Of Neurodiversity, Bows and Lyres (#218)
31 January 2006
Hyperlexia is not uncommon among children with autism; Charlie has never shown a particular interest in the letters of the alphabet (though he did have a long infatuation with the numbers when he was younger and would turn the capital E backwards so it looked like 3). Teaching Charlie to read is a top focus both at school and in his home ABA sessions, and we have been working on this on many fronts: sight-reading words, beginning phonics, review of the names of the letters, review of identifying upper- and lower-case letters.
And Charlie has been making good progress in all this, at school and at home--indeed, he is often most at ease when sitting at his desk working with a teacher.
Charlie learned his numbers when he was 2 1/2 and the alphabet and reading have come to him much more gradually, at his own pace. He can take as long as he needs: Here is one instance where the end, the goal, matters most, whatever the means it takes to get there.
For to read and to write can ultimately provide Charlie with a powerful tool to express himself that is comprehensible to more people than something like the "language of stimming." For Charlie, stims like running up and down the room or babbling nonsense sounds or running his hands in sand or a container of beans, seem both to allay anxiety and to provide some kind of "perceptual pleasure" (in the words of fellow traveller MothersVox). Jim and I tend to be on hyper-alert when Charlie does these things because, for him, there is a measurable connection between stimming and self-injurious behavior in the form of head-banging.
Sure, the head-banging is a kind of communication---"get lost, I am really MAD, don't bother me, go away, I don't want to!"--but I am not sure what kind of defensible argument might be made to "just let the head-banging be." Needless to say, head-banging is dangerous---I take Charlie to the optometrist regularly to check his vision (head-banging can cause detached retinas)--and a smart kid like Charlie would understand all too well what message was being communicated if a helmet were fastened onto his head. Through careful assessment, we have learned that Charie's SIBs are connected to his stimming and have therefore had to teach him "replacement behaviors" for the stims.
There are a number of autism blogs by authors with autism, in which topics such as stimming or neuroleptics or the "myth of the person alone" appear. From reading these blogs, it would appear that autism bloggers with autism and autism bloggers without autism (i.e., parents and teachers and other professionals) inhabit different planets if not universes, or are at least in deep and divisive conflict with each other.
In addition to websites like autistics.org and also Kathleen Seidel's all-encompassing neurodiversity.com, self-identified autism-authored blogs are those by Autism Diva and Ballastexitenz. Our mutual topic is autism. I, an autism mother, write from my outside, "anthropologist" perspective trying to gain what knowledge I can and weighing this against the realities, sometimes a bit too grim, or bittersweet, or joyous, of Charlie's days.
But, in truth, we autism-with-and-without-autism bloggers share more in common than we differ. We all think 24/7 about autism; we all know that there is tremendous confusion out there; we all write the truth we live. According to the Pre-Socratic philosopher Heraclitus:
"They do not grasp that what differs, is brought back in agreement to itself: there is a back-stretched connection, just as in the bow and the lyre."
"What differs [diapheromenon] is brought back in agreement to itself [heotoi xunpheretai]": Heraclitus compares this seeming contradiction to the image of the tension in the string of a bow or of a lyre, which (in ancient Greece) were both made of wood bent back [palintonos, the palin as in a palindrome] against the natural grain of the material. It was the tension on the strings that produced the strength of the bow to shoot an arrow, or the melodic tones resonating from the lyre.
Neuron is classical Greek for "sinew" and also for "cord" and "string," and for "nerve," and for the neuro- in "neurology" and "neurodiversity." Perhaps we ought to envision true "neurodiversity"--represented in part in the spectrum of voices, opinions, ideas, beliefs, perspectives across the blogosphere--as those differently tuned strings on a lyre or (as it can have more strings) a harp. Plenty of slings and arrows get thrown at us everyday in our corners of Autismland--a basic lack of understanding of neurological difference, the now-expected stare in the grocery store when Charlie tapped the bakery items on their shelves tonight. Maybe I can never truly be "inside" autism but I can do what I can, which is to give Charlie every chance to achieve his full potential and, yes, maybe someday to write and read back to me his version (his own blog?) of his life in Autismland.
Heraclitus' word for connection is harmonie, which means "joining, framework, agreement, covenant" and is the root of our word harmony. In our neurodiverse cosmos, here's to the expression of different voices in hope of making some kind of new harmony, altogether in Autismland.
I can't wait to read Charlie's blog some day. I imagine he will write about the ocean, those wonderfully long bike rides with his Dad and of course his siamese twin, his Mom.
Here's to finding harmony in Autismland!
Posted by: Eileen | 01 February 2006 at 06:45
"here's to the expression of different voices in hope of making some kind of new harmony, altogether in Autismland"
yes, kristina! here's to that vision and here's to charlie's future writings in all forms, blog book poetry and postcards from his heart. they will all be beautiful!
Posted by: | 01 February 2006 at 14:42
Heraclitus should be pleased with the fine use you've made of him! I'm so glad you're blogging about all this . . . I have the feeling that we are all making a gigantic conceptual map of Autismland . . . a much-needed navigational tool. Thank you, Kristina.
Posted by: Mothersvox | 01 February 2006 at 18:21
harmonie...A lovely word. This is so much of what I have been thinking for sometime, yet you, as usual framed it in a beautiful, thought provoking, eloquent way that only you can.
I have always emphasized reading and writing for your same reasons, I believe it opens a whole new doorway to communication with others. I am looking forward to reading Charlie's blog too oneday.
Posted by: SquareGirl | 01 February 2006 at 19:00
Thanks for this entry (and for your whole blog, for that matter).
It has long pained me to see the various factions of the autism (and autistic) community waste so much time and energy demonizing those who disagree with them.
Posted by: Kevin Greenlee | 02 February 2006 at 09:24
The world of autism -- with and without is already far too fractionalized -- the perilous track of interpretation and opinions.
But with every viewpoint, every debate, perhaps we step closer to the TRUTH.
Posted by: Estee | 02 February 2006 at 10:06