Monthly Archives: July 2012

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.

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.

Am I Out of Your Mind?

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We were at Mass a couple of weeks ago when my six-year-old had one of his more dramatic melt downs. In a previous post, I dissected a melt down that my oldest daughter had at a local sub shop. There, I talked about how sensitive ASD folks can be to ordinary visual and auditory “noise.” It can cause such an assault on their senses that they lose control.

Well, church is another place where this can happen. You are surrounded by a ton of people intoning unfamiliar words. Choirs, often mediocre in quality, sing with great gusto in the belief that high volume equals deep sincerity. Women are more intensely perfumed than when they go to the grocery store . You also have statues, stained glass windows, and spot lights to contend with—not to mention the occasional use of incense. When you look at it from an ASD point of view, church can be a disaster waiting to happen.

From Pillar to Post.

I’ve been working with my boy the past few months, taking him to the more subdued Saturday vigil Mass—and only with his next-older brother, who has recently mastered the art of respectful silence. He was doing so well that I thought it was time for the whole family to try to go to the better attended, more formal Sunday morning Mass. Katie took three kids to one side of the church, and I took the other three to the opposite side. (Baby steps. We’re not ready to be all together yet.)

It wasn’t long before I discovered that we’ve still got some work to do. The kid could barely keep himself together. He kept trying to play raucously with his younger brother, and whenever I separated them, he would break into prolonged sobs and full-voiced promises to do better. After a bit of this, and seeing that I would not grant him access to his brother, he began climbing over me to get to the little guy—which prompted more hushed remonstrations by me, which prompted louder protestations from him. And on it went through the readings and homily.

By the time we got to the Creed, my half of the family was heading for the nearest exit—with the boy bewailing his fate the whole way. His older brother found the other half, and I sat outside the church with the other two, listening to the rest of the liturgy through the outdoor speakers. At least I knew when it was time to go back in for communion.

Mind Blindness.

Now much of this could be attributed to normal six-year-old rambunctiousness. But the most telling ASD sign was his lack of regard for the people around him. He had no concept that his antics or his complaints were disturbing anyone. He was unaware of the nonverbal cues given by the folks in the pew in front of us—cues that included one gentleman turning around and looking right at him with a bemused scowl on his face. Even when I pointed out to my boy that he was keeping other people from praying, it didn’t register. It was only when we got home, away from all the noise and distractions, that I was able to help him see where he had gone off the rails. And I know that this won’t be the only time he loses it. We’ve got a way to go—slow and steady—until he learns how to read a situation and act appropriately in it.

So how is this related to ASD? Because folks on the spectrum tend to have a deficit in what is known as “theory of mind.” It’s also called “mind blindness.” That’s psych-speak for the ability to recognize other people’s perspectives, beliefs, needs, and desires. People with ASD need extra help in understanding that other individuals have their own personality, think their own thoughts, and have their own preferences. What’s more, they don’t get that they themselves have a limited, subjective perspective. To a greater or lesser degree, the sum total of reality is limited to what they perceive or what they are aware of. This is especially the case when they are under stress or in a new, frightening environment. As their neurotypical peers would do in similar situations, they collapse in on themselves—only more dramatically. That’s where the term autism comes from: auto is the Greek root for “self.”

This mind blindness regularly gets a good portrayal in the television show Parenthood. One of the characters is a boy named Max, who has Asperger syndrome. In this clip, Max has a hard time navigating an ordinary history lesson. He doesn’t get that he has to show some deference to the girl in the desk next to him, and he isn’t clear on the respect due to his teacher. But as the clip shows, Max is not really being disrespectful. He’s being “a-respectful.” And that can be very maddening for the uninitiated.

The “Data Myth.”

Now all this makes a lot of sense, and it’s very helpful as I work with my kids. Very often, they’re not being bad, they’re just being aspie. And that gives me something to work with.

But a word of caution is needed here as well.

There are those who would equate mind blindness with a lack of empathy. Because ASD folks have a hard time reading other people’s faces, vocal tones, or body language, they must be incapable of making contact with them or having meaningful relationships. They’re like the android Data on Star Trek: The Next Generation. But mind blindness is not the same thing as lack of empathy. In fact, folks on the spectrum can be very loving and kind. They just don’t know how to show it. Or they show it in inappropriate ways. And that can lead to a kind of isolation in which the ASD person has few friends, if any. He wants to reach out, but he doesn’t know how. And he can have a hard time seeing when someone else is making a friendly overture to him, or he misinterprets it as something else. Then the social faux-pas happens, and he ends up alone again.

We’ve been through this with our older kids, and it can be heartbreaking. We try to help them understand what a potential friend was trying to say or do—but it’s usually wisdom given after the fact. And then it doesn’t help all that much, because ASD folks also have a hard time generalizing from a specific situation to a number of similar ones. It’s a horrible Catch-22 for them, but that’s where they are.

So we keep working with them. We especially keep working to make sure they know that they are loved and welcomed and accepted as the wonderful people they are. In this way, we are blessed to have a large family. Our kids have no choice but to figure out how to relate to other people. It’s the only way we’ll get anything done as a family! They’re getting some vital socialization right under their own roof, and we know that’s going to help them once they enter the world and try to make a way for themselves. In the mean time, they’ve got us. And they’ve got each other. And that’s just fine for now.