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.
And, every March, autistic adults are already dreading April. Many of them report feeling traumatized by previous Aprils. They begin to mentally prepare for what is ahead, feeling powerless to stop it. They’re bracing themselves for what is on the horizon.
What autistic people wish their neurotypical allies knew going into April:
- We really don’t want or need awareness. To most neurotypical (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.
- 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. Most of us are quite proud to be autistic.
- 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. Our traits are interpreted in the most negative way because they are not what “most people” do. We express empathy differently, but a lack of eye contact or verbal expressions of emotional solidarity do not mean we lack empathy.
- We are 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 to 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 pieces and the international “brand” Autism Speaks has created. They are responsible for the puzzle pieces and 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.
- 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.
- 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. The Aspergian is a collective of autistic writers, or you can read more of my blogs here at PsychCentral.
- 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.
- 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.
Autistic people need neurotypical allies to be more than just aware of autism, but to accept our differences and see our strengths and our 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. By reading this article, written by an autistic person, you’re off to a great start as an ally.