knit juggernaut of change and advocacy, and they uplift other marginalized populations by focusing on intersectional human rights outside of the neurodiversity paradigm.
They’re fierce defenders of children and dedicated scholars and researchers. They can be found on social media by searching the hashtag #actuallyautistic. You can find some of the most insightful, relatable, and informative posts right here on The Aspergian.
7. Autism doesn’t end at age 18. Most people tend to think of autism as a childhood disorder, but an autistic person is autistic every day of his or her life.
8. Function labels are deeply offensive and inaccurate. When someone is autistic, it has been socially acceptable to comment on how high- or low-functioning he or she is. The truth is, autism is invisible, and a person’s struggles cannot be measured by how a person seems to be performing. Often, “function” comes at great price to the autistic person, meaning that they have to hide or “mask” their innate traits and behaviors to appear more “normal.” You can read all about function labels by clicking here.
9. Autistic adults are the “severe” kids you think we are nothing like. Many of us, as adults, were the nonverbal or selectively non-verbal children you think are vastly different from the adults you see online. For example, I was not able to read fluently until 5th grade. In my second grade class, the readers were grouped by bird names. The top readers were hawks and eagles. Middle readers were blue jays and cardinals. I was the only crow at the bottom of my class.
Adults, though, have the ability to preserve their own dignity and autonomy by controlling how much the world knows about their weaknesses and struggles. There are linguists and writers who rarely, if ever, spoke a word in school. There are professionals who wear incontinence pads daily because they never were able to gain full control of their bladder.
Those who are non-verbal can often type or communicate other ways. Many of us still struggle with meltdowns, but we are able to accommodate for our own needs as adults and usually struggle much less. And, just like everyone else, we keep our most private moments private.
10. We can’t do it without neurotypical allies. Until organizations like Autism Speaks no longer monopolize the discussion about autism, autistic people will never be given a voice and room to speak about autism. Advances in behavioral and medical science, therapies, accommodations, social understanding, and disability rights are being stalled or halted by these “awareness” organizations which cause tremendous harm to autistic people.
Until our allies stop supporting and trumpeting these organizations, our uphill battles are punctuated with bigger and more pressing obstacles than we should have to mount on our own.
Autistic people need neurotypical allies to be more than just aware of autism, but to accept our differences and see our strengths and weaknesses as unique to the individual. We need your help to find our way into the conversation about autism, which means sharing articles by autistic people and supporting autistic organizations. We need employers and schools to accommodate for our neurological profiles, and individuals to understand how we relate differently.
So, let’s make April “Autism Acceptance Month” and shift the focus to autistic people as thinking, feeling, valuable human beings capable of speaking for themselves and their children. By reading this article, written by an autistic person, you’re off to a great start as an ally. Sharing it would be an even better gesture of Solidarity, and remember to hashtag #theAspergian and #redinstead so we can see how far our allies have carried our voices.
And, steal this image for your social media. You have permission.
Terra Vance is the founder of The Aspergian, a website created to showcase actually-autistic voices and autistic talent. She is also an industrial and organizational psychology consultant and founder and CEO of NeuroClastic, Inc. Her passions are in the intersections of social justice, equality, literature, Truth, and science. To contact Terra via email, click here. Buy Terra a coffee.