Not being defined by my disability

The school year is beginning anew. Classes are meeting for the first time. Professors are forming first impressions of their students. Freshmen are arriving on campus and trying to navigate the pre-established social order.

The arrival of the freshmen means there are 650 new students who don’t know about my Tourette’s. This equates to 1300 eyes turning to stare as I walk down the main pathway. 650 voices whispering crude jokes, nasty comments, or just the curious, “What is that dude’s problem?” These are 650 friendships killed before they ever had a chance to blossom, because people are afraid to get to know the weird kid (Is he high or something? Maybe he’s just crazy…)

As I pondered this issue, I came up with a few solutions.

The first was a sandwhich board reading, “Yes I have Tourette’s. No staring at me won’t cure it.” But that  would just draw extra attention to my differences, something I truly wanted to avoid.

The second option was to say nothing, to remain completely mum about the issue. The TS acts as a built-in filter against people who are judgemental or shallow, so I would be guaranteed only to start friendships with those who had matured beyond the “appearances are everything” stage. But then I realized this was college freshmen I was talking about. I would bet less then five of the 650 have passed that developmental milestone.

The third option, the only one of which had a chance of being effective, was to casually talk about my Tourette’s in conversations where it was relevant. This might sound impossible (when is TS relevant, and how do you casually mention it?) but I’ve accomplished it three times already and have only had positive reactions.

• Time 1: In the Freshman seminar I TA, we had students take as many jellybeans as they desired, and then for each jellybean reveal an interesting fact about themselves. My three: -In 9th grade I had to jump into a limo with a man I’d never met in order to escape a man on PCP with a knife and a piece of broken glass. -I have Tourette’s and make weird noises and movements sometimes, but it’s a neurological disorder which isn’t contaigous or deadly. -I was bitten three times this summer by a child angry I put on the wrong Sesame Street Video (show off arm scars). This way I got the information out, but I ensured I had other topics which would make far more interesting conversation fodder after class. (Moreover, I won for most outrageous factoid with the PCP story).
• Time 2:  In my autism investigations seminar, we have to discuss our interests in neuroscience in a roundtable fashion. After I talk about my interest in autism, I say, “I’m also fascinated by the use of drugs other than antipsychotics to control Tourette’s, particularly nicotine and marijuana. And yes, I know from personal experience that both are effective.” The class laughed, and though it might have registered that I have TS, the fact that I know where to find good bud will trump any reservations they have about my disability.
• Time 3: This time involved a prolonged tactic. The professor was very strait-laced and there was only time for one interesting fact, so I had to use the TS one. But I made sure the students didn’t leave with TS being the only association with my name. During a discussion of the importance of the Victorian period, I made a bold claim about no one remembering female authors who wrote prior to the 1800s. Thi stimulated a great deal of debate and discussion, and suddenly I was the “daring statement guy” instead of the “guy with Tourette’s.”

I have two classes left which have not yet met, one beginning today and the other on Monday. For both I plan to utilize one of the three tactics listed above. By the time Monday ends, I will have told roughly 100 people about my TS, not counting those who knew from last year. On a campus with only 2100 students, gossip spreads like wildfire, and by next Friday, I should no longer be an oddity, but rather a kid whose had cool adventures, smokes good green, can have a stirring intellectual debate, and oh yeah, has Tourette’s but not the cursing kind or anything.

A New Adventure

I arrived on campus early to assist with orientation and class registration. Also arriving early were the international students, many of who were eager to strike up a conversation.

I found them very easy to speak to for a number of reasons. They didn’t have much experience with American culture, so any social faux pas I may have made were attributed to being from two different cultures rather than my own social awkwardness. Additionally, they were excited to be practicing their English regardless of the topic, so I didn’t have to concern myself with trying to keep them engaged; any area where they had the vocabulary to attempt was considered fair game. Third, they were so enthused about having an English-speaking friend that they took all the iniative in keeping the conversation going and organizing times to hang out again, which took the onus off of me to push the most difficult portion of conversing.

I also came to realize that my experience working with Lawrence, Josh, and Charger this summer had prepared me well for communication with non-native English speakers. I had learned to hear through a variety of speech impediments and idiosyncracies, and to anticipate the words the speaker was intending. I had also naturally aquired the slow, clear speech which is most helpful in teaching individuals a new language.

Acting on this interest, I contacted the supervisor of the International Studies department, inquiring about ways to get involved with the international community on campus. I was directed to the teacher of an ESL course which was offered during a free period in my day, and now find myself with a TA-ship here on campus, which I am very excited for.

If you (an individual with ASD) or your teen with ASD is looking for a way to practice social and conversational skills with a nonjudgemental audience, I would highly recommend looking into the foreign exchange and ESL programs in your area. The students could make excellent friends who are both loyal and enjoyable company.

Getting it Right: Empowering a student with a disability

Having a non-classroom-friendly disability (i.e. Tourette’s), I’ve come to an understanding that not every teacher is going to be supportive. Indeed I’ve had some rough experiences including my favorite: “Yeah, I know you have TS but couldn’t you control it during your speech? Tourette’s is so unprofessional.”

But these experiences make me particularly excited about professors who “get it.”

Deciding to start off the semester on the right foot, I sent all my new professors a quick email explaining that I had Tourette’s, didn’t require accommodations (except for the alternate testing location granted by the honor code), and was willing to answer any questions. Then I waited, nervous about how these individuals I’ve never met would respond to this revelation. A week passed and my anxiety grew.

Then today, in my email, sat this message from a professor in her very first year of teaching:

“Thanks for letting me know. Perhaps you might stop by my office hours during the first week of classes and you can give me some tips on how I can be supportive.For example, if there is something another professor has done that helped your experience in the classroom, I’d love to hear about it.”

I couldn’t have asked for a more positive response. She’s not only understanding of the situation, but also aware that her knowledge of the best methods to handle it are limited and she’d appreciate my input. It is every self-advocates dream: a chance to express a preference based on knowledge of what has been effective previously. Professionals that work with the disabled population could save a great deal of time by following that exact method.

I take heart from the fact that this response came from a first-year professor. It gives me hope for how the next generation of teachers will move disability awareness and empowerment forward.

A strange fear

It’s 2pm. I’m drenched in sweat. My hands are shaking, my eyes can’t focus, my blood pressure and pulse are through the roof. I’m in full-set panic mode and I’ve been there for over 18 hours.

Why? Is there a tornado outside my window? A pending terrorist attack? A dog with sharp teeth barking wildly just outside my bedroom door?

No. Not quite. I’m just getting a visit from a girl I practically lived with last year.

It’s a strange trait of mine, and I am not sure if it is a spectrum characteristic or simply a Caleism. I am unreasonably frightened of people I distrust. I would almost go so far as to call it phobic. A few examples:

It is fall of freshman year. Nathan, a friend of mine, has told an insane incriminating story about his roommate, another friend, which I later learn to be untrue. At the discovery of this lie, I begin to fear Nathan. I do a Nathan-check every night before bed, and lock my door every time I enter my room. For some reason, I am convinced Nathan is going to murder me at any moment. This feeling passes in about a month, but to this day, I still get chills every time I pass him on the stairwell.

Winter of sophomore year. I have just ended my relationship with Kelly, and am now home for Christmas break. Everytime we leave the house, I enter full panic mode. What if we run into Kelly? What if we sit down at a restaurant, and then she walks in the door? I avoided the mall and all the restaurants we used to hit together, knowing that if I saw her, my instinct would tell me to run screaming in the opposite direction.

Earlier this summer. I meet a woman who wants to work with the AOC to set up an art class for kids with disabilities. She is discussing her plan, and then pauses to speak to Charles, a 15-year old with autism she wants to join the program. Her description to him indicates her knowldge of autism is minimal (lots of metaphors and language with double meanings). I start to panic. For the next week, I develop the equivalent of a verbal tic related to this woman. Every 5-6 minutes, without fail, I have to mention how uncomfortable this woman makes me, or how I don’t trust her. Then the clock will reset, and I have to say it again. If I try to prolong or skip saying it, the thought fills up my head so I can’t do anything else.

So now I’m practicing deep breaths and pondering an alternative medicine calming agent, because in five hours I am going to be face-to-face with my roommate’s girlfriend. I really don’t think I can handle this.

Non-verbal = non-human?

It was noon and I was preparing Josh’s lunch as he waited anxiously for the sandwhich. As I threw things on (meats, cheeses, sauces), I asked the mom which parts to include on his sandwhich, and which to leave off. Because Josh has no speech, I didn’t bother asking what he wanted, and merely used the mother as a mediator.

The idiocy of this dawned on me when I was getting a drink for Lawrence. Lawrence as echolalic speech, so I can’t ask him to make a choice verbally. But I did grab two bottles, set them in front of him, and allowed him to grab the juice he wanted to drink. He didn’t need words to clearly convey that he wanted strawberry banana juice over fruit punch.

The cliche rang in my head, “Not being able to speak is not the same as not having anything to say.” Of course Josh has opinions, and he has the right to choose the ingredients that are added to his sandwhich. Would it have taken much longer to ask Josh to grab item by item, everything he wanted included? Probably. Would it have been worth it to give Josh some control over even this tiny aspect of his life, rather than ignoring the fact that he is a human being with his own desires, which cannot be channeled directly through his mother? Absolutely.

Josh was denied yesterday a sandwhich made exactly the way he wanted it. But more importantly, he was denied his opinions, his rights, and his humanity. I can’t ever do that to a child again.

Physical Contact: Where’s the Line?

My mom works as a nurse at a school for students with both DD and autism diagnoses. One of the boys who goes there, “Jared” is 15, and has DD, autism, and OCD. He’s on a multitude of medications, and his parents want him out of the house. They have already been mandated twice by the state to pick him up at a hospital where they had left him. They hired an attendant to cover all of his needs at home. Needless to say, he doesn’t receive much affection to home. Working with him, however, is TSS “Bob”. Bob has been by his side for the past 18 months, and is generally agreed upon to be the best possible match for Jared. Whenever Jared gets upset, Bob will wrap him in a bearhug, and say, “Who loves Jared?” and Jared will respond “Bob.” It’s touching to all who witness it.

Well, almost all. Last week Bob was informed that the school had a strict policy against TSS’s touching students in that manner. Bob would have to cease such activity or be fired. Bob was forced to comply, and has to deny Jared when he comes in for a hug.

When my mom relayed this story, my first thought was, “gee, if I worked there, I’d have been fired months ago.”

Physical contact is a major component of how I interact with all three boys I work with. Lawrence likes to be snuggled with pillows, and to have raspberries blown on his cheek. Both he and Josh like to be lifted and spun, first in circles, then in a pendulum motion. All three boys sit on my lap to read stories, and all three, of course, love to be tickled on the arms, legs, and belly.

A great deal of progress has occured while physical interaction is occuring. Lawrence can now say “pendulum, please” and name the part of his body he wants tickled (i.e. “tickle arms please”). Josh makes a circle with his hands when he wants spun. Charger is discovering the use of adjectives when tickled “faster, slower, stop, go, more, less”.

All the parents seem to be okay with this sort of contact (at least, they’ve made no comments indicating they don’t approve). But I’ve started wondering about whether TSS (or therapists or babysitters or whoever) should be having this contact with kids.

On the one hand, it creates a great deal of potential for abuse, particularly in kids who are non or barely verbal, and thus could not report a crime against themselves. On the other hand, if we are trying to teach kids the benefits of interacting with other people, and then we shut down their attempts which involve a physical component, aren’t we sending them the wrong message?

I’m not sure what the solution would be. Only allow contact in the presence of the parent? Limit contact to certain parts of the body (private areas are obviously already off-limits)? What do you think? Do you let the kids who interact with your children to have physical contact with them?