Dear Autism Dad,
This past weekend, I went backpacking with some friends through Big Indian Gorge in Eastern Oregon’s Steens Mountain. From a distance, Steens appears as a tall, wide rock with some snow on it. A two dimensional cutout along the horizon. But when I started toward it, the entire landscape opened up. Steens is a glorious maze of cliffs and creeks, gorges and waterfalls, aspens and sage. Every simple mountain wall turns out to be four or five layers of rock face, each with its own weathered angles and Instagram temptations that beg to be explored. The sights are as mysterious and beautiful as they are dangerous.
Likewise, this thing called autism–this mountain that has, it seems, picked your family–looks a certain way to you right now. It is large and looming, and you will be tempted to stay at base camp and “let her handle it.” But you’re better than that. And you’re a man. So suit up. Your expectations are already being shaped by many sources: books, family, movies, and blog posts that your friends have shared and tagged you in. That’s one reason you feel so apprehensive. But you love your kid. So you start walking.
You have heard that there will be dangers to look out for: things called IEP’s, insurance companies, vaccines, and depression. You have also heard that there are treasures along the way: miracle diets, adorable “Different Not Less” memes, bio-medical magic bullets, and a mindset called “acceptance.”
Dangers and treasures are real, but they often look identical. You will read about the horrors of vaccines, then about the insidious nature of those who distrust them. You’ll read a post scorning Autism Speaks… just as you’re “lighting it up blue.” You’ll spend a week Googling “Autism Cures,” then you’ll chastise yourself because you looked up “Neuro-Diversity” on WikiPedia. You will continue to love your kid, but you’ll want more for him. You will want to celebrate your child’s differences while simultaneously helping to normalize his future. You may embrace him a thousand times just before you send him to therapy.
And you’ll want to quit, because it’s all too damned complicated.
That simple landscape you saw from afar will have become a wonderland of confusion.
There is a dirty little secret about this whole thing that you need to know up front. All of those people who are screaming out for your attention–every single one of them–is on his or her own hike. Some are screaming down from a narrow waterfall, “you’ve GOT to try this!” Others are lathering up among the poison ivy, saying “Don’t come this way! Please!” Bloggers hang upside down from climbing ropes about whether to say “autistic” or “with autism.” And they will call down to you, “THIS is the way to see things.”
I’m not suggesting there is no truth on this mountain. There is. But even the experts can’t agree on causes or definitions–the most basic of landmarks. I trust they will, eventually. Just not yet.
Until that day, however, I want you to know this:
You have permission.
You have permission to be lost.
You have permission to not have an opinion.
You have permission to ask honest questions, and to not feel guilty or stupid about them.
You have permission to put your hat over your face and cry.
You have permission to yell at God. He can take it.
You have permission to go into a cave and swear at the top of your lungs.
And you have permission to strip down to your skivvies and cool off in the river when it gets too hot.
But there’s one thing you do not, dear friend, have permission to do:
You are not allowed to lose hope.
Your family needs you. Your child needs you. And he can feel it when you stop expecting him to win.
The hardest part about this hike is its unpredictability. You don’t know what might be around the bend. It could be a thousand foot cliff or a shaded meadow. You don’t know. But that is also the exact reason why you cannot give up: You don’t know what might be around the bend. Your kid has far more passion and ability than you realize, and you simply must give him a chance to use it.
So gear up, friend. Grab a buddy who will let you vent (but not keep venting), offer up a prayer of weakness, and get to it. The mountain is calling.
Photos courtesy of my good buddy Paul Nunn. Hire him and his wife, Anne. They are amazing.