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1 out of every 101 New Jersey children have some form of autism according to the figures released today by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control and Prevention.
U.S. Rep.Chris Smith (R-NJ), co-chairman of the Congressional Coalition on Autism Research and Education (C.A.R.E.), has declared that there is an epidemic of autism in the state (which is the state I live in). Rep. Smith was quoted in a press release today:
“More and more children are being silenced by autism. The fact that 1 in every 101 children in New Jersey alone have a form of autism is alarming data of epidemic proportions….”
“CDC’s latest prevalence figures for autism represent the most comprehensive effort to obtain accurate prevalence figures for autism spectrum disorders to date. This data must be used as a roadmap to further advance research, treatment and education programs to help us deal with this epidemic…”
COSAC (The New Jersey Center for Outreach and Services for the Autism Community), New Jersey’s largest autism organization, provides some thoughtful commentary on the numbers from the New Jersey Autism Study. COSAC notes that prevalence rates for autism in the surveillance area in New Jersey were 9.9 per 1,000 and 10.6 per 1,000 in 2000 and 2002, respectively. While noting that diagnoses of autism have increased among children in New Jersey as well as in other states, COSAC also comments that
The true prevalence of autism in New Jersey is unknown and it is unclear whether the apparent increase in autism rates is due to better recognition of the disorder or to actual increase in prevalence.
Just because New Jersey has such a high prevalence rate for autism in children—-the highest in the country—does not mean that there is an actual epidemic of autism here. COSAC further states:
While we cannot say for certain why autism rates are higher in New Jersey, it is likely that superior case information contained in the source records enhanced our ability to determine cases of autism.
A 1% prevalence rate confirms that autism is one of the most common severe developmental disabilities, occurring as frequently as mental retardation.
When my son Charlie and I go on our afternoon walks to the train (a 10-minute walk at most), we pass the houses of four other autistic children, all around Charlie’s age—-but does that mean that there is such an epidemic of autism in my town, that you can find an autistic child on every block?
Or is it that this town has the kind of school program for autistic children that many parents seek? And is that, due to “superior case information” and, indeed, to a much better understanding and awareness of autism (so much better that we are not even aware of how our own thinking has changed), we are now so much more able to see all the autistic persons around us, persons who have always been there, been here?
I actually think that there is a fifth autistic person whose house Charlie and I pass on our walks. But she is not a child; she is nearing middle age and has lived with her 80-plus year old mother for all of her life.
And she lives across the street from us.
i have an autistic child. i live in hudson county. have we broke down the autism ratio further, by say county or town even?
1914 days ago
[...] As the parent of an autistic 9 1/2 year old, Charlie, and a resident of New Jersey (married to a native Jerseyan), I am more than pleased to see New Jersey step up to do what is needed—-and what is right—for children and adults with autism. I agree with the Bergen Record that it is “bracing” that “New Jersey was recently found to have the highest rate of autism in the nation.” But the higher prevalence rates for autism noted in the study released on February 8th by the CDC need not only be understood as “frightening.” That 1 in 94 children in New Jersey have autism shows that, after so many years of mis- and under-counting autism cases, we now have a better understanding of what autism is and can better diagnose it. [...]
1915 days ago
[...] In the wake of the CDC’s announcement last Thursday that the prevalence rate for autism in children in New Jersey is 1 in 194, six measures that “would propel New Jersey to the forefront of the autism crisis by adding millions of dollars for research and a slew of services lasting a lifetime ” are to be introduced in New Jersey’s State Assembly as early as next week. As reported in today’s Bergen Record, Assembly Speaker Joseph J. Roberts, D-Camden, “spearheaded” work on the bills back in the early fall of 2006. The legislation includes: [...]
My father-in-law grew up in New Jersey, and I visited the house there 2 or 3 times. It’s lovely. :)
I’ve been noticing more about specific children who are autistic because their mothers know I have an autistic child and we end up talking about that. (I’ve had a number of conversations with a certain writer on the topic of autist children. She lives at the other end of the county from me, basically.) I also end up gravitating more towards other folks on the spectrum, probably because I’m more likely to seek venues attractive to such people (SF cons, anyone?) and more likely to have positive interactions with them. (“More likely” is not the same as “certain”, of course!)
(BTW, just stumbled across this and while I’ve only read the first 2 paragraphs, they’re useful. So you might give that a read. I need to go though her site and pull up ALL the links my friends on LJ might find useful, and include them in a linky-goodness post.)
Hi Jez—-
My husband grew up in Bergen county (and will appreciate your noting that, despite misperceptions to the contrary, this state is not a toxic, or an asphalt, wasteland, and unbelievably expensive) Charlie was born in St. Louis, Missouri, as that’s where Jim was teaching (Saint Louis University). We specifically came back for the autism schools—for the admittedly vague sense that having the likes of Alpine and PCDI in the same state would bode well for the public schools. I do think it has—-there is nothing like the program Charlie is in where we were before.
I know what you mean about autism seeming “commonplace”—I guess it is the downside of so much awareness. Nonetheless, it does seem to me that a lot of the general public’s understanding about autism is less than accurate, so, on the other hand, there is plenty more awareness work to be done.
1919 days ago
[...] What is “frightening,” indeed, about the CDC’s new study is that it has taken as long as it has for us to count cases correctly—-”New Jersey is Autismland” because of all the specialists, services, the unstinting advocacy of organizations here and especially of COSAC, and—perhaps most of all—the number and variety of schools and school placements and programs for autistic children in this state. It seems to me that the number of toddlers in Early Intervention programs in New Jersey has been rising (as State Health Commissioner Fred M. Jacobs notes in the Star-Ledger) because parents are on the lookout for any signs of developmental delay in their toddlers. I have spent the semester talking on and off to a father whose son has been in Early Intervention and who is thought to have autism, though he has yet to receive a formal diagnosis: This child just turned two years old. [...]
In response to the last paragraph: Yes, you don’t see thousands of adults with autism in state institutions, because there are so many adults with autism living side by side with us in our communities.
Here’s another interesting quote:
Zahorodny, an assistant professor of pediatrics at UMDNJ-New Jersey Medical School in Newark, said researchers ruled out the possibility
they were overly zealous in identifying autistic children.
“These children consistently showed problems before age 3 in social skills, communication and language,” he said. He also dismissed anecdotal evidence that large numbers of families with autistic children were moving to New Jersey to take advantage of the state’s programs, since 84 percent of the kids diagnosed were born here.
However, he added, “Our study can’t rule out something specific to New Jersey. You don’t see thousands of adults with autism in state
institutions.”
A friend (and autism mother) made that exact same point to Jim, my husband yesterday; he and I both think that better understanding, improved detections methods, the evolution and refining of the DSM, the changing place of psychoanalysis in American society, and other variables have all contributed to greater consciousness about autism and what it is — this being the argument from Roy Richard Grinker’s Unstrange Minds.
New Jersey is Autismland.
quote from NJ Health Commissioner Fred Jacobs:
“Roughly 84 percent of children receiving early intervention services are born in New Jersey, Jacobs said.”
The number of people moving to NJ for services doesn’t explain the numbers.
Hi Kristina,
I saw the news tonight ABC and while I wasn’t surprised I do think it’s a good thing that these stats come from the CDC who haven’t been exactly forthcoming with services etc. So hopefully the realities of how many kids, families are affected by autism will increase funding for education which is where we need the money.
If I’m not mistaken, you live in Bergen County as well and clearly know a lot of autistic kids as I do as well. What always strikes me is that when I go to the A&P in Saddle Brook, it could the middle of the afternoon or 1 AM there are at least 6 cars in the parking lot with autism awareness ribbons on them. Always different cars, but always autism.
If I had to guess I would say that the higher frequency of autism in New Jersey would be skewed towards Bergen County and not because as some would like to believe, New Jersey is an environmental toxic dump. That’s not my experience of Bergen County. It’s clean, it’s nice, it’s suburban, it’s great. It’s also very affliuent. If I’m not mistaken one of the most expensive places to live in the country.
I would guess, again if I had to, that it”s got the schools, the funding, the programs and it’s probably the best place you could be if you have a child with autism. So, I think a lot of people have moved here.
I often marvel to myself that what are the odds that I would have an autistic child AND the best schools and services for autism would be right in my own backyard. The statistics are quite staggering though. What gets scary is too much focus on autism. It’s getting to a point when I tell someone my daughter is autistic I get a look like, yeah so who isn’t. Or…. people will say, oh yeah but it’s not so bad….. not like it used to be.
The statistics are definitely effecting public perception of autism I’m not sure if it makes it seem less serious of problem and more like “an everyday thing.”
Something is happening…..can’t wait to see where it takes us.
Lessening all the time—-
How many degrees of separation?
Best wishes