Doug was my voice.
He was my heart.
I was his mind.
He was brave and brash.
I figured things out.
I held him when he took his life.
Doug was my voice.
He was my heart.
I was his mind.
He was brave and brash.
I figured things out.
I held him when he took his life.
My mother died six weeks ago. A mother’s death isn’t uncommon. It is an event experienced — with the relatively predictable lifespans from today’s healthcare — by most humans. This population now includes eighty percent of my siblings.
In my first Living Amongst Humans piece, “Boundary Issues” written in 2011, I spoke of my life being the end of an unbroken chain of generations lasting nearly four billion years. It was remarkable that I — childless — would be the one to break that sequence, many millions of ancestors long. Living Amongst Humans was to be the tale of the last link in the chain.
With my mother’s death, I am left to consider how the connection to the generation preceding me has changed. She lives on in my genes, surely, but more significantly in my mind. Studies show the surprisingly little influence parental nurture has on a child’s personality. I won’t dispute that because it is irrelevant to how my mother shaped my life. She gave me tools, and the guidance to use them, to carve a lifetime of meaning.
Jim, I just finished reading “Letting Him Out.” I’m sorry you’ve suffered for decades, protecting that little autistic boy inside you. But I’m glad you’re considering letting him out of that walled prison you’ve kept him in all these years. I like knowing the real you.
Thank you, but I don’t get enough credit for how well I’ve done without him. I’ve accomplished a lot — so much that people don’t recognize the sacrifices I’ve made. They can’t see my deep scars. It is so tiring, still. I’ve had to be strong. I’ve had to protect that little autistic boy.
I wrote a year and a half ago how I wanted to let him out, but I’m afraid he won’t be strong enough to survive. I’m afraid I won’t be strong enough for the both of us.
Which is the greater pain?
I have cursed myself, as a matter of survival. As a child, walking past a table of classmates in the cafeteria, and hearing their mocking laughter, I avoided emotional collapse only by — paradoxically — supporting the claims of my tormentors. I distracted myself from their words by doubling down with internal, vile self-indictment. Somehow my uncontrollable mind screams was able to mask the external cruelty. Stumbling in the din, I scarcely felt the chairs or people I stumbled into, as I sought escape.
This was typical. To recover from any childhood social ineptitude, from bungled interactions, from awkward moments of clear otherness, I would repeat a self-abusive phrase so foul, even as an adult I have not dared reveal it. I lived my youth with this brutal, effective and uncontrollable method to cut out the rest of the world and distract myself from the shame-filled pain of social ignorance.
When I published Letting Him Out on May 30, 2015, I suspected I had a winner. Writing the piece is what drove me to go public with Living Amongst Humans. It was a raw exposition of the arc of my autistic existence over decades, with a well-disguised metaphor that I revealed with dramatic effect. I expected people would be moved. Still, I was surprised when, in a very short period of time, many thousands read it. I reveled in comments such as, “I cried for an hour after reading this.” and, “Breathtaking piece really felt how life would be for my Autistic boy as he grows to an adult,” and even, “This is the most powerful thing I have ever read.” And then, on August 17 I read David M. Perry’s tweet: “An amazing essay on the struggle of passing.”
Passing? I was passing? That hurt. It felt like criticism, even if I didn’t understand “passing” in that context. I wasn’t trying to pass in my essay. I was trying to stay alive. So I researched passing. I read about it on Wikipedia (where else to go first?). Every word stabbed. Reading further articles written by autistic people confirmed my original reaction. Passing was not good. Passing meant the suppression of natural autistic tendencies to fit in.
As a child, I needed three skills to effectively communicate with humans. First was the physical capacity to vocalize. Check. The next requirement was a reasonable vocabulary. Roger. The last ability was putting my voice together with the right language to express myself. Two out of three ain’t bad.
I struggled to assemble words to convey meaning to others. It was easier to keep my mouth closed and suffer the occasional, “Why is Jim so quiet?” — uttered within earshot by well-meaning, but pain-inflicting, humans — than to give them more evidence to fuel their theories by trying, and failing, to speak. Instead, I smiled, enhancing my reputation as a happy silent child, as my frustration grew.
My younger brother Doug was my voice to the outside world. We shared a bedroom and a mind — as close to twins as siblings separated by two years could be. Beyond the home, we clung together. He knew what I needed. He spoke my thoughts.
The use of the term “Autism Spectrum” is misleading. It gives the impression that there is a single scale by which you can classify every Autistic person. The Autism Spectrum was created for diagnosis, which, in many cases, is valuable. I myself have benefited from it. But there is a danger in using this oversimplification, especially when it spreads beyond the bounds of diagnosis. It leaves the impression that every Autistic person can be characterized by where they stand — a single position — on this spectrum. It makes Autism a single thing. It allows for the question, “How Autistic are you?”
There are so many dimensions to Autistic individuals that a single spectrum cannot contain them. There are people who are left-handed and Autistic. There are musicians, swimmers, chess-players, politicians, mountain climbers, CEOs, stockbrokers, cowboys, programmers, fashion models, polar explorers and so much more.
This infographic delves into the disorder of the Autistic Spectrum.
Huillo is a lucky boy. Luis is a lucky dad. And I am lucky my words brought them to me. #todossomoshuillo
I don’t typically post videos, nor content from others, but I was moved by a recent email from Luis Vazquez. Luis introduced me to his son Huillo through this video, while telling me he found my infographics helpful. At the time, I replied and posted it to the Living Amongst Humans Facebook page and similarly on Twitter. Today I decided to copy it to the main Living Amongst Humans site.
Coldplay shared the video with their almost 17 million Twitter followers, along with the caption: “This kind of thing makes it all worthwhile.” The Washington Post covered it. Clearly, I am not going to appreciably increase this video’s reach, but it is worthwhile — personally, at least — to capture the event.
Humans can mistake autistic people having difficulty reading or expressing emotions as not having emotions. Let this video put the lie to that.
I started writing here a year ago, unsure of the path it would take. I was exploring what it meant to communicate about autism, and my personal brand of it. Through this web site, with the associated social media it spilled onto, I contacted tens of thousands in a few months. These strangers were overwhelmingly kind. Nearly all the hundreds of comments were a delight to read and respond to. They were invariably on topic, mostly considerate, often thoughtful and generally complimentary.
I’ve learned about humans in these interactions. I’ve learned about myself by writing these pieces. Also, with all due modesty — based on their statements — I’ve enriched others with what I’ve written. For these reasons, and anticipating at least more of the same, I plan to continue. But it has been a while since I’ve added anything new. I feel an explanation is necessary, at least to those who have graced me with their willingness to wait for more.
Autism is often looked at as an affliction—something that is acquired, as a disease would be. But autism isn’t something that you catch, like influenza. Rather, it is something that you are, like tall or left-handed or female. We need to stop looking for poisons in the environment, or something that is eaten or injected, as the cause for autism. Autism isn’t something that can be washed away or flushed out of a person. We need to cherish autistic people for the unique individuals they are, with a different type of brain. We can’t cure it away. We shouldn’t want to. Autism is forever. Autistic children come from the love of two people, not from poison.
This infographic identifies the root cause of all these autistic people that are showing up these days.
Twenty years ago, I worked at a small company with two Mikes. One Monday, Mike A and Mike B were walking down the hall together, each dressed in the same shade of khakis and a light blue oxford shirt. As they drew close. I joked about their uniform appearance. Mike B replied, “The real question is, are we wearing the same color underwear?” Before I could think of a response, he added, “It’s a trick question. I’m not wearing any.”
That is the funniest thing I have heard in my life.
Ever since, when it strikes me, I repeat those words—sometimes for hours—delighting in each iteration. “It’s a trick question. I’m not wearing any.” When with dear friends, they appreciate my glee and suffer my repetition. The person who suffers most is my wife Karen, my closest confidante. With her, I can be my unadulterated, ridiculous self. With her, I can be purely autistic while being accepted and cherished.
But it was not always so.
The ubiquitous symbol of autism, proudly and compassionately displayed by parents, caretakers and professionals, is the multi-colored jigsaw puzzle. It is an apt symbol from that point of view. Some of these people, though, as well as a much larger percentage of autistic individuals, believe the symbol objectifies a class of people. It associates them with an illness, in the same sense that a pink ribbon does so regarding breast cancer. Autism is, in some sense, and to varying degrees, a disability. Autism is much more than that, though. It is a difference—with challenges, delights and surprises as much as any other human variation, especially those involving the most complex object we know about in the universe: the human mind.
This new infographic makes clear to the world of humans that there is much more to autism than can be captured by a puzzling symbol.
It was 1971. It was nearly four decades before I knew I was autistic. It was 25 years before soccer moms. It was the year, on one particular day, I discovered magic inside my brain.
I had orchestra rehearsal that day. I played string bass. Both the bass—quite a bit larger than my slight thirteen year old body—and I needed a ride home when practice was over late in the afternoon. We both made our way to the doorway of the school, to wait for my mother to pick us up and drive us two and a half miles in time for one of us to have dinner.
My mother had six children. Keeping up with them, even keeping track of them, was quite a challenge. This time, as was typical, the other orchestra kids had already been picked up. The staff had locked up the school for the day. A cold, rainy evening was settling in. In this age there was no handheld wizardry to occupy me. It was too dark, too wet, to read. So I retreated into the only truly comfortable place I have ever known: my mind.
I hate shirts. I have a herniated disc in my neck and sciatica in my right buttock. Both are constant sources of pain. I would gladly live with either for the rest of my life if I could only eliminate the hours I spend each week, trying on different shirts until I find one that doesn’t make me scream inside my head. My torso is extraordinarily sensitive to touch. The slightest breeze makes me flinch. Cloth that doesn’t feel right, doesn’t lie right, causes real mental pain.
It’s hard to explain this pain to humans, but I’ll try. Imagine being totally exposed from the waist up and stepping inside a walk-in freezer, standing still for 15 minutes and willing yourself not to shiver. Or instead of walking into the freezer, consider what it would feel like to take a cheese grater to your chest, looking down in amazement to see your skin shredded yet somehow not bleeding. Now imagine both of those together. Every day.
Words are important to humans. People can be offended by words alone. Humans especially value names. The quickest way to insult a person is by intentionally using the wrong name, or a diminutive form, or mispronouncing it. The same applies to names for groups of people. Humans are expert at grouping populations into specific named collections (see Boundary Issues) and then defending the names of their own group while finding inappropriate names for others.
I have difficulty being offended by words or misused names. I depend much more on a person’s actions than words, but I have learned through a lifetime of careful observation that humans are different.
My smartphone is smarter than I am. It’s brain is broken up into eight processing circuits. Six of the processors are for general computing—making phone calls, playing games, tweeting and all the other smartphone wizardry we take for granted. There are two special processors, though, which are a different. One circuit is a little bit of genius. It is a natural language processor. It is always on, always listening, always ready to understand speech. It allows me to talk to the phone without touching it.
Humans have wiring in their brains—natural social processors—that interpret complex social interplay. Without conscious thought, this special purpose circuitry subtly decodes the meaning of numerous social cues: the choice of words (casual or formal, welcoming or off-putting), changes in tone (ending a sentence higher to welcome collaboration, or lower to indicate authority), the accompanying facial expressions (smiles, frowns, brow-furrowing, cocked eyebrows), gestures (folded arms, outstretched hands, shoulder brushing), body positioning (angling towards the welcomed, or away from the shunned), and many more. This processor is always on, always ready to help humans understand each other’s behavior.
I am wrong 70% of the time. Don’t ask me how I know it is 70%. I recognize numbers the way you recognize faces—a matter of familiarity and unconscious association, not calculation. I have a holistic understanding that 70% of all the decisions I make are incorrect. Even when I am not paying attention, my brain is keeping track. Just as you might say, “Oh, that’s Arnold. He changed his eyeglasses.” I will tell myself, “Yes, 70% feels right.”
I wouldn’t have had much success in life if I failed at 70% of everything I attempted. What I needed was a mechanism to overcome my intrinsic tendency to make the wrong call.
The autistic brain is not malformed nor diseased. It isn’t something to be pitied or corrected. Our brains just happen to be different from yours. That doesn’t make the autistic brain wrong. It does, however, make it somewhat incompatible with a world, a society, constructed by human brains.
Is it any wonder that the autistic brain–and the person containing it–can sometimes struggle? We’re plaid, trying to exist in a striped world. We clash a little. Both patterns work. They’re just slightly incompatible. And there’s a lot more of you guys.
When you go out looking for a chicken and you find a duck, you wouldn’t say, “Well, that’s an odd looking chicken. Poor thing.” It’s not wrong. It’s just not what you were expecting.
Embrace the duck. Listen for the quacking. It can be a nice change from all the clucking going on in the human hen house. Not only that. We may not lay eggs as efficiently as you. But man, can we swim!
I had a boy nobody knew about: a feeble autistic child. I was barely an adult myself when I put him away. I had no options. And I told no one what I did.
My boy avoided people. He would slip off to the basement, hiding in the narrow space behind the furnace, comforted by solitude and constriction. He barely ate. He rarely spoke. I knew my rail thin, silent child was not made for this world. To protect him — from himself and others — I found a place for him behind thick walls.
He was isolated, but safeguarded. It was the best solution I could come up with.
The years passed while I kept my dark secret. I would lie awake at night, picturing the young boy,
If you’re autistic, talking to humans is a bit of a magic trick.
When I was a child, I had yet to learn that trick. In fact, I didn’t yet know that I was autistic. Talking to humans was a mystery to me, as was so much else in life. I was a frustrated quiet child.
If I needed to something to drink, I didn’t know how to ask for it. So I remained silent and thirsty. If I was lucky, my younger brother was with me. He would know what I needed and ask for me.
When I was sick during the night, I knew I needed help from my mother. I went to my parents’ closed bedroom door and froze. I didn’t know what the next step was. I tried every few minutes to knock, or to speak, each time backing off. Tired and sick, I collapsed to the floor and slept the rest of the night curled up at the foot of the door.