Category Archives: autism

The Lure of Stims

Posted on October 16, 2011 | 6 comments

In the past I internally lived in stims. The stim was entertainment, escape, compulsion, and the easiest way to deal with the frustrations of autism. It is like an alcoholic who runs to a bottle whenever he is sad or tense. It is a way to avoid working on things. It really makes the situation worse though. It is also unfair to the rest of the people who interact with the stimming person because he puts his challenges on them. In my Health class we are learning about drug abuse and alcoholism. I can’t help but see a similarity in autistic stims.

In the first place, a stim is a sensory trip of enjoyable feelings. It may start small but it can take over your life- not so much life, but all you do is less important than the stim itself if it is compelling. So, it is an escapist drug and it is addictive. I used to stim a lot as a young boy, especially before I could communicate. Now I stim less because I am engaged in life at a normal level, so I stay in the world as much as I can. I am thrilled about that because I don’t want to live in Autismland flapping, tensing, and twirling my life away. It is hard but I am happy in school listening and learning. I may miss out on the social aspect of high school because I don’t have friends in high school- none of the disable kids really do, I’ve noticed- but I do have a normal day of regular classes and regular homework and exercise and so on.

But stims are there tempting me. I get stressed or bored so I return to my trusty alternative to reality. Stims are a necessary outlet at times but they have to be in moderation. If not we become drunk on them and it’s too hard to return to some self control. We need a lot of help in these times and lots of activity to keep our minds engaged.

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Posted in autism, self stimulatory behavior, stims

Electricity in Autismland

Posted on October 3, 2011 | Leave a comment

I noticed that I get really nervous before I give a speech. I suppose that’s normal but the truth is I felt so scared it kind of took over. I found old stims that were gone for years reappeared. My mom kept bringing this to my attention and kept saying, “Don’t bring back something you overcame just because you’re nervous.”

She is right. It is so easy to slip into bad habits. I bothered my mom and dad with remote, non-engaged laughter. They had to struggle to get me to focus. It was like a motor car rolling downhill with broken brakes. It was not pleasant for me either.

Autismland offers an escape from my stress, but it creates stress for everyone else. I’m overly stimmy if I’m nervous like over-charged electrical energy. How to deal with this is my life’s struggle. I did get it together for my big speech. I was calm the whole time, but leading up to it I was an electrical current that was out of whack. Really I feel much better now. It is very tiring to be stuck on a current of energy. I exercised and we walked. That helped, but it is like this: I will need help either from neuroscientists or electricians. Ha ha.

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Posted in anxiety, autism, overwhelming, sensory system

Touching the Void

Posted on September 26, 2011 | 1 comment

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.

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Posted in adversity, autism, motivation, strategies

Autism and Friendship

Posted on September 18, 2011 | 1 comment

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.

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Posted in "low-functioning" autism, autism, friends, social behavior

Letter to My Teachers

Posted on September 11, 2011 | 1 comment

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.

Sincerely,

Ido

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Posted in autism, mainstreaming, non-verbal autism, school

Autism in Disneyland

Posted on September 3, 2011 | 1 comment

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.

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Posted in anxiety, autism, Disneyland, overwhelming, sensory system

The Importance of Calm Assistance

Posted on August 27, 2011 | 1 comment

I can imagine I wasn’t the only freshman who was nervous starting high school. I could see they were also scared. I saw they were lost trying to find their way around, and lots of them were shorter than the older kids. Just like them I was nervous and had a hard time in school. I hope I am not sounding whiny when I say I can’t cover up my feelings in the same way most people do.

This week I watched the blind athlete, Erik Weihenmayer, compete on the adventure race TV program, Expedition Impossible. I wrote how his race was harder because he did it blind. His teammate, Ike, had a serious injury. His race was harder too. They came in second in spite of it. I never saw them stop in self pity or expect the race to be made easier for them. The victory was that they did so well. I would love to meet them. I think it is a triumph because Erik is showing people that being disabled doesn’t mean not living fully.

He is a lucky man because he met Jeff. Jeff is his climbing partner; his eyes in a way. I would love to have a guide like Jeff to help me in my challenges too. He is optimistic and positive and calm so everyone else stays optimistic, positive and calm- and motivated. I have had the pleasure of some terrific support in school. The reason I can accomplish the goals I have set is thanks to people like Cathy, Katie, and others. I see how their relaxed demeanor helps me. It’s important because I am nervous in school.

This year I had a nervous aide for five miserable days. She was not a relaxed woman at all. I saw how everything got her tense. I saw how small things became big things because she over-reacted to them. I saw how she made my mom worried and me panicky.

I think Erik needs calm, thinking Jeff to achieve his great accomplishments, like climbing Mt. Everest. Someone who leads with tension really hurts morale. I see it blocks thought too. It becomes about how they feel, not about working things through. I am sensitive to people’s state of mind. I think nervous energy is transferred one to the other. In autism we are all easily flustered, so a person working with autistic people needs to be a calm type.

Besides being a calm type, Jeff was also a leader because he got his team to work hard. No Limits was a sort of ambitious group. No one wanted to let his teammates down. So, I meander in my flow of thoughts and I reach this conclusion: Ike and Jeff respected and believed in Erik. They believed he could do it even though he was blind. They went on the adventure for joy, and the experience, not just to win. By their support of Erik, he was able to achieve amazing things. It didn’t seem to be a bother to Jeff. He did it in stride. He would advise, “Duck here”, “Rock on the right”, and so on. So Erik was calm and secure to the extent he could be.

As I said earlier, in high school all freshmen are anxious. The school is so big and intimidating. In autism we all have anxiety issues when it’s good, so when we are scared it is so much worse. If we are also being monitored by people with notepads, it is even more anxiety provoking. And if our support is not a relaxed person, guess what happens?

Helen Keller had a calm Annie Sullivan to support her endeavors. The people who assist the disabled must be a special type of person. I have mostly been lucky. I am eager to begin the next phase of my high school experience with a friend at my side helping me. Life’s journey is always filled with new lessons.

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Posted in adversity, aides, anxiety, autism, Erik Weihenmayer, Expedition Impossible, mainstreaming, school

Adjusting to High School

Posted on August 26, 2011 | 1 comment

I wrote a long blog essay yesterday, but I didn’t post it in the end. I guess it isn’t good to put all thoughts on the internet. It is a very public land on the internet. You can’t expect privacy, but it is a weird forum. I know my most internal thoughts will be read by strangers in places I have never been to. It is odd because you know me in a way, but I get few comments on the blog- I think it requires an account or something- so I get more comments on facebook. The feedback motivates me to keep trying because I hear from parents that I help them try with their autistic kids or that I give them hope.

I feel like I have to calm down inside. For many reasons adjusting to high school has been rough. It has been a huge change, and my first aide was not a good match for me. That didn’t help either, but it will be better next week. I like most of the teachers very much. I’m sure I will learn a lot. I love my English class. It is great. I enjoy Music History too. It is a hard adjustment but a wonderful opportunity.

I am sorry to say I lost it in school. It was so much pressure. I’m sorry I got so flustered. I see hope now. I believe now I’m on the road to being myself in school. I hope I can show my true potential. I’m trying hard.

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Posted in anxiety, autism, motivation

No Limits

Posted on August 18, 2011 | 2 comments

So, school has started. It is feeling a tad overwhelming. I try so hard to not lose my composure. It is a struggle all day. It’s interesting how it affects me. I have an overload of heat, crowded halls, and sitting still. I get so edgy in an instant. I try to control myself. It is a huge effort but I must do it if I want to achieve my dreams. Still, the struggle is hard. But isn’t life a struggle with some benefits of reprieve in between the challenges? It isn’t the other way around. We kid ourselves in imagining it is.

I watch a show called Expedition Impossible. It is a race competition in Morocco with teams of three trying to be the last team standing. One team gets eliminated each week. I see how hard they push themselves in high altitude, or in deserts, or in all kinds of different terrain. They have to mountain climb, repel cliffs, kayak rapids, ride camels, row and sail rafts, do puzzles, and overcome illness and fatigue. It is interesting in a way to see all the types of people in the race. Some are supportive and some are obnoxious, and some are weeping in overwhelmed self pity even though they chose the challenge. It is like me in high school. I chose it, so I must be the not-obnoxious or weepy one.

There is a team I will tell you about. It is a wonderful group of three athletes. One is blind. One is a US soldier who injured his leg severely on the trek. One is the eyes of the blind contestant. In a way he is the spirit of the group. He is so positive and they are all amazingly positive and determined and tough. The blind man, Erik Wiehenmayer, is incredible. He repels cliffs without sight, climbs rocky mountains, kayaks rapids, crosses a river on a zipline- all by verbal tips, and courage. He won’t let his disability stop him though his trek is harder than all the others. They all struggle too. He does it with no sight.

I see his decision to fight against limits. He won’t surrender to the easy way out. It is a good reminder to me too. I have a choice to be lazy or weak, but I will do the struggle. I too want a life not limited by my disability, so I guess I need to remember when I get overwhelmed or school is hard that my goal is my liberation from stagnation and more. I want to succeed as Erik shows me, in spite of autism and in spite of challenges.

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Posted in adversity, anxiety, autism, motivation, overwhelming, school, sensory system

Envy Sucks

Posted on August 13, 2011 | Leave a comment

“If I didn’t have autism…”is a phrase I realize is filled with turmoil. If ever I imagine my life as I wish it was I get so blue, so it’s better to focus on what is, not what it isn’t. I have moments when I envy my sister or cousins or friends. I wish I could socialize with ease like they do. I wish I could be trusted alone. I wish I could learn to do things I can’t, like sports or singing. I hope I don’t sound whiny, but I see what I wish all day and it hurts sometimes. Still, I will keep persevering because I am determined to not waste my life in negative envy. Autism is a challenge I will deal with.

Oscar Pistorius is a hero of mine. He runs at world class speed and he is trying to get into the 2012 Olympics, but the Olympic Committee is trying to keep him out because they say he has an advantage. The advantage is that he has no legs. Ha ha- what an advantage. They claim his prosthetics cheat, so he is struggling against a disability and stupidity, as we disabled people do daily. Still, he is a fighter and I admire his never taking the easy way. He could have sat around moping as a legless kid. Instead he put on prosthesis and played rugby and he ran.

So I guess he had his down moments too. I keep thinking how hard the fight is. I know I have to fight, so I won’t mope. I will see my work to the end, though I realize the end is always out of reach. It’s true my illness is a trial at times. I can’t wish it away any more than Oscar Pistorius can wish his legs back. The solution is to fight envy and deal with what is, not what might have been.

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Posted in autism, emotions, envy, motivation