No Foolin’: Forget About Autism Awareness And Lighting Up Blue
April 2 will no doubt bring you many a headline and call to do various things in the name of autism awareness because the United Nations designated it a decade ago as “World Autism Awareness Day.”
Ten years ago, heightening autism awareness may still have been necessary. But like all such days, the event has devolved into yet another feel-good moment with low-threshold investment: don a ribbon, change an avatar, put on some color that signals your awareness of Condition X. Dust off hands, pat self on back, and go about the rest of your business, secure in the knowledge that everyone will know how truly awesome you are as you telegraph your awareness of Condition X.
Days like this almost invariably degenerate into a posturing competition that extends even to the state level to see who can be the most ostentatiously committed to showing commitment without really committing to anything.
In the case of autism, the exhortation of the day, courtesy of Autism Speaks, will be to “light it up blue,” and powers that be around the globe will cause world-famous landmarks to do just that. Because nothing says, “I really care about autistic people” like going to the trouble to install blue lights on tall buildings and then flipping them on for a few hours. Presumably, the world will then be led to wonder, “Why is the Leaning Tower of Pisa blue today?” and eagerly turn to the Internet for answers, learning for the first time that a condition called “autism” exists. Awareness achievement unlocked. All done.
But you can do some real work that can make a real difference for autistic people (read here on using “autistic”), something that goes beyond sartorial expression, social media tricks or lightbulb purchases.
First, consider not “lighting it up blue” or wearing blue (unless, of course, you just want to wear blue like any other day) because that is a token of support for Autism Speaks, an organization that has explicitly and implicitly spent years stigmatizing and demonizing autistic people while it rakes in money from well-meaning folks who don’t understand how harmful it is to the people it claims to help. Some counter-campaigns that autistic people have initiated include “Tone It Down Taupe” and “Red Instead.”
Second, you will encounter many a call for “autism awareness.” Have you heard about autism yet? OK. So you’re aware. Step one is low, and you’ve mastered it. Now for the steeper climb.
For autistic people, awareness is not the goal at this point–acceptance is. Certainly, in the last 20 years, enough headlines have used the word “autism” to make people aware that it exists (here’s a sampling from the last week alone). But what do people who aren’t part of the autism community (and even some who are) really understand about autistic people? Because without understanding someone, getting to the critical, important, life-changing step of accepting them is impossible.
And the goal is autism acceptance. To be clear, acceptance, as Webster’s defines it, is “the action or process of being received as adequate or suitable, typically to be admitted into a group.” Have you admitted autistic people into your group–your school, your workplace, your home, your social circles, your ways of understanding? If not, you haven’t conquered the acceptance step yet.
Conquering that step means taking autistic people as they are, learning from them, and listening to them. That takes work. It takes more than pulling something blue to wear out of your closet or buying blue lightbulbs at Home Depot and feeling better about yourself. More than dropping a quarter into a Toys R Us coffee can. More than clickphilanthropy or adding a profile ribbon. If you really care or want to make yourself genuinely care, you’ll do this work. Here’s why:
Autism Speaks founder Bob Wright is described as a “longtime friend” of Donald Trump. Indeed, and no surprise, the White House will “light it up blue” on April 2. Trump has persistently and rigidly repeated again and again untruths about autism epidemiology and causation. It is no surprise that Wright is an avid Trump supporter who tweeted during the election that Trump was the “best choice for republicans (sic) and all Americans!”
Wright left a few Americans out of that calculation, most of them autistic, a group that many of Trump’s policies will harm immeasurably. One of the biggest threats is to science and evidence-based decision making. Trump is no fan of evidence, and for reasons that are unclear, he’s long been a true believer in autism conspiracy theories. One of his few confirmed charitable donations was made to Generation Rescue, an antivaccine organization founded by Wright’s daughter. Since then, Trump has doubled down on his earlier signals of buying into autism causation conspiracy theories and teased a partnership with Robert F. Kennedy Jr., one of the most hyperbolic and irrational antivaccine personalities in the US.
Meanwhile, while the man who occupies the Oval Office (well, a few hours a week, anyway, maybe) waves all of the flags in the conspiracy theorist’s semaphore manual, he seeks to siphon away money from scientific and education endeavors that do or could do autistic people the most good. If that money were to stay, here’s a sampling of what autistic people would like to see happen to it.
Then there are Trump’s cabinet appointees and the plans they bring with them, which threaten damage to autistic people on several fronts, including healthcare and education access. Even his Supreme Court nominee, Neil Gorsuch, has a track record of ruling against autistic children’s access to free and appropriate education, using a threshold in his opinion that the Supreme Court itself recently unanimously rejected as far too low. Pinning down any method behind decisions coming from the current White House is an elusive goal, but one common factor threads through many of them, and that’s a total and mystifying disregard for the autistic and other disabled people in this country.
While people at the highest levels of government still harm autistic people through a rigid insistence on long-debunked causation theories, we continue to live in a world where so-called warrior mothers will stuff their children full of anything and subject them to bizarre interventions to exorcise what they view as the demon autism because of the stigma layered onto autistic people with words like “epidemic,” “tsunami,” “toxic,” “monster,” and “damaged,” portraying them as infectious, diseased nonhumans possessed by an invader that must be elminated.
Autistic people are people, like you are people. It’s easy to put yourself in the place of people who are like you. Part of the hard work of conquering that acceptance step is putting yourself in the shoes of people who are not like you and taking a step, or two, or more and feeling what it would be like to be called a monster, to have someone give you a bleach enema, to hear your parents (autistic people hear just fine short of any unassociated hearing impairment) talking about you as toxic or a burden, to read (yes, autistic people can read, even when they are nonspeaking) articles excusing parents for murdering people who are like you–for murdering them because they are like you instead of taking readily accessible steps to keep you both safe.
We need good, useful research, and educational, healthcare, family and workplace protections more than ever, not less, to support the autistic community against such assaults.
And we still live in a world where charlatans can gad about promoting their lies, rushing into the open arms of lawmakers and other suckers and leaving behind them a trail of demeaned, dehumanized and sometimes dead autistic people. The intersection here is of diminishing autistic people to something less than human and then proposing money-making schemes that will remove the monster and restore the true human that was stolen from you. Acceptance means rejecting such premises out of hand.
In this climate, the burden–the real burden–is on nonautistic people to listen to what autistic folks are saying and to work on accepting them. Although many autistics have been engaging with non-autistics bravely, exhaustively, for years and years, it’s not their job to do this labor. It’s yours. The day is coming. April 2. Not World Autism Awareness Day. The start of Autism Acceptance Month. Get to work because this isn’t a step you can conquer in a day.
Some places to continue your journey
Suggestions for additions welcome
- Facebook page for the International Autism Acceptance Decade Event
- Site for Autism Acceptance Month
- Autistic Self-Advocacy Network
- A list of blogs by #ActuallyAutistic people, which also is a hashtag you can follow on Twitter
- Thinking Person’s Guide to Autism (disclosure: I am affiliated)
- If you’re ready for some of the toughest lessons: Lydia X.Z. Brown’s site
- Autism Women’s Network