Advocates suspect autism in Travolta case
January 6th, 2009
From the Boston Herald:
John Travolta and his actress wife Kelly Preston have refused to address swirling speculation that their son, who died Friday, had autism, saying only that he suffered from a childhood ailment that some have linked to carpet-cleaning fumes.
Since Jett Travolta, 16, was found dead at the family’s Bahamas vacation home Friday, apparently after suffering a seizure, autism advocates have urged the family to turn their tragedy into a teaching moment about autism-related seizures, which can affect up to 30 percent of autistic kids, usually during puberty.
… Travolta and Preston have dodged autism talk about their son for years, even as Travolta’s brother, Joey Travolta, produced an autism documentary and started an autism advocacy group.
Travolta and Preston have said publicly that their son had Kawasaki’s disease, an inflammatory disorder. Experts say seizures are not a characteristic of Kawasaki’s disease.
See also an interview by Scientific American with Walter Molofsky, chief of pediatric neurology at Beth Israel Medical Center in New York, about Kawasaki syndrome and its possible role in Jett Travolta’s death. An excerpt:
“Kawasaki syndrome is not believed to be one of the etiologies of autism. Autism is a congenital, neuro-developmental disorder, which means you are born with it. It emerges between ages one and three. Because it starts during early infancy and because these children can look normal initially, a whole host of things have been attributed to causing autism: vaccines, infections, lead and other toxins. And because we can’t point to a cause of autism, there’s an impression that these temporally related issues must have caused it.
“What happened in this case is that, unfortunately, this child probably had an episode of Kawasaki disease and, because it occurs between ages one and three, that was a time they noted neuro-developmental disorders, and seizures are more common in autistic children. I never heard of Kawasaki syndrome as a cause of autism till I read about Jett Travolta [allegedly having the disorder].”
(Travolta family in Reuters photo)
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January 12th, 2009 at 8:59 pm
Seizure disorders are commonly associated with many developmental disabilities. As a child I was diagnosed with Epilepsy (petit mal; partial complex seizures), yet had no developmental delays.
My point is he very well have had a developmental disability, but it may not have been autism. It’s also possible (however highly unlikely) that he had no developmental issues. Either way, it really is no one’s business.
Yes it is wonderful when celebrities, like Jenny McCarthy, use their fame to raise awareness (particularly when it comes to developmental disabilities because it creates understanding and helps to educate), it is not their responsibility. Their responsibility is to their son and family, first and foremost.
I realize that many attribute their reluctance to discuss details to their religion, but I doubt that is their reason. Maybe I’m just naive, but I tend to believe that they wished for their son to be recognized as just Jett Travolta the person, rather than identified by a “condition”.
Maybe they didn’t feel it was best for their son to have his name, his face, his personal medical issues on every magazine cover. I’d like to believe that they were keeping their personal, family life private simply because it was best for their family (especially their son).
January 9th, 2009 at 6:31 am
I disagree that Jett Travolta’s family should be pressured to discuss or address issues that others of us focus on in advocacy or education.
There are individuals with disabilities in every community who are teaching their neighbors, coworkers or classmates more about themselves one by one than the most active parent advocates can express through writing stories or speaking through huge media outlets.
If Jett Travolta had collected a diagnosis or two more than those his family has mentioned, what positive difference could it have made, for him (or his sister), to have his parents’ decisions second-guessed in public as he grew up?
It is presumptuous to think we have any right to invade their privacy just because he might share a diagnosis with some of our sons or daughters.
I don’t believe we have the right to demand access to the private lives of mainstream children of celebrities as they are growing up. Even if I did, I could certainly not expect a family that has so recently lost a child to satisfy those expectations.
It should be a personal choice for celebrities as well as wonderful ordinary people to open up parts of their lives to public scrutiny and discussion, to raise awareness about childhood disabilities and create better opportunities for our sons and daughters.
January 7th, 2009 at 6:38 pm
First the Travoltas must grieve, then they need to face the facts. Seizures are related to autism as well as other mental challenges. I am a mother of an 18-year-old young lady, who used to suffer from a seizure disorder. She has since grown out of the seizures but it is still evident in any EEG.
She will always have abnormal EEG’s and she will always be mentally challenged. I’m not afraid of telling people I meet about her challenge, I embrace it, just as I embrace her. My daughter is not called Mentally Challenged girl. She has a name, a personality, and a will of her own.
She teaches others about her challenge. Others learn from her just how wonderful individuals such as herself are in the real world. She’s proud of who she is and Jett Travolta was proud of who he was. Embrace it and be proud of who they are.
Through their actions they can teach others about their disability, or perhaps they look at it as their ability. I’m proud of my daughter and of all her accomplishments. I’m sure the Travoltas are just as proud of Jett’s accomplishments as well. Mr. Travolta, shout it from the mountaintops, teach others about Jett. Show them what the wonders of his life were.
January 7th, 2009 at 4:03 am
If the Travolta family chooses to refer to Jett by his name only, or his name and that he was a great son, much-loved brother, wonderful companion — that is something that is nobody else’s business, whether he could have had a diagnosis or two, or not.
I don’t think it’s a far jump from People First language to People First and Last language.
What happened to enjoying news stories about our sons and daughters with Down syndrome that don’t mention Down syndrome, just their accomplishments?
It’s an odd double standard for advocates if they do believe Jett had some characteristics, behaviors or challenges in common with their children with the diagnosis they wish to use to label Jett Travolta.
Also, families whose children have been or will be diagnosed with Kawasaki Syndrome should not be subjected to the continual references in the media to unproven links between carpet cleaning chemicals and Kawasaki disease.
That is what medical professionals should clear up in the media — especially since I have not read that any studies have been done that rule out Kawasaki syndrome being linked to autism spectrum disorders or other neurological conditions, although I tend to think that if many children who had Kawasaki disease had shown signs of autism, research would have been done in that area.
Parents of children with any chronic health condition or developmental disability should understand that no matter how little scientific evidence there is that links a disability to a preventable cause, we worry over what we might have done differently that would have reduced or avoided any risk.
My son developed insulin dependent diabetes when he was seven years old. Every single wild hare of an idea I’ve ever read or heard about possible causes of type one diabetes is burned into my brain along with a list of ways I could have avoided every one. I know better, but I can’t talk myself out of believing I could have done something different and spared him the challenges he has faced.
My heart goes out to the Travolta family. Jett should be remembered for who he was and not the labels or medical conditions that may have challenged him, including seizure disorder and Kawasaki syndrome. Have a heart, people, please.
Kawasaki Syndrome http://www.bellaonline.com/articles/art60133.asp