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I Was One of the Scary Kids

December 28, 2012 Leave a comment

Reblogging this because it’s incredibly important. We need to hear from this perspective, and we need to listen. Otherwise, we don’t stand a chance of making the world a better place.

Cracked Mirror in Shalott

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizationswould be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted toothers, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people…

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Categories: Autism, Signal Boosts Tags: ,

You Are Not Adam Lanza’s Mother

December 16, 2012 Leave a comment

A better come-back than I could have come up with.

An Open Letter to the Internet

December 15, 2012 Leave a comment

On the topic of the latest, tragic shooting. I’m hearing a lot of speculation about why and how such a thing could happen, as always. None of us can imagine what would make a person do something so horrific, and so we speculate. And with that speculation, sadly, comes scapegoating.

People speculate about what type of person might be able to do such a thing: Not someone like us, but maybe people with mental illness, autistic people, goths, atheists, people who play violent video games, people who listen to heavy metal, children of single parents…

The terrifying truth is: we have no idea what pushes a person to the edge of humanity and beyond. If we did, we’d go around finding all those people and locking them up for good.

We know some factors that can contribute — we know that people who are raised in violence, abused, traumatized by war, and otherwise treated badly throughout their lives are more likely to snap and revisit that violence on the world… but if we went around preemptively locking up everyone who’d had it rough, we’d run out of jails in the first 5 minutes and most of them full of the innocent besides.

We know that drugs are more likely to make people do things that are desperate and rash. We know that desperation and despair can rob formerly decent people of their humanity. But these things primarily lead to crimes that we can understand, even as we abhor them– robberies, muggings, individual acts of violence. What could push a person to the point of causing destruction on such a massive scale is simply beyond explanation, and all the more frightening for being so impossible to understand.

All I can say is: let us not allow our fear to turn us against each other. If there is one thing we can do to reduce the risk of violence in this world it is, I believe, to treat each other with decency and respect. To reach out every day and remind one another of our own and each other’s humanity. To treat each other with compassion and concern, to encourage our empathy to strengthen and flourish. To mourn when tragedy occurs, but not to let it kindle hate in our own hearts.

Thank you.

Thoughts on Savants and Skill Trade-Offs

December 12, 2012 Leave a comment

I just watched this wonderful clip from “60 Minutes”

(Description: Derek Paravicini is a profoundly disabled man in his early 30’s, and a musical prodigy. Born 3 months premature, he is blind, autistic, and has profound cognitive impairments, resulting in the inability to answer many simple questions such as his current age. The newscaster interviews him, his father, and his music teacher, who has been his close companion for the past 25 years. Derek is a musical savant who can play hundreds of tunes from memory, in any key or musical style, as well as composing works of his own. An intensely social person, he adores meeting with his audience in person and taking requests from them, and does a wide variety of charity concerts. His music teacher describes meeting the young Derek when the boy shoved him off a piano stool in order to get to the instrument, and realizing, as Derek banged out imitations of everything he heard, that music was not only Derek’s passion but the language in which he communicates most fluently.)

***

I adore this story, in spite of the occasional use of pitying language about Derek. Kudos to them for not actually mentioning autism at any point– I only learned about that diagnosis from the wikipedia article, although I was fairly sure of it just from watching him in the video.

But at the same time, I cannot help but see this as a cautionary tale. There are so many ways it could have been tragically derailed.

The hero of this story, aside from Derek himself, is the music teacher, Adam Ockelford, one of those rare neurotypicals able to come to profound understandings about someone who processes differently. Think: a young child interrupts a music lesson this man is giving to another child, forcibly shoves him aside, and begins violently banging on the piano with the edges of his hands, his elbows, and even his face. A dozen typical responses suggest themselves, including:

  • The child is seen as destructive, and removed/disciplined before the teacher even has the opportunity to hear that he is playing an actual tune.
  • The teacher recognizes that the child is playing a tune and dismisses it as mere useless parroting (a horribly frequent explanation of autistic interests. There’s a special kind of idiocy required to claim that both imitation– think the “Who’s on First” routine in the movie Rain Man– and inability to mimic are both tell-tale symptoms of the same disorder. Autistic kids are alternately punished for repeating something they notice, as when they echo sounds they find interesting, and chided for not aping the actions of a therapist during mock play in behavioral training sessions).
  • The teacher might see musical potential but refuse to teach the boy until he learns behavioral control, better motor control, language… any number of things that might have been outright impossible at that age. Instead, this teacher was clever enough to pick the kid up, deposit him across the room, and play as much as he could– a few bars– before the child returned and shoved him away from the keyboard… realizing that Derek would understand this form of communication in a way that he did not comprehend any other. He notes, brilliantly, that Derek learned about emotions from music, the reverse pattern from how most people do it.

I’m not saying that all autistic children have savant potential. But it’s clear to me, from every autistic I’ve ever met, that they are able to do so much more if we meet them on their own playing field rather than forcibly dragging them onto ours.

More importantly, I’m frightened by what crucial things we may overlook in trying to fit these children into the mold we envision for them. When we hope for normalcy, or strive to make them “fit in,” we may do them– and ourselves– a grave disservice.

I was talking to a good friend today, one with what I consider a “neurotypical bias”– the idea that, to some extent at least, typicality is an ideal or at least an average that should not be deviated from too far. We agree that every child needs a method of communication, but disagree over how best to provide that tool. We have different philosophies on behavioral therapy, obviously. He feels that most of these children will benefit from at least a certain amount of being taught how to fit in– and, to be fair, I can’t always disagree with this.

Certainly, more educational and social opportunities are offered to people who can “pass”– if not for neurotypical, then at least for neurodivergents who are well-enough “behaved” to keep their weirdness under wraps in public. It’s hard to weigh these concerns– of being outcast, shunned, barred from mainstream classrooms, institutionalized– against the erosion of ego and emotional stress of a child who is going through rigorous training to repress most of their inherent tendencies.

But there are other risks, too, to “normalization.” I don’t know how much of Derek’s childhood was spent seated at an ABA table, being forced to memorize skills slowly, tediously, by rote. Certainly the way he greets people is classic of the “robotic” responses autistic kids are taught– regardless of who he is meeting, under what circumstance, Derek does and says the exact same thing. Is this because the repetition is easy/restful for him, or because he’s been drilled, like a circus seal, in the exact words, intonation, body language that constitutes a “proper” greeting, to the point where he couldn’t come up with a way of his own if he tried? Other clips of his speech suggest a playful and humorous temperament– how much more of that might we see if he hadn’t been trained so exactingly?

“They have to be able to get along in the world, at least,” my friend says in defense of behavioral intervention. I know what he means– I’ve seen the looks of hatred thrown at children (and their families) when those children flap, echo, stim, rock… And see above about opening doors to the world. But what doors might we be shutting?

Derek seems to have no understanding of time or number– he cannot hold up three fingers (“I don’t know how to do that that” he tells the interviewer, holding up an open hand in confusion), give his age, or estimate how long he has been playing the piano (“maybe a year?” he offers uncertainly). Chances are, he could have been taught these things. Hours of repetition, of “intensive behavioral intervention,” may have been required, but he could learn. At the expense of how much time spent with music? Maybe even at the expense of the vast proportion of his brain that has obviously been devoted to music rather than to “normal” skills? Would that have been remotely worth it? What if the trade-off was musical genius versus toilet-training, or the ability to feed himself? Personally, I hope everyone would agree it’s worth helping him with self-care if that’s the price of his incredible talent.

But where do you draw the line? How do you know when a child’s obsessive interest is the basis for something so remarkable? What if it’s a talent that isn’t as widely appreciated or marketable as musical skill but brings the person as much joy as Derek’s concerts bring him? How do you decide what to prioritize as “what they must learn” and balance that with what they want to learn? There is quite a lot of evidence that savants may lose their extraordinary abilities when forced to focus on other things– including, sometimes, verbal language (see Oliver Sacks’ essay “The Twins”). That’s a much harder trade-off to imagine.

All too often, though, I suspect we sacrifice great talents for far pettier things– for the ability to sit quietly, recite times-tables, make eye contact when “appropriate,” participate in a game of baseball. I am friends with at least two autistics who lost savant skills– permanently– because of time they spent on psychiatric medications– one tried these medications willingly, as treatment for anxiety; the other, tragically, was forcibly medicated as a teenager for “behavioral problems.” (Incidentally, this is far from the worst that has happened to them– both have been severely abused in multiple ways for being autistic, and much, though not all, of that abuse was done in the name of making them more acceptable to the neurotypical majority).

Does it always have to be a trade-off? Is there a way to have the best of both worlds? I don’t know. Certainly, even non-savant autistics who are much more mainstreamed often enjoy neurological advantages most others lack– eidetic (photographic) memory, amazing powers of concentration, synaesthesia, superior logic skills, hyperlexia. But how often do we fail to acknowledge these gifts because we are too focused on deficits? Shouldn’t we instead encourage them, even though it may be at the expense of being able to “get” Seinfeld or tie shoelaces? Would every such child be a genius? Of course not. But I’m willing to bet almost all would turn out to be a good deal more gifted than we think possible now– and far more importantly, I think they could be a lot happier than we imagine, too.

I cannot help but grieve at how often we must tragically miss the potential for beautiful things, talents and ideas invaluable to both the individual and society at large, because we lack the patience and open-mindedness to accept a child who thinks, communicates, and acts in ways that are strange to us. Thank you, Adam Ockelford, for seeing beyond the obvious, for looking at potential rather than impairment, for being willing and able to speak to Derek in the language that made sense to him.  Your empathy and insight allowed something truly miraculous to occur, and I hope that we can all learn to follow your example.

Masterpiece Societies and Puzzle Pieces: An Open Letter to Patrick Stewart

December 8, 2012 Leave a comment

Said it better than I did.

The Quixotic Autistic

Dear Sir Patrick Stewart,

You are one of my heroes. I grew up with the characters you depicted on the big and small screen, who made me laugh, cry, think, and soar to new heights of emotion. You inspired me both as a human being and as your characters, to re-think the way I saw the world, and examine the injustices marring it with critical eyes, and hands ready to re-shape it into a better, more humane, more equal place.

I know you probably tire of hearing this, but more than any other character you depicted, the one who most greatly challenged me intellectually and compelled me towards action was Captain Jean-Luc Picard of the USS Enterprise. Captain Picard embodied everything I ever wanted myself to be: Passionate, convicted, and filled with courage and eloquence. His incredible speeches resonate with me now as an adult who fights a daily battle…

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Meaning Well Is Not Enough

December 6, 2012 1 comment

Re: http://www.autismspeaks.org/about-us/press-releases/tom-hanks-will-ferrell-derek-jeter-betty-white-william-shatner-sound-off-for-autism-speaks

My heart is broken.

A number of truly wonderful people, including my idols Sir Patrick Stewart and Betty White, are participating in a fundraiser for Autism Speaks, presumably because they are unaware that Autism Speaks is widely mistrusted and hated by the demographic it claims to be helping, for reasons ranging from financial mismanagement to an outlook about Autism Spectrum Disorders that verges on eugenicist.

I’m not up to explaining right now why these celebrities should NOT be helping Autism Speaks, of all organizations. A good list of such writings is available here:

http://autisticadvocacy.org/tag/autism-speaks/

Please help me boost the signal, spread the word, and get the message to the people involved that they made a poor choice of charities this time.