Posts Tagged ‘Stereotypes’

The knower of nothing

April 11, 2017

It’s autism awareness month. Are you aware of that?

To build awareness we’ll be fed an endless stream of stereotypes and the myth of a linear autism spectrum by healthcare professionals who should know better and by the media which is clueless. In fact the autism spectrum is much more complicated than can be depicted by a bar chart.

20170314170918129Social media is all lit up with the usual memes and inspiring stories about exceptional autistic kids who are piano prodigies or math geniuses or incredible artists. The key word here is “exceptional,” which does not mean better than the others but is more accurately defined as not typical. One brave mom, so annoyed by all this, was inspired to write a piece called, “My son has the kind of autism no one talks about.”

I get this — we hear too much about the rare kids who are gifted and not nearly enough about the real challenges most autistic kids and parents face. The truth is that most autistic kids, including mine, aren’t exceptional — a high percentage are actually non-verbal. Consider that 70 percent of them will never be able to care for themselves as adults.

In my own writings and talks I have tried my best to maintain a positive outlook while also giving people some eye-openers to reality, and recognizing that my son who turns 13 next week is not like any other autistic child. Yes, he sings with perfect pitch, is a Minecraft genius and runs on the school track and cross-country teams, but he also often has severe behavioral issues.

For example, after causing a major disruption at school during standardized testing recently Harrison acted out violently toward one of the school staff and was escorted to my car by two sheriff’s deputies. I was alarmed and appalled by how out of control his behavior was at school that day, but it is really no different than what I often experience at home.

For autism awareness month, I wrote a cover article for Colorado Country Life magazine about our adventures and challenges on the school running teams. The magazine mails out 227,000 copies throughout the state. In this piece I attempt to balance the realities of failures vs. triumphs. I think both are equally important. In this realm of what I call “Deep Sport” the real victory is in the alchemy of lessons of resilience, patience, humility and empathy into something greater and lasting.

Also this month I was invited by the Raton New Mexico school district to speak at an autism awareness event at the high school there. It was attended by about 60 educators, therapists, parents, students and the school’s baseball team.

One of the messages I tried to convey was that all people, including autistic people, are unique individuals. One person in the audience who read about us in The New York Times asked if I provided some sort of animal therapy here at the ranch. She was not the first person who had this misconception from the article.

I told her no, that I had no answers to anything beyond my own experience with one autistic kid, my own son. I said what I have said about this before — if I had any sort of answers to the autism question there would be a line of parents at my ranch gate and in fact there is nobody there. In my experience this is also true of professionals. If any doctor, psychiatrist, therapist, educator, nutritionist or exorcist had a cure, there would be a long line of people at their office.

To borrow from my friend the mountain yogi Steve Ilg: “I am the knower of nothing.”

Yes, I go to great lengths to involve Harrison in outdoor activities, animals and sports. As much as I would like to believe these experiences are helping him, I have no way of knowing if this is actually true. This isn’t exactly a double-blind study. It’s just what I do. What we do.

This is all I have to share.

After the talk, one of the therapists thanked me, and said that she appreciated my input that there is no concrete solution or specific correct response for any given child in any given situation. “People are always looking to us for the answers, and we don’t really have them.”

Apparently she is doing as a professional what I do as an autism parent — making it up as I go along.

On the way home from Raton we stopped at a store in Trinidad to pick up a few grocery items. During this short shopping excursion I had several problems with Harrison inside the store as he demanded I purchase various junk-food items, clocks, paper plates, a fan, an Amazon gift card. Each time I told him no it was greeted with an outburst and argument.

At the checkout the couple ahead of us kept looking our way as I tried to manage Harrison, a shopping cart and getting the items onto the conveyor. Finally the woman turned and said, “Excuse me, but could you answer a question?”

I said sure, wondering what I was getting myself into.

“Are you the two who were in the San Isabel electric co-op magazine this month?”

Surprised by this seemingly meaningful coincidence, I told her, yes, that’s us.

“I thought so,” she said. “Thank you for writing that. It was very inspiring.”

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