Sunday, December 3, 2017

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. 


13 comments:

jonathan said...

Parents need support too, but the place to get that is in private, not by discussing our(their) kids in a public forum

I don't understand why you wrote and published "raising cubby" then. I have not read that book. I read Newman's book, more than a few months ago after it first came out, but my memory of it is sketchy.

John Elder Robison said...

Good point. Read Raising Cubby and you will see. My book does not contain passages that I am embarrassed to have my adult son read. This book does, were it written about my family.

In this book the author says she was at odds with her kids re their portrayal in her story. That should have been a red flag if not to her, to her editor. Raising Cubby has no such red flags, and my son read and approved every word before release to Random House.

jonathan said...

of course, you're not gus, so you can't really speak for him or anyone else. Parents of autistic children have been writing memoirs going back many years before you were involved in autism and they will continue to do so and my guess at least some of them are going to be published whether ND proponents approve or not, it's up to the marketplace. If I recall, her son is severely impaired and he may not be capable of reading and understanding what she wrote about him, so that makes it difficult to ensure she's not treading on any of his territory he may feel is private.

John Elder Robison said...

At no point did I purport to speak for Gus and you are right - I don't know if he can or will read the book. That does not change my ethical opinion of what's ok to write. Maybe you have a different view, and that's your right. I've expressed mine.

Kamil said...

I hope Gus will be able to give his own opinion on the book as well, and I sincerely hope he will understand his mother better than she understood him.

Cal said...

Even if Gus can't read, this book will shape the attitudes of those who come in contact with him for the rest of his life.

I haven't read it, but I have read other writings about him. He comes off as a charming, sweet, polite and considerate boy, one who offers kind words to Siri and who is concerned that his iPod should have a fulfilling social life.

Partly on the basis of his consideration for the wrong others, his mother concludes that he has no empathy. Yes, too considerate equals no empathy.

One is reminded of Gernsbacher's well-supported argument that neurotypicals process every way that autistic people differ from them as deficit, without any reflection or justification.

Foskew Family Down Under said...

I don’t want to buy this book and support the exploitation and author, but I do want to read it. If you’ve finished reading it could I please borrow yours?

JoLynne Dougherty said...

Foskew Family Down Under, try Interlibrary Loan. Google it. You should be able to borrow it from any world-wide library.

John Elder Robison, thank you for an excellent article.

Jodi said...

I hear what you are saying about privacy and I believe your thoughts are valid but as a neurotypical mom with an adult child on the spectrum I need to also say that we don't always have a private place to discuss the issues that arise in our and it children's lives. We don't know how to deal with the more embarrassing issues that our children are facing and the fact that they are embarrassing topics makes it even less likely that we want to share them in our inner circle primarily because we don't want people that know our child to judge him or her. When we have a resource that shows us that we aren't the only one experiencing similar issues it helps us to navigate and to find support. I wish I knew a way to find the balance between respecting their privacy but also bring a resource to others.

Emily Morson said...

Unfortunately, it's hard to control what will make its way from the internet to one's inner circle...Jodi, are you familiar with any of the following?

* Tiny Grace Notes: https://tinygracenotes.blogspot.com/

* Thinking Person's Guide to Autism group and book: http://www.thinkingautismguide.com/; https://www.facebook.com/thinkingpersonsguidetoautism; https://twitter.com/thinkingautism,https://www.amazon.com/dp/B0071F2HRG/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

* Respectfully Connected group: http://respectfullyconnected.com/, https://www.facebook.com/RespectfullyConnected; https://twitter.com/RespectConnectd

* The #AskAutistics tag on Twitter

* Links to resources on self-injurious behavior specifically, in case that's one of the embarrassing issues: https://emmashopebook.com/tag/pinching/

* We Are Like Your Child blog: http://wearelikeyourchild.blogspot.com/

I know some of this stuff is more relevant to younger children, but blogs like Respectfully Connected and TPGA have a LOT of posts on a lot of subjects, and #AskAutistics seems to be answering mostly questions about adults. Hope something helps. A lot of people really mean it when they say "ask an autistic person," and want to help.

willaful said...

Jodi -- ditto! It's so very hard to find such a place (and though the links are appreciated, Emily, Twitter and blogs are quite public, especially Twitter.) I desperately need to connect with other parents in a space that's safe for my child.

Jodi said...

Thank you for the resources, Emily. My son is now and adult and the issues are no longer the concern that they were several years ago so I don't have the same need as before. The main point I was making is that there is a balance to be found between the parents that need support and the privacy of our children. I think openly discuss the needs of both helps us to recognize the needs and to better search for a solution that helps both.

GeorgeBMac said...

John, thinking of your comparison of responses to Gus's connection to Siri and your connection to your lighting system, I would suggest that the difference lies mostly with the results and functionality of the connection -- rather than the connection itself. Gus's connection to a thing does not produce any benefit to society so it is held in disdain. But, yours helped produce a wonderful concert and is held in esteem. I think that Steve Jobs' words (from the 2017 Apple Keynote) may explain that connection to inanimate objects best:

"There's a lot of ways to be a person. And some people express their deep appreciation in different ways.

But, one of the ways that I believe people express their appreciation to the rest of humanity is to make something wonderful and put it out there. ... In the act of making something with a great deal of care and love something is transmitted there.

And, it's a way of expressing to the rest of our species our deep appreciation.

So, we need to be true to who we are.
And, remember what is truly important to us."

I think Gus's deep connection should be channeled and supported into a stepping stone to let him use his "care and love" in ways that benefit humanity and himself. That is the part that, in her quest to make Gus more like her vision of normal, his Mom missed miss the rose and only saw the thorns.