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.

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.

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.

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“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.

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!