Discuss and debate the issues that mean the most to you.
April is the partition of time people on the autism spectrum are allotted to remind the world that they are human beings with human feelings. Every year, we get an entire month to bring "our condition" — that is, that of being, thinking and communicating differently than agreed-upon social norms — to the attention of a culture that might just as soon forget our existence. We are told that the problems we as spectrumites face — discrimination in work and school; brutality from professionals, service providers and parents alike; ostracization and ridicule — would be mitigated if only people were more "aware."
This is complicated.
On one hand, the growing movement for "acceptance not awareness" heroically championed by self-advocacy networks is right on. The loudest voices in the "autism awareness" arena have been silencing and exclusive to non-autistic people in deeply harmful and invalidating ways (I'm looking at you, Autism Speaks). They propagate misinformation about the real experiences of autistic people and create environments where sympathy for parents who murder their autistic children is encouraged and cultivated. They limit the ability to communicate to verbal or written language and advocate for "treatments" or "interventions" such as ABA or social skills classes that force people on the spectrum to contort themselves to fit in and come as close to neurotypical functioning as possible while disregarding the human beings they are.
More broadly, though, I think much of the "apathy" we're seeing in public life — low voter turnout, sputtering activist movements, that so many seem to simply be burning their heads in the sand — is actually "awareness fatigue." We don't have too little information; in a global society with a 60-second news cycle where we have access to more information every moment than we could possibly digest properly in a lifetime and the technology to remain connected to it all day every day, I think we've got too much information.
"Autism awareness" diminishes an entire group of people's daily reality to a cause. A single month for "autism awareness" can make it seem like the experiences and lives of one in 68 children, to say nothing of the adults who may or may not be diagnosed, is an optional topic to get involved in or not.
On the other hand, as I've sought services and support after being diagnosed with ASD (Autism Spectrum Disorder) at the age of 28, I have come across deep ignorance and downright denial on the part of professionals claiming to provide said support. I was technically diagnosed with Asperger's since the DSM-5, which concatenated autism and Asperger's to one fairly confusing and ambiguous "spectrum," would not be released until six months after my assessment. Asperger's itself did not become a distinct diagnosis until 1992, which, though that was more than 20 years ago, is fairly late in the game for many old-school clinicians.
So, I sort of understand the lack of knowledge among professionals. I don't excuse, though, the notion I've surprisingly often come across — that I must have been misdiagnosed and that I really have something like borderline personality disorder (BPD), or OCD, or a vicious combination of PTSD, depression, and anxiety instead. I did some research: BPD, OCD and "conglomerate" diagnoses are what female Aspies are very commonly misdiagnosed with when what they really have is ASD. This is sexism and stems from the time-to-be-retired notion that "only boys have autism," or that "autism is much more common in boys than girls." Perhaps this is because it is more commonly diagnosed in boys than girls. And perhaps that is because of the ingrained sexism that has led researchers for the last sixty-plus years (autism was first used as a diagnosis in the 1940s) to focus mostly on boys.
"Awareness" about how autism affects girls and women is severely lacking on even basic levels, not just in broader society but in professional circles, which creates even more societal and personal hurdles for spectrumites. But "raising awareness," as practiced by well-established and well-respected groups like Autism Speaks, requires autistic people to justify their experiences and existences simply because they are not readily understood without effort by neurotypical folks. One damaging stereotype of autistic people is that we "lack empathy" but who, in the above-mentioned scenario, lacks empathy there?
I am completely for acceptance above the present form of awareness, especially because the way the most magnified voices are engaging in awareness paints autism not as something to "be aware of" but autistic people as folks to "beware" of. I also think awareness is still needed. Those who wish to provide services to help autistic people navigate a world that was not made for them need to have basic knowledge about our challenges. My hyper-vigilance about my environment stems not from OCD but from the fact that I experience the world as fast, loud, bright, hard, smelly, and sharp on sometimes traumatic levels. Imagine driving at 70 miles per hour with the windows down through a tunnel, being passed by semis left and right — that's a good approximation for how things like normal traffic, applause, toilets flushing and airplanes passing overhead sound to me.
If you've ever worn a suit made of camel hair or sat on a cactus, you might understand how seams, tags and clothes that don't fit right feel against my skin. If you've ever had a migraine, you have experienced what walking into a grocery store with those infernal buzzing tubes of fluorescence look, sound and feel like to me. If you've ever had searing tinnitus, you know what a phone ringing sounds like to me. Everyday life is a rapid-fire series of blazingly intense events that do not settle into an undifferentiated blur when you've got a nervous system turned up to maximum.
We autistic people are asked to bridge the gap created by neurotypical/ASD differences every day we want to be out in the world; acceptance doesn't feel like it goes far enough in asking that neurotypical people return the effort. I'm also not for acceptance as a handout or a favor. Just because I'm not intuitive and can't guess what people are thinking as well as others might be able to doesn't mean I'm not valuable (really, no one's that great at reading people's minds; it's just that the odds of guessing what someone else is thinking based on your own are higher for a neurotypical person than an autistic one). Just because I don't make eye contact doesn't mean I'm not listening (and actually, in certain cultures, not making eye contact" wouldn't be a symptom of a condition, it would be called 'showing respect').
I snap my fingers or rub my palms together repeatedly or play with the bracelets I intentionally wear as fidget toys to self-soothe, like a neurotypical person might watch TV or have a glass of wine, not because I'm dangerous. I take things literally and just because I know I do that doesn't mean I know how not to. I don't lack empathy; sometimes, I'm so overwhelmed by the ugly things people do to each other, the unflappable devastation of the beauty of our world or even the "small" grief of a blown-off promise or lack of follow through, that I simply shut down. My lack of response is not an indication that I don't care but rather a sign that I care very much, that I have an emotional, psychological, and relational system turned up to maxim.
I want people to be aware of how different the world — external as well as internal — is for my fellow spectrumites and I want people to accept these differences without trying to change or treat them so that we can, with enough prosthetics, function in ways that don't make neurotypical people uncomfortable. But what I want the most is for these differences to be seen as gifts, not just for us but for others too. Gifts for those who don't hear every sound in a situation, including that car about to turn the corner sharply as you're stepping from the curb, for people who don't feel they have permission to self soothe in public even if that's where they are when they get devastating news, and for a society that accepts broken commitments as the currency of relationships rather than taking people at the literal words they say and expecting them to mean something.
Acceptance literally means "the action or process of being received as adequate or suitable, typically to be admitted into a group;" one of the definitions of awareness is "concern about and well-informed interest in a particular situation or development." From this autistic person's perspective, it's time for both.