Prevalence

News Anchor1:
We are going to start tonight with some surprising numbers about just how widespread autism really is.
There is a new study out today that shows one in every one hundred fifty kids has autism.

News Anchor2:
There are updated government estimates out on the impact of autism in the United States

News Anchor3:
One in every one hundred ten children have some form of autism.

News Anchor4:
That number has jumped to one in ninety-one.

News Anchor5:
According to the CDC one in eighty eight children are now coping with autism and related...

Geri Dawson:
Over the last several decades there’s been a 600 percent increase in the prevalence of autism which is really alarming for many people. And we don’t yet know exactly what accounts for this increase.

Richard Grienker:
I'm very suspicious, very doubtful that any study can tell us whether we have a rise in incidence in autism or not. It's first of all important to understand the difference between the words prevalence and incidence. Prevalence is the rate of a disorder and the distribution of that disorder in a population at a single point in time. Incidence is the rate of new cases over time. There are a lot of reasons why we don't know the rate of new cases over time. Part of that has to do with the fact that kids get diagnosed at all different ages and they move into diagnosis, they come out of diagnosis. All you can say is that we know the prevalence at a particular point in time

Geri Dawson:
Recently there have been studies that have been conducted by epidemiologist that have been looking at how factors such as the broadening of the diagnosis, the access to services, changing in the way that people make a diagnosis. How are they influencing this prevalence and this increase in prevalence?

Richard Grienker:
The more we see something the more we think that it's new. And we are primed to see autism now. So We have constructed this category of autism, we've constructed the services, we've built them. We've trained the experts who are looking for autism. We've developed the school services that then keep those records. And Lord and behold we have lot of autism that's not a surprise.

Ricki Robinson:
We have widened the definition. The difference is that we are beginning to identify those who in the past would not be identified at the high end.

Temple Grandin:
In fact there used to be big huge piles. Increases of autism, you know, around the tech centers, you know, in the Silicon Valley type places. Because you’re kind of concentrating the genetics. See the thing is it's a continuous trait. You take a little bit of the trait you get a brilliant computer genius. You got too much of the trait you’re going to have someone who is nonverbal with a lot of sensory problems

Clara Lajonchere:
Some folks have asked the question:
Is autism more prevalent in particular ethnic groups? And the answer is no. Autism exists in the African American community, it exists in the Asian community.  African Americans and Hispanics tend to get diagnosed much later than their white counter parts. So how much does this have to do with advocacy? How much of this is a product of socio economic status? But autism does not discriminate. It affects everybody regardless of age, regardless of sex regardless of race.

Richard Grienker:
We don't have a good handle of difference and disparity in the United States, but we know that urban children in the United States are diagnosed and provided services much earlier than rural children. We know that African American and Hispanic children receive fewer services than their white counter parts

Sally Ozonoff:
There was an interesting study that came out in 2011 by a group in the United Kingdom. And they were asking a question:
If there isn't an epidemic of autism now if it's just that we were missing them all along, you know, where are all the autistic 40 year olds or fifty year olds? And it turned out in that study that the rate was just under one percent. They found a lot of undiagnosed adults in a community. You know, how many individuals are there out there who aren't diagnosed

Richard Grienker:
If you have a disorder that's one percent in order to find say 100 people with that you’ve got to look at 10,000 people. So we’re talking about having to look at large groups of people in order to identify certain statistically significant number of subjects. Autism is not a very easy thing to study. Now schizophrenia is about one percent too. Mental retardation or intellectual disabilities is about 3 percent. 10 percent of Americans take antidepressants the rate of attention deficit disorder is probably 6-8 percent. Now you start adding all these things up and you go "oh my God, we all have psychiatric disorders”. Yeah actually we do. The lifetime prevalence of psychiatric disorders in any population is over 50 percent, so I don’t get scared about this one percent because I am looking at it in a larger context.

Clara Lajonchere:
Autism speaks has a very large international presence and we’ve funded research internationally one such study that we just funded was in South Korea and the prevalence rates that came out of that study were one in thirty-eight. The rates were astronomically high.

Richard Grienker:
We had a team that was led by myself and Young-Shin Kim, at Yale University. We looked at elementary schools in a town called Ilsan, which is just outside Seoul, and we looked at over thirty eight thousand kids and we found a prevalence of 2.64 percent of the autism spectrum, which is not only higher than anybody would ever expect from Korea, but it was more than double:
Two and a half the rate than the center of disease control had found in the United States. They have the same definition of autism, but they’re only using records, they don’t actually look at actual human beings. The centers for disease control has launched a consorted effort to try to get a similar study done in the United States
They want to see if they get different prevalence figures by doing the kind of study that we did in South Korea as opposed to theirs. Which is to say looking at an entire population, looking at every child in that population - it might be a city or a county, versus simply looking at records

Geri Dawson:
And I think that the scariest part of all this is that it feels like we’re in this tsunami that is going to be happening and that if the rate of finding individuals with autism continues at the same rate it has over the past 20 years, projections now are that we’re going to go from a million living with autism in the united states in 2010 to as many as 6 million living with autism in 2050.