CW: Ableism, anti-autism speech, death
I have an automatic, almost traumatic, reaction to puzzle pieces these days.
Nothing against actual puzzles, really. They’re boring, time-consuming activities that I don’t find interesting, but they’re not terrible.
What puzzle pieces have come to stand for, though — autism “awareness” — disturbs and scares me. The simplifying down of the rich, complex lives of autistic people to puzzles that are missing a piece — and that can be fixed through the right combination of therapy and behavioral modification — shows just how far we have to go.
“Autism” is short for “autism spectrum disorder (ASD),” a diagnosis that encompasses a number of previously differentiated disorders, including Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified. Symptoms of ASD vary widely based on age, cultural background, and the individual, but generally include trouble interacting with others, not understanding social cues, sticking to a strict routine, having intensely focused special interests on specific topics, and moving or talking in a repetitive and stereotyped manner.
Despite the fact that autism can be diagnosed for anyone at any age, it is heavily associated with elementary school white cisgender boys. I am autistic; I am a non-binary person who was diagnosed at age 11. I am now 19, almost 20, and the way autistic people are continually spoken over both upsets and angers me.
It is perhaps because of the young age of the stereotypical “autism patient” that autistic people are often deprived of our autonomy as well as shoved to the side within our own healthcare and decisions. It is easier to ignore the wishes of a 5-year-old than it is to devalue those of a 15- or 50-year-old.
When autism becomes synonymous with a non-speaking, asocial small child, as it has in the popular consciousness, it becomes even easier to sort all autistic people into two groups: those who are assumed to have the same communicative skills as the stereotypical autistic child and those, by virtue of them having more “normal” communicative skill, can’t possibly be genuinely autistic.
I’m not going to lie here: I am more independent and more “typically” functioning than many autistic adults. I speak, communicate, and act in “normal” ways. My repetitive actions — stims, short for “self-stimulations” — are unobtrusive and socially acceptable. I don’t have comorbid intellectual disabilities, which are common in autistic people.
I fall in the category of “too independent to be autistic,” yet I still am.
April is Autism Acceptance Month, and I use “acceptance” deliberately over “awareness.” Virtually everyone is aware that autism exists and affects people, but autistic people are still far from being accepted.
Autism “awareness” too often focuses on what autism “takes away” from families and how it affects those around autistic people, not autistic people. When “awareness” organizations talk about how “Autism Speaks. It’s Time to Listen,” they don’t consider that autistic people, who have immeasurably complex identities, are speaking, but people don’t listen to us because we’re either too “low functioning” to make sense or too “high functioning” to count.
Furthermore, Autism Speaks, one of the best-known autism awareness charities, whose 26-person Board of Directors only has two autistic members, has repeatedly promoted vaccines as a cause of autism (they’re not), allied with a center that uses electric shocks as a method of behavior control, and produced a video where a mother talks about wanting to kill her autistic child.
I’ve written before on where these scare tactics and “mercy killing” discourse around disability leads to: actual disabled people being killed by loved ones. Autistic people may not suffer from autism, but we do suffer from people’s misconceptions around autism and what it means.
There is not a cure for autism. Focusing on a cure, instead of therapies and accommodations that help autistic people interact with our worlds, actively harms us. Cure mentalities leave out anyone who isn’t interested in a cure (including many autistic adults). When funding that could go to therapy and support services is diverted toward cure research, vital services go underfunded.
Much of the research, money, and time that go into cure ideology could go into therapies to help autistic people deal with symptoms, especially when those symptoms are debilitating within our environments. There are ways to treat and help people cope with more unpleasant symptoms of autism that don’t involve portraying autism as a terrible spectre that “takes away” seemingly normal children.
In a cure-focused world, the puzzle piece has become the symbol of autism. It is used by groups like Autism Speaks and the Autism Society, neither of which advocate directly for self-advocacy, as well as used by the professional journal, Autism, whose articles often do not center the voices of autistic people.
Research shows that while people associate the puzzle piece with autism, they don’t have positive views about it. In the study, “[participants] associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing.”
Kabie Brook, writing in the aforementioned journal, Autism, states that “I am a fully rounded human, as are all of my siblings within the Autistic community; we cannot be pigeonholed or symbolised by any one thing, we are far too individual for that.” Puzzle pieces force autistic people into a social role where we are seen as inherently lacking and second-class citizens because of our differences.
Autistic people can be and are self-advocates regardless of our ability to communicate in a “typical” way. It is truly disturbing that so many people refuse to work toward a world in which autistic people are welcomed as self-advocates, or members of communities that both welcome our strengths and support our weaknesses.
Autism awareness without acceptance of autistic people leads to the belief that autism is a disease, not a different neurotype that is just as worthy, if atypical. If autistic people are missing puzzle pieces, everyone is missing a few puzzle pieces. It’s just that non-autistic people are supposedly quirky or different, rather than “damaged” or “ill.”
I can say, as an autistic person who has skill in “acting” non-autistic, performing neurotypicality has its drawbacks. The price I pay for hiding my identity and perfecting my act at all times is utter exhaustion: physical, mental, and emotional.
When I am alone in my room, I can be myself. I can make noises; I can jump and roll and flap my hands without fear of being seen; I can rock back and forth to calm myself. My body and my identity once again become my own.
This very human cost — the fact that we, as autistic people, cannot be ourselves in public — is almost never shown in ads by agencies begging for “research” money. It’s outweighed by a parade of vignettes of parents talking about how terrible their lives are because of their (often non-speaking) autistic children and how desperate they are for help, such as the “I am Autism” ad that portrays autism as an incurable disease worse than cancer.
If those parents are desperate and angry about their child’s autism, I can only imagine the horror that is being their child: at the mercy of an angry parent and a world that doesn’t understand them or how they communicate.
When those children become adults, we are deprived of independence and identity based on how well we can pass as non-autistic. For many of us, the exploitation of our stories (and stories of those around us) doesn’t end at age 18.
Because April is Autism “Awareness” Month in popular parlance, my social media — and probably a lot of other people’s, too — has been inundated with people calling to #LightItUpBlue, an Autism Speaks slogan that apparently refers to the (shaky) idea that more boys than girls are autistic.
Nope.
Light it up #RedInstead. We, autistic people, are literally dying to be understood and accepted. We’re not going to go away, and we’re not going to just become non-autistic because nobody gives us the deserved attention and place to speak.
Autistic people are, and will, always be experts on autism, just as all disabled and neurodiverse people are experts on their disabilities and neurodiversity. We know what our lives are like, and we know what we need in order to function well.
Listen to us. Let us lead. And, please, accept us for who we are.
Donnie TC Denome PZ ’20 is a public health major from Sunnyvale, CA. In their spare time, they enjoy knitting hats.