Autism is My Home

By Tito Rajarshi Mukhopadhyay

Autism is my home.

And it is on the other side of the road. I have been living here and it is far more familiar to me.

On one side of that road, that is your side - you see pink or purple flowers and feel the hot or cold wind; you see the details of looks of people - a frown or a friend in that face.

On this side of the road there is a loud or low whispering from a shimmering grass blade under the song of a sun; wind in its pink or purple blush painting your face while you are trying to figure out whose face is speaking to you through the details of pink and purple.

You do not bother the details of the face. Face is just the background.

If the wind feels beautiful the face is a friend.

There is either looking at the sunny side or hearing the sunshine as a song depending on which side you are destined to live - your side or my side. Do you see it or do you hear it? You may not even have the choice to choose.

You are welcome to my home. I always felt welcome in yours.

What difference does it make where we live if we can both use the road together?

-

Tito

Tito is originally from India and now lives in Austin, TX.  He was diagnosed with severe non-verbal autism at age 3.  Tito communicates through handwriting and typing. He learned to develop his reading, writing, communication, and thinking abilities through the educational method created by his mother Soma.  This method, now known as Rapid Prompting Method (RPM) is now being practiced by people all over the world to learn and communicate.  Tito is an accomplished author and poet, having written several books including Mind Tree and How Can I Talk If My Lips Don't Move.

Tito in Buffalo, NY for an RPM Workshop

Studying Autism

I have been reading Philip the book Understanding Autism through Rapid Prompting Method (RPM) by Soma Mukhopadhyay who first developed the method to help her own autistic son Tito.  In the prologue Soma writes, “Martin Luther King Jr. once dreamed of a world where his children would ‘not be judged by the color of their skin but by the content of their character.’  My dream is that individuals with autism should also be judged by the content of their character, not by their diagnostic label, nor by the unusual behaviors that often cause them to be segregated from typical society.  Our challenge is to give them the exposure of education and ability to communicate so that their character can be revealed and held up as worthy.” (p. 1)  This book, Soma’s first,  is dedicated to the “why” of RPM.  It explains the neuroscience behind autism and the adaptation process that comes about from an altered development of the brain and sensory system.  It has been quite a learning experience for both me and Philip to go through the book together.  For Philip, understanding his neurology better is helping him to understand why certain things are hard for him and how he can make adjustments to adapt better to situations that are difficult.  In the same way, understanding Philip gives me the tools to adjust my expectations and help Philip better.      

This morning, I asked Philip what he wanted to do today.  Instead of choosing an outing this time, he spelled, “I WANT TO BLOG.  I AM COUNTING ON HEARING MORE OF SOMA’S BOOK.”

In the previous chapters of Soma’s book Philip learned about the stages of cognitive development in normal versus autistic individuals, altered sensory development in autism, and adaptive behaviors in autistic individuals.  Today I read Philip chapter 6 which was in a Q&A format discussing common behaviors in autism and what might be the reason behind them.  I presented the questions from the book and Philip gave me his own insight.  We got through half of the chapter.  This is the discussion which transpired.

(Reading from book) Why is Sam staring only at the corner of the room?

I am blocking out sights from becoming too intense. I look out the side of my eyes to concentrate on detail and not get distracted.

Why couldn’t Sam bring me the book when I asked him to?

I am each day attending to so many things all at once.  I have a hard time focusing on what I am supposed to do.  I am each time trying to heed to my task at hand.  I sometimes get distracted.  

Why does Sam get upset about the window blinds being turned in a different direction?

I like attending to new things.  Each day each new interesting thing is mean to my senses.  I am anxious at first but I want to have fun too.  I am interested in a lively life.  Each day it is good to do more new things.  I am getting better at this.

If Sam has developed alternative means to adjust to the environment, what can be done to make the best use of it?

I think education is so important.  It helps me understand the normal world.  It helps me not think of my own world as much.  My own world is good for nothing.  I stim away my life there.  In Autismland you are alone all the time.  I am glad I am not there anymore.

*This entry is dedicated to Cindi and her teacher Lenae whose blog Cindi's Blog inspired us to also study from Soma's book.  Cindi is 12 and non-verbal and has been wanting to study the differences between autistic and normal minds.  She is seeking input on her blog from ALL people, neurotypical and autistic.  Philip has left his comment.  Please help her out by visiting her research page and commenting. 

 Philip, age 4, at Everglades Elementary TEACCH program in Miami

Stories That Matter Most

I am looking forward to receiving a new book in the mail soon called The Reason I Jump by Naoki Higashida.  A fascinating excerpt from the book can be read in Parade magazine here.  I first learned of Higashida from the wonderful film Wretches and Jabberers.  You can see the trailer here.  The Reason I Jump was written by a Japanese autistic boy when he was 13.  It has only recently been translated to Engilsh by KA Yoshida and David Mitchell, a husband and wife with an autistic son of their own (Higashida is now in his 20s).  According to early reviews, this book was eloquently and painstakingly written letter by letter on a letterboard, much like the one Philip uses.  (Higashida now types and can even read back verbally what he has written).  The book answers 50 questions about autism such as "why do you jump?" and explodes common views about autism, such as autistics are not interested in people, they do not understand feelings, and they are lost in their own world.  Society has come up with a misguided view of autism largely based on fictional accounts like Rain Man and from the medical establishment (DSM criteria).  It has been hard to get a first-hand account of what autism is like because of the communication problems caused by neurology.  However, in recent years I have started to see non-verbal autistic voices more and more.  The book Ido in Autismland is my favorite to date.  Ido got his start with Soma and has written a collection of essays that deeply resonate with what I believe Philip experiences similarly.  Tito Mukhopadhyay has also written about his life and his perceptions through beautiful poetry.  These autistic voices (who speak through the written language rather than spoken) have shattered my preconceived notions of what autism is. 

Of course now I have my own son to tell me what autism is like.  Philip is only 10 and has been communicating just a short time, so he is not yet as eloquent as Ido, Tito, or Naoki.  But even so, he has been amazing me with his story.  The more I discover who Philip is, the more I realize how wrong my perceptions of him were in the past.

Philip actually wants to talk about autism.  A couple days ago, I was ready to teach Philip a lesson from Brain Pop.  I asked him what animal he would like to learn about.  Instead of choosing, Philip became upset and started to cry and hit his head.  I didn’t know why.  After awhile he calmed down and I asked, “Why were you upset?”  He answered, “I KEEP SAYING I NEED TO TALK ABOUT MY AUTISM.”

So we started the conversation, which also lead me to the idea of having Philip co-blog with me. 

 

Lisa (me): What do you want to talk about?

P: STIMS

L: What can you tell me about stims?

P: A LOT OF STIMS ARE NEEDED TO CONTROL THE AKING (aching).  OFTEN I AM NEEDING STRESS RELIEF.

L: What kind of stress do you have?

P: STRESS CAUSED BY EVERY SOUND.

L: What else can you tell me about stims?

P: A LOT OF STIMS ARE TIME CONSUMING.  I LIKE TO KILL TIME BY WALKING AND THINKING.

L: What do you think about?

P: I THINK ABOUT ANYTHING

L: What are some things you think about?

P: AS YOU ASK I AM EYEING A HAPPY FUTURE.

L: What do you see in your future?

P: I AM TALKING

L: How?  With your voice?  Typing?

P: WITH A PERSON HELPING

Today I also shed tears about a discovery I made about Philip’s ability to use his hands.  In my dining room I have 2 paintings made by Philip when he was just 2 and a half.  I am so glad my mom saved them because at one time his paintings became so numerous I used to throw them away.  I finally had two of them framed when we moved to Buffalo 4 years ago.  They look like paintings of the sky at different times of the day.  Philip also used to color and could draw a face.  For some reason we saw those skills vanish in time to where to this day he cannot even draw a straight line.

Ana and I talked to Philip and Ana asked, “Do you remember when you used to paint and draw?”  Philip replied, “Y.”  “Why don’t you do that anymore?” Ana asked.

P: AT THE TIME I STILL COULD HOLD A PENCIL.

A: What happened?

P: I CAN’T CONTROL EYE AND HAND ANYMORE.

Autism is such a mysterious condition.  I think there is still so much to discover in the future.  Perhaps whole paradigm shifts of viewing it and treating it will come about from all these autistic voices speaking out.  It is a good thing.  Their stories matter most.  Philip reminds me that even though he deals with such hardships, he has his eyes open to a happy future.

 Philip's paintings at 2 and a half years old

 Drawing at age 2