Monday, January 17, 2011

Autism and Mother-Blame

Amy Tuteur, MD
skepticalob.blogspot.com
www.askdramy.com

On the surface, the old idea of the "refrigerator mother" causing autism and the new quack idea of vaccines causing autism might appear to have little in common. However, as Dr. Michael Fitzpatrick notes, they both rest on the same deeply flawed belief: it is the mother (through her emotional response or her actions) who causes autism in her child and it is the mother (through her emotional response or her actions) who has the power to prevent autism.

Fitzpatrick is the author of Defeating Autism: A Damaging Delusion, a physician and the parent of an autistic child. He writes bitingly about the quackery in the "crusade against autism." Jenny McCarthy is an obvious target:
In the foreword to Louder Than Words: A Mother's Journey Into Healing Autism, Jenny McCarthy is described as the 'polar opposite' of the 'refrigerator mom', the quasi-demonic figure blamed by a generation of postwar American psychotherapists for causing autism.

Yet the concept of the 'warrior mom,' as McCarthy presents herself in her latest book, is not so much the polar opposite of the 'refrigerator mother' as a distorted mirror image. The 'warrior mom' is yet another reflection of the culture of mother-blaming and a manifestation of the burden of guilt carried by parents as a result of the influence of pseudoscientific speculations about the causes of autism.
Fitzpatrick elaborates:
The 'refrigerator mother' and the 'warrior mom' are linked through the decades by feelings of guilt, anger and blame. In Mother Warriors, McCarthy tells of a cathartic moment when her therapist tells her that 'you have never dealt with the fact that you feel guilty for Evan's autism'... When the guilt subsides, the rage takes over. Drying her tears, as she puts it, 'I decided I had to go and kick some ass in the paediatric world'. Blaming themselves, blaming their doctors, blaming the world, 'warrior moms' carry the burden of both causing and curing their children’s autism.
The idea that mother's are responsible for causing autism and curing it share important themes. First, it rests on the notion that the cause of autism is environmental and therefore easily modified. The role of genetics, which is almost certainly the primary cause of autism, is ignored:
Then it was toxic parents; today it is alleged environmental toxins (such as vaccines containing traces of mercury or MMR) to which parents have exposed their children. These theories also have the common features that they are entirely speculative and lacking in scientific support.
Second, autism, rather than being recognized as a feature of the child, is portrayed as something that attacks, hides or traps the "true" child.
... The Empty Fortress was the title of [psychotherapist Bruno] Bettelheim's book and his characterisation of the imprisoned self of the autistic child (notoriously compared with a prisoner in a concentration camp) that had to be liberated through psychotherapy. 'My son is trapped inside this label called autism, and I'm gonna get him out', declares McCarthy in Mother Warriors...
The concept that autism is an intrinsic feature of the child is rejected for the more acceptable fantasy that autism is something that happened to the "real" child, and can therefore be prevented or reversed by simple modifications of the environment.

This fantasy dovetails nicely with the dominant contemporary mothering ideology that positions mothers as risk managers who "educate" themselves (about pregnancy, birth, vaccination, food, etc.) for the project of creating the perfect child. The child thus produced simultaneously reflects the mother's competence, and advertises the mother's superiority among her peers.

The autistic child, in many ways viewed by our society as the ultimate imperfect child, is a visible sign of parental failure. The desperation to avoid the stigma of this failure leaves mothers of autistic children particularly vulnerable to quacks and charlatans (like Jenny McCarthy) peddling pseudo-scientific theories of autism's cause, its prevention and its treatment.

Autism almost certainly has a genetic basis and discovery of that basis should prove liberating for both autistic children and their mothers. Purveyors of the faulty idea of the "refrigerator mother" taught women to blame themselves for their children's autism. Charlatans like Jenny McCarthy continue to encourage mothers of autistic children to blame themselves, not for their purported emotional frigidity, but for their purported negligence in failing to "educate" themselves about vaccination and failing to "protect" their children from vaccinations.

This mother-blame has got to stop. There are more than enough things for mothers to feel guilty about. Autism should not be one of them.

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A version of this essay originally appeared at The Skeptical OB: http://skepticalob.blogspot.com