You Have Permission (A Letter to New Autism Dads)
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.
Great job, Jason. Nothing is so helpful as gettin’ real, and you got really really real. Way to ‘man up!’
Thanks, Kathy. Trying to stay real right where I’m at, and hopeful at the same time. It’s taken a while, but I’m learning.
Love it, Jay. Well written & so true.
Thanks, buddy.
We’ve shared this letter with the MyAutismTeam community. Thank you for writing.
Thanks so much for doing that, Mary. You sent a huge flood of traffic over! I’m glad to see it resonated with so many people. I’ll be keeping up with your page.
Great, great, awesome post!
Thanks, Jake.
Well written Jason, you hit the nail on the head! My daughter has Autism and is almost 7 yrs old. Every day is a new day with her, but I wouldn’t have it any other way! Thanks for sharing this letter!
Sure thing. Thanks for reading, Jeff.
Fantastically written. I read it also in a Moms point of view.
Thanks, Martha. Yeah, it can definitely apply to moms as well. Any time there is a ton of emotion and conflicting information involved, confusion sets in, and we can start to feel lost. Thanks for reading!
Thanks for this Jason, my “autistic” son( my use of language because he is) is 21, sometimes it can be a very lonely world but equally a rewarding world to. I have developed a great inner strength from,y son but occasionally my mask slips and this is OK but like you say we(I) can never give up hope. Keep the faith Jason
Kev from England
Don’t worry about the mask, Kev. And thanks. 😉
It’s amazing how a message can find you when you most need it. Thanks, from a mom needing to read this.
I’m glad it found you, Jen. Thanks.
Amazing story. I know what this father goes through. It’s the biggest pain and biggest joy in the world.
The story inspires me. I needed to read this. Thank you.
Glad t hear it. Thanks, Joe.
Just about says it all, from where I was at, to where I am now, right through to where I want to be, while I’m about, to do something about it. Brought a tear or two to my eye, but I know We as parents can get there. Thanks Jason for sharing.
Indeed. We can get there. Thanks for reading, Declan.
What an amazing way of putting things! A huge problem we face when helping families with Autistic children is that DAD’s are not onboard for so many various reasons. I will try and translate it to arabic but both ways ill share it on our fb AutismMena and twitter @Autismjo. THANK YOU!
Thank you so much for reading and sharing. The lack of involvement from fathers is certainly a huge problem in the U.S. as well. I was guilty of it early on. Dads need more encouragement than they let on. Blessings on your work in the Middle East and Northern Africa!
this is so powerful, so refreshing to read a dad’s perspective as there are so many mom blogs out there on this subject. I graduated last night from Restoration class, I talked with Pastor Doug and he told me to check out your blog. We too have a son on the spectrum and my husband is a pastor 🙂 I am excited to read more of your posts and to share with my husband!
Wonderful! Glad to “meet” you. I hope the class was a blessing. It’s always nice to find other autism parents in ministry. I hope you’ll find some encouragement in my ramblings 🙂