Wednesday, March 21, 2018

Autism Uncensored: A Dangerous and Spirit-Crushing Book

Photo © Charley Lhasa | Flickr/Creative Commons
[image: Plush red Elmo doll lying on asphalt.
A yellow chalk speech bubble has Elmo appear to be yelling "Help!"]
Maxfield Sparrow

[Content note: Extensive discussion of restraints. Discussions of gaslighting, denying Autistic autonomy and competence, child abuse, autism profiteering, and similar goblins. Discussion of the 1960s medical view of autism as it continues to occur today.]

You may have seen the recent Washington Post article titled “Bystanders were horrified. But my son has autism and I was desperate,” an excerpt from Whitney Ellenby’s new book, Autism Uncensored: Pulling Back the Curtain. True to the exposé tone of the title, Ellenby describes in livid detail the day she wrestled her panicked son, Zack, by clamping his 50 pound frame tightly between her thighs and locking her feet together. The two spent over half an hour in combat as Ellenby dragged him inch by inch toward the red curtain beyond which the Sesame Street puppet Elmo was performing. Zack’s piercing shrieks alarmed onlookers who screamed at Ellenby to stop, threw an iced drink on her, and spat on her.

When the venue attempted to kick Ellenby and Zack out for causing a disturbance, she told them the ADA (Americans With Disabilities Act) gave Zack the right to reasonable accommodations to access public venues, and she was Zack’s accommodation.

I learned from reading her forthcoming book that Ellenby began her career as an ADA lawyer. She had a dream of fighting the huge battles. I’m picturing her mind set on something like a cross between Spencer Tracy in Inherit the Wind, and Gregory Peck in To Kill a Mockingbird. She went into ADA law starry-eyed about all the great work she would do, but became frustrated when the bulk of her work turned out to be things like getting down on all fours to measure doorways and stalls to see if they were up to code. That didn’t feel important enough to her, so she switched to a boutique adoption firm. Then she became pregnant with Zack, and thought she would take a little time off to give birth but soon be right back in the thick of things at work.

The first half of Autism Uncensored is a brutal description of how angry and bitter Ellenby became at her son, Zack, when he turned out to be autistic. Ellenby feels like giving birth to Zack was some kind of punishment for her sins, and expresses that belief through declarations like, “After weeks of being entombed by numbness, my heart is finally giving way to the realization that I’m being justly punished.”  “Zack’s autism is collateral damage for a life poorly lived. I just never imagined the punishment for my bad deeds would be inflicted on my innocent child, or be so brutal, so permanent.” “I’m chained to this denigrating, unpaid forced labor with no tangible reward for all my sacrifice.” “I will be incarcerated and tied to him for the rest of my life, a prison sentence” “I can’t pretend this is anything but punishment. At its very worst, autism feels like a living, walking, breathing nightmare.”

The book could use a thorough editing for typos and word usage—writing “synchronicity” for “synchrony,” or “bespectacled” for “bespangled,” for example—but I don’t think the last quote of my previous paragraph was a typo. I believe the author fully intended to say “autism feels like…” because she believes that autism is not a word to describe the structure and function of her son’s brain, but rather a punishment inflicted on her. Like many martyr parents, she has co-opted her son’s identity and cast herself in the role of victim. Autism is not a neurotype; autism is what was done to her. And in between sessions with her hair shirt, she makes it clear that she thinks she is better than this: “I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”

Sometimes her concept of autism is as a separate beast, something outside and inhuman: “Autism is angry. The infuriated beast of defiance is rearing its head, snarling, writhing, biting, only I’m not trying to defeat the beast or even subdue it. I need its passion and power. It’s this very passion that fuels the resistance with which I must align myself, harnessing and channeling that live energy.”

I have heard people defend the phrase “combat autism” by saying that they love their child and hate autism. When the average person says they’re fighting autism, it feels bad to me but I try not to say too much because I’d rather win hearts and minds, than be too direct and alienate anyone I might otherwise have influenced. But when Whitney Ellenby was fighting autism, it was very much not a case of “love the child; hate the autism.” When Ellenby writes about fighting autism, she is talking about fighting Zack. 

Ellenby wrote very clearly about hating Zack, and she used the kind of language I’m not used to seeing outside medical books from 40 and 50 years ago. “He’s not even a boy really, but the shell of a boy, an exquisite cutout of a child with no actual stuffing. He is damaged ... deformed ... disgraced. And his disgrace is my own. This is what my glorious womb has produced, a profoundly dysfunctional child.”

The author tells us that she has intentionally chosen to use the present tense when writing her history with Zack as if everything were happening in the moment in order to achieve maximum emotional impact. She succeeded in that aim; her book is harrowing. I felt clobbered reading the first half of Autism Uncensored. After enough clobbering, I just felt numb and empty.

The second half of the book starts when Ellenby’s daughter Cassie is born. Cassie is not autistic, and at first Ellenby loves her more than Zack because she is typical. “Cassie exhibits everything Zack did not, and more. I feel truly appreciated, indispensable, valued. I’m not just smitten but truly grateful to my daughter for allowing me finally to know true reciprocal joy and interdependence. So this is why so many parents describe newborns as transformative, revolutionary and all-encompassing. Now I get it. Now I can’t pretend that I don’t.” Zack clearly sees the overwhelming favoritism going on and in a panic about his own survival he does things to hurt the baby.

Ellenby complains about all the extra work of policing Zack while taking care of Cassie. She wishes she could get rid of Zack and start fresh with Cassie and forget she ever had a child who wasn’t normal. “I cannot see a way out or how will it [sic] ever subside in the face of such obvious, lasting discrepancies between my two children. I’ve never been one to repress my fantasies, the theme of which are now overwhelmingly versions of 'starting over.'” “What if Keith and I could start over with just her and then have just one more typical child? Now that we know it’s reproductively possible, the notion is intoxicating, the vision of Cassie as the older sibling to another adorable healthy baby, rounding out the family to the four I’d originally envisioned, before all hell broke loose.”

Ellenby realizes she’s sharing a horrifying thought and tells the reader “no one who hasn’t walked in my shoes gets to judge me.” She reasons that it’s natural for her to feel this way after everything she has endured from Zack. But around 60% into the book, Ellenby’s affections for her children suffers a sea-change. The catalyst? Cassie starts talking. Now Cassie uses logic to resist doing what Ellenby wants her to do. Cassie treats her mother to streams of insults: “From now until forever, I’m going to be friends with everyone except you!” “And I don’t even like the way you dress! And you try, but you are not even funny!” “And you know what? Daddy is SO much more funner than you! And he’s a better cook, and he’s better at video games, and he looks better in his clothes than you do in yours.”

Ellenby can’t stand it and begins to hate her daughter, opening up room to love her son as she uses the ambiguity of his silence to layer dehumanizing mystical interpretations of autism onto him. “Unbelievably, the scales of enjoyment between my two children are tipping in a direction I had not thought possible.” She begins to really appreciate Zack’s silence. “Zack’s own economy of words works to our mutual advantage—I talk too much, he too little. Somewhere between us lies a normal amount of speech.” From this point on, she always writes about Zack with a stereotypical new age-y praise of his innocence and higher spiritual nature.

Around the same time, she starts noticing that people will be overwhelmingly supportive and helpful when she makes a public announcement about Zack’s autism. People on the train provide an endless supply of tissues and plastic bags when Zack soils himself unexpectedly and Ellenby announces it’s due to autism. Gang members at a water park band up to protect and assist Zack on the giant water slide after she gives an impromptu speech about Zack’s autism on the steps of the water slide. Ellenby wrote in the first half of the book that she was Zack’s accommodation and he “rides” her. By the second half of the book it is becoming clear that she is riding Zack, using his autism for a social payout to herself.

Ellenby describes a turning point at which I sense she first began to realize she could commodify Zack’s autism for money, social status, or both. Ellenby stages another wrestling match with Zack, this one to get him inside a movie theater to see Happy Feet. This time, instead of springing the performance on an unsuspecting and captive audience, Ellenby goes into the theater alone first to announce that she will be dragging Zack in during the previews and that he’s got autism and this is part of his exposure therapy.

The theater-goers silently watched Ellenby drag her son into the theater—kicking, clawing, biting, shrieking—and then, “A few members actually kneel to give me strong hugs; others pointedly ask me for my business card so I can work with their disabled children, cousins, grandchildren. Once again history has been made in the life of my child. Savor it.”

Ellenby ends her book by telling us about her business and all the good it is doing in the world of autism. The book reads like a business card. It’s the kind of book meant to drum up more business and I think it will be highly successful in that regard. And I think that’s a horrible state of affairs.

Ellenby began dragging her son places after she felt Zack was not making enough progress on ABA therapy. She decided mother knows best and began her own program of forcibly dragging him places he didn’t want to go so he could see for himself that it wasn’t so bad once he got there. The author spends a few pages of her book enumerating the flaws of ABA and, for a moment, I agree with her:

“A flat prohibition against certain behaviors wipes out a panoply of ritualistic comforts for an entire population, some of whom may very well depend on them to function at all. And if we suffocate those adaptive behaviors, even when the child is learning, are we not teaching the child to be ashamed of his own natural impulses, telling him his are disfavored or deviant? And would we do the same to typically developing children, or to ourselves as adults?”

“But something even more sinister is going on here: we are undermining Zack’s autonomy and sense of self-worth. ABA protocol is literally robbing Zack of independence and bodily choices, because we are making them for him.” Yet what is Ellenby’s Tackle and Drag Therapy but a super-intense experience for Zack of completely losing his autonomy and bodily choice?

Ellenby felt like a small fish in a big pond as an attorney; making her life about autism makes her feel like a much bigger fish. Again, she co-opts Zack’s identity to fill her ego needs: “I am autism and it is me; I live and breathe it, fully intoxicated: it’s in my marrow. And most unexpectedly, it gives me profound joy and sense of purpose to acknowledge it. It doesn’t matter that I was trained to be an attorney. I’m meant to be something more feral, more hands-on, more intimate and immediate. After a decade spent wandering the wilderness as a little attorney lost, possessing raging zeal with no clearly identifiable group to ignite it, I have come home.”

Ellenby admits she’s not even got the proper training to safely restrain a child. With her attorney instinct, she makes sure to tell people not to do what she did. Yet she uses such scientific phrasing when she describes her “experiments” and writes about her perception of the success in such glowing terms many vulnerable parents will do exactly what she describes, as closely as possible to the way Ellenby did with Zack in search of some magic outcome.

And for all Ellenby’s criticism of ABA in her book, when I Googled her business I found that it’s based on an ABA model. And in her Washington Post article, Ellenby admits that what she is doing with her Tackle and Drag therapy is exactly what ABA therapists do if the 40-hour work week of ABA therapy isn’t making a dent in a child’s behavior. She told Zack’s doctor about the Elmo show, after the fact, and he explained that: “as a last resort, in a controlled way and only after years of therapy, a licensed behavioral clinician might have physically restrained Zack to force him to confront his fears, had he not responded to more gradual methods.”

As Sid Ziff once quipped, this is not a book to be lightly thrown aside; it should be thrown with great force. But it is in the midst of being published and the publisher has defended the author, using some particularly nasty rhetoric against Autistic people who don’t like the book. It will be published.

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.

While Ellenby has, perhaps unwittingly, exposed a lot of the ugliness and unsuitability of ABA, she embraces the behavioral paradigm still and enacts the very worst versions of it. Autism Uncensored is a traumatic read and should be resisted as much as possible. I’ve read it for you and saved you the trouble and trauma. Instead of this revolting mess, I suggest you read the following:

Respectfully Connected


"Authors of this blog come from a wide range of backgrounds and between them have an enormous amount of parenting experience. They all share a desire to parent in a way that both models and facilitates respect and connection, and that values all kinds of diversity. The authors of this blog also share the experience of being part of neurodivergent families."

"This blog exists to share the authors stories, with the hope they will empower and encourage other parents on their journey with the knowledge that there is a gentler, more compassionate way of raising autistic children than much of society tells us, and that close attached relationships are very possible."

We Are Like Your Child


“We Are Like Your Child [is] a collaboration of Autistic (& occasionally, other disabled) adults. We discuss our difficulties & how we work with or around them from a neurodiversity & social model of disability perspective.”

WALYC was organized in response to the many parents who refuse to listen to what Autistic adults have to say about the lived experience of autism, telling us that we can’t possibly have any useful insight or advice because we’re “not like their child.” But you can’t compare an adult to a child and the members of WALYC often discuss challenges many people’s children of all ages face, along with strategies for circumventing or overcoming those challenges.

The Thinking Person’s Guide to Autism

Oh, wait, that’s where you are right now, reading this. Well keep reading TPGA! There is so much collected wisdom here from Autistics, parents, therapists, and more that it would take a shelf of textbooks to hold it all (and the valuable content continues to grow.)

These three sites alone will keep you very busy reading and learning things that will actually help you and your child. Reject Ellenby’s Tackle and Drag therapy and anything that comes from Dr. Lovaas and his ABA practices. Boycott Autism Uncensored and tell everyone why Autistics deserve better.

Saturday, March 10, 2018

How to Use Visual Schedules to Prevent Accidental Gaslighting


(Content note: This post mentions ABA briefly, and gives a detailed example of an autistic child being exposed to gaslighting.)

I’m an autistic parent to an autistic child. After I tweeted a bit about my take on autistic parenting, that made me think that I want to explain one of the benefits of using visual supports for clarifying life and create predictability.

Visual supports like picture schedules can be used in a number of ways. Sometimes people use them in ABA settings to visualize what reward the child will receive, and I want to be clear that I don’t do that. I don’t do any kind of ABA or therapy that attempts to make my kid appear allistic (non-autistic).

In my home, we use pictures and visual support to make life easier for us, as the autistic people we are. Nowadays, both my kid and I are mostly verbal but visual support is still a great way to communicate for us, for a number of reasons. One of the benefits of pictures, words written down, and color-coding is that this is the kind of information that lingers, meaning even for people like us who don’t always remember what we were thinking about a second ago (hey ADHD), the information is more accessible. Another benefit is that clear, visualized planning can prevent (unintentional) gaslighting and misunderstandings.

Now, some of you may think that since gaslighting is a horrible thing, it’s not something that happens accidentally. I wish that were true, because yes, making someone doubt themselves and their experience of reality is a truly horrible thing to do. In my experience though, adults sometimes do gaslight kids without even realizing it. Especially autistic kids. Especially if parents operate with an allistic perspective. It can go something like this:

An autistic child is being told by a parent that “tomorrow, we’re going to the beach if the weather is good.” If the weather is bad they will stay at home and play computer games. In the mind of the parent, this plan means that they will go to the beach if it’s warm and sunny.

This condition doesn’t have to be a problem, but let’s say that the parent doesn’t tell the kid about what they mean by “good weather.” Let’s say that the kid doesn’t even like sunshine because the heat is sensory hell, but loves playing on the beach on a cloudy day. The next day when they wake up, it’s cloudy and not that warm. The kid is happy, because the weather is perfect for the beach. The parent however, doesn’t want to go to the beach because it isn’t warm enough. Maybe they will disagree and fight about it. Maybe, the parent will say something like “But I told you we’re only going if the weather is nice! Why don’t you ever listen?”

A lot of people will probably agree with me that this is a misunderstanding. However, if you’re an autistic kid your sensory experiences, your interpretations of the world, and what people say are likely to always be questioned, erased, and invalidated—and then you are being blamed for it. It probably doesn’t happen only once a year, it might happen every day. Because that’s life for a lot of autistic people in an allistic-run world.

For kids, this is even worse than for adults because kids’ interpretations are often considered invalid just for coming from a kid. Having your interpretations of the world constantly invalidated day after day, year after year, is a kind of gaslighting. It might not be intentional but it’s more harmful than just misunderstandings between equals.

So how can visual supports help autistic people in these situations?

[image: Black and white pictures of a sun followed by an arrow pointing at
a symbol for beach and a picture of clouds followed by an arrow pointing at
the symbol of computer games. Images from Sclera symbols.]
Let’s say that the parent and kid in our example had made a picture schedule about this. For some people, it becomes much easier to understand an autistic way of thinking when you communicate using pictures, meaning that just putting what you want to say in pictures might close a communication gap between the parent and the kid.

But even if closing that gap doesn’t happen automatically, when the parent and kid created the schedule together, the question of what “good weather” is would hopefully had come up. Many of the parents I discuss visual supports with mention this idea, that putting your thoughts into pictures makes it more necessary to be precise and see possible interpretations beyond your own. When visualizing plans together, it can become easier to understand each other.

Hopefully, by making visualizations and realizing that you have different sensory experiences about sun and heat and therefore interpret “good weather” differently, you avoid misunderstandings and gaslighting.

[image: Black and white pictures of a sun followed by an arrow pointing
 at a symbol for computer games and clouds followed by an arrow pointing
at the symbol beach. Images from Sclera symbols.]
Now, would it be enough to visualize during what weather a visit to the beach could happen? No. If a kid experiences sensory hell from sunshine and heat, the issue won’t be solved just because there’s predictability from a picture schedule. Obviously the parent has to change their idea of what kind of weather that is beach appropriate to not put their kid in sensory hell.

Creating predictability by using visual support isn’t some kind of magic, it’s only one part of parenting an autistic kid in a respectful way.