Part 2: A SafeMinds Special Report “I don’t see how we can overlook 5-10% of boys with autism.”

May 10, 2021

Interview with Toms River’s Autism Report Co-Author Walter M. Zahorodny 

SafeMinds had the pleasure of conversing with Walter M. Zahorodny, Ph.D.,  co-author of the new report: Higher Than Expected ASD Prevalence in Toms River, New Jersey in 2016. He is an Associate Professor of Pediatrics at Rutgers New Jersey Medical School. Dr. Zahorodny is also the Principal Investigator of the New Jersey Autism Developmental Disabilities Monitoring (ADDM) Network. The ADDM Network is a group of programs funded by the CDC to estimate the number of children with autism spectrum disorder (ASD) living in different areas of the United States. These ADDM estimates are released every two years. Dr. Zahorodny was gracious enough to answer several of our questions about his newest research. The following is a transcript of our discussion. 

SafeMinds: Was the information presented in Higher Than Expected ASD Prevalence in Toms River, New Jersey in 2016 part of a bigger report?

Walter Zahorodny: The information provided on our poster (abstract) was presented at the current INSAR meeting. This year, the meeting is virtual.  The poster is derived from a broader report on ASD prevalence in NJ (ASD prevalence at the county and town/school district levels), under review by Autism Research.  

SafeMinds: Did you anticipate such a high rate of autism in Toms River?

Walter Zahorodny: The autism rate in Toms River is much higher than expected.  It is not the highest rate in our region, however.  We presented information from Toms River because it is the largest suburban school district in our region, therefore, provides more reliable data than smaller districts.  

As interesting as the Toms River rate is, we show an exponential increase in prevalence, since 2010, from approximately 27 per 1,000 (nearly 3%) to 73 per 1,000…..(7%), using the same autism definition and active case finding strategy.

SafeMinds: Do you feel that the autism rate in Toms River is an anomaly?

Walter Zahorodny: I believe the prevalence of ASD in Toms River is a function of high levels of access to developmental (clinical) specialists in the region (Children’s Specialized Hospital has a center in Toms River) and a school district that is well-staffed and familiar with ASD.  If the high rate of ASD was limited to Toms River or a specific section of Toms River, we would suspect the findings represent a “cluster,” probably reflecting some underlying ecological/environmental exposure. That’s not the case, so residents of Toms River have no reason to fear a toxin or some unknown causal agent in their town, driving autism rates. 

The new findings suggest that Toms River is a harbinger (or early indicator) of ASD prevalence.  In a way, similar to how the Brick Township investigation identified higher than expected levels of ASD (in 2001).  

SafeMinds: Do you have an ASD rate for 8-year-old boys in Toms River? If the ASD rate for both sexes is 7.4%, I would imagine that the rate for boys could be over 10%.

Walter Zahorodny: The 2016 ASD rate for 8-year-old boys in the Toms River Regional  Schools district was 12%.  

SafeMinds: Year after year, you present devastating autism rate increases to public officials and to American the public.  And yet, it seems like there is no urgency to find what is fueling the increase. Does it ever feel like your work is being ignored?

Walter Zahorodny: I feel the rise in autism prevalence has been largely ignored or denied in the United States.  The ‘official’ posture on this question has been to deflect real consideration by focusing on the possible and unsubstantiated influence of better awareness or change in ASD diagnostic definition. 

The ‘meaning’ of the New Jersey findings and of increasing autism prevalence has been minimized or denied for some time.  I know it’s not personal, but it is frustrating.  The messaging from CDC and other official sources hasn’t been particularly good, but the interpretation that higher prevalence is a matter of better awareness has taken hold, in spite of good evidence to the contrary.  

In my opinion, the alarm has been ringing for some time, but the response from CDC and others, so far, has been complacent, at best. 

SafeMinds: What more do you think public health officials can do to make a difference in these skyrocketing autism rates?

Walter Zahorodny: To make a difference and to overcome identified disparities, we should be encouraging universal ASD screening at 18, 24, 30, and 40 months.  We should especially be emphasizing early identification of autism in low socioeconomic status communities and enhancing early intervention programs and disabled preschool services participation by children, across communities. We should be increasing and improving studies to identify specific environmental risk & protective factor(s) for ASD.  We should determine whether ASD prevalence varies between urban and rural US communities and whether patterns of co-morbidity vary across groups. We should specify ASD prevalence in specific understudied groups, including: Native American, Asian and immigrant communities.  We should promote the timely development of evidence-based plans for increasing numbers of adults with ASD — individuals with complex health, employment, housing, and support needs.   

SafeMinds: Are there any other changes you would like to see implemented?

Walter Zahorodny: Yes, I feel individuals with ASD should qualify for an array of needed services, regardless of insurance status.  There also needs to be a systematic investigation of what interventions work for individuals with ASD.  There cannot be a one-size-fits-all approach to this complex question. 

SafeMinds: At which rate do you think autism will have to reach before public officials do something meaningful to stop the autism epidemic?

Walter Zahorodny: I don’t see how we can overlook 5-10% of boys with autism. What’s the tipping point for recognition that we have a significant problem?  I thought we passed that 5 to 10 years ago. In addition to understanding what is driving increases in autism, we should be studying the deleterious effects of misinformation from official and public information sources.  

Why doesn’t CDC emphasize the public health importance of ASD or promote effective early identification?  I wish I knew.  So many resources have been spent on the Know the Signs/Act Early.  But what’s been the outcome?

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