The Internal Autismland

The frustration of having autism is matched sometimes by the frustration of the parents of an autistic person. It takes so much work, perseverance, and motivation to fight on the bad days or moments when Autismland swallows their child whole. My poor parents say it is remote and far away expressions I make in those times. How I annoy others when I’m in Autismland is a problem.

Choosing to stop or escape is not always possible. My parents or aide have different strategies to pull me back to reality. I exercise or think. They make me do one or both. It helps a lot forcing me to think when my brain is sliding into sensory heaven. It is a struggle between my senses and my mind. If no one helps, my senses usually will dominate when I’m in one of those moments.

Now, I realize I’m no picnic during one of those episodes. The horrible thing is I bug others then, but I don’t change in the way I want because I don’t have the control I need when these episodes occur. Other times I get easy control over myself. It may need lots of training, like sports and music skills. I notice jumping jacks help me reset my mind too. I think the difficulty is the intense OCD aspect. It is hard to resist sometimes. It is scary too to be at the mercy of stims or impulses but I am appreciative when people persevere in helping me regain control of myself and return to Normal-Land.

Understanding Autism

I correspond with a neuroscientist about autism. He asks me questions about things regarding autistic behavior to help explain what we think on the inside. I find many interpretations are incorrect but few experts ask me or people like me to explain. I guess it is hard because we often can’t communicate so they have to get information from doing trial and error or interviewing Asperger’s people. I feel both have led researchers astray.

Observations may show the result but miss the cause. Asperger’s is also a trial. It isn’t my trial, however. Recently I was interviewed by a filmmaker with Asperger’s. He was surprised at every answer I gave. This tells me that autism like mine and Asperger’s like his are fundamentally different in so many ways, and if researchers turn to people like him to explain the way people like me act they may interpret my behavior for his condition.

I am so grateful to be part of the solution now and to help researchers think differently about why we autistic non-verbal people act as we do. The worst frustration is to be misunderstood and I hope my book will shed light on what autism is for many of us.

Stims, Tics, and Freedom

I wish I could stop the majority of my stims. It is sort of weird to imagine my life without the stim in charge of my impulses. It is hard to explain what it feels like to people who have never stimmed, though perhaps you can imagine if you have tics or weird habits that are hard to stop. I see kids playing with their hair, gum, biting their nails. These are stim-like, though not as compelling, I’m sure. Stims are not conscious. They are relaxing, distracting, or invigorating depending on which one it is. Some are entertainment stims too.

The problem with stims us that they make me and other autistic people remote, detached, and hard to connect to. I think this is how stims are different than biting nails, for example, which is a habit. Biting nails isn’t a doorway into another realm, but stims are. It is the reason why I find it hard to eliminate them from my life.

They are compelling, tempting, and easily accessed. To resist is hard beyond imagining. I think I’d love to have just one stim free day to have a respite and see what life can be without stims in it. Would it be boring or flat, or just calmer? I don’t know. I guess I would quickly adjust to a new way if it was available, but it isn’t as of yet.

Hills in Seismic Country

I love hills and folded rows of land nestled in our valley. Seismic movements created this rippled landscape. I imagine the power of the seismic energy when I see these crumpled mounds of earth in the trails. It is clear a tremendous pressure has been quietly at work here, and looming is a big jolt one day too. The hills are innocently waiting to be disrupted again. They don't anticipate becoming taller or more crumpled so they have trees of oak on them, shrubs, and waving grass. Birds innocently hop in and out of the shrubs and the coyotes stand watching on the hilltops, hoping to get a rabbit or squirrel. The path is muddy from rain a week ago in the shady spots, and the sunny spots show dried horse hoof prints, mountain bike tire prints, and the sure proof that dogs have gone by, not to mention deer and owls too. The wind rushes through the canyons and my ears are overwhelmed so I walk with my hands on my ears when that happens. It is a tease because I know around the bend it will stop, the sun will be out, and the breeze will be quiet again. On the path I feel calm.

Onward Upward

Well, I am starting a new high school next semester. It is good to be free of my old school and entering a new one. I feel welcome and accepted. This is a wonderful change. Why some schools are friendly and others not is a subject good to explore another day. I am hopeful now that I can enjoy high school and that I will succeed there. Hope is great because I felt hopeless in my last school that I could enjoy it, be relaxed, and feel supported. It is a good lesson because some systems can’t be fought. The system is closed and you can’t change it. The only solution is to get out and even that wasn’t easy. It is a start to my new year in 2012 that I will go to a warmer and far more welcoming school. I will need to adjust to all new routines, classes, schedule, and environment, but I’m sure I will and I’m really looking forward to it.

Lizard Brain

Autism is a very frustrating disorder. I can be totally impulsive. I get foods I shouldn't take. I see it. I take it. No thought at all. I see things I want to spill or spray or touch. No thought at all. It is my lizard brain. It is almost reflexive. I think eventually, when I am caught. Then my reasoning is totally stung with remorse. I hate my impulsive actions.

I live in a dual world. On the one hand I have an intelligent mind and I think deeply. On the other hand, I only react to impulses, like a lizard chasing a cricket. Maybe neurologists or neuro-scientists can figure this one out. My whole life is extremes. I am intelligent but I am not able to speak or write like a teen. I can't even speak as well as a kindergartner. I am impulsive like a baby, but I am a religious thinker like an adult.

Autism is a wild ride. I think it is sort of a blessing to think deeply like I do, but it is so grating to follow my lizard brain as well. I wish I could figure out how to get mastery over it because people rightly get angry and I seem selfish.

Starting Over

I went to check out another high school today. They had Open House. I think many of you have read about how difficult my high school has been. It started rough, in part because I had an unprepared aide who was not ready to work with a grown kid. I am tall and strong, so I am not easy like a small elementary school kid. I was also overwhelmed by the size of the school and the number of students. It was incredible how many came out of the rooms when the bell rang. Finally, it was pretty clear to me the school was worried about my early behavior when I was overwhelmed. It was unfortunate because I did great in middle school. Not perfect, but better each year.

In high school I started improving steadily too but I think my less than stellar start has affected the ability of some folks to see my improvement. Still, I get excellent grades and I try very hard to excel. Now I have my old, trusty, terrific aide, Cathy, all year (yay), and a wonderful new aide in training for next year. I was at the end of my rope a month ago. I came home from school in a sort of panic. I pleaded to find me another school because I felt unwelcome. My mom began looking and found some possibilities but I wasn’t eligible for different reasons, usually residence issues. She found one possibility I visited today but we don’t know if I can transfer mid-year. Oh wow- it had a horse and goats and sheep, but it also had friendly people and a warm and welcoming administrator. Cross your fingers for me.

I decided to overlook the fact that I feel unwelcome now in my current school. This has helped me relax and I can see I feel calmer. It also helps me mature. This challenge of my high school made me grow and get tougher but I am still eager to move on to a smaller, warmer school.