Susan's Blog

Tuesday, January 6, 2009

No Show

I think the Today Show opted for a report from the Bahamian Health Minister, rather than my take on autism and the family, because they all seem to feel at this point that the cause of death of Jett Travolta was seizures, and that the Travoltas did try to treat him (with Depakote). So, may he rest in peace.


A little disappointing that we don’t get to see your take. The show’s loss.

— added by Sumana Harihareswara on Tuesday, January 6, 2009 at 8:53 am

Wow – Susan, I want to hear your take, autism and shame is an important topic, in and of itself, but I think you may have avoided a major shitstorm here, to use a technical term.

I have to give a tour, but I would love to hear your and other folks take on the shame aspect. Lord knows I have input, but hey no bruises this week! Hooty hoo!! Lisa

— added by Anonymous on Tuesday, January 6, 2009 at 10:52 am

The issue if the family did not disclose their son had autism; I am surprised that the Today Show considered that angle.
From an advocacy perspective it seems like an opportunity may be lost with a celeb lending his name and exposure to the subject, however from an “it’s personal” vantage, it is none of our business.
Weird, I agree with the former Anon that you avoided a hoo-ha.


— added by Anonymous on Tuesday, January 6, 2009 at 2:27 pm

i, too, am curious to hear from you susan. i respect your take, always full of truth and soul. i am conflicted. to lose a child is tragic-my heart goes out-and my intellect gets mad at the utter
avoidance of autism-then i get sad-blessings to you – and…..i totally dig those boots, sister.

— added by Anonymous on Tuesday, January 6, 2009 at 3:05 pm

I, too, would have liked to hear your thoughts.

I just wish if Mr. Travolta and Ms. Preston were going to choose to blame a disease that it was one that has an actual public health implication and could use the publicity, such as Lyme Disease or diabetes. Kawasaki? That’s insulting.

May their son rest in peace. — Cathy in CT

— added by Anonymous on Tuesday, January 6, 2009 at 4:54 pm

I have no issues with a family or a person refusing to be labelled with Autism.

The label (as the OT Coordinator says) is good for one thing and one thing only.


If the services are not required or obtainable through another route… there’s no need for the label.

Except that special interest groups want their name (Travolta, Bill Gates) to go with their brand. That is the only reason, the ASD community (cure or neurodiverse) care what the Travolta’s did or didn’t do.


— added by farmwifetwo on Wednesday, January 7, 2009 at 7:51 am

Perhaps the Travolta’s just were making sure that their son’s privacy rights were respected all of these years by not announcing his label of autism over and over again, writing books, giving interviews discussing his disability in detail and on and on unlike Jenny McCarthy who seems to view her son’s diability as a real money maker.

— added by Anonymous on Wednesday, January 7, 2009 at 8:58 am

That, Anon, is what I said in the interview. I think that parents don’t necessarily disclose a child’s diagnosis for basically two reasons: 1) they feel that their child is not quite ready to fully understand what the term may mean for him (child is simply not ready emotionally or developmentally to be told); or 2) they want their child to have every opportunity in the mainstream and they believe that to disclose the disability might cause others to treat him as less-than, or to judge him, etc.

Basically I think it is every parent’s right and every person’s right to keep this info to themselves as long as the child is getting the supports and services he needs.

— added by Susan Senator on Wednesday, January 7, 2009 at 9:09 am

I also think there is nothing wrong with my having gone public about Nat because I have always been careful not to embarrass him, were he able to understand what I’ve said or written, and I feel that I’ve helped a number of people who need to understand and connect positively with an autism family.

As for making money, I wouldn’t advise going into the writing biz! 🙂

— added by Susan Senator on Wednesday, January 7, 2009 at 9:13 am

I meant that Jenny McCarthy seems to milk it for all it’s worth. I really think what she does goes beyond trying to inform and educate people particularly since what she has to say has been known for many years before her son came along (diets, vitamins).

I do hope the Travolta’s got him the interventions he needed throughout the years. By law they would have had to educate him one way or another but if their residence was considered Florida who knows. One of the worst states for services.

— added by Anonymous on Wednesday, January 7, 2009 at 9:25 am

Maybe the boy would have or did receive an Autism diagnosis, manybe not. The fact is, we and others can only speculate. We didn’t know Jett, don’t know the family, and none of us have any business diagnosing that child or judging his family. I agree with whoever said that the tendency for many of us is to want those in positions of media attention to bring awareness and perhaps funding and research to our cause, but the way some have made careers and $$ out of being an “Autism parent” is troubling and seems insulting to those who are Autistic. This is a good discussion and thanks for inadvertently providing the forum, Ms Senator.

— added by Anonymous on Wednesday, January 7, 2009 at 12:25 pm

Not that my comment really matters at this point, but I absolutely agree that it isn’t anyone’s business whether autism was an issue here or not but it sounds to me like the possibility of epilepsy or something like that? I don’t know since my son has autism but has never had a seizure. Also, my main gripe with Jenny McCarthy is that she goes on CNN, Larry King Live, etc. and tells everyone that she has now “cured” her son of autism like it is a disease that he “caught” which is no such thing, plus will only lead to more stereotyping of autism.

— added by Sharon L. on Wednesday, January 7, 2009 at 1:18 pm

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