Paul Abend: Paying It Forward

Dr. Paul Abend, father of an autistic child, finds ways to address gaps in medical care and services to those with special needs.

Dr. Paul Abend has always believed in paying it forward.

The idea that a simple act of kindness can inspire a ripple effect of benevolent gestures greatly appeals to Abend, a father of three—ages 21, 17 and 13—the youngest diagnosed with autism at the age of 2.

"We were running around, trying to figure out where the best medical care and best therapy was," says Abend, 50, who has lived with his family in Warren for 16 years.  "My wife and I are both physicians, so you would think we have contacts, somebody we could go to.  And there was nothing."

Thus began a heartrending, yet life-affirming, journey for Abend and his wife, Lori, as they sought answers to their son's puzzling, often self-destructive behaviors.

"Not all behaviors are behaviors," he says. "There's usually an underlying medical problem."

This was the case with his son, who suffered from inflammatory bowel disease and other co-morbid medical conditions.

"Fifty percent of [children with autism] have gastrointestinal problems; and 30 percent have seizures, which is complicated even more when they have verbal apraxia (a speech disorder that makes it hard for children to properly put sounds and syllables together to form words)," Abend says.  "They become traumatized because they don't understand why they are in pain. And neither do the doctors—it becomes a very vicious cycle of frustration and stress."

Not one to rest on his laurels, even in the best of times, Abend—who specializes in physical medicine and rehabilitation—has spent the last decade addressing head on what he feels is grossly inadequate medical care and other services available to people with autism.

For six years, Abend coached a recreational sports program in Warren for children with special needs, with the goal to eventually reintegrate them back into the town recreational leagues so as to be indistinguishable from their peers.  He successfully lobbied for special after-school programs. He launched Autism Escapes, a non-profit company that arranges donated air travel on private jets for families in need of specialized medical care for their autistic children, many of whom would be overwhelmed by the sights and sounds of a commercial airline flight.

Earlier this year, Abend founded the Comprehensive Autism Medical Assessment and Treatment Center of New Jersey at 266 King George Road, an outpatient facility that offers physical, occupational and speech therapies.  It also serves as an "autism think tank," bringing together (via live video feeds on 50-inch television screens) top medical experts from many different specialities to discuss a particular patient or problem.

"We have to think outside the box. And that's what [the center] is," he says. "We're doing a whole integrated program."

And, Abend recently helped break ground on Mount Bethel Village, at 130 Mt. Bethel Road, an assisted-living residence for the adult autistic population—a project on which he spent four years raising money and testifying before various state committees.

"[My son] is my inspiration. When he cries, when he's in pain, I think 'I need to build a medical center.' Everybody jokes [at the Morris Union Jointure Commission Development Learning Center, which my son attends], 'your dad built you a medical center,'" says Abend.  "If he doesn't have a home, let's build him a home. Need high tech communication? Let's do that for him."

Abend has been honored time and again for his commitment, most recently with a lifetime achievement award from the township and as a 2011 New Jersey State Governor's Jefferson Awards recipient.

Yet, he says, "I'll tell you something, and I've said this to the governor and to officials in Washington, I've said it again and again: I would take any disorder in childhood over autism. Cancer. AIDS. Juvenile Diabetes. You know why? Because there's a beginning and an end—and there's predictability, particularly in medicines and outcomes.

"With autism, there's a beginning and there is no end," he added. "And it's unpredictable. Very unpredictable. That's what is so frustrating and stressful to all of us, as families. Everybody gets it when you say that—if you have a kid with autism, you'll see it. What works for one kid doesn't work for the next kid. Every kid is different. That's what is so crazy—and that's why I am so driven."

As a father, Abend says he has learned to appreciate the simple pleasure, if ever so fleeting, of connecting on a personal level with his youngest child.

"It's kind of like the surfer who's waiting and waiting for that one great wave: You ride it and it comes crashing down," he says.  "With autism, it's the same way. You have to find the time to bond with your kid. It could just be that you're lying next to him for a couple of minutes or you're driving in the car. You can be playing in a pool together. It's not going to be a typical day. That I can assure you—it's not a typical life."

For more information, visit www.autismthinktanknj.org, www.autismescapes.org, www.mtbethelvillage.org.

Know somebody in Warren you think Warren Patch should profile?  Contact Mary Ann McGann at tagintheback@optonline.net.

Shell May 14, 2014 at 02:05 PM
Dear Dr. Paul Abend, I just saw the video under Autism Brainstorm and you are totally amazing. I have written about much of the same kinds of things though I am not a doctor. The program you are putting together is a much needed team effort. I request that you look into my books that are written for families and see if by upraise you might pick up some other ways to make children well. For example look at the chapter on insufficient eye convergence with vision exercises that you can do from home. You are giftedhttp://www.amazon.com/Recovering-Autism-ADHD-Special-Needs/dp/0988853108/ref=sr_1_1?s=books&ie=UTF8&qid=1399821931&sr=1-1&keywords=recovering+autism+adhd+%26+special+needs


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