Thoughts on To Siri With Love

I just finished a controversial new book, To Siri With Love by Judith Newman. Reading this book made me feel like memoirs from autism moms are a thing whose time has come and gone . . .

At the same time, I can’t help but believe the publisher who brought this story to market, and the reviewers who praised it, must not share that opinion.  And of course the author does not seem to hold that opinion either.  I’ve no doubt she loves her autistic son and wants the best for him. 

So why do I find this book troubling, even as the non-autistic literary community has lavished praise upon it?  And lest you think it’s just me that is troubled . . . the reason I read the book was the storm of tweets and messages I received from autistic people urging me to boycott or criticize it.

Perhaps this is an autistic thing. Maybe it's a situation where non-autistics find a story about one of our tribe interesting or entertaining, even as we autistics find the same words deeply troubling.

Without giving it all away, I’d say the author’s attitudes toward her son, her family, and autism appear to be at odds with the set of values and ideals that is taking shape among autistic self advocates today.  It would be a great understatement to say the author’s views would be aggressively challenged by, for example, the neurodiversity students at a university like my own William & Mary.

As expressed in the book, the author’s ideas triggered many autistic readers (including yours truly) to such an extent that the book’s other messages were missed. For example, the premise of the title - that a young autistic fellow could find a friend in Apple’s Siri seems largely lost.  Little is made of the relationship between Gus – the autistic star of the book – and Siri other than to dismiss it for shallowness and nonhuman nature.

I found that ironic as I’d written a chapter “One With The Machine,” in Look Me in the Eye. In that I describe talking to and becoming part of a concert lighting system.  Not one of the million-plus people who read that story called it shallow.  If I could talk to lighting, why can’t Gus talk to Siri?

It’s not for me to answer, but I’d speculate that the mom may not understand that aspect of her son, and she dismisses what she doesn’t get.  I don’t know her, but I know that is a common human trait and I’ve known other people who would behave exactly that way.

The tone of the book left me feeling uncomfortable in many spots. I had that feeling when the author talked about her non-autistic son (musing about masturbation), her husband (who made her suffer through endless monologues about the subway, which she says she tolerated so he wouldn’t inflict them on someone else) and her autistic son Gus (for whom she wishes to remain adult guardian in case she needs to regulate his reproductive ability.)

That last bit was particularly disturbing to many autistic readers.  Her description of Gus is that of a sweet, kind teenager who thinks and talks, and gains more skills with every passing year.  Guardianship law mandates that people with developmental challenges be given the maximum amount of self-determination, which seems opposite her stated goal.  If I were Gus and I read that, I would run away tomorrow and take my chances on the street. 

Now, the author may feel that's irrelevant because her son won't read it and react that way, but putting her son aside, I'm surprised she did not consider how badly another autistic person might react to those words.  They clearly position her writing as from a non-autistic parent's perspective and embodies much of what actual autistic people criticize in such literature.

Early in the book Newman implies her  son is not fully sentient. She asks why she is unable to find anything she can share with him.  Yet her descriptions paint a picture of a boy with many interests (which she must not share) and enough thoughts that sentience should not be in doubt.  A thoughtful reader is left to wonder how much of the book's reflection on the child actually bears upon the mom?

There are other characterizations that may be unintentional but which were still deeply offensive to the subjects.  For example, autistic creative person Amythest Schaber was described as “looking like everyone’s favorite manic pixie dream girl.”  I can’t speak for Amythest, but I can assure you that I’d be upset if someone introduced me that way.  What does it matter what someone looks like, if the purpose of discussion is their insights?

  

If you are writing a nice, funny, or helpful family memoir there is a good test authors should use:  Would the child subjects of the book be humiliated if they read the story as an adult?  In my opinion this book fails that test. It says things I would not write about my own kids, had they done those same things.

Ten years ago when I wrote Look Me in the Eye there were a ton of autism mom blogs describing family behaviors in similarly embarrassing detail.  I wondered about that at the time, thinking how upset I’d be to read such about me.  Thankfully many of those stories have since been taken down or edited. 

With respect to Siri With Love, I will just say that if Gus reads it, I hope he believes his mom does have great love for him just the way he is and will be.

With all the talk of Gus’s disability and how (in his mother’s stated opinion) he may not amount to much on many fronts, one thing comes through loud and clear:  Gus does not seem to feel disabled at all.  He’s a pretty happy guy, content with life.  As she says, Gus is not self injurious angry or destructive.

Might that be just enough?  Or if the author wanted more, might she direct herself toward helping develop a safe secure housing plan for Gus if and when he requires lifelong supports, knowing she will be gone?  I did not see much of that in the story, yet that is many parent's biggest concern.  Gus's challenges are no doubt real and significant.  I get that much from the story. My issue is with the attitude, which just did not make me feel good.  

I’m an autistic guy, and a parent of an autistic son whose mom also was (she died a few years ago) autistic. I’m the son of an autistic dad, so I’ve got autism covered all ways.  Even so, I realize autistic people come in all shapes, sizes and viewpoints and some are rather divergent from my own.  I’ve little doubt that Judith Newman loves her son and had the best of intent writing this book, and I feel bad for penning what feels like a relentlessly negative review of her work.

I hope my words help her to understand why her book has elicited the strong response she’s getting from some in the autism community, and set her on a path to reconsidering some of her views in light of the thoughts emerging from actual autistic people.  Ms. Newman is clearly a talented writer and I expect we will hear more from her in the future.  I certainly hope I can paint a more positive picture of her next work.

There were many spots where this book made me uncomfortable as I saw myself in the narrative.  The husband’s monologues – I’m like him today.  Gus’s obliviousness to some things – I’m still the same now.  In both cases I would very much hope my own wife or mother did not feel as she wrote.

If this book shows one thing it is this:  Parents need to hear about autism from actual autistic people.  Parents need support too, but the place to get that is in private, not by discussing our(their) kids in a public forum. 

Always remember that the only people who truly know what it’s like to “live autistic” are actual autistic people.  Everyone else is watching and guessing, sometimes correctly, but other times . . . disastrously wrongly.

John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.