This is an incredible book written by the mother of an autistic child. She tells exactly what her life raising an autistic child is like, without pulling any punches. She clearly explains that no two autistic children are the same so what works with her child may not work with another. This is her story. She starts with a singular truth____ "that to live with an autistic child is to experience great joy and exquisite pain in equal measure"
I began reading this book feeling I could relate but soon realized that my situation is much different. My grandson's autism is so much more mild. Her descriptions are totally different than the life I lead, but still very interesting.
I think that someone with a severely autistic child would find great comfort in this book. They would understand that they're not alone.

Content Warning: Child abuse, graphic depictions of violence against a child, suicidal ideation, and ableism.

When Whitney Ellenby’s article about her trip to see Elmo with her autistic son, Zack, was first published by The Washington Post, the sheer, harrowing violence of it shocked many autistic adults, myself among them. Frightened and angry, I acquired an eARC of Autism Uncensored, the book that spawned the article, from NetGalley in exchange for an honest review.

Martyr Mommy:

The book opens up with a flashback to a flight that Ellenby and her husband are taking with their autistic son, Zack. This opening chapter in many way encapsulates the entire experience of the book, revealing inherent problems in Ellenby as a person, and in her attitude towards autism and her son.

We arrive on the scene as Zack is devolving into full-scale meltdown—which Ellenby insists are tantrums—terrified of the new and confusing experience of an airplane. Like in other cases in the book, Ellenby made no attempt to warn her son of what an airplane is or does. Slinging around words like primal, feral, and terrifying, words she uses throughout the book to describe autism, Ellenby goes on the attack:

A profound gesture of generosity—until his book is ruthlessly kicked from his hands and I am now wrestling my son to the ground in the narrow aisle, frantically pinning my entire body against his just to keep him contained.

Ellenby’s modus operandi in these situations is to announce to all and sundry that Zack is autistic, then praise people for their compassion as they look on, doing nothing while she physically abuses her son.

Another important pattern of Ellenby’s to be aware of: She loves excuses and CYA. She insists her “unflinching honesty” is necessary to add anything new to the discourse, as if she can somehow absolve herself of the horrors she perpetrated against her son. She insists that she doesn’t think Zack can consent to have his story told, but quickly excuses herself for doing it anyway, claiming her son as a shining example of “progress in the often inscrutable world of autism,” because she “knows in her heart he’d approve.” And she frequently mentions that these are her methods meant only for her son and she isn’t endorsing them for anyone else—even though a later chapter, The Commodization of Hope, shows that she clearly knows the desperate levels to which parents will sink. She continually, in the book and to the public, insists that she has not abused her son, but she is damned by her own words:

I have publicly tackled my screaming child to the ground and pinned him down for the sake of allowing him to enter a movie theater for the first time.

There are other reviews that talk about Ellenby’s biographical chapters, her awful attitude in her brief stint working for the Department of Justice in defense of disability rights, and her pregnancy. I would rather focus on her violence and hatred towards Zack. It’s important to understand that it began even before his diagnosis, at the first signs that Zack was developing atypically.

At first, Ellenby is openly hostile to the idea her child could be different. She makes up excuse after excuse for why Zack does not do what she expects. But eventually her frustration with Zack’s atypical development—in this example, his inability to pick up food and feed himself—explodes into physical violence against her son:

In exasperation, I placed an oblong teething biscuit into his palm and forced his little fingers to wrap around it, which they did. But he steadfastly refused to lift his arm, and held it so rigidly straight and rod-like that I grabbed it impatiently, forcibly bent his elbow and shoved his arm upwards while he let out a blood-curdling screech.

She is “tired of him refusing to help himself” and felt no compunctions as she “overrode his screams.” And since this appears to have worked, Ellenby declares it a victory—though I would argue any small child would do whatever was necessary to avoid such terror.

Finally, after many fits and starts, Zack is diagnosed with autism. Ellenby breaks down in the doctor’s office, sobbing and carrying on as if someone had told her that her son was terminal and had mere weeks to live. Clearly, she thinks the doctor might as well have. As she drives home, struggling to see through the veil of tears, she thinks:

Go ahead, let me smash head on into a tree. I welcome the impact, a merciful exit. Because I’ve just learned I have nothing to live for anymore and nothing to lose. My child is gone, you see, he’s just nineteen months old but his life is already over. He is gone.

The sheer terror of these words cannot be expressed strongly enough. Thoughts exactly like these have led to numerous murders of autistic children by their parents or caretakers. Zack was one small swerve away from joining that number.

For several weeks, Ellenby wallows in grief over a child who is still alive. Brandishing words such as disgraced, damaged, and deformed, she sees Zack as “an exquisite cutout of a child with no stuffing.” But eventually Ellenby picks herself up, dusts herself off, and prepares to delve into the first real stage of Zack’s torture: Forty hours of ABA therapy a week.

The Ugliness of ABA:

If the fact the Ellenby needed to pay $80,000 dollars a year for ABA is not enough to convince one of its lack of ethics, then perhaps her methods of recruitment will. Using the privilege of her husband’s strong income, Ellenby undermines poorer parents, stealing the most promising students out from under them. The first evidence of her willingness to ruthlessly exploit her own son to get her way appears during this tumultuous battle:

I wonder whether it's exploitive to affix a photo of Zack's gorgeous face to the flyer. But I'm not playing games here. My son's brain is at stake. The position for hire is not a babysitter but a dedicated technician charged with the most intricate rewiring. My flyer must stand out, I must employ whatever advantages are at my disposal. So Zack's face is in.

Due to my particular situation, I’ve never had ABA myself—though society’s reaction to my own autism gave me a bit of a taste. Even so, I was shocked by what I read. If you’ve never experienced ABA or a detailed description of it, then it’s true ugliness is hard to imagine.

Certain behaviors will not be tolerated. Cara grabs a flashcard and mimics a characteristic autistic habit of hand-flapping, then rocks her body back and forth in the chair; these are examples of behavior that contaminate answers. If Zack is instructed to "touch red" and does so accurately, his answer is nonetheless incorrect if his hand flaps on the way down to red.

As an autistic person myself, as someone who knows why we do the things we do, it’s easy to see from this description how and why ABA is abusive and tends to lead to PTSD. For example, flapping is—not always but frequently—a sign of happiness or excitement. It’s all too easy to imagine Zack flapping his way towards the right answer, thrilled that he has understood what is being asked of him—only to be inexplicably told that he is somehow wrong. Meanwhile, rocking is usually a stim meant to comfort nerves, anxiety, or fear. Zack’s ability to express his discomfort is driven out, labeled as wrong, leaving him forced to try to express himself in ways he does not really understand.

Forty hours a week is a full time job, and it takes its toll on Ellenby and Zack. Zack knows
almost nothing else of life, and the wear on Ellenby causes her abusive side to rear its ugly head.

On a day when a therapist does not show up, Ellenby, convinced that missing even five minutes will doom her son forever, takes it upon herself to administer the therapy. Zack protests desperately—almost as if he fears connecting his mother with the torture he experiences every day. Once again, while trying to convince Zack to kick a ball, Ellenby erupts into physical violence:

Angrily, I reach over and aggressively seize his little calf with both hands hard, force them into forward swinging motion [sic]. My grasp is too angry, too tight.

As she screams in his face to kick the ball, Zack’s terror reaches its peak and he lashes out physically in return:

He’s never hit me before. This is not recalcitrance but desperation. Only way to make his voice heard is by physical delivery to Mommy—his one true love egregiously violating his boundaries.

As you can see, Ellenby already knows that her violence is a terrifying violation for Zack—but this will not stop her from relying on physical force in the future.

As Zack’s compliance grows, his mother develops a feeling of increasing success. But it seems to me that Zack’s so-called improvements are nothing more than a Pavlovian response to bribes of his favorite things—such as vanilla ice cream—rather than the normalization his mother hopes for.
ABA has taught Zack how to say “I want,” how to point at the items used to bribe him, but not much else. Ellenby complains that phrases such as “Can I have?” or “May I?” now seem beyond him. But what I notice is that ABA has given him no words for “I don’t want” or “No” or “Stop, this is hurting me.” He has only been taught how to comply, and Ellenby fears he is backsliding. In truth, his Pavlovian responses are wearing off as he grows sick of bribes of Doritos and ice cream. Now age four, Zack has been undergoing this full-time torture for two years, and his parents lock him in his room at night.

In a change that feels like it’s lacking veracity, Ellenby suddenly begins growing concerned about the effect ABA is having on her son, feeling “like ABA is dedicated to drumming out every last bit of natural impulse and self-expression. It's a systematic annihilation of all that is intimate and personalized to the child in the pursuit of the end game of assimilation." Speaking suspiciously like an autistic self-advocate, she proclaims:

Something is rising inside me, a feeling of profound injustice toward my son by forcing him to abnegate every ritual that uniquely defines or comforts him, even when the behavior is not harmful or distracting.

My own frustration grows. Despite her words, Ellenby still lacks an understanding of the differences between tantrums and over-stimulation meltdowns. And she continues to subject Zack to ABA, even after learning more about the originator, Ivar Lovaas—such as that his original results have never been duplicated, and that he used methods such as hitting children

To cover the extended narrative of the next years, of Ellenby oscillating between her supposed love for Zack and complaints of how he ruins everything, of outing him to other parents at school, and putting him through more hours of ABA, would require a much longer review. For myself, the chapters Moments of Clarity and The Eclipse, were the worst of these. In them, Ellenby details Zack’s reaction to her new daughter, the way he lashes out in awareness that his mother prefers the new child over him:

I will terrify him into obedience if that’s what it takes to keep her safe, knowing that the more protective my reflexes are towards her, the more loudly I scream at him, the more he will believe I prefer her. With every verbal laceration I validate his deepest fears—that he’s been replaced.

Clearly, Ellenby can understand what her son is feeling. She simply chooses to ignore it.

Even when Ellenby finally accepts that Zack will never be the perfect neurotypical child she’s dreamed of, she continues with the ABA. But now she has also decided, in a bid to force him past his meltdowns—still termed tantrums—that she will take matters into her own hands.

My methods will be unorthodox and, to outward appearances, ruthless. Given Zack's furious protest against remaining in places he fears, I will need to physically restrain him--sit on him, hold him down while he is writhing and screaming.

Ellenby’s Autistic Angel

We now return to the WaPo article. Ellenby and her publisher have maintained that judging her based on the article is unfair, because it’s been redacted and taken out of context. However, in context and unredated, it’s even worse. First of all, Ellenby still refuses to make any effort to prepare Zack ahead of time:

Keith slowly withdraws the key from the ignition, opens the car doors and leads a bounding and unsuspecting Zack into the sundrenched parking lot outside the massive concert auditorium.

Understand that most autistics hate surprises. Even good ones can be intensely distressing.

There is also more physical violence against Zack than in the WaPo article:

I pivot back, grabbing his skull in my right curled arm grip, and begin dragging him towards that plush curtain, dragging and scraping across the sludge of soda, popcorn and stickiness that coats the floor and now both of us.

Despite what the version in the WaPo article would have you believe, a lot more people protested her behavior—until she unleashed the word “autism” and the crowd subsided into what Ellenby calls compassion and what I call ignoring child abuse. Worse, the WaPo article fails to mention that her husband Keith is there, an unwilling participant who nonetheless allows the abuse of his son to continue. He hides in the crowd, pretending he doesn’t know her, until she manages to drag Zack before Elmo and declare victory. Then he decides she’s a genius.

Ellenby insists that these are “autistic phobias” but even if they were phobias rather than overstimulation, exposure therapy without consent is unethical and abusive. Moreover, restraining someone without proper training can lead to injury and even death. But now that she has tasted victory once, she will not be turned from her violent path.

Thus she exposes Zack to more locations, using her new tactics each time. She also outs him every single time he starts to behave even remotely oddly, telling onlookers that he is autistic. She goes so far as to have a Q&A with his first grade class, and when one of them asks if Zack will ever be “normal” she tells them no. It could have been a perfect teaching moment—a chance to tell children that everyone has their own normal, to perhaps even teach them true understanding of being different from others—I can’t say I’m surprised Ellenby handled it the way she did.

As she and Zack go on various adventures to waterparks and Disney Land, the real point of the earlier narrative is revealed: Look how Zack, the autistic angel, has changed Ellenby, made her a better person. The breakdown into this narrative is complete as Ellenby declares:

I have come to embrace the unconventionality of autism, as well as its authenticity and total lack of pretense, even the enormous challenge itself.

Ellenby considers “people with autism, and those who care for them, to be the noblest, most intriguing and industrious people walking the planet.” No, Ellenby, we are merely people, just like anyone else. We did not float down from heaven to make you a better person; we exist in our own right and deserve to be treated like anyone else. Zack did not deserve to have his entire life exposed, every sordid detail, for the world to see, just so Ellenby could paint a picture of little autistic angels here to inspire the masses.

Ellenby chose to expose Zack for her own gain, and it’s working. People are willing to excuse her because of Zack’s autism, but I’m not. What she has done to him is unquestionably child abuse; her words speak for themselves. No change of heart or pretty words can exonerate her. Nor is anyone required to forgive her, though the only person who truly can is Zack.

REVIEW:

*I received an ARC from the publisher via Netgalley in exchange for an honest review.

First, I need to say something, I’m appalled that any publisher would send an ARC out that was so poorly formatted. I read a LOT of ARCs and I work in publishing, and this one was by far the worst. Some pages were almost illegible, so much so that I often wondered if they’d paid a drunken baboon to type and format it up for them. It wasn’t just me either, I spoke to others reading it and they said the same thing.

I’m not going to share the blurb, as usual with these crappy woe-is-me-my-kid-has-autism stories, they sound so much better than they are.

This book is shit!

The author claims to be an expert on autism, but she can’t recognize autism enough to realize that she’s VERY LIKELY autistic herself. It comes through in EVERYTHING in this book.

She uses all the wrong language, that if she ACTUALLY knew anything about autistics, she’d know was the wrong language. Most of which OFFENDS US!

She’s MASSIVELY abusive to her autistic son in SO MANY WAYS. She’s abusive to the autistic community, painting us all as either savants or idiots or poor, disabled, unfortunate souls.

This is just as bad, if not worse than the Washington post article painted it is.

There is nothing redeemable about this book, and if I could give it a .01 star? I would.

I live-tweeted the book, and you can read it, if you have the stomach for it, here.

https://twitter.com/KaelanRhy/status/969089091051569152

As for me? I loathe this author, I loathe the publisher and I loathe every single person who claims this book is good or praises it in any way.

NONE of them know what it’s like to be autistic, even if Whitney is? She’s so immured up Auti$m $peaks a$$ she has no idea her right from her left.

I’m offended that I even had the inkling of the thought that this book might be different.

She claims in the text that she didn’t want to write yet another ‘autism parent’ book.

She failed. BOY did she ever fail. The only thing she did better? Was to insult the very people she’s writing about and offer graphic proof that she’s an abuser.

No. NO. NO!

Content and trigger warnings on MASSIVE physical abuse, mental abuse, emotional abuse and horrible selfishness.

I want this tradition of these ‘autism martyr parent’ books to DIE.

I want publishing to do better by their autistic readers. There are SO MANY OF US!

And while I hate to excoriate a new author, this is not the kind of book one should share. She’d actually be a talented author if she turned to fiction, or even learned just a LITTLE from actual autistic adults, she has voice, but she should NOT be writing about this.

Autism Uncensored is a candid, honest, sometimes confronting, but very necessary book written by the mother of a little boy diagnosed with autism. This is an important book to read, not only for other parents of children with autism, but for the community at large and particularly for professionals working with people on the autism spectrum. This book contains so many essential insights and messages. For me, the key message is that parents know their children better than anyone else does. 'Expert' opinions regarding how to 'manage' autism should be heard and considered, but most crucial, is that parents should listen to their hearts and to what their children are showing or telling them. This will inform parents and professionals alike as to the best path to take in supporting each individual child. Highly recommended. Thanks to Koehler Books and NetGalley for the ARC.

3 stars it all I could give this book.
I know so many moms who children struggle with Autism and I wanted to know more to help and better understand what they are going though. This book fell short. The author knowledge didn't seem to be anymore than the average person.
The Author uses labels that doctors do not use when talking about Autism. She lack empathy though this book for her own son. She uses words that would bring anyone down not just children with Autism but any mental health issues. The one word that stood out was Defeated.

Thank you to netgalley and the publisher for the advance copy.

I loved, loved, loved this book. What a great read. Whitney Ellenby writes of the journey undertaken by her and her husband after learning that their son is autistic. First of all, let me say how lucky that little boy is to have such amazing and supportive parents. They are fortunate enough to have the financial resources to truly give their son the astoundingly expensive support he needs. They're loving, compassionate and fully devoted to him. They have a strong marriage to withstand the enormous pressure and stress. I was moved by her husband's total acceptance of their son as completely perfect just as he is. I was very impressed by Ms.Ellenby's dedication to broadening her son's world as much as possible even at the expense of enduring public censure and humiliation.
Highly recommended!
My thanks to NetGalley for providing me with an eARC in exchange for my honest review.

As a father of a daughter with autism, I found this title particularly refreshing in that there is no sugar coating the situation. These are the feelings we as parents all go through. Tremendous guilt and fear, but in the end acceptance and full of hope for the future. Excellent book.

This book gives an uncensored look into the life of a mother's dealing with the diagnosis and treatment of her son with autism. 

First, let me say THANK YOU WHITNEY ELLENBY for writing this book. I work as a therapist providing play-based therapy to children on the autism spectrum. There are no tables in my work, no 40 hour a week minimums. Only floors and toys and the majority of the time, fun. Stimming is akin to breathing for those on the spectrum, so usually it is worked around, not stopped. I am so thankful that this book allows for a glimpse into the life of a parent dealing with a diagnosis and treatment.. I get an uncensored peek into lives similar on a daily basis, but I feel as though this book gives me a better perspective on how the families could be feeling and what they could be thinking, but do not feel comfortable divulging. I feel like this insight will allow me to better serve my families, but most importantly, my kiddos. This mother decided to take a real-world approach to helping her son function in his world, and I must applaud her. 

Thank you for this uncensored glimpse into your life, as well as your sons. I loved this book! Thank you to the publisher, the author and Netgalley for allowing me to read this book as an ARC.