A Breach of Trust at The Mount

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Take a look at this article from The Washington Post. It covers a controversy that has been roiling the campus of my alma mater, Mount St. Mary’s University, in Emmitsburg, MD, for the past few months. It seems that the newly-installed president initiated a survey for all freshmen to take early in their first semester. It was presented to the students as a way of helping them get to know themselves better as they transition from high school to college, and to help them understand better “the person you are and could become.” Fair enough. Everyone likes taking personality inventories and surveys like the Myers-Briggs Type Indicator. It’s helpful to know what instruments like this tell you as you begin your academic career.

Only that’s not what the survey was really about. It was designed to help the university identify which students were at the greatest risk of dropping out so that administrators could encourage these students to leave early in the semester. And it was done in the hopes of boosting the school’s retention rate, thereby getting it better ratings in places like the US News ranking. The information in the survey was meant to be shared and discussed, not just scored and returned to the students for them discuss with their advisors.

Probing, Inappropriate Questions.

Now, the misrepresentation of the survey’s purpose is bad enough, but what’s worse is the fact that some of the questions are one-sided and not really related to its stated goal. Have you experienced a death in the family in the past year? Are you taking on major student loans? I don’t see how questions like these can help the students come to know themselves better.

But wait—it gets worse. An entire section of the survey is dedicated to the student’s mental health. They are asked how strongly they identify with statements like: In the past week . . . I felt depressed. I felt that people disliked me. I thought my life had been a failure. These are very personal questions, and the students should never be asked to divulge this kind of information—especially in a survey that is not kept confidential. They are also asked if they think they are calm and emotionally stable. Can they be trusted with money? Are they a hard worker? Have they been obsessed with a certain idea or project and then lost interest?

Then comes the final indignity. The closed-ended section of the survey ends with a question that comes out of the blue: Do you have a learning disability?

Seriously?

A Breach of Trust.

The best word I can find to describe the survey and its intended use is repugnant. Targeting for removal students who report feeling unstable is bad enough, but then expecting them to divulge whether they have a learning disability crosses several lines.

First, a student with a disability has the right not to disclose that disability to the school. At all. Ever. It is no one else’s business except the student’s—and anyone to whom he or she wishes to reveal it. It’s like Federal HIPAA guidelines; this information is protected by law.

Second, if a student does disclose a disability, the school is obligated to work with that student to determine the appropriate “academic adjustments” that will ensure that he or she is given an equal education opportunity. While not as stringent as the IEP process for elementary and high school students, the Americans with Disabilities Act lays out specific requirements for colleges—at least for those colleges, like Mount St. Mary’s, that accept government funding.

Finally, the school is obligated to keep this disclosure confidential. A teacher may not tell other teachers or students without the student’s permission. An advisor may not tell the president or dean. Again, it’s up to the student to decide who should know and to inform the appropriate people.

Elite Enclaves?

What is disturbing in this story is the implication that someone with a learning disability doesn’t belong in college. Or that someone struggling with anxiety or depression should drop out. It turns colleges—especially small, private ones like The Mount—into enclaves for the elite and privileged, for the well-adjusted and socially savvy.

But there are plenty of people with disabilities and disturbances who are more than capable of succeeding in higher education. What’s more, plenty of these people have the potential to go on and do great things with their lives—and great things for the people around them. Robin Williams comes to mind. So does Theodore Roosevelt. Or Charles Shulz. And, of course, Temple Grandin.

Not to mention, the presence of students who “deviate from the norm” is a great gift to any campus. Not to get too maudlin, but students like these challenge their peers’ assumptions and prejudices. They redefine the word “ability” for their teachers. They are a humanizing influence, opening people’s minds and hearts at a time in their lives when they are making crucial decisions about the kind of person they want to be.

I have children who would absolutely bomb on this survey, but who are earning As and Bs in high school. How would they fare? Or worse, what would they think of themselves when asked all of these questions? I hope they would have the common sense to either lie or leave them unanswered. I would be thrilled if they had the courage to challenge the whole thing and refuse to answer a single question. But I don’t know how they would respond. I can’t help but think of how questions like the ones above could convince someone that he or she really doesn’t belong . . . when it’s just not the case.

Praying for a Turn-Around.

I spent four wonderful years at The Mount. I graduated Summa Cum Laude and went on to earn a masters degree and pursue a meaningful, successful career in Catholic ministry and publishing. Much of that I owe to the education I received there and to the spirit of camaraderie and Christian charity I experienced there. But the first semester of my freshman year was hell. I was homesick and depressed. I felt overwhelmed by the work load. I started off in a dorm room with obnoxious, mean-spirited roommates. I didn’t know how to navigate the social mores of a college campus. It took me a while to adjust, to find my niche, and to settle in. Once I did adjust, however, there was no stopping me.

I would have failed that survey; I would have been encouraged to leave. But that didn’t happen. There were enough faculty and upperclassmen who knew how to help freshmen like me find their way. They embodied the best of The Mount—and the best of the Catholic faith. It saddens me deeply to see this happening at an institution that means so much to me. I can only pray that things will turn around soon.

Soooo Tired . . .

Madeline Kahn Tired

How tired am I? Let me count the ways.

Physically, I’m tired from the early morning wake-ups from the youngest and the late-night conversations with my wife about the kids’ various challenges.

Emotionally, I’m tired from managing melt downs, redirecting perseverations, calming anxieties, and comforting socially unaware kids.

Mentally, I’m tired from attending doctor appointments with my kids and trying to keep track of which child uses which medicine, and the various effects and side effects each one experiences.

Organizationally, I’m tired from trying to figure out how to schedule therapy sessions for the kids and still keep on top of my fifty-hour-a-week job, as well as take care of Katie. And myself.

Motivationally, I’m tired from trying to help the kids who tend toward anxiety to keep moving forward and not give in to their frustrations.

Spiritually, I’m tired from battling dealing with my own bouts of fear, frustration, and anxiety.

Yes, I’m tired. And if I’m tired, just imagine how tired my kids must be. But that’s a different subject for a different post.

An Attitude against Platitudes.

I don’t like to complain because I don’t want sympathy or, worse, pity. But the plain truth is that this autism parenting gig is hard work. There are so many twists and turns to ASD that it’s next to impossible to try to plan for the next challenge. Because every person with autism is mind-bogglingly unique, there is no reliable road map to guide you through the terrain. And because most other ASD parents are worn out traveling their own path, it can be hard to connect with fellow travelers—at least anyone  who has the time and energy to listen. (Thank God for Facebook!)

So if I don’t like to complain, why am I . . . complaining? Because every now and then I like to offer a corrective to the platitudes that special-needs parents can hear. Sayings like:

  • I don’t know how you do it.
  • God only gives special kids to special people.
  • You must be really strong to handle all of this.
  • I could never do all that you have to do.

PTSD Parents.

Mind you, these sayings are usually offered in good faith and come from a place of love and respect, so I don’t want to dismiss them—or the people who say them. But idealizing special-needs parents can be similar to the way we lionize the men and women in the military. We call them heroes and warriors and guardians of our freedom. And usually that’s what they are. But such vaunted language can cloak the emotional and psychological trauma that many who have been in combat have experienced. We sanitize the brutality and dehumanizing power of war by putting “Support Our Troops” magnets on our bumpers and applauding soldiers in the airport. But these very soldiers are bearing a burden few of us can imagine—and the Veterans Administration is woefully underfunded..

I don’t mean to compare my experience to that of someone who has been shot at, or worse, who has had to kill a fellow human being. But according to a University of Wisconsin study, parents of special-needs children often exhibit stress levels comparable to combat soldiers. In fact, many of these parents are diagnosed with PTSD or situational depression. And looking back on some of the instances of high drama we’ve experienced over the years, I can easily see how this is the case. As I said above, this is hard stuff.

But back to the not complaining point. The thing is, we don’t think about how hard it is all the time, so we don’t usually complain. It usually happens only when we get really, really tired. Usually  we’re just too  busy trying to keep up and keep awake. It’s not that we’re heroic; it’s just that we love our children. Like any other parent does.

Nothing Special.

So to those who say, “I don’t know how you do it,” the answer is easy: I’m not aware of any alternatives. You don’t count the cost when someone you love needs you. You just do what you need to do.

Anyway, thanks for reading. I didn’t have a major point to make. I just wanted to get this off my chest. Katie and I are not heroes. We’re not special or extra blessed. And I’m sure most of you, if not all of you, would handle our situation just as well as we are doing—and maybe a whole lot better! We’re just everyday people trying to take things one day at a time. And we’re tired.

So. . . . Very. . . . Tired.

P.S. For those who don’t recognize it, the picture at the top is of the incomparable Madeline Kahn, as Lili von Shtupp, singing the song, “I’m Tired” in Mel Brooks’ Blazing Saddles. Here’s a link to the song. And if Mel Brooks isn’t your thing, well that’s a crying shame. Let me offer you a different visual.

Tired-Minion-Coffee-Best-Funny-iPAD-iCloud-WallPaper

“We Are Not Diseased”

Famous Autistics Word Cloud 5

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.

Words from the Unwise

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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 Fortunate Slip of the Lip

Fourth Doctor Gobsmacked

Note: This post originally appeared as a guest post on the awesome “Confessions of an Asperger’s Mom page. Many thanks to Karen for inviting me to share my story with her readers. You should definitely check out her blog, as well as her Facebook page. She has a lot of wisdom to share.

I could have sworn he was downstairs. Really. I wouldn’t have said what I did if I knew he was in his bedroom—well within earshot. As Katie and I were going up the stairs this afternoon, I was recounting how this kid (#4, nine years old) had taken such good care of his younger brother (#6, six years old) at the neighborhood pool. If I had known he was in his bedroom, at the top of the stairs, changing out of his bathing suit, I would not have said, out loud:

“And [this kid], our autistic son, did really well today. So much for the old myth about empathy!”

“Dad? What does ‘autistic’ mean?”

My heart sank. It was probably the first time he ever heard himself described as autistic.

It’s not that I was hiding it from him. I had been wanting to tell him for some time now. I just didn’t know how to do it. And I didn’t want to manufacture some Hallmark moment where there would be this big reveal and a whole new understanding. I wanted it to be natural and, well, right. (Plus, I was also a little chicken.)

No Good Opportunity.

You see, he’s one of six, and they’re all autistic. His two older brothers and older sister already know about their diagnoses—and they found out more or less by accident as well. At least, it didn’t happen on my terms and in a way that I wanted it to. (Insert chicken squawks here.)

So autism is pretty much the lay of the land in our family, and that means he doesn’t really stick out at home enough to wonder why he’s different. All the kids present a pretty consistent profile of being on the higher-functioning end of the autism spectrum, so he’s got a built-in tribe of autistics to relate to.

He also manages to blend in pretty well with his peers at school—at least so far. He’s only in fourth grade, too which means that his classmates are too busy running around on the play ground to pay much attention to his quirks or language glitches. Plus, he works hard to try to fit in. It’s not perfect, and it can lead him to come home tired, moody, and explosive. But it works.

So there didn’t seem to be any need to explain autism to him. (Squawk!!)

Stumbling into The Talk.

Anyway, there I was, completely unprepared for the talk. But there was no getting around it; I had to answer his question.

I brought him into our room along with Katie, and asked him, “What did you hear me say?”

“You said I was autistic and I have empathy.”

“That’s right. Do you know what empathy means?” (I was stalling for time.)

“No.”

“It means that you care about how other people feel. It means that you can feel their feelings, and you want to help people who feel bad. That’s a really good thing, and I’m so glad you are like that.”

“Okay. What about autistic?”

I hesitated, not sure exactly what to say. Then Katie stepped in and saved me. “It means you think outside of the box.”

O merciful intervention! I knew that this kid thinks too literally to grasp metaphors like that. But that was a good thing; it gave me something concrete to react to. I didn’t have to come up with a complete explanation out of nowhere. The talk was happening all by itself.

Autism Is. . .

So I told him that “outside of the box” means that God made his brain a little different than most other kids’ brains. I talked about the cool gifts this brain gives him, like his laser focus on math and cooking and singing. He’s got some real talents there. Then I talked about challenges like how he can have a hard time putting words together or how he sometimes struggles understanding when someone’s talking to him. I hit on a couple of others, like emotional regulation and his need to jump around and get giddy sometimes. Then came the Big Finish.

“So there’s something a little different about you. That doesn’t make you weird. Just different. Autism isn’t a disease or a sickness. It just makes you special. Got it?”

“Yeah.”

“Any questions?”

“No. Can I go type on the computer now?”

“Sure thing. Knock yourself out.”

No Drama.

And that was that. No fuss. No drama. No nothing. None of the baggage that the world gives to the word autism. None of the baggage that I can give it, either. Just another word to help him describe himself.

In a way, I’m glad that it happened like this. I didn’t have time to worry about developing the perfect speech. I didn’t have the luxury of turning it into a thing, which might risk emphasizing the difference more than I wanted. I didn’t have enough of a chance to screw it up, either.

I also liked the way it became just another thing that happened today. Mind you, I’m not sure how much of it he really grasped. But I didn’t want to push. It doesn’t really matter anyway. We began a conversation today that will unfold and deepen over time.

No Big Deal.

So there you have it. My son found out that he is autistic, and he’s doing just fine. An inopportune-but-opportune moment presented itself, and we did our best with it.

It may not sound like the best approach, but there’s something really appealing and “normal” about things like this happening within the natural flow of everyday life. It helps the kids see that it’s not a big deal. It’s one facet of who they are, and it has no bearing on how much we love them or how much dignity or value they have—in our eyes or in God’s eyes.

That’s four down, two to go. I think I’m getting the hang of this thing. So bring it on!