Applied Behavior Analysis—ABA—has been the core of my son Charlie‘s education ever since we started a home program for him in September 1999 in our living room in St. Paul, Minnesota, with a young consultant and lead therapist, a speech therapist in her first year of graduate school, and four college students (none of whom had any previous experience working with autistic children). The classroom in which Charlie has been thriving follows ABA principles closely, with speech therapy, OT, lots of sensory reinforcement, lots of talking, and P.E. carefully integrated. And so I was curious to read the “hundreds of emails” that Autism Speaks received in response to its query about “‘What Do You Think’ About ABA Therapy?”.
This one from Ann Naffier stood out.
ABA has worked well for my child, but not in the way I thought it would. ABA, when it fails to “recover” a child, can lead to a second round of shattered hopes and dreams. However, once I got over the shattering, I was able to recognize the good that our ABA program had done. No, my child doesn’t converse spontaneously, but he is very good at making his needs and desires known (“I want Star Trek, please!”) I do not believe this would have happened had he not had the ingenious and continuous practice offered by his ABA program.
Like too many autism parents, I have equated “not recovering Charlie from autism” as a sign of my failure to do enough to help him.
And yet—-the notion of “recovery from autism” always rang a bit false and flat in my ears until it simply sounded—as autism mother Cammie McGovern wrote today in Autism’s Parent Trap—like some mythological concept. Like some autism fiction and here before me, pulling on his pajamas with shower water dripping off his legs (“This is how you dry off, Cholly”; “Dwwy offf! Towel on!”) or being gently reminded not to say “I want ginger” when he really wants to eat more frozen peas and carrots, here before me is my lovely boy, who needs my attention and who needs to be taught where he is so that he can move on and have that “good life.”
Jim and I wake up every day with one goal in mind, to maximize our and others’ efforts to help Charlie learn as much as he can, and to know that just trying—just showing us that he is trying—is more than enough.
Living in Autismland has come to mean not an endless recovery effort, but simply endless efforts to teach Charlie, and endless good times with our sweet, big-hearted boy.
I reiterate: Living with Charlie has come to mean not an endless recovery effort, but simply endless efforts to teach him, however long it takes to learn any particular skill (like reading). A life lived with Charlie can’t be long enough.