Some dark places, and a call to action

"It's getting light blue," Isaac commented idly as the first wisps of light began to peek through the window shades.  He hopped down off the bed, picked up his copy of Knuffle Bunny, and began to read. "Not so very long ago, before she could even speak words..." He read the book straight through, gazing intently at the pictures, and I let the music of his voice drift over me; rushing sometimes, stopping momentarily as he turned the pages back, carefully examined the pictures, and read them again.

"Why is Trixie upset?" I asked him at a certain point. He ignored me and kept reading, his attention fixed on the book.  "Isaac, look at me," I said, my voice a little louder than before. He looked me in the eye. "Why is Trixie so upset?" I asked again. "Because she lost her Knuffle Bunny," he replied calmly, and went back to reading.  

*

I first heard about the Ann Bauer article on from some friends on Twitter. "Sick to my stomach," one wrote, "Shaking," and I clicked over to see what everyone was talking about.  "For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew," read the introduction, and I felt a heavy dread gather in my stomach.

Let me get this straight, so there is no misunderstanding. 

Autism is nothing if not mysterious, and it is as impossible for me to untangle my son's autism from who he is as it would be to imagine him a girl, or a teenager, or your child, or anyone other than he is now at nearly six years old. I do think his autism is beautiful because it's part of who he is, how he appreciates a pratfall, loves the music of words, devours books, tenderly kisses his stuffed bunny before bed.

And despite the fact that he's gentle and happy and bright, I would be lying if I told you I didn't wonder sometimes where this all will lead, and if he'll be okay.  I'm his mom.  It's my job.

Honestly, though, I worry less about him than I do about you. Well, probably not you exactly, because you're here and you're reading and, if this isn't your first visit, you know a little about our story.

I worry about the world, and people's conflicted and often hostile reactions to autism. Dennis Leary, are you listening?  

I worry because, if you read the comments to Ann Bauer's story, they start off compassionately, and then understandably begin to question, and then, slowly veer into judgment. They question her credibility, her reliability, her motives, even her sanity. Several people, who grossly overestimate the economics of online publishing, accuse her of trying to make a buck off her son.  And then they become ignorant and cruel and outright frightening, so much so that Salon actually ended up closing the comment thread. 

I worry because when you say "autism" some people turn ugly, and, what's worse, they feel justified in doing so. 

Ann Bauer did a brave and risky thing: she told a personal story that she knew would shake us up, and shake us up she did. And amid the praise for her bravery and candor, there was far too much blame and mud-slinging and ugliness. 

She didn't deserve that.

Whatever it is, to whatever dark corners our questions lead, whether this turns out to be one family's painful story or something else entirely, whether we are confident or slightly worried or frankly shit-scared, we need to listen.

We need to rally around the people who speak out, most particularly when their stories are the ones that are most unbearable.  Even if we leave with more questions than we had before. Even if it makes us sick to go to those dark places because that's what happens to other people who (we would like to believe, wouldn't we?) somehow deserve it.

We owe it to our kids--and to the adults on the spectrum who deserve our understanding and respect--to be better than that.

We need to be better than that.  

We need to be BETTER THAN THAT.

Comments

[Betty and Boo's Mommy]

What a great post. I haven't read the Ann Bauer story, but yes - we do need to be better than that.

[kyra]

susan, this is beautiful and brilliant and yes, a critical call to action. thank you.

[Emily]

We need to be better than what? My problem with Bauer's story is that it is completely, confusingly inconsistent. She's scared the crap out of parents all over the Internets with this particular piece, but in previous pieces, the origins of her son's current nightmarish life appear to be in ill-applied psychotropic drugs and misdiagnosis. I departed from reading her pieces feeling more confused than anxious. Her latest piece seems to link her son's autism and violence, but one that was written about a year ago links her son's violence with medications, but he still seems to be ON medications. People are freaked out all over the place, but do we really know WHY? Because she's touched on some inchoate fear that our children will become monsters? How many of us will find ourselves or our children in the series of events that led up to this tragic, imperfect storm of an outcome for her son? From what I've read in her previous pieces...not many of us. But boy did it tap into those fears.

I appreciate her honesty, I deeply deeply feel for her entire family, I sympathize strongly with the need for written catharsis, but I just felt that this piece was one big frightening explosion of feeling that seemed to link for any reader violence and autism, without mention of her previous conclusions that the violence arose from a misdiagnosis and inappropriate application of medications. He has aural hallucinations. Does that sound like autism to you? What is it? What's out there that talks about the timing of early adulthood and the onset of these behaviors? Because it's not autism.

Scary? Yes. But that's all. No information, nothing about the relationship among the drugs, the timing of the end of adolescence, differential diagnoses, none of it. Just "AUTISM!" "VIOLENCE!" And honestly, I would want a writer for Salon to be better than that.

Obviously, most people who've read it who read this circle of blogs disagree with me. But I came away from that piece feeling...like my feelings had been manipulated and like many pieces of the puzzle that Bauer has presented across her essays don't fit together. And that left me feeling judgmental. Hell, yes, I felt judgmental. We're ALL judgmental. She wrote her feelings, her opinions, her experiences. I write my responses. I know the judging is afoot.

At any rate, the side of me that has a deep understanding of physiology left that piece feeling that there was a whole lot missing, including any link between autism and violence in this particular situation.

[Niksmom]

Wonderful post, Susan. Thanks.

Emily, I take the "we need to better than that" as a call to have open and respectful discussions. But, I also have not read the comments on the Bauer piece, either.

I think there will be far more such linkages in the future btwn drugs, autism, and violence than one might suspect. Medications are the treatment of choice for so many families who don't know how to help their child/ren, who may not have the resources (financial or emotional) to take the time and effort to try to tease out all the threads and address what may, in fact, be issues mistakenly identified as autism.

I say this based on my own experience with my son, Nik. He's going through some terrible episodic pains which he cannot tell us about (nonverbal). We've been guided by numerous doctors to put him on this, that or another medication —none of which are intended to treat a child of his age in this manner. We have seen from previous instances of seizure medications and other drugs which affect the central nervous system that Nik becomes extremely agitated, combative, and self-injurious— *not* his norm, for sure. (Needless to say, we are choosing to find other avenues before we resort to serious meds.)

The more people I talk to, the more I realize we are closer to the exception than the rule. I think there *will* be more such instances in the future linked to autism. Regardless of the indirect link, it can't be eliminated from the discussion as a factor; so many people (regardless of neurology) do not respond well to such classes of meds as are being used on our children and the long-term effects are not really clear enough.

It is a tangled web.

[Susan E]

Hi Emily,

I read your post last night after I posted this and had a feeling I'd hear from you :-)

I came away from the Bauer piece with two reactions: one to the piece itself, and one to the comments.

I decided to post about the comments because I am still working through my reaction to the piece, and because for me the comments reveal something really ugly about people and their response to disability and difference.

Don't get me wrong; there were lovely comments too, and ones like your post that critique and fairly call Bauer's story and judgment into question. I think that's healthy and appropriate and what this is all supposed to be about.

But then at a certain point the comments went feral, and I couldn't stop thinking about that, and what it means, and whether it's "the Internets" or that her piece tapped into something more insidious about how people really feel about autism and neurological disorders and differences (which yes, I think she contributed to).

I know the Internet--which makes our community possible--also makes that kind of veiled hatred so much easier. Like being behind the wheel of a car, the Internet somehow creates a mechanism that allows people to devolve to their worst.

And with Dennis Leary's comments in mind, and the seemingly blithe way that people use the "R" word, and even Obama's comment on Leno about the Special Olympics (for which I know he apologized immediately, which ended up shedding some positive light on this issue after all), I think it's as important to analyze the reaction to the piece as it is the piece itself.

I do not let Bauer off the hook for the way she characterized her son, or the irresponsible way she disclosed her thoughts of suicide. I had a nagging worry about her facts, though without any background in physiology and neuropsychology to back it up.

I think as always your critique (elements of which I saw in some of the other comments) was incisive and even-handed, and helped me clarify my own thinking, for which I am always profoundly grateful.

But I guess what I want to add to this conversation is a refusal to let people off the hook for their ugly behavior, even when(especially when) the subject is so complex and emotional.

[Emily]

Susan, I know what you mean about the comments. In fact, I just stopped reading them after a certain point because I just couldn't absorb any more hatred and stupidity. Sometimes, I just swear to myself that I'm NOT going to read ANY comments on a particular autism-related story because I know they will just make me mad. You are absolutely right that people hide behind perceived anonymity to be callous, judgmental, and cruel. I did a couple of posts about the Alex Barton and some other stories that were really more about the comments than the stories themselves for that very reason. And you may have, as I have, occasionally gotten some tacky or nasty comment related to autism on your blog.

Lately, I've really tried not to click on headlines that will take me to stories I know I don't want to read. In the same vein, I've tried to avoid reading comments that I know will just make my blood starting percolating over the ignorance and vitriol. It's just depressing. Yet, it's also necessary, I think, to be aware that there are people out there like that--and seems like so many of them--so that we can continue to call them out, to try to educate. How much can one person do? Not much, but maybe at least a little? It seems like such an uphill, sometimes fruitless battle.

In my usual way, in my post above, I cut straight to arguing without mentioning that I do like this post. So...I do like your post. :-)

Niksmom, I think you're likely onto something about the *interaction* among the drugs, the autism, and the violence. Definitely. I wish clinicians would/could pay more attention to these interactions than they seem willing or able to do. Obviously, if one's neural constructs are not the "norm," one should not be treated along "normal" routes for behaviors, especially on the flanking cusps of adolescence.

[shannon]

My original comment had a transporter accident, so it would seem.

I think we have to be careful about our expectations for normal human parents facing trials that would challenge an emotional superhuman.

Admittedly, Ann's story temporarily derailed me. My son is far younger than Ann's, but (and I don't think my husband will be tracking your comments so I will write this here and nowhere else) his unmanageable violence, exacerbated by the wrong medications, had me one step away from a breakdown during the entirety of December.

Like Ann, I considered us to have done due diligence and tried absolutely everything we, behaviorists, and psychiatrists could think of to help my son rein in his violent behavior. I had several days in which I was in charge of my son and his preschooler sister (his favorite target) with no help and no school. We spent between four and eight hours in the car, each time. The only other way to keep him from attacking people was constant snacking.

I refrained from writing much during that time and am still shaky, because I was emotionally flayed and still am intellectually reamed; I can only read Ann's piece through my own, smaller lens, and wonder how she could even string two sentences together.

(BTW My son is on the "right" medication as of Jan 1. and we are all much better.)

I feel Ann's need to tell her story. While I cling desperately to the positivity of emotional/parenting role models like yourself and Kristina and Emily, I appreciate the need to tell it like it is when it really is bad.

I also wonder how much editorial influence went into the sensationalizing of this piece as opposed to Ann's original take, in order to take advantage of shorter online attention spans.

Mostly, I wonder if Ann has the kind of community support and resources so many of us are fortunate to have formed online, and in the real world. I am capable of reading her piece, shuddering, and then looking elsewhere for an antidote. I have friends who ensure that such antidotes get placed in my hands, or inbox.

All I really feel, a few days post-publication, is hope that in talking about the crisis in which she and her son have found themselves, they have been offered help and antidotes they might otherwise never have known about.

[Emily]

Shannon, that was just very well said. And I am glad that your family are all much better.