Where do I begin? Maybe first tell about the controversy. If you have lived under a rock, you might be unaware of the fact that autistics can be very vocal when needed, and boy, did we need to be vocal.
A mother of an autistic, also a writer for the New York Times, decided to write a book about her autistic son, Gus. Normally, I would be fine with that. Carly’s voice was also written by her dad and by Carly herself. The problem with this book is that she didn’t ask consent of her little boy. That’s problem number one. Problem number two is that the book is full, and I mean full of ableistic stuff, not only about Gus but also about other autistics. Darius Mccollum, the autistic that is fascinated by the trains and metros, is also publicly humiliated by this book.
I am going to list all the things that I found wrong with this book, so you know that I am not making this up. It took me several days, and a lot of venting sessions with my girlfriend (yes, Judith, I have a girlfriend. Autistics can love! A miracle!)
I will list them per chapter, so you know how much is wrong with this book. Also, I saw a lot of 5 star reviews of autism parents and grandparents… do they really not know how much is wrong with this book? Or don’t they wanna know? I really wonder.
There are clinical psychologists commenting on the book that the book is wonderfull… I think they really should reread the book…
Let’s begin the journey, shall we? (I will put in parentheses my commentary. so you know what I was thinking while I wrote it) disclaimer: I read the dutch version of this book. We, Belgians and dutchies, can speak english as if it’s our second language (although the occassional spelling mistake might happen), so I think that nothing will be lost in translation. If so, send me an first edition english copy and I will find the same problems in that one. (I have translated senteces again from Dutch to english, but would love the exact quotations from the book, so if someone could give me the English versions of these sentences, that would be awesome.
ps: I will probably have forgotten to put a few into this list, but as you can see, there are alot of things that makes this book ableistic enough to be banned forever.
My girlfriend informed me that this article might be spoilery! (so don’t read if you don’t have enough spoons or don’t like ableism).
- person first language is preferred by autistics? and I politically correct?
- How she recognizes autistics by 3 defining traits: 1. We have trouble with theory of mind (as you clearly demonstrate in the book, you actually don’t know why Gus does the things he does, so we could argue that you also have trouble with theory of mind (and there is a theory that refutes Theory of mind altogether in the book: “the passionate mind” by Wendy Lawson”), 2. Autistics apparantly like repetition and details (I don’t know about you, but put on the same movie in a time span of two years and I will not watch it with you, as I can still see it in my minds eye to clearly. 3. We are apparantly all nuts. (and this is only on page 18 (we aren’t even on a real chapter yet… this is just the fucking introducton)
- She recognizes mothers of other autistics by their appearance (apparantly we are such a burden that the beauty of our mothers starts to go backwards. Yup, apparantly we are a burden… (still the introduction… How can anybody with an autistic in his life like this book?)
- Just to clarify, there is such a thing like the halo-effect. Clearly I noticed this already in chapter one, but this is a theme through the whole book: Henry good, Gus bad.
- An autism diagnose is something terrible (apparantly in this chapter. Yes, she calls it that.)
- Gus will never have a first job, or know a loving person that will truly love him. (I have read the complete book and even Gus proves her wrong by having several girlfriends in the book.)
- Autistics are like Aliens in the men in black, they are there, but you don’t see them. (Notice that in the introduction she stated that she could identify autistics, now she apparantly can’t. Apparantly we are not humans, but aliens. We feel alienated, but that doesn’t mean we are aliens.)
- She noticed that kids (probably autistics) were bullied at her school. She didn’t join (likely she did, but she’s painting a pretty picture of herself (or tries to) but she didn’t do anything against it either, which to me, is the same as being the bully.
- Off the bat she starts with all kinds of crackpot theories of what might have caused Gus’ Autism. (Also the refrigerator mother is mentioned here again, in a “woe me” self-pity kind of way)
- At the end of this chapter she sees her son and his personhood as 2 different things. “When I look at Gus the person, instead of Gus the psychological …, then I am calmed” (translation from dutch to english by me)
- When Gus likes routines, it’s weird. When she likes routines, it’s not weird at all, and it’s because she can’t help it. (I don’t think she knows that changing our routines is actually quite scare (and also awesomely explained the the book “the passionate mind”)
- Apparantly there is a difference between being a fan and being an autistic fan of something. (Ableist much?)
- Gus is a talented musician, but this is big in comparison with all the things he can’t do? She can only name a few things he is good at, I can name 3 (thanks to her writing in the book, but she names a lot more deficits. Does she even love her child?)
- First contradiction: Gus doesn’t know what love is, but they are going to a concert with Gus’ sweetheart.
- Repetitive music is good for autistics (Like we can’t enjoy anything else than Laurie Berkner or sesame street music) (I love all kinds of music. Metal, trance, classical,… everything.
- Gus can’t recognize different emotions. Maybe the boy has alexithymia? (context: Gus did something wrong and she asks him to look at her face. First: this is abusive and manipulative. and autistics don’t like to look at faces, and especially if negative emotions are in play. You are done with the emotion as fast as it’s passed. We can remember that moment for months maybe even years. But not looking at someone’s face doesn’t mean we don’t know we did something wrong)
- Square root of Pi? (context: the boy wouldn’t know how to take the square root of pi (as in, he can’t do maths) but in my knowledge, Pi is an infinite number, I goodled it( as I was to curious and try first for yourself. Here’s a solution.)
- Because Gus repeats things on youtube or Netflix (as in watching the same 5 second clip) he is irritating.
- He can play music by ear, but she doesn’t she him perform, because he gets emotional. He has to learn theory of mind, to learn that you can do things to please other people, instead of only playing for himself. She wants to make him a dancing monkey, that only does things to please others, instead of enjoying it himself. (Just for reference, here’s an Jodi DiPiazza, autistic girl playing piano, just like Gus could do, also Here’s an example of an autistic, named Derek Paravicini, that plays wonderful piano. (did I mention he is blind?))
- In this chapter she starts of describing Darius Mccollumn’ train abossession. She compares him to Frank Abagnale, whom was a fraud and now works for the FBI. (So she compares someone whom can’t help being obsessed and really wants to work as a train conductor or bus driver, with somebody who did everything for his own gain?)
- Gus likes stimming with trains. He likes to make the sound. She constantly asks him to get rid of his trains, to gift them to a younger child. (She also tried to get rid of his teddy bears, with whom he sleeps every night, but of which she can’t remember the order of how they go on his bed, His dad can, and several of his aids could too, but not his mom).
- Apparantly all autistics can’t travel by bus (She talks about Darius a few sentences ago… I know a lot of autistics that travel by bus daily!)
- There is a very, very personal fact revealed about Darius that is shared by someone whom was with him on a psychiatric ward. (It’s not her place to share it and the person whom posted it to her on facebook should be prosecuted in my opinion as in patient confidentiality).
- She compares her manipulative embarrassing her kids to get her own way, with developing his own opinion by Henry and the being fascinated by something and wanting to talk about it from Gus.
- Her opinion: Halloween is the best time of year for parents with autistics because then nobody looks up if you act weird in public.
- She shares intimate details about Gus’ toilet behaviour, how low his pants are at times, and how he walks naked to the shower when there is company. (Great mother for sharing these details. (see, Judith, we can do sarcasm).
- Embarrassed is someting autistics don’t know, because being embarrassed is a social emotion, and autistics can’t do social. (the countless embarrassing moments I have in my own life, that I know are embarrassing, don’t count apparantly. Maybe I’m not really autistic. My diagnose is a lie!)
- She follows Henry’s tip that she should let Gus pick up the phone when there are telemarketers as they would get bored of him pretty quickly, instead of teaching Gus how to have a conversation on the phone. (She follows abusive tips of her teenage son, which she probably knows or should know are bad. Her kid doesn’t know the distinction yet, but she enforces that her autistic son is a thing to be abused).
- Telemarketers call her house less often because there must be “that-kid-is-crazy”-list
- She went to a concert of “music for autism” but what autistics thought of the concert doesn’t matter. What the parents thought of it matters more.
- Echolalia is repeating sentences ad verbatim without getting what it means… (yup, autistics are mindless robots).
- At the concert she also notices a boy that repeats “I’m sorry” to his parents over and over. She wants to hug the boy and the parents (plus), (she doesn’t notice that this might be a sign that the boy is emotionally abused, why would he apologize so much?)
- She wants that gus lived in normalland
- She plans a vacation, without consulting her boys (or at least not Gus) and then she doens’t get that Gus doesn’t like to go out, cries because he is out of his normal enviroment and doesn’t want to do anything.
- She wants to make worldcitizens of her boys, something they don’t want (something she wasn’t either) and then starts to cry when they don’t want that (Does she ever talk with her boys in a meaningful way about what they want or where they want to be?)
- Henry has good memories about being home, but she likes to take the spotlight yet again and talks about that she must be an abusive mother because he likes the sound of the heater.
- Her husband (in his eighties) has medical issues. He doesn’t travel with them, for apparant reasons, but she tells it to her girlfriends that he doesn’t want to go with them. (So her girlfriends think she is the ideal wife, while her husband is a prick for not wanting to go with her, that would be my conclusion if she told it to me like that).
- Her husband is afraid that she might lose Gus on the trip, with reason, as she had to give his description to an officer from his 3rd up to his 10th because this mother of an autistic child, didn’t pay attention enough, as she knew that he was prone to running away. Great mother, she should get the nobel price of mothership.
- Also: She doesn’t take the blame for Gus’ running. It’s what half of autistics are prone to do and cites examples of statistics, and also drags a death of autistic into it, just to make her point that it’s apparantly not her fault.
- She hopes that Gus is gay (because gay people adore their mother. )
- She does 2 seperate trips with her boys. With Henry she goes to Paris, and of which she is super-positive. With Gus she goes to Disneyland and she is negative.
- She really, really hopes that he ever will become “normal”
- Gus is to small for his age and doesn’t make a problem about it. She does. Ever her co-worker gets the absurdity of the situation and jokes that she maybe can get his nose fixed as well, as he has her old nose.
- John (her husband) shares a fact about a superlice and uses the word mutant. she hijacks the conversation and says “speaking about mutants… what about our son” (talking about Gus. I know I have talked about mutants here on my blog, but it’s the same as talking about nigger (here not meant in a racist way just to prove a point) as a black person yourself.)
- She thinks that Gus will ever be able to think for himself. She constantly treats him as an oblivious little child. (devil effect (oppossite of halo effect) in this case)
- The next part is the often debated part about forced sterilisation of the boy. The part that sparked the controversy. here’s the image. The part in the book is longer and more disturbing. I will never know why a loving mother would think this of her own child.
- This whole paragraph about sterilisation and such ends with the words “for me”. It would bring a lot of calm to her thinking that her son can’t reproduce (as her logic is that autistics can’t be dads. Want me to give you a dozen examples of autistic dads?)
- She knows that this idea is bad, as she talks about Hitler (whom got his idea from Henry Ford), and other eugenicists.
- Hypocritical: She talks about that if the procedure would be reversible, she would be the first in line to do it for Gus, but at the beginning of the chapter she literally says that what everybody does with their body is their choice, but apparantly that same curtusy isn’t granted to you when you are autistic.
- She talks about taking her children in bed with her to bond more. She talks about research that 40 to 60 percent would take their dog in bed with them and then says this glorious sentence: “If my beloved golden retriever, monty, doesn’t have a chance. What chance does Gus have?” (Does she literally state that she loves her dog more than her own autistic kid?)
- She has the “rule of three” Gus can only hug her 3 times in public places (because he likes to hug a lot, his sign of showing affection, but she doesn’t grant him that)
Chapter 10 is what landed her this book deal. This is the chapter that previously in another form was published in the new york times. This is to me the least offensive chapter in the book, as I have only one note on it.
- Gus friendship with Siri started because she was bored of answering and talking with her autistic boy. (Great parent. Reads to me like she really deserves an award for “most emotionally abusive parent of a disabled child”-award. Here’s an example of how it should be. )
- context: in this chapter Gus has a job as doorman in the apartment-building they live in. Henry has several crooked jobs and ways to get money.
- With Henry she is always delighted in what he does, with Gus she is always negative. He really likes his “job” as doorman, but because mom doesn’t like it, it’s not good.
- Autistics are only good to do repetitive tasks (and we like them a lot to, apparantly). We don’t need to do things for a higher purpose (like we autistic advocates do). This is not possible in the image Judith has about us autistics. We don’t need job satisfaction. Also: we are nitwits that don’t want to get higher education or don’t want to work, because there are jobs for us somewhere. (She doesn’t take in account that we get bullied a lot more or are refused a job when we even mention the fact that we are autistic).
- She doesn’t think Gus can get a real paying job.
- In this chapter she quotes an insulting quote (in my opinion) from John Elder Robison and she loves it.
- After 14 years she is surprised that Gus can pour himself a glass of milk. (How low does she think of her child? Also how little effort does she take to teach him things?)
- Gus has a real paying job sitting on cats. He likes it, but is taken advantage of. She knows it is wrong but doesn’t say anything. His brother wants to have a word with the abusing party, but is stopped by his mother. So, she just lets the abuse slip (even writes it of that Henry must think that he has the only right in abusing his brother like this. She also gives an example in how Henry came up for his brother in Mcdonald’s before, but his mother couldn’t… why not?)
- She ends the chapter with a Starbucks CEO that hired an autistic on the job because there was no one better than him in creating the perfect milk foam layer. (See, there are people that see the merrit in our autistic quirks)
- She cares about Gus (but belittles him a few sentences later). She is scared for Gus future. She has a recurring dream about Gus living alone and meals are delivered and he can’t open the package and stares at it as if he was a dog staring at his empty bowl. (As if he can’t learn how to cook when he is older)
- They use the language from Gus’ report cards to make fun of eachother. (Does she think that Gus doesn’t notice? What message does this give Henry about his brother?)
- She invades her autistic sons privacy to chat with his friends… without any reason for doing so.
- She makes fun of Gus way of communicating in text chats, while not taking the time to learn him an appropriate way, of getting him a book to do so (he can read, so why doesn’t she take that opportunity?)
- She doesn’t like the way Gus has friends (he has friends!!!), but she doesn’t care to explain what friendship means or what real friends are, while she thinks Henry’s way of friends are wonderful.
- She doesn’t like criticism (as if we autistics didn’t notice already, we were silenced in her twitter feed), but she doesn’t like the caretaker that likes John more than her, and whom blames her for not taking care of her children (I think I already gave enough examples in how her taking care of her kids could be improved).
- She seemingly cares about her son, but even zipping his jacket has he learned from a caretaker (whom was so enthousiastic she even filmed it).
- She sees somebody for 25 years in the same building (thinks the guy lives with his sister) but apparantly he is married and even he cares more about Gus than she does (as he calls him his friend, after they waved to eachother a few times)
Chapter 13 (you can really start to notice that my spoons were gone for the day, as my commentary starts to get less and less from here on)
- She talks as if autistics aren’t curious in other subjects except the subject of their fascination (Judith, I really dare you to find a subject I am not curious about).
- Again she makes comments about sterilising her son
- She keeps repeating that autistics are people that don’t get what happens in other people’s heads, as if we are some kind of idiots.
- Again talking about vasectomy and her thinking that autistics can’t be dads.
- She talks about autistics in this chapter as if we are naïeve, stupid people that can’t philophize or don’t get the meaning of death
- She ends the chapter that both Henry and Gus will be there on her deathbed (off course, it has to be about her), but that only Gus will hold her hand (1-0 for Gus)
- She compares 2 completely different things: why can Gus play piano but can’t button his shirt? (why does she need to share that he can’t button his shirt or undo his buttons (he will rip it open like the hulk). (I can’t pick up small screws or write very neatly because of my bad motor skills, but I can false riffle shuffle a deck or cards and perform magic effects which require a different kind of dexterity. Did I tell you already I’m autistic?)
- She uses an article about cambridge students that disliked a Simon Baron-Cohen talk to give a not-my-child-rethoric (I think Autism mom bingo is now complete).
So these are the things that were ableistic in this book.
The house of books and HarperCollins, please stop publishing this book. As it is very, very ableistic and not liked by Actual Autistics.
Also, New York Times, if you are hiring, and you need someone whom can do better research than one of your writers. I’m open for offers.
Also Judith, take lessons by autistics in how to take care of your autistic boy. He needs your love. Or take at least a class in how to be a real mother.