10 Things I'd Tell Myself About Our Autism Diagnosis If I Could Go Back in Time

mom and son smiling at each other Recently a friend of mine asked me to lunch to get some advice about concerns regarding a family member’s child — concerns this child may be showing signs of autism. I gave this person as much advice as I could and went about my day. I left that lunch contemplating what would I tell myself if I could go back four years to shortly after my son was diagnosed.

I thought long and hard, and one of the first things I would tell myself is “Do not cut your hair! You will not look like Posh Spice! Don’t do it!” The second thing I’d probably say is, “Step away from the pie! You’re just going to gain a bunch of weight, which as you approach 40, will be incredibly hard to get off. And the constant pie eating isn’t going to make you feel any better anyway. Put the fork down. Now, before the lightning strikes the clock tower, and I have to get back in my DeLorean and travel back to 2014, I’ve got some real important sh*t to tell ya, so listen up!”

10 Things I’d Tell Myself

1. Stop blaming. It doesn’t matter how or what caused his autism. You’ve got more important things to focus on then the blame game. Above all else, don’t you dare, for one more second, blame yourself. It’s nothing you did, did not do, should’ve, would’ve or could’ve done. You are not the cause. All this mentality will do is drain you down to nothing but a shell of a resemblance of what might be left of a human being. Right now he needs you — all of you. He needs that precious energy, and so do you. He’s on the autism spectrum. Move on.

2. Quit spending countless hours on the internet chasing down that next new treatment/therapy in Timbuktu, which may or may not have worked in 2 percent of kids with autism. Go with your doctor’s recommendations. Listen to the professionals. But above all that, listen to your gut.

3. Pray. Pray a lot. Pray in the car. Pray in the store. Pray before you go into the store. Pray in the parking lot. The prayers don’t have to be an ode to Jesus. They can be as simple as “God, I need you! We need you. I can’t do this without you.” Short and sweet. Just pray. Prayer was, is, and always will be, in my opinion, the most powerful weapon in your arsenal.

4. Laugh. Learn to laugh quickly. Laugh a lot. Laugh at as much of it as you can. It sure beats the hell out of crying. And truth be told, crying won’t change a damn thing anyway. Laughter will be the second greatest weapon in your arsenal.

5. Quit waiting for it to get easier. It’s not going to. You’ll get stronger. You’ll even surprise yourself. You’re a badass. You just don’t know it yet.

6. Quit, quit, quit trying to fix him! He is not broken. Focus on helping him to evolve. Help him, teach him and work with him towards evolving into the person God created him to be. Accept that he (just like “typical” children in this sense) will be who he is. Not some ideal of a picture you had in mind. He is special. He is unique. He is one of a kind. He is who he is. He just needs a little (sometimes a lot) more help along the way.

7. Be patient. Be patient a lot. Be patient in the car. Be patient in the parking lot. Be patient in the store. Learn patience quickly. And I don’t mean just with him. Be patient with yourself, too. You’re not perfect, and you don’t need to have this all figured out. No one expects you too. And you know what else? No one else has it all figured out either! In the end, we’re all just winging it.

8. Avoid Autism Tunnel Vision. Do not make it all about autism all the time. Quit with the “If he didn’t have autism he would/wouldn’t do blah, blah, blah.” While sometimes that may be true, sometimes it’s not. Sometimes he’s naked because he’s a little boy. Sometimes he’s stinky because he’s a little boy. Sometimes he’s cranky because he’s a little boy. He’ll have some good days, and he’ll have some bad days. And sometimes that will have absolutely nothing to do with autism. Repeat after me: “He’s still a little boy.”

9. F*** those ridiculous spreadsheets of what he should be doing by what age his “typical” peers are doing at that age. I firmly believe beyond the diagnosis stage, this is a pointless piece of paper that does nothing but torture your mental wellbeing. Ignore them. Throw them in the trash. He will progress at his own rate — not when Timmy, Tommy, Jimmy or Johnny does. And he sure as hell won’t do it based on what some crap piece of paper says.

10. Get thicker skin. Ignore the stares, the silent glances and the looky-loos. People won’t always be kind or compassionate. Forget them. They’re the problem, not you and certainly not your son. You walk in like you own that store or restaurant, walk in like you both belong there. Because you both do.

11. Brace yourself for curveballs, like when someone says they have a list of 10, and it turns out to be a list of 13… There will be times when curveballs will happen — skills your son will acquire, then without cause or explanation, lose. There will be times you’ll think a certain less-than-desirable behavior is under control, and then — whammo! — it’s back with a vengeance. But you’ll learn this is all part of the ebb and flow of autism. He will progress, he will regress, he will progress again. The curveballs will happen, but you’ll learn to swerve.

12. Look back. I’ve read so many quotes, about not looking back — except in your case, you need to look back. And you need to look back regularly. Look back at how far he’s come and the progress he’s made — the progress you’ve both made. You’ll especially need this reminder when he’s in a meltdown that lasts 15 minutes, when you can look back and remember when they lasted for 45. You’ll especially need this reminder when he’s only eating five or six things, when you can look back and remember when he only ate one or two. You’ll especially need this reminder when he’s only saying 25-30 words and you can remember when he only said one. You’ll especially need this reminder on the days when you’re in a full-blown pity party, and he says (in his own special little voice), “I love you,” when you can look back to a time and remember when that was just a dream.

13. Love. Love him. Love yourself. Love the journey. Above all else, the love is what will keep you going. And here is where you have an advantage above those who have not been on a journey like yours. The love you’ve gotten to experience is unlike any other love you will ever know. It has pushed you, pulled you, damn near broken you, shown you its dark and shown you its ugly, and because of that, it’s the strongest love there is. It has been pushed to the brink and withstood Every. Single. Time.

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