Biotech and Pharma

Where we stand on autism

World Autism Awareness day

Ryan Flinn and Rhonda Kelley change the light on their front porch to shine blue every April.

Their 7-year-old daughter, Teagan, has autism, and blue is the color symbolizing autism awareness. Teagan was diagnosed at 18 months, and doesn't communicate verbally. She is learning to use an iPad to express her wants and needs.

"The journey from diagnosis with autism at 18 months old to this point has been quite interesting," Flinn said in an interview. "You go through this natural progression of feeling depressed at first," wondering if your child will ever go to college, or hold a job, he said. "Eventually you see the child for who they are and not the autism, so to speak."

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Autism, or Autism Spectrum Disorder, affects about 3 million Americans, and tens of millions of people around the world, according to advocacy group Autism Speaks. It's been growing in prevalence, from about one in 150 kids in the U.S. in 2000, to one in 68 kids in 2010, according to the Centers for Disease Control and Prevention. Autism affects boys four to five times as much as it affects girls, leading Autism Speaks to choose blue as its signature color.

Rhonda Kelley, with her daughter Teagan, who was diagnosed with autism at 18 months old.
Source: Rhonda Kelley

The reasons for increased prevalence aren't entirely known, though the CDC says it's not solely because of better diagnosis. Autism's causes, as well, are still not completely understood, according to Paul Wang, head of medical research for Autism Speaks.

"We're still working on that question," Wang said in an interview. Both genetic and environmental factors have been identified, he said. "We don't have an adequate explanation."

Behavioral therapy, Wang said, is the cornerstone of treatment now. Drug companies have worked in the space, primarily focusing on genetic subsets of Alzheimer's, including a condition known as Fragile X syndrome.

Two drugs have been approved for symptoms associated with autism—Johnson & Johnson's Risperdal and Otsuka's Abilify—though they don't get to the core symptoms, Wang said. They can also be associated with side effects, including weight gain.

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"Autism really is a big spectrum," Wang said. It ranges from very mild to kids who are severely affected, "who have severe sensory issues and sometimes medical issues."

There is also a growing focus among some in the community on what's known as neurodiversity, Flinn said, acceptance of neurological differences without the need to treat or cure them.

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As for Teagan, Flinn said he and his wife simply want to ensure she has tools she can use to communicate effectively.

"I don't want to change my daughter's personality," Flinn said. "She's funny. She's playful. She's almost sarcastic. I wouldn't want to do anything to change who she is, but my concern as a parent is Rhonda and I won't be around forever, and we want her to be able to live independently."

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Kelley has started a GoFundMe campaign to raise money to buy iPads in her local school district for autistic kids, and she and Flinn have donated a handful themselves.

"The reality is these are just normal people," Flinn said. "They communicate differently than we do. They express themselves differently than we do. But they still have thoughts and emotions just the same."

Teagan, he said, "is my little princess, the light of my life."