Joe Mantegna isn’t so much a movie star as a character actor. Since his debut in the 1969 Broadway production of Hair, he’s diligently perfected his craft. Over the years, he’s added writer, producer and director to his credits, along with his roles as husband to wife, Arlene, and father of grown daughters, Mia and Gia.
Mia, his oldest, is autistic, high functioning and well aware of her condition. She also has a wealth of support in her family who ensure that she’s involved in the world as much as possible. Her father’s career as an actor has played a part in her development, as well.
“It’s an in-your-face kind of stimulus. She hasn’t existed in a closed society where she’s hidden behind the curtain and it’s like, ‘We’ll deal with this privately,’” he continues. “It’s always been our intent as parents to get her out in the world, so she can learn to cope. We know there are obstacles to overcome, but at the end of the day, she’ll be better prepared to continue on in her life probably for many years, well beyond when either her mother or I will be around to help. So, it’s important that we give her all the tools and help we can now.”
Long one of the busiest actors around, with a resume that ranges from The Godfather: Part III to The Simpsons, Mantegna tries to impart the wisdom of his years to his daughters. “You can list a myriad of diseases and things that can go wrong with a human being,” he says, “but you find accommodations can be made. You have to adapt to the world as it is and find modifications whenever possible to make life a little easier.”
When he was first starting out as an actor, however, Mantegna refused to take the career path that seemed easiest.
“I didn’t have a plan B,” he says. “I knew I wanted to be an actor starting at the age of 16. It was all or nothing.”
That’s been his approach as a parent of an autistic child as well—no fallback position, full commitment. And that in part explains why he recently hosted ACT (Autism Care and Treatment) Today!’s annual Charity Golf Classic Tournament in Westlake, CA, where he helped raise funds for military children with autism.
“My feeling is, if it helps put a face on these kinds of organizations, why wouldn’t I [support it]?” Mantegna explains. “There are a lot of people less fortunate than I am. I have the means and the capability to take care of my daughter. Many people have it a lot tougher. So when I’m asked by these organizations to devote some time and energy to helping them reach some of their goals, I’m glad to do it,” he says. The military angle was a bonus for Mantegna, whose uncle served in General Patton’s 3rd Army during World War II. The actor is a staunch supporter of the U.S. Armed Forces, and co-hosts an annual Memorial Day concert with fellow actor Gary Sinise.
Autism affects the rich and the poor, the obscure and the well known, including Sylvester Stallone, Jenny McCarthy, Holly Robinson Peete, and Aidan Quinn. More children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined.
Mantegna, 65, was born in Chicago and studied acting at DePaul University. He married Arlene Vrhel in 1975. Eleven years later their daughter Mia was born after an emergency C-section performed to save the child’s life. At birth, she weighed one pound and 13 ounces, and spent her first few months in intensive care. A few years later, the Mantegnas noticed that her ability to speak was as limited as her attention span. After having her evaluated by a neurologist, they received the diagnosis.
Even though it was 22 years ago, Mantegna remembers it distinctly. “When they tell you your child has autism, it’s devastating. It feels like somebody shot a cannonball into your chest.” He remembers listening to the doctor and feeling the hopes and dreams he had for his daughter begin to be replaced by worry and concern that she’d never have a fulfilling life.
Mantegna pauses, the memory clearly visceral for him. “But, you know, you have a couple of choices during a moment like that. One choice is to surrender and whine, ‘Woe is me,’ and see the glass as half empty. Or you pull yourself together and see the glass as half full. And you ask yourself, ‘How do we try to maybe fill it up a little more?’”
For the actor, it wasn’t a difficult question to answer. He chose to stand his ground when negotiating with producers. “Okay, we’re going to Russia for three weeks? Then [my family is] all going,” he would tell a producer. “‘Really?’ the producer would ask. ‘Yeah, really. We’re all going or I’m not going. Get another actor.’” Mantegna’s resolve paid off, and his family benefited.
As a result, Mia and Gia have traveled the world, attending schools in different countries, and Mia has been exposed to a variety of therapies. As the girls got older, however, world travel got less appealing. “They didn’t want to move so much, understandably,” Mantegna recalls. “They had friends, and their social life evolved around school. I realized I had to look at what I could do to change my lifestyle. Rather than traveling the world making movies, what else could I do professionally?” Mantegna has been a regular on the TV show, Criminal Minds, for six years, which has enabled him to come home every night and lead a more balanced life.
One trait he possesses that allows him to roll with the hard knocks is his sense of gratitude. “I don’t care how successful you are, who you are, or what walk of life you come from, everyone has their own story of problems and challenges. If having a child with a disability is the worst thing that has happened to me in my life, then so be it. I’ve been lucky in many respects,” Mantegna reflects.
He is aware of the contrast between his life and some of those around him on the golf course in Westlake. “Talking about military families—they don’t have the luxury, as I do, to be with their families while they work. I played golf with these men today. One of them is in the Navy and works on a submarine. He gets on a submarine and goes away for six months on tour. He can’t take his wife and kid with him—autism or not. They don’t give you an extra bunk on the sub.”
Mantegna tends to see things that way, from a practical point of view, from an Everyman perspective, sometimes looking in, sometimes looking out. He thinks back, for instance, to when Mia was first born and he and Arlene had a sense that their life was going to change but didn’t know exactly how: “I didn’t know what it was like not to have a child with autism. It had its challenges, without question. And sure, if I could summon a genie who could grant me one wish in this life, I would say, ‘Let’s fix that! Let’s make that go away!’ But that’s not going to happen. So it’s something my whole family deals with, and we just do the best we can. A lot of people are dealing with things far worse. It’s like the old proverb: I lamented over the fact that I had one shoe until I saw a man who had no feet.
“I think in some ways you’re strengthened by these kinds of challenges in life. If you can’t totally overcome them, just make the best of the situation.”
Mia’s autism has not only strengthened her mom and dad but enabled her sister, Gia—born two and half years later—to learn empathy and compassion at an early age. Having a second child gave the Mantegnas a broader perspective on both parenting and child development. He says, “If you just have that one child”—one diagnosed with a disability—“you never will understand the normal kind of developmental stages that a child should go through to reach maturity.” With Gia, the Mantegnas were able to discover which behaviors could be attributed to autism and which were just a part of growing up. Some things were similar and some were different. “In many ways my younger daughter has to be the older sister because you have one child who develops up to a certain point, where the other child bypasses her in many areas. But Gia benefits from that in many ways.”
The pride is Mantegna’s eyes is clear as he talks about the relationship between his daughters. “At a very young age, Gia understood that her older sister was a lot different than the other kids,” he says. Gia sensed that she had to take the reins and grow up a little faster. She’s become Mia’s protector, her guardian and even her teacher.”
Mantegna has seen firsthand the difference between those who don’t have empathy for Gia and those who do. One of the latter, a teacher in Chicago, was instrumental in helping the family realize they didn’t have to always protect Mia from the rest of the world, and that she could learn with the other students and adjust to changing environments. That teacher convinced them it was all right to put Mia in a regular first-grade classroom as long as the other children, and the adults who interacted with her understood more about her condition. Not surprisingly, that teacher had a sister with autism.
“It was the first time a teacher, or any one else, said, ‘Don’t worry about it’ and included her in a regular class,” Mantegna recalls. “Up to that time, my daughter was in special education.”
The actor and his wife sat in the back of the classroom and observed as this caring instructor took Mia by the hand and led her to the front of the class. She introduced the child by saying: “Here’s Mia. She has autism. She’s going to be a little different than the rest of you. She’s going to probably talk to herself. She may just walk up to the blackboard and start drawing. She may sing. She may say strange things, but we’re all going to help her, right?” The Mantegnas became teary-eyed as they watched a room full of 6 year olds respond enthusiastically: “Yeah, OK!”
That teacher had a tremendous impact on how the family viewed their situation. They moved from necessity thinking to possibility thinking. As parents, the Mantegnas would never again buy into the idea that their daughter had to be in special education and forever live in a sheltered environment.
“When we came back to Los Angeles, that experience changed our whole outlook on how our daughter should be educated—what we should expect from the schools, what we should expect from life in general, in terms of inclusion,” Mantegna says.
Mia attended regular classes from fifth grade through high school. She also attended an 11-week socialization program at the Help Group in Los Angeles, which enabled her to speak more comfortably and confidently on the phone. The Mantegnas used the Chicago school teacher’s strategy of just letting the kids know. “Once you include the other students, they become part of the process, and they become accommodating,” the actor observes. “Passing the information to others makes all the difference.”
Today, Mia works one day a week as a bookkeeper in the family restaurant, ‘Taste of Chicago’, in Burbank, CA. She is good with numbers and adept with computers. The rest of the time, she works as a makeup artist for Inclusion Films, a production company that offers a series of practical workshops for adults with developmental disabilities, run by former special-education teacher, Joey Travolta, the brother of actor John Travolta.
When you listen to Mantegna talk about Mia, it’s obvious that she has taught him and the rest of his family how to understand and accommodate autism on an intimate, loving level. And because the family has chosen to expose her to many different social environments rather than keeping her hidden behind the curtains, maybe those of us she touches along the way will also learn how to better adapt to autism, as Mia has learned to better adapt to the world.
by John D. McMahon
Articles in the Joe Mantegna Issue; Senator Harkin — US Budget Must Reflect Our Values; Ashley Fiolek — A Concussion Tests Her Ability; Humor — All in the Family; Web Widget — Accessibility Works; Chinese Art — Raw Beauty of the Innocents; Geri’s — Survivor Guide; Golf Pro — One Arm, Limitless Possibilities; Road Trip — MS Changes a Biker’s Course; Charlie Kimball — Racing Against Diabetes; Joe Mantegna — When Life Flips the Script; Nancy Alspaugh-Jackson — Crusader For Autism; DRLC — Beware Genetic Discrimination; Betsy Valnes — Connect the Dots in Disability Circles; ABILITY’s Crossword Puzzle; CRPD — Information and Communication Technologies; Events and Conferences…