It is a shock for any parent to discover their child has a physical or mental issue that will impact their lives. Nothing can prepare a family for that moment sitting in a doctor's office, waiting for the results of a battery of test and hearing a sentence that begins with “I’m sorry…”
Fame does nothing to change that. All of the celebrity status and money in the world may make treatments easier because money is not an issue, but it still does nothing to dilute the panic, fear and grief that overwhelms you in those moments.
A number of celebrities live with autism in their lives, either as a parent, a grandparent, a sibling or as someone who lives with autism themselves.
Here are the stories of a few famous faces who have dealt with their child's autism diagnosis in different ways. Some choose advocacy, some choose charity, others choose to keep their child and the autism in their family out of the spotlight. However they deal with it, they are all the parents of children who have been diagnosed with autism, and this is what they have to say.
In 1992 Dan and Claire Marino were told that their three year-old-son Michael had autism. Still, a little-known diagnosis at the time and Dan Marino later said of autism "We didn't know what it was. We actually had to look it up in an encyclopedia." (Which for those of you under the age of 30, it’s like the internet on paper.)
The NHL star, regarded as one of the greatest quarterbacks of all time, was in the midst of his stellar career and the family had no idea what to do. "But then we took it head on and said, 'We're going to do whatever we can to help Michael to get the best help. We want to give him the best chance he can have to succeed in life,'" says the former NFL star. That's where the focus for The Dan Marino Foundation started.
Mary is the only child of Gary Cole and actress Teddi Siddall. In 1995 they took her to a doctor because they were concerned about her development. Cole said “[She] didn’t process information like you or I do, and did not pick up on social cues.”
Cole openly admits he had no idea what autism was, and had no references other than “Rain Man” but he also says awareness has blossomed in the last few years.
“It seems you can ask any friend, any relative and they’ll be able to tell you about someone they know with autism. Or direct you to a good doctor who can help.”
His advice for the parents of the newly diagnosed is “seek answers, and the earlier, the better” and that “your original agenda as a parent is set aside” as soon as the diagnosis of autism is made.
Sly and his wife Sasha had sought help when they began to notice their three-year-old son Seargeoh was having trouble communicating. They had nicknamed him their “silent genius” because although he could repeat words at an early age and write letters, he did not actually speak. After the diagnosis they jumped into high gear, trying different treatments and therapies. When Seargeoh was six, his mother told an interviewer, “He has his own room, gets up early and, like most kids, drags out all his toys. All this therapy is geared toward communication. He is integrated with other children and has been diagnosed as being a ‘high-functioning’ autistic.”
Both of Seargeoh’s parents have become fierce advocates not only for their own son but for other adults with autism, and they raise money and awareness at events across the country.
Holly said that her son being diagnosed with autism was the most devastating moment of her life. To make things worse, she did not feel supported by her nearest and dearest because both her husband and her mother resisted the diagnosis. “I was going to leave my husband and divorce my mom,” she says emphatically. “I knew we had to roll up our sleeves and not go into denial. With autism, early intervention is important. We had to get those therapies going.”
“You really find out who your friends are,” she says. “When your kid is struggling at 4, being disruptive, and he stops getting invited to parties and play dates, it hurts.”
Now a clubhouse attendant for the Dodgers organization, Robinson-Peete's son RJ is 17 and has authored a book with his mom called “Same but different. Teen life on the #autism express.”
11Robert De Niro
The fact that Robert De Niro’s 18-year-old son Elliot lives with autism was placed front and center last year when the Oscar winner withdrew “Vaxxed: From Cover-up to Catastrophe” from the prestigious Tribeca Film Festival.
The film features the disbarred doctor Andrew Wakefield who began 'the vaccines cause autism theory' while researching the effects of measles (he owned a patent on a single measles vaccine) on the gastric system.
Robert De Niro and his wife, Elliott's mother, Grace Hightower, are not ruling out the possibility that vaccines caused Elliot’s autism. “There are many people who will come out and say 'I saw my kid change overnight,'” De Niro said during a 2016 appearance on Today.
“Is that the experience you had?” asked host Willie Geist, to which De Niro replied: “My wife says that. I don’t remember. But my child is autistic. And every kid is different.”
Famous as a member of Boyz II, Men Shawn Stockman is now a record producer and founder, along with his wife Sharhonda, of Micah’s Voice, a charity devoted to helping families who are living with autism.
It was Sharhonda who first noticed the difference in one of their twin sons. Micah was the first of the two boys to walk, was the first to talk, in fact, he was the first to do everything, constantly pipping his brother Ty to the post. Then, shortly after they reached the age of one, Sharhonda saw Micah’s abilities begin to decline. As she described it “the light started fading from his eyes.”
From that point, Micah was diagnosed at the age of two, and the Stockman's started their charity “Micah’s Voice” to build a community to share information about treatments and support for autism. The charity also provides financial assistance to families who are not as financially secure as the Stockman's.
Aidan Quinn speaks openly about his belief that his daughter's autism was a result of the MMR vaccine she received at the age of fourteen months. He says “She was a normal child, way above normal, in fact. And then she received a vaccination. She got a 106-degree fever, she turned blue, and she woke up the next day a completely damaged child after that.” The official diagnosis was severe autism, and she now spends much of her time in a special needs residence.
“For me it’s extremely important to speak up, when I see someone is having a child, or have a chance to talk in the media, to tell the truth,” he says, adding: “I get nothing out of this — I get to be made fun of and castigated and called crazy, even by some of my best friends who can’t open their minds — except the fervent hope that others won’t have to live through what my family has to live through.”
Braxton's son, Diezel, is 14 years old and was diagnosed as living with autism at the age of three.
"I remember the signs: like no eye contact, very little communication, just little things and I said 'hmm.'"Braxton said. "As a parent, you always feel, was there something I could have done differently. But what I've come to understand through my friends at Autism Speaks, is there is nothing wrong with our babies, and it's nothing you've done, or you could have done differently, it's just what the situation is."
The seven time Grammy winner felt her son’s autism was a punishment for an abortion she had had many years earlier.
"In my heart, I believed I had taken a life - an action that I thought God might one day punish me for," wrote Braxton in her autobiography. “My initial rage was quickly followed by another strong emotion: guilt. I knew I'd taken a life...I believed God's payback was to give my son autism.”
Heisman Trophy winner Doug Flutie and his wife Laurie established the Doug Flutie Jr. Foundation for Autism in 2000 after their son Doug Jr., known as Dougie, was diagnosed with childhood disintegrative disorder (CDD), a very rare autism spectrum disorder. After the initial shock wore off the couple went all out to support families who did not have the financial resources for therapies and equipment.
Children with CDD develop normally for at least two years but then lose some or most language, motor, and social skills. Dougie, now 25 and 6 feet tall, is termed "low functioning" -- he learns at a very slow pace, says Flutie, but does go to school and is progressing.
Throughout the year, the foundation hosts numerous fundraisers, some of which Dougie attends. "People really connect with him," says his proud dad. "We give comfort to families, so they feel like they're not alone."
Joe Mantegna and his wife Arlene had been on the lookout for any differences in their daughter Mia might display because she was born prematurely but it was not the usual preemie eye or lung issues they saw.
The family was used to traveling together when Mantegna was filming. “We saw no reason to stop doing that. We thought if we were going to face this, let’s all face it together. Let’s do this as a family,” he said.
He tells the story of Mia’s first day at the school when the teacher walked in front of the class and said, “This is Mia. She’s going to be a little different than the rest of you kids. She might start singing to herself, she might walk up to the blackboard, she may talk to herself, she may say some inappropriate things. It doesn’t matter. She has autism. And we’re all going to help her.” It was the first time he and his wife felt hopeful for their daughter's future.
One-third of the band Crosby, Stills & Nash, Stephen Stills has used his star power and celebrity friendships to raise money for Autism Speaks. His last “Light Up The Blues” concert, which has become an annual fundraiser, featured Neil Young and was hosted by Jack Black.
Son Henry, who lives with autism, appeared in the “Light Up The Blues” film, playing the bongos
“He plays bongos with us for three-quarters of the act.” said Stills “ We had to do something to take the eyes off the gnarly, nasty old men in front.”
Talking of his sons progress, the award winning musician says, “Henry just graduated from high school and is going to film school. We beat the autism back. He graduated at grade level, thanks to my wife, Kristen.”
Henry appears in the HBO film “Autism, the Musical.”
Hilfiger and his wife, Dee are both design superstars and the parents of children with autism. Dee's son is from a previous marriage and has autism as does Hilfiger’s daughter 21-year-old Kathleen. Although the initial diagnosis was a shock, the lack of understanding, studies, and research was even more so.
“The government is not involved in it. People aren’t donating enough money. There’s not enough research,” he said. “There’s no cure. It needs help, so we’ve become involved.”
He speaks of some of the struggles his daughter has had. “She’d come and wake me up in the middle of the night and ask, ‘Am I intelligent?’ or ‘Someone in school told me I was a retard, is that true?’ It’s just heart-wrenching.”
Fortunately for Kathleen, says Hilfiger, having a stepbrother who is also on the spectrum has been wonderful because she has someone close who actually understands how it is to be her.
Famous for claiming that vaccines were responsible for her son's autism, Playboy Playmate, actress and author Jenny McCarthy has subsequently tackled her son Evan’s autism with a lens focussed on her.
Evan was diagnosed with epilepsy and had been taken to a doctor about that condition when McCarthy was told, out of the blue, he had autism: “This can’t be. He is loving and sweet and not anything like Rain Man. How can you tell after only a few minutes?” was her first reaction and she says of the rest of the visit.
“He pointed to the corner. Evan had taken those cones doctors use to look in your ears and made a perfect row. 'Does he line up toys at home instead of play with them?' 'Yes, but don’t all kids do that?' 'Nope,' he said. 'And they all don’t flap like that either. That is a stim – a self-stimulatory behavior. It’s an autistic trait.'” He also told me 30 percent of autistic kids suffer from seizures.
Seven time Emmy Award winning actor Ed Asner has both a son and a grandson on the autism spectrum. "Here, issued from my loins, it seems to be cropping up all over the place in terms of autism," said Asner, who at 87 years old retains his humor and wit.
Asner says that autism has taught him “To be more of a human being. We never fulfill our capacities in that respect… I don’t think…and it certainly has taught me and I have failed miserably at it both with my son and my grandson. I have to keep working at it and learn and practice and to do good.”
“I can only say that having a son and a grandson with autism has made me a better man. I may not look like a better man. But, I know I am a better human being because of their existence, and I hope they continue to improve me.”
Famous for his roles in The Dukes of Hazzard and Smallville, John Schneider helped found the Children's Miracle Network long before he had a son with autism. "Fortunately, Autism is not like some of the terrible diseases we are fighting to cure through the Children's Miracle Network. It's not going to kill Chasen," says Schneider, "It doesn't mean it's easy for Chasen, but he's an amazing kid, and I am so proud of him."
Schneider also said, “Autistic kids, as well as adults, are amazing people who we can learn from. I believe the best thing you can do is to help them focus on something they are truly interested in, and you will be amazed at what they can accomplish! For example, my son, Chasen, was interested in both sport and history of body building when he was eleven. He focused and was published in two separate magazines on the sport with the byline 'But what do I know...? I'm just a kid!'"
Sources: People.com, blackdoctor.org, everydayhealth.com, dailymail.co.uk, The Today Show, Brainworldmagazine.com, autismspeaks.org, tennessean.com
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