October 28th, 2013
But vaccines were not the sole focus of her autism commentary. And another aspect of her campaign — the “recovery movement” — is equally pernicious, at least for those of us raising children with ASD.
The message is simple: children can recover from autism, and it is the duty of the parents (the Warrior Mothers, specifically) to do everything they can to reach this goal. As incentive, McCarthy and others in the movement (e.g. Generation Rescue and the Autism Research Institute) provide a seemingly endless stream of stories about kids who, through the tireless efforts of their caretakers, recovered, partially or in whole, from the disorder. The lives of these children improved, we are told, because their parents never gave up on them.
I’ve spoken before of the central dilemma in treating autism: because every case is unique, there really isn’t a control group against which to compare the progress of your own child. Even so, many of these recovery stories assert causation: because development Y happened after treatment X was introduced, X led to Y; conversely, if X hadn’t been tried, Y would have never happened.
Parents are urged to adopt these treatments themselves. If there is a positive development after you do so, that just proves its efficacy; if not … well, then, you just haven’t found the right treatment yet. But keep looking. Never give up.
The stories of miraculous recovery are usually billed as “inspirational”, and described as necessary for the parents of children with autism. As McCarthy put it in TIME Magazine, “Hope is the greatest thing for moms of autism … Hope is what gets us out of bed in the morning. I’m on a mission to tell parents that there is a way.”
But the “inspirational” message of the recovery movement — that your child can recover from autism if you try hard enough — has a sinister inverse: it implies that if your child has not recovered from autism, it’s because you did not try hard enough, that you fell short in your role as a Warrior Mother, that “the way” remains somewhere out there but you were just too benighted to find it.
This is not an uncommon sentiment in the autism community, by the way. Here is Lisa Belkin in The New York Times:
There’s nothing wrong with reasonable hope. Parents need to cling to something. I still fervently believe that early intervention is critical. With therapy, 40 to 50 percent of the children who are diagnosed at age 3 gain enough skills to be mainstreamed by 6, though many continue to need special educational and social supports. … [but] It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.”
And Alysia Abbott in Psychology Today:
Andrew Solomon, author of Far from the Tree, an examination of how parents deal with exceptional children (including those with disabilities), notes that autism is unique for the type of burden it puts on parents. “Parents don’t expect to get children with Down syndrome to the point where they no longer have it. With autism, there are enough people who’ve been responsive to therapy that parents almost have a moral obligation to try to help their child to function better.”
What Solomon refers to as the “literature of miracles” puts many parents on a treadmill of trying every possible intervention—even if it’s not scientifically proven, even if it bankrupts the family.
And how many times have you heard an “inspirational” anecdote about someone taking their first steps after being told he would never walk again? The anonymous doctor who “gave up” on the patient is cast as the bad guy in these stories, a fool and, worse, a roadblock on the road to recovery. A real hero, we can assume, would have ignored the evidence and given their patient that great gift of hope, assuring him that he will one day walk again if only he tries hard enough. Better that the patient blame himself if that doesn’t come to pass, I guess, than risk becoming the villain in some future inspirational anecdote.
McCarthy and others in the movement seem to define “hope” as an antonym for “acceptance”. Maybe there’s some truth to that — hope mademy own journey to acceptance more serpentine. But acceptance isn’t a surrender, nor does it prevent a parent from doing all he can to help his child, to ensure that he gains as many life skills as possible. Acceptance is the recognition that autism is an integral part of this person you love, not some invading force against which you must march to war.
Believe it or not I sympathize with Jenny McCarthy, as only one who is also the parent of a special needs child can. I think she is profoundly misguided on her anti-vaccine stance, and believe that her Warrior Mothers rhetoric can be as toxic as it is inspirational, but I assume these are things she sincerely believes and feels compelled to share. The anti-vaccine crusade in particular can be very seductive when your child has been diagnosed, as it offers both an explanation (MMRs) and an enemy to rail again (multinational pharmaceutical companies) at a time when you are longing for both. I don’t begrudge anyone buying into it.
But I no longer wish to be “inspired” when it comes to my son, to be told that a recovery is all but inevitable. As Reinhold Niebuhr observed, you need more than just the courage to change the things you can; you also need the serenity to accept the things you cannot, and the the wisdom to know the difference.