There has been great a great deal of talk among members of the autism community about the Autism chapter in Andrew Solomon’s critically acclaimed book, Far From the Tree. Since I’ve been such a vocal fan of Andrew after seeing him speak, subsequently corresponding with him, and reading the incredibly insightful and thought-provoking introductory chapter of FFtT, I’ve been asked a number of times now for my thoughts. Sadly, reading time is even more scant in my life than writing time, so while I watched the discussions unfold with interest, I had nothing to add, as I hadn’t yet been able to read the chapter. Now I have.
So .. was the chapter what I was hoping it would be? I’d be lying if I said that it was. But what I’d like it to be is advocacy. And that’s not the book he wrote. While there were some wonderful aspects of it, there were also many at which I bristled. Given how passionately I feel about the subject matter and how intrinsically complex it is, that should surprise no one.
So am I here to defend it or critique it? Yes.
Editorial disclaimer: What follows is far from a complete discussion of the chapter. I don’t have nearly the bandwidth to devote even to re-reading it no less to copying quotes that I loved, nor those I found troubling, nor to properly refuting the inherently suspect study that Andrew implicitly if inadvertently validates by presenting uncritically. What it is, by necessity, is far more general.
Far From the Tree is not a work of activism. On the contrary, it is a book whose stated mission is to report on the experience of parents who are raising children with fundamental differences from themselves — as Andrew found them. In numerous cases, what he found was, in many ways, harsh and unforgiving.
He encountered parents who desperately wanted nothing more than to make their autistic children not autistic. He talked to some who, despite at least one’s own admission of the dangerous folly in doing so, blamed their own mental illnesses (including bipolar disorder) on their child’s autism, or at the very least on the stressors attendant to it (more on that to follow). He encountered those who have made it their life’s work to discredit and silence autistic advocates at any cost.
Those are hard things to read about, and, admittedly, the sharing of these stories in and of itself arguably serves to perpetuate them. They stoke the flames of fear and misunderstanding that surround autism. Highlighting the negatives, reporting on desperation, focusing on a narrative of tragedy push back against all the work that we do here to demystify the condition and to humanize the people behind the label in the public eye. It’s frustrating at best.
But the reality is that we live in a world where, to many, autism is still believed to be a tragic fate. Partly because it can, in its most extreme manifestations, in and of itself, be excruciating in many ways, but largely too, because society’s response to it makes it so. The conflation of those two concepts is hugely problematic and I ‘d argue that it is necessary to make this point far more emphatically than Andrew did. Autism IS NOT society’s response to it. Autism is challenging. Sometimes heartbreakingly so. But the condition itself is not responsible for the perception of it nor the lack of support for those whose experience of the world is subject to it. I beseech anyone who writes about autism to expressly clarify that distinction and anyone who reads about it to bear it in mind.
But nonetheless, those stories, even the most negative, are real. And omitting them from a report on the current autism parenting zeitgeist would be, I would argue, dishonest.
During the civil rights movement, horrific pictures and stories were the stuff of everyday news. Freedom fighters being repelled by fire hoses, lynchings and burning crosses on lawns. Hideous, unthinkable horror perpetrated on human beings who were thought to be less than. As horrifying as this was, it was the very real state of race relations as they were.
The images spurred activism. The activism brought change.
We have to understand and examine the reality of discrimination, misunderstanding and fear in order to eradicate them – even within our own families.
To his credit, Andrew did what I think is an admirable job of trying to provide a comprehensive overview of the autism community and its various and often contradictory advocacy efforts. He featured autistic advocates in their own words and focused on some of the incredible (yet of course still sorely insufficient) progress that has been made in including autistic voices in a conversation once and still dominated by parents, legislators and so-called experts in the field. He shined a very positive light on the Neurodiversity movement and on those who celebrate autistic minds while still advocating for support and accommodation that will allow them to flourish.
He was clear that his research showed that in some circles passion has eclipsed critical thinking and many have held onto long discredited studies over solid, credible science. To those who would criticize his inclusion of certain groups in the chapter, I would say two things: 1) not acknowledging the existence and influence of large and visible organizations is a grave error and 2) It is very clear that he is not uncritical of them. As an avid fan of words, I take care in the ones that I choose. I’m fairly confident that Andrew does as well. He chose to describe a particular group that seeks to eradicate autism as ‘antineurodiversity’. If you’re not sure why that matters so much, I’d ask you to consider the following terms and the messages inherent in each of them: Pro-life, Anti-choice. You with me now? The words we choose reflect our own perspectives, and, more importantly, help to shape our message.
To that end, he spent a fair amount of time talking about autistic filicide – the murder of autistic children at the hands of their parents. I am grateful that he saw the importance of including the topic, as horrific as it is, in his discussion and that he understood the epidemic’s relationship to the recognition of autistic humanity. “Those who kill their autistic children usually claim they wanted to spare those children suffering,” he said, “but anyone who questions the autism rights movement has only to look at these stories to see how urgent a cause it is to argue for the legitimacy of autistic lives.” I may or may not have shouted, “Amen,” when I read that sentence.
By contrast, I was disappointed that Simon Baron Cohen’s work was presented uncritically, and that it led to the reassertion of the false assumption that all autistics lack empathy, but alas, the new Sally /Ann study did not yet exist when the book was published and well, Andrew is hardly the first to take Baron Cohen’s inherently biased theories at face value.
Last week, TPGA posted the following on their Facebook page:
Please do not recommend Far From the Tree’s Autism chapter — it’s like a Reader’s Digest Condensed Books of autism parenting horror stories. I don’t care if Andrew Solomon ties the chapter up with a bright Neurodiversity ribbon — I had to put the book down and walk away, and can’t imagine anyone not being traumatized by it, especially those new to autism.
The conversation continued in the comments on that post, and a number of specific concerns were raised about the content of the chapter.
Andrew wrote a response, followed later by another. His second response was lengthy and thoughtful and specifically addressed the concerns raised. For me, though, it was the end of his comment that meant the most.
“I’ll stop there,” he said, “but I want you to know that I take these issues very seriously. And I want to say that I’m genuinely sorry if what I thought I said is not what you heard, and I take responsibility for trying to put that right.”
Autism is complicated. Navigating one’s way through the autistic and broader autism communities is fraught with landmines, some visible, many not. Prefered language changes without warning. Emotions run high and passions run deep. Years of accumulated slights and dismissals and discrimination make trust difficult. I live and breathe this world and still I cannot possibly provide a reliable map of my home here. It is impossible to write about the community as a whole without citing its fundamental dysfunction, nor acknowledging the damage that happens at the extremes.
But self-reflection and analysis are necessary, even if it’s someone else who holds the mirror and forces us to look hard at what we see in it. Knowing how we are perceived from the outside is vital if we are to effectively advocate beyond our own bubble. If we feel that our perspectives are being mischaracterized or marginalized, or even all-together ignored, especially by someone who clearly does his research and cares about getting it right, I think we would do well to examine how we can better convey our message. But that’s not all we can do.
I don’t know many writers, and far fewer of Andrew’s status, who are willing to say, “I’m genuinely sorry if what I thought I said is not what you heard, and I take responsibility for trying to put that right.”
To me, that is a priceless invitation. An invitation to engage in productive, respectful dialogue not only with him but with each other about what we think is important. About how we believe we must move forward in order to ensure that the horrifying portrayals of autism in Far From the Tree can someday soon become reminders not of how things are, but how they used to be.
Andrew reported what he found. What he found is hard to hear. And a poignant reminder of how much work we have yet to do.