Lots of Snowflakes

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My next stop was the enchanting kingdom of Arendelle, where I visited Queen Elsa. Like the other people I spoke with, she was very happy to record a message to kids on the autism spectrum. She got it right away when I explained why I was asking her to do this. You see, Elsa has special, unique abilities that most people didn’t understand, and this made her feel like an outcast. She was even denounced as a “monster” by the Duke of Weselton. She hid away for years, staying in the shadows, because she was afraid of her powers, which she couldn’t control. She also stayed in hiding because of how guilty she felt for having accidentally hurt her sister, Anna.

As you can see, Elsa was living under a dark cloud of oppression—much of it undeserved. I told her that many kids on the autism spectrum can feel that way as well. They can stand out from the crowd. They can feel as if they are too different from the people around them. Even worse, those things that make them different can overwhelm them and make them say or do hurtful things. Like Elsa, they can be bound up in guilt and fear. Some even build a colorful, imaginative world of their own, a refuge from the world where they are free to be themselves. But like Elsa’s ice castle, this refuge can turn into a prison as they remain isolated from the people who love them.

Elsa thought that her castle would protect her. She thought that it would be the one place where she express everything unique and awesome about herself. But then the outside world came crashing in. She became a prisoner of people who didn’t understand, people who didn’t love, and that made her more miserable than before.

It took an act of true love to finally set Elsa free—her sister Anna’s complete acceptance of her and her willingness to sacrifice her own life to protect her. That was the key. Knowing how much she was loved helped her lose all the negative thoughts she had had about herself—all the fear and guilt and isolation that was swirling around inside of her.

The best part about Elsa’s story is that her freedom didn’t mean that she became “normal” like everyone else. She was still the same shy young woman with a unique talent. But because she was surrounded by love, she learned how to harness that talent and use it for good. She let go of the bad stuff and embraced the good. And because of that, she was no longer subject to her powers; now they were subject to her. In the end, Elsa was free to be the one-of-a-kind person she always was. And that’s what she wanted to share with everyone.

Words for the Warriors

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Sorry about the low resolution. The sun was setting.

After visiting Aladdin and Jasmine in Agrabah, I hopped over to China to spend some time with Mulan. Because of the time difference, it was evening already. When I asked her if she would record a video message for kids on the autism spectrum, she told me she was delighted to do it. “But why me?” she asked. So I explained.

After spending years preparing for, and dreading, the role that everyone expected of her—that of a demur, domestic housewife—Mulan felt like a failure. “Why is my reflection someone I don’t know?” she wondered. It frustrated her to feel that she couldn’t live up to people’s expectations. Looking at the world around her, she wasn’t sure where she fit in or if she would fit in at all. She wanted to be herself, but she was afraid how people would react. She was afraid, too, that she would have no future unless she became someone she wasn’t.

But then war came, and Mulan’s aged father was ashamed that he couldn’t help defend his homeland. Mulan saw her opportunity and, like Joan of Arc, she disguised herself as a soldier and took his place. After an awkward start, Mulan blossomed into a confident, self-possessed woman and led an army into battle against the Huns. Finally free to be the person she always had been, Mulan saved her kingdom and restored honor to her family’s name. Not bad at all!

I explained this to Mulan and told her how similar her story is to many people on the autism spectrum. Like her, many of them are frustrated or feel inferior because they don’t fit most people’s expectations. They may not talk. They may not be interested in sports. They may prefer to spend time cataloguing their bug collection instead of going to a birthday party. People might call them “awkward” or “quirky” or far worse. Feeling like they don’t fit in, they may be tempted to give up on their dreams. I told her they needed to think of themselves as warriors willing to fight negative stereotypes. They needed to become strong so that they could make a difference in the world. And they needed the inner strength to look at their reflection and see just how awesome they really are.

Hearing all of this, Mulan was more than happy to record the video. In fact, she was downright eager to tell talk about how it’s okay to be different—as long as you’re true to yourself. She told them . . . well, see for yourself.

Hey, Look! We’re on the Internet!

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No, seriously. Christopher Ulmer, a young special-ed teacher from Florida, came and interviewed us for a project he’s working on called Special Books by Special Kids. He’s been traveling the East Coast recording  his encounters with special-needs families along the way.

Here’s a link to the video. Just about all of the kids show up—all except our youngest, who was too wrapped up in video games to be bothered with an interview. Enjoy!

The Best Christmas Present Ever

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Some random thoughts as I watch my son perform in the Frederick Children’s Chorus Christmas concert.

  • I never thought I’d see this day. This is the kid who didn’t talk until he was four years old, and here he is on stage, singing! This is the kid who couldn’t sit still to save his life, and here he is patiently and carefully following the director’s every move. This is the kid who could zone out at any point and lose track of his surroundings, and here he is completely and totally engaged in the concert.
  • Look at him up there singing so enthusiastically! That autistic black-and-white thinking has enabled him to focus so completely on getting everything right, just as he has practiced it for the past four months. He is doing everything exactly as he has been taught. Every movement executed with great precision. Every word enunciated clearly and crisply. That smile radiating so innocently.
  • Seeing him so dedicated to the performance here helps me understand what he meant when he complained about chorus practice a few weeks ago. He didn’t enjoy it, he told me, “because it was too much fun.”
    — “What? I can understand not fun enough, but how can you have too much fun?”
    — “Oh, you know, all the other kids were goofing off too much, and I wanted to get down to work. They were having too much fun when I was serious about learning the music.”
  • See that picture up there? That’s the same kid at his school’s winter concert. Yes, he is in two choruses—the school chorus and the much more competitive citywide chorus. At the school’s concert, not only did he sing in the chorus, he had a solo. My son. On stage. By himself. With a microphone.
  • I used to wonder what the future looked like for him. Would he be able to live on his own? Would he find a job? Friends? Love? Now I’m dreaming about how far he’ll go in life. It seems like the sky’s the limit for this kid.
  • His other passion, in addition to music, is cooking. He often helps Katie around the kitchen. Just the other night he and I baked Christmas cookies together. He was so confident and competent, so invested in what we were doing, so willing to learn and experiment. I don’t doubt for a minute that his dream job—owning his own restaurant—is within reach. It’s not just a pipe dream that I humor; it’s a real goal that I absolutely can see him accomplishing.
  • I see what you can do, son. When I remember what you were like a few years ago and see what you are accomplishing right now, I am convinced that your future is very bright. It’s so bright that my eyes are beginning to sting. Hang on a second while I wipe them with this tissue.
  • This is the best Christmas present I could ever receive.

“We Are Not Diseased”

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I’ve been feeling pretty good lately, and I’ll tell you why. My oldest daughter (14) did something that impressed me no end. Her Health class has been studying mental illness for the past couple of weeks. You know, the usual teenage awareness stuff: depression, anxiety, anorexia, suicide. It was all going pretty well, too. No negative blowback from my girl, even though she’s keenly aware of her own diagnoses.

But then the class turned to ADHD, and this happened. Introducing the lesson, her teacher said something like, “Now let’s look at another disease, ADHD.” This prompted my daughter (who has ADHD along with autism) to raise her hand. “Excuse me,” she said, “but ADHD is not a disease. I have ADHD, and I’m just fine.” The teacher, caught off guard, apologized for having misspoken, and then moved on with the lesson. Pretty impressive, wouldn’t you say? She definitely deserved an attagirl for advocating like that.

However, when she told us the story that night, I could tell she was more upset than she let on at school. Because she tries hard to be good in class, she kept her response there short and polite. But she let it all out at dinner. “We’re not diseased,” she declared, pounding the table with her fist. “We’re different, not less. Why do people do this to us? I can’t believe he said this. And he’s a Health teacher. He should know better!”

I couldn’t agree with her more, and I told her so. I also told her how proud of her I was. It was wonderful to see that my daughter has her head screwed on straight and doesn’t tolerate nonsense. She gets that ADHD—and autism, for that matter—is nothing to be ashamed of. She gets that she’s not diseased or locked in to a life of limitations. She has hopes and dreams and ambitions, and she’s determined to accomplish them—no matter how much BS she has to deal with along the way.

A Quick Pivot.

All of this got me thinking about recent events, especially the mass shooting at Umpqua Community College in Oregon. News of that attack seemed to be a kind of tipping point in the gun control debate. With President Obama taking to the podium yet again, this time sounding exasperated and even disgusted, people are talking about gun violence more seriously. And that’s a good thing.

But all this attention has its down side. For every time another mass shooting occurs, talking heads on TV and the radio pivot almost instinctively to the topic of mental illness. They decry the sorry state of mental health care in the country, and suggest that if we only did better at this, massacres like these wouldn’t happen. And when I hear stuff like this, I cringe. 

Stigmatizing the “Other.”

Of course, I’m all for improved mental health care, but there is no real science linking mental illness to mass shootings—or to shootings in general. In fact, those with mental illness are far more likely to be the victims of such catastrophes than the perpetrators. As The New York Times recently reported, “Fewer than 5 percent of gun crimes are committed by people with mental illness; fewer than 5 percent of people with mental illnesses commit violent crimes.” And so I cringe every time mental illness enters the conversation. I can already feel the damage that it will do to people with mental illness.

  • I see the way it stigmatizes them.
  • I see how it turns them into a class of “others” who are alien to “normal” people and inferior to them.
  • I see how, intentionally or not, this kind of talk stirs up fear, which makes it harder for the people to find the acceptance and help they need.
  • I see how it presents them as weak and out of control, when quite often they’re stronger than their peers—with the strength that comes from adversity.

Something else troubles me about this conversation, though. Whenever mental illness is brought up in the context of a mass shooting, autism follows fast on its heels.

Mental What?

I commented on this back in 2012, when MSNBC host and former Florida congressman Joe Scarborough insinuated that James Holmes, the Aurora, Colorado, theater shooter, had autism, and that this was a major reason for his attack. Scarborough’s comments prompted a huge outcry, and he later issued a semi-apology. But it was too late; the damage had already been done.

But now it has happened again. Not long after the Oregon shooting, a Facebook page popped up called “Families against Autistic Shooters.” It was vicious and hateful—and more than a little ill-informed. Fortunately, the page didn’t last very long. But the fact that it showed up at all demonstrates that we still have a lot of work to do.

The speed with which people glide from mental illness to autism is as confusing as it is disheartening. ASD is not a mental illness. It just isn’t. It is a neurological difference (disorder if you must) in which the autistic person’s brain is wired differently from the typical person’s brain. But it’s not an illness. You can’t control it with medication, as you can control OCD or anxiety. You can’t shock it away with electrodes as you can do to severe depression. You can’t “overcome” it through talk therapy or yoga or meditation. You can’t even pray it away. It just is, and the best thing you can do is make room for it.

Words Matter.

I’m not saying that everything is rainbows and unicorns for autistic people—especially those with more severe manifestations of the condition. But let’s not call it an illness or a disease. That’s where the word cloud at the top of this post comes in. It’s a list of famous, successful people, all of whom are autistic. Ask any one of them, and I doubt any one of them would call themselves mentally ill. And they shouldn’t.

Words matter. They tell you what something is—and what it isn’t. If you call a cat a fish, and try to put it in a tank full of water, you’ll be doing an injustice to the cat. (You’ll also end up a bloody, scratched-up mess.) If you call autism a disease and treat it like a disease, you are doing something very similar—an injustice to autistic people. For calling it a disease naturally opens the door to discussions about cures. And that can get pretty dangerous. Just ask the people who have been subjected to bleach enemas and chemical castration in the name of a “cure” for autism.

If you accept that autism is a difference and not a disease, you’ll treat it differently. Instead of spending your time and money looking for a cure, you’ll try to help autistic people navigate a neurotypical world. You’ll dedicate yourself to educating the public about the gifts and talents that autistic people have to offer, as well as the challenges they face. You’ll make it easier for others to accept autistic people for who they are, and you’ll work to eradicate stigmas and bogus information related to it. And that’s how you make autistic people’s lives better.

Lighten Up.

So lighten up on the autism stuff. People with autism already have enough to deal with. Don’t make them scapegoats as well—unless, of course, you want to deal with my daughter.