The trend of allistic parents disrespecting, exploiting, and profiting off of books about their autistic children perpetuates painful stigma—and continued abuse.
In the excerpt from her forthcoming book, Autism Uncensored, that was recently published in The Washington Post, Whitney Ellenby tells us about the time she physically restrained and dragged her 5-year-old autistic son to see Elmo perform at a “Sesame Street Live!” show. She describes fighting off his fists, pinning him down, and inching — her son shrieking and flailing, trapped between her legs — toward the auditorium’s entrance, an effort, she claims, “to save him from a life entrapped by autistic phobias.”
While some parents of autistic children have celebrated the article for showing them that they are not alone, the response from autistic adults to the violent actions in the piece and her book more broadly, has been, deservedly, negative. As Eb, an autistic writer, tweeted, “Meltdowns like the one described in this article aren’t ‘problems to solve.’ They’re communication.” Through his, Ellenby’s son was communicating something important to his mother — and her response was to push him, literally, into doing something he didn’t want to do, completely disregarding his autonomy.
Sadly, this is merely the most recent high-profile example of an allistic (non-autistic) parent, disrespecting and dehumanizing their autistic child then exploiting them by publishing very private, personal details about their life. Judith Newman, author of To Siri with Love — a collection of supposedly humorous stories about her then-13-year-old autistic son — received similar backlash from actually autistic adults last year. Among her various repugnant views, she asserts that her son is unfit to become a parent because he is autistic, detailing her desire to have him sterilized. “I am still deeply worried about the idea that he could get someone pregnant and yet could never be a real father — which is why I will insist on having medical power of attorney, so that I will be able to make the decision about a vasectomy for him after he turns 18.”
As may already be clear, while these types of books and articles may be about autistic people (mostly children who cannot consent), they are not for them. Instead, they are authored by and for parents and other allistic adults — at the expense of the vulnerable and marginalized community they claim to be advocating for.These books are authored by and for parents and other allistic adults — at the expense of the vulnerable and marginalized community they claim to be advocating for. Click To Tweet
And this trend keeps repeating. On smaller scales, as with Jill Escher, president of Autism Society San Francisco Bay Area, who wrote a cringe-worthy account of the financial and superficial costs her autistic son is causing her. Or larger ones like, Amy Lutz, author and outspoken critic of the neurodiversity movement who said that writing about her autistic son without his permission isn’t exploitation because he’s incapable of providing consent. There are “very few costs” to publicly writing about his life because he “will never go to college, seek competitive employment, or get married.”
Autistic writer Sarah Kurchak refers to this subgenre of writing as the “Autism Parent memoir,” which often overlaps with the realm of Autism Warrior Parents (AWPs) — a term that it is both embraced and rejected by parents of autistic children. AWPs, as Shannon Rosa wrote, “insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired, and how that wiring affects their life experience.”
If that sounds like an exaggeration, take Marcia Hinds, whose author bio states that she and “her family survived their war against autism.” According to a review of her book, I Know You’re In There: Winning Our War Against Autism, “She openly writes what we have all felt at one time or another. We love our children, but we do not love the autism.”
Rather than unconditionally accepting her son and seeking to better understand his needs, Hinds believed an autism diagnosis meant “there was no hope” and, diving headfirst into the realm of pseudo-science and conspiracy theories, that “by treating hidden viruses and infection,” autism can be cured. For her, in order for there to be hope for her family and her autistic son, his autism needed to be destroyed.
And Hinds isn’t the only parent latching onto harmful medically disproven theories linking vaccines to autism. Mary Cavanaugh, author and parent of an autistic child, states on her website, “I now know all three of my children have been vaccine injured.” She is a member of The Thinking Moms’ Revolution, an online community and book, where mothers share tales of fighting to rescue their children from autism. “Suspecting that some of the main causes may be overused medicines, vaccinations, environmental toxins, and processed foods,” the book’s synopsis states, “they began a mission to help reverse the effects.”
Terrifyingly, this is far from an obscure movement. Celebrities like Jenny McCarthy have helped bring these harmful conspiracies into the mainstream.
The cumulative result is that many, many autistic children grow up in environments rife with physical confrontations like the one that occurred in Ellenby’s article, or in homes that reject basic, peer-reviewed medical science, or with parents who demonstrate a complete and utter disregard for their autistic children’s autonomy — and all of it is framed as love.
But it is not love; it is abuse.
When I read Whitney Ellenby’s piece, the parallels between her and my psychologically abusive mother were too great to ignore. Just as Ellenby misinterpreted her son’s reluctance, disinterest, and outright refusal to engage in an activity as some sort of phobia to be overcome, my mother forced me into conquering my so-called fears — “for my own good.” She saw the way I interacted with the world as different from other children, and deemed that difference the enemy.
It has taken years to unravel and untie the clutter of psychological knots and trauma she left me with — and there are, no doubt, more waiting in the wings — but I can say with absolute certainty there’s a stark difference between a professed love and real, unconditional love. Failing to accept and trying to change or attempting to “fix” someone who is not broken — no matter the intent — is not the same as loving them. As writer and disability rights advocate Lydia Brown wrote to Judith Newman, “You may believe you love your son. But we, autistic people, hear what you have actually said, which is that you hate him. You love a version of him that does not exist.”
While I’ve not published a single piece of writing in almost a year due to hyper-empathy and burnout, I have been discovering and healing, coming to terms with the fact that I am autistic, and, contrary to the dangerous message AWPs continually insinuate, that it is nothing that should bring me shame or fear.
Memory and trauma are a mindfuck, but scenes flash before my mind’s eye — having my hands restrained at my desk in grade school, or instead having inside-out gym socks taped to my hands so I couldn’t fidget or distract others, but could still hold a pencil to do schoolwork. And now I’m angry, again, at my mother and all of her enablers for shaming and punishing me for things I couldn’t control or understand. I’m livid at her and my teachers for forcing me to put gross tasting things in my mouth whenever I did something that society deemed weird and unacceptable. I’m angry as fuck for crying and crying while telling the damn truth about not understanding something, not being able to stop doing something, or not being able to adequately articulate why I did something… And then being disciplined for my “rebellious attitude,” for disobedience, or for not trusting God enough because that asshole doesn’t give you any more than you can handle.
And I believed the lies, I believed it was my fault, I believed I was unworthy and failing God and my family every day — so I punished myself and stopped trusting those who professed their love for me and worked diligently to change myself.
It doesn’t have to be this way.
In the wake of Ellenby’s piece, Sarah Kurchak interviewed her allistic mother, Jane, to get her take on this spate of high-profile Autism Parent memoirs. The interview highlights a wholly different model of autism and parental love. Where Ellenby described her exploitative book as “one woman’s story, my truth and my love letter to my beloved son,” Jane focuses on her daughter’s well-being in a world that too often punishes neurodivergent people for being who they are, advocating that she not read Ellenby’s work: “I see you try to function in a pull-up-your-bootstraps neurotypical world. And I know if you read this book, it will crush you. … So it’s a selfish motive because I don’t want you to hurt.”
Later Jane says to her daughter, “I have always said to you, to anybody that will listen to me, I have learned more about life in the world from you than from anyone or anything else… Watch your child and learn from them. Take your cues from your child.” For her, the relationship she has with her daughter goes both ways. “Just because I’m your parent doesn’t make me right… My reality is that my life is a better life because of you. And I just want you to know that I’m proud.”
Reading Jane and Sarah’s conversation brought me to tears and offered up a glimmer of much-needed hope. Without ever saying the words “I love you,” Jane demonstrated how very much she respects, accepts, and loves her daughter merely in the way she talks about her — and how they’ve navigated their life together, as a team.
By contrast, the only “uncensored truth” Ellenby reveals in her writing is that she sincerely believes her abusive actions are loving ones. But how do things change if the abusers, their apologists, and the exploitive industry that profits off of them, refuse to stop — let alone acknowledge that they are harming others?
We need to be able to speak for ourselves, but instead, #ActuallyAutistic voices are too often shunned and silenced, while the voices of allistic parents raising autistic children are lifted up and praised. A common retort to the autistic adults who condemn this genre of writing and alleged advocacy is that our viewpoint is inconsequential because we aren’t autistic enough. Our needs don’t compare to the mountain of needs their children require because we are able to raise our voices and organize, and by doing so, we are making things harder for autistic people — like their children — who require more care.
Ellenby herself made this argument in response to the backlash her article caused, writing, “You adults with Autism who are reaching out to me in brilliantly worded protest, you who are capable of self-advocating, organizing, who have children of your own — you in no way resemble Zack.”
This is not a new argument. Amy Lutz wrote in 2013, “So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it ‘they don’t need, but my daughter does. If she were able to function at their level, I would consider her cured.’”
Dr. Jennifer Sarrett, Lecturer at Emory University’s Center for the Study of Human Health, carelessly pontificated that broadening the definition of autism, “could divert attention and resources from the people who need it the most — the significantly disabled.” But this mindset only makes it harder for all autistic people, and further stigmatizes many of us as being not “autistic enough,” while doing nothing to counter the ableism we confront every day.
Whether we were diagnosed early and our guardians taught us how to hide our autistic traits (or force them out of us) through harmful applied behavioral analysis techniques, or we learned the concept of masking or practiced self-degradation on our own as a way to “appear normal” to everyone else — existing as an autistic person in a world that hates us is physically and emotionally debilitating.
And this is why the themes apparent within the ever-rising tide of Autism Memoirs are so infuriating. Autistic children are given little to no autonomy. Instead of being treated as living, breathing, beautiful, and complex human beings — they’re reduced to a plot device, a mechanism for their parents to exploit and profit from. And even worse, such memoirs frame autism as the thing that needs to be battled — rather than the unjust, ableist world we live in. These narratives center the parents, attempt to sever an important component of their child’s identity, and, instead of making the world a better place for them, force their children to change for the world.
It doesn’t have to be this way.Existing as an autistic person in a world that hates us is physically and emotionally debilitating. Click To Tweet
I believe that these allistic parents do love their children, just as I believe my parents loved me. But despite what they say, their actions are not those of love, which, by definition, requires respect and acknowledgment of another’s autonomy. I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.
Now I’m almost 35 years-old and still recovering and unlearning the destructive messages I grew up with, as the effects of trauma don’t just disappear when you leave the traumatic environment. Those of us who have survived and are voicing our anger to these parents and their enablers aren’t “internet bullies.” We are survivors who don’t want autistic children of any age to be abused. Listen to us. Believe us. Your child does not need to be cured, they need to be respected, listened to, and above all, loved — truly loved.