The Secret Life of a Black Aspie Read online

  The Secret Life of a Black Aspie is a highly anticipated book worth waiting for! Prahlad takes the reader through his life journey, moving through generations and differing locations, challenging assumptions of the meanings, experiences, and feelings of blackness, disability, and gender. Prahlad’s text is a thought-provoking mix of memories, images, and imaginations, with a strong dose of emotion. This is a terrific book!

  —Michael Gill, Disability Studies Program, Syracuse University

  This is a remarkable, important, brilliantly written book. For decades, people of color on the autism spectrum were overlooked by the medical establishment. In telling his own story with candor and grace, Prahlad not only delivers one of the most detailed accounts of being autistic to date, he relates the epic journey of a generation from the years following the end of slavery through the social upheavals of the late 20th Century. The passages of the book describing Prahlad’s synaesthetic experience of the world are so vivid and intense they will haunt your dreams.

  —Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

  Anand Prahlad recounts a life story that has never been told before. He takes the reader on a compelling journey from rural Virginia, to the San Francisco bay area’s counter culture to a Midwestern college town. It is also an inward journey charting a consciousness with a compelling combination of dreamy lyricism and unflinching precision. The Secret Life of a Black Aspie fills a gap in the growing cannon of disability memoir, broadening our understanding of race, gender and neurodiversity. It is hard to put down and impossible to forget.

  —Georgina Kleege, UC Berkeley

  Author of Sight Unseen and Blind Rage: Letters to Helen Keller.

  The Secret Life of a Black Aspie

  A Memoir

  ANAND PRAHLAD

  Text © 2017 University of Alaska Press

  Published by

  University of Alaska Press

  P.O. Box 756240

  Fairbanks, AK 99775-6240

  Cover design and interior layout by Jen Gunderson, fiveninetydesign.com.

  Cover art adapted from Wanderlust Wonderland, Collage on canvas, 2008, by Krista Franklin, www.kristafranklin.com.

  Library of Congress Cataloging in Publication Data

  Names: Prahlad, Anand, author.

  Title: The secret life of a black Aspie : a memoir / Anand Prahlad.

  Description: Fairbanks, AK : University of, 2017. | Includes bibliographical references and index.

  Identifiers: LCCN 2016025136 (print) | LCCN 2016038645 (ebook) | ISBN 9781602233218 (pbk. : alk. paper) | ISBN 9781602233225 ()

  Subjects: LCSH: Prahlad, Anand, Mental health. | Asperger’s syndromePatientsBiography. | Asperger’s syndromePatientsFamily relationships. | Husband and wifeBiography.

  Classification: LCC RC553.A88 P73 2017 (print) | LCC RC553.A88 (ebook) | DDC 616.85/88320092 [B] dc23

  LC record available at https://lccn.loc.gov/2016025136

  “Without positive obsession, there is nothing at all.”

  Octavia Butler, Parable of the Talents

  For Ruby, Jeremiah, Lizzy, and Beulah. For my children and my children’s children.

  And for my wife, Karen, without whom this book could not have been written.

  A special thanks to the University of Missouri Research Board for a fellowship that gave me time to work on the book. Grateful acknowledgment to the journals, Fifth Wednesday, Water~Stone Review, and The Journal of American Folklore, which published earlier versions of “Growing up with the Spirits,” and “Born with the Spirits.”

  Introduction: Remembering

  Born with the Spirits

  Growing Up with the Spirits

  The Pillows Are Crying

  The Big Yellow Bus

  Going to the Moon

  Cool

  The White Castle

  The Big Yellow House

  The Purple Time

  I Think I Do

  Gray Concrete

  All the Green and Blue

  Professor in the Silver Town

  Making Lunch

  Introduction: Remembering

  Don’t judge a book by its cover.

  I first suspected that I might have autism spectrum disorder (ASD) when I read about autism as a university student. I was nineteen. I didn’t get an official diagnosis, though, until I was fifty-seven. After decades in denial, I sought a diagnosis because I was finally willing to deal with it, because dealing with it seemed to be the only chance to save my relationship with my partner, Karen, now my wife. We sat in a quiet office as the therapist went over my test results and what they meant. I had high functioning ASD. Her voice was soft and soothing. She got me to the core, like no one ever had, and for a minute I was so happy I started crying. The feeling of being understood was so redeeming. But a second later, I was terrified. I started falling and landed at the bottom of a well. My tears turned the water in the well salty, and so I was thirsty but didn’t have anything to drink. I folded inward, like a blossom that closes at night, and couldn’t speak, and couldn’t scream for help.

  My whole life I had thought that I was from another planet, that someday the ship would come for me and take me home. I believed that most other people were insane and that I was one of the rare sane ones. Who else but crazy people would make a world that moved too fast to keep up? What sane people would make a world that left so little room for quiet, for thinking, for kindness, beauty, or grace? In what sane world would there have been slavery?

  The feeling that I was from another planet gave life meaning. There was a reason for my suffering. There was a reason why I never really fit in. For why I so seldom had any feelings for many of the things people usually have feelings about. There was a reason why I couldn’t remember things. Why everything around me seemed to be a noisy blur, moving too fast to catch hold of. Eyes and ears on my planet were different. They were suited to slower speeds. To lower pitches. I would be here on earth for a while and then I would go home. It would always be today the entire time I lived here, but that would change when I got home. I would remember yesterday then, and I would imagine tomorrow.

  As part of my therapy, I started reading about autism. But the diagnosis and the books took away the two main things that helped me to function. They took away the hope that the ship would be coming, and they took away the pride I felt for being one of the few sane ones. Some of the things I read made me feel even more like a creature than I already did. Some of the words were so cold and clinical. The books described creatures that looked human but were something else. They often had limited capacity for empathy. It was questionable whether they were capable of love. They had problems with time perception. They were hypersensitive and prone to meltdowns, usually caused by overstimulation. They were often disassociated from the social world. They needed routine; disruptions could cause severe problems with their functioning. They processed slowly and were sometimes mistaken for mentally defective. I didn’t want those things to be true about me, but a lot of them were. And the books didn’t talk about our gifts, the special things we can do that others usually can’t. They didn’t talk about the special light we bring.

  Always feeling disconnected is one of the hardest things about my Asperger’s. It’s like when a white man who has never known a black person puts his arm around a black coworker and says something like, “Hey, buddy, you gonna come and hang out with the guys tonight? We’re going to knock down a few and watch the game.” He’s trying to be friendly. He wants to feel like they’re the same. But they’re not. Most things people say to me feel like that. People talk to me and they assume I’m hearing and understanding their words. But usually I’
m listening to their colors. I’m seeing them. I’m feeling their temperatures. I’m smelling their scents. And whatever I see or smell or touch, I taste. Even if I don’t want to. I have what they call “sensory integration dysfunction,” or synesthesia. My senses are all mixed together. So, when I’m talking to people, I’m tasting them on my tongue. I learned to tell by my senses what people want, but that’s different from knowing what they mean. Sometimes I desperately want to feel connected, but I just don’t. Other times, I don’t even notice that I’m not connected. I’m in my own bubble, and other people are in theirs.

  We’re using the same words, but we’re speaking different languages. If people were talking about movies, for example, and I said I didn’t like scary movies, someone would try to convince me that scary movies weren’t so bad. They would think that we were talking about the same thing, a little thing, relatively speaking. But not many things are little to me, and if they were, I wouldn’t bother talking about them. I don’t know how to chitchat for more than three sentences, or around forty words. I don’t get the point of it.

  If I said I couldn’t watch scary movies, I would mean I couldn’t watch them because a girl would step out of them with blood on her dress. And unless I buried the dress in a certain kind of spot, I wouldn’t be able to sleep on the right pillow. And if I didn’t sleep on the right pillow, I would have the wrong person’s dreams. And if I had the wrong person’s dreams, I would wake up as the wrong person and do the wrong things, and it would take a long time to get the right person back. The right person would be wandering in purgatory for who knows how long while their life was falling apart. But the scary movie is only an example. It’s like that with most conversations. What I mean is a domino in a long row of other dominoes that no one else can see or imagine.

  It seems like most people’s minds are telling them things to connect with other people’s minds. But my mind is telling me things that make it hard to connect. My mind is telling me things that take me away from other people’s worlds. Like if somebody is looking serious and they say something like “That was really sad what happened to that person” or “I think this requires serious consideration,” do you know what my mind would tell me? It would tell me, “I wish I had some cherry jelly, like the kind in the little containers in restaurants. The kind you peel the top paper off. And the underside is silver. And you put it on your biscuits.” It would tell me that because something in the person’s voice was the color of cherry and I could taste it, but the taste was incomplete. “I wish I had some cherry jelly on a buttery bite of corn bread. That would be so good.”

  When it dawned on me in college that I might be on the spectrum, I decided that I wanted to work with autistic children. The urge to help out has always been in my bones. Maybe it’s my way of paying the fare for being allowed to live. For not being locked in the basement or the closet. But when I tried working with kids on the spectrum, I quickly recognized I was too unstable. I fell apart too easily and spent most of my energy just trying to hold myself together. I couldn’t be around severely autistic kids. Their screaming tore away the thin veils surrounding me, the veils that allow me to keep my form, to avoid turning into vapor. Being around others on the spectrum left me feeling naked and helpless, as frightened as if the world had fallen apart. When I stood in a room of six children on the spectrum, I fell into their worlds, like falling endlessly in a dream. All of the sanctuary in how things stay fixed in the neurologically typical world vanished. I floated like a fleck of yellow in a deep blue sea. I wanted to run, to find my way back to safety.

  After that brief spell in college, I tried to forget about autism, and I tried not to let anyone else know. I tried not to let myself know. I never mentioned my suspicion to anyone, and tried hard when I was around people not to show any of the signs. The majority of people are not very nice to the disabled. They often dismiss us and imagine we don’t exist. They build the world in ways that don’t consider our existence. So fast! So sense-singular. I guess they feel like we’re the weaknesses of the species, the worthless. The embarrassments. The signs of imperfection. The nightmares of their so-called beauty.

  The old people I grew up around used to tell me stories about the plantation. Some of the stories about slaves make me think about people with disabilities. When the slaves were freed, the slave owners gathered them and said, “Y’all niggers is ‘free’ now. You are on your own now. You’ll have to root, hog, or die.” It’s similar for people with disabilities. We have to root, hog, or die. Many people seem so agitated that some of us can’t see what they see, or hear what they hear, or do things the way they do them. I’ve watched. They sometimes whisper and chuckle, even to me, not knowing who I am. Or they scowl or grimace, or their faces distort with pity. It was much worse when I was growing up, and when I was living most of my life, than it is now. That’s why I’ve spent my life hiding my disorder, even being in denial. I have too much pride.

  But now I want to talk about it. I want to tell you what it’s been like, growing up black, in the South, with ASD, and trying to make it in life. As I’ve gotten older, I’ve started to function less effectively. I’ve become more like I was as a child. My personas and my filters have started breaking down. When I’m sitting in a restaurant, for instance, I can’t stop hearing all of the conversations around me, or the patterns of silverware striking glasses and plates. The rhythm of the fans, cool or warm air blowing from ceiling or floor grates. It’s that way everywhere. And so I hear only bits and pieces of what the people I’m sitting with are saying. Mainly, I watch their faces and their postures, and listen to the stories their bodies are telling, and add details to them with my imagination.

  I’ll try to describe having Asperger’s and being black to you, as best I can, by telling you stories about my life. Being black and coming from the South are no small things. Nor is being older. Most people think of children when they think of autism. They think of people who can barely function enough to feed themselves or put on their clothes. They think of white, middle-class parents in suburbs or cities who can help their children. Most people have those pictures of autism because those are the ones on television, in magazines, and other places where there are books and articles. The pictures help to educate people. They tell them how to have the right amounts of sympathy and interest. They sensitize people. They tell them how to care about people on the spectrum and how to care about the words “autism” or “Asperger’s syndrome.”

  The biggest thing about being an older black man with Asperger’s is that the three things don’t go together in most people’s minds. People don’t have any pictures for it. It’s like a woman with a beard or a man with breasts. Most of the pictures people have tell them that a black man equals toughness. Coolness. Anger. Stupidity. Ridiculousness. Brutishness. Pictures tell people that we don’t have feelings, or that if we have them, they aren’t as developed or as sensitive as those of white people. If you poke us with a sharp object, we won’t feel it until it breaks the skin. And not much even then. Our bodies just don’t fit with nice things. With sophistication or goodness. They fit with dirt. They fit with dark streets and soulless deaths.

  No book or television show or movie has had characters like me. So people can’t imagine me. They don’t think that I exist. Even many of my friends. Therapists. People on the street. They don’t know what to feel or in what amounts to have each feeling. Even black people have this problem. When I’ve told black people that I have autism, or Asperger’s syndrome, they’ve often said, “No you don’t.” Or “Nigger, ain’t nothing wrong with you.” Or “All that shit is just in your mind.” Or “You just lazy, that’s all.”

  They think that what you see is what you get. That because I can hold a job, and do things that other people can do, I must be “normal.” I couldn’t have autism, first, because I’m not a child; second, because I’m black; and third, because I’m successful and can hold a job.

  A part of the reason I’ve been able to hide my au
tism so well is because other people can’t, or haven’t wanted to, see it. It’s an invisible disability. People don’t like imagining difference, and so, when they can, they see what they want to see. So being a black man is like an accidental sleight of hand. Many white people simply can’t see black people at all, much less see with the discernment it would take to notice Asperger’s. And many black people can’t believe in disabilities. They can’t believe in anything that would make our “race” seem vulnerable. They want us to be like warriors or conquering heroes. And for most of my life, Americans had no general awareness of neurological disorders. The words, ideas, or pictures for ASD just didn’t exist.

  Being black with autism, and especially growing up when I did, has meant double troubles. It’s meant that often I don’t know where one thing ends and the other thing begins. If I was among a group of white people and didn’t understand what was being said, was it because of Asperger’s or because of race? Usually it was both. Then, add on the fact that I grew up on a plantation, in a family where almost everyone had neurological disorders. In some ways, though, this combination has helped to save me. Although I was more eccentric than anyone else in my family, I was still familiar. I still made sense to them. They could understand some of my dysfunctions, because they had them to a lesser degree themselves. They very patiently taught me many simple things about how to get along. How to create a habit and live by it. How to deflect sounds. How to guess what people wanted. Some of those things were what had helped slaves to survive. How to make a mask. How to scream silently.

  Before I start telling you about my life, though, I should share with you a secret: I don’t remember most of it. I don’t remember most experiences I’ve had or most of the people I’ve met. I don’t remember conversations I’ve had or the names of places I’ve been. I always feel like I just got here today. I always feel like I’m walking in a snowstorm and my tracks are being quickly covered over. My memory doesn’t stick to things. It sticks to colors, and temperatures, and tastes. I remember mostly sensory details and ideas, because those are the things I experience as most real.