Autism Without Fear: The Last Time I Panicked

John Pretty On Top, 1939-2020 (Courtesy of Big Horn County News)

We don’t use the word “coward” much anymore. Historically, the word’s role has been that of a weapon, one used primarily on males to “build character” through negative reinforcement; to shame them into a gender stereotype that is often painful, if not for some, traumatic to achieve.

The word has also been a tool used on those with behavioral differences, and non-apparent disabilities, as a punishment for their perceived inadequacies.

Today, fewer people seem to want to use the word. We know so much more about why our emotions can cause us to freeze, to run away, to fail to come to the aid of a loved one, to desert, or to lie. And while explanation is still not justification, our increased knowledge of executive functioning, emotional regulation, and the long-term damage lurking within all negative reinforcements…has granted us infinitely more humane clarification about why “cowardice” occurs.

But the growth hasn’t been without a casualty—that being the desire to be brave. Being brave (perhaps the contradictory—“positive”—reinforcement) is simply not regarded with importance anymore. I feel as though my sons’ generation thinks of it as a labor-intensive “sucker’s game” that yields little reward, and I’m more than bothered by this.

But my disappointment might be revealed as the result of baggage, rather than any wisdom. I am a male, however autistic, who needs to believe there was value, and reason, in going through that painful process myself. And maybe discarding courage as a requisite ingredient for a productive human being …maybe that’s progress. Maybe my grumpy  “Kids today!…” complaints are a sign of my oncoming irrelevance.

One Prophetic Car Conversation

It was strange that he was worried. My younger son, the star athlete (thanks to a gene pool I married into, not mine), had injured his hand. He wants to be a pro soccer goalie, has played hockey for most of his life, and so his first 15 years of life have made him no stranger to injuries. But despite amazing everyone around him all his life with his high pain threshold and toughness, his concerns over one of the most minor setbacks he’s ever had seemed uncharacteristic.

We were in the car, discussing the mental mechanics associated with the life he has chosen. After the reassurances that his career was not impacted, I tried to explain how (what we refer to in our house as) “messy head” works on us, hoping to deconstruct the human instincts that arrive uninvited, and that can cause such harm and unnecessary shame.

I, of course, parlayed my usual platitudes—the overtold stories and stock phrases—that he and his brother, if not also my individual clients, have heard until driven into the ground. Amongst these platitudes are parables about how fear and anxiety don’t go away, but that we learn to handle them: How wildfires shouldn’t be put out OR allowed to roam free and instead managed; that sometimes it’s only when you become sick to death of being afraid that you stop being so afraid; the wave won’t go away but you can learn to surf it; anxiety won’t leave, but you can cut its balls off…that sort of stuff (I have to find some new ones). Always, the Disney movies tell us to face our fears in the plural; indicating we have to address them all one by one. But what if we have dozens? That’s a LOT of work to do! And what if, let’s say (using my favorite, personal example) skydiving actually doesn’t rid of you of your fear of heights?

The question came up in the car, of when was the last time I, his father, panicked.

As an individual with autism I am no stranger to emotional dysregulation. But my cognitive knowledge of it, as with anything, helps me to feel more in control of it. I’ve also been, by design or accident, the massive exception as an autistic, given the more dramatic opportunities I’ve had with stereotypical male “cowboy culture;” independence, foreign conflict, street life, even gunfire—that all fed, and still feed my unwavering belief in those platitudes.

Not coincidentally I am also surrounded every day by the iconography of my father, a Marine Corps helicopter pilot that was killed in Vietnam when I was two. Over the years, relatives and his friends have instilled in me the belief that while he and I might have had many arguments over politics and religion, he loved me unconditionally. Perhaps in return, I have always wanted to be as brave as him. Whether what you believe in is right or wrong…who today (with something to lose) is really willing to die for what they believe in?

In the car, I answered my son’s challenge:

In 1995 I ran out of a Native American sweat ceremony because it was too hot for me.”

Son: (Intense laughter) “Wha…?

(Mutual laughter for about ten seconds.)

“Ok. So, I spent a couple of weeks on the Crow reservation in Montana doing some research. Somehow I lucked out, and a guy named John Pretty on Top took me under his wing to show me around. John was unreal. Not only was he the religious leader there, he was often asked by other First Nations to represent them at various religious conferences. Anyway, one day he said that he and I were going to do a sweat together, which is when you go into a hut and pour water onto these incredibly hot rocks. It’s kind of a purification ritual. It becomes so hot inside that your pores just open up like they never have before and…it’s painful. It’s even more painful in the Crow version, which John was really proud of. He really dug in to tell me how their sweat was the hottest compared to other tribes, how “sweats” were more than the tourist attractions he felt they’d become…(laughing) John was an ex-Marine, like your grandfather. Pain was just his way of communicating with his God, or Gods.

“So what happened?”

“I started to feel it first in the tops of my ears. It was just heat like I’d never experienced before. The pain, I think, wasn’t anywhere near as panic-inducing as was the newness of it—either a confidence issue or the lack of “How far is this gonna go?” kind of thing. And I just uttered the words “too hot too hot” and in a rush I crawled out of the hut as fast as I could, just minutes after he’d begun the process. The real heat hadn’t even started.”

He smiled, enjoying the image, if only in mind, of his dad freaking out.

“Did you just leave?”

“No. John actually got me back in. And we finished the sweat.”

As I continued to drive, my son Googled John’s name.

“Dad…I think he just died.”

1995

My contact at the Crow Agency tribal offices was acting more shocked than happy for me.

“I have some good news for you. John Pretty on Top wants to meet with you.” The name meant nothing to me, but clearly not to him. So I said a hearty, “thank you.”

I was 30; four years away from hearing the word “Asperger,” knowing nothing about autism, but more importantly, one year away from fatherhood. John, the same age then as I am now, was stocky, built, and imposing when he ordered me into his pickup.

With mild but transparent cynicism, he asked: “What’s your research?”

I was a playwright back then, and I was turning what was my graduate thesis into a play. I’d spent close to five months living out of my car in 1988 for my MFA, pretending to be an 8th-rate Jack Kerouac, working odd jobs to pay for food and gas. There’d been a lot of bars, and (I’m ashamed to say) more than a few bar fights in the south, but feelings of confidence and independence like I have never known before, or since.

There’d also been a relationship on that trip with a First Nation girl. We traveled together for a couple of weeks after I met her picking cotton. She’d been a runaway, and she’d adopted the Spanish accents of the migrants she worked with, and was passionate about the movie, “Breakfast at Tiffany’s,” and the film’s main character of Holly Go-Lightly, a charming Manhattan sex worker to the upper-classes. “Suzy” had very complicated feelings of disappointment about the native culture she’d left. But she also hated Christians more than anyone I’ve ever met. In the end, I was too privileged for her.

She wasn’t Crow, but I was fictionalizing a lot in the play anyway, and I’d been curious about the Crow nation and had intended to merge the Crow culture and the girl I knew into one character.

***

The “People of the Black Bird,” long ago mistakenly dubbed “Crow,” by whites, had allowed the churches into their reservation, and economically, when I visited, were healthier because of it. Naturally, though, widespread conversion to Christianity was the unspoken, return fee (and I don’t in any way mean that as a criticism, or an endorsement). Next door in South Dakota, the Pine Ridge Sioux reservation retained traditional ways and rejected church influence. Comparatively, Pine Ridge was destitute, and often has been cited as the economically poorest community in the entire U.S.

Also, and maybe even more delicately, the Crow had been scouts for General George Custer, who before his death at the Battle of the Little Bighorn had successfully waged war on other tribes. Two Crow nurses on the reservation had told me:

“Oh, when we’d play away basketball games? We were teased so bad about being ‘traitors.’”

“My brother was beaten up over it by nearby Cheyenne kids.”

Grownup heads had always prevailed. But back then the stigma was still “a thing,” however minor, if you were Crow.

Plenty Coups’ Dream

In 1859, as the Indian Wars were starting to escalate to the horrors that transpired, future Crow Chieftain, Plenty Coups (sometimes spelled “Coos”), had a dream. He was only 11, when in this vision he saw buffalo hiding in holes, and all the trees blown down except for one. And when the buffalo came out of the holes they began to transform into hideous, unrecognizable creatures of different colors and shapes.

Chief Plenty Coups, 1848-1932 (File photo)

When Plenty Coups shared this dream with tribal elders they collectively deduced that the dream meant the following: Whites would kill everything except the lone tree standing, which to them meant the People of the Black Bird…but only if they cooperated. Since whites were more interested in fighting their neighboring tribes, like the Cheyenne and Lakota—who were also the enemies of the People of the Black Bird—the decision was made. The People of the Black Bird would work with whites.

In 1876, the same year as the Little Bighorn, the People of the Black Bird anointed Plenty Coups as Chief. He was very young for a tribal leader, but he’d been honored so because of what a fierce fighter he was, and also how eloquent he was (“Education is your most powerful weapon. With education, you are the white man’s equal; without education, you are his victim”).

God(s)

John took me to a picnic held by a community organization. We talked. I could tell he didn’t care much about my research, or my play. But his lack of enthusiasm wasn’t, as is often, due to my spectrum behavioral differences (at the time, I just knew people found me weird). A very proud ex-Marine himself, he was just much more interested in my father, and of the fact that I had quit drinking just four years earlier. Both factors, to him, epitomized potential.

Behind us, a speaker mentioned “God.”

“John, whose God is he talking about? The Christian God or a native God?”

He got right in my face, nose to my nose. “Both!

For the next day or so we drove around the reservation. He introduced me to many friends and relatives, and at one point John dropped me off with a family member who was struggling to quit drinking, implying that maybe I could help deter this person. I don’t think I did.

And the next night, after another day of introductions and talks, he told me “I know what you need. You and I are going to do a sweat together.

The next morning I drove to his house to leave my rental car there. His wife greeted me laughing.

“You’re gonna do a sweat with John? Are you nuts?”

We drove together in his truck. He talked about what was important to him. I listened. In doing so, I confirmed my suspicions that he was going to do the sweat  with me for my father.

John

John’s traditional name was “Alaashoonnahkush” and he was 17 when he enlisted in the Marines. He was a firm believer in the power of the sun dance, the excruciatingly painful purification ritual where (among other things) rawhide hooks are pierced into the chest, and then attached by rope to, and pulled, from the tribal pole.* Two years earlier, at a 1993 conference of First Nations held in Canada, a near-unanimous vote came down banning non-indigenous people from participating in, or even attending the Sun Dance.

John believed equally in the spiritual power of the sweat. Before the sweat ceremony, people gave John money, but also traditional items such as blankets and tobacco, and only when John was in the most pain would he, as agreed, pray for the loved ones of his clients.

To pay the bills, John had done everything. He’d been a plumber, a cultural affairs official, he’d fought wildfires in the far west and Alaska, he’d been the giver of Indian names, a Big Horn County Commissioner, a cop…He was born into the “Ties That Bundle” Clan, and later became a member of the “Big Lodge” Clan. His mentor had been the famous medicine man, Tom Yellowtail, and it was Yellowtail who bestowed upon John the task of succeeding him. John was very proud of his own availability, that people didn’t “need an appointment to come and see me.”

He told me about meeting the Pope in 1986 at a religious conferences in Assisi, Italy; and how at this event John Paul II had confessed his “admiration” because “We’ve been trying to eliminate you people for some time.

From an article on the Assisi conference. The Chicago Tribune. October 28, 1986.

He also told me about his past drinking.

As memory serves, he had not seen combat during his Marine Corp tenure, but he asked about Dad’s. So I shared it with him, including the somewhat dramatic circumstances surrounding my father’s death.

I also steered the conversation into politics to clandestinely get a point in: Confessing that I was “as left as it gets,” I also conveyed my knowledge that all those ex-comrades and squad mates of my father’s whom I maintained contact with (and still do) held often polar opposite religious and political views than I. Yet because of their love for my dad—to a man—I knew they all would still throw themselves in front of a bus for me. I told John about how that changes you, and tempers your “values.”

That was my way of telling John that I was onto him, and that I really appreciated what he was doing.

A plains Indian sweat lodge roughly the size of John’s. File photo.

Simultaneously, John prepared the rocks, and me. To paraphrase his points: The Crow sweat is the hardest and the hottest. Men and women do not sweat together (though they do in almost all other tribes). Because it was my first time, I would be allowed to lie on my stomach until I was ready to sit cross-legged like him. If I felt pain I was to beat the aching areas with a straw brush. Right before, I copied John and smeared charcoal-covered hot water on my body. We then went in.

It was no “lodge.” His structure was small, the flat version of a medium-sized camping tent, with room for maybe six (max) and a roof that was as high only to one’s belly if you were standing. We had to enter on all fours through a flap in the material.

I believe he said a prayer, and then he poured the first ladleful onto the rocks. I soon felt the burning in the tops of my ears. To repeat: I finished the hour-long ritual later on, but the last time in my life that I panicked happened not too long after we started. As I told my son, the heat grew, and grew to levels I’d never known, and then I was uttering words like “Too hot, too hot!” before I scampered out in a fast crawl that felt as unforgiveable and humiliating a thing as I have ever done.

* Certain tribes conduct the Sun Dance without piercings

“Rosa Belle”

So often I wanted to share her with John. I felt I couldn’t, and didn’t, and I regret it.

Her name was “Rosa Belle.” But I doubt if that was her name at birth.

My great-great grandmother was probably a Northern Arapaho Indian. Her mother’s or grandmother’s name may have been Waa-Nibe, who died very young. I didn’t share her with John because I barely shared her with anybody.

For one thing, we as whites were, and to some degree are still encouraged not to bring up native ancestors unless the percentages of your blood line are high (like 25% or so). To do so portrays you—and most of the time, rightfully—as engaging in an attempt to alleviate white guilt. So we either keep it to ourselves or we misrepresent; maybe we try to turn our 5% into a 50% to justify, say, the “interpretive indigenous dance classes” we appropriate, seemingly out of respect; yet wherein we then dilute, and ultimately destroy indigenous cultures. That’s the standard way of looking at it, and it should be noted that as I write this I am trying to learn/appropriate Spanish guitar progressions.

But the Crow rez wasn’t the only research site that I had reached out to for my 1995 play. Among other indigenous sources, I also got to know some of the folks who ran a Powwow group in New York City, where I lived, and one participant, Rebecca, stayed for a long while after to speak with me.

She had asked directly if I had any native blood, so to her I confessed the existence of Rosa Belle, as well as my reluctance in sharing her with others. But Rebecca proceeded to tell me that “the percentage shame” was a tool that worked not for natives, but for whites; for the very unintentional or intentional eradication of Indian culture; the one that whites had initially wanted. It was a math question. Marginalized people will continue to breed with other peoples as well as whites. Therefore, the percentages for everyone, especially with globalization and the continued eradication of biases, will only decrease. There of course is a way in which indigenous bloodlines can continue—intense breeding. But marginalized people simply don’t have the money or the child-rearing energy for tons of kids, specifically because they are marginalized. Ergo, this “you’re not a real Indian unless you’re 25%” idea becomes an instrument of, and not a defender from, cultural genocide.

I was beyond stunned, and I am still too environmentally conditioned to publicly embrace the 6.25% of indigenous DNA I might have—even if I embrace Rose Belle, the person. But Rebecca’s logic was inescapable. I am and I feel mostly Irish-American (my DNA suggests 65-70%). But if Rosa Belle existed, both whites and Indians would like me to give her very little consideration, and I find that astounding. I get it that without the 25% I don’t deserve a share of casino income. But to censor so? What are we afraid of?

“Rosa Belle,” date unknown. Carley family photo.

Over the years I had heard a variety of dramatic rumors; that Rosa Belle for a time had been Kit Carson’s girlfriend; and that her later marriage to my great-great grandfather had been the result of rape. This particular rumor involved a judge ordering my male ancestor, her rapist, to marry her (as punishment to him). Another rumor said that one night, late in life, she disappeared—having run away, or been murdered in the vast Colorado plains where they lived. I gathered family to help in writing this article, and determined that all of the above is pretty much not true.

But there’s still so much in doubt. None of my cousins and I, for instance, knew of this woman until we were adults, yet we had been taught much about our direct line straight from Ireland in the 1840s. Why was she so proportionately erased from the oral history?

The three cousins (two firsts and a second) and an aunt, my Godmother (who serves as the keeper of family photos), all of whom I thought had some involvement or interest in the research that produced this ancestor, were not on the same page—though by no means were they, or I, at fault in our collective uncertainty. We were all just obeying the vague, disparate and differing fragments we’d been told.

  • One cousin who’d done some homework long ago believes that (like seemingly everyone on this side of my family), Rosa Belle struggled with alcohol. This cousin also felt that Rosa Belle had been a sex worker for a decent amount of her life.
  • A genealogical report confirms that she was my great-great grandmother (as my aunt and second cousin put forth), not the three “greats” that I’d earlier suspected. The report seems as if it was commissioned not to prove or disprove that she was Arapaho, but instead to prove or disprove the idea that we were descendants of Kit Carson (we are not).
  • The second cousin disputed the sex worker notion, and confesses that she is torn if this woman was First Nation at all. But that said, she conveyed that Rosa Belle’s funeral, attended by her father when he was 9, was held on a reservation. My second cousin herein admires what the report demonstrates in that my great-great grandfather was Rosa Belle’s second marriage. Abuse and beatings stemming from alcohol addiction caused her to file for divorce from the first, which was very hard for a woman to achieve back then.
  • My other first cousin, and my aunt, both lamented their inconclusiveness.

The frustrations we all experience with a lack of concrete evidence reveal that perhaps our line through my father was not nearly as fascinating as was the ambiguity of this line.

My evidence-lacking, irresponsibly-conveyed thoughts are thus:

  • Yes, we’re Irish-American. And like most Irish during the 1800s we were thought of as dirt. But in our particular family the rejection of origin had continued into the then-present day of when I was a child. I can remember asking an uncle, “Wait a minute…we’re Irish, right?” and being yelled at, “No! We’re Americans!” Our particular Irish line did not, as did most, migrate to the cities where others established Irish communities of plentiful and positive shared experience. Despite a history of rigid Catholicism, our family instead followed the protestant Scots into rural life where we farmed, and were probably forced to lie a lot about who we were.
  • If the stigma of being Irish was bad, then a bump in the road of our family tree that reveals a Native American ancestor? This might have been perceived as an indefensible stain to our DNA.
  • Furthermore, a former sex worker in a Catholic heritage, in the 1800s, sadly, might have demanded banishment from all memory.
  • Why would my Aunt Kathy have portraits of her amongst the trove of family photos she’s guarded for us? Trust me, our ancestors herein couldn’t afford “household help”…
  • Because of the lack of childhood documentation, Rosa Belle seems also a very possible product of “Indian schools” wherein native children were forever separated, forcibly, from their parents and placed into boarding schools that would try to make them more white at any cost; usually through intensive physical, emotional, and sexual abuse. At the end of their era, the over 60 schools that existed in the US caught wind of how they would be viewed, and most destroyed their records. One very famous, 25 year long Headmaster, Colonel Richard Pratt, lived by the motto, “Kill the Indian, Save the Man.”
  • Furthermore, at these schools they were given new, white names.

As an autistic, I get the influence herein of stigma. And as a result, Rosa Belle gets more of my thoughts than her percentage suggests. Yes, there’s probably some white guilt in there (frankly there are arguably six cultures in play here; none of which is allowed to feel good about itself). But it’s also because she—the person—simply requires it. After her passing she has experienced near-Stalinist erasure and spiritual exile.

Sometimes in guilt I click the “Two or More Races” options on forms asking for my race, and sometimes I don’t. I thought of Rosa Belle when I school consulted on the MHA Reservation in North Dakota, in my talks to consult with Standing Rock, or with First Nations communities in Quebec and Ontario. I also thought of her when my wonderful students at NYU shocked me last year with a bestowed nickname whose iconography was distinctly First Nation.

But in each instance I did not mention her. The only time I did was in an email I wrote a few years ago to both the Northern (Colorado) and Southern (Oklahoma) Arapaho communities, wherein I tried to offer my school consulting services. I wasn’t comfortable, nor confident in sharing Rosa Belle with them, but I made myself do so, and there was no answer.

There was also no answer months ago when I emailed, and then a month later called the same Crow tribal agency to convey my condolences on John’s passing, and to ask to talk to some of John’s relatives for this article. In 1995, the agency responded instantly to the requests of an unknown young playwright. But today, the tribal voicemail box is full. Calls and emails were not returned. Montana’s Indian Affairs office too, did not get back to me. Despite my now being infinitely more established as a writer of any kind, I got silence.

Part of it may be that over the years we have all learned that the expectation of a quickly returned call or email can resonate, culturally, as perhaps a very white aggression, however micro. But that can’t be all of it. Maybe part is COVID, maybe things have just happened in 26 years that I’ll never know because I’m a New York City-type.

I’m reminded of that young woman that I traveled with for a time in ‘88, and that I later turned into that character in my play. We laughed once, when she turned to me in a tender moment and said, “It’s nice to find someone to reject the values of your elders with.

“Hey Plenty Coups!…Here’s MY Dream”

I have no religion. But if there’s an afterlife, here’s how I think it works: No one goes to (what John’s wonderful obituary called) “the Other Side Camp” and retains their petty grievances. The hatreds and insecurities of life are left behind. No one goes to this place and arrives as someone proud. They arrive, and are instantly made aware of how wasteful they’d been, how careless, jealous, biased, greedy, and how scared (maybe even cowardly) they were.

But they don’t face this onslaught of bad news alone, and in sadness, for long. Very quickly, something wonderful happens. All their other ancestors (who are now long-since incapable of resentment) suddenly surround the new arrival to this place, and welcome them with hugs and tears, as if to say “It’s ok.”

I hope they welcomed her with her real name.

It’s Just Fear

Outside the hut in 1995, I sat twenty yards away on a rock. I felt like a fake—Not a sufferer of “Imposter Syndrome,” but a true imposter. Pulling my knees into my chest, staring out, too devastated to cry, too stunned at what a coward I was. I was as emotionally and physically naked as I could ever be. TMI alert: I can still feel the humiliating coldness of the rock on the bottom of my testicles.

I’d been given this incredible opportunity to spend time with this amazing man, who clearly wanted to act on my father’s behalf for a few days, and that only now in this moment was I admitting to myself was the kind of attention I’d been starving for my whole life, albeit from someone I could admire. And beyond my wildest nightmares, I’d blown my only chance.

But John fixed it. He disarmed what plagued me with knowledge that I had never considered before, and this is the reason why I have never panicked since.

He exited the hut to find me, but was not stern. He seemed relieved when he saw that I was close by. His words, as he tentatively touched my shoulder, were so surprisingly instructive. His delivery, gentle. His rationale, perfect…

“It’s just fear. That’s all it is.”

(Pause.)

“Now come back inside.”

***

(For Will, and Bo)

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