EARLI Study, Eugenics, and Acceptance

One of my first cousins recently had a baby and has been sending me photos regularly, quite to my delight. (Especially as, I remember babysitting for my cousin when he was a baby.) I recently sent off a bunch of Charlie's old board books to the baby and was very happy to know that they were well received. I told my cousin that we'd love to send more---we have quite a store still of board books, picture books, and the like. We had saved all the books assuming, hoping, that Charlie might someday read them. We remain hopeful that he'll read more than a few words someday; in the meantime, it's not like there's a shortage of books or printed matter in our house.

We decided a long time ago that Charlie would be our only child. Jim and I had never planned on having a lot of children and, from an early point, it was clear that Charlie was going to need a lot of care. It's true, sometimes it seems that Charlie having a sibling would be a great thing for all of us: He'd have another child to get to know and to be around when he is older and we are not. On the other hand, while one hears plenty of heartwarming and loving stories about and by siblings (just heard about this new book, for instance), one knows it can't have been easy on everyone (as described by Karl Greenfeld in his new book, Boy Alone). I think of all the times we've moved for the sake of Charlie's education: How would another child have felt to hear that he or she'd have to move into their grandparents' basement in a week, just so Charlie could go to school?

As long as Charlie has been diagnosed, we've also been aware (been told) about the increased likelihood of us having another child on the autism spectrum. Charlie still needs one-on-one care and we don't expect that to change: If he had a sibling, it's pretty likely that he'd have some extra-harried parents (and I would have had to quit my job, which would have had obvious repercussions, financial and otherwise).

There's a new study being undertaken, the EARLI Study, with EARLI standing for "Early Autism Risk Longitudinal Investigation." Researchers are currently seeking 1200 women who already have a child with an autism spectrum diagnosis, and who are thinking of becoming pregnant, or who is less than 20 weeks pregnant (and who live in one of the study areas).

Blood and urine will be collected and, when a baby is born, samples will be taken from the umbilical cord; the placenta, which supplies babies with nutrients and oxygen during pregnancy; and meconium (baby's first stools). These samples will be analyzed to investigate:

(1) How environmental exposures during pregnancy and early life might play a role in the development of an Autism Spectrum Disorder
(2) How genetics may influence risk of Autism Spectrum Disorders – especially how genetic make-up might make certain children more vulnerable to environmental exposures
(3)Whether there are biological markers (for example, things we can easily measure in blood or urine) that will predict whether a baby eventually develops an Autism Spectrum Disorder
(4) How the behavior of newborn siblings of children with an Autism Spectrum Disorder changes over time and what behaviors might be early signs of an Autism Spectrum Disorder

Dr. Craig Newschaffer, a department chair at the Drexel University School of Public Health in Philadelphia, is the principal investigator.

The EARLI study has been written up in the June 9th Wall Street Journal and elsewhere, though no one's really acknowledge a potentially controversial aspect of this study. The EARLI website notes that one of its goals is to "better understand the causes of autism so that we can one day more effectively treat or prevent this challenging disorder."

Finding any biomarkers points towards some sort of prenatal test for autism. Such a test is viewed with a great deal of suspicion due to concerns about eugenics and people choosing not to have a child whom they know will have a disability. Tricky, and very muddy, waters here. I know that we would have had Charlie regardless of whatever we learned from any prenatal test, but people are going to make the decisions they have to make based on their circumstances, and then they have to live with them.

In our case, Jim and I are well aware of our own family histories, not to mention our own issues/diagnoses/"stuff," so it's not like we weren't thinking we'd have a child without "something." And I think with that knowledge, we've long known that we'd be ok with "whatever" a child of ours had, however "different" from us he might be. As Charlie's parents, it's become our vocation to change ourselves to best help him learn and grow, to have a good life.

And, I'm also looking forward to watching my cousin's little baby grow up and will be glad to send books out to California to years to come.