Jerry Kartzinel and lying about the nature of autism

The following is Kevin Leitch's transcript of the open letter to Dr. Jerry Kartzinel that accompanies the video.

Dear Dr. Kartzinel,


We understand that in the introduction to Jenny McCarthy’s new book on autism, you describe it thusly:
“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..”

As parents of autistic children we would like you to know that we totally reject your characterization of our children and consider the implication of their existence as soulless as dehumanizing and destructive to their development. These are children who are already more likely than their non-autistic peers to be bullied and ostracized. We feel that describing them as soulless will only add to the stigma surrounding autism and the negative perceptions the general public have of autism and autistic people.

We believe that one of the most important things we can do as parents is to raise our children with a sense of their intrinsic value. We believe that it is right to try and plant the seeds of confidence in their young minds. The fact that they are autistic makes this process even more important as they will face characterizations and judgments throughout their lives. We do not believe that describing them as soulless will help in this respect. We cannot help but think in fact that it would be impossible to feel anything other than hurt and insulted by this description.

Further Dr. Kartzinel, we do not accept that our lives as parents of our autistic children are ones that have had the marrow of life relentlessly (or otherwise) sucked out of them. On the contrary, as several studies have shown, many parents of autistic children – and those with other disabilities – come to terms with their new lives. If we may quote from King et al (2006):
“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.”

And from Bayat (2007):
“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.”

And in fact Bristol (1987) found 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.”

As these words have been heard Dr. Kartzinel, you may have wondered who the children are in the images that accompany these words.

These are our children Dr. Kartzinel. As I hope you can see, they are not soulless. They range in medical diagnosis from severe low functioning autism with retardation to high functioning autism but they all share a common set of characteristics.

They have enriched our lives Dr. Kartzinel. They have not sucked the marrow from them.
And they are not soulless Dr. Kartzinel. They are children. We think they are beautiful children undeserving of such a brutal, harsh, inaccurate description.
I hope you can hear us Dr. Kartzinel. I hope you listened.

You can see where Dr. Kartzinel was leaving a space for the family not to have the life sucked out of it. All they have to do is make an appointment with him, they way Jenny did. Anything less would be to leave the child as a some kind of soul-less zombie pod person. It's a kind of emotional blackmail that Kartzinel, with the help of Jenny McCarthy are foisting upon an audience consisting of some people who don't know any better, and who will believe Dr. Kartzinel's version of autism. Why care about helping people who supposed to be "soul-less"?
Why advocate for their inclusion in society and for getting proper education, and why pay for research that is meant to improve their lives? Surely these soulless automata are insensate and don't know good treatment from bad? Why consider their need for shelter and employment, education, recreation and medical care?

This is in fact what many autistic people face now, the reality that precious few people have ever considered what they need for shelter, employment, education, recreation and medical care... just for starters. Some autistic adults are are homeless and hungry, others are in bad housing situations and not getting the basics of what they need and they are certainly among the least able to advocate for themselves in any vaguely social manner. Dr. Kartizel you and your kind make our lives as autistic people and parents of autistic people that much harder.


Please make any comments you'd like to make at Kevin's (group) blog, Left Brain/Right Brain.



Autism Diva
materfamilias