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INTERVIEW: Attacking autism

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You may not instinctively group autism with cancer, AIDS, and heart disease. But people afflicted with this often-misunderstood disorder will most likely require some level of assistance throughout their lives. The time, money, and personnel required to provide a lifetime of care make autism one of the country's top public-health challenges, says Vincent Pandolfi, assistant professor in the psychology department at the Rochester Institute of Technology.

The Centers for Disease Control and Prevention reported in 2007 that the prevalence of autism had risen to one in every 150 children, and one in 94 boys. There is disagreement, however, over whether the disorder has truly become more widespread. The definition of the disorder may have become more inclusive, Pandolfi says, and there have been changes in the way the disorder is diagnosed.

The lifetime cost of care for a child with autism is estimated by the Autism Society of America to be between $3.5 million to $5 million.

Pandolfi is part of a multi-university research team that is evaluating the measures used to diagnose autism. The other team members are Caroline Magyar, associate professor of psychology at the University of Rochester School of Medicine and Dentistry, and Charles Dill, associate professor of psychology at Hofstra University.

The team is "testing the tests," so to speak. Some of the screening methods used to diagnose autism have not been vigorously evaluated for reliability and validity, Pandolfi says.

"There has been, in the psychology literature, really a call for more of this kind of research," he says.

The team is also looking at the measures used to diagnose mental-health disorders in autistic kids. Children with autism often have higher rates of mental-health problems, including anxiety and depression. But these problems tend to present in different waysthan they do in the general population.

"A child with significant anxiety and depression: that may put them at risk for not responding to the autism-specific treatment, if they can't participate as well because they're dealing with other issues," Pandolfi says.

In a recent interview, Pandolfi talked about the research his team is conducting and about autism in general. An edited version of that discussion follows.

CITY: How is autism diagnosed?

Pandolfi: It's recommended that children are evaluated by people with expertise in development disabilities. And actually, the "gold standard" evaluation has included the structured interview and also a structured observation.

They can be done by any number of professionals who are trained on the instruments. Typically, you're looking at licensed psychologists, psychiatrists, or developmental pediatricians.

What you'll find, at least across New York State, are differences by geographic location. For example: in the Rochester region, a lot of these evaluations are performed by physicians - developmental pediatricians - as well as psychologists. But downstate you might find more being done by psychologists and psychiatrists. All of the disciplines are assumed to be equally competent in being able to arrive at an accurate diagnosis.

Typically, you want multiple methods of assessment to be done. For example: parent interview, direct observation of a child, as well as other kinds of testing - which may well come from schools, like their intelligence, their behavioral functioning in the schools.

And you'd want any kind of psychiatric evaluations to screen for other mental-health problems.

How are you seeking to improve that process?

We're looking at two kinds of measures and looking to establish evidence-based assessment protocol.

One is on the autism screening measures themselves. The tools that were developed to screen for autism, if a child comes up positive on that, they score high enough, you'd refer them for a more comprehensive evaluation. We're also looking at measures that are designed to screen for other kinds of mental-health problems: anxiety, depression, and whatnot.

We're conducting reliability and validity studies on the autism screening measures that exist. Not all of them have really been vigorously evaluated.

In other words: how accurate are the test scores? And is this measure really measuring autism? Or could they really be measuring behaviors that you often see in autism, but aren't really characteristic of autism? They may be symptoms that kids with autism show, but so do kids with other types of disorders.

Are you just talking about children, or are these tools applicable to adults, too?

Most of our research right now has been on children and adolescents, but there are tools that are available for adults as well. Though because there's such a need to detect autism early, much of the work has gone into studying tools and even treatments for the youngest of kids.

But the field's recognizing now that the kids who were so intensively studied in the 70's, 80's, and into the 90's, that they're aging up. They're adults now. And we need more work on measures and also interventions for the adult population.

What ramifications does the growing prevalence - or at least the appearance of a growing prevalence of autism - have on society?

I think that public awareness - and there's been a lot of attention drawn to autism within the last several years - of the need for professionals with adequate levels of training is critical. Coming at it from a professional perspective: those who enter the field really need to be very well-trained to work with this very complex population.

And I think for those in society who don't work with individuals with autism, it would be important for them to be aware of who these people are, because many of them work pretty successfully out in the community. And the general public may be interacting with these individuals more frequently than they may realize. Or they may realize that something's a little unusual with a particular person, but may not be able to put a label to what may be happening.

I think the more awareness there is, the more support that there will naturally be for individuals on the autism spectrum. Many of them make meaningful contributions to society, just as the rest of us do.

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Laura Tubbs said on Mar. 09, 2010 at 1:12pm

This is wonderful work. My now adult child with Asperger's received extensive screening and diagnosis at age 7. I would hope this would be the norm for all children who might have a form of autism. The long term needs of these children will be huge and there are not currently enough resources for those who are young adults.

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Marilyn said on Apr. 11, 2011 at 6:27am

Thanks for an interesting article. I have a 8 yeaer old son with autism, being in RSA, we have zero support and very few experts to assist in diagnosis. More research is definitly the key to helping these unique individuals

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