Café Autism

Should it matter if Jett Travolta had autism?

Since the tragic death of John Travolta and Kelly Preston's 16-year-old son Jett at their home in the Bahamas on January 2nd, rumors have swirled about what was actually wrong with Jett. These rumors include repeated reports that Jett was autistic. Is it any of our business? Does it matter?

The Travoltas have spoken publicly about Jett's illness with Kawasaki Syndrome when he was a small child. It's also my understanding that they have publicly discussed that he had a history of seizures.

None of those things explains why a 16-year-old was being supervised by two nannies in the family's home when he died. None of these things explains the statements made by a family friend, actress Anne Archer, to People.com, where she describes Jett as being observedly significantly mentally handicapped.

So what does explain those things? Widespread rumor has it that Jett was probably autistic. If this was the case, I believe the Travoltas did a disservice to the cause of people like their son by hiding his condition. If they had discussed nothing about his health to preserve his privacy, that would be different. But by selectively revealing some things and hiding others - including it appears that he had autism or another developmental disability - they sent the message that those things were embarrassing and should be hidden. Whether this lack of disclosure was due to the family's belief in Scientology doesn't really matter. The results were still the same.

I'm horribly sad for the Travoltas about the loss of their precious son. But I'm also sad for them that they apparently felt the need to hide the truth about him while he was alive. If they had chosen to share, I'm sure they could have served as an inspiration to many people, and found support from other families like theirs - support like they've said they are very appreciative to be receiving now. I'm sorry they missed out on that. Because no matter how famous you are, being a special needs parent is challenging, and we all need the support of our community to get through this.

Dear Santa...please tell me what to get for my child with autism

In the past few days, like a lot of parents, I've started my holiday shopping for my daughter. Or at least tried to. This is one of those times that the differences between Bridget and "normal" children becomes extremely apparent.

While most parents (especially of children similar in age to her - five) are trying to trim down their childrens' wish lists and get their expectations for gifts from Santa in line with reality, I have the opposite problem. Bridget doesn't make a holiday list. She doesn't seem aware that Christmas approaching means gifts coming soon. And, she barely plays with toys at all. This makes her incredibly hard to shop for at her birthday and Christmas. Shopping for her is a real challenge.

Between the fact that she is an only child and that her grandparents on both sides live locally, Bridget has a good group of people who would love to spoil her with gifts on Christmas morning. But I struggle to come up with even a few ideas that I know she will actually appreciate and enjoy because of her narrow interests, especially her lack of interest in imaginative play.

Yes, I know a lot of parents would be thrilled to have a child who didn't care how many gifts they got under the tree, but you know what? I would love to have their problem because it would be so normal. I would love to be able to shop in a toy department & have to narrow down selections of what I can afford to get my child or what is reasonable to get a child who already has too many toys, instead of having to work hard just to find anything that I think she will be interested in at all.

As a result, to fill out the bottom of the tree, Bridget gets a lot of gifts that other kids would probably consider "lame"...clothes and books. Fortunately she loves both of them (unlike many kids with autism she seems very aware of her appearance) and so they make fairly successful gifts. We all just wish that we could spoil her with toys, though - dolls, stuffed animals, games and all the things that we loved growing up. 

This year so far (shh, don't tell!) she'll be getting a robe and PJ's, and a Leapster. I'm also giving her a couple board games (Candyland and Memory) as an experiment to see if we can help her learn to play "big girl" games. I'm hoping to come up with a few more brilliant ideas in the next few weeks. I hope.

And I hope that those parents struggling to talk their kids out of asking Santa for a whole sleigh full of presents appreciate how lucky they are to have to do that, and to be able to participate in this annual ritual with their family in a way that our family can't.

Where is the switch?

Bridget goes through what seems like "fits and starts" in her development. She will seem stuck in the same place for awhile, making no progress despite all the attempts we make and her school staff makes to move her forward.

Then, just when we are exhausted from beating our head against the brick wall, and when we start to be afraid that she will never start to progress again, suddenly it happens.

Suddenly one after another, new things start to spring out of her. Like dominoes falling, it seems that one new thing just leads to another and another and another. Until suddenly it stops again.

We've been going through one of those episodes recently. It started like someone flipped a switch. I know that eventually it will stop the same way.

I wish I knew where that switch was. It would be wonderful to be able to turn it back on when it gets turned off.

Watching her make progress like this is amazing. It gives me hope for her future. That hope helps get me through the days of frustration of diaper changes on a 5 year old and wondering about whether she will ever eat a slice of pizza with us at dinner instead of Gerber purees.

She's just learned to start answering certain types of questions...will she learn the rest before suddenly the pause button gets hit on the process? I don't know.

We'll just have to make the most of the time we get before that happens and we're stuck in pause mode again, I guess.

The Many Beautiful Faces of Autism

I just finished approving a bunch more photos for the Café Autism Flickr group! If you haven't visited this group before, give it a look or even go submit your own photos. (I only moderate the group to keep it family-friendly - please feel free to submit your photos!)

We have some members who are wonderful photographers. It is great to see the many beautiful faces of the children we love who share the common thread of a journey with autism.

My Diagnosis: Denis Leary Is An Ass

And I have the qualifications to make that diagnosis - a brain - unlike Leary, who has no qualifications to make the statements that he makes about autism in his upcoming book that I'm sure you've all heard way too much about by now.

Back in one of the pieces I originally wrote about this issue last month I suggested that Leary make his book chapter available online if he really wanted to settle this since he was claiming to be quoted out of context. Autism United (www.autismunited.org) has done just that. So now, I've read the chapter and I can say, I stand by my original evaluation of Leary's attitude toward autism: he's a moron. 

Here's just a sampling of some of the offensive things that Leary writes in the chapter:

• Asperger's doesn't actually exist. It isn't actually an autism disorder, just "an Asshole Who Won't Shut The Fuck Up"
• Autism rates are up because of "parents who wasted time, their brain cells and a lot of healthy DNA on way too many recreational drugs is this doctor's guess"
• Autism rates are up because "inattentive mothers and competitive dads want an explanation for why their dumbass kids can't compete academically so they throw money into the happy laps of shinks and psychotherapists to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a shit what these crackerjack whackjobs tell you---yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
  
• Autism rates are up because "I think the parents don't wanna face the cold hard facts that their joining of the loins has produced a semi-retard with a nervous twitch so they jump on any available train---in this case the autism express---and blame good old Mother Nature."

I used to think Leary was funny - he had a biting, healthy lack of respect for authority and pretense. But somewhere along the line he lost respect for anything. This tone of this chapter (and I can only assume the whole book) is so mean, so vicious, that there is nothing funny here even when he isn't aiming at my child and her peers.

Leary's entire tone seems to have degenerated into a state of hatred of the world, where he sees no value in anything, nothing anywhere worthy of respect or caring. His tone seems hopeless for the future and for those less fortunate than him.

I don't know what happened to him to make him this way but it makes me very sad that he felt it was appropriate to sink to the lengths of turning his internal anger on children who can't defend themselves.