A Whole Lot of Autism To Account For in New Jersey

A March 15th article in the New York Times notes that the New Jersey state assembly is expected to pass seven autism bills today; the bills call for (among other things) early detection of autism in children, the formation of a Task Force on the needs of adults with autism, and financing for the Governor’s Council on Autism. “The legislative package could help cement New Jersey’s growing reputation for being at the forefront of autism diagnosis and treatment,” notes the New York Times. Some autism advocates have indeed been pointing to the heightened awareness about autism in New Jersey and better record-keeping as reasons for why the state has the highest prevalence rate for autism (1 in 94, according to the recently issued CDC study). Researchers in New Jersey “had a median of eight diagnostic records available to them to determine whether a child had an autistic disorder, while researchers in Maryland, for instance, had two,” the New York Times notes.

New Jersey researchers looked only at the rates in four of the state’s 21 counties. I live in New Jersey (and my husband Jim is a native; Charlie was born in St. Louis, but has lived for most of his life here) and the study touched on some familiar chords. Three of the counties are all in the northern part of the state: Essex (where I used to work); Union (where I used to live); Hudson (where I now work, in Jersey City); the fourth county, Ocean, “was chosen because parents in Brick Township had raised concerns about a high rate of autism and related disorders” (a 2000 CDC study found a prevalence rate of 4.0 per 1,000 children or 1 in 250 for autistic disorder, and a prevalence rate of 6.7 per 1,000 children or 1 in 149 for autism spectrum disorder). (Charlie’s beloved Jersey shore is in Ocean County.)

Charlie will grow up into his adulthood here and I am heartened by New Jersey’s taking the initiative in regard to the needs of autistic adults. Says Paul Potito, Executive Director of the New Jersey Center for Outreach and Services for the Autism Community (COSAC):

“Most of the time, energy and money is spent in early intervention and for people of school age, so adults really fall into a black hole,” he said. There is a need for high-quality behavioral and social services for adults, he said, “instead of tossing people into workshops and hoping it works.”

Nonetheless, the New York Times article particularly highlights research that seeks to find the cause of autism, namely, prenatal sonograms. Assemblyman Joseph Pennacchio (a Republican representing parts of Morris and Passaic Counties) is the sponsor for bill A-3669, which “requires DHSS [Department of Health and Senior Service] to study relationship between autism and ultrasounds and issue protocol for use of ultrasounds.” Pennachio notes research done by Philip A. DeFina, the chief scientific officer for the International Brain Research Foundation (IBRF); DeFina notes that research has been done “by researchers at Yale and in Sweden that showed disruption of fetal brain development in lab animals after ultrasounds, and a Minnesota study of autopsied brains of autistic children that found a similar pattern of abnormal nerve cell migration.”

One of the studies that DeFina is referring to was performed by Yale School of Medicine researchers and published in August of 2006. The study investigated how ultrasound affects embryonic mice development. While the researchers did find that “‘prolonged and frequent exposure to ultrasound’” did affect the brains of embryonic mice, Pasko Rakic, the senior author of the study, said that “‘I want to emphasize that our study in mice does not mean that use of ultrasound on human fetuses for appropriate diagnostic and medical purposes should be abandoned. On the contrary: ultrasound has been shown to be very beneficial in the medical context. Instead, our study warns against its non-medical use.’”

One should recall that, compared to a human fetus, a mouse fetus is a lot smaller. Further, according to the IBRF website, the Foundation has worked with only two children diagnosed with autism (and one was diagnosed at the age of six years old).

Assemblyman Pennacchio is quoted in the New York Times article as saying

“Certainly this is an epidemic; we better get to the bottom of it.”

I am glad that the Assemblyman is taking such a concern for autism. But I think another way to get to “the bottom” of what appears to be an autism “epidemic”—-of why New Jersey has the highest prevalence rate for autism in the country—is to consider the factors cited above: The heightened autism awareness and the better record-keeping; the fact that New Jersey has a number of private autism schools that parents from all around the world seek to get their children into. Rather than trying to get to some “bottom,” some specific thing that we can point to and say “this is the cause of autism,” I would suggest that numerous other force are working in concert. These forces range from “better understanding of autism and diagnosis” to the expanded definition of autism to embrace the notion of an autism spectrum. There is, I would hazard, not really a “bottom” to be found to why there is so much autism in New Jersey (and everywhere), but rather the coming together of numerous phenomena and forces:

Changes in clinical and diagnostic practices, administrative codes, and epidemiological methods can account for enormous shifts in numbers of cases diagnosed. The dramatic increases in the numbers are cause by several changes acting in concert changes enacted by a series of key players who raised the visibility of autism and made it a cause worth fighting for.

Who are these key players? They include scientists, clinicians, parent advocates, philanthropists, educators, speech therapists, psychologists, and behavioral intervention specialists, among others. Not one of these groups has the power by itself to create or declare an epidemic. But together they have that power. And these key players operate in our culture—-a culture that, for better or for worse, gives labels to people different from the norm, a culture in which new pathologies are continually discovered or invented, and in which new research hypotheses and data are diffused globally with a single keystroke, creating a force that is unstoppable. These are the conditions that led to the perfect storm of the autism epidemic. (Unstrange Minds: Remapping the World of Autism, Roy Richard Grinker, pp. 171-2)

Perhaps it is that this “perfect storm of the autism epidemic” blew in to New Jersey like a nor’easter (say the one in December 1992) and eroded the sand and left only the pilings of blocks of beach houses in its wake.

Last time we were at the shore, all those beach houses had been built back up, bigger than ever, and Charlie was burying his feet and hands in the salt water and the sand before running to jump into a wave.