recovery

…

The other day, a dear blog friend who I admire and adore left a very sweet and encouraging comment on a post that I had written detailing Kendall’s progress. Contained within her comment were the following words:

“Look at that recovery in only 3 years”

I was soaring on the back of all of the celebratory comments and supportive e-mails that came in response to the post. But something kept eating at me.

That word. Recovery.

It just didn’t sit right. It gnawed at me. I looked it up.

The first entry I found had three distinct definitions.

return to an original state; “the recovery of the forest after the fire was surprisingly rapid”

convalescence: gradual healing (through rest) after sickness or injury

the act of regaining or saving something lost (or in danger of becoming lost)

The first two just didn’t feel right.

According to these definitions, to call Kendall’s progress ‘recovery’ makes an intrinsic assumption that she has suffered an injury or that she is currently in a different state from the one in which she was born.

While I do believe that it is entirely possible that Kendall had a genetic predisposition that essentially made her physiology a loaded gun whose trigger was pulled by thimerosol (whew, say that three times fast), I am not willing to say that I KNOW that to be the case.

I do not doubt for a moment that many, many children (and adults – I really have to stop focusing on children alone) came upon their current situation in exactly that way or similarly. The stories of vaccine regression and other environmental triggers (or co-morbid, likely causal disorders such as epilepsy) cannot be dismissed and deserve far, far more investigation and mainstream attention than they have so far received.

But I think that functioning under the assumption that autism is only caused by environmental factors does a substantial disservice to the scores upon scores of people whose autism may well be genetic. I am convinced that folks essentially arrive at very similar places – similar enough to share the characteristics that form the criteria for an ASD diagnosis – by many, many different paths.

I am also convinced that this is precisely what makes finding answers to many of our most pressing questions so agonizingly difficult. Just as each of our children are different, so very well may be the pathology of their disorders.

When I check off boxes at the neuropsych’s office, I can’t help but notice the overwhelming number of yeses in the ‘mood disorder’ column. My family’s history of mental illness is inescapable. I find it hard to believe that it did not somehow contribute to Kendall’s autism – particularly the anxiety component.

And so it is that when I think ‘recovery’ I wonder if there’s necessarily (speaking about Kendall alone) anything to recover from.

And so, if it were the case that Kendall had indeed been born with autism, then application of the first two definitions above must be dismissed out of hand.

For purposes of illustration, let’s say Kendall had been born with club feet that made it impossible for her to walk. (This is obviously an imperfect analogy, representing only her challenges, but bear with me). A report written when she was three might read, ‘child shows a marked lack of ability to walk. She makes no attempt to stand upright or to propel herself toward those around her.’

An examiner would likely conclude that she was making no attempt to walk. Her parents, however might see a little girl who wants desperately to walk but who has to have some level of accommodation in order to learn to stand first.

Following the example through, let’s say that over the next three years her family worked to give her some tools to compensate for the challenges presented by the shape of her feet. Let’s say that after three years she had nearly mastered walking with the support of crutches and with specially designed shoes with built-in orthotics.

At six, I might well be able to snap a picture of her walking. The camera may capture the crutches (perhaps hands clamped down over ears, a hood scrunched down tightly, an iPod). It may not. Has that child ‘recovered’ from her club feet because she now has the tools to be able to walk?

I don’t want to get stuck on this. I am beyond thrilled about Kendall’s progress and I don’t ever want to take anything away from it or her or all the work that we’ve all done to get where she is.

But maybe that’s exactly it. Maybe I feel like calling it a ‘recovery’ takes something away from her. Going back to the club foot analogy – to say, ‘Wow, that’s great. You can walk. You’ve ‘recovered’ from your club feet!’ – well, it just isn’t so. Has she suddenly woken up one day with fully developed feet? No. No doubt that would have made things a whole lot easier, or at the very least a whole lot different, but it just wasn’t the case. Has she undergone some kind of treatment to change her feet? No. She has found ways to make her feet, different as they are, challenging as they might be, work for her. She designed shoes, strengthened her toes perhaps, maybe worked on balance and flexibility. But her feet are exactly what they were before.

Kendall has autism. She has always been relatively lightly affected by it. (What’s not relative?) But you can’t miss that she has it. She has sensory processing disorder. She has a language disorder. She has a pervasive anxiety disorder. She also has many, many tools to help her mitigate those challenges.

I think of all the newcomers who read my blog – those who are just fumbling through the early days of diagnosis, trying desperately to find a crystal ball that will offer them some idea of where they are headed. I think of them reading that Kendall is ‘recovering’ and I worry that they may see those words and believe if they ‘work hard enough’ and find the ‘right’ therapies and / or biomedical interventions their child will be autism-free. They might. They very well might. I hope to God they will. But they also might not. And it’s for latter that I make the distinction. Because I want them to know that ‘recovery’ may not be the only version of success.

I don’t want to extinguish hope – ever. Quite the opposite, I assure you. I know there are kids out there who do, through one means or another become free of the challenges of autism. I could not be happier to read their stories. We walk and we talk and we raise money to try to come to a place where that can be a real, viable, affordable, widely available possibility.

But many of them don’t reach that place. Many of them take a different route. Many - like Kendall – progress. Their progress is measured in widely varying degrees, no doubt. Kendall’s progress inspires me every day. Little steps lead to quantum leaps. Pulling the lens out three years, it is nothing short of staggering to see how far she’s come.

But that progress is not OUT of autism. Rather, it has has been through and around and over and under -and sometimes even aided by – her autism. Over time she collects more and more of those tools that ease her challenges and leverage her strengths.

Bottom line, she is kicking @ss. Autism and all.

Oh and the third definition? Maybe a little.