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Autism in 2014: Progress, But No Clear Answers
By Nancy Kennedy

April is Autism Awareness Month, a perfect time for a “progress report” on autism, its treatment and ongoing research efforts to identify its’ origins. Much progress is being made in autism research and top-level researchers at many universities and healthcare institutions, including several in Pittsburgh, are involved in unraveling the mysteries of autism, which is believed to be a disorder of brain development. But, the answers to what the disorder actually is and what causes it continue to be elusive.

Last month, the Centers for Disease Control and Prevention issued new figures on the prevalence of autism. The study was carried out in 11 states and revealed that 1 in 68 children in the U.S. has some form of autism, or autism spectrum disorder (ASD). Although the figures varied by geographic region, they show that the prevalence of autism is increasing. In 2012, the national figure was 1 in 88 – thus the new figures represent a 30% increase. The rate works out to 14.7 children per 1,000 eight-year-olds, the CDC said. The data also revealed that autism spectrum disorders are nearly five times more common in boys than girls, and more common in white children than African-American or Hispanic children. The CDC report raises the “more detected” versus “more affected” argument – is autism truly increasing, or are the higher numbers indicative of better diagnostic tools?

In the Pittsburgh region, local autism expert Luciana Randall, executive director of the nonprofit Autism Connection of Pennsylvania, formerly known as ABOARD, agrees that there are no clear answers, but she believes that research is moving autism science forward significantly. “The research seems to point to a constellation of factors, primarily genetic differences and environmental toxins, and how they interact. We know that environmental toxins can damage genes. We know that autism is a disorder of the brain, and is not a mental illness or intellectual condition. In autism, the brain is over wired with nerves, creating a traffic jam of signals. The brain has trouble sorting it all out. Persons with autism take in a lot of information and process it differently; they can feel bombarded and overwhelmed by stimuli.”

Randall’s organization is focused on providing supportive services to children and adults with autism, and to their families, to help them overcome the challenges of autism and fulfill their individual potential. The Autism Connection serves over 10,000 people, offering support groups, conferences, a lending library, and information and resources on everything relevant to autism, from getting a diagnosis, learning about research studies, dealing with insurance issues and finding the best treatment and education for your child.

The Autism Connection of PA is also is known for innovative, creative approaches to providing support. One is what Randall calls “reverse inclusion” – meaning that the organization brings people into the autism world, letting them experience things from the viewpoint of a person with ASD. “Usually, we expect persons with autism to try to adapt to our world and our culture. Reverse inclusion is the opposite – it’s about experiencing the autism culture and trying to fit into it.”

The best recent example of this came in the form of a special performance of Disney’s “The Lion King,” performed in September at the Benedum Theatre for an audience of persons with ASD and their families. The performers, for a change, had to adapt to the audience. Special accommodations, such as leaving the house lights up, eliminating strobes and reducing loud noises, made the performance a softer one, comfortable for those in attendance who might otherwise find such a show overwhelming. ABOARD staff prepared the performers, crew, ushers and even ticket takers by teaching them about autism, and 100 volunteers came along to help out. Since then, many newly-trained volunteers who had never had a reason to learn about autism before, have requested to be involved in all Autism Connection of PA’s arts events.

To learn more about the Autism Connection of Pennsylvania, visit www.autismofpa.org.

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