Publisher Defends Memoir Autistic People Say Depicts Abuse of Woman's Autistic Son
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
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.”