Words from the Unwise

Lawsuit-Officer-handcuffed-elementary-school-students-with-ADHD

So this bit of news has been making the rounds the past couple of days among autism and other special-needs parents. It seems that in two unrelated incidents, a police resource officer in a Kentucky grade school put an eight-year-old boy and a nine-year-old girl in handcuffs in order to restrain them—cuffing them around their biceps because their small hands would slip through the cuffs. Both students have ADHD, and the girl also had a history of some kind of trauma.

The school was aware of the children’s diagnoses, as was the police officer who cuffed them. Both students had been removed from their classrooms because of disruptive behavior, and when the principal was unable to contain the situations, the officer took over, employing the handcuffs. (Note: watch the video at the top of the article at your own risk. It’s very disturbing.)

According to the report, the girl was especially upset by the situation, to the point of needing psychiatric treatment in a hospital. Understandably, both sets of parents are suing the officer involved.

This is a very sad story, especially in a time when attention has already been focused on police officers abusing their power and mistreating people who live on the margins. These incidents may not rise to the level of Freddie Gray or Michael Brown, but they come pretty darned close.

I don’t want to say much about the incidents—I don’t like stating the obvious or dwelling on people’s stupidity. But I do want to look at the article that described the situation. Actually, not the article (although it does have a couple of really embarrassing typos), but the utterly irresponsible headline that was assigned to it:

Lawsuit: Officer handcuffed mentally disabled kids as punishment.

Disabled? Mentally? What does that even mean? The report only talks about ADHD and some unspecified trauma. It’s not as if the kids had been lobotomized or anything. There’s nothing in the report that indicated the students were “disabled” in the sense that most people understand that term.

It doesn’t take a genius to see how this terminology places a kind of perception filter over the whole story.

“Oh, the kids must have been truly and deeply disturbed.”

“I can understand why the principal let the officer shackle the children.”

“These are mentally disabled kids—it’s not as if they were ‘normal’ kids. I guess it’s okay.”

It may not seem like a huge deal—just a matter of poor wording. But in this time when the Americans with Disabilities Act is celebrating its twenty-fifth anniversary, we don’t need to be going backwards. Remember, it was the ADA that ushered in the era of person-centered language. So we talk about a man with schizophrenia rather than calling him a schizophrenic. We talk about a woman who can’t walk instead of calling her a cripple. And we talk about a child with ADHD rather than calling him mentally disabled. Or at the very worst, we call him a child with a disability.

It shouldn’t be rocket science at this point in our history, and yet here we are. We’re still using hurtful, discriminatory words. Words that justify abuse, fear, and marginalization.

ADHD Hall of Fame.

But that’s not all. Terms like “mentally disabled” give the impression that the kids are slow learners or are academic underachievers. It puts them in a category of “less than,” when there is absolutely no evidence in the article that this is the case. For all we know, these kids could be total freaking geniuses who happen to have ADHD. It’s not uncommon, after all for this combination to occur.

Here, for instance, is a list of some well-known, very successful people who also have ADHD:

  • Virgin Airlines CEO Richard Branson
  • Quarterback Terry Bradshaw
  • Musician Justin Timberlake
  • Pulitzer Prize Winning Journalist Katherine Ellison
  • Comedian Whoopi Goldberg
  • Actress Michelle Rodriguez

Would you call any of them “mentally disabled”?

Words from the Unwise.

It’s possible that the editor who created this headline thought the article would get more views if he or she used a provocative title. Or maybe the editor was trying to allude to the recent police brutality stories. But it was a very poor choice of words. It’s deeply offensive, and it did a huge disservice, both to the story and more important, to the kids.

But hey, I guess we’re making some progress. At least the headline didn’t call the kids retarded.

A Wibbly-Wobbly Ball of . . . Stuff

Wibbly-Wobbly Ball

Before we start, take a look at this very short clip from Doctor Who, in which The Doctor explains the true nature of time. Trust me, it does relate.

That was pretty good, wasn’t it? Now for the explanation.

In a recent blog post, ASD guru and Aspergers role model John Elder Robison tackled the use of terms high-functioning and low-functioning when it comes to describing people with autism. Here’s what he said:

Much has been written about calling people high functioning or low functioning. With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading. . . . Suggesting that “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.” People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago. I didn’t like it then and I don’t like it now.

Robison then goes on to talk about how dividing people up based on their “functioning” status misses the point of how autism works:

We now know that our functional level changes with time and other factors. As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70. It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

As I said in my last post, my kids are showing me that autism can shift and swirl over time. Not for nothing is it called a developmental difference. It’s a matter of how and when a person develops social, cognitive, and communication skills. Some people develop more slowly or more unevenly than others. Some have persistent, nagging glitches in their development that affect them throughout their lives, while others overcome some challenges as they mature—only to find new challenges crop up. For many, it’s a mixture of both permanent and emerging attributes. So it’s awfully simplistic to reduce such a complex thing as autism to a question of high or low functional skills.

Forget the Spectrum.

But I want to go one step further. I want to suggest that along with abandoning the high- versus low-functioning distinction, we should scrap the image of a spectrum altogether. When we use this term, we evoke a kind of linear gradation, with some people lower down, or farther back, on the scale than others. But one problem with this approach is that people are assigned their place on that spectrum according to different criteria. Is it IQ? Is it verbal communication? Is it eye contact? Social skills?

Someone with limited verbal skills may well have an off-the-chart IQ. Or someone who can appear gregarious and outgoing in public may be masking significant social struggles, only to melt down in private. Where would you place each of these people on the spectrum? How would you decide? And most important, what purpose does it serve?

The Autism Ball.

Rather than talking about a spectrum, I’d like to suggest we talk about a sphere—a big ball of wibbly-wobbly, autism . . . stuff. There’s no low or high end. There’s no up or down or forwards or backwards. You just happen to be somewhere on that sphere, and your fellow autistics are somewhere else on it. No one is farther along than anyone else. No one is of greater value than another because he or she is “higher functioning.”

This is why I like the Doctor Who clip. It paints the picture of time, or in this case autism, as something that isn’t static but full of life and energy. And that makes it unpredictable: wild and mysterious, wonderful and dangerous.

So let’s imagine a ball that contains all the possible symptoms and manifestations of autism, all wibbling-wobbling around. Things like hand flapping, mind blindness, rigid thinking, sensitivity to loud noises, toe-walking, perseveration, narrow focus of interest. Imagine that ball also containing the comorbid conditions connected to autism: OCD, depression, ADHD, ODD, etc. Finally, imagine that this ball contains the positive traits of autism: laser focus, attention to detail, unflinching objectivity, a quirky imagination, a strong sense of justice, and an innate innocence.

Now, imagine your own ASD profile as a line running through the ball in one end and out the other end. As that line travels through the ball, it intersects with the various ways your autism manifests itself—not all of the traits, just the ones particular to you. No two lines are in exactly the same place, and no line is in a better position than another. They’re just there, marking out their own individual quirks and challenges, strengths and gifts.

High? Or Low?

All of this theorizing has a point. In an earlier post, I described how misleading the term “mild autism” can be. I gave some examples from my own kids of how difficult things can be for them, even though they would be considered high-functioning. As Robison said, people with high-functioning autism still have autism, and it still affects them profoundly.

We recently went through a rough patch with one of our kids, in which we saw just how much he keeps things hidden inside of himself, especially his awareness of how different he is and how hard it is for him to feel like he fits in. But on the outside, he presents as a clever, quick-witted, amiable boy. So while he seems very high-functioning, a lot of “low-functioning” stuff is going on underneath the surface: depression that can keep him in bed for two days straight, lack of empathy, misunderstanding of other people’s emotions, learning glitches, and an inordinate need for physical stimulation. He can navigate the outside world, but only for a time. Then he shells up when he’s home or alone. Where would you place him on the spectrum? Is he low-functioning or high-functioning?

Then there’s another one of my boys. You need only five minutes with him to “see” the autism: his odd gait, his lack of eye contact, his unusual speech patterns, his stimming, and his tendency to disappear within himself for a time. But hidden behind all of these quirks and tics is a very intelligent, sensitive child with keen insights into his own behavior and the people around him. Where does he fit on the spectrum? In the higher-functioning part of the line? Or the lower? Why?

Get on the Ball!

Mind you, most of this is irrelevant to me. I just look at them as my kids, with all of their strengths and weaknesses, their beauty and awesomeness, and work with each of them based on who they are. But it does make a difference in the universe outside of our home. It makes a difference when I attend IEP meetings or when I have to explain some unusual behavior to a friend or neighbor. It also makes a huge difference in the way society treats people with autism. If you’re a Bill Gates kind of autistic, you are given as many opportunities as you want. But if you’re nonverbal or if you’ve got some other trait that people might call low-functioning, you’ve got fewer chances to show just how awesome you are and what you can accomplish. And that’s sad, because you risk accepting a bleaker narrative about yourself and your potential than if you were given the opportunity to shine.

If we can get away from defining people based on their so-called levels of functionality, we can get closer to seeing each person as a precious individual with his or her own unique set of talents. We will stop assigning each person a value based on what he or she “contributes” to society. Each person is a gift, and you don’t assign a value to a gift based on its usefulness. You treasure it for what it is: a token of love from the One who gave it to you.

So get off the line and get on the wibbly-wobbly ball!

It’s All About Us

Video

I’m so proud of my oldest daughter. All by herself, without telling us, she produced this video for a project in her Aspergers-only school. She doesn’t often tell us what she’s thinking—not uncommon for any 13-year-old girl and even more prevalent with girls on the spectrum—so I was blown away when I saw this.

Why We Cry. . .

kiss_cheeseburgerRecently, a friend at work sent me this story about a girl with autism who was treated very well by the staff of a Chili’s restaurant in Midvale, Utah. Apparently, the Facebook post that this story was based on has gone viral, with nearly 50,000 comments. And I can see why. If you have one or more kids on the autism spectrum, you don’t expect people to go out of their way to help you or your kid. Instead, you get used to the baffled stares, the cluck-clucking, and the occasionally mean comments about your children and your parenting skills—or lack thereof.

For Katie and myself, whenever we contemplate going out to dinner, we have to include a few questions that most families wouldn’t bother to ask. Questions like: “Is the place too dark? Too bright? Is it noisy or quiet? Is there plenty of space between the tables? Do we know if the staff is flexible? Is there more than one way out in case of a melt down or in case one or more of the kids needs to take a break and get some fresh air?” So as you can imagine, we don’t go out that much, and when we do, it’s usually to our local McDonald’s, where many of the people already know us.

Anyway, as I said, I read this piece about a week ago, and it kept popping up on my Facebook account. Friends messaged me about it, or posted it to my wall, or shared it on their own walls. Clearly, it moved a lot of people. And one of the best reactions to this story I have read comes from a man in Canada who has a son with autism. His name is Stuart Duncan, and he writes a blog called “Autism from a Father’s Point of View.” Check it out, and see what you think.