Tag Archives: autism

A Whole Blue World

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As many of you know, I reached my fundraising goal of $1,500.00 late last month. What a great feeling, both being able to raise so much and seeing the support that so many friends have given us. Every donation has been a moving testimony to Katie and me that we’re not alone in this journey.

But as inspiring as it has been to come this far, I believe we can go farther. I know there are still people out there who need just a little more encouragement—or a couple more reminders. There are still aunts and uncles, cousins and godparents, co-workers and neighbors, friends and even frenemies out there, just waiting for another invitation.

So here’s the new incentive. If I can get to the $2,000.00 level before the walk, I’ll dye my whole head blue. Yup—the entire cranium. All it takes is $500.00. That’s just $50.00 from 10 people. Or $100.00 from 5 people. Or $25.00 from 20 people. That’s not too hard to imagine, is it?

And if you do give, here’s how your donation will be put to work.

First, there’s Autism Speaks’ research program, which makes grants to pediatricians, geneticists, psychologists, neurologists, and other professionals delving into the causes and treatments of autism spectrum disorders. The program also includes the Autism Genetic Research Exchange (AGRE), which is building a comprehensive research database comprised of DNA, clinical, and medical information from families with two or more children on the autism spectrum. Needless to say, our family is a mother lode of information for them! We’ve been part of the AGRE project for the past three years, and it feels great knowing that we’re able to help.

There are also a number of online tool kits developed by Autism Speaks. The most popular is their 100 Day Kit, which was created for parents of newly-diagnosed children. Those first few months are often filled with anxiety and loads of questions, and this online tool offers expert guidance to help parents acclimate themselves to their new reality. Other tool kits give parents information concerning medication options, various behavioral treatments, and navigating challenging events like dental visits and potty training.

Next, there’s Autism Votes, the lobbying arm of Autism Speaks. The purpose of this group is to advocate for laws that will protect people on the spectrum. Some states still don’t require insurance companies to cover behavior therapy or speech and occupational therapies to people with an ASD diagnosis. Autism Votes is in these states, working to convince lawmakers that the upfront cost of these requirements is far less than the long-term costs of caring for people who never learned the skills they needed to help them function in the outside world. Autism Votes was also instrumental in getting the Combating Autism Reauthorization Act (CARA) through the House and Senate. This act secured nearly $700 million in federal dollars over three years for autism research, treatment, and services. It’s still not where it should be, but at least there’s movement.

See how much good you’ll be doing if you make a pledge? It’s not about making me dye my hair blue; it’s about helping to improve the lives of families touched by ASD. It’s about figuring out what causes this thing in the first place. It’s about making the world a more welcoming place for folks on the spectrum. So if you haven’t made a donation yet, go ahead. Push me over the $2,000.00 mark. You can help make a difference in so many lives. And if you’ve already donated, thank you so much. You’ve already made a huge difference!

We Did It!

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Cue the fireworks and strike up the band! As of this Wednesday, I reached my goal for the 2012 Jacksonville Walk for Autism Speaks. Or perhaps I should say that we reached our goal for the walk. Each and every one of you who donated helped get me closer to the $1500.00 mark—and closer to blue hair. Thank you all so very much!

I can’t tell you how moving it was each time I received notification that another one of you made a donation on our family’s behalf. When I began this thing back in March, I imagined I would see the numbers rack up over time with a dispassionate acknowledgement of my friends’ generosity.

Sure, I’d be grateful and all that. But I wasn’t expecting to be as affected as I turned out being. Each time another name was added to the list, I would think of that person and all that he or she has meant to me or Katie over the years. It would feel as if that person were right there with me, assuring me that we weren’t alone in this. And that has made a very big difference. Now, when I walk on September 29, I’ll be taking each of these people with me in my heart, thanking them for their concern and praying that God will shower them with his blessings.

A Few Moving Surprises.

Something else that surprised me was the great variety of people who donated. One pledge came in from a priest in Noblesville, Indiana whom I haven’t seen in decades. We knew each other when I was in College at Mount St. Mary’s and he was a seminarian there, but haven’t seen each other since our days at the Mount in the late 1970s and early 1980s. Another came from a co-worker at The Word Among Us whom I have met only once or twice, but who has never met Katie or my kids. Still, she wanted to help. And a third came from a cousin up in Pennsylvania whom I don’t think I’ve seen since I was in my twenties.

Of course, the people you would expect to give showed up—the family members and close friends who see you regularly. But to hear from people like those I mentioned above—that’s just amazing.

So now I’m off to get some blue dye and a puzzle-piece template. But I’m not done yet. There are still four weeks to go until the walk. There’s still time to give, if you’ve been putting it off. Don’t let the fact that I’ve reached my goal stop you. In fact, I’m thinking (not sure yet) of upping the ante and promising to dye my whole head blue if I get to $2,000.00. Now wouldn’t that be a hoot?

One Small Step.

It’s a great feeling to know I’ve reached my goal. But that’s just small potatoes. The medical and scientific community is still a long way off from reaching its goal. We still know so little about the causes of autism spectrum disorders. We still know so little about how to help those afflicted with ASD. And we surely have a verrrrry long way to go in raising awareness about this little-known but rapidly-growing disorder.

Too many kids are being bullied and written off in schools all around the country. Too many adults are unemployed or underemployed because people can’t see all they have to offer. Too many pediatricians don’t know ASD when it’s staring them right in the face. Too many parents are told there’s no hope . . . when there is tons of it.

So I reached my goal. So I’m going to walk. But that’s just one small step. The whole ASD community has a very long road to walk. I am so grateful to each of you who have made this one step possible. Still, I can’t help but keep appealing to everyone else to help us get a little bit farther. Just click on this link, and help us out. Thanks to all of you!

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!

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.