According to a study released last week by the U.S. Centers for Disease Control and Prevention, autism rates have soared in recent years, with estimates revealing that about 1 in 68 children cope with the developmental disorder — a statistic that more than doubled between 2000 and 2010.
The CDC study, which drew conclusions based on 2010 data from a variety of sources, is not representative of the whole country, said Dr. Jennifer Keluskar of The Cody Center for Autism & Developmental Disabilities at Stony Brook University Hospital.
The study involved data about 8-year-olds from 11 states — not including New York — and the prevalence of the disorder varied greatly among those states, ranging from six diagnosed cases of autism per 1,000 children up to 22, according to the study. In New Jersey, the closest state to be included in the study, autism was reported in 1 in 45 children, among the lowest rates found.
“Among different communities, you can see a big difference in prevalence, so we do think the data is probably skewed in that respect,” said Dr. Keluskar. “We do think that does make a huge difference.”
Numbers released previously by the CDC, based on data collected in 2000, revealed that about 1 in 150 children had autism. Both studies, however, show that it is much more common among boys. The most recent report shows that in 2010, the disorder was found in 1 in 42 boys compared to 1 in 189 girls.
So what do all these numbers mean for kids on Long Island?
Michele Iallonardi, board member for Autism Society of America’s Nassau/Suffolk chapter, said she believes the 1 in 68 statistic sounds about right for our area.
“That may be shocking to the general public, but for those of us in the autism community, we know how common it has become,” she said, noting that the statistic is already four years old. “I think it’s accurate — or an even higher incidence than that shows. Everyone knows someone who has a child with autism.”
Ms. Iallonardi said the Autism Society of America’s local chapter serves more than 1,500 families with one or more autistic children.
Dr. Keluskar said the reasoning behind the reported spike in prevalence is unclear but said she is optimistic that it could be, in part, due to “more awareness about the disorder and a greater likelihood of detecting it.”
“I want to be optimistic and say part of it is due to the development of better tools for diagnosis,” the doctor said. “We have come up with some really great measures for assessing autism and there’s more awareness of these tools.”
Those tools include the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview–Revised, which are used to assess communication, social interaction and play in children suspected of having autism or other developmental disorders, Dr. Keluskar said.
Such tools have helped diagnose those living with mild and high-functioning forms of autism — cases she said “certainly were missed in the past.”
“For kids with at least average intelligence, they have often learned other strategies for coping with their environment — and so sometimes the symptoms can be harder to discern,” Dr. Keluskar said.
Ms. Iallonardi said autism awareness has increased “because there are more people with autism. It’s happening all over.”
“Do I think the increased rate is because of increased awareness?” she said. “No. Where are all the adults with autism? There are some adults with autism but not in the rate of our children now.”
Dr. Keluskar said researchers are still trying to discern whether environmental aspects play a role in the development of autism.
“There is a lot that we don’t know about what causes autism,” she said. “There’s definitely a genetic component. What’s unclear is what impact environment has, like the pre-natal environment, for example.”
Ms. Iallonardi said that while such a study could help researchers better understand the disorder’s prevalence, “Locally, for us, it’s sort of disappointing — it’s just more data.”
Both Ms. Iallonardi and Dr. Keluskar said much more needs to be done to better understand the disorder in order to help children and adults living with autism.
“It’s good because more people are becoming aware,” Ms. Iallonardi said. “But what we need is more support. We need more programs that cover respite and aid at our local schools. So many kids don’t have appropriate school programs. We want more help for our kids now.”
For more information about Autism Society of America’s local chapter, visit nsasa.org.