Joe Mantegna rules in favor of autism funding
By John Morgan, Spotlight Health

With medical adviser Stephen A. Shoop, M.D.

Joe Mantegna's 14-year-old daughter is autistic.

On the new CBS series First Monday, veteran actor Joe Mantegna plays a Supreme Court justice whose pivotal vote is key in an evenly divided bench. But when it comes to his first daughter Mia, Mantegna needs little time to  deliberate. Mia wins on the merits.

"She's strong and beautiful and she loves doing homework," says Mantegna, who won a Tony Award for his role in Glengarry Glen Ross. "She is the additional  glue in our family. And we like to joke that she's a cat in a world of dogs." Perhaps even more so than most 14-year olds because Mia is autistic. Autism is a neurodevelopmental disorder that affects early brain development,  often causing communication difficulties and problems with social  interactions. Because the degree of these challenges varies greatly from  individual to individual, autism is defined as a spectrum disorder — a group  of disorders with similar features.

"Mia is high functioning and attends a mainstream regular classroom," says  Mantegna, 54. "That was a big decision because we had to weigh the benefits  of a regular class versus special education. It was very intuitive — it felt right so we did it."

And according to Mantegna, Mia has blossomed. "She's doing really well and I think the process of inclusion helps everyone, not just Mia."

Mantegna says he wasn't worried about kids teasing Mia. "I don't necessarily believe kids are cruel," says Mantegna, who has gone to Mia's class and given talks about autism. "I think when you talk to the kids and explain autism to them they rise to the occasion. God bless those kids who are best friends to an autistic child."

But things didn't always look so bright for Mantegna and his wife.
 

First born
Mia Mantegna was born three months premature after her umbilical cord became infected. She weighed only one pound 13 ounces at birth and spent the next three months in intensive care. Although the Mantegnas didn't know it, low birth weight can put a newborn at greater risk for autism.

"We're just lucky she's alive," says Mantegna. "Twenty years ago she wouldn't have lived. Mia has an incredible will."

The Mantegnas began to realize Mia might be autistic when they noticed her speech development was lagging behind. Parents typically discover this language delay around age two or three when most infants begin verbalizing more.

Mantegna remembers lots of tests being run to rule out other causes, including the possibility that Mia might be deaf. But Mia wasn't hearing impaired. Instead she had some of the classic symptoms of autism, including:

*   Delayed social interaction — the child fails to initiate or acknowledge interpersonal communications. Often this is as simple as not making eye contact.

*   Sensory processing abnormalities — The child has a heightened (or decreased) sensitivity involving as many as all five senses. In Mia's case, her hearing was hypersensitive, and she would react strongly to music until auditory therapy helped her adjust. "Now she loves music and has perfect pitch," adds Mantegna.

*   Repetitive routines — Rocking back and forth, hand movements or other repetitious motions.

According to the National Institute of Health (NIH), Mia is one of an estimated 400,000 people with autism. Approximately one out of every 500 people are is afflicted, making autism the third most common developmental disability.

And the disorder may be even more prevalent than previously thought. "The true number of those with autism is far higher than we thought," reports Dr. David Amaral, Research Director of the Medical Investigation of Neurodevelopmental Disorders (MIND) Institute at the University of California, Davis. "We now believe the figure may be closer to one out of every 150 people. And this increase is not simply attributable to better diagnoses — there is something out there causing this increase."  While scientists have yet to identify the causes of autism or provide a cure, substantial advances have been made in the past five years in the study of autism.

"This is really largely due to parent advocacy," says Amaral. "Cure Autism Now (CAN) has been very important in leading funding initiatives and genetic research. And the National Alliance for Autism Research (NAAR) has championed the need for postmortem research with their tissue program."

"The awareness levels are increasing," says Mantegna. "Children diagnosed today have so many resources compared to ten years ago. It is really important to do the research. Figure out what you can live with and make it work for you and your child."And more research breakthroughs are appearing on the horizon.

Moving forward
Last November CAN and NAAR teamed up with the MIND Institute to sponsor the first international meeting of autism research. "Autism is so incredibly complex that it is unlikely that one single lab will solve it," says Amaral. "It's a huge information processing problem to understand all the factors influencing autism. That's why it was so important to gather together our research community."

Over 600 scientists attended the San Diego conference and presented over 225 papers. But still Amaral laments that the scientific knowledge of autism is still meager.

"Right now we're on a huge fishing expedition looking for causes," says Amaral. "Researchers have looked at over a 100,000 brains for Alzheimer's. In autism, we've looked at between 55-60 brains. It's shocking. We need more funding. For any topic in autism, we need more research and hard data." Amaral is pleased that the NIH is joining the funding effort and "mounting a full court press" by creating centers for excellence in autism.

"We exploring some very exciting areas of research — including the effects of mercury and PCBs and autism," reports Amaral. "There are probably 5-20 genes influencing autism as well as environmental factors. We're very keen on developing a bio-marker to detect infants who may be susceptible to autism and perhaps some day prevent it from developing."

In the meantime, early diagnosis and intervention are critical. Research indicates that treating infants as young as 18 months provides the best hope. "I credit Mia and my wife  Arlene for my daughter's success because every day can be a challenge," says Mantegna. "Arlene is so involved in Mia's life. It's that incredible bond between mother and child. We're all very lucky." Mantegna is especially proud of Mia's younger sister Gina. "I can't tell you
how much I admire her," says Mantegna. " She is loving and compassionate — an old soul who embraces all. And I think a lot of that comes from her life with her sister."

"It may sound real cliché, but I do believe in a divine power and you're only given what you can handle," adds Mantegna.

And Mantegna seems to be handling his own series with great excitement. "I admit that I've always avoided series TV — partly because I enjoyed the  variety of movies and stage work and partly because of my daughter. Traveling is less enjoyable now and I want to be more involved in my daughters' lives. First Monday was the right thing at the right time. Just like the birth of my daughters."