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New spike in autism numbers may reflect rise in awareness

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Emily Willingham
31 March 2014

Changing picture: The most notable change in autism prevalence is the growing number who have average or above-average intelligence.

About 1 in 68 children in the U.S. is diagnosed with autism, according to the latest data from the Centers for Disease Control and Prevention (CDC), scientists from the organization reported Thursday.

This estimate represents a 30 percent increase in prevalence from the 1 in 88 children reported in 2012 to have autism. 

The researchers evaluated school and medical records of 363,749 children who were 8 years old in 2010. The prevalence data are from 11 states but vary widely by geography, from 1 in 45 in New Jersey to 1 in 175 in Alabama. The numbers also vary based on ethnicity, sex and co-occurring conditions.

As in previous years, the gender ratio is skewed, at 4.5:1 for boys versus girls.

White children are more likely than black or Hispanic children to receive an autism diagnosis. And black children and girls are more likely to have intellectual disability along with their autism.

The most notable shift is the growing proportion of those who have average or above-average intelligence, rising from 30 percent in 2002 to nearly 50 percent in 2010.

“The picture of autism is changing,” Coleen Boyle, director of the CDC’s National Center on Birth Defects and Developmental Disabilities, said at a press conference on Thursday.

The increase in diagnosis in this subgroup is a “significant contributor to the increasing prevalence trend overall,” says Craig Newschaffer, director of the A.J. Drexel Autism Institute in Philadelphia, who was not involved in the study. Although changes in underlying risk cannot be ruled out, he says, the finding “suggests that parents, educators and clinicians are still becoming better equipped at recognizing [autism] in cognitively able children.”

Constant criteria:

The CDC began monitoring autism rates in 2000. Boyle notes that since then, the methods the CDC uses to estimate prevalence have stayed the same. “That’s been constant over time,” she says.

As in previous years, for example, the researchers relied on criteria outlined in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM).

These criteria include separate diagnoses for classic autism (called ‘autistic disorder’), Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). The latter two are typically associated with average or above-average intelligence quotients.

The latest edition of the diagnostic manual, DSM-5, which debuted last May, folds these categories into a single diagnosis of autism. Newschaffer says that even the next CDC report, which will use data from 2012, will be based on the DSM-IV. Eventually, however, the DSM-5 criteria may affect autism prevalence, possibly excluding some individuals who would be diagnosed with PDD-NOS under DSM-IV guidelines.

In the meantime, the new estimates of prevalence may signal another kind of shift. “There’s greater awareness in the community around autism, more training of clinicians, more early childhood educators — that whole effort has increased awareness,” Boyle says.

Variations in awareness may also underlie the differences in numbers from state to state. One reason for this, experts say, is the wide variability in the resources available for diagnosing and serving children in different communities.

For example, New Jersey, which has the highest reported prevalence, is known for providing extensive services for people with autism, notes Rebecca Landa, director of the Center for Autism and Related Disorders at Kennedy Krieger Institute in Baltimore, who was not involved in the study. “There’s a lot of awareness among professionals in that state,” she says.

In contrast, in largely rural states such as Alabama, “we don’t know how much the media is penetrating into small communities; we don’t know what kinds of hardships families in some of these communities are having,” she says.

What’s more, intellectual disability is more common in black and Hispanic children with autism than in white children with the disorder, suggesting that children in these groups with milder symptoms may be going undiagnosed.  

That’s a “troubling” possibility, says Newschaffer. “Children with autism and intellectual disability tend to be diagnosed at earlier ages, so this suggests that the gap in diagnosis across ethnic groups may be even wider.” 

On Thursday, the CDC also rolled out a new initiative intended to help families identify early milestones made or missed and to get early support and intervention for children showing delays.

Early identification of autism is critical, says Boyle. “The earlier a child with autism is diagnosed and connected to services, the better,” she says. “Our message to parents is, if you have a concern about how your child learns, plays, speaks, acts or moves, take action. Don’t wait.”

News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation.

Comments

Name: Autismparent
31 March 2014 - 3:26PM

Coleen Boyle, stop, just stop! the autism increase is real! Since the early 1990's autism in the US has been increasing at the rate of 25% every five years. I am tired of hearing the same line from CDC officials who keep using that "greater awareness and better diagnosing" to explain the autism increase. CDC said the same thing 10-15 years ago. Either they are in denial or in way over their heads on this or misleading the public. Many experts including Dr. Geri Dawson former Chief Science Officer at Autism Speaks and Dr. Martha Herbert an autism researcher from Harvard have come out and said the autism crisis is real. Dawson called called it "an epidemic of autism" and Herbert called the increase "a catastrophe"- I could not agree more.

The fact of the matter is people are seeing more and more of our kids in their communities and in the schools. Rseachers are coming out and saying environmental factors are involved and talk about the epigenetics of autism-

Are CDC officials oblivious to this?

In 2010, Autism Speaks said this about the autism increase":

"Based on the abovementioned research, approximately 53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%). While this research is beginning to help us understand the increase in autism prevalence, half of the increase is still unexplained and not due to better diagnosis, greater awareness, and social factors alone. Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects currently supported by Autism Speaks"

To view a graph of the autism increase, go to:

http://blog.autismspeaks.org/2010/10/22/got-questions-answers-to-your-questions-from-the-autism-speaks%E2%80%99-science-staff-2/

Name: Ken Wilson
1 April 2014 - 9:20PM

No, it's not real. It's not real at all. Changes in diagnostic criteria, more sensitive diagnostic tools, and increased clinical proficiency are leading to higher rates of diagnosis.

Two scientists do not a consensus make.

People are seeing more and more kids with autism because now they know the child is autistic and not just strange. Researchers are NOT coming out and saying environmental factors are involved. More and more research comes out every day that it is genetic.

Your limited ability to grasp the effect of increased diagnostic accuracy does not negate it.

Name: Autismparent
1 April 2014 - 10:29PM

Sorry I disagree. The increase is 100% real. I know far too many families at home and at work now with kids on the spectrum. My son's k-2 class had six kids on the spectrum. One grade school, in one town and that doesn't count the more severely affected kids who I see get off everyday greeted by their aides or kids in the Middle or High School.

Yes, researchers are talking more about environmental factors in autism. Autism is epigenetic not solely genetic- there is a big distinction. In fact there was a symposium on the epigenetics of autism held last March sponsored by US Davis and Autism Speaks. Many researchers spoke. Also, in August 2010, representatives from the US EPA, US Davis MIND Institute and NIEHS testified before a US Senate Subcommittee on Children’s Health hearing entitled, "State of Research on Potential Environmental Health Factors with Autism and Related Neurodevelopment Disorders." held Tuesday, August 3, 2010 10:00 AM EDT

Here is the podcast: http://www.epw.senate.gov/public/index.cfm?FuseAction=Hearings.Hearing&Hearing_ID=1ab3cf42-802a-23ad-4a3a-686da83bf6d0

BTW, cant you debate the issue with insulting people just because you disagree? you don't even know me.

Name: Autismparent
1 April 2014 - 10:34PM

Correction: UC Davis MIND Institute. here Is the link to the Autism Epigenetics web site with presentations given at the symposium:

"Environmental Epigenetics: New Frontiers in Autism Research"

This symposium brought together scientists from multiple disciplines to consider how environmental epigenetics may be playing a role the genesis of some forms of neurodevelopmental disability, including autism spectrum disorders. March 22-23, 2013; UC Davis MIND Institute, Sacramento, CA

http://autismepigenetics.org/

Name: Greg Boustead
1 April 2014 - 4:17PM

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Name: autismparent_and_autistic
1 April 2014 - 6:20PM

I was not diagnosed until I was 48. I have above average intelligence and I am part of the statistical increase.

It is just not as simple as saying "it's an epidemic" I was diagnosed because my son was diagnosed because of increasing awareness.

And, in passing, let me say: Autism Speaks does not speak for me or my son.

The CDC is gathering data and trying to really understand what is going on. Autism Speaks is raising money by spreading fear while doing little with that money to improve the lives of autistics, or assist our families.

Name: Autsmparent
1 April 2014 - 7:18PM

This latest CDC statisitics are based on children with autism who were born in 2002 and who were eight years old in 2010. CDC determined looking at these eight year olds that 1 in 68 of those children has autism.

Name: Amanda
1 April 2014 - 11:59PM

Of course the rise is real- and it is significant. HF autism has always been here but not the the severe regressive autism as experienced by my son and countless others. ASD is rising because of environmental factors

Name: Autism parent
2 April 2014 - 12:23AM

I agree 100% Amanda. Same thing happened with my son.

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