Re-thinking Autism, One Day at a Time

In the book Uniquely Human: A Different Way of Seeing Autism, author Barry Prizant makes a point about methods of caregiving that just seek to manage behaviors, rather trying to understand the underlying causes for a behavior.
Courtesy of Jamie Pacton

 Autism—the official diagnosis for my 7-year-old son, Liam—has taught me a lot, but no lesson has resonated more than this simple and crucially important one: behavior is communication. My boy is non-verbal, smart, kind, curious, and affectionate. He has interests but very few ways to communicate his likes and dislikes beyond making noises, pulling me places, and a limited use of signs. We are working on using the Rapid Prompting Method (RPM) with him, but he still often gets overwhelmed and frustrated by his inability to communicate. Add a host of sensory issues and GI pain to the mix, and it's no surprise that he has meltdowns. That he acts out. That he sometimes bites or pinches when feeling really frustrated. I'd do the same thing in his shoes, but I struggle sometimes with how to best parent him when he's having a rough time.

Obviously, it's not okay for him to bite me so hard he draws blood or to pinch his brother until he leaves a mark—these are dangerous, unacceptable behaviors for anyone—but I often wonder is it better to try to manage these behaviors through forced compliance or to figure out the causes of his distress and address that?

Consider one recent morning. As we were getting ready to go the park, Liam pinched his brother, started screaming, and then went on to bang his head on the floor and try to bite himself. I pulled him away from his brother, sent him to his room to calm down, and then a few minutes later, went in to talk with him. Eyes red, tears still streaming down his face, he babbled at me, trying to communicate what was wrong. I grabbed the letter board to try to ask him, but he didn't spell anything coherent. Throughout all of this, the downstairs neighbors' puppy barked. And barked. And barked.

It was really annoying, and I'm not even sensitive to sounds. But my son is. And the dog's barking coincided with the timing of his meltdown. All at once, I had an "ah-ha!" moment and realized the meltdown was triggered by sensory stress. Liam wasn't trying to act out, but his nerves were fried by waiting on me to get ready and by the barking dog.

This reminded me of an excerpt I read recently from the new book Uniquely Human: A Different Way of Seeing Autism. In the excerpt, author Barry Prizant makes this point about methods of caregiving that just seek to manage behaviors, rather trying to understand the underlying causes for a behavior:

"This way of understanding and supporting people with autism is sorely lacking. It treats the person as a problem to be solved rather than an individual to be understood. It fails to show respect for the individual and ignores that person's perspective and experience. It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.

People with autism, primarily due to underlying neurology (the way the brain's wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges."

This insight is not new—autism self-advocates have been writing along these lines for years—but it's a good reminder when things get rough in the trenches of parenting. Liam's not a problem to be solved. He's a child with a unique perspective on the world and sometimes his anxiety, confusion, and discomfort make him act out. My job as his mom in these moments is to be patient, listen, show empathy, and remember always that my child is not trying to give me a hard time, he's having a hard time.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.comFacebook (Jamie Pacton), and Twitter @jamiepacton

Parents talk about the struggles and triumphs of raising children with Autism. Families work every day to overcome challenges such as communication problems, sensory issues, temper tantrums, and society’s pressure on Autism children. Video courtesy of interactingwithautism.com

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