Continuing the Dialogue: Questions from Classmates About Autism

During the month of April, Philip and I made a big effort to teach others about autism and clear up some misconceptions.  We showcased on the blog many writings from different Autistic people and their families from all around the world.  Philip wrote articles for Parents Magazine, Context with Lorna Dueck, and Disability in KidLit (click to see the articles).  Philip also had some of his articles and blog read in his homeroom and classes in which he has neurotypical classmates. Now there is dialogue back and forth as his classmates learn about him and ask him many great questions.  We are sharing on the blog to keep the momentum going from Autism Awareness Month.  -Lisa

Question from C in Philip's homeroom:

1) What is it like not being able to communicate with people?  2) What is it like having no control over your body?

Philip's responses:

1) I am better now that I can type. People who can't communicate are sad. I used to get angry mom could not make me talk. I made many imaginary friends. Not being able to talk is really frustrating. I think fast but my mouth can't say the words. I pass the time writing the thoughts in my mind. I am practicing what I would say. Peace came to me when I started to spell my thoughts. I am talking now (through typing) and it feels peaceful to know people can understand me.

2) Having little control of my body is maddening. I am always getting lost in outer space. I feel like there is no gravity. My body has little mass. I have to concentrate hard to move purposely and slowly. Even typing takes patience and precision. It is hard work for me.

Philip revised a previous blogpost about flapping and poor control over his body to give further insight on his movement and body control:

Flapping

I love to flap my hands.  I flap to feel my body in space. No one goes through the trouble I have to feel my body well.  Dare to feel each moment floating weightless in space.  I am light and my movement is erratic without gravity making my movement steady. Each day I go crazy not knowing how my body will act.  Most people have portly muscle mass to feel their own weight.  I do not.  I often feel like a bird about to take flight and it makes me flap. I love the sensation of my hands flapping. My hands flap when I am happy. They flap when I am momentarily stressed. They also flap to music. Flapping is important to me. I flap like a bird to feel free from my body. My body is naughty. It acts on impulse too much. No one can discipline it. It has a mind of its own.  It makes messes. It acts like a jerk. My body feels tension from stress.  Many times I can't feel my body. I am unable to do many things people do without thinking. Lastly, my weary lament for my Autistic friends who can’t communicate kills my soul.  Living with autism is hard. I sometimes would like to try living without it but I can't. Living peacefully requires me to accept myself, autism included. I mean to make the most of what I have been given.  I have been given a strong mind. I have a mission from God. I am trying to educate the world about autism. No meaning comes from being negative about autism. My slavery to negative stereotypes is over. I am free peacefully pursuing my dreams. Moments are still very challenging but I know I can persevere and someday peacefully make a beautiful life for myself.

"Today try to make our lives better by understanding us and accepting us as we are.  Include us in your lives.  Talk to us even if we don't respond.  We are listening.  

I am storing up happy memories with every person's kindness."  

An Awkward Problem

By Philip

I am dealing with awkward behaviors all the time. At school I sometimes pace when I should be sitting or I shout out when I should be quiet. People think i am doing it on purpose. I am not. I get caught momentarily mightily by an impulse. My body cannot stop itself. I momentarily lose control. People can plead with me to stop. I want to listen but at times my body won't obey. Ramming against a caring mind is my body. Going near loud noise hurts me literally. I am each day daring hard to fit in.  A tame mind can ease my day. Peace comes day to day from people who accept me at home, school, and church. Popular ideas about autism say we don't care about people.  This is not true. People intimidate me because I cannot talk or act normal. Peacefulness awakens when people understand me and like me.

Pacing is an annoying habit of mine.  I annoy others by walking away and not looking at them. I seem to be rude. People think I am ignoring them. I am listening always and can't concentrate on what you are saying unless I look away. There is no way to help my body stop except by making me sit. I also need to not be made to look at you when you talk to me. 

I shout out to release tension from fear, frustration, or stress. People hate when I yell. I mightily wail that I even hurt my own ears. I have lots more annoying behaviors like smelling people or stealing people’s food and drinks.  Lucky I have mom to put up with me.

Listen openly to me. Please be patient with people like me.  No matter the behavior, we want to be included. I long to be like my brother Carlos. I want to play soccer and be cool too. My goal is to be more courteous and less annoying.

(The following is a response to the question, “What is the difference between an impulse and stim?”)

Impulse is trying to reach for peace momentarily but it is opposite in potential. Peace never comes from acting on impulse. It only brings remorse. Unlike impulses, stims are necessary for living. Stims should be tolerated at times. One day you might learn to appreciate them. Ceasing to stim bodes poorly on my thinking. Lots of thinking happens as I pace, flap, or use another movement. I think stims are healthy but impulses are not. Help me by stopping impulses but allowing stims as long as they do not hurt anyone.

Flapping

By Philip

I love to flap my hands.  No one goes through the trouble I have to feel my body.  Dare to feel each moment floating in space.  I carry least weight and each day I go crazy not knowing how my body will act sometimes without my mind's control.  Most people have portly muscle mass to feel their own weight.  I do not.  I like to flap, daring to fly like a bird off a tree.  I flap to mean to fly away to freedom from my body.  Each day instead of carrying weight, I carry air.  It is damning.  It is hard to live so meaningfully.  I cannot do anything most people take for granted like I cannot talk, lip read (when asked to explain, wrote- I cannot make eye contact when people talk to me), I cannot each day very well act normal.  I need to flap so I can feel my placement in space.  If I don't, I place myself in hell.  I have killer fears of feeling weightless.  I feel like I might disappear.  I lie in peace momentarily when I am dealing with pillows of cotton.  I love blankets for this reason too.  I am insensitive to recreational behaviors like learning sports bc I cannot play like everyone else.  I dearly need to exercise.  I barely have strength in my muscles.  I even have no meaningful movement except my finger.  Each day I dearly need a sensory diet.  I have a goal of easing my ability to annoy others.  I am not trying to annoy others but it happens all day long.