Category Archives: emotions

Emotional Self Regulation and Autism

In autism there is so much work to be done by professionals, by parents and by those of us with autism. I myself struggle daily to do normal things. It isn’t easy to deal with an environment that is visually and auditorally stimulating to a painful level. So my work is on enduring the environmental challenges while appearing cool, calm and collected. The never ending challenge for someone with  a fragile sensory system is that ordinary activities may take extraordinary effort to navigate successfully. Getting oneself able to do this consistently is a big deal because living fully is the goal. Clearly  practice is how one’s tolerance for situations that are challenging improves, but this can be more than tough for parents who have to walk into a behavioral minefield again and again not knowing what will, or may, set off their kid because  outbursts may be consistent or not clearly consistent in cause.

Professionals guess quite often why a person who has autism is acting in a particular way. Guesswork is natural but it is not reliable. This is because the forces that are at play in autism are still not known. So, the guesses may help or they may make things much worse. Nevertheless, working on self regulation and tolerating a wide variety of settings is much more essential than many other goals in autism treatment.

Trying to Understand the Incomprehensible


I have been thinking about human beings and how mixed we are. In school I study world history. The subject has become hard to take since we began learning about World War I with the massive battles and senseless military blunders. Now we are studying World War II and the Holocaust. My mind is in shock. How are these events even possible? The more I hear, the more I fight the urge to run out of the room.
I think evil must exist in human nature, just as decency must, and we choose which is to be in our behavior. If the Nazis had the idea they were doing a good deed by killing children for being useless, they gained the freedom to rationalize their horrible behavior. My mind is incapable of understanding how one slaughters unarmed, innocent people, but I am autistic so maybe I don’t have the talent that neuro-typical people do to justify and rationalize the incomprehensible. I try to make it make sense. I cannot.
I realize, even now, that evil must be faced head on. We must work to treat others decently. I hope humanity will overcome our cruel nature one day.

Inspiring Man

Last week I had the opportunity to hear Nick Vujicic at an event for the Friendship Circle. If you don’t know who he is, Nick Vujicic is a man who has no limbs at all. He was born this way, but despite his challenges, he is freer inside than most people. I so relate to his struggles though mine have been different in many ways. Still, key challenges have been identical.
How do you find peace with faith? How do you accept the situation and stop the sorrow? How do you overcome limitations? How do you deal with other people who stare, or don’t know you’re normal inside?

It is more a decision to live fully than anything else. Nick had a tough time as a kid. So did I. He had to fight to get an education in school. So did I. With no limbs, independence is impossible. With severe autism, independence is impossible too. But he learned that the road to freedom is not in having no challenges, it is making the most of the reality life has dealt you. The life he got is harder than average, by loads, and he had to live bigger than  normal to just keep up. He is not ashamed, embarrassed, or hiding. He lets people get comfortable with him. That is a great gift.

I had a chance to meet him briefly. He has a cool wheelchair that is tall. It brings him to eye level, more or less. I gave him my book. It inspired me a lot to meet a man who bravely lives life fully, and does good, important work, even though he might have given up. Giving up is the easy way to run from pain but he decided that his life had a higher purpose. He is a role model to many people who despair over much less.

For me, it is a great reminder to count my blessings and to remember that challenges are meant to be overcome.

From My Speech at the Vista del Mar Autism Conference

My name is Ido.  I have autism and I can’t talk. But I can think. I have ideas and feelings and even a theory of mind. Why I have to say this is obvious. Many theories I have encountered teach that I have no ideas, feelings, or theory of mind. Until I could communicate I couldn’t correct people, but now I can. 
When I was 12 I decided to write about my symptoms, my education, and my life. I wrote for 4 years until I wrote a book about autism. It has just been published.
My book is like an autism diary. I tell my story. I write about my feelings. I teach the truth about my autism.
I decided a few years ago that experts had made a lot of mistakes that everyone just accepted as gospel. Not to offend anyone, but how does everyone know for sure? Hard to know absolutely if the people you are dealing with are silent and can’t write or gesture. 
My early life was extremely frustrating because I did not have a means to communicate. I listened to my experts day after day say that I had to keep working because I didn’t know nouns, verbs, pronouns, categories, emotions, my relative’s faces, and so on and so on.
But I did. I was just trapped in an uncooperative body. 
That is why my book is called Ido in Autismland: Climbing Out of Autism’s Silent Prison.
Autism has been like a prison, but I have helped myself to make it a prison breakout.
Now, you can see that I’m hardly normal as I stim, stare and move oddly. But, believe it or not, I go to a regular high school, and I go to only regular classes, and with the help of my aide, I am there from 7:50 to 3:00, and I intend to graduate on time with a diploma and make my future.
I have thought often how my life would have been had I never learned to type. Isolated. Lonely. Bored. 
I know that what I am saying may make some people squirm and some celebrate. I really hope to show a new path to understanding a baffling condition.
Me and my iPad and me and my letter board are my voice to breaking free. If you would like to learn my story, please consider reading Ido in Autismland.
I thank you for your attention and your willingness to be challenged by an outspoken, silent guy.

Cages

My autism is just like a cage. I can look out and see the free people, but I stay stuck inside. I think the lion that paces in its cage gets used to its routine and knows the bars don’t open, but the lion doesn’t realize that other lions roam freely over vast savannahs, and that food doesn’t magically appear from nowhere.
It is different for me because my cage is like an invisible barrier. Bars, not of steel, but of impulsive behavior, stims, and limited speech have the same result though. I watch the people move around me and I am stuck behind my barriers. 
I watched my sister celebrate her birthday with her best friends this weekend. I couldn’t joke, talk, or join in. I told myself not to get lost in the jealousy because I envied her social pleasures – not that I listened to my own advice. In that way I am unlike the lion because I know what I can’t do yet. People overlook me because I am odd, or because I don’t speak, but I still watch, wishing one day to be liberated from my cage that traps me inside my own body.

My Book

I started writing my book when I was twelve. I finished when I was fifteen. Now I am sixteen and it is close to publication. It has been a dream of mine for four years. When I started it I had no idea I would write a book. I was sad when I was twelve. I needed an outlet. I started attending regular school then. I was the only non-verbal autistic guy in any of my classes, except the autism room. I was adjusting to a surreal experience. On the one hand I was the only kid in my regular classes who didn’t speak. On the other hand, I was the only kid in the autism class who could type, so I felt unique and a bit alone wherever I was.
I saw a need to help people understand autism better. There were so many misconceptions. Inside I felt the urgency to help change things for my autistic classmates who saw me communicating daily but could only watch. No one thought to try to teach them too. I think I was regarded as unique, a “savant” for communication, and that what I did was irrelevant to them. Many days I wept in that year when I was twelve out of frustration for them.
When I wrote I started to think how I could change things. It was a relief to ventilate my loneliness or anger but that was not going to help them. I started to think about my symptoms. I realized that so many theories about autism are based on external observation by experts who interpret our behavior according to their theories.
My entire education up until I entered regular school was built on these external observations and theories. Lots of them were completely wrong. The real problem was that the non-verbal recipients of this education were too locked in to correct anyone. Not being able to speak, gesture, or write limits your ability to show your true capacity to learn.
So I decided that maybe I was an expert in non-verbal autism because I could explain symptoms from my own experience. The result was that my explanations were different from what my old teachers told my parents, and different from what the expert advice books told them too. My expertise didn’t come from a Masters degree in psychology or a class in Applied Behavior Analysis. It came from my own struggle living with autism since I was born. When I heard experts explain why I did things the way I did, before I could type, communicate, and tell them my opinion, all I could do was write my book mentally and hope one day I could communicate and tell my story.
My book is nearly here at last. Just a short time more and it will be available on amazon.com. It is my story but it is also a window into severe autism. I hope it offers a key to help other severely autistic people out of their prisons too.

Getting Back to Normal

Recently I had a challenging episode of autism at its most intense level. I can’t tell you how horrible it was to live in my body during that brief time, and horrible for people to be in my company too. I am sure I was helped by medication that stabilized my system. It is a lifesaver to have it, that’s for sure. It frightened me to have so little control over my emotional regulatory system, but I am getting back to normal. I have to make it up to the people who were near me then because I’m not happy I behaved the way I did. The consequence of this is that I have to try getting more self control during times of stress and change.

Forgiving My Neurons

How do I forgive my body? Stupidly it refuses my wishes time after time. My mind says, “Stop!” It has to go, hurtling into its own internal, impulsive deeds. What can I say? Autism is a really big challenge at times. It sometimes gets easier and I hope that is the trend, and then, out of nowhere, some new order is established. I must do what it says. My will is taken over by a body with its own mind.
I learned from hard experience that I have to fight it with all my might. I decided long ago that I would not be a slave to impulses that ruin my future, my present, and my happiness. However, I am not always sure or able to defeat the impulses. This makes me get really sad and start to hate my body, my neurons, and my trapped self. It is harder to fight impulses in a depression.
Now that I have moaned and whined, I must decide what to do. Can I give in or quit trying? Never. I must keep thinking that I will have the guts to keep on, even if it feels overwhelming. It is pointless to hate my body and neurons because I let them trap me in self rage. 
My body is not at fault. It is trapped too. My neurons aren’t at fault. They don’t hurt me on purpose. This is a crime with no criminals. I think I must let go of my frustration and anger. Wishing I wasn’t autistic may truly be the recipe for misery. My mind is free, my body strong, and my soul can fly.  If I let it go I can find peace inside. I must love my body as is. It is part of me, though I may not always feel that way, I will get no other. I may as well love it and get hope rather than hate it and get angry.
I think anger is only worthwhile if channeled to fix things. My anger was just a mass of resentment and fury. That is pointless and destructive. I am spiritual and I am sure God loves me as I am. If God can love me with autism then I can do no less.

Emotion Outbursts

The first week of school was both great and hard. I have to say I was glad to be out of my house, but the abrupt change from lazy summer to a full schedule of tough academic classes is hard for anyone, but is especially hard for people with issues changing their routine. My subjects are mostly new to me, as are my teachers (with one great exception), and my one-on-one aide is new too. Factor in a non-stop heat wave in sort of sauna-land all day and I get frazzled more easily than usual. 
  
 The teachers have been pretty cool because it is the first time they have had a student so disabled to learn about. I admit, if people are cool and calm with me it helps me if I’m stressed, but if people get stressed, I get frightened. I have a roller coaster internally that can’t stop when I feel fear. I must be given the space to center my neurological system.
 I so wish I was my full master of my emotions and behavior but I don’t have the tools yet. My parents or aide are indispensible in helping me modulate my behavior. They can right the tilting ship. They get it. Sometimes – rarely—I lose it, but usually I regain myself fast. If the situation escalates because I am not given a chance to calm myself, it is not helpful at all. Then my roller-coaster plummets. I keep wondering how do I stop it when I get impulsive or edgy at once. 
  
 I know I must be removed in quiet and allowed to pull myself together. I think many schools and parents should know this. A show of tough authority escalates a sensory system that needs peace. Take the kid to a quiet place to sit still and it should do the trick eventually. Running is also helpful. I regret it always if I lose my cool or misbehave in public but I urge people to not be frightened. Autistic non-verbal people don’t mean harm. It is usually a form of frustration they don’t contain well.

Thank You, Oscar Pistorius

I think Oscar Pistorius is an amazing man. He is the role-model of no self pity. it is remarkable how he ran in the Olympics, making to the semi-finals despite no legs. Though my autism is so difficult at times, I must remember that Oscar Pistorius shows me how to get on in life. I realize he is not impaired in speech or behavior like I am, but he faces skeptics, stares, and he keeps going. Sometimes being different is a burden, but Oscar Pistorius embraced his differences to run, win, and live fully. Wishing a heroic man well; thank you, Oscar Pistorius.