Genetics Interview #16: Dr. Kristina Chew of Autism Vox

Autism is one of the most complicated disorders in all respects from diagnosis to treatment. Today, I have the privilege of interviewing Dr. Kristina Chew, the mother of an autistic son, Charlie, a professor of ancient Greek and Latin, and writer of Autism Vox, THE blog to read for autism advocates.

1. As a classics professor, how do you view genetics?

The first thing that comes to mind is two ancient Greek and Roman words. The ancient Greek word _gignomai_ is cognate with “genetics” (one form of _gignomai_ is _genomenos_); this word means to “become, come into being, happen, be born” and is the root of such words as “genesis” and “generation” as well as “genetics” and “gene.” The Latin word _genus_, which means “kind, race,” is cognate with _gignomai_ (hope you are all following this etymological path!). So, when I think of “genetics” in terms of the word’s etymological origins, I think of something having to do with fundamentals, with what we are born with.

The second thing that comes to mind is ancient medicine. I have started to do some of my own research into writers such as Hippocrates (whom we know through the “Hippocratic oath”; a collection of medical texts called the “Hippocratic writings” have come down to us, but were probably not all written by one author). Ancient heories of conception and birth are quite fascinating to me—-one theory is that the male provides all the seed and the mother is a mere “greenhouse”—- (stop laughing)—-Hippocrates and the philosopher Aristotle also write about the influence of the elements and of the four humors on the developing “seed.” So ancient authors were clearly fascinated by the same topics as us, but their mechanisms and methodology for studying these were not the same—no microscopes, petri dishes, electricity…..

2. You write two popular blogs about autism and have said that genetic testing are “fightin’ words.” Can you tell us more about the view of genetic testing in the autism community?

I’m flattered at your use of the word “popular” (Hsien, you _are_ my blog-mentor!) For autistic adults, the very term “genetic testing” is synonymous with “eugenic abortion”—-with something akin to a Holocaust. The presumption is that, if expecting knew that their child would be autistic, the vast majority of parents would abort their autistic fetuses. (I do not have the statistics, but my sense is that there is a correlation between prenatal testing for Down’s syndrome and fewer children born with Down’s; if I am wrong, I am glad to stand corrected.)

My (very personal) feelings about this issue are that, first, if I knew I were going to have a child with autism or Down’s, I would still have the child. I would welcome the opportunity to know as soon as possible that my child would be autistic, in order to get started on finding out as much as I might about autism, about how best to educate and help a child born with a disability. Second, I think the view that a genetic testing for autism is equivalent to eugenic abortion points to a need to increase understanding of what autism is, and of what life with an autistic child is: it is different, it is not easy, it is better than one can imagine.

Finally, my sense is that some parents are leery of the notion that autism is genetic because this would mean that they are “responsible” for their child’s autism—and this very statement seems almost too close to the outdated and discredited “refrigerator mother” theory of autism promulgated by Bruno Bettelheim in the 1960s.

3. Via both our blogs, we experienced some confusion over genetic tests offered by the Baylor Medical Genetics Labs. How well would you say the general public understands the difference between genetic testing as an adjunct to treatment vs. prenatal testing?

I would say, not so well! Accordingly, we all need more education and understanding about genetics in our everyday lives (and, of course, your Genetics and Health blog provides a worthy example of this).

4. How is the idea that autism may be partly inherited received by the autism community?

I guess I referred to this in my answer to #2—-I would add, I have wondered if discomfort with the notion that autism may be partly inherited may be one of the reasons that many seek an “external” cause for their child’s becoming autism, such as vaccines, mercury poisoning, or pollution. Despite so many attempts to raise awareness about autism, the general public’s perception of autism is still that it is “devastating,” a “tragedy,” something to feel shame about.

5. Are you looking forward to the genome revolution? If you could make one wish, what would you wish genetic technology could do for us in the 21st century?

Huge questions! We are already _in_ the genome revolution, are we not——and if we are, it behooves us all the more to be informed and educated about genetics and our lives and health. In regard to autism, I would say that my wish for what genetic technology might do for us in the 21st century is to provide more information about autism and what it is and how it is caused. I am not interested in finding out about this information in the hope of “curing” autism, or of my own son no longer being autistic. I do not think it is possible to be “cured” of autism—-this is an inflammatory statement, in some autism circles—I believe that Charlie was born, was always different, and love him for and as he is.

So many efforts and energy are spent in finding out the “cause of autism” that, I think, we too often forget to focus on the children, the people, who are autistic, right now, and on what they need, right now. They need the best possible education and services; they need real understanding. My son Charlie will need care throughout his life and I am everyday concerned about where he will live out his days as an adult, after I am gone. If genetic technology can provide some surer answers about the causes of autism, I hope that we can begin to focus on autistic persons, on what they need, on who they are.

I hesitate to say that Kristina is amazing even though she is, because parents of special needs children don’t always think they deserve a medal or even a pat on the back. They do what all parents do – love their children unconditionally. And Kristina really really loves Charlie.

Technorati Tags: genetics, genes, dna, autism, autistic, autism spectrum disorder, autism vox, autismland, disease, illness, health