Category Archives: In the News

A Welcome Dose of Reality

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Here’s another installment of “Celebrities and ASD,” this time from the world of sports. It seems that former Red Sox pitcher Curt Schilling has a son with Asperger syndrome. He and his wife, Shonda (gotta love that name), wrote a 2010 book about their journey entitled The Best Kind of Different.

“Well, that’s special,” you might say. “Another Jenny McCarthy-like figure talking about how wonderful her child is and how her life has been transformed by this beautiful but different, otherworldly being entrusted to her care.” But you’d be wrong. At least from the Schillings’ interview on the Today show and a more extensive interview they gave to an online sports journalist named Maury Brown.

Here’s what I liked about the Schillings’ story. They’re willing to be real. Shonda (ooh, that name again) is very up-front about the seven years she spent not knowing that their son, Grant, was different. How she didn’t get his lack of responsiveness to her parenting. How she would yell and scream at this kid who seemed to disregard her every command. How she would get really angry at her on-the-road husband for not being around to help her with this “difficult child.”

And then there’s Curt’s admission that he really had a hard time relating to his son—and that he still has a lot of work to do on their relationship. The kid is so intense emotionally—both positive and negative—that he didn’t know what to do with him. He talks about trying to discipline Grant over the phone: shouting at him via long distance, threatening him with loss of privileges, trying to knock some sense into him verbally, all to no avail. Mind you, Schilling is known for speaking his mind pretty bluntly, and his unguarded comments in MLB circles have gotten him in trouble a few times. So it kind of fits that he would be just as direct with his children.

But oh, the reality that this couple brings to the conversation! I love that, because it isn’t easy, and parents are only human. Even after having learned that Grant is on the autism spectrum, they still have tough days—a very important insight. Knowing doesn’t change everything. It takes time and effort to change your expectations. It takes time, and trial and error, to learn how to roll with the punches. As Curt said, every day is like a jack-in-the-box. You don’t know what kind of kid is going to wake up each morning: Mr. Flame-Throwing Grumpy Gus or Lil’ SweetPea the Emotionally Needy Klingon. But they’re learning. They’re adjusting. They’re trying their best to figure the whole thing out and to do right by their son. And this a full three years after Grant’s diagnosis!

I can’t tell you how refreshing it was to see the video and read their interview. It’s so refreshing to know I’m not the only one who can lose it with my kids. Or that I’m not the only one who still doesn’t get them all the time—after all these years. Or that I’m not the only one who has to take a break every now and then lest I get wound so tightly that I snap. Or that I’m not the only one who forgets that all they’re doing is being themselves, being autistic in their own unique ways.

Because really, sometimes it just plain sucks. Every emotion is writ large. Every variation from routine is a potential explosion. Unless of course it’s the kid wanting to change the routine. Then it absolutely has to happen according to the newly announced plan. Every teacher needs a lesson in ASD. Every excursion, even to the flippin’ grocery store, is fraught with peril. Sometimes it just gets to be too much. And that’s why I’m so glad to know that folks like the Schillings are around: real people who don’t mind being honest about how hard it can be.

Why I Walk

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As most of you know, my family and I will be participating in the 2012 Jacksonville Walk for Autism Speaks. Well, this week, I was contacted by the folks organizing the walk. They wanted to recognize me, I guess, because I had raised a certain amount of money. Anyway, as I was talking with the coordinator, she invited me to write a short piece for their online newsletter. The theme was “Why I Walk,” and I was to keep it to 350 words or less—quite a challenge for a wordy person like myself! But I did it, and here it is, with a few links added in:

Hi, there. My name is Leo Zanchettin, and I’ve got plenty of reasons to walk for autism. Actually, I’ve got four main reasons: our kids who are on the autism spectrum. I’ve also got two other reasons: our kids who are not on the spectrum.

That’s right. My wife (Katie) and I have six kids, and four of them are on the autism spectrum. We like to say that we put the fun in high-functioning! We have so much fun that I’ve set an ambitious goal for this year’s walk—and a wacky incentive to go along with it. I’ve promised my donors that if I can raise $1,500.00 or more, I will dye a huge, blue puzzle piece in my hair for the walk. Yes, I will “go blue” for autism research!

So why do I walk? First, because I don’t want any family to go through the heartbreak we went through when our oldest child was diagnosed at 11 years of age—or the heartbreak that he went through for so long before he was diagnosed. I walk because I want every pediatrician to become expert in early detection. I want every child on the spectrum to benefit from early intervention—the way my older ones did not but my younger ones have.

Second, I walk because I dream of a world where educators recognize and welcome students on the spectrum. Too many times have we heard teachers telling us that there’s nothing wrong with one or another of our kids—at least nothing that a little extra discipline won’t solve. I walk to help raise awareness. I want kids on the spectrum to receive every opportunity to grow to their fullest potential.

Finally, I walk because I want every family touched by ASD to have access to scientifically validated, clinically effective treatments that really will help them. We are just beginning to understand the causes of ASD. We are just beginning to figure out what works and what doesn’t. I walk because I want trusted experts to protect families against hope-stealing, wallet-draining “miracle cures.”

So that’s why I walk. My kids are my heroes, and I want to give them everything I can.

Yep, that’s what I’m walking. And that’s what you are helping to accomplish with your donations. I’m very close to my goal, too. Just $120.00 more, and I’ll go blue. So here’s your chance to push me over the edge. Go ahead and make a pledge. Come on. You know you want to!

Sobering Stats and an Appeal

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It’s been a while, so I thought I’d update everyone on the fundraising for my walk for autism research next month. First, I want to thank those of you who have generously pledged to support me and my family on this walk. It’s really touching to see how many of you have decided to help us reach our goal. It can be very easy for Katie and me, as we dive into the day-to-day challenges of helping our kids navigate their special challenges, to lose sight of all the wonderful people around us. But donations like yours remind us that we’re not alone in this. So again, thank you for your help!

I also wanted to let you all know that there’s still time to pledge for our family at the walk, which takes place on September 29. We are more than halfway toward our goal, but we still have a ways to go. Even if you give just a little, you’ll be getting us that much closer to our goal—and that much closer to forcing me to dye a puzzle piece in my hair!

Of course, the blue hair is just a gimmick. It’s just a fun way to throw down the gauntlet. The real issue is funding to support research into autism spectrum disorders—and the need for this research is great.

Did you know that autism is one of the least funded of childhood disorders, even though it is the fastest-growing? As an example, muscular dystrophy research receives about $162 million a year in private funding, while autism research receives only $79 million a year. But autism touches approximately 1 in 88 people, while muscular dystrophy touches only 1 in 100,000 people.

Similarly, pediatric AIDS, which receives approximately $395 million a year in private funding, affects 1 in 300 people.

What’s more, despite its growing prevalence and the huge burden it places on society (about $137 billion a year), autism research receives only 0.6% of the NIH annual budget.

Mind you, I don’t begrudge the muscular dystrophy or pediatric AIDS people a dime of the money they need. I’d like to see them receive more. But these statistics show how far we have to go in helping researchers understand this complex, mysterious thing called autism.

So if you want to help—or if you just want to make me look a little silly—click on this link and make a pledge.

Thanks, everyone! I really do appreciate your friendship and your support.

Scarborough Responds

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Well, MSNBC has issued a statement from Joe Scarborough concerning his remarks yesterday linking the Aurora, Colorado, shooter to autism. Here’s what he said:

During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.

The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently.

I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.

Not the most convincing. And not really what the clip has him on record as having said. He does, however, concede a little bit of ground, admitting that “perhaps” he could have made his point more “eloquently.” Judging from the disconnect between the clip and his explanation of what he was trying to say, I don’t think eloquence is the problem. It’s more like he was lacking in clarity. I’m a fairly intelligent guy; I don’t think I’m so obtuse as to have missed his larger point. He just did a poor job of making it—if that is what he was trying to do.

Actually, if Scarborough had said what he claims to have meant, it would have been a pretty good thing. But I’m just having a hard time seeing it in that clip.

Others, in responding to the MSNBC/Scarborough statement, have latched on to words like “burden” and “epidemic,” but I don’t want to go there. Perhaps these are places where he could have been more eloquent or at least sensitive to families struggling with autism. But let’s face it. Autism is no picnic, and 1 in 88 sure sounds like an epidemic to me. Of course, I would never consider my children a burden, and the word “epidemic” makes ASD sound like the plague, but that’s a matter of semantics more than anything else.

I know that many organizations are still not satisfied, and some are continuing their call for a real apology. Me? I’m not holding my breath. Whatever damage has been done has already been done, and whatever reconciliation was going to occur has occurred. Instead of dwelling on this, I think I’ll just roll up my sleeves, get back to work, and keep enjoying my kids.

When Bloviators Bloviate

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And I was having such a good day. I had learned that Ernie Els won the British Open, which prompted me to look more closely into his links with the autism community and to be really encouraged and inspired by his generosity. Plus, my little girl came home from a long weekend with her grandfather and seemed to have a very good time—just a couple of ASD flare-ups needing to be addressed. Plus, I was making good progress on a set od articles at work. Yes, things were going well.

But then I just had to do it. I just had to check in with Facebook one more time. And what did I find? Links to a video clip from MSNBC commentator Joe Scarborough this morning. He was discussing Friday night’s shooting in an Aurora, Colorado, movie theater, trying to find sense in the horrendous events. Then in the course of the conversation, Scarborough offers these words of deep wisdom and insight:

As soon as I heard about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society. It happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses—they can even excel on college campuses—but are socially disconnected.

Then, as if to pour salt in the wound, Scarborough tells us that he has a son with Asperger syndrome. So I guess that means he’s qualified to make a long-distance provisional diagnosis of the shooter. And that he’s qualified to suggest that being on the autism spectrum makes you more likely to become a homicidal maniac.

What Was He Thinking?

Now it’s possible that Scarborough’s own journey with autism has been particularly challenging, and he is projecting his experience onto the whole autism community. I know of kids on the spectrum who seem to fit the kind of picture Scarborough painted—kids who stick to themselves, are socially awkward, and may be prone to violent melt downs.

But these people are far from the norm. And even those who tend to be more aggressive take out their aggression on themselves and their caregivers, not on perfect strangers. Not to mention that a melt down is pretty spontaneous. It’s not usually something four months in the making, involving elaborate booby traps and multiple purchases of ammunition on the Internet.

My real problem is that Scarborough stigmatized an entire population that is already suffering from a lot of misunderstanding and prejudice. As the father of a child on the autism spectrum, he should know better. As a professional journalist, he should know better. But he couldn’t resist the temptation to shoot off his mouth. By his unfettered logorrhea not only did he end up espousing an indefensible theory; he gave people another baseless reason to be afraid of people on the spectrum and to treat them as a separate class, “others” who are just weird enough to shoot up a whole movie theater.

No, They’re Not.

No, people on the autism spectrum are not more prone to violent crimes than the general population.

No, people on the autism spectrum are not sociopaths. There is no correlation between ASD and mass murder.

No, people on the autism spectrum are not retarded—even if some of them do suffer from mental retardation.

No, people on the autism spectrum are not automatons devoid of personal emotions and incapable of empathy—even if some struggle in expressing what is going on inside of them.

No, people on the autism spectrum are not just spoiled brats who need more parental discipline.

Send a Message.

So if this makes you uncomfortable in any way, follow this link. It will take you to an online petition asking that Scarborough retract his speculation and offer an apology to the autism community. He really does need to set the record straight, if only for the sake of his son.