Autism Uncensored

Autism Uncensored is a 2018 vanity-published[note 1] book about people's failure to call Child Protective Services when it's obviously needed how it's totally OK to violently overpower your autistic child as long as you call it "therapy." Mother Whitney Ellenby chronicles her journey from hating her son to exploiting him for attention and career opportunities, eventually creating a business around doing applied behavior analysis (ABA) therapy.[3]

Content Warning

This article has a content warning for descriptions of extreme violence, torture, abuse, public humiliation and trauma.

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“”Please let that sink in. An autistic 4 year old has a SEVERE PTSD reaction to being confined in an elevator. That's not autism's fault. That's from abuse.
—Kaelan Rhywiol, autistic parent to 2 autistic children[1]

Autistic reviewer and parent Kaelan Rhywiol cried and vomited from reading the things Ellenby does to and thinks of her son.[4][5] If you don't want a similar experience, we recommend skipping this book.

#ElmoMom: A teaser for a horror story

Ellenby teased part of her book in The Washington Post. In the excerpt, Ellenby describes physically fighting and dragging her son Zack for over half an hour to see a Sesame Street show, despite blood being drawn. Horrified bystanders shouted for her to stop doing this to him, threw soda at her, and got a manager to escort her out of the auditorium. (She claimed it's her right to force her son to stay.)[6] The boy was supposedly "calm" afterwards (but it may have been resignation).

And what did her doctor say about her overpowering her son while he screamed in panic? That he just needed to learn who was in charge, and that a licensed behavioral therapist might have done the same. And instead of that being a statement on the horrible abuses of applied behavior analysis (ABA), this was supposedly a good thing.[6] The fact that Ellenby lacks the training necessary to restrain a child[3] (since it carries a risk of, you know, traumatizing or literally killing them) is apparently unimportant.

Reception
“”That made me cry. As upset as I was with the whole Siri book [To Siri With Love], that pales by comparison to that article I read. That's child abuse. It is… What the eff is that lady thinking? "I was desperate? People were watching me?" You took him into the damned situation in the first place! This isn't about her. It shouldn't be about her. She wanted him to see Elmo.
—Jane Kurchak, an actually sensible mother to an autistic daughter[7][note 2]

The article sparked controversy with the hashtag #ElmoMom. Autistic people, and people with any modicum of common sense, were generally horrified.[8]

The article went against the common sense of people who understood autism. "Adverse behavior is the result of sensory overload, not recalcitrance," wrote mother Christiana MacLeod.[9] While Zack's panic could have been PTSD-related, it's also possible that the experience was overwhelming or even painful to him.

The book itself

Disregard of Zack
“”He's not even a boy really, but the shell of a boy, an exquisite cutout of a child with no actual stuffing. He is damaged … deformed … disgraced. And his disgrace is my own.
—Whitney Ellenby, making it all about herself[3]
“”And Zack, staring vacantly into the distance, is a constant reminder that, while the physical child is still present, his very essence is not.
—Ellenby writing about her son when he is lost in thought[10]

Ellenby writes about Zack like he is possessed by autism. "Autism is angry. The infuriated beast of defiance is rearing his head,"[3] she writes about her son having a hard time. Because writing about your son like he's a monster is what good parents do. (With the way he's being treated, his anger isn't surprising.)

She describes a lack of love and care for her son. Ellenby fantasizes "if only I could slice open the skull of one of these other kids I could carve out my son's defective brain and exchange it with another child's…"[11]

Ellenby can't even comprehend her son's happiness. "As a toddler, it was *my* child who spun senselessly in circles, made conspicuous yelping noises, and screeched loudly whenever I dared redirect him," Ellenby wrote.[11] (It's called playing. Her son was playing.) She also said that "Zack had none of the defining childlike characteristics about which parents habitually boast,"[11] conflating her refusal to see good traits in her son with him not having any.

She also writes that Zack's autism is a punishment for her sins.[3]

In a rare moment of accurate self-reflection, she writes that she isn't cut out to be the mom of a disabled child.[12]

Privacy

Ellenby shares detailed personal medical information about her son in the book.[13]

Outright abuse
“”You've tortured and abused your autistic son to the point where he's near catatonia. And you're congratulating yourself for it.
—Kaelan Rhywiol[4]

The book opens with Ellenby ignoring her son's feelings and then physically squashing him into submission. She takes Zack onto an airplane and he experiences a meltdown (a breakdown autistic people may experience due to severe stress), which she labels a "feral tantrum." First she focuses her energy on swearing at her husband and arguing that she is not selfish for forcing Zack to go on a vacation he can't handle. Then she pins him to the ground and knocks the air out of him, despite the risk of smothering and killing him: "He ruins everything and I don't give a damn anymore whether it's his fault. We can't go anywhere or do anything because of him!" (Did she make any efforts to prepare him for a plane ride, or give him calming items like headphones or comfort objects?[14] Apparently not.[4])

Compare this to wikiHow's advice on handling meltdowns in autistic children. According to wikiHow, parents should stay calm, let the child take a break if possible (admittedly impossible on an airplane, though sometimes headphones and a fun tablet game can be sufficient), and do their best to calm and reassure the child.[15] Sitting on the child would constitute the exact opposite of this.

Even when Zack was a baby, Ellenby would use physical force to get him to do what she wanted. When he wasn't feeding himself at age 1, she'd grab his arm and roughly force his hand towards his mouth while he screamed.[13]

Ellenby describes screaming at her son and breaking things in front of him in a fit of rage.[16]

Zack developed traits common in abuse victims, such as trying to placate his mother by asking "Mommy, are you OK?" whenever he could sense her anger.[17][18][19]

Abuse in applied behavior analysis
“”I used to weep when Zack was dragged, screaming, to perform mandatory drills, but now something more sinister is inhabiting his eyes. A flatness, a dead stare, stoic obedience has rep[l]aced fierce resistance. We have beaten him down and drained his fight and that is sickening to me.
—Ellenby describing the effects of applied behavior analysis on her son;[20] she continued the therapy anyway

Ellenby put Zack in applied behavior analysis (ABA) for 40 hours a week from a young age, even though he was being mistreated and clearly hated it.[21] He was so stressed that, by age 4, he was smearing feces.[22] Kaelan Rhywiol notes that his behavior at 4 sounds like a PTSD reaction.[1] Again, at age 4.

Surprisingly, Ellenby discusses how ABA therapy undermines kids' independence and self-worth. But her fight-and-drag approach somehow doesn't strike her as doing the same thing. In fact, when she drags a screaming Zack to another show, but this time saying it's part of his autism therapy, people walk up to her and ask for her card so they can have the same thing happen to their loved ones too.[3] This illuminates a serious double standard: actions that are considered abusive to a regular person are considered therapeutic if they are done to an autistic person.

Does she regret it? Apparently not. Ellenby writes "What motivated this ordeal was a fundamental truth — that I cannot be happy if my son cannot function competently in his community."[23]

Favoritism
“”And loving my son suddenly feels like a cruel and unnatural exercise, like forcing my stomach to regurgitate something it has already devoured.
—Ellenby discovering she has a new favorite child[5]

When Ellenby's daughter Cassie was born, she was delighted to finally have a (supposedly) non-disabled child. She fantasized about leaving Zack behind and starting over. Zack, clearly in a panic that his mom would abandon him for the baby, acted out in numerous ways: overflowing the bathtub, hitting walls, and more. Eventually, Zack turned on the baby, and Ellenby attacked him.[17]

But then Cassie grew up enough to be able to talk, saying things like "From now until forever, I'm going to be friends with everyone except you!" Thus, Zack became the favorite. Suddenly his silence was a sign of his innocence and spiritual nature. She took him out, and realized that when she publicly announced that he's autistic, other people suddenly gave her attention and assistance.[3]

Reception

As of 2019, Amazon reviewers have given the book 4.8 out of 5 stars.[24] On Goodreads, it has 2.3 stars.[25]

Horrified people
“”I have tears streaming down my face & I can barely breathe from sobbing… Gods, I hope Zack doesn't read this.
—Kaelan Rhywiol[11]

Autistics and their loved ones have pointed out that the book depicts abuse.[26] They have expressed worries about Zack's well-being and what he has learned after repeated experiences of his mother forcing him to do things no matter how much he protested.[27]

They've also noted that Zack looks like he is being coerced in the publicity photos.[28]

Warrior parents fighting back against evil critics

Autistic author Kaelan Rhywiol made the mistake of reaching out to Ellenby, explaining why the book was dangerous. Ellenby's reply was so cruel that Rhywiol ended up crying and experiencing panic attacks.[29] Ellenby and her husband continued to contact Rhywiol after Rhywiol asked them to stop, and they said they would report Rhywiol to multiple websites.[30]

Letters to the publisher would be forwarded to Ellenby. She and her husband apparently sent nasty messages to at least 5 concerned writers.[31] One of the messages included gems such as "The second I see a curse word I delete the message forever," and calling autistic adults a "small gang" guilty of "harassment."[32] Some of the quotes attributed to her husband are truly horrifying.[33]

Publicly, Ellenby put on a more polite face, using the no true Scotsman fallacy to dismiss her autistic critics and claiming that they hadn't actually read the book.[34]

Zack

Zack, if you ever read this, we want you to know that you didn't deserve any of what happened to you. It wasn't right and it wasn't fair. We're so sorry that your mother chose to do these things to you and then tell the whole world about it. We'd erase the book for you if we could, but since we can't, the least we can do is say that it's not right.

We encourage you not to read your mother's book. She wrote down her darkest and most selfish thoughts. Reading those would likely be a painful experience, and she says things that are neither kind nor true.

Everyone deserves to be treated with basic respect. We hope you can find people in your life who treat you with the consideration that you deserve. Please feel free to reach out to the Autistic community online. You deserve to lead a good life and we hope you can find people who will help you do just that. We wish you all the best.

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gollark: It would be weird if they made packages for every single linux-firmware-broadcom update.
gollark: I assume that's the version.
gollark: Oh BEE, the void install on my pi is proving impossible to update.
gollark: Ah, I see.

See also

Notes
  1. Ellenby's publisher, Köehler Books, is technically a hybrid publisher — vanity (author pays a fee)/non-vanity — but since this was Ellenby's first book, she would have fallen into the vanity category.[2]
  2. This article is a good read if you need to restore your faith in humanity after learning about Autism Uncensored

References
  1. Twitter thread on chapter 13 - Kaelan Rhywiol
  2. FAQ Köehler Books (archived from March 23, 2019).
  3. Autism Uncensored: A Dangerous and Spirit-Crushing Book - Thinking Person's Guide to Autism
  4. Twitter thread on chapter 1 - Kaelan Rhywiol
  5. Twitter thread on chapter 19 - Kaelan Rhywiol
  6. Bystanders were horrified. But my son has autism, and I was desperate. — Whitney Ellenby in The Washington Post
  7. The Stories We Don't Tell: My Mom On Raising An Autistic Child And Why She'll Never Write About Me - Sarah Kurchak
  8. They keep publishing these violent articles — Lydia X. Z. Brown
  9. What I Want Autism Parents to Know, as an Actually Autistic Adult — Not an Autism Mom
  10. Twitter thread on chapter 8 - Kaelan Rhywiol
  11. Twitter thread on chapter 2 — Kaelan Rhywiol
  12. Twitter thread on chapter 4 - Kaelan Rhywiol
  13. Twitter thread on chapter 6 - Kaelan Rhywiol
  14. How to Get a Special Needs Child Through Airport Security — wikiHow. Parents of disabled kids generally make more preparations to help their kids fly, not less.
  15. How to Deal with Autistic Children's Meltdowns — wikiHow
  16. Twitter thread on chapter 15 - Kaelan Rhywiol
  17. Twitter thread on chapter 20 - Kaelan Rhywiol
  18. Who is Doing What to Whom? Determining the Core Aggressor in Relationships Where Domestic Violence Exists (PDF)
  19. The Truth About Abusers, Abuse, and What to Do — Psychology Today ("Most victims… placate and appease an abuser to deescalate tension and the risk of harm. It rarely works, and abuse typically continues.")
  20. Twitter thread on chapter 12 - Kaelan Rhywiol
  21. Twitter thread on chapter 10 - Kaelan Rhywiol
  22. Twitter thread on chapter 12 - Kaelan Rhywiol
  23. Twitter thread on chapter 31 - Kaelan Rhywiol
  24. Autism Uncensored: Pulling Back the Curtain on Amazon (archived from August 1, 2019).
  25. Autism Uncensored: Pulling Back the Curtain - Goodreads
  26. Publisher Defends Memoir Autistic People Say Depicts Abuse of Woman's Autistic Son - The Mighty
  27. My Question About 'Autism Uncensored' as an Autistic Dad - The Mighty
  28. Tweets about a photo
  29. In the interest of transparency
  30. Ongoing saga - Kaelan Rhywiol
  31. Tweet by Kaelan Rhywiol
  32. #Elmodad strikes... er... responds again to autistic activist - International Badass Activists]
  33. Meet #Elmodad: Nationally recognized industry leader, Keith D. Rueuben, joins Housing & Healthcare Finance as CEO
  34. On Speaking & Being Heard - Whitney Ellenby
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