To Siri With Love, by Judith Newman, is a highly contentious book that has sparked significant public conflict between the author and the autistic community. I will review the book here and detail some of the reception of the book, which speaks volumes about the issues that have been raised about the book itself.

Before examining the content in detail, however, I would like to start by immediately addressing the most significant issue with the book, and it is an issue that effectively renders all other criticism moot: the author, Judith Newman, has written a tell-all about her 13 year old son. It includes intimate details about his masturbatory habits, a long litany of what Newman sees as intractable impairments, his humiliations and a great deal of, sadly often inaccurate, interpretation of his behaviors by Newman. Her son was/is not of an age, when he could understand the implications of this book or give his consent.

This book effectively strips her son of privacy and dignity in an extremely public way (New York Times best seller list!), and he will never be able to truly recover these. His struggles with his disability, his most embarrassing moments, his humiliations have now been put on offer for public consumption. Every potential employer, lover or friend will easily be able to connect the dots and have access to this information. In a world where prejudice and a lack of empathy for autistics means that only 15% of autistics classified as “high functioning” (a problematic label unto itself) are able to find work and support themselves (despite being able to do the work in question), this book deprives him of the right to withhold his diagnosis or mask his differences in order to have a fighting chance at an independent life. It outs him. In perpetuity. Books have a long shelf life. It is dehumanizing to start someone off in life with this added burden; especially someone with a severe disability that affects their social efficacy.

I think that most people would have no difficulty understanding that writing a tell-all about your under-aged children is wrong, especially in an age when many parents are juggling issues of privacy surrounding simply posting images of their children on social media without their express content. I feel fairly confident that reputable publishing houses would reject a proposal for a tell-all about one’s children, if not least because there are likely has legal issues attached to this. The fact that this book could still be published and is lauded as “heartwarming” by people like Jon Stewart is because Judith Newman’s son, about whom the book is ostensibly about, is autistic.

The social niceties that protect the non-disabled from this kind of gross invasion of privacy do not apply to those who are disabled. And this is the reason for the vociferous backlash from the autistic community. The community largely regards the book as glib dehumanization and a communal claim to what should otherwise be private. As Goffman noted in Stigma: Notes on the Management of Spoiled Identity, “The more there is about the individual that deviates in an undesirable direction from what might have been expected to be true of him, the more he is obliged to volunteer information about himself, even though the cost to him of candor may have increased proportionally.”

This is the lens, through which the entire book must be read. So while it is indisputable that Newman’s writing has a certain appeal, her dry humor can be enjoyable and she can structure a fairly tight narrative, none of that rehabilitates the flaws of the book. It is a ceaseless invasion of privacy, both of her autistic son, but also of her non-autistic son and of various other people she names in the book. It perpetuates damaging myths, against which the autistic community continues to struggle, and it reduces her son and ultimately, the entire autistic community, to objects that reflect on and inform the real subject of the book: Judith Newman and by extension, the allistic community. The merits of the writing itself  simply cannot offset the fact that the subject matter is, from top to bottom, wholly dehumanizing. If you want to read Newman’s writing, try something else she has written.

While presumption that the lives of autistic people belong to the public domain and are available for rapacious public consumption is most obvious in the fact that this book exists, the theme is also elaborated throughout the book in repeated speculation about the status of various individuals relative to the autism spectrum, some public figures and some private citizens. It should be common sense that speculating on the disability status or diagnosis of others in a public forum is grossly inappropriate. I don’t know how many of the individuals named, speculated on or outed gave their consent. I do know that, aside from her sons, she failed to obtain the consent of a high-profile activist in the autistic community. Newman’s response when this individual questioned the need to describe her in sexualized and ableist terms was to express what a disappointment this person must be to her parents, and to wax eloquent about where her parents might have failed with her.

Newman’s need to place the parents of autistics in the center of autistic lives and personal narratives is mind-numbingly consistent. It shows up in the book as she outs two people that she went to school with, who she has belatedly realized were, in her view, autistic. (Again, she is diagnosing people in absentia without their knowledge or consent, and naming them.) She is careful to tell us that she never participated in the bullying, but then proceeds to describe them in ways that replicate the bullying and derision they received in school. In a far more public forum. In describing how her classmates beat one of these individuals on the playground, Newman soliloquizes: “But [name redacted], why did your parents, so hopeful and clueless, insist on sending you to a school where you’d be known as the retard?”

She takes this ableist slur into her mouth, as it were, without once commenting on how inappropriate it is for her to be using it. There is no distancing from it, no commentary letting the reader know this is a hurtful and distasteful way to refer to autistics (or anyone at all), and seemingly no insight into how that might make autistic readers of her book feel. Readers who were sent to school to be “known as the retard” because there was no other alternative at that time. Newman seems blithely unaware that not everyone has or has had private schools for their autistic offspring available to them. She spills no ink on the fact that the problem was not the autistic child or her parents: it was the bullies. She never once laments how the parents of the bullies failed so miserably in teaching their children to have empathy.

Autistics as appendage to their parents is a recurring theme in the book, and it is at the heart of a disturbing number of the many tell-all books, blogs and vlogs about autistic children. The parent is the hero or villain in the story: the autistic person simply the dehumanized backdrop to their heroism or villainy. Blame is again laid at the feet of the “clueless” parents in the next description of a boy in high school, whom she likewise names and diagnoses as autistic. This is followed by what is probably the cruelest and most uncomfortable description of another human being that I have had the misfortune to read. I will not cite any of it here. There is no framing of the description, and literally no empathy. To assuage her guilt, Newman notes that she managed to track this individual down and discovered (she tells the world) that he is still living with his parents. I suppose the subtext here, that a person’s underlying situation never changes, holds true for Newman herself. And all these years later, Newman is still holding these presumably autistic classmates up for public ridicule and humiliation.

The descriptions of her son are marginally more compassionate. It is clear in much of the text that she cares for her autistic son, but also that she has no fundamental grasp of autism or the nature of autistic symptoms. This is despite the fact that there are resources from actually autistic people readily available to give her insight into the experience and rationale behind such symptoms. Thus, of her son’s repetitive behaviors such as listening to the same songs or watching the same videos over and over (repetition being the third of the core triad of diagnostic criteria for autism), she notes that he enjoys this because the repetition makes him “feel smart”, the subtext of course being that he is not smart, and can only experience “being smart” by repeatedly watching videos intended for children much younger than he. And of course that, is not the reason autistic people enjoy and actually need repetition. It has been written about by autistic authors and bloggers time and time again.

The truth is that allistics have very little insight into autistic thinking and routinely get it wrong. They then assert falsehoods that overwrite efforts by actually autistic individuals to correct inaccuracies, and do so successfully by their numeric majority and the fact that allistics enjoy access to positions of higher prestige owing the prejudice and exclusion autistics face in an allistic-dominated culture. And it is no surprise that they get it wrong. The truth is, no one really has insight into what another person is thinking. We can imagine what we might be thinking in a given circumstance, and if our brains are largely similar with only limited variations in various types of sensory perception, cognition etc. (as is the case for allistics), you may even be right.

Sharing a neurological structure that is not only largely congruent, but also heavily tilted towards social communication and the formation of social consensus, the ability of allistics to postulate what another allistic is thinking – so-called “theory of mind” – is nothing more than a statistical likelihood that they will have similar thoughts and feelings in a given circumstance. If theory of mind were some preternatural ability, of which allistics are possessed and autistics not, allistics should have a great deal more insight into autistic thinking and the autistic experience. Alas, that is clearly not the case.

Autistics do not have the privilege or projecting their thoughts and feelings in order to claim to understand the thoughts and feelings of others. The fact that autistics make up roughly one percent of the population means it is statistically unlikely that they will be thinking the same thing as someone sitting across from them. And even among autistics, there is so much variation in neurological development, that there is not a reliable congruence in thought.

The result is that one of the primary deficits regularly attributed to autistics is their lack of theory of mind or “mind-blindness”; something that Newman remarks on with regard to her son with grinding regularity. And this points to one of the great ironies in Newman’s book, which sadly reflects the greater irony in the medicalized discourse on autism. Because the truth is, Newman gets it wrong over and over in her self-involved ruminations about her son and the motivations for his behavior.

Moreover, Newman incorrectly defines “theory of mind” as an inability to know that other people (those with vastly different neurological structure) HAVE their own thoughts and feelings, rather than an inability to intuit what those might be. And here we are, back at the dehumanization of autistics like Newman’s son; not just by Newman herself, but echoing the dominant discourse at large. Dehumanizing because it once again repeats the old lie that autistics are “incapable of empathy” (long since debunked, as research shows that in many cases, autistics experience affective empathy much more intensely than allistics), which leads to the justification for the lack of empathy shown autistics, and routine observations by so-called “experts” like Pinker’s now infamous claim that autistics have more in common with robots and chimpanzees, and that without non-autistics, there would be no culture, autistics being incapable thereof. More than that, “theory of mind” is regularly touted as the very thing that defines us as human. By inference (another ability that Newman claims autists lack), those who are declared lacking in “theory of mind” are excluded from the human fold.

The most prominent criticism of the book has been focused on Newman’s lengthy contemplation about whether or not she will attempt to gain power of attorney over her son when he turns 18 in order to forcibly sterilize him, because she cannot imagine him as a parent and when she imagines him having sex (officially too much information, Judith), she imagines the soundtrack the Benny Hill show. I suppose this is meant to be humorous. Bear in mind that at some point, her son will likely read that and may not be as amused. She can’t imagine him being responsible enough to use a condom (it’s like she never considered what it would be like to have a teenage boy), and then cites as evidence of his glaring incompetence the fact that he has difficulty buttoning buttons. (Motor apraxia is a consistent symptom of autism; deficits in fine motor coordination are not a barrier to parenthood.)

She spends an entire chapter on the theme, and returns to it again later in the book, and despite the fact that when discussing treating her son for being short, she notes that “Adults should be able to do exactly what they want with their own bodies. No exceptions.”, she doesn’t extend that to the right to reproduce or start a family.  Autistics like her son start families all the time. This is something that should be his choice. The autistic community’s outrage focused on eugenics, as people with developmental disabilities like autism were not only sterilized (and “euthanized”) by the Nazis, but were forcibly sterilized as a matter of public policy in the US as late as 1974 out of a fear that disability would be further disseminated. The practice continues today at a private level with autistic children and children with other disabilities being sterilized by their parents. For an examination of the issue, see the article in The Atlantic called “Sterilizing a Child, for a Better Life”, dated Sept. 19, 2013.

And of course it is a form of eugenics. But it is also a profound invasion of her autistic son’s bodily integrity and rights as a human being. And it shows the degree to which dehumanization is simply accepted and the lack of ego boundaries that renders Newman’s son a bodily and ontological extension of Newman herself.

Defenses of the book center on the claim that it is a “personal story”, and therefore not subject to scrutiny as to the validity of its truth claims. But the book also wanders with disturbing regularity into claims about what it means to be autistic. What autistic people think, feel, why they behave the way they do. Newman is making a claim to authority, propagating myths and harmful stereotypes about autistics and specifically, her son, while at the same time hiding behind the defense that it is simply a personal story. And I concur: it is a personal story. The story of Newman’s son. Not one that was hers to tell.

Truth be told, we have not collectively moved on from the bad old days of forcing disabled children to perform in circuses and parading disabled children across a stage to raise money for charity. Feedback provided to the author via social media has been met with very little interest on her part, or with open hostility. Many autistics who have attempted to address concerns with her have been blocked. This is despite the fact that autistics who have reached out have done so in part to let her know that many of the things she laments in the book as supposed evidence of her son’s impairment are really not an impediment to his success in life. Autistics grow up on their own developmental course, precocious in some areas and significantly delayed in others. More importantly, autistics continue to develop throughout their entire lives, and people with challenges like those of Newman’s son have gone on to lead productive and successful lives.

That should be very good news to Newman, who repeatedly expresses her concerns about her son’s future prospects. It is therefore striking that she has shown so little interest in talking with people who are actually autistic. Because people like Newman are not interested in what autistic people have to teach them about what their child’s experience and struggles might really be like. She is not interested in autistics who speak, or write for themselves. She belittles them, dismisses them, publicly ridicules them, and ultimately silences them by blocking them and by coordinating her friends to report autistic reviews of her book as “abuse”. At the end of the day, for people like Newman, it is really all about them, and their interest in autism is in how it reflects on them. They want a silent autistic body to hold in front of them like a ventriloquist’s puppet so they can speak for the autistic, and extend their voice into a domain that is not theirs to claim.

In the interest of not robbing Newman’s son of his voice, his privacy and his dignity, this book should not be further disseminated.

 

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