Monthly Archives: September 2011

Touching the Void

I watched an amazing movie yesterday called Touching the Void. It’s not a new movie but it is new for me. It tells the true, incredible, epic, survival story of a climber named Joe Simpson in the mountains of Peru. He injures his leg terribly. It is a break that makes his leg unusable. The weather turns bad and he and his partner are exposed on soft snow they can’t hang onto. The snow blocks their vision and the partner accidentally lowers Simpson over a ledge. He is hanging in the air pulling his partner off too. The partner decides to cut the line. Simpson falls into a deep crevasse.

From there I can only tell you he endures super-human challenges. I watched how he did it. First, he focused on what to do, not on how he felt. If he panicked, he re-focused on his task rapidly. He had no one but himself to rely on, but he was thinking constantly, not in self-pity but on how to keep moving forward. One strategy he had was to make small goals that he had to achieve by a certain time. Once he reached his goal he immediately made a new one. This kept him moving forward all the time, but with small goals he could achieve, rather than a seemingly impossible huge goal. In this way, inch by inch, he crawled off a mountain to life.

I couldn’t help reflect on autism when I saw this. Working out of a neurological illness is kind of like being in a crevasse. I see that small, steady goals, an absence of self-pity, and focusing on thought, not emotions, works on that too. Simpson may have survived by true grit but it’s a lesson I can learn from.

My Friend in Middle School

I was thinking about my friend who is autistic and starting middle school. He is a smart guy but he isn’t educated in a scholastic sense because he was kept for years in an autism classroom. Now in middle school he is starting to go to a regular class for one period. He is overwhelmed and scared and being watched. It is hard to be scared and overwhelmed and scrutinized. In his case he suffers more because he can’t communicate with his one-on-one. It’s a struggle to do the work if you can’t communicate and you’ve never sat through a regular class before.

But in spite of this, he is smart and he deserves a chance to learn. He isn’t learning anything in his autism class. I mean, if you couldn’t talk and I stuck you in a pre-school class year after year, how would you like it? It’s not a matter of he needs to be normal before he can start to be taught, because he will wait forever. He needs to learn how to learn. No one showed him this lecture format before. Imagine moving from toddler class to middle school with no preparation. Then the school is inferring that he really isn’t ready.

It was my experience too, and to some extent, it still is. I am over the days of proving I am smart, but not over the days of scrutiny. To be autistic means you have to prove yourself over and over. I sometimes imagine how my scrutinizers would like me scrutinizing them. I think we who work to emerge from autism need to get a little more empathy and a lot less judgments. The disabled can do a lot but we fight not only our disability, we fight prejudice, of sorts. I accept it. I’m used to it, but it’s new for this boy. I wish him and his wonderful mom strength and perseverance.

Autism and Friendship

In friendship there is give and take, easy talk, shared interests, and socializing. I see the way my sister is with her friends. I can’t do what they do. I’m not referring to girl stuff. I mean the social stuff they do.; talking on the phone, sports, texting, meeting at each other’s homes, malls, and all the rest. How is an autistic person who is not verbal, limited in initiation, independence, and the rest, going to do that? We have an isolating illness. It stops us from doing the normal social things and it makes people want to avoid us too because we are so different and so hard to engage.

I have a few suggestions for how to be a friend to an autistic person.

-Don’t patronize, even if the person seems “low-functioning”. Who knows what is trapped inside?

-Stay friendly and say “hi” even if the autistic person is not animated in expression or doesn’t say “hi” first.

-Try to imagine what non-verbal messages the person is communicating in behavior.

-Help them stop if they get too stimmy.

-Connect in the ways you can.

I see some people are able to reach through the barrier with autistic people. They are energetic, friendly, not putting up with aggressive or bad behavior, positive and calm. The worst traits for an autistic person to be around are the opposite; lazy, grumpy, weak and afraid to set limits, negative and tense. I mean, who likes being with negative, grumpy people? But in autism we get so affected by the moods of others. I think friendship is different in autism. I am friends with people without socializing in the normal way, but I hope one day my skills will improve.

Letter to My Teachers

Dear Teachers;

I started High School with several big challenges. The challenges are why I am easily the most different kid you have in your classes. I have a serious neurological difference. Recently a neuroscientist I know told me that it is theorized that autistic people have a surplus of neurons. Our brains don’t prune properly. The result is a communication interference between thought and action. This is why I don’t speak with my mouth or why my writing is messy. It is also why I am impulsive or emotional with poor brakes. It is awful for me to sometimes be the follower of my actions. I am struggling daily to master them.

The second challenge is attacks of anxiety. In autism we often are anxious, nervous, and worried. That’s when things are good. In real stress we sometimes are overwhelmed. Starting High School was really overwhelming and I lost my self-control. I am trying so hard to do well and I hope you see I am improving. I regret any disruption I caused and I will try to be a more relaxed student in the future.

One additional stress was that I was not with the right aide at the start of the school year. I think I need to work on finding good matches who help me stay calm. I have this now with Cathy. I did not have that before so I became stressed and even frightened.

I want you all to know that my education is a thing I value very much. It is challenging to be the only autistic kid like me in school. I know other students have autism but they are verbal or with less severe symptoms. Now I struggle to show that people like me can be educated too. I think the vast majority of people with my degree of autism have only a simple and very basic education of alphabet, arithmetic, and not much more. It was my good fortune that I was able to learn to communicate on letter board or computer with my one finger. Thanks to that, my education is possible. It liberated me from total isolation.

I know you are all busy and I appreciate you welcoming me to your classes. I realize you may get worried about whether I do my own work. I do all the thinking work but I don’t do the hand-writing. I invite you to watch me on my letter board and see for yourself how it is done. I have had several teachers do this. It is helpful to see I work on my own assignments, moving my own arm, and not being manipulated. I would be happy to show you any time you wish to observe.



Professional Guessing

I read this story in the Wall Street Journal.
and it probably describes feelings that other parents can relate to. The boy has very different symptoms from me so of course his story is different too, but I see how hard parents work on dealing with behaviors they don’t understand. I see how they seek answers from experts.

The part of the article I want to comment on is what the autism specialist told the father about his son. The insight the father received is interesting. He is told that his son perceives the world in fragments. In my opinion, the expert is giving an insight based on conjecture. How is she able to determine that the boy is perceiving reality in fragments? I don’t perceive in fragments, though my sensory system isn’t normal. I think autism has a lot of experts who guess a lot.

I am thinking that maybe I don’t have a title, but I am an expert in autism. I could tell the expert the struggle of autism from my own experience. I didn’t read textbooks in autism to help me tell others what autism is. I live autism. I see the world in autistic eyes. I have had so many theories all my life that severely impacted my life. I would say that many were totally fantasy.
I hope soon I can publish my book and tell about autism from the inside out.

Autism in Disneyland

The whole world goes to Disneyland. It is an imaginative talent, to be sure. It is sort of like travel into space, or time, or into a cartoon, in between the crowds and the long lines. The last time I was there I was so sensory overwhelmed I had a feeling of real fear. I saw dark tunnels in the lines, darkness in the rides with sudden bright colors bursting out. In the really kiddy-oriented ride, Winnie-the-Pooh, I was so bombarded by bright colors in the darkness, I almost panicked. I had to control myself from fleeing.

The Pirates of the Caribbean is so dimly lit I couldn’t bring myself to even get into the boat. I know the people I was with were disappointed, but I couldn’t do it then. I wish I could because I rode it when I was little and it is a cool experience of animation in moving figures.

My favorite ride is the Jungle Cruise. It is mellow in a visual sense because it is naturalistic. I enjoy pretending I’m on a safari.

I also love the Autopia because I can pretend I’m driving even though it is easily the loudest environment imaginable. I need my headphones all day in Disneyland.
I like Tom Sawyer Island too. It is fun but my sensory system is always stopping me from doing things. I can run on the paths, bridges, and so on, but I balk at entering the caves. My mind knows they are safe. My system says, “No, no, no.”

Somehow I did the Indiana Jones ride. I can’t believe I did, in retrospect. It is dark, scary and fast- all things my system hates, but it was really exciting and I was entertained by it. It was not in bright colors so my visual field could cope. I would do it again, believe it or not.

The roller coasters scare me so much. I have the fear of flying out so I can’t ride the Matterhorn or Big Thunder Railroad. I know I won’t fly out, but I feel almost panicky even thinking about these rides.

It’s a Small World is a really terrible ordeal. The colors, lights and incessant song drive me bonkers.

The Haunted Mansion is creepy. I can do it though. It is not dark in the beginning so I can go in. Once it’s underway I am fine and it is super creative and well done.

I think I shouldn’t go to Amusement Parks because money is wasted on me. I want to do rides I can’t get myself on. I hate crowds of people and noise. I think I need the beach or trails to relax. My sister is a huge fan of Disneyland and went this week. I remember my last trip there vividly. It was so hot, crowded and noisy. I tried to cope but I struggled to enjoy myself. The conclusion I had is I can’t go if it is crowded or hot.

I know some autistic kids who love the sensory high of Disneyland. They go on roller-coasters over and over. They have sort of a drug-experience on some of the rides. In my case it is not a stream of sensory pleasure, it is an assault on my overly sensitive system. It is an amazingly creative place, but on a scale of one to ten it is an eleven in terms of sensory challenges. To give you a hint of my experience, imagine all the rides at deafening volume, the colors at dizzying intensity, the dark shadows ominously terrifying, the heat oppressively scorching, and the sea of humanity incessant. Well, that was my last trip there two years ago. Disneyland is a test of autism endurance, but it is a cool place in any event.