Friday, April 3, 2009

World Autism Awareness Day Challenges Patient-Centered Care

Trevor Johnson, 6-years-old

By Rick Johnson is senior online editor of HealthLeaders Media.

ASD. It stands for Autism Spectrum Disorder. And it's the "disorder" part that makes me cringe every time.

I don't like to think of my 6-year-old son as having a life-long medical disorder. He's smart, happy, silly, and very sweet. He was diagnosed with Asperger's (or high-functioning Autism) about two years ago.

Trevor has a mind for numbers and memorization that I envy. He loves science, complex machines, and Wheel of Fortune. But he struggles with routine human interactions and the rules of society that the rest of us have somehow mastered without much thought at all.

I'll never forget the day at Chuck E. Cheese's, when my then 2-year-old had a shocking tantrum because two other children were on the slide at the same time. This breaking of his carefully constructed rules was so severe that he didn't know how to cope. He stood there watching the other kids from a safe distance, covering his ears, and shrieking over and over: "Have to wait your turn! Have to wait your turn! Have to wait your turn!" Clueless and confused we tried to get him to calm down and play with other children before finally giving up and taking the pizza and cheese sticks to go.

Now my wife and I do everything we can to prepare our boy for life's seemingly simple challenges that remain at times frightening, overwhelming, or impossible to a child on the autism spectrum. It makes us manufacture contingencies for such mundane events as what to do if the school fire alarm rings or no one asks him to play at recess or the teacher accidently skips his turn or it's time for a visit to the pediatrician.

This list goes on and on, and new items that could invoke tears are added frequently. If everyday experiences are terrifying, just think of the anxiety that someone with an ASD must go through during a visit to the hospital.

Today is World Autism Awareness Day, and it reminds me that even those progressive healthcare organizations that have taken strides toward establishing a culture of patient-centered care might not have an environment that provides a quality interaction for their autistic patients.

And the number of people today with ASDs is jaw-dropping. There are up to 1.5 million Americans living with ASDs, and one in 150 children (or one in 94 boys) has an ASD, according to research by the Centers for Disease Control and Prevention.

"If you see enough patients, sooner or later you're going to see someone with autism," says Edward Carr, PhD, leading professor for the Department of Psychology at State University of New York at Stony Brook. Yesterday on the phone, I spoke with Carr, who is a featured expert for the Autism Society of America, about the common interactions people with ASDs have with the healthcare system.

People in your community might assume that care providers at the local hospital or medical group know how to interact effectively with autistic patients and their family members. In most cases, however, doctors and nurses are about as knowledgeable of ASDs as I was on that day four years ago at Chuck E. Cheese's when I was stunned and useless.

The surprising thing is the information and training that could help is available, says Carr. Researchers have made great advances at developing behavioral approaches for those with ASDs, but there just aren't enough healthcare providers trained to interact effectively with autistic patients.

In a "normal" hospital interaction, an autistic child won't likely be able to communicate effectively with the healthcare team, and the odds are pretty good that the new environment is going to increase the child's anxiety. Just imagine if an autistic boy needs to get rushed into the emergency room. Facing a new environment, surrounded by strange people, strange smells, and strange sounds. You couldn't blame him for acting out when the physician attempts to evaluate him, but too often the quick reaction is to sedate the autistic child to put the clinicians at ease, says Carr.

Just a little training in communicating effectively with ASD patients would go a long way toward giving them a real patient-centered interaction, says Carr. The good news is that the American Academy of Pediatrics has an online toolkit for clinicians: Caring for Children with Autism Spectrum Disorders. And Carr says the Autism Society of America has begun offering physicians education tracks with CME credits at its annual conference.

The long-term solution would be to make sure that every clinician has training and experience in dealing with ASD patients, says Carr. But in the short-term, let's at least acknowledge that autistic people are a part of our community, and that perhaps our healthcare system isn't a welcoming place for them just yet.


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