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AUTISM UNCENSORED: Pulling Back the Curtain
“And when in the grips of a public tantrum, amidst the horror and humiliation of him shrieking and splayed out on the floor while strangers recoiled in shock, my mind lurched towards an inescapable truth—that I want out from this nightmare. I want out from this child.”
So begins the turbulent ride of one parent’s decision, crafted in despair and desperation, to abandon traditional interventions for her autistic son in favor of a “hands on” approach of repeatedly exposing her son to real-world settings. Autism Uncensored is an unrestricted portal into the mind of someone who had no intention of sacrificing her career or life for Autism, unaware of the many ways it would irreversibly redefine both. As she clarifies at the outset, “this is not the story of a miraculous breakthrough or recovery,” Zack is still very much autistic and always will be. It is instead the true, real-time account of her decision to allow Zack to indulge in the very behaviors that formal therapies sought to extinguish, to disclose Zack’s diagnosis in public settings, and to repeatedly expose him to real-world situations and override his tantrums regardless of public ridicule or scorn.
Autism Uncensored goes where no other book dares—revealing the private disgrace and self-blame about having a “defective” child; the near disintegration of marriage; the failure of the traditional behavioral interventions; and the mercenary way in which service providers prey on parents’ desperation for a cure. It is a personal manifesto about how a socially integrated life is attainable regardless of whether a child overcomes the major limitations of Autism, sparking a new conversation which goes beyond simply accepting persons with Autism for who they are, but considers pushing them beyond their comfort zones to learn who they are capable of becoming. An unstoppable ride with jolting twists and turns, Autism Uncensored will leave you exhilarated, informed and still gasping for air.
346 pages, Kindle Edition
Published April 15, 2018
12 people are currently reading
39 people want to read
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Displaying 1 - 25 of 25 reviews
March 3, 2018
REVIEW:
*I received an ARC from the publisher via Netgalley in exchange for an honest review.
Content warning ableist language as self-labeling and examples of how people think of autistics.
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.
So I'm not sure what people should expect from the published version, I certainly wouldn't get my hopes up.
Now to the book content.
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 terrible!
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.
How ANYONE could read this book and NOT be calling protective services on this woman is beyond me. That it got as far as ARC status is absolutely appalling.
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/...
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. SO SO MUCH PROOF in SO MANY WAYS that she's abusive.
No. NO. NO! Just... no. YUCK.
Content and trigger warnings on MASSIVE physical abuse, mental abuse, emotional abuse and horrible selfishness.
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.
*I received an ARC from the publisher via Netgalley in exchange for an honest review.
Content warning ableist language as self-labeling and examples of how people think of autistics.
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.
So I'm not sure what people should expect from the published version, I certainly wouldn't get my hopes up.
Now to the book content.
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 terrible!
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.
How ANYONE could read this book and NOT be calling protective services on this woman is beyond me. That it got as far as ARC status is absolutely appalling.
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/...
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. SO SO MUCH PROOF in SO MANY WAYS that she's abusive.
No. NO. NO! Just... no. YUCK.
Content and trigger warnings on MASSIVE physical abuse, mental abuse, emotional abuse and horrible selfishness.
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.
April 7, 2018
This is what "autism awareness" does.
A fear mindset becomes a control mindset.
Control becomes abuse.
If nothing else, this book demonstrates just how much abusers can get away with when their victims are marginalized. This is what happens when people are taught to hate and fear their own children, when autism is framed as an enemy to be "battled," combatted," "defeated." The alienation this creates between parent and child is profound. The harm being done to autistic children is likewise profound.
This woman failed to see her son as fully human and it destroyed her humanity.
He'll have to live with this trauma for the rest of his life.
So who is the real monster?
It's time to start challenging dehumanizing narratives. It's time to have a real conversation about child abuse. In particular, the culturally sanctioned abuse of disabled children (and adults).
Abuse isn't "love." Abuse is abuse. Children should be safe in their own homes.
A fear mindset becomes a control mindset.
Control becomes abuse.
If nothing else, this book demonstrates just how much abusers can get away with when their victims are marginalized. This is what happens when people are taught to hate and fear their own children, when autism is framed as an enemy to be "battled," combatted," "defeated." The alienation this creates between parent and child is profound. The harm being done to autistic children is likewise profound.
This woman failed to see her son as fully human and it destroyed her humanity.
He'll have to live with this trauma for the rest of his life.
So who is the real monster?
It's time to start challenging dehumanizing narratives. It's time to have a real conversation about child abuse. In particular, the culturally sanctioned abuse of disabled children (and adults).
Abuse isn't "love." Abuse is abuse. Children should be safe in their own homes.
March 5, 2018
Child Abuse Uncensored
May 1, 2018
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.
(You can read about this horrific book in even more detail in my live tweeting of my reading of it.)
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.
(You can read about this horrific book in even more detail in my live tweeting of my reading of it.)
March 25, 2018
Not my words, the words of a fellow Autistic, Max Sparrow:
"Ellenby has said no one should speak badly about her book unless they’d read every word. Well, I’ve done that now and I feel soiled and deflated. Demanding that Autistics who are upset by one bite of her book must go on to consume the whole thing before being permitted to have an opinion is the demand of a bully who knows they are requiring vulnerable people to traumatize themselves with her words."
"Ellenby has said no one should speak badly about her book unless they’d read every word. Well, I’ve done that now and I feel soiled and deflated. Demanding that Autistics who are upset by one bite of her book must go on to consume the whole thing before being permitted to have an opinion is the demand of a bully who knows they are requiring vulnerable people to traumatize themselves with her words."
March 17, 2018
ARC copy via Netgalley.
This goes much further than To Siri with Love in terms of having horrid thoughts about your own child in print for any and everybody to read. Unflinching negativity and devastating thoughts that should really be kept private. I couldn't even begin to imagine what her son or her daughter would think reading this book later on.
The first half of the book is really hard to read.
Example quotes:
"He was special in a bad way."
"And beneath my frozen motherly facade I became lost in morbid fantasy--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."
Well intended but foolish comments came at me constantly. "A child is a blessing no matter what." Really? Even if he bites and mutilates his own flesh for no apparent reason and walks past me with the same indifference he shows a piece of furniture? "Even with all the challenges, you would never trade your child for any other?" Wouldn't I?
He's just sitting there; he doesn't even get it! He's not even a real 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 mine.
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.
It's not until the middle or so of the book that she has anything positive to bring to the table about her son's learning style. But it's marred by so much negativity and the 'me me me' mindset.. I get what she's trying to discuss near the end of the book but the early chapters are detrimental to her goal. Admitting that she forcibly made him go to certain venues was also obviously harrowing.
This goes much further than To Siri with Love in terms of having horrid thoughts about your own child in print for any and everybody to read. Unflinching negativity and devastating thoughts that should really be kept private. I couldn't even begin to imagine what her son or her daughter would think reading this book later on.
The first half of the book is really hard to read.
Example quotes:
"He was special in a bad way."
"And beneath my frozen motherly facade I became lost in morbid fantasy--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."
Well intended but foolish comments came at me constantly. "A child is a blessing no matter what." Really? Even if he bites and mutilates his own flesh for no apparent reason and walks past me with the same indifference he shows a piece of furniture? "Even with all the challenges, you would never trade your child for any other?" Wouldn't I?
He's just sitting there; he doesn't even get it! He's not even a real 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 mine.
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.
It's not until the middle or so of the book that she has anything positive to bring to the table about her son's learning style. But it's marred by so much negativity and the 'me me me' mindset.. I get what she's trying to discuss near the end of the book but the early chapters are detrimental to her goal. Admitting that she forcibly made him go to certain venues was also obviously harrowing.
April 30, 2018
Yikes! I’m not sure how this one made it through the publishing process. The author uses ableist language against her own son. This is a terrible “resource” for anyone who does not know someone who is on the spectrum. Or someone who is looking to know more.
May 22, 2019
This book brought about a mixed bag of emotions for me. I gave the book two stars for the graphic and real details outlined of what it's like to live with a person with autism. There were pages that took me back to my childhood and my struggling to understand my brother's disability. His outbursts and anger often embarrassed me to the point of not wanting to be seen in public with him. The author details her struggled with acceptance of having a son with autism. I often felt the same way she did at times. The rest of this book is trash. I could not believe what I was reading. That a mother would subject her own child, regardless of disability, to the pain and suffering this author did. It seemed like she was more interested in the attention in brought to her. She created well thought out public displays of violence towards her son and pulled them off under the guise that she was helping her son. She makes a point of announcing to anyone who will listen that her son is autistic. It made me sick to my stomach. At one point her "normal" daughter, who the author always dreamed of having, turns into a bold and outspoken character..it almost seems like revenge. I read this book, because I'm often critical of parents take their autistic children to public places even though they know full well what to expect. I wanted to read a perspective different from my own. I leave more angered towards parents who subject their children with autism to environments that cause fear, panic, and pain. This is not for the faint at heart. I will not recommend it to some of my friends who, like me, have family with autism.
This entire review has been hidden because of spoilers.
May 18, 2018
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 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.
March 12, 2018
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.
Highly recommended!
My thanks to NetGalley for providing me with an eARC in exchange for my honest review.
January 21, 2019
It was extremely helpful to read the authors background before her son was born. Learning her history, her hopes, her professional and relationship goals, all added to the validity of the book. There was a point I was almost too depressed about autism to continue reading but considering the goal was not to sugar coat autism and the experiences, it drove me forward also. I’m grateful for the authenticity as well as the ability for author to see past some of the “procedures” in order to better meet the needs of her son. It is an eye opening read for those of us who have a family member with autism but do not “live it” day-to-day. Valuable read and worth the time.
December 8, 2018
Autism Uncensored is one of the top ten best books I’ve read on autism and I have read over 300 books on this topic. I highly recommend it to every parent who has a child or children on the spectrum also teachers. The strength of this book is Whitney Ellenby’s transparency sharing her own experiences of both the beauty and ugliness of autism. I love her description of her son’s meltdowns and taking him to the theater.
Ron Sandison, founder of Spectrum Inclusion and author of Parent’s Guide to Autism: Practical Advice. Biblical Wisdom.
Ron Sandison, founder of Spectrum Inclusion and author of Parent’s Guide to Autism: Practical Advice. Biblical Wisdom.
April 19, 2022
Once I saw this on goodreads I knew I had to contribute to the negative reviews. I'd recommend this for people willing to justify child abuse as long as the child is disabled, or maybe for criminal psychologists looking to get a glimpse inside the psych of these people. Mothers like this don't speak for all the wonderful mothers of autistic children out there who treat their children like the wonders children are.
June 12, 2018
This is not the description of autism that many people are comfortable with it is this mother's experience.
January 22, 2019
First, I want to thank Whitney Ellenby and The Nonfiction Author Awards for providing me with this book so I may bring this review to you.
Warning: you will need a box of tissues handy for this book. Many times, I cried both sad and happy tears.
Autism Uncensored Pulling Back the Curtain by Whitney Ellenby is a book that every parent/relative of a child/loved one who is either living with or just been diagnosed with Autism must read! Whitney makes this a very educational read on a personal level through experiences she and her husband went through. She also discusses how these effects every aspect of your life-even marriage. There are tips and suggestions at the end of the book that she has learned along the way to help others. There is also a book referenced as well.
I really liked this cover as it stood out to me. The outline of the little boy with the red fog around him was very spot on for what Autistic kids probably feel.
I loved how there were quotes from song titles in the book. I found myself singing them instead of reading them however. Each of the lyrics pertained to the topic of the chapter in the book.
Whitney poured her heart, soul, and showed her true emotions and it showed big time. It was those scenes that sucked me even more to the book than I was already in. When she found out she was pregnant, the actual diagnosis and what was to happen after. WOW those were dramatic scenes!! Whitney you are an incredible writer!! I wanted to reach out to you and cry with you!
There was something in the book that was hard for me to read. Whitney blamed herself for giving her son Autism. That he came out of her womb so it was her fault. I was born with a congenital disorder myself called Hemidystrophy. All my life I had been thinking the same thing about my Mom. But to hear you say it and me to read it was hard to read. It wasn’t your fault as it was not my Mom’s fault. It just happened. For that I want to give you a hug for making me realize that. There is a reason Zach was born like that. He is a special little man. Who is very blessed to have a Mom like you.
I choose to read this book because in High School I had a friend with Asperger’s Disease. That is high functioning Autism. He was the smartest kid and the sweetest boy you would ever meet. I also babysat a little boy and he had a fixation on Elevators. We would watch Elevator video’s on YouTube and he could tell you anything about them. Again, the sweetest most loving kid you will ever meet with a heart of gold. Kids with this have a special place in my heart. Now Zach does too after reading this book.
Whitney moved me to tears at the end of this book. I was seriously crying. She wrote this beautiful section just for Zack and it just melted me. Then you turn the pages to amazing pictures of Zack and his beautiful family. You were able to put faces with the names. One of my favorites was on of baby Zack and his Mom Whitney where Zack is putting his little hand on her face. It was so sweet.
Warning: you will need a box of tissues handy for this book. Many times, I cried both sad and happy tears.
Autism Uncensored Pulling Back the Curtain by Whitney Ellenby is a book that every parent/relative of a child/loved one who is either living with or just been diagnosed with Autism must read! Whitney makes this a very educational read on a personal level through experiences she and her husband went through. She also discusses how these effects every aspect of your life-even marriage. There are tips and suggestions at the end of the book that she has learned along the way to help others. There is also a book referenced as well.
I really liked this cover as it stood out to me. The outline of the little boy with the red fog around him was very spot on for what Autistic kids probably feel.
I loved how there were quotes from song titles in the book. I found myself singing them instead of reading them however. Each of the lyrics pertained to the topic of the chapter in the book.
Whitney poured her heart, soul, and showed her true emotions and it showed big time. It was those scenes that sucked me even more to the book than I was already in. When she found out she was pregnant, the actual diagnosis and what was to happen after. WOW those were dramatic scenes!! Whitney you are an incredible writer!! I wanted to reach out to you and cry with you!
There was something in the book that was hard for me to read. Whitney blamed herself for giving her son Autism. That he came out of her womb so it was her fault. I was born with a congenital disorder myself called Hemidystrophy. All my life I had been thinking the same thing about my Mom. But to hear you say it and me to read it was hard to read. It wasn’t your fault as it was not my Mom’s fault. It just happened. For that I want to give you a hug for making me realize that. There is a reason Zach was born like that. He is a special little man. Who is very blessed to have a Mom like you.
I choose to read this book because in High School I had a friend with Asperger’s Disease. That is high functioning Autism. He was the smartest kid and the sweetest boy you would ever meet. I also babysat a little boy and he had a fixation on Elevators. We would watch Elevator video’s on YouTube and he could tell you anything about them. Again, the sweetest most loving kid you will ever meet with a heart of gold. Kids with this have a special place in my heart. Now Zach does too after reading this book.
Whitney moved me to tears at the end of this book. I was seriously crying. She wrote this beautiful section just for Zack and it just melted me. Then you turn the pages to amazing pictures of Zack and his beautiful family. You were able to put faces with the names. One of my favorites was on of baby Zack and his Mom Whitney where Zack is putting his little hand on her face. It was so sweet.
October 4, 2022
Objectively speaking, this is NOT a badly written book. It is engaging, this timeline is coherent (unlike other books i’ve read that share similar experiences), the descriptions are professionally written.
The contents of this book are going to be triggering for some. Throughout the whole book, the mother comes across as incredibly selfish and abusive towards her autistic child. I’m not easily scandalised by these things, but it definitely *got me* at certain points, so not recommended if you are upset by these things. Asides from the detailed descriptions of traumatic events, the part that stuck with me was when she found out that Zack most likely would still present to society as being autistic- the ABA wouldn’t “fix” him- and she said to her husband “He’s not going to make it”. Like he was dying.
When her second child was born, a NT girl, she talks about the possibility of loving that child more. That hurts to read.
It was hard to listen to at times, but she gets there in the end. She worked out that autism isn’t something you can discipline out of a child, that he isn’t broken, and that it is cruel and harsh to try and eliminate his natural behaviours to appear more normal to society. Instinctively as a mother, she knew this was wrong the whole time, and hinted to this, but finally she stopped putting him through extensive 40 hour weeks of behavioural therapy, and starting accepting her son for who he is.
It takes a while to get to this point, and while she still advocates for a “push method” (where it is encouraged to push your child out of their comfort zone, to get over initial fear factors) by the end, I think she does repent of the abuse and and trauma she put Zack through. I am yet to learn about the effectiveness of this push technique, but it’s interesting nonetheless, and whether she is right or not doesn’t affect my opinion on the book.
An element I like is the attack against the huge emphasis on language and political correctness that is upheld within the autistic community. While we should have intent not to offend anyone, it is very important to acknowledge the cyclical patterns of language that occur and how they can go from non offensive, to offensive, back to correct again. She is right in saying this should not matter as much as we’re told, as long as no malice is intended. It distracts from the real issues. She does not shy from using words like “typical”, which is fine in my books.
This book is definitely going to be useful for many, especially for parents. I understand why it has received so much backlash, but I think it is raw and honest and that she is brave for sharing her experience, and shows a clear path of redemption and self-improvement.
December 14, 2018
Wow! What a book! This was an amazing trip down the lane of autism. This book pulls back the curtain on autism and gives a very good and detailed description of what it is like living day by day with a child with autism and the very real frustrations, guilt, despair and struggles involved with taking him out into the real world and trying to decide which method to try to help him.
This book is definitely uncensored and gives you a real look into the life of an educated mother who had to quit being an attorney to focus on her child and give him the best outcome she could. She describes the intense loneliness of being a mom of an autistic child and the hatred and then sometimes acceptance and support of onlookers as she tried to prepare her son for the “real world.”
This is an excellent book and a real eye-opener into the world of autism. Every child is different and the author explains this and does not pretend that this is a manual or guidebook, but wrote this book to increase awareness and encourage other families with autistic children. I would encourage everyone to read this book, whether you have an autistic child or not. It will definitely increase awareness of autism which is prevalent everywhere.
This book is definitely uncensored and gives you a real look into the life of an educated mother who had to quit being an attorney to focus on her child and give him the best outcome she could. She describes the intense loneliness of being a mom of an autistic child and the hatred and then sometimes acceptance and support of onlookers as she tried to prepare her son for the “real world.”
This is an excellent book and a real eye-opener into the world of autism. Every child is different and the author explains this and does not pretend that this is a manual or guidebook, but wrote this book to increase awareness and encourage other families with autistic children. I would encourage everyone to read this book, whether you have an autistic child or not. It will definitely increase awareness of autism which is prevalent everywhere.
May 28, 2019
Autism, Uncensored is deeply engaging; Ellenby writes in the present tense, bringing each experience to the gut. Sharing at the level of detail she does is both instructive and inspirational for those dealing not only with autism but also with rearing the “normal” child. As much as the book is about autism it is also about the narrator, following the arc of her transformation from terrified hope through resignation through developing enough confidence in her own common sense to act in a non-conforming way that ultimately was right for her family. This book is a compelling story, well told.
June 14, 2022
This is raw and real, I loved reading her Rollercoaster of motherhood from before kids, to the diagnosis to how to accepted and embraced her son. I plan to reread.
September 10, 2022
I absolutely loved this book. I found it raw, honest, funny, gut wrenching, heartbreaking, uplifting, inspiring. Highly recommended for caregivers of those on the spectrum.
August 15, 2020
I found this to be one of the best books that I’ve read about experiencing autism as a parent. I see from the other reviews that most people hated it. I can see why. There is a trend in autism circles to advocate for nuerodiversity to the extreme—even if it means alienating those who are its biggest advocates. Parents with children with autism are the biggest advocates for autism. This is true even if they were initially sad when they first received the diagnosis. I for one don’t believe that parents should be demonized for this. There is a grieving process. There is a learning curve. Everybody needs to cut each other some slack.
I loved the book. I may read it a second and third time. The author gives an uncensored version of her experience. For me, it was very liberating. I appreciate that she shared her raw experiences. Sometimes, I thought she may have over shared. But that is what makes the book all the more enjoyable.
I recommend the audiobook because it is read by the author. She is recounting stories that occurred in real life, so she is able to orally interpret the book which gives it more meaning and feeling.
If you’re one of those people who love to get offended by everything, maybe this book isn’t for you. It is not the typical my son is a superhero or this is how I cured autism book. It’s the struggle of a real woman sharing her very real emotions as she learns and comes to grips with the fact that her son is not going to be healed. She’s not going to sell you B12 injections or other nostrum. She helps you understand that there’s a mourning that occurs when your child gets a diagnosis. She shares her own particular path through that terrain. For me, and for many other readers, this helps us know that we’re not alone. If that is you, pick it up.
Be warned though, I wept for 75% of this book. I was just moved by each chapter. I don’t think I ever have cried while reading a book. I’m not a big crier. Maybe it just hit me hard because of my personal experience. But just make sure you read this book in a place where you feel comfortable to cry.
I recommend it to everyone. Even if you don’t have someone that you know living with autism. Seeing how strangers help this young boy with autism makes me believe in humanity again. So, there’s something for everybody. I don’t normally make reviews. I read a lot of books. Most of them are shitty. I may buy 100 copies and give them out to everyone I know. Buy the book. Or become my friend and you will get one at Christmas.
I loved the book. I may read it a second and third time. The author gives an uncensored version of her experience. For me, it was very liberating. I appreciate that she shared her raw experiences. Sometimes, I thought she may have over shared. But that is what makes the book all the more enjoyable.
I recommend the audiobook because it is read by the author. She is recounting stories that occurred in real life, so she is able to orally interpret the book which gives it more meaning and feeling.
If you’re one of those people who love to get offended by everything, maybe this book isn’t for you. It is not the typical my son is a superhero or this is how I cured autism book. It’s the struggle of a real woman sharing her very real emotions as she learns and comes to grips with the fact that her son is not going to be healed. She’s not going to sell you B12 injections or other nostrum. She helps you understand that there’s a mourning that occurs when your child gets a diagnosis. She shares her own particular path through that terrain. For me, and for many other readers, this helps us know that we’re not alone. If that is you, pick it up.
Be warned though, I wept for 75% of this book. I was just moved by each chapter. I don’t think I ever have cried while reading a book. I’m not a big crier. Maybe it just hit me hard because of my personal experience. But just make sure you read this book in a place where you feel comfortable to cry.
I recommend it to everyone. Even if you don’t have someone that you know living with autism. Seeing how strangers help this young boy with autism makes me believe in humanity again. So, there’s something for everybody. I don’t normally make reviews. I read a lot of books. Most of them are shitty. I may buy 100 copies and give them out to everyone I know. Buy the book. Or become my friend and you will get one at Christmas.
June 30, 2024
Autism Spectrum has morphed into a series of doors one has to enter, gain more knowledge and move on. This author did her very best with the tools she was given. It’s not like she didn’t do her homework by researching everything and everyone and had to find out the hard way what worked and what doesn’t.
If the Autism community would help parents with Best Practices from a meta-analysis, that would help. It appeared that in this author’s story, there are so many charlatans.
In addition to Best Practices list from a met-analysis, what about a list of places where best practices are in place already.
If the Autism community would help parents with Best Practices from a meta-analysis, that would help. It appeared that in this author’s story, there are so many charlatans.
In addition to Best Practices list from a met-analysis, what about a list of places where best practices are in place already.
June 19, 2018
A brutally honest story
Whitney tells the story of raising her autistic child as if she was just living it—the fear and heartbreak of learning what her son faced, the trials of trying to help him to overcome it, and the joy and acceptance once she realized that he would not.
It is a hard story. If you are starting down the journey of raising an autistic child, read the last few chapters first. The story ends well and Whitney has created a wonderful group that creates a safe space for all of us with special kids.
Whitney tells the story of raising her autistic child as if she was just living it—the fear and heartbreak of learning what her son faced, the trials of trying to help him to overcome it, and the joy and acceptance once she realized that he would not.
It is a hard story. If you are starting down the journey of raising an autistic child, read the last few chapters first. The story ends well and Whitney has created a wonderful group that creates a safe space for all of us with special kids.
March 31, 2019
Thank you for your strength
I am a parent with twins that are on the spectrum and can identify with the journey. I started out with blame and still have it every now and then but slowly realizing it doesn't serve myself or my children. Your story inspires me to not look at my children as just disabled but as people.
I am a parent with twins that are on the spectrum and can identify with the journey. I started out with blame and still have it every now and then but slowly realizing it doesn't serve myself or my children. Your story inspires me to not look at my children as just disabled but as people.
April 21, 2018
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.
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