Wednesday, April 02, 2008
Living with Autism
Special to CNN
Editor's note: Jenny McCarthy and Jim Carrey are actors and parents actively involved in autism-related causes. McCarthy is the author of the book "Louder Than Words: A Mother's Journey in Healing Autism."
Actress Jenny McCarthy believes that vaccines could have contributed to her son's autism.
(CNN) -- In light of the recent Hannah Poling decision, in which the federal court conceded that vaccines could have contributed to her autism, we think the tide is finally turning in the direction of parents like us who have been shouting concerns from our rooftops for years.
Autism is a debilitating disorder, which according to the Centers for Disease Control and Prevention, is suffered by 1 in 150 kids, making it more common than childhood cancer, diabetes and AIDS combined.
Recently, England and Ireland reported that autism is affecting one in 58 individuals.
Is it any wonder that autism has become many new parents' No. 1 fear?We've met some of the most amazing moms and dads who are forging their own path to prevention and recovery. When our son, Evan, was diagnosed with autism we were lucky enough to benefit from their knowledge and experience. Evan has been healed to a great extent by many breakthroughs that, while perhaps not scientifically proven, have definitely helped Evan and many other children who are recovering from autism.
There are some who wonder what we mean when we say "recovering" from autism. They confuse the word recover with cure. While you may not be able to cure an injury caused in a terrible car accident, you can recover; you can regain many skills that you once lost. In the case of autism, we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist. Even though we may no longer see any symptoms of autism, we can't say a child is "cured" because we do not know what they would have been like had they never been injured.
We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this."
Evan is now 5 years old and what might surprise a lot of you is that we've never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed -- that he never had autism to begin with. It's as if they are wired to believe that children can't recover from autism. Watch CDC chief on vaccines, autism »
So where's the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven't arrived. Most of the parents we've met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child's autism.
We think our health authorities don't want to open this can of worms, so they don't even look or listen. While there is strong debate on this topic, many parents of recovered children will tell you they didn't treat their child for autism; they treated them for vaccine injury. Read about latest fight over vaccines and autism
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!The opinions expressed in this commentary are solely those of the writers.
NEW YORK (CNN) -- He's only 5½ years old, and yet he's practically memorized the entire New York subway grid. He reads at the fourth-grade level, plays two-handed piano compositions and is better versed than most adults about the Fibonacci code, a complex mathematics sequence.
Dylan loves Italian music and draws pictures that artist Jackson Pollock would be proud of.
He also happens to be autistic.
Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted one of the largest sperm donor banks in the country.
The sperm bank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper. He liked music, loved to travel and had a high IQ and a degree in economics.
What she couldn't know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed.
The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component, making a child predisposed to autism or responsive to an environmental trigger.
"It's a combination of being genetically vulnerable and then having some kind of social or toxicant exposure that tips you over," according to Dr. Gary Goldstein of the Kennedy Krieger Institute.
Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.
Until then, Geri Dawson, chief science officer for the Manhattan-based advocacy group Autism Speaks, says there's no way to screen for those genes and prevent them from being passed to a child.
"We wouldn't be able to screen a donor for autism because we don't yet know the specific genes that are contributing to autism," Dawson said. "But there is a lot of research going on, and I would say in the next five to 10 years, we will have identified between five and 10 genes that we know raise the risk for autism."
Once the autism gene or genes have been identified, it would theoretically be possible to screen for those genes, according to Dawson.
Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.
"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."
Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."
Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.
Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son.
"He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues," recalled Jackaway, who immediately suggested screening Joseph for autism.
"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said. "I didn't know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK."
Pergola says she was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."
She says Jackaway reassured her that wouldn't be the case.
One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.
"She was terribly upset," Jackaway remembered. "That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future."
In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.
But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?
"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."
Pergola says she's still uncertain about an autism screening process, if and when it becomes available.
"It can go either way. On the one hand, it could be helpful so that people could make choices about what risks they want to take," Pergola said. "On the other hand, it's like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It's hard to say. It's really hard to say."The families don't blame the sperm bank. Since the discovery of autism in the families that used Donor X, his samples have been removed and are no longer available for reproduction.