On the soapbox

Like parents everywhere, I want the best for my children. Figuring out what is "the best " is one of the challenges of parenthood, and I believe that every family has to find its own path to that destination.

For my children, it means being given opportunities to learn, grow and excel. It means fostering healthy relationships. It means caring for others and for the world, and acting accordingly.

Sometimes -- often -- it means guiding behavior to fit particular situations. We don't run around at the grocery store. We don't hit each other. And we don't engage in stereotypical autistic behaviors when we are fully aware of alternatives and are capable of choosing them.

This is sacrilege to some members of the autism community. Champions of neurodiversity do good work educating and informing the general population about differences, but go too far when they decry parents who prefer to work toward behavioral indistinguishability for their children with autism.

Abby and Brian have diagnoses of PDD-NOS, which stands for Pervasive Developmental Disorder - Not Otherwise Specified. Pervasive Developmental Disorder is the technical name for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition -- the "Bible" of psychiatric diagnoses. "NOS" is a common catch-all label in the DSM-IV, and is typically used to provide a diagnosis for people whose conditions do not meet all the criteria of the full diagnosis.

My kids' diagnoses of PDD-NOS mean that they meet some of the criteria for autism, but not all. It could also mean that they meet the categories of criteria, but not with sufficient severity to merit the "full" diagnosis.

Regardless of the label, there are definite differences, but perhaps my insistence on working toward indistinguishability is because, on the grand scale, their conditions are on the milder end of the spectrum than those who have the "full" diagnosis.

In other words, my kids are almost typical, but not quite.

Because they're this close, I'm passionate about helping them bridge the gap. (This should not be read to mean that I think parents whose children are more severely affected by autism spectrum disorders are less passionate about helping their own kids.) So I worked intensely with Abby when she was four years old to correct her pronoun reversals. I cue her to put her hands down sometimes. I remind Brian to look at me during conversations. I rehearse social interactions with both of them, and prepare them for playdates and changes in schedule.

Lest the neurodiversitists think I'm quashing my kids' personalities, I'll also mention that I try to understand their needs and honor them as much as I can. For example, I respect Abby's need for time by herself -- now that she can tell me when she needs it, rather than starting by hand-flapping, quickly moving into flailing and ultimately having a meltdown. How did she learn to verbalize that need? Therapy. Practice. Lots of hard work. But now she has that tool in her toolbox. And she's one step closer to indistinguishability.

There is nothing wrong with teaching children to get their needs met in a way that more people would consider "typical."

As my children get older, my views on this subject may change. And I certainly do not have a problem with parents who feel differently than I do. But I do have a problem with being told my way is categorically wrong. Especially when it's working.