OPINION: Autism ‘awareness’ and Autism Speaks are misleading

Julia Jackson  

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     “I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. … You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child. 

     “I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.” 

     This 2009 Autism Speaks ad, an outright demonization of disability full of fearmongering language, was my first memorable exposure to the conversation surrounding autism. 

     April is popularly known as Autism Awareness Month, including April 2 as Autism Awareness Day, thanks to terminology originally recognized by Autism Speaks and the United Nations in 2008. 

     Among autistic people and self-advocate organizations, it is Autism Acceptance Month. 

     Why the difference? Because that awful ad is the first thing that comes to mind when I hear the words “autism awareness,” and because Autism Speaks does not speak for autistic people; it speaks over us, actively exploiting us at best and sanctioning our abuse at worst. 

     Autism Speaks’ financials, which can be analyzed from their public audited statements, are one cause for concern 

     Their 2020 audit shows that their total revenue for the period was about $95 million, and their expenses were about $89 million. Of this, a total of about $35.6 million went toward “media and media services,” and about $22.2 million went toward “salaries and related benefits.”  

     Science and family services — two areas that Autism Speaks prides itself on supporting — received about $5.6 million and $1.4 million respectively. 

     Meanwhile, Autism Speaks has also promoted legitimately dangerous organizations, notably the Judge Rotenberg Center (JRC).  

     The JRC has faced repeated shut-down attempts due to countless incidents of malpractice and their reliance on aversive interventions, or punishments, for any unwanted behaviors, ultimately amounting to torture. 

     They use food deprivation, sleep deprivation, physical abuse and restraint, long-term isolation and electric shocks and have been known to do so for decades.  

     Autism Speaks included the JRC as a “service provider” at the resource fair that took place at their 2013 DC Walk Now for Autism Speaks event. 

     Another subject of controversy is that only one person out of Autism Speaks’ current 23-member Board of Directors is autistic. Of the others, the majority are current and former CEOs of various corporations, and about half are parents of autistic children. 

     John Elder Robison, the first autistic person to join the board in 2011, resigned in 2013, in the wake of co-founder Suzanne Wright’s Autism Speaks to Washington: A Call for Action op-ed. Wright referred to “the autism crisis” of three million children who “went missing,” who need us to “call out the Army, Navy, Air Force and Marines.” 

     Wright died in 2016, but her harmful rhetoric shaped Autism Speaks from its inception in 2005. An organization founded on fear and pity, the search for a “cure” and the scapegoating of vaccines will never truly be able to break away from these origins, no matter what it claims. 

     In recent years, Autism Speaks has tried to rebrand, embracing the term “World Autism Month” and redesigning their puzzle piece logo to look more colorful, while continuing to do very little to actually support autistic people. 

     Robison said it best in his response to Wright’s op-ed: “Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.” 

     Instead of donating to Autism Speaks this month, put your money toward organizations that don’t speak about us without us. Consider the Autistic Self-Advocacy Network (ASAN), the Autistic Women and Nonbinary (AWN) Network and the Autistic People of Color Fund

     Better yet, educate yourself. ASAN offers many resources, and you can start with their article “About Autism” or their statement on the 10th anniversary of Autism Acceptance Month. 

     Start listening to autistic people, who you’ll find using hashtags #ActuallyAutistic and #AutismAcceptanceMonth on social media. #ASDComicTakeover on Twitter is full of autistic users’ educational and personal stories presented visually, while #RedInstead exists to combat Autism Speaks’ Light It Up Blue campaign. 

     Autistic people aren’t missing puzzle pieces, and we’re speaking for ourselves, whether online or in real life, with our voices or with augmentative and alternative communication (AAC). 

     Awareness isn’t what we need. Acceptance is.