We Need To Get Beyond the Blame

First we blamed ourselves for causing autism, courtesy of Bruno Bettelheim and the refrigerator mother theory of autism.

Then we blamed vaccines (the MMR) and the mercury in the vaccines for causing autism.

After all, as an article in yesterday’s Chicago Tribune by Meg McSherry Breslin, Painful questions of blame: Parents, doctors and the disputed link between vaccines and autism, autism is such a terrible “disorder” to “manage” that who would not want to cure their child of it?

Ms. Breslin highlights the often opposing views about autism between parents and the medical profession and writes that

Some who knew [Dr. Karen] McCarron through her work with an autism support group say the physician blamed herself for allowing her daughter [Katherine McCarron] to be vaccinated, and feared that the available remedies wouldn’t make enough of an improvement to her daughter’s quality of life. Others suggest that perhaps working among other doctors skeptical of the vaccine connection created an emotional tug of war for McCarron.

It is suggested, that is, that Karen McCarron did what autism mothers of the previous generation did: She blamed herself for “causing” her daughter’s being autistic, with more than tragic results.

Where we once blamed an “internal agent”—ourselves, us autism parents—-for causing autism, many parents (not this one or some others) now believe that an “external agent”—-mercury, environmental pollution, and more—has caused their child to “become” autistic. After all, who would want to the cause of this “disorder,” the toughest cases of which

can be harrowing for parents, some of whom have to watch their children constantly for fear they will jump in front of a car, bang their head against a wall, or lash out at others. Some parents describe the most extreme cases as being like having a hyperactive 2-year-old who never grows out of his impulsive, risky behaviors. ( Painful questions of blame, Chicago Tribune)

My son Charlie qualifies as one of those “toughest cases.” Only a day ago my neighbors heard me screaming his name when a minor car accident happened in front of the house (Charlie was on the sidewalk and I was on the porch, but one always worries). Charlie head-bangs, and numerous walls of our house have been patched with stucco. Charlie has hit and bit. Charlie is highly teachable, loves school, and has thrived in an intensive ABA (applied behavior analysis) educational program. Charlie is a great kid who does a lot of things that keep my husband and I on constant red alert and that have led to our quitting jobs, spending the equivalent of several years of college tuition on his therapy, and I don’t know what else.

That is to say, we have seen Charlie thrive and learn and grow by not focusing on “why is he autistic” but on “Charlie is autistic and we must look to him first to help him as best we can.” Blame, whether on oneself or on mercury or on air pollution or genes only leads to bitterness; to anger and resentment that one got “stuck” with autism, and a totalizing belief that if autism could be “cured”—if we could just “get rid” of autism—-all would be perfect.

I only put some blame on articles like the Chicago Tribune’s Painful questions of blame for perpetuating stereotypes about the horror and hopelessness of autism. For the past year, I have written about the bike-riding and the head-banging and the learning to read of my autistic boy, Charlie, on Autismland, to be a witness to all the hope that is out there. There is so much we can do, so much Charlie does, if we can stop pointing the finger at this or that theory as the cause of autism.

It we can only stop the blame and teach and take joy in and learn from lovely kids like Charlie and Katie McCarron and from the words of autistic writers like Ballastexistenz, then maybe we can get beyond the blame.