Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part II

I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, hireasons thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 32 asks about what those with autism see first when they look at something.  Naoki reinforces what I have heard in many places, that those on the spectrum see the trees first, and then the forest; the details before the whole.  He also says they tend to “drown” in the particularly striking characteristics of those parts, and it tends to be harder to see anything else. If someone you love is on the spectrum, you will have, no doubt, experienced the attention to detail.  The Boy is always drawing my attention to some small part that I never would have noticed without his help.

Question 33 asks about appropriate clothing, and why this can be a struggle for those in the spectrum.  Naoki says they know and understand why we wear the things we wear, but that they “forget” what is appropriate, and how to make themselves more comfortable. He also explains that those who choose to wear the same thing each day (we have had our battles with this, for sure!) feel like their clothes are an “extension of our bodies,” and a guard against changing situations.

Question 34 asks about perception of time. Naoki says, “the fact that we can’t actually feel it makes us nervous,” and this makes perfect sense to me.  Timers help many on the spectrum have a sense of passing time, especially those that are visual in nature. And because the future is uncertain, it is a cause for a great deal of anxiety.  This is one of those answers in this book that just “clicked” for me, a true “A-ha!” moment.

Again, this book is a source of inspiration and wonder for me, and may be the closest I’ll ever get to reading The Boy’s own mind.  Not every person on the spectrum is the same, but these answers are food for a great deal of thought, and foster greater understanding and patience between me and my son.  I highly recommend this book.

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Book Club Discussion: The Reason I Jump, “Earthling and Autisman”

reasonI’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 22 asks, “Do you hate it when we make you do things?” Naoki explains that kids with autism often don’t know how to do things the same way as neurotypical people, no matter how many times they are shown how.  He explains that they understand that we don’t know if they are even listening or understanding, but that they still want to do their best, and they know when someone has given up on them.  “When we sense you’ve given up on us, it makes us feel miserable.  So please keep helping us, through to the end.”

Question 23 asks, “What’s the worst thing about having autism?”  Naoki says we can’t imagine how miserable kids with autism are.  An inability to communicate makes it that much harder.  He says, “We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”  I have found that people assume those with autism to lack empathy, but my theory is that people with autism actually have an overabundance of empathy, and that many of their behaviors are an attempt at trying not to feel so much.  When I have been able to point out The Boy’s effect on those who love him, he is usually much more able to control his behaviors.

Question 24 asks, “Would you like to be ‘normal’?” I know what I was hoping to hear.  Naoki says that when he was younger, he would have jumped at the chance to be normal, but not anymore.  He says that by striving to do your best, and that is how you achieve happiness.  He says, “For us, you see, having autism is normal – so we can’t know for sure what your ‘normal’ is even like.  But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”  Are you crying yet?  Such wise words from a young man.

I hope that you’ve gotten your hands on a copy of this book.  Even if it isn’t the experience of every single person with autism, it is the experience of one, and that’s worthwhile.

Book Club Discussion: The Reason I Jump, “Slip Sliding Away”

reasonI’m continuing the discussion here today because The Reason I Jump is an important book.  This young man has answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 11 asks about eye contact, and Naoki explains that focusing on the words that you are saying, the auditory input, causes his sense of sight to “sort of zone out”.  We’ve heard this before, and is probably the reason we turn down the radio when we’re concentrating on driving directions.  When we focus on sensory input from one sense, the others tend to drop in priority.

Question 14 asks, “Why do you ignore us when we’re talking to you?”  Naoki says that it relates to perspective, something I’ve learned in photography.  When you focus in something in the foreground, the background is not in focus, but when you focus on the background, the foreground is not in focus.  He says, “It’s very difficult for us to know someone’s there and that they’re talking to us, just by their voice.”  He says it would help a great deal if you could use a first name to get someone’s attention before speaking to them.  This is something that hadn’t occurred to me, but again, makes perfect sense.  If people with autism have a difficult time understanding social cues, voice inflection is a big part of that, and some other cue to begin the conversation is required, as Naoki suggests, possibly the use of the person’s name.

In response to Question 17, which is about rather an individual issue of waving goodbye backwards, with his palm facing himself, something that Naoki has done since he was a small child.  He says, “imitating movement is difficult for people with autism,” and to some extent I think he is right.  When The Boy and I were at his new-doctor appointment the other day, she asked him to bend over without bending his knees so she could check his spine, and he had a difficult time.  I bent over to show him what she meant, and he still had a difficult time.  We never did get it quite right, although the doctor was still able to do her check, but this does ring true for us.

I encourage you to read along with me.  No one book can give us all the answers, but this young boy’s determination to help us understand autism through his eyes should be rewarded with readers.

Book Club Discussion: The Reason I Jump, Questions 1-10

reasonHas anyone picked this book up yet?

It is a series of questions and answers that author, Naoki Higashida, who was 13 years old at the time of writing the book, addresses about what it’s like to have autism.  Naoki was (is?) mostly nonverbal, so his mother developed an alphabet chart, and he composes his thoughts by pointing to letters that spell words.  The entire book was written this way.  Question One in the book is “How are you writing these sentences?”, where he describes his process.

The thoughts that struck me were that using this rather low-tech process allowed him to “anchor” his words, words that might escape him if he tried to speak them.  Also, he reflects on the necessity of self-expression being the essence of truly being human.  What a compelling thought.

Question Three is “Why do you ask the same questions over and over?”  One of The Boy’s oldest friends does this almost incessantly, and The Boy himself likes to do this from time to time, so I was curious about this.  Naoki describes his thoughts as not being linear like those of a neuro-typical person, but more like balls in a ball pit, so that asking the same question over and over helps him arrive back to the memory of the answer the last time he heard it.  The next part of his answer resonated with me — Naoki said that it also allows him to “play with words”.  This is one of The Boy’s favorite things – he loves puns and jokes that have to do with words even homophones and homonyms.  Naoki said that asking repeated questions that he does know the answer to can be like “playing catch”, having fun “playing with sound and rhythm.”

Question Four was similar: “Why do you echo questions back at the asker?” and Naoki responded that doing so was a way of “sifting through memories to pick up clues about what the questioner is asking”, so that he can select the correct “memory picture” that answers the question.  In other words, it’s a processing technique, and it echoes the idea of people with autism thinking in pictures.

Responding to Question Seven, “Why do you speak in that peculiar way?”, Naoki describes it as a “gap” between what he’s thinking and saying because he can only access certain words at that time.  He goes on to say that he may sound strange when he’s reading aloud because he cannot imagine the story while reading it. This, THIS is why I still read to my son at age 11, and why comprehension is difficult but fluency is a breeze!!

The next few questions deal with conversation, and why it so difficult for people with autism to converse.  In Naoki’s case, he describes it as a “flood of words,” and words “escaping” when it is his turn to speak.  He also asks us not to “assume that every word we say is what we intended,” because sometimes the words that can be accessed are not the correct ones, but they come out anyway.  He explains a great lack of control, and anxiety about how he is perceived.  He ends this section by asking, “Can you imagine how your life would be if you couldn’t talk?” and what I think he means is that not having the control of your own brain and body to make yourself understood is extremely isolating and frustrating.

What are your thoughts on this section of the book?  Were there any revelations for you?  Please share below.  I can’t wait to hear what you think!

Book Club: The Reason I Jump

I watched a Daily Show clip this week, and almost immediately ordered the book being discussed.  In fact, I paused the clip about 15 seconds in to do so.  I’ve mentioned before that I’m not a big reader about autism.  I live it, so I don’t necessarily need to read about someone else’s trials and tribulations.  That may seem glib, but there’s a limit, you know?

reasonAnyway, something in this interview, and perhaps it was that I respect Jon Stewart so much for what he has done for raising funds for autism, or the fact that the author being interviewed (David Mitchell, who didn’t write the book, but made it happen) also has a son with autism, but whatever it was, this book seemed compelling.

I think all of us with children on the spectrum would give our own various body parts just to know what our children are thinking, what is going on in that brain of theirs…

And this book was written by a 13 year old Japanese boy with autism, Naoki Higashida, about autism, and about what it is like to be on the spectrum.

I’ve ordered my copy, and will post some book-clubby type posts on my facebook page coming up if you are interested.  They’ll start Wednesday, October 7th – does that give you enough time to get a copy and start reading?  I hope so.  I can’t wait to start reading!