Courage and Change; or, The Dangers of Autism Ideology (#269)

“We think my relative’s son may be autistic,” a student said to me this morning. “Because he didn’t seem to be connecting with other kids.” A conversation about Greek tragedy became threaded with questions of “does he talk?” (“not really”), “how old is he?” (“almost 4”), “Charlie had all these obsessions like a red spot of paint on a play structure and really repetitive play” (“hmmmmm….one thing is, he’s really good at puzzles”), “Charlie was too–he could do one of the 50 states when he was 2 1/2–then he got stuck on that one” (“no, he does lots of different puzzles”).
We talked about the Cyclops–the one-eyed monster in Book 9 of Homer’s Odyssey who eats some of Odysseus’ men when he finds them in his cave, and who Odysseus gets drunk and then blinds with a sharpened stake–and babysitting. “But is the little boy getting any services, I mean like speech?” I asked.

My student said no and I told her I’d email her with some information.

Like Odysseus when he washes up with nothing–not even any clothes on his back–among the kingdom of the Phaikians in Book 6–we autism parents–and, even more, autistic adults–often feel like survivors who, after nearly drowning in the muck and mud, are gifted with the best gift of all, a child who says a sentence, a child who says sorry, a lovely boy.

We’re survivors with a tale that we have to tell, about how we have been on a long journey that began in darkness and is steadily more and more bright (with shadows). A pilgrimage in Autismland.

Often the tale we parents feel we must tell involves the treatments that have helped our child or children. Jim’s and my list includes ABA, gluten-free casein-free diet, VB, speech therapy, anti-fungal therapy, OT, pro-biotic supplements, SSRI’s, neuroleptic/anti-psychotic medication, lots of exercise, PECS, sign language, social stories (here is one extensive list of treatments that is only the melting tip of the iceberg).

[News flash: One autism dad put the back of his head up for sale on eBay to raise funds for his son’s treatment.]

“All children with autism are different, and different children respond to different therapies,” is a phrase I have heard very often. This phrase is certainly true but I often wonder if it further serves to “divide and conquer” our children, and us, from each other; to put the “HFA” here and the “LFA” there (disclaimer: I shiver at the whole concept of “high vs. low functioning”), the “Asperger’s” and the mild on one end and the “severely autistic” on the other. Autism is a spectrum disorder but there is more that joins us together than not.

We can’t let autism ideology stop our helping our child be the best they can be. Must every family reinvent the wheel, if not find a new one, as they try to help their child? If one family has seen a child lose the rosey rash on their cheeks after removing gluten and casein from their diet, or if an autistic adult explains how being overly warm in a jacket caused him to become angry, our children can only benefit from our listening to others’ experience.

Jim and I try always to look at Charlie and cast away (as much as a person, let alone a parent, can) all preconceived beliefs, all philosophy, all “autism ideology.” We try to look at and listen to Charlie as “objectively” as possible, while always knowing that emotion—especially love—can make the best of parental intentions blind. Charlie had a great day at school–mastering programs like patterning–and then, for the first time, a mini-tantrum (over his blanket being still wet from the washing machine) with his babysitter. The flopping to the floor on his back business occurred again when I said I wanted to carry the blanket to the black car. Charlie was “off” at his verbal behavior session, in part due to the other (younger) children’s struggles, and–when I ran upstairs for a minute after cutting an apple up for him and turning on the stove to cook some chicken–had another flop-down moment.

I hurried back down and, very deadpan, put the apple slices on the counter. “I want eat apple,” said Charlie. I made a great show of wiping up the counter and scrubbing my commuter coffee cup. “Eat apple,” said Charlie.

“Let’s take a hot shower because the chicken is still cooking!” I said, with a big smile as if that was the greatest thing since sliced (gluten-free) bread. “Showwer,” said Charlie, and smiled himself, and for the rest of the evening (two drumsticks and two quickly-made spring rolls helped).

Later, Jim and I talked about how Charlie has been doing VB for a year and how maybe it is time for a change. Jim is planning to take Charlie to a drumming-with-dads group for kids with disabilities and we are looking into tae kwon do (a friend’s PDD-NOS son has been earning a belt in this) and piano lessons.

We Autismland folk have to be polytropos, “many turning,” “many changing,” like Odysseus in the first lines of the Odyssey. Things change, Charlie changes, and we have all to move on.

That’s why Socrates said “The unexamined life is not worth living” (Apology 38a).

4 Responses to “Courage and Change; or, The Dangers of Autism Ideology (#269)”
  1. Heidi says:

    I smiled at:

    “Let’s take a hot shower because the chicken is still cooking!” I said, with a big smile as if that was the greatest thing since sliced (gluten-free) bread.

    Because I often find myself “selling” the things we need to do with a smile and sometimes a song and dance (literally). Having a child on the spectrum makes you pick up the art of entertaining fast! 🙂

    Hope you guys have a great weekend.

  2. Eileen says:

    Yes, we all have our own tale to tell to those who we suspect or to the newly diagnosed who come to us for advice. Although I am also not a big fan of the term high functioning, there are those kids that just do fall at the higher end of the spectrum. There are those that it is difficult to tell at an early age whether or not they are even on the spectrum. What term do you prefer? Mild? I am just curious because like Mom-Nos writes in her post today, choice of words do matter. I see a big difference in my son and some other young kids that possibly fall on the spectrum. This doesn’t mean that I feel my son is lower functioning, but he is not showing his abilities in the same way that some of these other kids are. Aspergers, PDD-Nos, whatever we call it, there are many differences in how abilities are presented by individuals on the Autism Spectrum. I am just wondering what words might be best to define some of these more mild children. Is ASD enough? I guess it really doesn’t matter as long as all the children receive the individual help that they require. I also agree that we must always be ready to make a change in what our kids needs are at any time. Thanks for continuing to share, educate and influence me. As I have said in the past, your posts always make me think.

  3. Wade Rankin says:

    It’s enough for me to know that my child is on “the spectrum.” I can’t worry about how he measures up to any other child with ASD, except for specific similarities. Those similarities make it possible to share information as to what works and what doesn’t.

    Great post as always, Kristina.

  4. Anonymous says:

    Kristina, you are absolutley right about getting stuck on the same path with our kids. I love the idea that you have about Charlie doing Tae Kwon Do. I have to remind myself at times that there is more than just ABA and speech out there for Gabe. There is a whole other world that envolves activities outside of therapy. It’s the unknowing that holds me back. Will Gabe like Soccer? Will he scream or really enjoy kicking the ball? Boo used to love to lay down on the feild in the middle of a game at Gabe’s age. So, maybe I worry too much and just need to get out there. Thanks for planting the idea in my head :o)


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