At a Loss for Words

A mother's tale of her son and autism

A Different Way of Being
Wed., Jan. 25, 2006

It's been a little over a year since Corin was diagnosed with autism. He was 3 years old at the time. I was pregnant with our second child, and the last thing I expected was news that our son was developmentally delayed.

It hit us like a rush of cold water, a flood of emotion that has kept a hold of us since then, and drives us forward against a ticking clock.

My husband and I aren't sure when the telltale behaviors started appearing. From time to time, I take out our family photo album and flip through the pages, looking for some sort of sign that we missed at the time. But, all I see is a smiling boy digging his hands in a chocolate birthday cake, hugging his father, and looking straight into the camera and into the world.

In retrospect, Corin's autism became physically apparent around 30 months old: hand flapping, spinning, an obsession with long sticks and flags, and lining up his cars. He stopped talking, and became frustrated, uncontrollable, scatting verbally. His diet grew limited, and he would only eat apples, pears, salad, and French fries.

My sister-in-law tells me that I confided in her that I was concerned about these things, but I don't remember that. I do know that I had to face that something was wrong when I visited a sibling who had recently adopted an 18 month-old with speech delays. Well, that child spoke circles around Corin, and when I got home my husband and I had a huge fight about his health. He credits that argument as the moment when he understood that something was wrong with Corin, and that we could no longer kid ourselves.

Not knowing where to turn, I got online and typed in "Oregon" and "autism" into a search engine. Among the results was the county's early childhood education program. When I called, I was asked a number of questions about Corin's behavior that I answered honestly, hoping that the intake person would say, "Well, it doesn't sound like autism to me," but she never said that. Instead, we were scheduled for a meeting with an assessment team.

Corin's diagnosis came Thanksgiving week, right before we left for vacation. We arrived early for the assessment meeting, and filled out several questionnaires that asked us to review his development. Then, we were asked back into a room that was lined with toys, and various professionals (speech language pathologist, occupational therapist, autism specialist) came in to observe Corin as he played with toys and interacted with them.

Officially, he was diagnosed as severely autistic, with the verbal skills of a 12-month old. His tendency to lean on people was attributed as sensory seeking behavior, as was his flapping and other self-stimulatory behavior.

Terms were thrown out: "sensory diet," "stimming," "neurotypical peers," "STARS curriculum," nothing we understood but wrote down anyway.

My husband and I drove back to work, completely wrecked, crying in the car. Corin was sitting in the backseat, looking out the window and shaking his legs with excitement at a trip in the car.

Waiting for Preschool
Mon., Jan. 30, 2006

I'm reading, reading, and reading anything I can get my hands on from the library. My husband goes to Powell's, a local bookstore, and sits in its coffee shop looking through the shelves.

Among the first books I got is one that discusses applied behavioral analysis, a therapy that has had clinical success with young children. As I understood it, ABA breaks down learning into little tasks that a child masters step by step, eventually mastering the target for learning. It is intensive -- up to 40 hours a week -- and insurance companies consider it experimental, so they don't pay for it. I could find only a few references to ABA in Portland, Oregon, including one local group.

I checked out their web site, and ordered every book on their recommended reading list from the library. Most times it's the stories about children who have recovered that draw me in; I can't put them down. No child has the exact same autism symptoms that Corin has, of course, but I am motivated by the stories about the children who were afraid of being touched, and later recover.

The "how-to" handbooks depress me. Surely I won't have to teach Corin how to wave bye-bye? But I'm reminded that he has never done this, nor made eye contact with the person leaving.

In several of the books, the author was also pregnant when her child was diagnosed. I'm already in the second trimester, and I've hardly paid any notice to this baby. With Corin, I was constantly in awe of how my body was changing, and eager to experience it. We'd waited several years after he was born to start trying again, and it didn't take us very long at all -- we're fertile people, I guess! Now, I wonder if we're in way deep over our heads than we could have ever imagined.

In the meantime, we count the days during Thanksgiving break until Corin's special education preschool class starts. The teacher made an exception and let him join before the winter holidays. We're hopeful, but it's so little class time, only four mornings a week. He will be seen by a speech and language pathologist, for 20 minutes twice a month, and an occupational therapist once a month.

But how can this be enough? Didn't I read something about "free and appropriate education" in the special education literature we were given? My gut told me that this wasn't enough. They didn't have much to say when I asked whether the work they did with him one-on-one was based on ABA principles.

Corin cries when we turn onto the street where the center is, and sobs walking into the lobby. Every day for two weeks it grows a little less intense, and the classroom staff is nice and wants to help him get settled. His favorite activity is the indoor gym, and he's an old pro at the slide.