To the Dad Who Felt Guilty for Not Knowing How to Raise a Child With Autism
You and I have been through it all. Rather than feel sad about the time and laughs and talks we missed, I like to think about how much stronger the tie binds us has become. It’s been pulled, knotted and tested in every way possible. I know the autism diagnosis I received not even a month after my 21st birthday was one of the bigger stressors in our relationship. Autism combines amazing strengths and surprising deficits, and I’ve got both.
For a long time, I thought your distance was because you didn’t believe the diagnosis. That made me feel like you were denying just how hard some things are for me and just how great I am at others. It took me some years to realize that the reason you tip-toed around the a-word was not at all because you disagreed that I have a shockingly good memory, some mighty quirky social skills and a hard time communicating my emotions. The apple sure doesn’t fall far from the tree — and that’s just it. You knew that.
You knew there wasn’t a thing wrong with my social skills or my complete infatuation and insistence on talking about cats. You knew there wasn’t a thing wrong with the way I tended to lose control of myself when my emotions got too big and I could no longer put them into words. You knew I wasn’t broken. You knew I was a whole lot like you. The reason you were so wary of the word “autism” was because it carried a medical tone, and you never wanted me to see myself as diseased or broken or defective in any way. I didn’t need treatment and medications and cures — I needed to be supported in a different way, and the very first step in all of that was to know there was and is nothing wrong with me at all.
More recently, I’ve picked up on the ways you felt sad, maybe even guilty, about my life as a little one. No one thought of autism when a 2-year-old girl talked about the life cycles of aphids or when a 4-year-old read chapter books on long car rides. No one thought of autism when that girl screamed bloody murder and then flat out refused to put on tights of any kind, or when she rejected every shoe in the store, or worse yet, when she refused every food option in the house. It wasn’t an issue of my autism being too subtle for anyone to recognize; it was an issue of many professionals being oblivious. They lauded my strengths, and they put the blame on me for my weaknesses. Try harder, you’re smart enough to know better, stop being so dramatic!
They told you to take control. They told you I’d eventually cave and eat all those foods my brain didn’t register as edible. They told you that when my ankles and knees and wrists hurt, that sometimes kids say those sorts of things for attention, and if I didn’t get any, I would stop.
I know it hurts you because I’ve heard you say so many times that you would have done so many things differently, had you just known. I know you see how much my little sister has been able to achieve since her struggles, though different, were identified earlier than mine.
But, Dad, here’s the thing, and please, listen closely: You did so much right.
You knew that putting clothes on a kid that made her scream served absolutely no purpose except to show power over her. Out went the tags from all my shirts. You knew that starving a 3-year-old was completely senseless, that I wouldn’t have eaten a raw piece of broccoli if it was the one way available to save my own life. You knew that encouraging my quirky and intense interests was a fabulous way for me to learn far beyond on the classroom; we discussed Morse code, and I watched as you plotted a pin on a big map of the world every time you spoke with another person on your home-build radios. When I wanted to shave, just like Daddy, you didn’t explain that girls become women and that whole thing… you quickly came home with a kid’s shaving kit so I could shave with you. We cooked, and we camped, and, though it’s hard for me to believe I ever did, we inspected the grubs that came up in the soil when you worked in the garden. You wrapped my sore joints and gave me an ice pack. You played the song you wrote for me when I was a baby — no lyrics, just the most beautiful melody I’ve ever heard, and also one of my earliest memories.
You raised an Asperger kid in precisely the way I believe almost every kid should be raised. As an advocate. I engage with many parents and answer their questions about which therapies, which groups, which pre-set curricula to choose. I tell almost everyone that most kids need to talk to people in Bolivia on hand-built radios, then plot the spot on the map, and hold grubs in their hands, and listen to their very own lullabies and learn to find the keys on the piano.
There’s certainly a lot fighting against me to have any kind of normal life. But I cannot imagine a reality more incredible than the one I live. I have a Master’s, a great many irons in the fire that advocate for autism and fill my time with my greatest passion, and no kids but one delightful kitty. Not to mention, I have the confidence to tell everyone I meet all about that kitty of mine because my kitty obsession is what makes me who I am.
You never wanted me to think of myself as broken, and Dad, there is nothing broken about the way my brain processes the world. It’s just like yours, except I must have gotten the talking gene, whereas you got the listening one. Nothing makes me prouder than someone saying I’m just like my dad. So much of the person I am and the confidence in that person comes from the example you’ve set all these years.
If I could go back to diagnosis day, almost exactly six years ago, I would tell you all this right up front to save you the sadness of the time you didn’t know you’ve done everything just right.