Wednesday, November 2, 2011

Grasping at Straws

For more than fifteen years, ever since Alex was diagnosed with autism, I have spent countless hours researching autism, hoping to find something that will help him. One of the benefits of having been an English major in college is that I developed research skills through a great deal of practice. Moreover, from all the reading I was assigned as a student, I learned to read rapidly and assimilate information. This has been immensely helpful as I’ve done autism research, especially since I don’t have a lot of time for research because of taking care of Alex. Some of the information I’ve found has been useful, and we’ve implemented interventions with Alex after careful consideration and often after running the details past his doctor. The Internet has been a godsend for us because we can easily follow the latest studies on autism. Certainly the most valuable aspect of the Internet has been our ability to connect with other parents of children with autism so that we can share ideas; other parents have frequently been our most valuable resource in knowing what strategies to try with Alex. In addition, I follow medical research in autism, constantly seeking something that could ultimately cure Alex.

Last month, two research studies regarding autism were reported in the national news that I found curious. One of these studies analyzed the facial features of children with autism. [A link to this research can be accessed by clicking here.] According to this research, children with autism have wider eyes, a broader upper face, a shorter middle region of the face (including the nose and cheeks), and a wider mouth and philtrum (the divot between the nose and upper lip). After reading about these findings, I, of course, began studying pictures of Alex to see if he also fit these characteristics. As I scrutinized Alex’s photos, I observed that his eyes are set like Ed’s, and his mouth is identical to mine. If, indeed, both features are wide, he’s inherited them from us. As for his philtrum, I’m guessing it’s like mine; I’ve never actually seen Ed’s philtrum because he’s had a moustache as long as I’ve known him. Maybe Alex’s facial features are not obviously “autistic” because he’s on the high functioning end of the spectrum. The study indicated that the more severe the autism in terms of behavior and language difficulties, the more distinct the facial features in children. While I found this research somewhat intriguing, I soon found myself asking, “What’s the point?” Apparently, the thought behind the research is that knowing when the changes occur in the facial features could help in finding an underlying cause of autism. The author of the study, Dr. Kristina Aldridge, assistant professor of anatomy at the University of Missouri School of Medicine, explains, “Knowing that point in time could lead us to identify a genetic cause, a window of time when the embryo may be susceptible to an environmental factor, or both.” I tend to be skeptical about the value of this research, especially considering the number of children who were typical at birth but then regressed into autism. Moreover, I think that this type of research will not quickly lead to medical interventions that can actually help children who currently have autism, wide eyes and mouth or not.

Another finding regarding anatomical differences in children with autism was reported last week; this one dealt with structural anomalies in lungs. [A link to this article can be accessed by clicking here.] Pediatric pulmonologist Dr. Barbara Stewart of Nemours Children’s Clinic in Pensacola, Florida, documented that she noticed differences in children with autism when she examined their airways with a bronchoscope. In normal lungs, airways branch off the bronchial tubes in random, asymmetrical patterns. However, she discovered that in children with autism, their airways were symmetrical and doubled up into two smaller branches, which she calls “symmetrical doublets.” Despite these unusual structures, the children with autism had normal lung function. Although her findings have not yet been published in a peer-reviewed journal, she believes that these abnormal airways may be the “first anatomical marker” for autism. While these findings are interesting, I wonder how many parents would agree to allow their children to be examined with a bronchoscope. Moreover, I again question the wisdom of spending time and money researching anatomical structures instead of addressing known issues in autism: impaired language and social skills. Rather than grasping at straws by scrutinizing facial widths and airway branches, doctors need to be looking for ways to address anxiety, digestive issues, and impaired detoxification systems common in children with autism. Of course, I’m not a doctor; I’m an English teacher who happens to have a child with autism. However, with autism incidence increasing at rapid rates and a generation of children with autism who will soon be adults, research to address pressing issues must be done. Our children with autism deserve at least that much.

“But ask those who have been around, and they will tell you the truth.” Job 21:29

No comments: