Jim, the Boy with Autism

I recently finished the book “The Reason I Jump” by Naoki Higashida. It’s a translated-to-English memoir written by a 13-year-old Japanese boy with autism.

I think it’s one of the few (if only) books written that gives a first-hand account of being autistic. I really recommend it.

It made me think of something.

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Growing up I was very active in church. I was a consistent and visible member of my church’s youth group, which was the community for middle/high school kids. And towards the latter years of my time there I became aware of the presence of Jim [1]. He was the autistic kid.

Not that I knew what that meant in any real sense. Autism fell within the ambiguous umbrella of “mentally handicapped,” indicating that I didn’t really know what was going on with him but he was developmentally different in some way. I had enough life experience/good parenting at the time not to treat him differently, but that was helped by the fact that our paths didn’t cross very often. He was several years younger than me anyway.

Jim had functional autism in the sense that he could generally do anything we did. He could go to our events, he could participate, and he was even on his high school track team. He was a better swimmer than I was (and still am). But he still needed a buddy – someone to go with him to the bathroom, help him through the food line, etc. – and couldn’t be left on his own for an extended time.

A large part of Jim’s inclusion was a result of the efforts of his mother, which was visible to even a generally apathetic high school senior like myself. She totally, unconditionally loved him. She initially sat with him in services to make sure he didn’t have meltdowns, slowly weaning herself away until he felt comfortable sitting by himself. She sat with him during Sunday School, taking him out of the classroom if he indicated he wanted to leave. She came to sleep-away retreats to make sure he could participate in all the things the rest of us did. While it was weird to have an adult there at times, we understood.

Until we got used to him Jim did a lot of things that weirded us out. He’d jump around and clap a lot, in a very excited manner, often during loud music. He didn’t speak unless spoken to (generally with a “yes” or “no” answer) and often mumbled to himself rather than pay attention to what was going on. But we got used to it. He was Jim. It was whatever.

I think the times when Jim’s “different-ness” became most stark was when we joined with other youth groups for events. Jim would yell out at an inappropriate time and the less familiar kids would laugh, point and whisper. Not necessarily because they were mean spirited but because they were kids. Over time more exposure to Jim bred more tolerance from us.

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After I left for college I remained a volunteer for the youth group I left behind. I’d come back during summers and participate as a counselor on those sleep-away retreats, acting as if a year or two of college had suddenly bestowed upon me the requisite wisdom and knowledge to lead younger kids. There were some changes at the top while I was away and soon I was introduced to the new youth group pastor, a guy named Pastor Bob [2].

Pastor Bob was this large, imposing man. He spoke loudly and with supreme confidence. He expected to receive authority and got it. There were rumors that his past included an MBA from a top California business school and experience leading successful businesses [3]. While nobody could actually verify these supposed business credentials, we had little reason to think they were false. If anything his personality was an implicit validation of their accuracy.

I was away at school for the bulk of his tenure but the first time I visited I was shocked at the changes. Boys were wearing suits on Sundays. Attendance was booming and kids were participating in unprecedented numbers. Pastor Bob had made a visible effect on youth and even parental engagement and all signs pointed up. The kids were happy, the parents were happy, and the church leaders were happy.

A year later things were different.

I had been away at school for a while and when I returned the changes were even more alarming than before. It seemed as if youth group sentiments had regressed to unprecedented lows. I heard stories of leadership power struggles and bullying. I heard stories of questionable monetary spending and the sudden proliferation of new iPods as a means of “encouraging” students to participate in events. I heard stories of sexism and condescension, favoritism and alienation. All within a high school community.

Pastor Bob, with his dominating, aggressive, unyielding personality, turned out to be exactly the opposite of what these kids needed [4].

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##What’s the reason you jump?##

What do you think I’m feeling when I’m jumping up and down clapping my hands? I bet you think I’m not really feeling anything much beyond the manic glee all over my face.

But when I’m jumping, it’s as if my feelings are going upward to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I’m jumping, I can feel my body parts really well, too—my bounding legs and my clapping hands—and that makes me feel so, so good.

So that’s one reason why I jump, and recently I’ve noticed another reason. People with autism react physically to feelings of happiness and sadness. So when something happens that affects me emotionally, my body seizes up as if struck by lightning.

“Seizing up” doesn’t mean that my muscles literally get stiff and immobile—rather, it means that I’m not free to move the way I want. So by jumping up and down, it’s as if I’m shaking loose the ropes that are tying up my body. When I jump, I feel lighter, and I think the reason my body is drawn skyward is that the motion makes me want to change into a bird and fly off to some faraway place.

But constrained both by ourselves and by the people around us, all we can do is tweet-tweet, flap our wings and hop around in a cage. Ah, if only I could just flap my wings and soar away, into the big blue yonder, over the hills and far away!

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Summer mission trips were an annual event for youth group kids and during his tenure Pastor Bob decided to lead a summer missions trip to South Korea [5]. At the encouragement of his mother (and because a pastor would be going along), Jim went on the trip.

I didn’t go on this trip but a few close friends did.

High school summer missions trips are typically a combination of building cultural awareness for the attendees and engaging in evangelism activities. So in between visits to orphanages [6] and helping out at churches in poor, seaside towns, the trip included detours to bustling Seoul streetcorners not much different than those from a typical large American city. There was noise, there were crowds, and the task of chaperoning a group of kids became even more stressful in the midst of all that activity. It wasn’t made much easier by the presence of Jim.

On one particular street corner Jim had a meltdown. It was anyone’s reasonable guess as to why: the sounds, the people, the heat. Only Jim knows why. It wasn’t out of character nor was it unreasonable, but it was inconvenient.

It was at this point that Pastor Bob turned to Jim, grabbed him at both shoulders and yelled, “STOP IT. STOP IT. BE QUIET. SHUT UP. STOP IT. BE QUIET. NO MORE.”

And Jim was quiet.

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##What causes panic attacks and meltdowns?##

I don’t know if you can understand this one. Panic attacks can be triggered by many things, but even if you set up an ideal environment that gets rid of all the usual causes for a given person, we would still suffer panic attacks now and then.

One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown.

When this is happening to us, please just let us cry, or yell, and get it all out. Stay close by and keep a gentle eye on us, and while we’re swept up in our torment, please stop us from hurting ourselves or others.

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At least during the scope of that trip, friends who attended told me that Jim was different from that day forward. Quieter, more subdued, more insular and less willing to participate in activities. More visibly frustrated.

People tell me that they don’t think what happened to Jim resulted in a “permanent” change. Soon enough after returning home he was back to normal. Eventually he moved to a church campus that opened closer to his home.

Pastor Bob was dismissed from his leadership position shortly thereafter. Not specifically related to the occurrences on the trip to Korea but more as a result of a pastoral period marked by egotism and incompetence.

Good riddance.

I wonder how all of our times with Jim could have been different had we read a book like “The Reason I Jump.”

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Footnotes

[1] Name change.

[2] Another name change.

[3] Yeah, right.

[4] It took several dedicated years of the subsequent youth pastor to undo the damage. His time was marked by genuine patience, sacrifice and love for the kids (which echoed my experiences with my own youth pastors).

[5] South Korea sends one of the three highest number of missionaries per capita in the world. Why a Korean church would send a summer missions team to Korea is beyond me.

[6] South Korea is also known for having an extraordinarily high rate of orphans.