I have just learned from a blog named The Quirk Factor that some guy named Jerry Kartzinel, claiming to be a doctor, has stated the following in the introduction to Jenny McCarthy’s book.
“Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one. It relegates every other “normal” thing to utter insignificance.”
This is an irresponsible and reprehensible statement to make, obviously. It’s not hard to imagine how statements like this in a highly publicized book could lead to an autistic child being institutionalized or worse.
But it is even more reprehensible because it is a complete fabrication. Can Jerry Kartzinel demonstrate his claim is true? I highly doubt it. In fact, let me propose something. If Jerry Kartzinel can successfully demonstrate, by means of peer-reviewed evidence, that his statement is mostly true, autism-specific, and not dependent on parental beliefs, I will publicly apologize to him. If not, I would suggest that he needs to apologize to autistic people and their families.
While there is some evidence that families of autistic children, like families of children with other disabilities, tend to have higher than normal levels of stress, the preponderance of the evidence suggests that these families experience resilience and adaptation by developing positive views on disability.
For example, King et al. (2006) found the following.
“The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.”
Bayat (2007) identified “specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength. “ It then concluded that “a considerable number of families of children with autism display factors of resilience–reporting having become stronger as a result of disability in the family.”
Twoy et al. (2007) revealed “the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD.”
Bristol (1987) had found that poor adaptation in families of autistic children “was predicted by other family stresses, unwarranted maternal self-blame for the handicap, and maternal definition of the handicap as a family catastrophe.”
It is clear from these studies that adaptation improves as parents change their views over time in the direction of a positive attitude toward disability. Self-blame for autism, and viewing autism as a horrible nightmare will tend to make adaptation difficult. From these findings, I would suggest that parents who believe in an “acceptance” or “neurodiversity” type of model are better able to adapt and cope. On the other hand, parents who accept the sort of claim Mr. Kartzinel promotes, ironically, could very well end up as he describes in his statement.