CONTENT WARNING mention of panic attacks, abuse of autistics, mention of email harassment, ableist language as a self-label
I reviewed a harmful book by an autistic martyr parent. It’s gone viral, so you may have heard.
Here is the review, here is the twitter thread.
When this page came across my feed, the author claiming that the book itself proves she didn’t abuse her son, I was motivated, out of stupidity I guess, to reach out through her comment section to let her know I HAD read the whole book and found it even more horrifying than the WaPo article.
She emailed me, implying that I had obtained the book illegally.
In the interest of transparency, and honesty, I’m sharing all of the text I have sent to this woman, and her husband.
These are my words, so I’m allowed to share them. I would DEARLY love to share the emails both she and her husband have since sent to me, because oh my dear gods they have me in tears and a panic attack. Both last night, and again this morning.
Suffice to say that they implied I’d gotten the book illegally, that I didn’t actually read the book, that I should REREAD that travesty, that I said I knew their son better than they did.
Then I just got one from the husband claiming that *I* a confirmed autistic am OBVIOUSLY not autistic, that I am probably a Russian internet troll bent on hurting good people like them.
So. Before I go close myself in the bathroom and rock myself calm. Here is the text I sent via the author’s contact section on her website.
What I sent to Ellenby via her contact form on her website in response to her defense of the WaPo article.
Oh? I’ve read the whole book now. Your book paints you as JUST as abusive if not worse than that article described. There were times in the book that you admitted to wanting to give your son a tranquilizer, which you had on HAND to go to a birthday party.
You really need to pull that book. It’s not out yet, so you still have a chance to repair this damage before it’s totally done. It’s harmful to the autistic community and it’s incredibly harmful to your son.
People, autistic people are already reading it and being harmed by it. I’m one of them.
Parents of autistic kids are going to read it and think that’s the best way to do things!! It’s not. It’s not even CLOSE.
Please rethink the massive amount of damage you can and are doing.
You’re wrong. You are VERY wrong.
These kinds of books need to be stopped.
You said you didn’t want to write another autism parenting book, you failed so hard on that. The only thing you did better? Was to insult autistics and provide graphic accounts of abuse of the disabled.
I wish you the best of luck, I think you’re actually a rather talented author if you actually wrote something you knew anything about. You so obviously DO NOT understand autism. Not if you could write those things. You just don’t.
By the way? You read as autistic to me. Female autistics don’t show the same signs, and we’re JUST as common as male autistics. The data and research is badly skewed.
You and I aren’t far apart in age, you wouldn’t have been diagnosed at a young age any more than I was.
Please… Please pull the book. You’re doing untold amounts of harm.
I don’t want contact with you, after reading that book I don’t much like you. But I think you need to know that people HAVE read the book, and they feel JUST the same as after reading that article.
That book HURTS people. Autistic people, like your son. Like me. Like my children, like many of my friends.
It’s not going to get better.
And here is the text of the email I stupidly responded to her with. My only defense is that it riled me to have it implied that I illegally obtained a book when I got it from NetGalley and the publisher.
If someone knows if I’m legally allowed to share the text of the emails they sent me, please let me know.
With as much grace as I’m capable of showing to someone who would hurt a child as much as you have, let me explain some things as politely as I possibly can.
I received a copy of your book from NetGalley and your publicity firm. I requested it after seeing that bloody horrible article in WaPo. I’m autistic, and the mother of autistics, and I am SO SICK of autism parents writing like they have a clue about what they’re talking about, because honestly, most of you don’t. I review books like yours, HOPING one of you is going to prove me wrong. I mean, I actively HOPE one of you is a decent person. So far? None of you have been. I reviewed TO SIRI WITH LOVE and have been on Bustle and in the NY Observer because of my work on it. I imagine my words will be picked up about this book too, I’d be very surprised if they weren’t. I’m a reasonably well known autistic advocate in online circles.
I’ll attach a screenshot of the letter from your publicity group at the end of this email, since you seem to be implying I didn’t come by the book legitimately.
Look, I get it that you’re a new author. I’m not. I work in publishing, the way this works is that ARCs (Advanced Readers Copies) are put out from the publisher around a month in advance, Netgalley and Edelweiss are the most common places to ask for a copy. We reviewers can also email the publisher to ask for a copy of the book. The idea is to drum up publicity for the book, in hopes that the reviews will be positive. The deal is that we reviewers provide an HONEST review, which frankly you aren’t going to like because it’s not favorable, in exchange for a free copy of the book.
Now, using your own methods… (Note, she numbered her demands that I provide quotes from her own book, I don’t know why, to prove I’d actually read it maybe?)
1) Do not talk down to me, I’m autistic, I’m not stupid.
2) I’m not wading through that filth you call a book again to get you exact quotes. It’s bad enough I actually read the whole thing once, I will certainly never reread it. And if you doubt I did? I invite you to take a look at my live-tweeting of it. https://twitter.com/KaelanRhy/status/969089091051569152
I’ve quoted you there. A lot. Properly, as I am actually allowed to quote words from books as long as I source the book/author. I’ve also given my educated, and sometimes salty opinion of what I thought of your words. Since you seem to need a reminder of the words YOU actually wrote… It was right before the birthday party, you said something along the lines of seriously considering giving Zack a sliver of tranquilizer before the party. You said you’d given it to him several times before and it had relaxed him.
3) I have no issue with autistics using anti-anxieties, nor allistics for that matter. If the doc prescribed them to Zack, then maybe he needed them. I don’t honestly know, nor do I really care. How you can possibly think I’m insulting my own people by being upset that you threatened to drug your son into compliance for a birthday party is beyond me. Honestly, that’s how it read. It really did. I’m not the only person to have thought so. There are currently at least two other autistics I know of reading and tweeting, unfavorably, about your book.
4) As far as intent goes, isn’t there something you lawyers love to say? Something to do with mens rea? I’m a historian and a teacher, not a lawyer. Intent does not equal result. The intent behind your book may have been good. I don’t know you, & don’t really want to. The result is OVERWHELMINGLY that you ARE hurting autistic people. You have hurt me. I’ve been crying, off and on for two days as I read that damned book. I’m still awake at 2 am my time, often glancing in at my children, who are both autistic, and wondering how the hell someone like you could publish those cruel and often nasty things about a child like them.
Honestly, how could you? How? Do you not see what those words will DO to your children when they read that book? If you don’t? I could tell you, but I highly doubt, from the tone of your message that you’re even close to listening to someone you deem as less intelligent and less worthy than you.
5) Stop with the PFL please. Autistics, by and large, HATE IT. It demeans us. If you knew ANYTHING about autism, you’d know that. Same as you’d know the bloody difference between a meltdown and a tantrum. They aren’t the same thing. Do you have any idea what a vibrant community we have online? I doubt it.
6) I still can’t believe, even if you don’t accept that your book will and already has harmed autistic people, that you CAN’T see how much those words will harm your son. I don’t understand that.
7) A thorough reading (she said that a thorough and accurate reading of her book would prove her point, as if I *hadn’t* done so) of your book made me throw up. It made me almost meltdown, that a person like you could be at all involved with autistic people, and are likely autistic yourself… it sends chills up my spine and makes me physically ill. It really does. I have no idea the sheer amount of harm you are doing with your ambassador’s group, and because you so badly misunderstand autism? You don’t either. I think it’s a great idea, but do you employ autistic people to help you? Do you know that our rates of unemployment are around 85% regardless of how well educated we are? Do you have any idea how close to poverty most of us live? Do you care?
8) An accurate reading of your book makes it quite clear that you hate your son and prefer your daughter. It makes it QUITE clear that you do not understand autism. For gods sake, you use PFL, refer to meltdowns as tantrums and quote crap from freaking auti$m $peaks. You seem to only understand the lies that Auti$m $peaks spouts, and people like Suskind. Do you realize that almost everyone in the autistic community thinks he’s a joke, or a fraud? There are some few allistic people who write about us that we like. It’s because they listen. He is not one of them. You will not be either if you go on to publish this book.
9) Do not besmirch my honesty or integrity. If I say I’ve read your book? I have. From page one to the very last page.
10) You can’t control how people will view your book, how they will read it, and you saying you’re sorry for how it affected me while at the same time telling me I misunderstood it smacks of so much arrogance. You really won’t get far in publishing, at least with the author side of things, with that attitude. The autistic community is HUGE online, especially on Twitter. Telling us we’re wrong for our very valid interpretation and feelings about your book? It’s really not a good look. You not being able to control how people will view your words is the risk you take as an author. I believe your intent was good, but your result failed. Badly.
11) I’m not usually the type to talk to the authors I review, I’m not even sure why I did or am. Perhaps I’m truly hoping you’ll listen and pull the book before it causes even more damage. Right this second I have autistics telling me they’re having panic attacks and flashbacks to their own abuse, just by reading my quoted words. They haven’t even read some of the worst stuff in the book! I have. THAT is the kind of harm I’m talking about. If you read my tweet threads, read the comments replying to it too.
12) Yes, you do make it clear that your harmful methods, which are absolutely abusive, are your idea alone and against medical advice. But the fact that you make it seem like they worked completely for Zack (you do realize that later in life he’s likely to suffer MASSIVE ptsd from that, right? MANY of us do) are going to have a clear result. What exactly do you think desperate parents who don’t understand autism, who believe it’s a horrible, disfiguring disability that truncates families and reduces enjoyment of life… all of the very nasty things you said in your book… what do you think they’re going to DO when they read that? They’re going to torture their kids in just the same way you tortured yours. And the outcome won’t always be as positive. So it worked for Zack. I’m happy for you both, there are OTHER better methods that your book doesn’t even mention. Those desperate families are going to harm their kids, and it WILL be your fault. It may not be legally anything to do with you, but morally? It’s on you. You can’t escape that. I think that’s probably why I said something because the book doesn’t pub for another month or so. You DO still have time to undo this. We, as authors, have a deep and abiding moral responsibility to make sure our words don’t harm anyone or cause someone to harm others. If it’s pointed out to us that they do? The right answer is to apologize and repair, if you can, the harm you’ve done. Period. I take my responsibility as an author of touchy subjects VERY seriously. It’s totally up to you how you take yours.
13) You definitely implied, if not outright claimed, that you’re an expert on Autism several times throughout your book, and no, I’m not wading through it again to find the quotations. I’m sure you’ve got a copy of it, you can do a word search yourself. You claimed to be a scientist once too. Also…did you NOT write your bio for Amazon? We authors usually provide the text for those. Here… let me cut and paste it below to make it absolutely clear that I’ve actually read it. Since you doubt my honesty so much.
Of course, you have a right to speak for yourself and share your story and your viewpoint. You also have the right and responsibility to bear the burden of the resulting harm. I just wanted you to know how very harmful I and many in the autistic community ALREADY find your book. Once it publishes? You have no control anymore. And you very likely WILL be taken to the cleaners. Diversity advocates on Twitter are ALREADY calling for it to be boycotted.
Then again, books like yours get all sorts of accolades and it took me forever to find a decent publisher for my work. I doubt that washington post will even bother to print my review or what I’ll write up to send to them about your book. I don’t have connections you see, and I’m autistic. I’m out and proud about that, so to most people, my opinion doesn’t matter. Because I’m stupid.
Books like yours don’t help that, you know.
As an aside, I can’t believe that you’re an author and not on Twitter. I really can’t believe it. The writing community on there is almost as rich and varied as the autistic one.
Now. I’m tired, I’m still hurting beyond belief at reading your book, and I’m going to try to go to sleep. I very STRONGLY urge you to pull this book. You have no idea the amount of pain you’ve already caused. I’ve pasted the promised proof below.
I think it’s best we don’t speak again.
Pasted bio from Amazon, I bolded the parts where it claims she’s an expert.
About the Author
Whitney Ellenby is a former US Department of Justice, Disability Rights attorney whose writings have been published in The Washington Post, a law review periodical, and the U.S. DOJ website. She is the author of “Divinity vs. Discrimination: Curtailing the Divine Reach of Church Authority,” Golden Gate University Law Review (1996)), as well as an amicus brief on behalf of the U.S. DOJ Disability Rights Division regarding discrimination against mobility-impaired individuals in violation of the Americans with Disabilities Act (ADA). She is the proud parent of a son with Autism and founder of “Autism Ambassadors,” a charitable venture through which she runs exclusive recreational events for over 600 families impacted by Autism in the Washington, DC/Maryland area, including a Sensory-Friendly showing of the world-famous “Gazillion Bubbles Show.” She is an expert on Autism and has testified before the Maryland Senate on disability-related issues, is a member of the Developmental Disabilities Advisory Council for Montgomery County, MD and serves on the University of Maryland Autism Spectrum Disorder Advisory Board. Whitney’s expertise is steeped in her extensive disability law background, personal experience with her own son, and over 10 years of serving children, teens and adults with Autism of all ages through her “Autism Ambassador” events. Her monthly “Ambassador events” have been featured in local t.v. news, The Washington Post, Bethesda Magazine, and The Bethesda Gazette. Whitney was most recently honored with an “Autism Awareness Proclamation” and “Community Leader” award for her advocacy and dedication to the disability community of Maryland. She has what she describes as a “healthy obsession” with all things Autism.
I then pasted a screenshot of the email I received from her publicity firm. I can’t seem to figure out, as shaken as I am, how to paste that here. I shared it with her to prove where I’d gotten her book, since she made it seem in her email that she highly doubted I’d received a legitimate copy or even read it.
I woke up this morning to a letter in my email from her husband, of all people. He was defending his wife, telling me the book was beautiful and defending their treatment of their son. This is the text I sent back to him.
The very fact that you use functioning labels means you have very little idea of what it means to be autistic. And as far as I and many other autistics are concerned? Have no business working with us. I never said that I knew Zack, in fact, I said that I didn’t. I don’t want to know any of you. I certainly do not want to see any of your names in my inbox again.
Assuming that because I type well and communicate well with words on a screen means that I cope well with all aspects of life in an allistic world again proves that you have no idea what it means to be autistic.
Was I condescending? Possibly, it wasn’t my intent, any more than it was your or your wife’s intent to harm, what, at this point, is thousands of autistics. It will be more when that book comes out. She implied that I may have gotten the book illegally. I tried, in my very blunt, autistic way, to explain how this business works.
Were your actions and inactions abusive to your son? They certainly read that way. Not just to me, but to the thousands of other autistics who have read my review threads, to obviously, given the defensive tone on your wife’s website MANY people who read the WaPo article as well. Your intent and your love for him does not matter. It really doesn’t. ACTION is what matters, and those ACTIONS were abusive. ABA itself is deplored as being abusive, most autistics wouldn’t use it on a dog, you know. In fact, if those methods themselves were used on dogs, the person doing them would be reported to animal control.
If Zack is around 16? He won’t be showing PTSD from that yet. We usually don’t because we internalize it. It usually hits sometime in our 20s or 30s. ABA alone causes it, the rest of the things you guys did to your son? Regardless of your intent? It will only exacerbate it.
In fact, ABA breaks child labor laws, but because it’s ‘therapy’ it’s okay.
Your wife’s ‘beautiful’ book is going to harm so many more autistic kids. Desperate parents are going to do EXACTLY as I said they will, because you two put yourselves forward as being an authority on autism. Legally, it’ll have nothing to do with you, because you’ve both CYAd. Morally? That harm is on you both.
Good luck. Do not contact me again. Seeing either of your names in my inbox sends me into a panic attack. I only reached out in what is so very obviously a vain attempt at trying to halt this train wreck before it harms more autistic people because I care about people like me.
And I’m so sick of people like you hurting us. I have autistic kids who have to live in this screwed up world, and people like you, who claim that books like that are beautiful, and good, and needed? You make it worse.
There’s been another letter from him, claiming that I’m a troll and not-autistic (I knew that was coming, said so in my thread) but I’m actually smart enough not to respond to that.
I am a shaken, panic-stricken mess right now. I’m crying, and I HATE to cry.
Authors? DO NOT RESPOND TO REVIEWERS.
Reviewers? Be smarter than me and don’t try to reach out to authors to stop their harm. I’m an authenticity reader for autism and… I thought maybe she’d listen. Mea culpa.
10 thoughts on “In the interest of transparency”
Thank you for being so strong in the face of so much bile and pain. I wouldn’t have the mental strength to read the abuses in that book, and I’m in awe of you for doing it to show us and the world how horrible it really is. Thank you for speaking up for us.
Hugs if wanted. 🙂 Thank you.
Perhaps you’ve seen this, apologies if you have, but I wanted to share what hopefully is a much more positive experience I’ve found written about, since your experience reviewing this book was so horrible!!…
Since reading this and another article in the UK about the Welsh barber (who I believe is mentioned in this link), I’ve noticed several barbers, including one very well known brand in London advertising autism friendly hair cuts (I’ve tried so hard to remember which brand it was but I cannot!)
I’m in the UK and a special education teacher so I truly value the opinions and insight given by autistic adults.
Thank you so much! It really does help.
That’s such a pleasure I’m glad.
And as further proof that there are some of us out here who don’t act like in the book…. I made it my mission to get one of my students to the cinema as he had never been – his mum was fearful of what would happen but gave us her blessing to try
Weeks of preparation, arranging with the cinema so they could accommodate my class… Back up plans for if we needed to leave early, consultations with our school therapists and indeed the parents …
…..with no tears, no stress, no meltdowns… The autistic boy who’d never been to the cinema had a fabulous time and has been going ever since with his family! The rest of my class also had a fabulous time – we didn’t think for a second it would be so successful!!
But at the base of it all it is LOVE, Compassion, respect, care, understanding … That is needed. For autistic children / adults.. for any child/ adult.
Someone may have autism, or ADHD, be visually or hearing impaired or any number of things- we are all human and all deserve the same respect.
And I don’t say this as a mother, or an adult with several chronic illnesses (although I am both of these), I don’t say this as someone who’s career is working with students with a wide range of individual requirements and needs…
I say this as a human.
I adore this comment and what you do so much. It makes my heart glad. 🙂
So many hugs for you if allowed. Thank you for sharing this. I’m so sorry you had to go through that, both reading that joke of a book, and the vitriol spewed at you from its author.
I can’t believe someone can spend years of their life with a person and not understand them better than this. I really hope Zack grows up without too much trauma and finds his way out of her life, but as someone with emotional issues and an emotionally unresponsive (or only responsive in negative ways) parent, I know it really is traumatizing.
It’s heartbreaking. But that’s why voices like yours are so important. You’re so strong and brave. ;.;
Thank you so much for saying this. 🙂 It makes it worth it if it helped. I too hope Zack grows up w/o any of the trauma you and I both have (similar experiences here, sadly). Virtual hugs are always welcome. 🙂
I’m so sorry you’re dealing with this negativity, Kaelen, in response to your honest response. Thank you for standing up for those autistic kids.
You, and they, are welcome. 🙂
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