the autism chapter

*

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.

17 thoughts on “the autism chapter

  1. Autism is a difficult thing. Having not yet read Andrew’s book I can only say that the hard stories have and continue to make me feel less alone. I also admire Andrew and you, Jess for considering others perspectives and feelings. Its made me a better person having you in my life. We need more people like you two in the world.

    Love,

    Jersey.

    • I want people to accept autism and hire people with autism etc… but sometimes I feel like advocacy also works to silence our need to talk about the difficulties that come with autism out of fear that any discussion of the difficulties will perpetuate society not accepting autistics. I am a single mother of a boy with Asperger’s. I cringe when it is called “high functioning” because it has been so challenging. I love my son, but also want to have it affirmed that this is hard. I want to be able to talk about the hard stuff, to have it acknowledged, to have an outlet. I feel alone. I once commented on Facebook about how hard it was and a parent of a child with more severe autism snapped back that he would do anything to have a kid with Asperger’s because his child’s situation was so much harder than mine. I wish for a support group, but fear that I’ll be looked down upon if I with a HF child dare to complain. I’m bombarded with messages about how special and wonderful kids with autism are. I’m not saying they aren’t, but that it is all sugar coated and reality isn’t all that. Denying parents the voice to talk about the hard stuff just pushes it all down and away so that we can’t deal with it in a healthy way.

  2. I’m with Jersey. Again. I was on the fence about reading the book because sometimes it’s just all too much for my emotions to take in. But reading your post Jess makes me want to pick up the book. We need stories – all stories – as parents and caregivers and teachers and we need them with a balanced perspective. It’s what you do every day Jess and it’s what it sounds like Andrew wants to do too. I love that as a writer he is willing to engage and listen to all sides and have the hard conversations. Thank you to you both.

  3. Comment:

    I ran out to buy this book. The chapter on autism , It was heartbreaking. Sickening to read. But I found his book quite thought provoking. I am the mother of 2 on the spectrum. One who is considered higher functioning (which means what exactly- he still struggles so much and so do we) and my youngest who is severe. Very severe. People do not like to hear what our life is like with him. It’s not supposed to be talked about. It makes people uncomfortable. People stop asking because they don’t like the answers. But we still need to move on, live it, there are no options. We as parents have so little help. I sometimes feel that he is forgotten in the talks. The children and adults who cannot speak for themselves, care for themselves, the parents and caretakers who are both physically and mentally exhausted. There ARE 2 sides. I love both my sons. more than anything. I Advocate and fight, and the truth it IS hard. And I don’t like that we as parents now aren’t allowed to say that. I really feel the phrase if you’ve met a child on the spectrum, you’ve net one child on the spectrum is so important.

    Comment:

    I think {commenter above} said what I wanted to. I write a lot about autism as well, my eldest son is on the spectrum and very severe. I try to do all I can from a therapeutic, daily living and medical standpoint to help lessen the terrible difficulties he has because of his autism. And I too think his story needs to be shared just as much as HF autistic individuals and self advocates. I struggle a lot in my writing because I do not want anyone to think that I feel my kid is a burden or somehow less worthy of living a full life. He is worthy. And as much as I appreciate neurodiversity and the unique abilities people with autism contribute to our world, I dont think our struggle to lessen or eliminate some of the severe aspects of my son’s autism is antineurodiversity (what a word! Yeesh!) So I share the good stuff and the horrible tough stuff, but I struggle in my difficulties with autism. Love my son. Don’t love his autism for how tough things are for him. So can he be separated from his autism? Well, no. And sometimes yes.

    Comment:

    Wow thank you for that- your words were my thoughts exactly!!

  4. Comment:

    I loved your insight, his gracious invitation into a further dialogue to ensuring that what he thought he said was what we heard. As far as empathy… If ever you need an example, please ask me and I’ll tell you of a young child recognizing another’s sorrow and reaching out in the way that makes sense to them, bringing comfort.

  5. Comment:

    I love that this is opening up about how our kids can both vary from low to high functioning (in a minute, a day or an hour) and that as parents we may have kids on the spectrum who have more severe neurodevelopmental difficulties than others – we would never want to polarize the autism community by having advocacy only for HF individuals – that would be the kind of in-fighting that stymies progress – which would be a shame as there is much passion in Diary of a Mom’s words and followers….

  6. it is true autism is hard. i have autism, the hard kind. but i have decided to be up to the challenge as my parents did because their is no other palatable option. andrew solomon is no enemy of those of us who are here with jess to “demystify the condition and to humanize the people behind the label in the public eye” because andrew is genuinely trying to know. so should we. andrew will learn from us and we from him. life is perspective. to live a balanced wholehearted life we are wise to learn how we are perceived so we may better connect with others and each respect who we chose to be. so, i just purchased “far from the tree” to learn more of those perspectives knowing they may be hard to hear. i hope andrew will repay my respect and purchase my audiobook, “i might be you: an exploration of autism and connection” so he may learn my hard truths. may we all transform “years of accumulated slights” to the now of empathy and compassion. sometimes hard to hear but listening b

    • “andrew will learn from us and we from him. life is perspective. to live a balanced wholehearted life we are wise to learn how we are perceived so we may better connect with others and each respect who we chose to be.”

      as always, a thousand amens to your wise words, my sweet friend. and though i can’t speak for andrew, i’ve no doubt that he would have purchased your book if not for the fact that i mailed him a copy of the hardcover yesterday. i thought you might agree that he was one of the *right people* at just the right time to receive it.

      love

      the connector

  7. I’m skeptical that anyone can honestly write “i have autism, the hard kind.” I am a 50 y.o. rehabilitation counselor and I work with adults and kids with autism – the hard kind – every day. None can read. None can write. None even know what autism is. THAT is “the hard kind.” I also work with adults and kids that have autism – the not so hard kind – who read and write and drive. But people who have “the hard kind” of autism can’t write about it. They can’t even talk about it.

    • jay,

      i implore you to read barb’s book. barb is nonverbal. she did not have any form of functional communication until she began the arduous process of facilitated typing at nineteen. in the book, she writes very frankly about her appearance and her behavior and the desperately erroneous assumptions that people make because of both.

      please, learn about her before you decide who she is based on the fact that the she is able, with help, to type what she is thinking.
      above all, i beseech you not to cast aspersions on anyone else’s description of their own experience, especially someone for whom the sharing takes so damned much effort.

      please, read the book. not just for yourself, but for all of those people with whom you work.

      http://www.amazon.com/Might-Be-You-Exploration-Connection/dp/0988344904

      jess

      note: barb, forgive me for jumping in. i have no intention of speaking for you – just can’t let this kind of thing lie without response. defensive daryl xo

    • dear jay, it is my hope you will be open to knowing that many of us who are disguised as poor thinkers are in fact more like you than you may choose to believe. we may have a variety of physical and mental challenges confounded by profound difficulties with communication which shroud our humanity. i invite you to please take a few moments to read this link about how some of us with the hard kind have broken through with lots of hard work and sustained focus. thank you for caring. real b

      “a note on how this book was written” http://muleandmuseproductions.com/about-the-book-i-might-be-you/

  8. In regards to the subject of parents blaming themselves for mental illness producing autism, I think the doctors and specialists perpetuate that guilt. As a mom, I spent a long time raking through what I could possibly have done to make my child different; after all, I carried him in my body, I nursed him at my breast, I cared for him every day. If something made his brain different, it must have been me who caused it. Did I miss a prenatal vitamin? Did I not engage him enough, read to him enough, did the very act of staying home with him inhibit his development? Then we went through the evaluation and diagnosis process, and every professional asked the same questions: Do you or anyone in your family have mental illness? And I wondered, Is it because both my husband and I suffered from depression (thankfully at different times)? Did the fact that both our brains suffered cause a perfect storm to affect our child’s brain? Should we not have procreated? And down into the negative spiral it went. If Andrew Solomon had interviewed me a year and a half ago, I would have broken down from the weight of the guilt that I felt. But thanks to neurodiversity awareness, blogs like this one, authors like John Elder Robison and Temple Grandin, I am seeing my son not as a product of defective parents, but as a unique person, learning to “celebrate [his] mind while still advocating for support and accommodation that will allow [him] to flourish.” So thank you, all of you, who speak out to correct the misperceptions, and give us this opportunity to grow in appreciation of each other.

  9. I need your Help. I haven’t even read the post. But couldn’t find a way to contact you. I need your help. I’m researching certain areas of MA to move there. I have found great info about several cities around the area I’m looking, Westwood, Braintree, canton, etc. but is different to hear from people living there, around there. The info I’m mainly looking for is autism services. My son is young, preK 4yo, he needs the help. We need the help. We have te help were we are but the schools are not great for my daughter. I need to balance both. So I’m looking over there. Any comment? Any “don’t even think about!!” Or “I have heard great stuff about” I’m pretty practic and also objective and I know every experience is different. As every person be bckground plus necessity Etc. but it would be nice to have. Little info from. Personal point of view from… Anyone ..

    Thanks and sorry for not in the topic comment.

    • Sabrina, I’d suggest leaving your query on the COMMUNITY SUPPORT PAGE. Folks might have some thoughts on those areas. I’d also reach out to each town’s Sped PAC – in MA, Special Ed parent advisory councils are required by law, so every town has one and they typically have contact info online. (http://www.masspac.org/) They can be a great way to reach out to parents directly.

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