Holding Leo’s Hand: The worst thing about having autism


This is an excerpt from The Reason I Jump, by Naoki Higashida. Click on the title and purchase the book on Amazon.com.

Naoki was, at the time this was written, a 13-year-old boy in Japan living with autism. He was not someone capable of carrying on a normal conversation, but using a specially designed keyboard, he was able to express his thoughts so eloquently that he became a voice for those who struggle to let the world know what’s going on inside their heads.

My son, Leo, was diagnosed with autism in mid-2012. I’m reproducing this question and answer to remind myself what my son is going through, and how I can help him by exercising just a little more patience.

[Note: I no longer believe the premise behind this excerpt, but I do sympathize with the sentiment, so I’m not deleting it. 9/5/2014]

Q. 23: What’s the worst thing about having autism?

You never notice. Really, you have no idea quite how miserable we are. The people who are looking after us may say, “Minding these kids is really hard work, you know!” but for us — who are always causing the problems and are useless at pretty much everything we try to do — you can’t begin to imagine how miserable and sad we get.

Whenever we’ve done something wrong, we get told off or laughed at, without even being able to apologize, and we end up hating ourselves and despairing about our own lives, again and again and again. It’s impossible not to wonder why we were born into this world as human beings at all.

But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have — and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. 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.

Leo Olmeda, age 4

Leo Olmeda, age 4

Response:

No two autistic children are alike, and I have no way of knowing whether this excerpt reflects how Leo feels sometimes. I’m going to respond as though it does.

Leo, Mommy and I love you with everything we are. We absolutely adore you. Nothing makes us happier than seeing you happy. I may not always understand you, and I may lose my patience sometimes. That’s not because there’s something wrong with you, my son. It’s because there’s something wrong with me. I need to be a better dad to you sometimes. Believe me, I’m trying.

You are NOT causing us grief. And if you feel that you are, it’s because I’ve failed. I hate it when you cry, because I want you to always be the smiling, happy, beautiful boy I know you are. So I’m going to do my best to help you, to remember your challenge and to rise up to mine as your dad.

Sometimes when we talk about being sad or unhappy, it’s temporary. It’s because you hit your brother or spilled water out of the tub. We don’t like when you do those things. But that’s not the same thing as you making us unhappy as your mom and dad. When it comes to you being in our lives, you being our son, our responsibility, our privilege, when it comes to those things, you bring us nothing but joy. Yes, even on the days when you’re a challenge. You’re our challenge, and we embrace it as much as we embrace you. Never, ever, ever think you bring us grief. You are our son, and we love you unconditionally.

I will keep trying to be the dad you deserve.

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