We are all of us misunderstood. No one can take in my words, your words, and hear them as meant. We cannot even mean them as we say. This is what we live in. This is what is understood. And we go on in our judgments and our openness, our apathy and our passion. Heard, unheard, judged nonetheless.
In this swamp of expectations and ignorance, self-righteousness and xenophobia, I try to raise my autistic son—with his father, who is disappointed, a twin sister who sees that whoever has the crisis owns the parents, and the outrageous luck to arrive in a world that cannot parse his value: They cannot monetize him.
Even his therapist, the area’s single willing specialist who accepts spectrum clients into his sanctum sanctorum of the couch and the notepad, tries in his highly educated way to make my son like everyone else. With enough training, maybe he won’t be noticed among the neuro-normals. Is that the goal?
Does my son ever wish, inside his deliriously brilliant and abnormal mind, “Oh gods, oh Freud, Jung, and Dustin Hoffman, please make me just like everyone else”? Is it his fervent wish to blend? Who would he be? Here is a crowd of neuro-normals. In their midst is my joyous, paranoid, odd, brilliant, obsessive, raw-hearted, and miraculously innocent son. But of course, no one can pick him out of the crowd. His esteemed therapist will have done his specialist magic on him. Good—he won’t make anyone uncomfortable. Now we can get him a job at the Safeway packing groceries. Sometime later, when we’re all dead and gone and our influence melted into the sweet, maggotted earth, he can think about what a held and celebrated, owned and adored life is.
You must get used to being stared at. And I did. They all know when they get their first glimpse of him and size him up, judge him so easily in their simple ignorance, that something’s wrong with this kid. By their postures, the dart of their eyes, the empty radius of space they leave around him, I know, free from the sting of giving a damn what anybody thinks, that someone out there is judging: “Retarded,” “Schizophrenic,” or, “Spastic,” and they’ve taken care of their discomfort.
“Have you ever seen an autistic adult?”
“Yes. You have. You just thought, ‘Retarded? Schizophrenic? Spastic?’ and moved on. That was my son: intelligent, compassionate, principled, loving, unhealably lonely. He just doesn’t know what it means when you lift your left eyebrow a few millimeters, then look at your watch. Sometimes he has to hop, or moan. That’s why he lives in his world, you live in your world, and no one talks to him.”
With my son, they don’t know what to do. Try to enter his world? Force him to ask permission into theirs?
I have learned not to care, or to push caring away, nor to waste my heart ceding judgment to the privileged same who perceive him as something gone wrong. That is a commandment. I cannot care what they think or dedicate my worries investigating whose fault this was: Was it my old sperm or your old ovaries? Was it a vaccination? A virus? Gluten? Immunodeficiency? If I do, then who am I to my son and who is he to me? If I am anything but my love for him, I would not have felt pure joy in this:
I was in the kitchen breaking the ends off of twenty stalks of asparagus, very fresh and freshly washed, two shades of green. My son, turning in circles, spiraled into the room and stopped by my side.
“You want to help me?” He was eight. Reading was still easier than listening, writing easier than speaking.
I showed him how to break the stems off. “Right there, where they want to snap. See? You try.” He did. It snapped clean in his hand. His smile was ecstatic. We broke the rest together.
Then when we’d finished, we put them all in the steamer. I showed him how it worked.
“The water boils; the steam goes up through the holes, and the heat cooks it. Remember?” He looked at the refrigerator. He remembered. When he was four I’d had a pot on the stove and the freezer door open. He’d run between the two, then stopped in the middle to observe.
After scrutinizing, “Hot smoke up; cold smoke down.” It was a shocking burst of language. I’d picked him up, carried him back and forth, then sat down at the table and wrote it out so he could read it, fix it in place, visible, before it tumbled away to wherever spoken language went after it was spoken. He read it. “Hot smoke goes up. Cold smoke goes down.”
We put the lid on the steamer, and he followed me back to the sink, but was being called elsewhere. In slow circles, he spiraled around me, smiled up into my face as he curled to the door. Exultant, he said, “You love me so much.”
I explained him to the teacher with too many students. She only wanted order in her classroom. “He needs a smaller class, more challenging material. He taught himself to read at two and a half to get around the language problem. He does comprehend. But he won’t be able to take the commotion, too much stimulation coming at him from all sides, and he won’t be able to learn. He’ll go into overwhelm, put himself in shutdown. That’s bad for everyone. With twenty-eight six-year-olds, you can’t spend all your time on him.”
“This is an appropriate placement,” the Special Ed head repeated.
I had to fight the district and the special education department: documented proof, exhibit A, exhibit B, lawyers, months, money, aggravation. Shouldn’t they be on his side, provide what he needs to thrive? Well, yes, but for the funding. In the meantime, with no school placement, I kept him home. Three tantrums a day: not bad. My son and I could survive it, but the father walked out. It was too much for him: not good.
And that’s the way it all proceeds, staggering forward, progress and stasis, crisis and leaps ahead. He was never the problem. The greater context was. They cannot parse his value. So it’s mine to create it in figures they’ll understand. And what do I know about the world? That answer’s easier than what don’t I know. Either way, I’ll have to know what I don’t know so I can teach my son. He is lost in the world but for me.
The physician judged my stress level and ordered me to reduce it; she read on my chart that I had an adult dependent son with autism. She passed judgment in her certified doctoral thickness. “You need to get your son out of the home. There are many government facilities where he can get the care he needs. That’s the first thing you need to do.” She looked at me sternly. (This is a mother who cares too much and has an unfortunate case of hope.)
I cited Newton’s third law of physics: applications in real time.
“My son is brilliant, and he loves more deeply, more purely than normal people can ever bear. He is not sucking me dry. I don’t throw him out on the street.”
She cut me off. “You’re trying to give this back to me,” she snapped with a scholarly bark, “but I’m not having it.” She lectured me about county agencies, social services, placement in a group home perhaps, and why this hope problem was hurting me. I needed to let go and get on with my life.
She is an amalgam of concerned experts in the field. And some “friends.”
How could I understand her? Or do I just condemn her? Certainly she had condemned me. Should I try to explain, can I force her to know what she’ll never know unless her ignorance disrupts her own heart? Or do I just let it go and get on with my life?
I am disabled in that I find salvation everywhere—in my son, in myself, in words strung together in their proper order, even in the great fortune not to have been born as someone else. It can be held for the moment, but it can’t be shared. I will likely live and die in this brave confusion and mother’s love.
Tobie Shapiro is a composer and cellist who has also worked as a visual artist, cartoonist, graphologist, and professional chef. She was a columnist for the East Bay Phoenix and has been published in American Writer’s Review, Songwriter Magazine, The Monthly, The Coachella Review, and in the anthology Fire in the Hills: A Collective Remembrance (1992). She has attended numerous writing conferences with The Opening and studied with Andy Couturier. She lives in Berkeley, California, with her family.