Well Being

Genes, Activism, and Why We Still Have the Push Mower

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Being the mother of an autistic son who writes a weblog about autism enables one to talk about genes, political activism, and lawn mowers all in one post.

Let me explain.

My May 18th post, Infants and Autism and Education on prenatal genetic testing is included in the June 3rd Gene Genie, a blog carnival on genetics, genes, DNA, and the genome over at Eye on DNA.

clipped from www.eyeondna.com
  • Infants and Autism and Education at Autism Vox

    Kristina Chew looks at diagnosis for autism especially in infants. She would have been interested in prenatal genetic testing for her family so that she’d know what to expect in raising her autistic son Charlie. I suspect, however, that the majority of parents using prenatal genetic diagnosis aren’t doing so to be better prepared to raise a special needs child.

  •   blog it

    Other posts of note are:

    1. ScienceRoll offers 10 Tips on how to search for genetic conditions.
    2. Greg Laden's post, PKU: An exploration of a metabolic disease, notes that “PKU is 100% genetic. And it is 100% environmental” and offers an interesting comparison to questions about the role of genetics and the environment as causes of autism.
    3. A list of the Top 10 ways DNA technology will change your life on HealthNex by guestblogger Hsien-Hsien Lei.

    Hsien, who writes Eye on DNA and is a biotech consultant, invited me to write Autism Vox after reading my original weblog about my son Charlie, My Son Has Autism for the b5 media Science and Health channel. (Hsien no longer blogs for b5media; her new blog Eye on DNA is a must-read if you'd like to find out what impact the latest developments and discoveries about genes might have on science, health, and culture.) When Hsien asked me to write for the Science and Health channel my first thought was, I can't do that, I'm no scientist (as I am not; I am a literary critic and a classics professor), I'm just a mom. I can write about education and autism advocacy, I wrote to Hsien, and she said that would be great.

    But a funny thing happened as I wrote more and more on Autism Vox, read about genes and health at Hsien's former blog, Genetics and Health, and started to follow her links other science blogs: I started to find myself interested, more and more, in writing about science and autism. There is much that I do not understand and have to consult others (Hsien included) about, and I am grateful for readers who are scientists and provide information and discussion to my posts (and corrections when I err—these are especially appreciated!). Prior to writing Autism Vox, I chose to limit my reading about science and autism to nothing more than seemed directly applicable to Charlie's medical and other needs.

    At this point, I also avoided writing too much about what can be called the politics of autism. Let others debate about the MMR and mercury and whether or not there is an autism epidemic; it seemed best to use phrases such as “genetic predisposition” and “environmental trigger” whenever I had to offer an opinion about the causes of autism. It seemed best, perhaps because less taxing on my thoughts, to leave the autism activism to others.

    But like I said, a funny thing happened as I wrote more and more on Autism Vox. Writing more about science—knowing more about the science of autism—led me to see how science is intertwined in the politics of autism, be they about the environment or about new studies on genes for autism. And as a parent, it is crucial to know about the science of autism, even if only to understand why, when it comes to “science” and autism, one has to be wary of junk science and of so-called experts in areas in which they are not. And trying to foster understanding in other parents of autistic children and in “the general public” about science and education and how politics can influence both of these, is something I try to do here.

    I've been grateful—-I have been downright fortunate—to have been a part of a committed and knowledgeable blog community, about science and medicine and health, and about autism thanks to the Autism Hub. In the past few days there has been some dispute and debate on the Autism Hub about the role of non-autistic bloggers about autism, in which category I include myself. Autism advocacy should be led by autistics (as I'm in agreement with); what, then, is the specific role of a parent's perspective? One blogger, Larry Arnold, has resigned from the community of the Autism Hub: Who speaks for autism? And there are also the many parents I know who blog to seek support and share stories of life raising an autistic child; who, as sister autism mom-blogger Mom-NOS puts it, prefer to mow their own lawn.

    For myself, I enjoy the debates because I learn from them. I try, to what extent I can, to combine “autism mom-blogging” with “autism activism” which, to me, also means keeping myself informed about all things autism, from science to IDEA to autism lit. For me, mothering an autistic child means I'm “activism-ing for autism” when Charlie and I are in the checkout line at the grocery store and the customer behind us looks at their watch and sighs because, due to my asking Charlie to put the items in the shopping basket onto the conveyor belt, this process is taking a rather long time. (Today, for instance, Charlie was so engrossed in poking a watermelon through the saran and examining a jar of relish that I had to repeat my requests a few times.) I am ever grateful for the blogging communities I am part of, because there is another community out there, in the grocery stores and on the streets and in every public place, who has never heard of neurodiversity, equates autism with mental retardation, and averts their eyes in the face of a not a very verbal half-Asian 10-year-old.

    To refer to a comment I left on Mom-NOS's blog regarding the mowing: There is a push-mower in the backyard shed that one day we'll teach Charlie to use to mow the lawn. I know that one day Charlie will be more than able to mow his own lawn, to represent himself. And it's Jim's and my work to teach him how to position the mower on the grass, to seek other ways besides large doses of chemicals to fertilize the lawn, and to let him know when a tree root or rock is on the horizon.