Autism Prevalence – Examining the Myths and Truths – Video Transcript

Transcript of Video

Heidi Roger: Hi. I’m Heidi Roger. I am a board of director for SafeMinds, and I am the mom of a 23-year-old man with autism. Today, we’re speaking with Dr. Walter Zahorodny, the associate professor of pediatrics at the New Jersey Medical School at Rutgers University, and director of the New Jersey Autism Study. Hi.

Dr. Walter Z.: Good afternoon.

Heidi Roger: Thank you for joining us.

Dr. Walter Z.: It’s a pleasure to speak with you.

Heidi Roger: Great. We’re here because the CDC released the new autism prevalence rate of one in 59 American children. That’s up from one in 68 American children reported only two years ago. You’re the principal investigator for New Jersey on this study. Can you give us a little background on this study and your role in this study?

Dr. Walter Z.: Yeah, sure. The studies conducted by the 11 site Autism and Developmental Disabilities Monitoring that work, which is the only comprehensive autism spectrum disorder surveillance system in the United States, and in this report, we’re reporting an autism prevalence among children born in 2006 and the surveillance network consists of 11 states with, together, a population of approximately 350,000 children under investigation. 350,000 children is approximately 8% of all U.S. children being investigated. In this study, in this report, the network is reporting that autism prevalence affects one in 59 children across the United States. This is one of a series of reports because the network has been conducting surveillance since 2000. I’ve been involved with the surveillance system in New Jersey since the beginning, since its inception in 2000.

Heidi Roger: Okay. The release of this study was met with conflicting interpretations. Can you give us your interpretation of the study dispelling any myths and revealing the truth?

Dr. Walter Z.: Well, I’ll give it a try. I can point to five things, which were most important to me from this report. One, that across the network and in New Jersey, autism prevalence increased 20% between 2012 and 2014. Two, that this increase is part of a larger trend that being since 2000, autism prevalence by this network has increased 150%, so this is a very significant change with a relatively small period of time. Three, New Jersey, which is the state with the most comprehensive effort in surveillance is showing autism at 3%. Three percent is among the highest autism prevalence estimates by a population based study.

Dr. Walter Z.: Four, even though many people speak about better awareness of autism, when we looked at, that is when we, ADDM network, looked at the age of autism diagnosis, we saw that it didn’t change in the last 14 years. It’s been approximately 53 months throughout this period. If autism prevalence was affected by greater awareness, you would expect the age of first diagnosis or earliest autism diagnosis to decrease, which it hasn’t.

Dr. Walter Z.: Finally, even though autism prevalence is equally distributed among black, white, and Hispanic children, minority children with autism are still significantly under-estimated in most of the ADDM network states. New Jersey was the first state to show that black, white and Hispanic children were equal to have autism, equal in their likelihood of having autism, while other states still show this to be a lagging phenomenon. Those were the high point from my perspective of this recent study.

Heidi Roger: Thank you. That’s a lot of very important information. The 3% rate in New Jersey is approximately one in 34 children and if we take that into just how many boys, isn’t it approximately one in 22 boys?

Dr. Walter Z.: Yeah, that’s right. One in 22 boys or 4 ½% of all eight-year-old boys are on the autism spectrum according to our New Jersey finding, and girls with autism have surpassed 1%.

Heidi Roger: Wow. Wow, this all sounds very alarming to me.

Dr. Walter Z.: It’s very concerning, very alarming, very disappointing, very important to take into account and to acknowledge. Once you begin to acknowledge the scope of this problem or this public health issue, only then hopefully you might start wanting to take steps toward reversing or addressing better the issues at hand.

Heidi Roger: I agree. You said that you do not suspect that the increase is due to any of the changes in the diagnostic criteria or just any better awareness, better diagnosis.

Dr. Walter Z.: Yeah. The simplest thing to conclude, the most obvious thing to conclude is that these estimates are not at all due to changing definition of autism. I’m still surprised how frequently the media reports that this could be due to better, wider definition of autism or changing diagnostic criteria. Throughout the 14-year period of doing autism surveillance, we’ve only used one definition of autism, and that’s the one that was provided by the DSM IV. We never changed those criteria, so zero is due to shifting autism diagnosis.

Heidi Roger: Great. That’s good to have that information. The CDC also says that we can’t make statements about trends in autism prevalence over time from the ADDM surveys because of changes to the researched methodology each time the study is done. Is there any basis to that statement?

Dr. Walter Z.: Yes and no. We haven’t changed the research methodology at all. That’s been one of our most important achievements that we’ve maintained a consistent set of operations and methods, but what has changed is the number and distribution of states has changed from the beginning. At one point, we started with six ADDM network sites. Then, we went to 16. Subsequently, we’ve come down to 11 states. In some states that have been in the network, they’ve changed the region in which they’ve conducted surveillance. The shifting regions across the network are indeed a problem with regard to reading the trends. It forces you mainly to focus on those states, which have maintained a consistent geographic region.

Heidi Roger: Many people look at the ADDM data as the best source of prevalence over time, so if autism was one in 150 12 years ago, and is one in 59 now, is that a good estimate?

Dr. Walter Z.: It’s good from the perspective of recording correctly that there’s been a significant shift upward in autism prevalence. That goes without saying, pretty much every indicator, IDEA data, data from the NHIS study, data from the ADDM network and other sources of population based information show a significant rise in autism across the United States in the last decade to 15 years. Where the findings are somewhat incorrect or important to interpret is that some states are completing their surveillance more comprehensively or more likely to find all the true cases of autism. When you mix sites where they’re not finding all the cases with those that are probably doing a very complete job of ascertainment, you’re watering down the composite or overall estimate.

Dr. Walter Z.: In my opinion, autism really is in U.S. metropolitan regions likely to be in the 3% range or higher. We find that in New Jersey. In New Jersey, I’m even inclined to say that even at 3%, we may be under-estimating autism prevalence. It’s not really that autism varies probably so dramatically across the United States as some sites are not as capable in finding all the true individuals with autism.

Dr. Walter Z.: I’d say we’re getting better at identifying and diagnosing children who are less severely affected, but we are also seeing that the increase in autism prevalence is pushed quite significantly by children with significant levels of impairment and with co-occurring cognitive impairments, so it’s not just slightly affected children that are making the estimates percolate upward. Autism is increasing across the board and across all subtypes, I’d say.

Dr. Walter Z.: When we started doing surveillance, we looked at how long it took to get from first attention, the first visit with a professional to maybe identify a problem, when you first got to a neurologist or developmental pediatrician in comparison to age of diagnosis. It used to take about a year between the time you would bring your child for the first professional appointment to the time when he or she got an autism diagnosis. Now, in 2014, it was about seven months. Greater familiarity with autism, probably because more and more kids are coming with autism, gets the doctors to cut to the diagnostic inclusion a little bit faster.

Dr. Walter Z.: I have no doubt that autism prevalence at 3% is a very important public health concern, an urgent public health concern. I’m very disappointed that some of the leading media in the United States didn’t report our finding. It’s hard to justify or explain. If I were to try to explain it, I would say that with regard to the media, over 14 years, it seems like they’ve been one story or two stories. Autism is higher than anyone ever expected, and it looks like autism prevalence is increasing.

Dr. Walter Z.: If you hear those stories over and over every two years, which is what happened with our bi-annual reporting, maybe there’s a kind of media habituation that that’s the story or non-story. If you said also along the way that people don’t understand why the increase is occurring, you’re at a point in which you can report very little. With regard to the CDC, I think in addition to having a responsibility to provide accurate prevalence estimates in describing the expression of autism, they must feel some strong concern that these high rates of autism would provoke public disease or I don’t know what-

Heidi Roger: A panic?

Dr. Walter Z.: Panic or some anxiety. I’m not a public health authority. No one is looking to me for public health data or information, but I think it is important to acknowledge what’s true. We do have a true rate of autism at 3%, and we have seen a true increase of approximately 150 to 200% in the period since 2000. These are important facts. Unfortunately, we can’t provide an explanation. If the CDC had an explanation, I think they would be more forthcoming in declaring the new findings in the way they might. If we can acknowledge the true prevalence or the scope of the problem, how could we help to make progress in providing the services or promoting the right research that might lead to answers about why this is occurring?

Dr. Walter Z.: Definitely, in terms of planning for the future, every eight-year-old with autism will become and adolescent and subsequently, an adult with autism, and it makes a lot of sense to be ready for that. In my opinion, the school systems are very frank and clear about the surge of autism. They’ve had to deal with it firsthand, and the practicing clinicians are also not confused about whether there’s a true increase. Let’s hope that everyone gets the message however.

Heidi Roger: In your mind, what do you think needs to be done next?

Dr. Walter Z.: In my opinion, there are a couple of important actions to take with autism so high. One, I would recommend that we do everything possible to have universal autism screening for children at 18, 24, and 30 months. I would also proposed increased research into environmental risk factors and triggers for autism, and I would make it easier for public health authorities to track autism prevalence by allowing an exclusion in the federal education laws to permit surveillance like we’re doing for autism.

Dr. Walter Z.: In the ADDM network, a number of states have never been permitted to look at information in education records. That’s because some states choose to interpret FERPA in a restrictive manner. If we’re to know autism prevalence according to this type of methodology, there has to be a public health exclusion that allows researchers to look at education records just as there’s an exclusion for public health surveillance in the health HIPAA information domain. Those three things are important public health steps that I would urge right now.

Heidi Roger: We’ve established that the prevalence rate for autism, at least in the eight-year-old population is approximately 3%. How does that compare to some other childhood illnesses, pediatric cancer? What is the comparison in terms of the prevalence?

Dr. Walter Z.: Autism prevalence is far beyond that what you would find for all forms of pediatric cancer, all forms of cerebral palsy, pediatric seizure disorder. All forms of cognitive impairment don’t amount to more than 2%, so indeed, 3% is a gigantic toll on our young people on our future, I’d say.

Heidi Roger: Again, very alarming and no response from major media, no response from the CDC.

Dr. Walter Z.: Right. Autism is a severe disorder, and it affects most individuals for a lifetime. What if a number of blind individuals or visually handicapped, hearing handicapped went from .002 to one or two or 3%? We’d be very concerned.

Heidi Roger: Everyone seems to be well aware that there’s a very large opioid crisis in the United States, and a lot of attention is being focused on that as it should be. It’s an issue that we need to be sympathetic about and help the people that are suffering from it, but the incidence prevalence rate is only less than 1%. Now, we’re talking about autism being at a level of 3%, and we’re not getting any media attention, the CDC isn’t commenting. Can you give us an idea of what needs to be done to change this?

Dr. Walter Z.: Yeah. Autism is a true public health crisis. Autism prevalence is a urgent public health concern, and while awareness is important, we’ve had now a decade of great efforts to awareness. Now, we have to take actions. Public health actions are necessary to try to understand the factors that are leading to this unprecedented rise in autism and to offer the right services to this generation and to those who’ve been affected by autism in the past.

Heidi Roger: Thank you.

Dr. Walter Z.: Thank you.

Heidi Roger: Well, thank you, Dr. Zahorodny. Appreciate your time today, and we thank you for all the valuable information and your recommendations. Do you have anything that you would like to say in close?

Dr. Walter Z.: I think the moment for action is now. At 3%, that’s a trigger for the kind of concern that this crisis deserves. I wish we had acted at 2%, but 3% is better than no action.

Heidi Roger: Great. Thank you.

Dr. Walter Z.: You’re welcome. Anything that could advance the timely detection of autism, in particular, universal autism screening is to be highly recommended.

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