New Video of Philip Typing

This is a quick video I taped today to include in a talk I will be giving next month.  Enjoy!

Watching TV and Movies

From Philip's Classmate:

Dear Philip,

I have some questions to ask you.  First, what does your brain think about when you do things like watch TV, and if you understand movies, what is your favorite movie?  Second, how and when did you get diagnosed with autism?  Finally, is there a way you can climb over autism and speak your mind like neurotypical people?

From Philip:

When I watch TV, my brain often loses its peace. For me, the moving pictures and loud noise is too much for me to take in all at once. I practice watching TV by either looking out of the side of my eyes to limit the visual input or I just listen. I like movies because of the good stories. My favorite movie is Big Hero 6. I liked that the main character was smart. Lots of action too. I was diagnosed with autism when I was 2 and a half. People diagnosed me because I didn't talk. I can climb over the autism wall by talking by typing because my mouth can't talk. I can look more neurotypical by practicing being with you more.

Inclusion

Philip participating in the Stockade Pinewood Derby at church

Last month, a friend Philip met in the blogging world asked him his take on a question she had on a homework assignment.  Here was the question:

To what extent do you agree or disagree with integrating disabled people into our everyday life?

Philip’s answer:

I think it is so important to include every person in everyday life. Mean people want people like me to go away and not bother them. I am pleading with people to realize that autistics like me need support to join in. We desire to be part of normal life but people need to help us. Outside we appear mentally challenged. But we know our inner thoughts. We have dreams and goals. We have pain and suffering and fears. Many times people think not speaking means not thinking or feeling. When we are listened to and given accommodations to be heard, we can be included more as equals. I hope we will someday achieve full inclusion in society.  Life is better peacefully living with everyone in harmony and understanding.

Philip and sister Lia showing off their cars and trophies

Classmate Question on Learning to Communicate

A Classmate writes:

Hi Philip,

I just wanted to ask how you are taught or how you learn to speak sign language.  It seems hard to learn so I want to know how you learn it.  Also, how long did it take to learn what you know now?

Philip's response:

I do not know sign. I type my answers. My method of communication is Rapid Prompting Method. I learned when I was nine. I started by going to Austin, Texas to learn from Soma how to learn about lessons for kids my age. I was given lessons in math, science, history, and literature for the first time. My parents learned to teach me. I talked by pointing to letters on a letterboard to spell words. Later I learned to type. I still need an aide to help me stay focused and on task. This is because autism makes me captive to impulses. An aide helps me overcome my impulses so I can follow where my mind really wants to go. A lot of practice has gotten me far. I still have a long way to go.  People make my life better by politely helping me be peacefully included. I am always treated well at Heim. 

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."  

Autism Deserves Better (Especially in France)

By Laurence le Blet

My son Nicolas was born in 1999, 3 years after the law declared autism was no longer a psychiatric illness, but a disability.  But in France, we are still in the Middle Ages for autism.  Very few autistic kids go to school and many end up in psychiatric hospitals.  Parents, mostly mothers, have to stop working to take care of their children.  Poverty is added to the need to fight for each and every right.  Inclusion is a dream here.  To fight against institutions and even professionals to get the right help for your child is exhausting.

Nicolas started school at age 3 but I have pulled him out of school off and on to homeschool, due to the lack of open-minded schools here .  Presuming competence has always been my strength.  I have always known my boy was clever.  But the fact that he is nonverbal and has motor challenges makes people doubt his intelligence even now.  He started becoming interested in learning about the Holocaust at age 10 and people talk to him as if he is 2.  Knowledge about nonverbal autistics and their motor challenges is important in changing the way we educate these kids.  We must presume competence for inclusion.

A letterboard for communication

Laurence is the mother of Nicolas, age 15, who types to communicate.  She began teaching "Nico" to communicate with an Augmentative and Alternative Communication (AAC) device in 2007.  After reading about Soma and Tito, she created a laminated letterboard for spelling.  As her goal has always been independence for her son, she worked with Nico to type independently.  He is still very slow and has difficulty typing without someone near him, but he is improving.  He now does academic work on a laptop and communicates with an iPad mini with voice output.  He brings his iPad everywhere he goes so he can converse anywhere.  

* I would like to dedicate this to Aymeric, a nonverbal French boy who died recently after an epileptic seizure.  His mother fought for his inclusion very courageously.