Hope

Hope seems to be a common theme at the moment, and two great sites can offer you some sources: Hopeful Parents (where you can currently find a great post by Mama Mara, about her autistic teen, Rocky), and Gives Me Hope, a website with user submitted stories about events or people that give them hope.

So I thought I would share with you an event that happened today that gives me hope.

I was at a friend’s house watching the newest Star Trek film (the one with the Spock-kiss and the adorable young Chekov). There were four of us gathered, the other three being rather close friends of mine. We had reached the scene near the end, which has Admiral Pike sitting in a wheel chair being pushe around by an assistant. I wasn’t even one processing the scene when I heard the rustle of agitation from the couch across the room. When I asked what the fuss was over, one of them pointed out that several centuries in the future physically disabled people should not still have to rely on assistant-propelled wheelchairs to get around. With all the other inventions, there should be a strong focus on making sure we’re creating technology to improve the lives of all people, including the disabled. There were grunts and nods of agreement from the rest of the couch.

None of those friends are physically disabled, or even have close relatives who are. However, even without a direct personal connection to the topic, they remain aware of and passionate about raising interest in improving the lives of people with disabilities. And that gives me hope.

Here are a few other posts I’ve written about Events or People that Give Me Hope:

• “The Break Room”
• The Letter
• The Neighbor
• My Brother
• My Grandmother
• The Classmates

Rough Week comes to Promising Conclusion

This week with the boys started out very rough. It was a full moon, the weather was changing, and day lights savings was coming into play. To add onto this both boys are having their medication dosages changed. I was crushed by last Sunday’s experience, when Lawrence recoiled from my touch and hid from my presence, not producing a word the entire six hours I was there.

      But I went back this weekend and things had significantly changed. Lawrence managed a “Hi, Cale” when prompted, and used his new words throughout the afternoon to express wants. He smiled and offered kisses and hugs, collapsing in delight when I followed him around the house or mirrored him in a dance. I said to his mother at one point, “It is as if he remembered that he and I were friends”. It was so nice to have the old Lawrence back, one who hadn’t been fully there since his hospital stay in August.

But that wasn’t the high point of the afternoon. That came when Aaron’s friends, the family’s neighbors, were jumping on the trampoline, all six playing a complicated game with a dance. And Josh and Lawrence, of their own accord, climbed into the trampoline to join. The kids in the trampoline switched away from their complicated sequence to make a game everyone could enjoy like jump in a circle or see who can jump highest. Sometimes the insight/understanding held by the neighbor kids who have grown up with these guys is astounding. I hope there comes to be a point when all kids act that way towards others with disabilities.

Asperger’s and College Parties

After staying at a house notorious for its parties this summer and becoming good friends with the people who live there, I have begun to attend parties this semester, an activity I had never done before.

There were many reasons I didn’t attend my first two years:

• too many strangers
• very loud and unexpected noises
• close space with a ton of jostling

all of which can be very irritating to the Aspie. My first plan for this semester was to arrive two hours before the party (note that the holders were good friends of mine), and then leave after a half-hour of partying because the environment was too intense. That way I got to enoy the festivities but avoid the overload.

When my friend voiced her concerns to me that I wasn’t enjoying the parties, I explained to her how the above reasons make me uncomfortable. She nodded, considered for a moment, and came up with a plan. “How about,” she said, “we develop a break room. My room is in the back of the house away from the noise and strangers. And whenever you’re feeling overloaded or stressed, you can chill in the break room.”

I was struck by the idea; it was an ideal solution, one which most parents of autistics are already well aware of as they implement it at birthday parties, holidays, and other social gatherings.

So last night I attended my first full party (2.5 hours). I mingled and socialized in the large group for some time, but I also enjoyed the break room a great deal. Other friends passed in and out of the break room as we created a party within the party, a place for friends of the house’s owner to chill away from the strangers and their annoying habits.

And you know what? I had a blast. I got to hang out with friends I hadn’t seen in awhile, watch several games of beer pong, enjoy some good music, and overall enjoy a stress-free, relaxing evening. Most importantly, I established that social parties are  not an impossibility for me. With a simple accomodation we turned a dreaded event into great fun for all.

Are all autistics introverted?

I received an interesting search query this week, and I found it quite odd because I was just explaining this notion to a friend a few days before. This search term read: “Can you have an autistic extrovert?”

Autistic individuals, like their neurotypical counterparts, come with the full range of personality traits. There are some, like myself, who are quite introverted, speaking only to close friends and never in groups. And there are some who are extroverted, always ready to meet a new friend or lavish some affection. And there are of course some who fall in between, or who show varying levels of extroversion depending on the circumstance.

What I find interesting is that opinion on this question tends to fall either in the extremes with the assessment that either all or no autistic individuals are extroverted. In the social group I helped run, one of the kids was described to me as “one of the Asperger kids, so very in your face, won’t be quiet, needs your attention-kids”. And although she was a very extroverted individual, she was clearly not the only possible face of Asperger’s. Others have told me, when I’m describing Joh that, “he doesn’t sound autistic. Not if he tries to get involved in games and get people’s attention.”

One reason I think the “all autistics are introverts” stereotype is the idea that most autists, regardless of general temperament, need time free from people and the social demands they bring. Others then generalize this need for solitude with a constant need to escape people and then conclude that all autists must then be introverts.

I am curious about your experience with autism and temperament.

 If you are the parent or caretaker of an autistic individual please answer this poll.*

 

 

If you are autistic,  please answer this poll. **

* If you have multiple children, please feel free to vote once for each child.

**If you are the parent of an autstic individual, and are on the spectrum yourself, please vote once in each poll.

I am very interested in seeing the results.

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?

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.

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.

Learning to Respond

There is a scene in the Adam trailer when Adam says to his female co-star, “I can see that you’re upset. But I don’t know what to do.” It was the line that hooked me into the film because I’ve expressed that same thought so many times myself.

But I’ve realized that recently, I’ve been saying that less and less. I’ve stopped talking and actually doing when someone is noticeably riled or hurt. And for that, I can thank Lawrence.

When most people get upset, there is no obvious clue as to how you should respond. Nothing about a crying person suggests that holding them or rubbing their shoulder would make the crying stop. But Lawrence isn’t like most people. When he has a need you can meet, he’ll show you explicitly what he wants. If a hug would help, he will grab your wrists and pull your arms around him. If he wants you to rub his shoulders or back, he’ll bring your arm to that location. If he just wants you to sit next to him and respect his grief, he’ll hold your arm at just the right angle that you won’t be able to get away without creating a disturbance in his calm.

He’ll also let you know exactly how long and how strong he would like the hug to be. If he wants a tighter grasp, he’ll push on your hands. If you try to let go too soon, he’ll pull you back, and if you insist on hanging on when he’s done, he’ll push you away. Every action you take, he provides immediate corrective feedback.

And slowly but surely, I’ve been able to generalize what I’ve learned from Lawrence with other individuals. It is how I was able to respond to my suitemate with a tight hug after a break-up, or rub my mom’s arm consolingly after a minor car accident. No longer am I the tenth grader who, in response to a friend’s tears, sat and stared for 15 minutes before someone else finally came into the room to see what the fuss was about, and, after a half-hearted confused gesture from me, began to actually console the bothered party. In situtations like this, I can now determine a correct response and act upon it.

I took the job with Lawrence because I thought I could teach him quite a bit. And although he is gaining language and play skills from me, I am learning a great deal more from him.

Conversing with Kids

Yesterday, we left Josh playing with the hose to tend to a Lawrence melt-down. When I reemerged to check on Josh, he was in the arms of a neighbor who was putting him on the swingset. I thanked the neighbor for watching him and then began to push him on the swing.

Next to us swang “Llana” one of the new neighbors. She is somewhere in the age range of 7-9, I think. Llana was full of questions such as: “Why isn’t Josh wearing a shirt? Why is Josh still in diapers? How old is Josh? Does Josh go to school? Why does Josh like the hose?” I answered them all to the best of my ability.

Then she got to: “So what does Josh like to do, anyway?” I told her that Josh likes to swim and jump on the trampoline and watch television and cuddle with his mom and play in the hose and eat bacon. Then I asked what she likes to do. She listed pretty much the same activities.

She then paused and I saw a flash of insight. “I guess Josh likes to do a lot of the same stuff I do. Maybe he and I aren’t so different. He has autism, but he is still a kid, just like me.”

And for the rest of the afternoon she tried to include Josh in her games. She stopped addressing me and spoke to him. “Hey Josh, look at this! Hey Josh, Can I run in your hose? Hey Josh, wanna go on the trampoline together?” And the two of them grinned and giggled the whole afternoon through.

A friendship had formed. Because even though Josh has autism and Llana doesn’t, they’re both kids, and that’s what kids do.

So Proud

Twenty Years ago, my mom got called into a large office where three “experts” sat to discuss her son, my brother. Carl was in kindergarten, was barely speaking, didn’t know his kindergarten basics like the alphabet and counting, and couldn’t draw a stick figure or cut a straight line. These “experts” told my mom that Carl, who has a diagnosis of autism, cerebral palsy, ADHD, and developmental dely, would never be a productive member of society.

They said that despite the years of OT, PT, and Speech that they would offer, he would never graduate high school, hold a job, drive a car, have a girlfriend, or live independently. They recommended looking into long term care facilities because the sooner you get on the waiting list for those places the better.

8 years ago, Carl took his first job washing tables at Burger King. Then he became the burger flipper, the cashier, and finally the head of drive-through. Tired of burgers, he switched to Taco Bell, where he improved his already near-fluent Spanish, and became the trainer of all new employees. Now he’s happily working at Walmart, and will soon be promoted to shift manager.He’s also pondering taking the Post-man Exam.

6 Years ago, Carl had his first girlfriend. She helped him improve his now fluent Spanish, teaching him words like “kiss” and “girlfriend”. They went to the movies and out to dinner and had a very giggly high school romance. Since then, he’s had two other ladyfriends, and is in pursuit of a fourth.

5 Years ago, Carl also graduated high school. He had a Regents diploma, and an 87 average. He graduated in the top 1/3 of his class.

4 Years Ago, Carl learned to drive a car. He learned in and then inherited my mom’s old Chevy Lumina, and when it finally gave out, he purchased, with his own money earned from several years of employment, a Ford Focus he picked out because it was good on gas and environment-friendly.

3 Years Ago, Carl got his Associates Degree from the State College.  After two years of hard work, he had defeated the odds and walked off so proud.

But today, June 30, 2009, Carl received his Bachelor of Arts in Business.  That’s right, my Alphabet-Soup brother has a BA to call his very own.

I wish we could track down those experts now. Show them how wrong they are, show them that nothing is impossible for Carl. Tell them that they have no right to deflate a mother’s dream for her child, because he will succeed against all odds.