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.

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.

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.

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.

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.

Autism Society of America has a nice Halloween guide for kids with autism spectrum disorders on their website.

I have to admit we won't really be doing anything for Halloween at our house except answering the door for trick-or-treaters (assuming I get to the store in time to buy candy!). Bridget doesn't "get" the concept of trick-or-treating, won't eat candy, and is not very into dressing up. My husband and I aren't huge Halloween fans either, so we don't miss it.

The last two years she celebrated Halloween with her class at school with costumes and parties. In Pre-k she was mixed in with more typically developing kids who were speech delayed. The "typical" kids loved Halloween and were thrilled to dress up and have a party. The couple of autistic kids just kind of went along with it.

One problem with dressing Bridget up is that she won't tolerate the cheap polyester fabric that most Halloween costumes are made of. Last year, I solved that problem by getting her a ballerina leotard and slippers in the real kids clothing section at Target. She loved being a ballerina and pretending to dance during the festivities at school. For a little while. But then she was done.

I was surprised to hear from the teacher that this year, with Bridget in a class with all autistic students, that they wouldn't try to celebrate Halloween. But when she explained why it made total sense. She told me that her first year teaching an autism class they had tried to do a party for the kids by ordering pizza for lunch. When they were done with the pizza, the kids wanted to go to the cafeteria for lunch – because that is what they always do. It was their routine. Autistic kids thrive on routine. Why take that away from them for a holiday that is based on playing pretend that they won't get excited about?

So call our family Halloween grinches if you want, but we'll be just having a normal day on Friday. Happy Halloween to everyone else though!

Hmm, not hard to see where my 5-years-old and still eating Gerber baby foods daughter gets it, is it?

I've heard it described that picky eating and some other things in autism may be the result of over-sensitive senses of smell, vision and hearing, that these senses pick up more than data than most people can. I can completely relate to that description.

Foods that my husband eats – that in fact, a lot of people eat – like boiled eggs, peanut butter, and fish,  are so strong smelling to me that they are nauseating. Wines that my husband can drink and detect subtle flavor hints in literally "burn" on my palette so much they hurt to drink. 

I share this for several reasons. First, my own over-sensitive palette makes it easier for me to understand my daughter's eating issues. So for that understanding, I am grateful, even though I know I miss out on a lot (and sometimes finding things that I like to eat in restaurants can be a pain).

It also makes me incredibly aware of how many autism symptoms are simply extreme forms of things that we would accept as 'quirks' in less extreme form. I'm an incredibly picky eater, but at least I'll eat a slice of pizza if you put the right thing on it – so I'm classified as "normal". My 5 year old is such a picky eater that she won't eat anything but Gerber 2nd & 3rd foods, and a couple of specific dry snacks. That makes her autistic. It's all a matter of degrees. There's a little bit in all of us though. 

I'll take an order of fries, thank you. And I'll share them with my daughter when she's ready for them.

The episode's "Weekend Update" segment featured a piece about a new trend emerging that parents who are opposed to vaccinating their children are turning to homeschooling, to avoid school vaccination requirements.

The story concluded with a one-liner by Weekend Update anchor Seth Meyer that proclaimed the next big trend to be "dying of polio".

How ridiculous is it that the most sane and scientifically grounded thing I've seen on this topic in mainstream media lately had to come from Saturday Night Live?

…she also understands special-needs families. She understands that autism
is on the rise, that we’ve got to find out what’s causing it, and we’ve
got to reach out to these families, and help them, and give them the
help they need as they raise these very special needs children.
       
   
       
            

She understands that better than almost any American that I know. I’m proud of her.

"She understands that better than almost any American that I know." Apparently John doesn’t know many families of children with autism then if he thinks that someone who isn’t a parent or educator of autistic children understands this issue better than anyone else he knows. Because that is where the real understanding of autism lies – in the community who loves and cares for children with autism everyday.

I do not think that Sarah Palin is qualified to advocate for MY child just because she is also a parent of a child with a very different disability.

First off, her child is only a few months old – she has NO experience yet with the educational system as it applies to even her son’s disability, let alone anyone elses’s, and won’t have for quite a few years. And the challenges of educating a child with a disability have to be experienced first-hand to be truly understood: school districts that flout the law entirely, school districts that offer care (but inappropriate care), school districts that are well-meaning but underfunded…the list is endless of the problems in our educational system for kids with disabilities and Sarah Palin has yet to even dip her toe in the water of that cesspool as a parent – and won’t for about four or five more years.

Second, Down’s Syndrome doesn’t come with the same insurance issues that autism does.There are some, but the ones that come with autism are more extensive. Palin is part of what I am sure is a robust state government health insurance program that covers her and her son’s disability fully (since that is not usually a problem with Down’s Syndrome in group plans). She will probably never experience a situation like most autistic childrens’ parents experience where even the so-called "best" insurance plans won’t cover a dime of their child’s treatment (except in the few states which have now passed laws to force coverage). She won’t have to watch valuable days, weeks and months slip by of early intervention time for her child while her child receives minimal or no treatment because the insurance company has deemed her child’s condition uncovered.

So, sorry Senator McCain, the fact that Sarah Palin has had a Down’s Syndrome child for a few months does NOT qualify her to speak for the millions of parents of children with autism. It’s a different disorder, and we’ve had years, some of us decades, of experience with this issue at different levels. It may give her a special empathy for the difficulties of life with a special needs child, but it doesn’t make her an expert on the needs of those families.

A better answer, Senator McCain, would have been to say that you understood that there was a desperate need to do something about autism from both a research, educational and insurance standpoint, and that you would turn for guidance to the experts – to the people doing excellent research on autism, to the advocacy groups like Autism Speaks and the Autism Society of America – for guidance on what families with autism needed.

Chew’s comments are well put in the interview and I believe they get to the heart of the concerns that many (not all, but many) parents of autistic children have expressed over McCain’s response to the question. She also has more material up on Autism Vox about the debate comments and response to them from a variety of sources. It’s definitely worth taking a look at.