A book that has yet to be published is already stirring controversy within the autism community. “Autism Uncensored: Pulling Back the Curtain” is written by a mother, Whitney Ellenby, of an autistic son, Zack. After an excerpt was published in The Washington Post on Feb. 27, autistic people called Ellenby’s actions depicted in it child abuse. Ellenby says she “lovingly pushed” her son, and her publisher, Koehler Books, is backing her up.
“Sometimes it requires — parenting involves physical force,” John Koehler, the publisher, told The Mighty. “It’s not child abuse, and I think that’s exactly what Ellenby did, meaning she used methods that seemed extreme.”
The Washington Post excerpt from Ellenby’s book describes a scene in which she forces her son, who is afraid of unfamiliar spaces, into an arena to see a live performance featuring Elmo, his favorite character. Ellenby ends up “physically dragging” Zack into the arena.
“The entire tone of the author’s article in the Post is offensive to me as a parent of an adult autistic son,” Jodi Murphy, a member of The Mighty’s autism community, said. “She uses words and terms like ‘burden’, ‘fellow parents in pain’, ‘desperate’, ‘tantrum,’ and the entire scene she describes horrifies me. This is all about her struggles, her expectations and her need to change her son in ‘her’ timeframe.”
Kaelan Rhywiol, an autistic author and editor who received an advanced copy of the book, broke it down by chapter on Twitter. Her reactions were similar to Murphy’s and others’ in the autistic community.
“My overall thoughts about the book are that I’m honestly appalled that anyone can think that is a loving parental relationship,” Rhywiol told The Mighty, adding:
I have kids, autistic kids, who share some of the same difficulties with how Ellenby paints her son Zack, and I would never even consider treating mine like that.
She even says it in her own words in her own book, in so many ways, it was never about Zack, it was about her — her needs, her happiness, her. Never about Zack. And that is just so far beyond appalling that I struggle to find words for exactly how appalling I find that.
On March 11, John Koehler released a statement addressing criticism and defending the publisher’s decision to publish the book, which comes out April 15.
“I appreciate the rights of people with autism (or anyone for that matter) to voice their opinions,” Koehler said in the statement. “I encourage you to voice your opinions elsewhere, because this publisher is deaf when you ask that any book not be published. That is blatant censorship and will only backfire and raise awareness about this book, thus causing it to sell more copies.”
In the statement, Koehler compared electroconvulsive therapy, a treatment for bipolar disorder that is typically chosen as a last resort after other treatments fail, to Ellenby forcing her son into a fearful situation against his will because other methods had not worked. In The Washington Post piece, Ellenby said doctors didn’t recommend her course of action.
People online continued to claim Koehler isn’t advocating for autistic people, but rather child abuse:
Non-Autistic Koehler is also, weirdly, a mind-reader. He tells us what the author’s child would say but can’t.
“You have no right to tell him how to live.”
We’re… not? We’re telling YOU that this book you’re publishing is abusive garbage. pic.twitter.com/yd9vg7ZERN
— Eb (@EbThen) March 13, 2018
Really look at yourselves rn, @koehlerbooks. Every single comment on your “advocating” post is from #ActuallyAutistic people and family members telling you, categorically, you are wrong. How can you possibly still think you’re doing advocacy right?
— Liz Verner (@LizVerner) March 14, 2018
Irresponsible and gross, @koehlerbooks
Not at all what needs to hit shelves during Autism "Awareness" Month.
Don't you dare call yourself an advocate for the very people you refuse to listen to.https://t.co/IU03iPJVqT
— Tara Shearer (@NotAratear) March 14, 2018
Koehler told The Mighty that the people on the autism spectrum who are boycotting this book are “incapable of having a dialogue about autism,” adding:
In fact, this morning with my staff, I said, ‘I think it’s kind of similar to women’s rights issues. Sometimes women don’t want to hear from men, as much as they would from other women, or Blacks, you know, if it’s something dealing with racial issues. It’s hard for them to take it except from their own. Same is true for people with disabilities, in particular people with autism, so if anybody outside of that circle states another opinion that they disagree with, they’re not interested in having a dialogue or a conversation. It’s just immediately, ‘You’re wrong.’
“We autistic people are perfectly capable of having a dialogue about things we live with every day,” Rhywiol said in response to the quote above, adding:
In fact, most of us communicate a lot better than allistics (people who aren’t on the spectrum) do because we’ve had to train ourselves how to do it. We live being autistic. Of course we can talk about it. There are so many of us basically screaming about what it’s like to live an autistic life, and what would actually help us, that only someone who doesn’t want to listen could even come close to saying what Koehler did.
After the excerpt was published in the Post, Ellenby responded to the controversy on her website on March 9, stating that those on the autism spectrum who take issue with the book don’t “resemble” Zack because of their ability to protest:
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. Just as I do not know what it is to be you, you cannot know what it is to be Zack. Or me. You personify independence, and as such represent what so many of us parents of autistic children dreamed would be our own children’s outcome. But that was not the outcome for Zack or millions like him.
Her response was met with more criticism:
My nose is stuffed up from allergies, but I can still smell the bs.
You know why I’m not “the same as your son”? For one, maybe because I’M NOT A CHILD. Consider perhaps that he’s going to grow up to be like me instead of writing me off as not knowing what I’m talking about?
— Amalena Caldwell (@AmalenaCaldwell) March 10, 2018
Ellenby told The Mighty her methods are not a prescription for others to follow, which she said she states in the prologue of her book. In the Washington Post article, Ellenby wrote that she could have been more patient with conventional methods, which would include gradual introduction of fearful situations, but that those types of therapies were not working.
“The purpose is for parents — they can have a very young child with autism — and I think this book would offer them some alternative options,” Koehler said, defending Ellenby. “The author’s not suggesting, ‘Oh, drop everything else that you have and do this.’ She states it pretty clearly in the prologue and other places that this is an alternative way of helping your child.”