I am a strange mother. I was thinking, with a smile, of last New Year’s Eve, how my son Nat drank some spiked lemonade and passed out after midnight. His roommate John texted me the next day to tell me. And I was laugh-out-loud happy. Nat partied hard with friends on New Year’s Eve! How great is that!
Okay, maybe I am not as odd as I sound. Nat, who is 26, has fairly complex autism, and so his social development has been hard-won. So even a night of drinking might actually be cause for celebration in my family. In fact, it felt like a rite of passage to me.
I do not condone heavy drinking, but once in a while a person can celebrate under safe circumstances. Nat was with John, who is his caregiver, friend, and peer. They’ve lived together for two years. They’ve made a home together in a two-bedroom apartment nearby.
This living situation – called Shared Living – is a dream come true for me. For most of Nat’s life I have had to contain my wishes for him, squeezing my overflowing mother’s heart into a narrower, perhaps more realistic shape. I don’t blame autism, exactly, for the limitations on Nat’s life. If anything is to blame, it’s the limited imagination of our society.
The world we live in is aware of autism but that’s about it. We’re not aware of accommodating autism. Until recently the general population believed that autism was rare. But autism has always been here, according to bestselling author and writer Steve Silberman, who in his new book Neurotribes: The History of Autism and the Legacy of Neurodiversity, has done research aimed at finding these misunderstood, misdiagnosed people lost to the world for centuries.
Where were autistic people? Kept at home, or in the many institutions for misdiagnosed mental disorders or intellectual disabilities. They didn’t go to public school. Higher functioning autistics were likely thought of as strange, oddballs to be avoided. They were institutionalized for the slightest sign of difference. When many institutions were closed in the 1970’s and 1980’s, and then autistic children started being more accurately diagnosed, this population became more visible. But not understood.
This was true for me, too. Even now, most of the time I need to understand Nat without words, through a combination of watching his body language, and listening to his very quiet unintelligible self-talking.
When those strings of Nat-words first emerged in early childhood, they seemed to loop and coil in the air, playful, joyful, and we called it “silly talk” — a deceptively lighthearted term for something I actually feared like a disease. Surely this was a sign of deep disability, far worse than we had realized when he was first diagnosed. And it was a call to arms for me. I had to get rid of it, or he would never be okay.
Thus began a long hard era of my battle with autism. Nat’s teachers at the time exhorted us to “engage” him – force him with behavioral modification to make “normal” responses. Interrupt him, redirect these impulses of his, dam up the ever-opening tributaries of aberrant, abnormal behavior, or else he would be lost.
And so, raising Nat was exhausting, debilitating. But at some point I realized that as difficult as our struggles were for me, they were far worse for him. For what is a child to make of always being given the message that he is off somehow, that every sound that comes out of his mouth had to be caught by watchful Mommy, and pummeled into something else?
I don’t know when the light went on in me, when I realized I could stop fighting autism. “It” wasn’t working, anyway. Silly talk will out. One’s true self must be nurtured, whomever he might be. That’s the true task of motherhood.
What a relief it was to finally understand that, and to let go of all the fighting. Suddenly I knew in my core that yes, my job as Nat’s mother was to help him be the best he could be, to educate him about how to act in the world, but to let him be who he was.
One way that I could help him do that was to arrange for him to live away from me. I believed that a more organized structured life at his school would provide him the space and peace he needed to learn and to become more independent. Since the age of 17, Nat has had roommates and skilled caregivers, who took over from me the work of teaching him independence. Though a positive development, Nat living away from me has often been heartbreaking to me. A part of me will always fear that I was wrong to choose his independence over living with me. And because I just plain miss him.
I understand for the most part that I did make the right decision. Because now Nat can live comfortably apart from me, and grow as a young man. Like many guys in their twenties, Nat lives in a small messy apartment with a roommate. They go to the gym and work out. They shop together, “chill” together.
They have a real life, in the world, and just by being together they show the world what is possible for even the most disabled of us.
So when I get happy news from John – even that they’ve been drinking mojitos together — I realize that with or without “normal” words, Nat is his own man.
I’ll drink to that.
Copyright 2016, Susan Senator