By Melissa Stagnaro
The inaugural World Autism Awareness Day was yesterday, April 2. The day, which was marked by autism related events & fundraisers here and around the globe, kicked off Autism Awareness Month here in the US.
How aware are YOU of this issue, which the Center for Disease Control and Prevention (CDC) considers an “urgent public health concern”?
According to figures published by the CDC in 2007, One in every 150 children in the United States is diagnosed with autism. That is more than are diagnosed with juvenile diabetes, pediatric AIDS and childhood cancer combined. The rate for boys is even higher as they are four times as likely as girls to be diagnosed with autism.
The prevalence of autism has increased exponentially over the last two decades. The number of school aged children between the ages of six and 17 classified as having an Autism Spectrum Disorder (ASD) in public special education programs increased from 22,664 in 1994 to 211,610 in 2006. As startling as these numbers are, they do not include children classified as autistic who are enrolled in private schools nor higher-functioning students who are mainstreamed in public schools.
Perhaps scarier than the sheer number of children being diagnosed is the fact that there is no known cause, no cure, no means of prevention and no single, fully-effective treatment.

What is Autism?
What most people know about autism could fit on the head of a pin. (Don’t be offended. I consider myself in this generalization.) We hear autism and think of Dustin Hoffman’s character in Rain Man. Only the most extreme case scenarios are ever depicted on TV and in film. The reality is much different.
Autism Speaks is an organization dedicated to increasing awareness of autism spectrum disorders, funding research, and advocating for the needs of individuals with autism and their families. They are a driving force behind the awareness movement and their website (www.autismspeaks.com) provides a wealth of information. They define autism as “a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges.”
Classic autism is one of a broad range of conditions referred to as Autism Spectrum Disorders (ASDs). Common characteristics include impaired social, emotional and communication skills, repetition of behaviors and trouble dealing with changes to routine. Symptoms vary from mild to severe along the spectrum.
No two cases are exactly alike and therefore no one treatment is 100 percent effective with all children with an ASD. Further complicating issues is the fact that, according to a 2003 CDC study, 62 percent of children with an ASD also suffer from at least one other disability or epilepsy.
Treatment plans need to be customized to each individual with an ASD. They often include a combination of behavioral intervention, speech therapy, occupational therapy, sensory-integration therapy and the Picture Exchange Communication System (PECS).
Parents are usually the first to notice signs of developmental problems with their children. If you have a concern, ask your pediatrician for an evaluation. Early detection leads to early intervention. And the age a child with an ASD begins treatment can have a very real affect on their future. (See LEARN THE SIGNS, ACT EARLY for more information.)
There is a lot of speculation as to what causes autism and why the number of children with autism has increased so dramatically in recent years. The reality is that no one has those answers. The National Institute of Neurological Disorders and Stroke believe “it’s likely that both genetics and environment play a role.”
Controversial theories abound, but none have been substantiated by significant scientific research. One such theory is the link between autism and vaccines. The good news is that the use of the mercury-based preservative thimerosal, which sparked the controversy, was discontinued in childhood vaccines in 2001. However, it is still used in some seasonal flu shots. And it was never officially recalled in 2001, so there is a possibility that children still received the vaccine after that date.
Several studies, both federally & privately funded, are currently underway to answer the questions of causation. One of these is the Study for Early Education Development (SEED) being conducted by the CDC. This five year, multi-state study is focused on identifying factors which put children at risk of ASDs and other developmental disorders.
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My interest in autism did not derive from a desire to pick a timely topic for my first column, but from a more personal experience. As I was preparing for my recent move from Colorado, I reconnected with a college friend who is passionate about the subject. And thus began my education.
Kristen & Sean Urban have a young son, Sean Patrick, who is autistic. Kristen, who holds a Master’s Degree in Special Education, considers the exponential increase of children “on the spectrum” as an epidemic. While she admits her educational & career background gives her a unique perspective, Kristen claims it did not make her more informed.
In fact, Sean Patrick’s diagnosis in 2004 made her realize how little she had been taught on the topic. After more than a year of listening to her pediatrician tell her that Sean Patrick would grow out of what she thought was a speech problem, she insisted he be evaluated. She expected him to need speech therapy, but instead he was diagnosed with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) which is an ASD.
Sean Patrick is now in kindergarten. While he is in a special education class, he is mainstreamed for certain subjects every day. Thanks to early intervention & therapy, he is cognitively on par with others at his grade level. He remains in the special education class because he does learn differently and can get a little overwhelmed in mainstream situations. “He still needs a smaller class size and a teacher who in understanding to his sensory and behavioral concerns,” says Kristen. But she & her husband are optimistic that Sean Patrick’s mainstream time will increase as he gets older.
Kristen has become an advocate for her son and other children with ASDs. She works with two agencies on Long Island which provide early intervention, one-on-one therapy and preschool programs to families with autistic children.
I stole the title of this article from shirts Kristen & Sean made for an autism fundraising walk last fall. Everyone on Sean Patrick’s team (and believe me, there were a lot!) wore kelly green shirts that said “Autism—It’s not what you think.” According to Kristen, it has a bit of a double meaning.
“People have a lot of misconceptions about how a person with autism looks and acts. Autism isn’t what they think.” says Kristen. “And how people with autism think is very different as well. They tend to think linearly and are often very literal.”