Category Archives: In the News

Congrats, Ernie!

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While the golfing world is filled with news of Ernie Els winning the British Open this weekend, I thought I’d repost a video he produced for Autism Speaks. In 2005, Els’ son, Ben, was diagnosed as being on the autism spectrum, and after he and his wife went through the shock and grief of the diagnosis–which he himself speaks of–he realized he was in a unique position to help. And so began the plans for the Els Center of Excellence in South Florida. “Autism hits families hard,” Els wrote, “and I’ll be fighting for the rest of my life to try and help others in the same situation.”

I find it comforting to know that people like Ernie Els are giving so much to the cause of autism research and therapy. Of course, he’s got skin in the game! But he doesn’t have to go to such lengths to found a $30-million state-of-the-art facility. He could just as easily write a huge check to Autism Speaks every year, and get on with his golf. And neither is he trying to use this project as a way to burnish his image or market himself, as others have done. He’s just trying to make a difference for people like Ben.

So join me in congratulating Ernie Els on winning the British Open–something he wasn’t expected to do. But let’s congratulate him also for his generosity and dedication to something bigger than his life, his career, and his image. And if you have a mind to help out, remember that my family is going to be walking for autism research in September. We’d really appreciate any donations you could make to help us hit our goal. We can’t give $6 million, like Ernie and Liezl Els did, but we can do something that still makes a difference!

Sad News for Researchers

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Sorry it’s taken me so long to get around to this. It seems that about a month ago, a freezer at the Harvard Brain Tissue Research Center failed, resulting in the thawing of close to 150 brains that had been donated for research. Of those affected, more than 50 were dedicated to autism research. The Boston Globe has up the story, which you can read right here.

This is a significant setback for autism research, as the brains in this freezer made up a full one-third of the total brains in Autism Speaks’ Autism Tissue Program. Scientists estimate that it could take up to ten years to obtain that many brains from generous organ donors.

Harry Kimball, at Brainstorm, a blog hosted by the Child Mind Institute, found a silver lining in this tragic event:

“Now, this loss may turn out to be a real blow to the current state of autism research—but it also illustrates just how far we have come. Foul play or malfunctioning freezer units aside, this incident gives us insight into a coordinated research effort that teams a leading advocacy organization with a top-tier research university and federal funding. We see families affected by autism and other psychiatric and neurological disorders eager to turn their own personal tragedies into opportunities for others. It is sad that something went terribly wrong, but at least it happened in the context of things being done so right.”

I found another silver lining. This loss highlights the need to support autism research. Programs like the Autism Tissue Program, AGRE, and the Interactive Autism Network rely largely on private donations. NIH gives some money, but it doesn’t come close to covering the ambitious projects that these organizations are undertaking. I know I’ve got the Make Me Go Blue challenge on this blog, and it’s got a fun side to it. I’d get a real kick out of dyeing my hair blue, and I’m sure a lot of folks would get a good laugh out of the pictures. But this is serious stuff. Autism diagnoses are ballooning, and scientists are only chipping around the edges of what’s causing the epidemic. So please consider making a donation. It’s a long road toward understanding this vexing, pervasive disorder. But every step along the way gets us that much closer. Thanks.

Pornography for Autism?

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I don’t know what to think of this news item. It seems that Jenny McCarthy, she of the autism-can-be-cured camp, is going to pose nude for the July-August edition of Playboy magazine and donate the proceeds of her photo session to autism. Stuart Duncan, over at Autism from a Father’s Point of View, reports that the money will go to McCarthy’s charity, Generation Rescue—a cool $2 million.

Now, some may furrow a brow at the fact that the money is going directly into McCarthy’s own charity. But that doesn’t bother me too much. That is, assuming that the charity is overseen by an independent board of trustees. Which it seems to be. (Get this, though. One of the board members is Don Imus’ wife. What a hoot!)

Others may furrow a brow at the fact that the money is going toward an organization that promotes the long-debunked theory that vaccines, particularly the ones containing thimerisol, are the cause of autism. McCarthy has hitched her wagon to the star of one Dr. Jerry Kartzinel, whose biomedical theories have not gained much traction within the medical or scientific community. He’s no Andrew Wakefield—the father of the vaccine conspiracy theory—but he’s pretty close. But again, I don’t mind that too much either. Mind you, I am leery of those who claim they can cure autism, but hey, knock yourself out trying!

No, my brow is furrowed because of the way this money is being raised. As parents of kids on the autism spectrum, the last thing we want is for our kids to be treated as objects. It’s why we avoid saying that our children are “autistics,” much the way people who can’t walk hate being called “cripples.” Terms like that reduce them to and define them by their disabilities, when there’s so much more to them than that. But here is Ms. McCarthy reducing herself into an object, a thing to be looked at and masturbated to. (Let’s be honest here. Who buys Playboy just to read the articles?)

There’s something really odd here. In the name of upholding and enhancing the dignity of kids on the spectrum, McCarthy is degrading herself. In the name of one kind of healing, she is feeding other sicknesses. She may be raising awareness, but she is choosing a pretty prurient way to do it—in a sense, prostituting herself “for the cause.” And that’s unfortunate.

Practically Perfect in Every Way

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Here’s a story about an autism-friendly staging of Broadway’s Mary Poppins. Anyone who knows me knows that I’m a huge fan of all things Disney (with the possible exception of their ‘tween stuff. Miley Cyrus? Really?). So it came as no surprise that the Disney company would cooperate so fully with the folks at the Theatre Development Fund. When they learned that TDF had bought out the house for the Sunday matinee, they were more than happy to make adaptations to the show so that audience members with autism would have as positive an experience as possible: No strobe lights? Check. Quiet down the sound of the tap-dancing? You got it. Give ample warning before loud noises or big surprises? No problem. The entire cast and crew added extra hours of rehearsal so they could get this one showing just right. I can’t tell you how good this makes me feel, even though we live 965 miles from the New Amsterdam Theatre.

Reading this piece reminded me of the “fun” we had when our oldest was a baby. The pastor of our church would often tell a joke or have a dry, witty remark at the opening of Mass–something to engage the congregation and loosen them up a bit. The problem was, our son was very sensitive to sudden noises, especially outbursts of laughter or applause. (He still is.) So every time the congregation would laugh or clap, he would let out a blood-curdling scream and  begin to cry as if in pain. Katie or I would have to take him out into the lobby until he calmed down. Then we’d bring him back in, just in time for the homily–which often involved audience participation. And then there were the announcements at the end, with the occasional shout-out to some super-involved parishioner or committee–followed by applause. So if all three events happened at the same Mass, our son ended up spending most of the time in the lobby, with Katie and me alternating as his chaperone.

All that was back when we had no clue that he was on the autism spectrum. Heck, we didn’t even know there was a spectrum! We thought he was just sensitive. (He was.) We thought he was just high strung. (He was.) We thought he’d grow out of it eventually. (He hasn’t–at least not completely.) We never thought it was because his brain was wired differently. We never saw it as a warning sign of other challenges and developmental delays down the road. It took many more years before we put the pieces together.

But now we know. Now we get why he reacted that way at Mass. We also get why it took him five days of a six-day beach vacation to muster the courage to crawl off the beach towel and onto the gritty sand. We get why he spent a whole spring and summer afraid to walk on the pointy grass blades of our front lawn. We get why the geckoes that loved to dash around our front porch in St. Augustine filled him with terror and kept him from going outside unless one of us carried him. All these sensory assaults were just too much.

So now we know. And that knowledge, while unsettling in some ways, is comforting in other ways. We have a label. We have an explanation. And that means we can learn how to help him. It means, also, that he doesn’t have to go through life afraid of all the things that used to startle him so deeply. Because he can name his challenges, he has a greater degree of control over them. He can learn how to adapt.

Now twelve years old, our son knows who he is, and that knowledge has a good side and a not-so-good side. On the not-so-good side, he is having to deal with a sense of otherness about himself. He knows that he’s got more challenges than most of his peers, and it can get him down. This is not uncommon for folks on the spectrum–the incidence of depression is much higher among them than in the general population.

But on the good side, he has developed a real compassion for other kids on the spectrum, especially those who are more profoundly affected than he is. He actively seeks them out at school and tries to befriend them. He is even looking into the possibility of volunteering as an after-school aid to work with these kids. He can also be very tender-hearted toward his brothers, who are more autistic than he is.

I’m proud of the way my boy has accepted his diagnosis. We’ve still got some work to do in the self-worth department, and there are still social and academic challenges he must overcome. But I love the way he’s looking outside of himself and trying to help other kids. Who knows? He may end up as a counselor or mentor. He may end up  bringing masterpieces like Mary Poppins to kids who aren’t fortunate enough to live in New York City. He may even end up developing entirely new autism-friendly experiences for the next generation–something that’s practically perfect in every way.

A Gleam of Hope in Education

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Great news! According to an article in the Washington Post this weekend, Representative Jim Moran (D-Va.) introduced a bill in Congress that would establish a program to train teachers who work with children on the autism spectrum.

It makes sense, given the rise in prevalence, that general education teachers learn about the ins and outs of ASD and the various ways it can affect a student’s learning.

What I like about the bill is that not only is training required but it looks like parents themselves will have some say in the programs that are developed on the local level. It won’t be just education experts.

Now the challenge will be making sure that kids on the spectrum are identified as such. You see, the bill states that the programs are intended for school districts where at least ten percent of the special-education population are children identified as having an autism spectrum disorder. But we have seen how reluctant schools are to make this designation. Even when we bring in diagnoses from private psychologists—diagnoses confirmed by a psychiatrist and a treating pediatrician with experience in ASD—the district demands that it perform its own evaluation by a school psychologist. And the school psychologist always seems to approach evaluations from a highly skeptical perspective.

Still, this bill is a good step forward. We have had enough teachers who have refused to consider ASD as part of the reason for one or another of our children’s academic challenges. Instead, they have chosen either to browbeat our kids for their lack of focus or to dismiss them as having below average intelligence—despite reports to the contrary from private evaluations. If these teachers simply understood the ins and outs of this disorder, they would adjust not only their attitudes but their teaching methods as well.

You can be sure I’m going to be following this bill as it makes its way through Congress. I also intend to let our own representative know about it and encourage his endorsement. Now, if only I knew what percentage of Saint Johns County special-ed kids are identified as ASD. I guess that’s my next step. Wish me luck!