Autism Spectrum Disorder Level 2 Severity, Requiring Substantial Support
I have been waiting for this nondescript envelope for weeks, checking the mailbox Monday through Saturday with a little catch in my throat as the door dropped open, momentary disappointment when it failed to appear. And then today, finally, it arrived. It took all I had to not throw the car in park right there on the street and tear it open while people impatiently tried to maneuver around me. I had half the flap ripped open before I was all the way into the garage, flipping through the pages like a hurricane, scanning for “diagnosis” —
and there it was. Page 15.
After three years of testing and suspecting, hoping and waiting, anticipating and dreading, here it was in black and white.
Sensory processing deficits.
Delayed language pragmatics.
Fine Motor Dysgraphia.
So many terms and words, 22 pages of them, dense forests of Calibri size 12 seeking to define you. Much of it does describe you:
“a sweet child who struggles with communication skills and social awareness”
“significant anxiety symptoms in multiple areas”
“extremely sensitive nature.”
There’s no denying what my heart has known for longer than I’ll admit to myself, even now. For almost nine years, we wrote things off as you being sensitive, quirky, marching to the beat of your own drum, your mother’s child. And I mean. You are all those things as well. Your heart is as wide open as the sky. You experience things in a way that is uniquely you, and you’re not afraid to be yourself when expressing that. You have my hair and my eyes and my spirit. But there’s other stuff, too. There’s inexplicable meltdowns. Rage like a tsunami that you turn on yourself, angry fists on a shoreline of flesh. Noises that are too loud, food with too many tastes, awkward navigation through a social scene you just don’t get. Desperate tears and pleas for an answer to the heartbreaking question of “Why am I like this?”
At least now we have an answer.
And you know what? I’m so glad we do! I’m not sad about this. I’m grateful. This means we can make the years you have left in school so much more enjoyable and successful. Having a concrete diagnosis was just the first step. Now that we know what we’re dealing with, we can make life so much better for you, which is what I’ve wanted all along. This was never about pasting a label on you. It was about finding ways to make this world work for you for once.
When I sat you down this afternoon to talk all this over, you got very quiet and your face looked very sad. “I don’t want anyone to know I’m…..autistic,” the last word almost a whisper. I started to give you a speech on how you can be an autism ambassador….but I had to back that up real quick when I actually thought about what you were saying. Ultimately, this is your journey. I’m here to help you carry your bags, and make sure you get to the airport on time, but autism is your plane and I don’t have a ticket. That means I don’t get to tell you how to respond to this news. I don’t get to push an agenda of acceptance. I don’t get to decide who you tell and who you don’t tell, outside of teachers and doctors. But let me tell you a little bit about why I want people to know you have been diagnosed with autism.
First of all, you are such a wonderful human being. I know a lot of people don’t get you, including me sometimes, but even misunderstood, you are amazing. You soul has been old since your first breath, and probably before. I read a quote once about how having children means forever walking around with your heart outside your body, and that’s right but not exactly right, because it’s really more like transplanting a part of your soul into another body, a spiritual graft, and for the rest of our lives, we’re just waiting to see if it takes. Except with you, I know we got it right, I know I never have to worry about you rejecting the best parts of us inside you.
Also, you’re different, but in the best ways. You like the things you like and our palpable disinterest doesn’t deter you in the slightest. You are honest to a fault. Whoever said that kids with autism can’t empathize clearly never met you, because you’ve inherited my overactive empathy gene, and feel things far more deeply than many people your age. I’ve never seen somebody try so hard to be funny, just because you want to bring a little joy and laughter to someone else’s day. You will meet any child right on their level – I’ve seen you play with kids from two up to twelve and beyond. You don’t run fast and you aren’t very coordinated, but that doesn’t stop you from running, hooping, hiding and seeking. You are incredibly concerned with fairness and justice, which the world could use a whole lot more of, if we’re being honest. You want to be heard, and you will fight for that right until we listen. You are so smart. Sometimes, the things you say, I just look at you and think, “I made that,” with a complete sense of disbelief. Your brain is big and beautiful and a fascinating landscape of topsy-turvy imagination, logic, creativity, and about seven million obscure facts.
See, the thing is, there are parts of you that are from me, parts from your dad, parts from like, a great-uncle three times removed, probably. And there are also parts of you that are autism. Does it make your life a little bit harder? Yeah, undoubtedly. Does it make our lives a little more difficult? Probably. But all those parts of you, even the stuff you might be embarrassed to talk about, it all comes together to make you who you are, and who you are is freaking fantastic. I am so glad I get to go through this life being your mom. So much of who I am today is because of you.
Yeah, these 22 pages have been a lot to take in, I’m not going to lie. But somewhere around page 12 or 13, tucked in among a bunch of big words exploring bigger concepts, I saw this:
“Quite positive is that David indicated that he likes himself, is a good person, and feels happy.”
And that’s when I knew this was all going to be okay. You’re going to be okay. Better than okay. I love you. And I like you! I truly do. You add so much to our lives. And I want you to know that your dad and I, your friends, all of your family who love you beyond measure, we will work and fight and stand up for you and your rights every single day to ensure you continue to like yourself, to feel like you’re a good person, and to be happy.
We loved you yesterday without an autism diagnosis. We love you today with one.
Always and always.