Taboo Subjects (#221)

Charlie dragged himself onto the bus, arrived at school in a decent mood but tired, went to OT and promptly fell asleep in the ball pit.

I got the call from his school when I had been sitting at my desk for about eight minutes preparing a class about the notion of the taboo--of that which is (in Fiji) both "unlawful" and "sacred," and also (in Madagascar), "polluted" and "profane"; of that which is disgusting, dirty, classified as "outside" of society and "unthinkable." In Autismland, I suppose you could say we get our noses if not our knees rubbed in vats of this on a dialy basis, both literally (as in my hard landing on a slimey bathroom floor last night) and figuratively (as in Mother Vox's phone-wrangling with the New York City Department of Education about an unexplained and very abrupt change in her daughter's bus pick-up from 7.15 to 6.30am today).

In regard to something that is literally "dirty," "toileting issues" always warrant at least a chapter in autism parent manuals and more than a few books. Charlie has been trained since he was three years old. We did the "potty party intensive method" in which Charlie sat on the toilet all day for a few days (as detailed in books like this). Our ABA therapists--Stella, Arielah, Kristy--all rotated shifts with us and Charlie had a great time, eating a lot of salty foods, drinking a lot of liquids, and doing programs and puzzles on a TV tray. (The bigger feat was for Jim and me, as our St. Paul apartment had one bathroom and when your child is toilet-training all day and can't get off---I digress.)

Ever since, our frequent road trips have resulted in Charlie and me exploring, or trying not to, the full range of public restrooms, like the one in Lakewood thick in what I think was oil grease or the paperless, waterless restroom-in-a-shack down by the Jersey shore where I had to clean up Charlie (who had had an unannounced stomachache) with a few paper napkins that Jim begged the restaurant staff for. My gratitude for the chemical-perfumey scent of packaged diaper wipes we hastily bought at a nearby (bathroomless) convenience store must go down in the history books. Charlie knows where "it" is supposed to go but--especially when he is not in a familiar environment--the message from one part of his body up to his mind and his mouth and voice gets transmitted literally as the act is happening and Jim is saying, "I think I smell something."

I'm always ready to clean up the latest mess (we always keep a pack of diaper wipes and extra pants and underwear in the car). But too often, the taboo smells, the dirt, the disgusting, the polluted, are what our autistic kids are given. Figuratively, and literally.

I mean this in terms of the services and education too many, the majority, of kids with autism get: The untrained staff, dedicated and compassionate but overwhelmed teachers, the so-called "autism experts" who "advise" them and sometimes make things worse, the decisions made in the name of education and done really in service to the bottom line. If we parents don't keep educating ourself by reading books and attending conferences and talks and asking hard questions---"is this really going to help my child? are there measurable results and data to back this treatment up and not just feel-good anecdotes? what are the scientific and/or political and/or theoretical claims behind this treatment?"---we can all too easily subject our children to the unthinkable.

But I also mean the actual places, the facilities, that our kids and that persons with disabilities are "so lucky" to be given by a society that is not interested in the difference that comes with neurodevelopmental and cognitive disability. Do people really think that Charlie "does not notice" the smell in an unkempt restroom? The difference between the nice couch in his aunt's house and the scratchy discard at the afterschool program he used to attend? Warehouse rooms with institutional bathrooms and concrete floors tucked away behind the railroad tracks? One of the earliest conversations one of my first autism mom friends and I had was about how we always made it a point that our boys were nicely dressed in public, in pants without elastic waists and little polo shirts and non-velcro shoes. "It's so important that he looks nice I think," she said.

It is true, Jim and I have thought about Charlie doing the physical work of picking up trash or leaves in a park when he is older. I cherish the idea of Charlie in a public setting working when he is an adult, not shut away doing piecework, as if it is he that "unthinkable, disgusting, taboo" it. It is also true, that his current much-loved school is in a very nice building with well-trained teachers and teaching assistants, and I know it means a lot to Charlie to get to be driven in his little schoolbus up to such a shiney, bright place. What is truly "taboo" is that most kids with autism do not get this, and the shame is on us and on society, which is still stupid enough to think "kids like that don't know the difference."

Charlie awoke (in the little ball pit) to me, the school's directors ("beautiful dreamer," one laughed, kindly), the OT, and two aides smiling at him. He rode back with me over the Pulaski Skyway (my third trip in one day; there would be one more) to Jersey City, sat in an old desk chair to eat some lunch, and endured 45 minutes of a beginning Latin class. After an afternoon resting on the couch at home, he asked to go to a favorite hamburger stand once Jim came home. In the midst of eating some fries, Charlie suddenly knocked them and his cup of water onto the floor. Jim handed me the car keys and Charlie and I exited stage fast while Jim cleaned up.

Charlie was sound asleep by 7pm. "Why did he throw the fries?" coughed Jim, still in the throes of the sickness our symbiotic family has been passing around. "He must have a sore throat. He was eating fries and his throat hurt and he couldn't understand why something he likes so much wasn't giving him the usual enjoyment and, whapp," I shrugged. "I guess the contradiction hurts him--cognitive dissonance."

Like filth on china---like the dirty where it "shouldn't be." Like the taboo it of disability mucking up the niceness of the world.

For sure, what kind of "nice people" would not embrace a boy as fine as Charlie, my little trooper who--in health and in sickness--tries so hard?

Autism Asperger's Children Science Health

Comments

[Squaregirl]

There is a big missing piece that is rarely adressed in the autism community as we think we have no control over it...society's judgement and lack of empathy. If that were to change, so much (although I realize not all) anxiety of a parent of children on the spectrum would dissipate...I am trying to do my part to make professionals understand...I know that parents already do understand and I am grateful for all of your blogs...I have already sent a few colleagues your way...Thank you for stepping out and sharing your own autism reality show...I learn from it everyday, and will do what I can to help other "professionals" learn from it as well...

[gretchen]

What a disappointment when your fries don't comfort like you expect them to!

And I remember when Henry had first started at his preschool, deciding that I needed to cut his hair because his teachers already seemed to think he was the crazy kid. I didn't want him to look the part too, with his wild messy hair.

Did Albert Einstein's mom ever worry about that?

[Estee]

I think about this all the time...I dream about opening up a school where there is a garden and lots of trees...it is true that our enironment shapes who we become. And yes, I believe even those with "severe" disabilities notice.

Estee
http://joyofautism.blogspot.com

[Mothersvox]

What a great post!!! So glad you were prepping cultural anthropology!! You've turned dross to gold, nightsoil to new crops, in your inimitable fashion.

You are inspiring me to write about one of the schools we toured last year as a possible placement for M. I'd put it out of my mind, but I think I have to write about it.

[kyra]

i love the image of beautiful dreamer charlie waking up in the ball pit. yes, who would not embrace this sweet boy?

[Lisa]

I think people are scared to accept the possibility that "a kid like that" deserves the best the world has to offer. Human society is built on ingroups and outgroups, competition and status. If we open our hearts to the "lowest" members, then by our own standards we must open to everyone. We have to drop the pretense of hierarchy and meritocracy that allows us to channel our respect, resources, and attention towards only the "best" and most powerful. Not only is that completely against the ethic in most societies, but it would completely turn the power structure upside down. I look at the Untouchables in India, African slaves in this country, moneylending Jews in Europe. If there's no one to do the "dirty work" or to be the dirty people, then the rest of us have to accept that as part of our human reality.