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Wednesday, September 30, 2009

A recent revelation by American actor John Travolta in court testimony during an ongoing extortion case in The Bahamas that his late son Jett suffered from autism, has stirred debate and controversy over the disease. News media and critics have questioned whether Travolta and his wife Kelly Preston should have acknowledged Jett’s illness sooner. In response to comments made Tuesday about the recent events on the ABC television program The View, the National Autism Association issued a press release stating they “very much support the Travolta family and all families affected by autism”.

Travolta’s testimony last week admitting that his son was autistic was the first time he had stated as much publicly; previously he and his wife had only said Jett had experienced Kawasaki syndrome. Travolta’s son Jett died in January 2009 at the age of 16 after experiencing a seizure. “My son was autistic and suffered from seizure disorder. Every five to ten days he suffered seizures which lasted 45 seconds to a minute,” said Travolta in his court testimony on September 22. A piece in iVillage noted Travolta had been pressured for years to speak out publicly about his son Jett’s autism. iVillage cited a 2007 piece in the New York Post, where a source commented “He could do so much good for autism awareness if he would just come forward.”

News media and critics have suggested that Travolta and his wife’s allegiance to Scientology was behind their rationale for not previously acknowledging that Jett was autistic. The Church of Scientology opposes psychiatry and does not recognize autism as an affliction. Church representative Tommy Davis had told MSNBC that “The Church of Scientology has no position on autism,” however a Scientology-founded organization the Citizens Commission On Human Rights stated to the United States Senate in 2008: “The Citizens Commission on Human Rights believes that there is no known medical treatment for autism except off-label drugs.”

Former Scientologists Tory Christman and Claire Headley were interviewed about the recent revelation by Travolta for The Daily Beast, and commented on its implications. Christman suffers from epilepsy, a condition which also causes seizures. She told The Daily Beast that the Church of Scientology pressured her to go off of her seizure medications, and instead take “vitamins and supplements”. After doing so, Christman experienced a grand mal seizure and knocked out two of her teeth in the bathroom. Headley, who has filed a lawsuit against Scientology for labor-law violations, told The Daily Beast that the only techniques that Scientology would have sanctioned to help Jett would have been internal procedures known as “assists and objective processing”. Church representative Tommy Davis responded to The Daily Beast: “This religion is utterly and completely about helping. It’s just insane to think that Scientology would be a factor in somebody not getting all the help they need.”

ABC News reported Tuesday that the president of the National Autism Association (NAA), Wendy Fournier, stated those that had experience with autism awareness had previously recognized signs from media video that Jett Travolta suffered from the disease. Fournier commented: “It didn’t really come as a surprise for people. But I’ve read some things that really bother me – basically that they should have come forward sooner. Everybody handles autism in the best way that they can and for whatever personal reasons they had, they chose not to make it public. Just because you have a child with autism and you’re a celebrity, it does not automatically mandate you to be a spokesperson for the disorder.” Another official from the autism community, the national manager for Talk About Curing, Autism Rebecca Estepp, said to ABC News: “The Travoltas are suffering right now from a tragedy that could affect anyone. … We’ve heard of several children passing away with seizures lately.”

On Tuesday’s edition of the ABC television program The View, co-host Whoopi Goldberg commented on the statements made by the representative of the National Autism Association to ABC News about Travolta’s admission of his son’s autism. “Since John Travolta has testified his son Jett was autistic in this blackmail case, the National Autism Association has come out saying they didn’t expect him to be a celebrity spokesperson for autism, but he should have come forward sooner,” said Goldberg.

The View co-hosts proceeded to discuss whether Travolta should have publicly revealed his son’s ailment earlier, and the impact of labels in society and the media. Sherri Shepherd commented on the negative impact of labeling individuals, and guest-host Gloria Estefan remarked: “I don’t like labels, period.” “I guess what is stunning to me is that anyone has the right to expect you to say anything about your family,” said Goldberg.

“Isn’t it partly that he’s a Scientologist and that there’s a reputation that Scientologists don’t believe in diseases of certain kinds?” asked co-host Joy Behar. Goldberg asserted that it was the individual’s decision whether or not to speak publicly about such an issue. Shepherd pointed out that celebrity actress Jenny McCarthy has spoken out publicly about autism, which her son suffers from, and noted that her voice has helped to focus public attention on the disease.

Behar questioned Travolta’s earlier statements that his son had Kawasaki disease: “The thing about Travolta though – he called it Kawasaki disease. Did he know that it was autism, and just said it was Kawasaki – was he making that up? I don’t know.” Goldberg said: “This is not the way to get people to come out and say, ‘You know what, I’m going to take a stand.’ It’s just, it’s none of your business until somebody wants to make it your business, but that’s just me.

After the program’s broadcast, the National Autism Association came out with a press release Tuesday, in response to statements made on The View. “The National Autism Association stated today that they very much support the Travolta family and all families affected by autism”, said the press release. The NAA clarified that the statement made to ABC News by its president Wendy Fournier was the opposite position of that quoted by Goldberg, asserting that it was taken out of context. “I agree with Ms. Goldberg, the Travoltas, like any other family struggling with the illness of their child, are entitled to their privacy. I have read hurtful, judgmental comments from individuals as well as organizations, suggesting that that the Travolta family owed it to the autism community to use their celebrity to bring awareness to the disorder. I couldn’t disagree more,” said Fournier.

The organization’s board chair, Lori McIlwain, commented in the press release: “NAA is here to support families and fellow parents. This debate does not serve anyone. As a nation, we need to instead focus on helping those affected by autism, which now affects 1 in 100 children.” According to the release, the organization was founded in 2003, and is one of the largest in the United States. The NAA’s mission includes educated families about autism and neurological disorders.

Cleveland, Ohio-based University Hospitals Case Medical Center child and adolescent psychiatrist Dr. Marcie Hall said that according to studies one fourth of autistic children may concurrently have seizure disorder. The director of the Comprehensive Epilepsy Management Center at New York City’s Montefiore Medical Center, Dr. Shlomo Shinnar, stated: “In neurologically-normal children with epilepsy, the risk of death is actually no different than for children without seizures.”