When my son was first diagnosed at thirteen, a psychiatrist told me that autism is extreme self-centeredness.
There’s a lot to parse out in that statement. It’s definitely a generalization. It implies a level of narcissism that I definitely think isn’t fair to dump on every autistic person. It also suggests a lack of caring about other people that I don’t think is fair.
But, if I’m being completely truthful — it fits. For my son, it fits.
It fit long before he was thirteen. He always required more attention, more effort, more everything than his sister who is only 16 months older than him. It isn’t just that his world revolved around himself — and it did — it was that he had a kind of gravity that required everyone’s world to revolve around him as well.
Because Nick was born in the early 1990s, when autism wasn’t the juggernaut it is now, his diagnoses was hard fought. He didn’t have a speech delay. In fact, he started speaking ridiculously young — he was a precocious speaker.
This was before the age of early childhood intervention for autism. I think he would have been diagnosed earlier if he’d been born a decade later.
Instead, he was misdiagnosed with the diagnosis of that day. His pediatrician told me he had ADHD when he was six and couldn’t function in first grade. Autism was no where on anyone’s radar for this little dude who talked like a thirty-year-old on his second birthday.
I knew, of course, that school was going to be an issue. Not because he’s not smart — he’s sharp as a tack. But because I knew the amount of work it took to take care of him and I knew, when he went into kindergarten, that a teacher with 30 other five-year-olds to care for was going to struggle with my kid.
Kindergarten sucked and by the end of the year, the school was insisting that he be evaluated for something. And I wanted to do the best I could for my baby. I was very young, a little scared, and I didn’t question the ADHD diagnosis for three years.
And then, one day, the meds caught up with him and he started hallucinating.
He was misdiagnosed again at nine with bipolar disorder. There were a few years there, between age nine and age thirteen, when I was really afraid for him. He was on medications that changed his personality, made him lethargic and dull.
They helped him to sit quietly at school — sort of — but it hardly seemed worth it.
When he was finally diagnosed with autism and taken off all of his medications, the relief was so strong. That psychiatrist told me that autism was extreme self-centeredness and I remember thinking that it didn’t matter. I didn’t need a warning about autism.
I’d been living with my kid for thirteen years. I knew what autism was, even if I didn’t have a name for it in my kid until then.
Nick is the center of his universe. We all just breathe his air.
For twenty-ish years, getting him grown up — getting him through school, out of childhood, into his adult life — was the center of my universe. My ability to work centered around him. That was fun when I was a single mom. Also? My ability to sleep, because even as a baby Nick needed a ridiculously small amount of sleep.
You haven’t lived until you’ve been a single parent to an undiagnosed autistic toddler who needs three hours of sleep a night. Fun stuff.
So for years (and years and years) life in our whole family revolved around Nick. Two misdiagnoses meant that he was constantly at the doctor, including a three-month psychiatric hospitalization after those hallucinations started. I was pregnant with his younger sister at the time. That’s where he was misdiagnosed with bipolar disorder.
School was a constant nightmare. It felt like a never-ending battle with me school on one side and me on the other, trying (again) to make them understand that no, he can’t just try harder to be normal.
For so long, it seemed like life would always be about getting Nick grown up. I was twenty-two when he was born. I’d been graduated from high school for four years, for Pete’s sake. I was barely a grown-up myself.
He turned twenty-six this week. If you’re reading this and you’ve got a kid like him, I want you to know it gets better. It gets easier. It gets less scary when they need less sleep than you do. It matters less when they don’t conform as well as people are supposed to in order to get even semi-smoothly through public school.
They grow up.
It was being done with school that made the biggest difference. Being able to make his own choices made the whole self-centeredness thing less difficult to manage.
He got home last night from a trip to England where he was visiting his boyfriend — who he’s had a long-distance relationship with since he was eighteen. He navigated international travel and a complicated trip from our small town in Pennsylvania to New York City to make his flight.
He’s working his way through understanding what it takes to get married to someone who lives in another country.
He lived in his own apartment before we moved to Pennsylvania and he’s moving into an apartment in our new town this week. He works. He has friends. He’s happy.
He still has autism, of course. He always will. But he grew up, just like every kid does.
Shaunta Grimes is a writer and teacher. She is an out-of-place Nevadan living in Northwestern PA with her husband, three superstar kids, two dementia patients, a good friend, Alfred the cat, and a yellow rescue dog named Maybelline Scout. She’s on Twitter and Instagram and is the author of Viral Nation and Rebel Nation, and The Astonishing Maybe. She is the original Ninja Writer.