According to her friend, Dr. McCarron was in despair in recent weeks because Katherine’s language had regressed markedly. Every parent of a child on the autism spectrum knows this feeling: I’ve done everything possible; why isn’t he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we’ve set an impossibly high bar that’s left the parents of a half-million autistic children feeling like failures.
I don’t mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message to families: Children are not cured, but they do get better.
And better can be remarkable. At 10, my son is a far cry from the toddler who melted down when the sand was the wrong texture for drizzling. These days he embraces adventure, rides his bike, and repeats any story he tells five or six times. I remember thinking maybe we’d laugh someday at the lengths we went to when we were teaching him language — the flashcards, the drills, the repetitions. Now he’s 10 and talking at last in his own quirky ways, and we don’t laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night’s sleep, a tantrum-free day.
Parents working toward these goals will one day be surprised and delighted by their children’s funny new obsessions, odd fixations, and tentative but extraordinary connections with other children. Being more realistic from the start might make it possible to enjoy the journey and to see it for what it is: helping a child who will always function differently to communicate better and feel less frustrated. To aim for full recovery — for the person your child might have been without autism — is to enter a dangerous emotional landscape. For three children, the disconnect between parental determination and limited progress may have been lethal.
Steve Drake of Not Dead Yet, who passed this along, remarks:
Note – this op-ed is a step in the right direction, given that the author
doesn’t give nearly enough "credit" to specific organizations for their
nightmarish portrayal of autism. She also glosses over the fact that
Karen McCarron spent only two weeks as the primary caregiver of
her autistic daughter – after months of separation – before allegedly
killing her. But it is a step in the right direction. –Steve
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