Dear all,

Start by reading this:

“Imagine a daily life in which your faculty of speech is taken away, then the editor-in-residence who orders your thoughts walks out … A dam-burst of ideas, memories, impulses and thoughts is cascading over you, unstoppably… Now your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you’re in has no door or window, and relief will only come when you are too exhausted to stay awake. … [and then] Suddenly sensory input from your environment is flooding in too, unfiltered … You are no longer able to comprehend your mother tongue, or any tongue. … Even your sense of time has gone … this is your new on going reality.”

For my article of the week, I am sending you extracts from this lovely, insightful book I recently read: The Reason I Jump by, Naoki Higashida.

The above quote is from one of the translators, father of a 3 year old with autism.

Naoki, a young Japanese boy with autism, wrote this book when he was 13, via an alphabet grid, a method of non-vocal communication.

As we care for so many children with autism, I found this book very insightful in shedding a light on their reactions, especially in our “hostile” environment. I am humbled, and though I cannot claim to know a lot about caring for children with autism, I am sharing quotes from this book in order for us to ‘understand’ our patients and hopefully care for them better – with real patient-centered care.

Note, because of copyright issues, I could only put a few extracts to fit 1 page. I will be more than happy to lend anyone the book, or you can easily find it online.

Enjoy, Rasha

Extracts from The Reason I Jump, by Naoki Higashida

 What’s the reason you jump?

… people with autism react physically to feelings of happiness and sadness.

Do you find childish language easier to understand?

Children with autism are also growing and developing every single day, yet we are forever being treated like babies. I guess this is because we seem to act younger than our true age, but whenever anyone treats me as if I’m still a toddler, it really hacks me off. … treat us as we are, according to our age. Every time I’m talked down to, I end up feeling utterly miserable.

 Why do you speak in that peculiar way?

… the words we want to say and the words we can say don’t always match that well. Which is why our speech can sound a bit off, I guess…

Why do you ignore us when we’re talking to you?

… I still don’t notice when [people are] talking to me. … not the same as “deliberately ignoring”. … use our names first to get our attention.

 Why don’t you do what you’re told right away?

Here’s how I have to go about things:

• I think about what I’m going to do.
• I visualize how I’m going to do it.
• I encourage myself to get going.

 Why do you move your arms and legs about in that awkward way?

… I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. … Children with autism have problems perceiving and gauging distances. …

Do you enjoy your free time?

… [It’s] not so much what we want to do as something we can do. Playing with familiar items is comforting because we already know what to do with them, so then, of course, people watching us assume [that’s what we like to do]. What I really want to do, however, is to get stuck in some difficult book or to debate some issue or other. We are misunderstood, and we’d give anything if only we could be understood properly.

 Why do you need cues and prompts?

People with autism are sometimes unable to move on to their next action without a verbal prompt.

Why don’t you do what you’re supposed to do, even after being told a million times?

We understand what you’re telling us okay, but somehow we just repeat the sequence. … the impulse trumps the knowledge …. The next thing I know, I feel a sort of electrical buzz in my brain, which is very pleasant …. Maintaining this grip on myself is really, really, really tough. … we need your help with your patience ….

 What causes panic attacks and meltdowns?

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.