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Intense isolation

"Intense isolation" Continued...

Issue: "Who will vote?," April 21, 2012

Exhaustion, despair, disagreements over treatment, and financial pressures-"We're a daily thread hanging on"-brought the LeDeaux family to a crisis point two years ago. Mark handled the pressure by drinking. He lost his job, and he and Lisa separated-after 22 years of marriage. During that period of separation, Mark and Marcus moved to an apartment, and Lisa lived with Marcus' older sister and brother. Mark almost gave up. Mark and Lisa considered turning Marcus over to the state of Arizona for care.

Autistic people fall on a spectrum, with Marcus toward one end and Temple Grandin, who earned a doctorate in animal sciences, at another. In between are people with varying degrees of disabilities affecting communication, the ability to develop social relationships, and behavior-and it is hard to know where any one child will fall.

One child somewhere in the middle is William Fowler. His parents knew something was wrong long before William received his official diagnosis at age 2. Melanie Fowler, a special education teacher and speech pathologist, worked with autistic children while pregnant with William. She recognized worrisome symptoms-his failure to make eye contact and hand flapping-but since the pediatrician wasn't concerned, Fowler hesitated. She worked on language skills with William at home and felt the stress and uncertainty building. Her first reaction: "What do I need to do to make this go away?" Then the realization: "It's not going to go away."

William's autism spectrum disorder (ASD) took its toll on the family. As the economy slowed in 2008, so did Seth Fowler's job selling new homes. Less income came in. After a frustrating day of work, he'd come home to find a child soiling the floor instead of his diaper, a wife who had dealt with a difficult child all day, and increasing financial demands created by the ASD.

Overwhelmed.

ASD is such an intense disorder that desperate parents are ripe for scam cures and expensive therapies, many of which are unproven. Melanie's professional background made her more able than many parents to sort through the options, but even she admitted the temptation to "sell your house to pay for therapy." With less money coming in, Seth often felt as though they were "chucking money out the window. This is hard-earned money and we are spending it on speculation."

An autism diagnosis is hard on marriage. Guilt eats at mothers, who wonder if they did something wrong during pregnancy. Day-to-day behavioral and communication problems add up. For dads especially, an ASD kills dreams of having a son who is a "chip off the old block." As Seth Fowler put it, "I couldn't relate to William at all. If I were to leave, he wouldn't miss me. You give and give and give and get nothing in response. ... It was brutal. I was angry, scared, confused."

As many as 80 percent of couples divorce, leaving many single moms alone to raise their ASD kids. Seth Fowler understands that statistic: "We were often at each other's throat ... only the grace of God kept us together." The Fowlers describe their experience in Look at My Eyes (Brown Books, 2011).

Eventually Seth found a group of male friends he could lean on. The Fowlers found people with whom they could leave William for a few hours to get a much-needed break. Over time, church members who might not be familiar with autism, and might find William's behaviors scary, were willing to learn how to care for him.

What does the future hold? William Fowler is nimble on the monkey bars and is learning to swim with his face in the water. He reads better than many children his age. He loves numbers. But his disability is apparent when his parents try to communicate with him. They often have to get on their knees and say, "Look at my eyes, William." It may take several repetitions, but when he does look up and make eye contact it is like a slow internet connection that suddenly connects.

Melanie Fowler says that William understands what they say, but he processes it differently. He can label thousands of pictures, but his outward speech is limited. He knows what he wants but he can't express it. That frustration sometimes boils over into tantrums. According to the Centers for Disease Control and Prevention, two out of five children with an ASD do not talk at all. Another quarter develop speech before the age of 2, but then lose it. Two out of five have an IQ less than 70.

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