The Jett Travolta controversy just keeps popping up.
In the email "autism" groups that I belong to, people are discussing it. Friends are emailing me articles about it. And so, we keep talking about it, even though knowing any of the answers won't change the result. We keep talking about it because the people in question are celebrities. But these issues pop up in non-celebrity life, too.
Just for a moment, pretend John Travolta and Kelly Preston haven't been involved in Scientology.
Would the questions be the same? (Did Jett have autism? Why wouldn't the Travolta-Prestons become a "spokesfamily" for autism?)
For the first:
Sometime last year, a little boy joined Splig's preschool gymnastics class for a single session. He was unable to follow instructions. He made funny noises. He cried. He giggled. His mother was on the edge of her seat, yet told the other parents that her son was "just a free spirit" and mentioned how she wished the coach wouldn't "require" him to wait in line like the other kids.
My spectrum-alarm was going full blast, but I said nothing. It wasn't my place, even though I wondered if telling her I had "been there" would make her feel more comfortable (but I feared it would make her more defensive.) I didn't know whether she was telling her friends that he is a "just a free spirit" because she believed it, or whether she didn't want to use a label. I don't know whether that child was receiving "help" or not. I thought about how even if he is on the spectrum, that I'd still want the coach to require him to wait in line like the other kids. But I tried to fight back my judgment. And I certainly didn't say anything to the mother, because I didn't know her situation.
After all, I'd be a rich woman if I got a dollar for every time someone had asked me when my son was younger if I had "ever considered" that he might have autism/ADHD. Or every time a teacher, medical professional, or fellow parent asked me why I "hadn't gotten help yet." (Fortunately, such things are in the past now - or at least I hope they are.)
We tried. We got the diagnosis. But a diagnosis doesn't guarantee services. And services do not guarantee that the child is going to improve. Services certainly won't "turn" a child with spectrum-like behavior into a "neurotypical" child.
I knew this as I watched this little boy in Splig's class. On one hand, I hoped that maybe the parents were getting some tips as to how they might teach their child in the best way, but on the other hand I knew it wasn't any of my business. I saw the my child isn't like my friends' children concern in her eyes. She either knew consciously or she didn't.
Diagnosis can be a relief. Oh, so my child IS different than other kids, and that is okay, even if no treatments work.
But that doesn't mean there won't be problems. Other parents will assume that because that child is behaving differently, that obviously the mother is in denial or obviously the mother hasn't "tried hard enough" to "cure" her child. The mom will be seen as an ineffective disciplinarian. Or, if she mentions the diagnosis by way of explanation, she'll either be pitied or people will think she's using the diagnosis as an "excuse."
Did Jett Travolta have autism? Does your neighbor Billy have autism? Does your daughter's classmate have autism? Yeah, maybe. But it isn't your business.
Maybe the parents "know." Maybe the parents don't yet. Maybe they sort-of do. Maybe the parents have tried very very hard to get services. Maybe they haven't. Maybe their child doesn't have autism - perhaps there is another reason their child exhibits spectrum-like symptoms. That reason might be confidential, just as an autism diagnosis might be confidential. Or maybe the child is just a child and had an off day in front of you. Or a child who is developing a little bit slower, so needs services while young, but won't carry spectrum-like symptoms into adulthood.
So yes... perhaps Jett Travolta had autism. Perhaps he didn't. Either way, the label wouldn't necessarily have had any practical result. The Travoltas lost a family member, regardless of the specifics on his medical chart.
--
More on Jett Travolta:
- Jett Travolta: Kawasaki Syndrome, Autism, and a Bathtub.
- Autism-Seizure Misconception
--
Comments (6)
Great post. Seriously. The folks are about to bury their child. That is what matters. Not whether they are buring a child with developmental or medical needs. That they are burying their child.
Posted by Robin | January 8, 2009 9:19 AM
Posted on January 8, 2009 09:19
Just ran across your blog. I'm a special ed teacher and a parent of a child with autism. I agree with you that they ought to be left in peace to bury their child. I get a lot of looks while taking care of my child and sometimes my students. We've begun to smile and wave. I can't figure out what else to do.
Posted by Therese | January 8, 2009 3:43 PM
Posted on January 8, 2009 15:43
Robin: Absolutely! I'd hate to be under so much scrutiny at the same time as I was grieving.
Therese: Thanks for dropping by! I definitely appreciate the presence of folks like you who are on the "front lines" in the educational setting. Your in-class kids are lucky to have someone such as yourself who has at-home experience.
I love the "smile and wave" approach - what a great suggestion! People are curious. Sometimes they are cruel, but most of the time they are curious. I try to keep that in mind if my face burns hot with embarrassment when my son is doing something "off" in public.
Posted by Karianna | January 8, 2009 6:11 PM
Posted on January 8, 2009 18:11
great post! I feel the same way, just b/c they are celebrities doesn't mean they have to be spokespeople! they are trying to raise their children "normal"! whatever normal is!
I am just going thru the process of having one of my 4 daughters tested for ADHD, it is bringing up so many emotions for me and even her, since she is almost 9.
Posted by lala | January 12, 2009 9:14 AM
Posted on January 12, 2009 09:14
Another special education teacher here. I agree that it is a moot point now about Jett Travolta - while I certainly think that they were not being realistic, I don't KNOW this. I also know that every child who exhibits spectrum-like behaviors doesn't necessarily land on the spectrum (and really, it does those on the spectrum a disservice to believe that they do).
That being said, I think parents who exhibit a pattern of denial over time (the "free spirit" and "don't make him wait in line" and "he's just special," which has occurred to students in my class) are truly doing their children a disservice, because while a diagnosis doesn't guarantee them access to services, it makes the access easier. It also provides other caregivers and educators with a better understanding of how to help. And it breaks a pattern of spoiling that is hard to break when they get older! :)
HOWEVER - I guess back to the original point - being a parent with a child on the spectrum does not require a person to be a Spectrum Parent, so to speak. Regardless of celebrity. And now, with Jett gone, this is hardly the time to start picking apart his life.
Hope this makes sense!
Posted by Kim | January 12, 2009 7:43 PM
Posted on January 12, 2009 19:43
LaLa: Best of luck to your daughter -- these things are tough.
Kim: I definitely agree that there is that line between over-diagnosing and ignoring - so yes, parents in denial can be just as much of a problem as parents who attribute every single misstep of their child to some disorder "out of their control." Bless you for being a SpEd teacher -- I don't have the patience!
Posted by Karianna | January 12, 2009 8:36 PM
Posted on January 12, 2009 20:36