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Getting in Autism's Face

photoAs she pushed her shopping cart down the grocery store aisle, Theresa “TC” Smith, Ph.D., was caught off guard when her then-3-year-old son Benjamin hauled off and slugged her. Smith ignored the altercation as shoppers stared at the pair, exasperated at what they had seen.”That kid needs a lickin’,” said one disapproving stranger.

Smith pondered the comment for a moment. In agreement, she leaned in toward her son’s cheek, stuck out her tongue and licked him.

“Not everything is a crisis, and you don’t have to make the people around you happy,” says Smith, a professor of political science at Albright. That’s just one of many lessons she has learned in the 15 years since Ben was diagnosed with autism.

In a new book, 101 Tips for Parents of Children with Autism: Effective Solutions for Everyday Challenges, Smith shares many other tips and lessons learned. The easy-to-read, accessible field guide offers parents help in dealing with inappropriate behaviors such as biting, tantrums and flapping. It lists ways of identifying causes of distress for those with autism, provides suggestions for increasing family connections, and teaches how to maximize communication. And, as Smith points out, she has successfully used all of the tips over the years with Ben.

Written as a companion piece to the late clinical psychologist Arnold Miller’s book The Miller Method, Developing the Capacities of Children on the Autism Spectrum, which Smith edited, 101 Tips weaves together Miller’s work with the love and humor that Smith says she and husband Bruce Auerbach, Ph.D., have clung to through the ups and downs of raising a child with autism.

As a baby, Ben could almost sit up. He was vocalizing and rolling over from the day he was born. At 2 years old, he was developing language, he smiled all the time, and he was physically active. Ben was a happy, normal child, until one day, he wasn’t.

“Ben stopped talking altogether,” says Auerbach, also a professor of political science. “It was very sudden. It was like he was on strike, but we didn’t know at the time that he couldn’t talk.” Ben regressed physically and emotionally as well. While pediatricians told Smith and Auerbach that their son was “normal” despite his inability to communicate verbally, as parents they knew something wasn’t right.

By Ben’s third birthday, Smith and Auerbach took him to a developmental specialist, who diagnosed their son with autism. They began learning more about the spectrum disorder, its causes and characteristics, and the best types of therapy for Ben. As academics, they poured themselves into research. Auerbach explored the psychological and educational aspects while Smith dug into the medical side and how nutrition plays a role. “We attacked it like a giant research paper,” recalls Smith.

As they continued their research to find the best therapists for Ben, he bounced from school to school. “Most people think you can’t teach kids to communicate after the age of 7,” Smith says, “so they get thrown away.” From ages 7 to 8, Ben attended the Albright Early Learning Center (AELC), which housed a special education program at the time.

Michelle Hanrahan Heckman ’98, now a lifeskills and autistic support teacher for Muhlenberg Elementary Center, was one of Ben’s teachers. Working with children with autism can be challenging, Heckman says, particularly because one child can be completely different from another. “The key,” she says, “is to understand what’s meaningful to the child. That’s when you’re able to pull things out of them.”

While some children with autism don’t like to be touched or hugged, Ben was “a cuddle bug,” says Heckman fondly. “If something happened and his behavior was bad, he needed to know that you still loved him and that it was going to be okay,” she says.

Ben also taught Heckman a thing or two. “Sometimes you would look at him and think that he didn’t understand you, but then he’d show a sign and you knew that he did,” she says. “He taught me to be more patient and to see that there was more in there than one might think.”

Heckman worked with Ben privately in the home as well. “Michelle was gifted, just incredible,” says Smith, who notes in the book that parents must remember that they need respite, too. “Do everything possible to get some help,” she advises.

Luckily, they also had the Albright family to lean on. From members of the education and psychology departments to students such as Rita Foley Thorn ’00, who also provided in-home care for Ben, Smith says gratefully, “If it takes a village to raise a child, we certainly had the helping hands of many villagers.”

Just before Heckman moved to New York in 2002 to begin a master’s program at Columbia Teachers College, Smith and Auerbach discovered Miller, a clinical psychologist and executive director of the Language and Cognitive Development Center in Newton, Mass.

book cover“Dr. Arnold Miller was a wild man,” Smith says. “He was larger than life. He could be infuriating with adults, but when he worked with kids, he was totally focused on them.” He was so focused that Smith and Auerbach knew the moment they stepped into his office that he was the right therapist for their son. “When we went to see Dr. Miller, we could see on his face that the world just disappeared and all he could see was our kid,” says Smith.

For the next 10 years, Miller and his deputy director Paul Callahan, Ph.D., worked with Ben, mostly via videoconferencing from a special room added on to the family’s home in Pottstown, Pa. The room included a cathedral ceiling to accommodate the Elevated Square, one of the components of the Miller Method. Lifting a child with autism to a raised height helps the child to build body awareness so that he or she is able to better focus on a task. Any safe structure that stands about 30 inches off the ground will help to reduce distractions for the child.

Smith and Auerbach became entrenched in Miller’s work. “Arnold was really on to something,” says Smith. “His therapy involved much more natural methods. He was able not only to reach Ben, but show that severely affected kids, like our son, can be teachable, even smart.”

Since summer 2012, Ben has attended the Crotched Mountain School in Greenfield, N.H., a residential school that specializes in educational services and therapies for children and adults with autism.

Now the 18-year-old faces new challenges—”like testosterone,” Smith jokes. But on a serious note, she says proudly, “Ben is finally starting to understand that he has skills and talents.”

That progress is due in large part to Miller’s work and expertise, says Smith, who approached him in 2010 about collaborating on a book that would provide parents “prompt help for real problems.” A field manual, it incorporates Miller’s worksheets, writings, emails and personal correspondence with Smith’s light-hearted quips and stories about life as the parent of a child with autism.

“We parents are down in the dirt, wrestling with what autism has done to our children,” Smith says in the book’s prologue. There’s the time Ben ran out, completely fearless, onto a frozen pond and Smith had to crawl Army-style across the ice to fetch him. Or the time she went to use the bathroom and came back a minute later to 10 pounds of flour all over her kitchen. 101 Tips provides suggestions about and solutions to a multitude of situations just like these.”The average parenting tool is not going to work for a severely autistic kid,” says Smith, “but there really are things that work that people don’t know about.”

Unfortunately, Miller died in August 2011, shortly after the pair had collaborated on the book’s structure. But, with the blessing of the Miller family, Smith went on to finish the handbook.

In the end, she leaves parents with one last bit of advice from the good doctor: “Don’t give autism too much respect. Get in its face.”

And, she adds, “Think twice before you go to the potty.”

One Response to “Getting in Autism’s Face”

  1. Trilby Smith Idzerda says:

    I always think twice before going to the potty, especially at TC’s house, where one might be greeted by a curtain in the bowl. TC Smith is my sister. I have watched over the years as she and her husband have wrestled, Jacob-style, with autism as it landed in Ben. Parents, never lose hope and never stop trying something new.

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