April is Autism Awareness Month, and April 2nd was Autism Awareness Day, where, according to the charity Autism Speaks, you were supposed to “Light It Up Blue” by wearing something blue, ideally in the saccharine-sweet periwinkle shade that Autism Speaks (AS) uses for its logo. Or you could buy a blue lightbulb and put it into your lamp. Or buy an extremely overpriced set of blue glow sticks from the Autism Speaks website. It doesn’t really matter what you do, as long as it’s blue.
This is supposed to represent “autism awareness,” a phrase that carries no meaning. Most of us are already aware of autism; few even know what it is.
What awareness campaigns lack in substance, they make up for in fear. In one short documentary, Allison Singer, then an AS executive, discussed how she had thought about driving off a bridge with her daughter—while that daughter was in the room. After backlash, they made the video private on their YouTube channel, but failed to apologize. On top of this, its members and leadership have described autism as an “epidemic,” a “tsunami,” a “crisis,” and an “enormous problem,” comparable to “pediatric AIDS, cancer, and diabetes combined.” Autism, and by extension autistic individuals, are treated as a mysterious, evil, subhuman Other who are doomed (and more importantly, doom the normal family) to a miserable existence that is literally worse than death. This attitude continues to lead Autism Speaks and its supporters to seriously harm autistic people while pretending to help.
Autism Speaks remained on the anti-vax train long after the rest of us realized it was headed down a dangerous track. Andrew Wakefield, who falsified data that purported to show that the MMR vaccine causes autism, was first investigated in 2004 and had his paper retracted in 2010. Yet only in February of 2015, after a nationally publicized measles outbreak did Autism Speaks cease to oppose vaccines. Bob Wright, the organization’s co-founder, added the ambiguous-sounding note that “parents must make the decision whether to vaccinate their children” and “if parents decide not to vaccinate they must be aware of the consequences.” This soft stance implies that sure, you can let your child get measles and spread the disease around if you want–it’s all up to you. This fence-straddling stance is dangerous for children, but not for Autism Speaks: this way, they protect their popularity among both pro- and anti-vaxxers.
Supporters will point to the fact that Autism Speaks has provided autistic families with a variety of “resources,” though in 2014 (the most recent year for which data is available), only a pitiful 3.3% of their money goes toward “family services grants and awards.” Other purported resources include online “toolkits” that provide advice for autistic people and their families. For some unspecified reason, many of these articles are hidden, requiring the reader to fill out a brief questionnaire including name, mailing address, email address, and “relationship to autism” before accessing them.
The advice these resources give is often questionable. One packet that claims to help parents deal with their autistic children’s sleep problems does not even mention mainstream treatments for sleep disorders. Instead, it instructs parents to give their child a “bedtime pass,” which can be used once a night to get out of bed and go to the bathroom or get a drink of water. If the child stays in bed all night and does not use the pass, in the morning they can exchange it for a “special reward.” It is likely that the child will still be stuck lying bored and awake in bed, trying desperately to catch at least some sleep before the morning. The parents might sleep better, but the child will not. In fact, punishing hydration and bathroom use will make sleep even more difficult: have you ever tried sleeping with a full bladder and a parched throat? It’s not fun.
Another suggests parents should lock their kids in the house at all times and use a GPS device to track their location, to prevent them from “wandering.” If the so-called “wandering epidemic” actually existed, maybe they would have a point. But it’s questionable whether this is really a big deal. Research on this topic is very limited, and Autism Speaks relies on a single study, led by researchers from the International Autism Network, that uses a strangely broad definition of “missing.” Legally, a person must be gone for 48 hours to be reported missing, but the researchers recorded the average time an autistic child goes missing as 41.5 minutes. For non-autistic children, we call this “going for a walk” or “skipping school.” While autism may put said walkers and school-skippers at additional risk, the data hardly merits the panic it is receiving. Furthermore, disabled children are much more likely to be abused, and it is dangerous for Autism Speaks to ignore this context while encouraging measures such as GPS trackers and locking children in the house.
Many autistics do not view autism as something to be “treated,” yet Autism Speaks supports a variety of so-called treatments that use unethical and/or unproven means to achieve this unpopular end. Among them is Applied Behavioral Analysis (ABA), often described as the “gold standard” therapy for autism. Sounds nice, right? Its goal is to make the client appear “indistinguishable from peers,” which outside observers consider a form of recovery. In reality, ABA is a glorified, life-sucking acting lesson.
Generally, ABA therapists try to repress the repetitive movements that come with autism. As many autistic people will point out, repetitive movements, or stimming (an abbreviation for the clinical and vaguely creepy term “self-stimulatory behavior”), are important and harmless. Judy Endow, an autistic adult who works with autistic families, explains that stimming “provides a high degree of predictability, sameness, and routine” that “allow [autistic people] to participate in life” and insulate them from “the autistic perception of confusion, chaos, and change.”
On some level, behaviorists recognize this. They agree that stimming is “automatically reinforcing”; in other words, it fills some sort of need or provides some sort of enjoyment to the autistic person. However, the therapists then go to great lengths to stop autistic children from stimming, even while alone, because they think it won’t make them normal.
Much of the scientific literature on ABA discusses encouraging “appropriate play,” meaning up to 40 hours a week where children do not get to play, but instead get drilled in how to use toys in a way that looks “normal.” Common practices include repetitive, inane demands to touch your nose or point to the blue card, stuffing clients with junk food as a reward (and, conversely, depriving them of food until the demands are met), and ignoring the very same communication they claim to teach. “It’s just hard,” admits one ABA therapist on Reddit, “when you think about the fact that they are only children but we can’t acknowledge crying, or them saying they don’t feel well, or they have to go to the bathroom when they are in the middle of a tantrum or task, to the point where I have had clients wet themselves at the table. They still have to complete the task before they can go clean up in the bathroom.”
Who decided to call this the “gold standard” in autism treatment? Instead of improving life for the autistic client, it only encourages compliance and assimilation. In supporting ABA, Autism Speaks shows exactly what they think of autistic individuals.
Another therapy Autism Speaks promotes is called RDI, or Relationship Development Intervention. The RDI Connections Center’s website tells the reader that the process is “wholistic,” with a “w,” and that it can “activate the grow-seeking drive essential to remediating the universal impairments associated with ASD,” but it gives no information about what this process actually entails. In order to find out, you have to pay for one of their books, videos, or training sessions. RDI has only been tested twice, both times by the Connections Center itself. All of this screams scam, but Autism Speaks promotes it anyway.
Finally, in what activist Lydia Brown terms an “unholy alliance,” Autism Speaks invited the Judge Rotenberg Center to present itself as a “service provider” at one of its walks, and has ties to several of its staff members. The JRC claims “to provide each individual with the least intrusive most effective form of treatment to insure his/her safety, the safety of others, and promote healthy growth and development.” But this cheery publicity hides a darker truth: the school punishes children with painful electric shocks. One JRC publication admits to shocking children at an average current of 15.5 milliamps and a maximum current of 30 milliamps for behaviors such as “shrugging shoulders,” “putting head down on desk,” and crying.
According to their staff, the shock feels just like a bee sting, but according to Appalachian State University’s Department of Technology, a current above 15 milliamps causes a person to lose control of their muscles, and a current of 20 to 50 is a “severe shock” with “severe muscular contractions.” Currents at 30 milliamps or above can paralyze the breathing muscles. And this report only covers the use of the GED-1, the mildest of the shock devices they use. The GED-4, their most severe shock device, can deliver a current of up to 91 milliamps. To put this into perspective, 100 milliamps is enough to kill. Again, these shocks are given out for the tiniest infractions; one student was shocked 5,000 times in one day.
The Judge Rotenberg Center also deprives students of food, and sometimes forbids their students from speaking or being spoken to. It prides itself on its “reward store,” where students are allowed to socialize and play video games, but only when they are compliant enough to earn it. Outside the store, students are rarely allowed to speak to each other at all. One survivor recalled how staff members tied her down naked onto a board and filmed her while touching her in private areas. Though they claimed this was to help her bathe, the student was perfectly capable of showering on her own.
Yeah. Autism Speaks thinks this is in line with their mission to “bring hope to all who deal with the hardships of this disorder.”
Finally, Autism Speaks’ support of a cure for autism remains controversial among autistics. Many are actually quite scared by the idea. They say that they struggle not because of autism itself, but because of how they are treated as a result. “For ages and ages I badly wanted to be normal,” writes Naoki Higashida, an autistic boy, in a book titled The Reason I Jump. “But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am.” Why? Because “so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”
A handful of others do want a cure. Jonathan Mitchell, who claims he is “not so high functioning” compared to many autism rights supporters because he “never really had a girlfriend except for light dating stuff,” believes that the only reason someone would be proud of their autism is because “they feel worthless and have low self-esteem and neurodiversity provides a tempting escape valve.” Regardless of what one may think of Mitchell’s reasoning here, it would be misleading to pretend that nobody agrees with him.
In any case, autism is still highly misunderstood, and it’s unlikely scientists will find a one-size-fits-all cure pill anytime soon. And Autism Speaks only has so much money. Therefore, why not focus more effort toward things that would help improve autistic people’s lives now? If Autism Speaks cares so much, why hasn’t it done more to combat police brutality towards autistic people, or spoken out against restraint and seclusion in schools, or said something about the parents who post videos of their autistic children online, including the children’s full names, or tried to normalize repetitive movements and lack of eye contact, or fought to equip nonspeaking autistics with alternate forms of communication, or supported disabled people’s right to be paid at least minimum wage?
Only once anti-autistic discrimination ends should the search for a cure even begin, since social marginalization could coerce autistic people into submitting to procedures they would otherwise not have chosen.
Despite ignoring autistic people’s criticism of its methods, Autism Speaks has exploited their work. Just this week, they reposted a video by an autistic YouTuber named Cyndi, who uses the handle “streamofawareness” and vocally opposes Autism Speaks, without permission or credit. They did take it down after a flurry of angry comments and emails, but Cyndi received no apology.
The charity also plagiarized a quote from Kassiane Sibley, an autistic activist who has publicly protested Autism Speaks, put part of their slogan in her blog URL to mock them, and used their logo as an archery target. When Kassiane wrote an open letter complaining about this, they falsely claimed that the publisher gave them permission to quote her. Eventually, they took it out, but later put it back in while making the text white so that nobody could see it. This helped the document where they quoted her show up in more Internet searches. At no point in this process did they apologize for their actions. At no point have they ever apologized for anything.
In the words of their own slogan, “it’s time to listen”—time for Autism Speaks to listen to the people they pretend to serve.