A NOTE FROM THE DOCS
Author: Jonathan Tarbox, PhD, BCBA-D, Director of Research and Development, Center for Autism and Related Disorders
I recently got an email from a woman (I’ll call her Betty) who shared her story with me. She and her husband legally adopted their granddaughter, who has autism. They live in a very rural area, where there are no applied behavior analytic (ABA) services available. They drive her 400 miles per week, so that she can get a few hours of ABA services, and they are doing whatever they can to cobble together something resembling a full-time, intensive ABA program. They are retired – they are supposed to be traveling and playing golf. They are supposed to be relaxing and reflecting on how much they have already accomplished and how they can now finally rest. But that’s not the hand they were dealt. Instead, they have been given the fight of their lives.
But what struck me so much about the email was not how difficult it is for them— I hear that from every family I work with. Autism is a challenge, no matter what your circumstance. What affected me was the matter-of-fact tone of commitment that came across in the message. And then what occurred to me is that they are simply doing a better job than most of us do, when given any challenge, in any culture, or in any walk of life. We all complain a lot, myself included.
Thankfully, many of us are fortunate enough to have the luxury of complaining about mundane things like annoying coworkers or our own feelings. Most of us do not realize how lucky we are. Even folks who have a child on the spectrum sometimes do not appreciate how lucky they are. The fact that we were born in a culture where individuals with autism are no longer locked away, and where we take it for granted that each child has the right to living as independently as possible, is pretty lucky, compared to many parts of the world. Some parents I work with were lucky enough to happen to live in a school district, state, or region where their child’s 30 hour-per-week ABA program is fully funded and their child gets therapy from some of the best clinicians in the country. Betty and her husband would give a limb to give their granddaughter a shot at that. It’s all relative, of course, but Betty’s email reminded me of something that I, and I believe most of us, would do well to remember. We are lucky to have what we have. But appreciating the positive is not enough. It’s what we do with what we have that really counts.
Betty and her husband’s behavior shows what really matters: the commitment to doing whatever it takes. Not thinking about doing it, wanting to do it, intending to do it, worrying about it, complaining about it, nor resenting it. But simply waking up every day and doing the behaviors that need to be done. So, hats off to Betty and her husband, and the thousands of other families of kids on the spectrum, who by simply doing what they do every day, are redefining the word commitment.