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