When I tell people that my sons are autistic, they usually ask how severe the boys are. They want to know if I'm talking quirky, socially awkward autism or rocking-in-the-corner, barely-able-to-function autism.
It's taken me seven years to come up with an answer to this question. "They are not severely autistic," I tell them. "but their disabilities are severe."
Really, this is a false distinction. Autism is, at its core, a disorder of how the brain makes neural pathways, so my sons' disabilities go hand in hand with their autism. But many people think a person with severe autism is unable to relate to others and is dependent on routines to get through the day. That's not my boys. Kenny and Theo are loving and happy. They play and giggle and give big joyful hugs. Having structure helps them, as it does any child, but they are also open to new experiences.
But if I tell you my sons have mild autism, you'll think they're just kind of odd, maybe obsessed with numbers or dinosaurs or something, but basically regular kids who operate a little differently.
Their disabilities are severe, particularly in the areas of communication and social skills. They can tell me what they want, usually using a single word ("Biscuit") or a scripted phrase ("Come with me"). They cannot tell me what they did today or whether they had fun. And they have no interest in playing with or relating to other children. So describing them as mild dramatically understates the challenges they, along with my husband and me, face every day.
When it comes to communication, dealing with our boys is a lot like how it is for new parents. A baby cries and cries but can't tell you why. That's what Kenny, my 10-year-old, does. We'll hear him sobbing in the middle of the night, but he can't tell us why he's so upset, and try as I might, nothing I do comforts him. And I can't count how many times Theo, my 8-year-old, has flown into a rage for reasons I could never identify and he could never articulate. Thankfully, medication and developmental therapy have dramatically improved Theo's ability to deal with his anxiety and aggression, but he still has his moments, and they are still just as mysterious.
I imagine life for them is like living in a place where you don't know the language or the customs. You have a small vocabulary of nouns and some active verbs, and that gets you through your day. But most of the conversation around you is just noise, and trying to learn anything new is frustrating. There are so many extraneous words in even the simplest instructions that it's hard to catch the ones that are important. You miss out on most of the language that adds depth and meaning to your experiences. You don't understand why the joke is funny or that the song lyrics are beautiful. You've heard people say "I love you" a million times, but you don't know what it means.
Sadly, studies show it is not uncommon for African-Americans with autism to experience developmental disabilities more severe than most white autistic kids. There aren't many children who have gotten more therapy and schooling than mine have, so, in our case, a lack of resources is not to blame. It's simply who my boys are, at least right now.
As their mother, I walk a precarious line between hope for a better future and acceptance of what is. So far, it's been a harrowing journey, with periods of depression and despair. Raising my boys has upended my understanding of love, motherhood and community, and it has changed who I am.
I hope sharing some of this journey will give you a greater understanding of developmental disabilities, and more importantly, the challenges of parents like me.
