Jenny McCarthy wants the world to know how she saved her son and how you can too.
It takes Jenny McCarthy a moment to ponder the question. Did she ever think she would be a spokesperson for autism? A media blitz for her new book, Louder Than Words: A Mother’s Journey in Healing Autism, has led her here: a hotel suite at the Island Hotel in Newport Beach, just hours before she hosts Ante Up for Autism to benefit Talk About Curing Autism (TACA), her first official fundraiser since opening up about her son and their battle with autism.
She had previously written three books. Her second, Baby Laughs, was a New York Times Best Seller. McCarthy was never a stranger to the limelight. She has been well versed in the world of television. Using her zany sense of humor and stunning good looks, McCarthy built a career that has taken her from Playboy to MTV, then onto steady work as an actress and eventually a successful career as an author. Her recent jolt into the homes of millions across the country isn’t the usual promotional tour. For the first time she’s promoting more than herself or her product, she’s speaking for and to thousands and thousands of parents.
This might just be what autism needed: a young, hip mom that so many other young mothers can identify with. Someone who’s never been shy and has put their whole self out there for the world to see, but the question had to be clarified. When she was in her 20s, on top of the world, gracing magazine covers, a sex symbol for men all over the world, did she ever think that one day she would be a spokesperson for a cause such as autism?
“I knew something big like this was always gonna happen to me,” McCarthy says, cracking a smile. “I knew damn well this would happen, because I have a big mouth. I remember in my early 20s saying to myself, ‘I’m going to have some big disease to be a spokesperson for or help out in a major way. Please, God, don’t let it be breast cancer.’ That’s what I said to myself. (Now) I wish it was breast cancer, because then at least I know that it would happen to me and not my son.”
It wasn’t breast cancer. McCarthy’s son Evan, now 5, was diagnosed with autism at the age of 2 and a half, but the diagnosis is only a small part of what Evan went through to get to that point. Evan’s story starts just like so many you’ve heard from parents of children with autism. He was a happy baby. He had reached certain milestones, he was loving, vibrant, a cheerful boy, but one morning McCarthy walked into his room to find him seizing.
The next year for McCarthy did not get any easier. She struggled to find a proper diagnosis for Evan. Her son continued seizing and was hospitalized on several occasions. While neurologists couldn’t pinpoint the problem, McCarthy took matters into her own hands. Through some of her connections she was able to see a neurologist who was able to diagnosis Evan in a matter of minutes. McCarthy explains in her book that she had ignored the signs. The hand flapping, the way he played with his toys, lining them up instead of actually playing with them, the way he would spin a wheel for hours, his lack of affection towards others, were all things she misunderstood for idiosyncracies. “I had always looked at it like an adorable Evan characteristic that was cute and unique,” McCarthy says in her book. “I felt betrayed, as if I didn’t know this child standing in front of me. Everything I had thought was cute was a sign of autism. I felt tricked…The things I’d thought were personality traits were in fact autism characteristics.”
It did not take McCarthy long to figure out what her son needed. She tells a grueling story about an appearance on the Live with Regis and Kelly show, where she was promoting Baby Laughs. A few days after the diagnosis, when she really wanted to be home with her son, she found herself in a dressing room across the country. The opening credits began and she heard the announcement that the Notre Dame University football coach, Charlie Weis, was on the show to talk about his autism foundation. McCarthy immediately ran to his dressing room and revealed her story to a stranger for the first time. In the coming months McCarthy would get a huge boost from fellow actress Holly Robinson-Peete, whose 10-year-old son was also diagnosed with autism.
Robinson-Peete explained to McCarthy that there was a window of opportunity where she could pull her son out from the window and get him on the road to recovery. “I wanted to save my boy,” McCarthy says. “But when I first started with this I was not prepared at all. Going public with it was not an option. I didn’t want anyone to know, because I wasn’t emotionally dealing with it yet.
“I wanted to feel comfortable before I shared my message,” she says. “I didn’t want my message to be, ‘Oh no, all these kids are screwed up’ or ‘Hey, autism is on the rise.’ They know! So I wanted my message to be, ‘here’s how to get your kid better.’ And I know that’s what I’m doing.”
So just how did McCarthy help her son recover? She credits several reasons for the remarkable change in Evan. Most importantly she fought to find the right services through early intervention. Applied Behavior Analysis was a big part of Evan’s everyday routine. Practicing it herself, using re-enforcements, she saw steady improvement. He started to form full sentences and was able to communicate what he wanted. In a chapter titled “Crazy Evan,” McCarthy explains that for a long time she would give in to her son, without him verbalizing exactly what he wanted. “This is not something you should do,” she writes. “It’s giving in to autistic behavior, but when it happens every day and you cannot listen to the screaming anymore, you give in to your child’s demands.” Giving in to her son was not working for her, so she decided to take a break from work and concentrate solely on working with Evan.
McCarthy says that with the time off she attended the “University of Google” and relentlessly researched autism online. In her findings on the internet and her new friends in the autism community, McCarthy discovered the Gluten-free, Casein-free diet, B12 shots, chelation therapy, the autism/mercury connection and candida. Evan had an overload of yeast in his body. She started treatments with Dr. Jerry J. Kartzinel, who is a DAN doctor and wrote the introduction in her latest book. She credits Kartzinel for starting her son’s biomedical recovery.
“Everyone can tell in their internal bullshit meter what is real and what is not,” McCarthy says about learning about alternative treatments. “No one else is offering me any help, and these guys are. I’ll go where there is hope.”
McCarthy says getting the medical industry to accept the route she chose for Evan is her goal. She believes that her son is now in recovery, and it was due in large part to alternative treatments not offered by conventional medicine. She feels that enough time has passed and there is substantial information for organizations, such as the American Academy of Pediatrics (AAP), to start listening. “I called them,” she says. “I told them, the time is now. They responded finally. DAN has existed over 10 years and for the first time this year they finally showed up to a conference, all because I told them basically, ‘Game on!’”
Back at her hotel suite, Spectrum asks about that power. How does it feel being able to make that phone call and get a response? There is a long pause before she says, “I don’t know if I’ve ever stopped to think about it.” McCarthy pauses again. It might be the first time she’s felt the full responsibility of what that actually means.
“It feels good knowing I can do more than tell poop stories,” she says sheepishly, cracking a smile again. “This is something that can really transcend the autism community, by getting the AAP on our side and their response was better than I could have ever day dreamed about.”
Unfortunately, she says, the process will not occur overnight. “Baby steps, I wish it could be in a couple of months, but it’s going to take a little bit of time,” McCarthy says. “I’m hoping by me publically putting pressure and bringing awareness to this, it will pressure them to come up with ways to work with us. I’m scaring the shit out of the bad guys to turn them into good guys and if it’s gonna make Darth Vader turn into Yoda, I’ll do what it takes.”
Another very important piece to Evan’s recovery was meeting her now close friend and founder of TACA, Lisa Ackerman. “Speaking of Yoda, Lisa is the Yoda of autism,” McCarthy says. “It felt right talking to her, like she was part of my path. In the long run I knew that I would be working with her for the rest of my life.”
Ackerman met McCarthy four months after Evan was diagnosed. “There are a lot of great organizations, but this one specifically deals with the grassroots of where we need the most help,” McCarthy explains. “Who’s the person you call when you get the diagnosis? She’s that person. TACA is the organization you should call. Her system and organization (works in California), and I hope I can bring that to people’s attention nationally.”
She’s not shy when she talks about national organizations like Autism Speaks. As a mother, McCarthy is very respectful of their awareness campaigns and the attention they have brought to autism, but she has some issues with the way they do business. “It kind of saddens me, that all that money is going to awareness and/or research that we don’t really know about, when I’d rather see all that money or some of that money going to families. I don’t want to go into anything with conflict. I just want to offer hope and get people help. But they have the money. I want to show them some other great ways to spend their money.
“They don’t believe in biomedical treatment… I think because of their corporate connections they are worried about talking about the vaccine link,” McCarthy says. “Someone needs to say it. So why not now?”
McCarthy says Evan was vaccinated, and while she doesn’t regret letting her doctor give her son the MMR vaccine, she did oppose the shot when it was time. When her son was diagnosed, she immediately flashed back to that moment. “I remember reading about it and thinking this is the autism shot; I don’t want to give him this shot. When I told my doctor he said to me it was bullshit and a desperate attempt by mothers to blame autism on something. I don’t regret it because now everything has happened universally and perfectly. I can’t take anything back.
“I know the destiny now,” she says. “If Evan had to go through what he went through to help so many people, then I understand.”
For more information on Jenny McCarthy’s efforts please visit TACAnow.org.
Physical Activity & Movement Development in Early Childhood
