Telluride Inside… and Out, Denver: Awed by Autism Awareness

I sat in awe as she unraveled her love story; about a world turned upside down, a child with a mysterious developmental disorder and the woman who sought to right the world again.

“When my son, Eli, was diagnosed twenty-one years ago, one out of 2,500 children was diagnosed with autism. It was considered a rare disorder.” Betty told me as Eli worked silently through his Word Search. “He screamed, literally, fifteen to twenty hours a day from the time he was born until he was fifteen. The medical community had very few answers; all they could tell me was that he was probably screaming because he has autism. Oh, and he’s dying. “Dying of what? You don’t die of autism.”  Insistent for answers, she called her fifth gastroenterologist when Eli was seven years old, and begged him to talk to her. “He is screaming, he is hurting himself, help me.”  What they discovered was that Eli was born with an anatomical but non-functional pancreas which was not allowing him to digest anything but sugars. “He was wasting away inside, no wonder he was screaming. It wasn’t until Eli was fifteen that we found some answers: The decision was made to put Eli on the drug Zofran, an anti-emetic, and Levsin, which is an anti-spasmodic because I could visually see Eli’s stomach muscles undulating while he was screaming. Within three days, the screaming was drastically reduced and he was no longer tearing his hair out.” The fight had just begun.

Once Eli was out of pain and a sense of relative calm was established, Betty Lehman turned her sights on helping others affected by Autism Spectrum Disorders, becoming Executive Director of The Autism Society of Colorado. The mission of the ASC is to make certain that the people, families and caregivers of those with autism have ready access to the services and supports they need to be safe, educated, healthy, and able to pursue happy, productive, and fulfilling lives, and Betty is all over that. Taking on the insurance companies and the Colorado State Legislature, she has worked rigorously for the passage of more than fifteen bills related to autism, quality of life and insurance coverage for the disorder.

As Eli ate his French fries and whizzed through word search and Sudoku, Betty told me more about The Autism Society, the 150 calls for help a month and the services they provide. Stories of intellectually gifted adolescents whose inability to read social cues or understand humor or sarcasm exposed them to terrible bullying; individuals across the lifespan needing 24/7 supervision in order to be safe; individuals without functional language who had undiagnosed conditions that they could not describe, and who engaged in physical self-abuse or lashed out physically at those closest to them; children who were unable to speak. The stories are not as provocative as the wealthy actress/mother on Larry King whose 4 year-old with autism yells profanities at doctors. They are more authentic, they are heartbreaking and they are in our own backyard.

Today it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. Some say this estimate is conservative and may actually be as high as one in 42. Approximately 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism, with government statistics suggesting the rate of autism is increasing by 10-17 percent annually. The average age of diagnosis is five years, yet many parents have general developmental concerns about their children much earlier: language, social skills and imaginative play, abnormalities in eating, drinking, sleeping, and mood, aggression, tantrums, odd response to stimuli, abnormal cognition, self-injurious behavior and on and on. Often years of these behaviors pass before a parent has the courage to call for help, yet early intervention is known to be key.

Beginning my journey into autism awareness, I expected statistics and to learn something more than my comfort zone normally permits; in the end I was left in a state of awe.  I was not moved from my couch by information explaining the inexplicable or the TV characters conspicuously planted front and center in their watered-down-but-good-for-ratings kind of way.  I was affected by the champions; advocates of those members of our human family who share our world but experience it so differently.  With Autism Spectrum Disorder we do not know the cause and we don’t have a cure; thank god we have Betty Lehman.