Describing Autism to those with Limited English

I haven’t been around much lately, and for that I apologize. I have a 24-credit load in addition to 15 hr/week job, and things have been a bit stressful as of late. So 2 posts a week is probably going to be about what I can manage at the moment. When I’m working more with the boys or find some more free time, I will return to updating more frequently. Please bear with me until that point.

One of my new activities for this semester is tutoring Asian students in English as a second language. We have nine Chinese students and 1 Japanese student who are studying in America for the first time and have a subpar command of English. They are naturally very curious about what I am majoring in and the work I do outside of the school. Which led me to the issue of how to explain “autism” to individuals who spoke very little English.

So, over the past several weeks, I have needed to really focus on how to describe autism. The task is gargantuan. How do you explain in a brief paragraph something which presents differently in every  affected individual? I began by looking for unifying factors common to Lawrence, Josh,  and Charger, and between Carl, Justin, Steve, and myself. Here is what I wound up coming up with to say to the ESL students.

-”I work with children who have autism. This means that sounds, tastes, and sights which might be pleasant to you can be annoying or upsetting for them. They have difficulty learning how they should behave in front of other people, and might look or sound odd to other people. Although some things which are easy for most people, like making friends or playing games, are hard for them, they often are very good at something which other people find very hard. For example, one boy could read at age 2, one knows every song on every DVD he owns, and one is very good at fixing broken toys. I work as a tutor for these kids, helping them learn to talk, play games, and learn to deal with the sounds and sights which they find distracting or annoying.”

How do you feel about this summary? Is there something you think should be included? Omitted? Can you see yourself (or your child) in this description?

Rid of Risperdal

After a year on the drug, Lawrence was finally weaned off of Risperdal while in the feeding clinic. He now takes Zoloft for his OCD, but this is his only medication.

For Josh, Risperdal was a miracle drug. He calmed down, stopped biting, paid attention, and made social connections. It was a perfect fit for his needs.

For Lawrence, this was not the case. I hadn’t known Larry before he started, but I’ve certainly seen a difference since he stopped. He’s hyper, but not excessively hyper. He dances and sings and runs just like a typical six-year old. He gets excited to go for a ride or get in the wagon. He’s upgraded his physical shows of affection, and is learning words at a much faster pace.

There have been a few drawbacks to taking him off the Risperdal. Changing his diaper used to be a 12-second procedure, now he always runs away before I can even clean him. The process has become a four-minute battle, and that doesn’t even count trying to get his pants back on. He’s also developed a, in Aaron’s words, “love for his peep”. Regardless of how many times he try to redirect him, as soon as we turn around his hands are back in his pants. Anyone have any advice on this? We don’t want to give him a complex, but at the same time he can’t spend his time with his “peep” hanging out of his diaper.

Overall, however, I think removing the Risperdal was a good decision for Lawrence. He’s becoming more engaged and growing and learning faster than ever before. I hope this works out for him.

Autism and Attachment

Taking an autism seminar course, I’ve heard a great deal of myths surrounding autism in the past several weeks. One which is constantly recurring is “Autistic individuals cannot form attachments to people” or “autistics connect to objects not to people.” Is this true? I’ll present some anecdotal evidence and let you decide for yourself.

After working with the triplets and Charger all summer, I had to take a break to get my school affairs in order, and the boys needed time to settle into kindergarten. So over the past two weekends, I’ve been able to see all 3 boys for the first time in 4-5 weeks. Here were their responses upon seeing me.

Charger: “Cale! Cale’s back! He came back for me! He came back to play with me. Charger is happy. Charger is surprised. Cale has come back!”

Josh: I get into the car and turn around to smile at Josh. His eyes light up, and he reaches for my arm. I put my hand in the backseat and he plays with it the whole ride home.

Lawrence (after six weeks!): I walk into the bedroom where he’s laying on his parents bed, hidden under some pillows. Larry’s dad says, “Lawrence, look who’s back. It’s your buddy Cale!” Larry lifts his head slowly like he’s not sure what to expect. Then his face breaks out into a giant grin and he reaches for me. We collapse onto the mattress together and roll around kissing and laughing until we fall onto the floor where he pushes his fists into my cheeks (his signature expression of happiness/affection). For the rest of the evening, he’ll look over to where I’m standing, smile, and run over to offer another hug.

With this evidence at hand, is there any question about the ability of autistics to form attachments?

Ask An Aspie: More thoughts on Scripting

Since the previous post, I have been thinking a great deal about scripting and the role it plays in my own life. I obviously have the capability for spontaneous speech, but often I find myself resorting to scripts. Why use scripted lines when I can generate my own speech? For the most part, my scripts come to the surface when I’m encountering an emotional issue. Use of scripts can be brought on by three key occurences:

1) A situation where I don’t know how to respond. Say I’m talking to a friend and they bring up something I’m totally unprepared for, like that they’ve been molested or are abusing heavy drugs. My first thoughts are typically a list of movies and songs which include this sort of dialogue. I can pull a line from one of those and use it to stall for time while I try to think of something relevant to say. Or I can use it to deflect/diffuse the situation entirely. Say for example, we both watched a film where a similar event happened to a character. If I pull out an immediately recognizable line from the film, the other participant usually laughs, which then takes the attention away from the difficult subject matter. Mama Mara mentioned that her boys use the phrase “V-E-R-N” from Rainman when there is an issue, and this tends to bring the anxiety level down.

2.  When I’m emotionally overloaded. In times of emotional overload, it seems the whole brain-to-mouth connection is disrupted. I can’t find any words to express what’s bothering me, so I typically resort to a scene which evokes the same emotions even if it does not relate to the triggering event. I’m reminded of a time when Charger, the intern, her boyfriend, and I were playing a game of Sorry, and the boyfriend had to take a phone call and left the table. Charger became visibly anxious, and started exclaiming loudly, “Something is missing! Is it here? Is it here? Is it here?” We could all see the guy, so there was no direct connection to the situation. But what he was broadcasting about his emotions was very clear: The order of our game has been disturbed and I need it resolved.

3. When one lifted phrase can capture a whole scenario. I often say that I think in paragraphs but need to speak in sentences. Everything floats around as fully developed ideas, but I obviously can’t release the whole flood simultaneously. I need to chop it into single sentences presented in a sequence others can understand. I call it the “Brain English to Social English translation process.” But there are times when a line from a movie or book can capture the entire thought floating around in Brain English. For example, a gentleman on campus and I have begun the courtship process, and there is a flurry of thoughts in my mind about the meaning and role of secrecy and the way it is affecting the relationship and how we can work through that. Whenever I’m thinking about the topic, the line that immediately comes to mind is the opener (and closer) of the Outiders: “As I stepped out into the bright sunlight from the darkness of the movie house, I had two things on my mind, Paul Newman and a ride home”. We see it all here, the emergence from secrecy, the idealization of how things could be/who we could be, and the knowledge that practical concerns are preventing us from reaching that goal.

The notion that there are people who don’t process their thoughts in this manner is actually a bit strange to think about. With all the media we take in in our lives, have they seen no one who can capture the thoughts of the moment better than they?

I’m not sure if my explanations are making sense. As the title implies, this post is a work in progress. I have the brain English for it, but I need to translate it into social English and the process is slow going. I will likely be refining these thoughts further as time goes on.

Ask An Aspie: Scripting

This question was submitted by @cleopitty, who asked:

“Why do you believe scripting serves a purpose?”

Consider yourself at the age when you were just beginning to talk. Where did your words come from? Most likely Mom and Dad and other individuals having conversations with and around you. You spent several months studying their every move, and then one day you were ready to start releasing some of your own. The neurotypical world is immersed in the social, so the language that spoke deepest to you was that of conversation.

But consider this time for the autistic infant. People and their conversations are not their biggest prioirty; there’s so many physical facts to take in. So the things he pays attention to are those facts about an interest, whether it be insects, trains, or doorknobs. Most of this information (“content-based”) comes from books, movies, and other sources which provide their material on a one-way basis.

So unlike the neurotypical infant who grows in a world immersed in conversation, the autistic infant lives in a world full of facts, mostly provided by television and books. From this point of view, doesn’t it make sense that while NT kids would learn conversational speech first while ASD kids would learn scripts first?

Over time, as the child spends more and more time focusing on the sources of his facts, he will come to generalize to appreciation to television and books as a whole. So he starts parroting more scripts, ones from all assortments of books and movies. He now has a language, developed from the focus of his infancy.

This language, these scripts, become a basis for trust; things connected to the scripts are things to pay attention to and learn, and are awarded the same belief supplied to what has been directly scripted. This makes the language expandable, slowly at first, until the trust has been generalized to the word-instructor (parent, TSS, or therapist), at which point the language can truly explode.

This process can then burst ouwards as the generalization of trust continues. Soon the child has multiple sources of scripts expansions, and eventually the scripts fade to insignificance. They may still appear from time to time, particularly in times of stress, but there are so many other phrases and ideas available that they no longer prevent a more spontaneous conversation.

I would hold scripting-expansions responsible for over 75% of Charger’s language gains this summer, and highly recommend it to anyone teaching/hoping to teach their child conversational English. The most important aspect is to start very slowly, sticking very closely to the script but only changing or adding a word or two, and then over time (periods of weeks) increasing the amount and variety of changes until you reach a pace for comfortable development.

Some Resources for the Elementary level

I’m taking a “Teaching English Language Learners” class this semester, knowing that a great deal of the things learned here will generalize to working with autistic children. So I should have a great deal of resources to present in the coming weeks.

The first I’d like to mention is the “Oxford English Dictionary for Kids“ .  My instructor uses it when working with children first learning ESL, but I was struck by how similar it was in design to some of the tools we were introducing to Josh this summer.

In the classic version, a large picture sits on one side, and on the opposite side, each item in the overall shot is blown up and labelled. This would be more successful with Lawrence who already has the words but hasn’t yet made the connection with the meaning.

The “Word and Pictures Cards” edition has words on one side and the image on the other. They cover topics ranging from emotions to food to toys and games- basically topics kids like to talk about. They can be carried around separately as flashcards or kept in the original binding for organization. For a family pondering trying the PECS program but wanting to try a simpler form first, this item could be an ideal first step. A content version is also available which could be used in a classroom setting for academic topics.

The third item I liked from the same seller was the Picture Dictionary for Content Areas. From dinosaurs to the civil war, this book has pictures and labels for every subject covered in a typical elementary school curriculum. You can easily make a game out of the pages, covering the side with the labels and asking the child to find a particular picture in the larger setting. This would increase both language competency and tracking skills. This would be great for Charger who has a rather complete basic vocabulary and is now ready to move on to science and history.

In all three books, the pictures are clear, the words are relevant, and the book is visually appealing. As it would be less than $100 for the three book set, I am going to suggest to the outreach center that they order the collection for their resource shelves.

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.