Thursday, May 08, 2014

The Reason I Jump, Naoki Higashida

For the first 20 years of my teaching career, I taught self-contained special education.  I chose special education as a career for two reasons.  The first was the book A Circle of Children, by Mary McCracken.  It is a memoir of McCracken's time teaching in a school for children with severe social/emotional disabilities. The second reason was my experiences volunteering at a day camp for children with special needs in the south suburbs of Chicago as a teen.  Not only was I fascinated by the puzzle that these children presented to educators, I was deeply moved watching them grow from year to year, and I knew that I wanted to be a part of that process.

During those years, I met and worked with many, many children.  Quite a few were diagnosed with autism, both the more stereotypical "hand-flapping, spinning-objects" kind, and the varied forms that we have come to recognize today as part of a spectrum of symptoms.  Some of the children were non-verbal, some of them talked non-stop, though usually only about whatever obsession they were currently stuck in.  I learned all about the difference between asphalt and concrete from Keeler, and more about Uh Gi Oh than I would ever need to know from Nick.  Kameron mostly just repeated what other people said to him (called echolalia), but when he did verbalize his own thoughts they almost always had to do with basketball.  I knew children with autism who didn't like to be touched at all, and some who wanted nothing more than deep pressure all the time.  I knew children with autism who never demonstrated self-stimulation, and some who would bounce on their toes or flap their hands non-stop without intervention.  And no matter which child I was currently working with, I always, always wondered what they were thinking about.  Were they content to be left alone?  What made them suddenly take off running?  Why did they insist on wearing the same clothes, day in and day out, regardless of the weather?  Why could they echo whatever was said to them, but not tell us their own thoughts and dreams.

We know so much more about autism than we ever have before.  We know that the issues people with autism have with touch and sound and light has to do with differences in their sensory integration.  We know that people with autism can exhibit different behaviors based on where they fall on the spectrum, and that some disorders that we called something else previously are in fact related to autism spectrum disorder.  But there are also still lots of mysteries.  No one knows the cause of autism (but we know it is NOT childhood vaccines, in case you've heard that in the media).  No one is entirely sure why the repetitive and obsessive behaviors exhibited by many people with autism are so comforting to them, nor do we know why not every person with autism has these behaviors.  But we may now have a better idea about what people with autism may be thinking about, thanks for a remarkable 13 year old Japanese boy.  Naoki Higashida shares his thoughts and experiences as a person with autism, and takes some guesses about how things may be with others who have autism, in his bookThe Reasons I Jump.  He gives us insight into the internal life of people with autism in a way that I have never seen before.

 There are many noteworthy things about this book.  It has an interesting format, in that Higashida starts each section with a question that neurotypical may ask about autism (and probably have asked), and then proceeds to answer the questions according to his own experience.  The book is also interspersed with short stories that demonstrate some aspect  of Higishida's inner life.  But the thing that makes this book truly amazing is the fact that Higishida is non-verbal. He can speak, but the process is so difficult for him that he uses a communication grid he devised himself, or a computer, to write what he wants to say.  Without those adaptions, he would most certainly be trapped inside his own head, unable to communicate at all.  No one would ever have had access to his insight into living with autism, and that would be a tragedy.


Essentially, his message is one that I think probably resonates with anyone who has a physical or mental illness.  Have compassion, have patience, and have understanding, because people with autism or other disabilities don't have control over that disability.  He acknowledges over and over that he knows it can be taxing and frustrating to take care of people with autism.  He knows that having to say the same things over and over again, only to have the person with autism forget what they were told is difficult.  He knows that it worries his parents when he suddenly runs away from them, or when he doesn't notice the world around him and its many possible dangers.  But he tries, and he wants to be recognized as a person with needs, a person who does not always live up to his own expectations for himself, but who is honestly, truly trying to understand how to live in a neurotypical world.    He also reveals a deep sense of self-awareness and insight that I think many people working with people on the autism spectrum would find unbelievable.  Some people living with autism are so distant emotionally and cognitively from the world us neurotypicals live in that it is hard to believe that are thinking about much of anything at all.  How many times have I heard the words, "He's in his own world" used to describe someone with autism?  I've thought it myself often enough over the years.  And for some people with autism it may be true that their experience of the world are so different than mine that it really is like another world, but I suspect more often people with autism are looking for the same things all of us are-safety, comfort, and meaningful human connection.


2 comments:

  1. The message is an excellent one. It can't be stressed enough. I found your link on Beth Hoffmans blog and stopped in to say hello.

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    Replies
    1. Welcome! Glad you found me! I found Higashida's insight and experiences very moving, and I am so glad that he shared his thoughts with the world!

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