Where Religion and Science Collide

Faith, health and conspiracy in the time of COVID-19

Story, photos and illustrations by Olivia Swant-Johnson

Rolland Karlin, mayor of Big Timber, Montana, describes his community as “Christian,” a characteristic shared by many small towns in the West.

“I mean, we have a Catholic church, two Baptist churches, a congregational church, a regular Lutheran church and a Missouri Synod Lutheran church, a Mormon church, an evangelical church, a church of God and a church of Christ,” he said counting them off on his fingers. “Oh, and an Episcopal church, too … Lots of churches — we’ve got more churches than bars!”

An impressive feat in Montana.

Like much of the rural West, Big Timber’s strong Christian foundation coincides with conservative politics and a “Give Me Liberty or Give Me Death” attitude, ever prepared to square up against any perceived government overreach.

Now in his final stretch of a four-year term as mayor of Big Timber, Karlin doesn’t plan to throw his hat in the ring again. He hadn’t anticipated becoming a liaison between his community and political leaders during a highly politicized global pandemic.

Describing the lockdown in 2020, Karlin recalls closing down the library and putting yellow tape around the dugouts at the baseball field and parks. He sounds frustrated when he tells me he still saw people chatting in the post office lobby despite signs advising otherwise, and crossing his yellow tape to sit shoulder to shoulder in the dugouts.

“I wanted six feet,” he said.

Rolland Karlin, mayor of Big Timber, Montana, stands in his front yard on September 30, 2021. A man of faith with conservative politics, Karlin has also devoted 38 years of his life to instructing future scientists as an award-winning teacher in Montana.

Ultimately, Karlin had to toe the line between setting guidelines and allowing Big Timber’s residents to make their own decisions, knowing they would do that anyway.

After all, Karlin got the COVID-19 vaccine, but it wasn’t because he was told to.

Karlin was 4 years old in 1953, when he contracted polio. He remembers flu-like symptoms, his mom cradling him in her lap on the drive from Columbus to the hospital in Billings, and the needles in his back that put him “out like a light” for weeks before he woke in an iron lung. A precursor to modern breathing machines, the iron lung was a large pressurized capsule that held the body inside with just the head sticking out, and pushed air in and out of the lungs by force.

Describing the mechanism, Karlin took the opportunity to explain the physiology of the lungs and diaphragm. “We don’t suck air in. It’s pushed.”

Karlin spent two weeks in the iron lung — his lifeboat — before he was moved to a crib. With the right side of his body paralyzed from the virus, he laid in a hospital room only accompanied by a “crabby” nurse who would get frustrated when he would ask her to wind up his little metal car so he could watch it roll across the bed.

He remembers his parents and his grandmother speaking to him through a door 20 feet away.

“I wanted a hug so bad,” Karlin said, and for a moment I thought his eyes were misty behind his wire-rimmed glasses. “That was social distancing.”

Karlin considers himself blessed to have survived. He turned 5 in the hospital, and recovered before the vaccine was available. By the time he was released, he had regained function of his right side, apart from his right arm. Rested on the conference table of the Big Timber Town Hall, fingers splayed flat, he lifts it with his left hand and drops it limp at his side to demonstrate.

For as many emails as have been sent citing “these unprecedented times,” Karlin draws a lot of parallels between our current pandemic and polio’s terror in the ‘50s.

“People were crying out for a vaccine, aching, and as soon as it came out they got it and their kids got it,” Karlin said.

Although he had already recovered from one strain of polio, Karlin recalls being vaccinated against other variants of the disease. He remembers kids lining up at school to receive a pink liquid, administered orally on a sugar cube.

Karlin grew up to be a capable and resilient young man. “My dad never let me claim my handicap, God bless him for that,” he said, recalling the time that he came home from the third grade, crying to his father that he wanted to be a Cub Scout, but couldn’t climb a rope.

“He swore at me and he said ‘you want to be a Cub Scout then blankety-blank, you go be a Cub Scout.’ So I went all the way through and became [an] Eagle.”

Karlin went on to become an award-winning science teacher, honored by former president Bill Clinton as the Middle School Science Teacher of the Year in 1999. He also led a wildly successful Science Olympiad team, which competed nationally 19 out of the 25 years he led it. Karlin said their success was because the kids “wanted to win,” but that doesn’t seem to be the independent variable.

All four of Karlin’s children found their careers in the Science Olympiad, he said. So did countless others whom he lists o by name, current location and occupation, beaming. Geneticists, engineers, biologists, physicists.

“Jesus is important in my life because I think I was spared to do something for him,” Karlin said, before launching into a story about another student who he cared about deeply.

A 1958 school photo shows Rolland Karlin, second from the right on the bottom row, as a fourth grader, wearing his cub scout uniform, and a brace holding up his right arm, which was paralyzed by the polio virus. Given a close personal history with vaccines, Karlin got the COVID-19 vaccine, and says that he would encourage anyone else to do the same “for the sake of the others.”

In recent centuries, science and religion have largely been reduced to political adversaries. Many religious leaders have pointed to science as a threat to the foundations of their traditions, placing religion itself squarely in opposition to many scientific advancements.

Members of the scientific community have returned the same hostile notion: our ideals cannot exist peacefully, your magic is dumb. So we’ve created a binary that gives Christians a long list of questions like, “Can I be a Christian and believe in the Big Bang? In evolution? In climate change?” and most recently, “Can I trust God and get a COVID vaccine?”

While many groups have been skeptical of COVID-19 mRNA vaccines, few have been as vocal in their opposition as the conservative Christian church. Christianity makes up just over 70% of the adult population of the U.S., according to Pew Research. A separate Pew Research study conducted in March 2021 found that 36% of all Protestants planned to refuse the shot, with 45% of Evangelicals taking the same stance.

With lines like these drawn in the proverbial sand, it’s easy to forget the roots of many modern sciences grew out of churches, synagogues and mosques, borne of thinkers who sought to understand the laws of nature established by their God. Ideally, the goal of both science and religion is ultimately to steward a healthy, just world, and perhaps if we remembered, then our conversation could begin to change.

A 1997 survey by the University of Georgia found that about 40% of responding biologists, physicists and mathematicians believed in a God who actively communicates with humankind and to whom one may pray “in expectation of receiving an answer.’’ These results were nearly identical to those of the same survey conducted in 1916. If those numbers hadn’t moved in 81 years, it would be interesting to know how much they’ve changed in 24. It’s possible that this war of ideologies isn’t such a war at all.

Karlin gets excited, leaning over the table in the town hall to explain to me the ways the events described poetically in the Book of Genesis coincide with what science has also informed us about the history of the universe. Light, then water and then creatures crawling from the water — “Science!” he exclaims.

“And in the Bible it said God created the heavens and the earth in six days. Now how do we know how long a day was for God? . . . No one was around keeping track of time.”

In his book “The Language of God,” Dr. Francis S. Collins, the head of the Human Genome Project describes his experience of sequencing the human genome as “both a stunning scientific achievement and an occasion of worship.” Dr. Collins wrote he believes in a loving God who established natural laws. In supporting that belief, Collins points to the simplicity and elegance of mathematics, the precise tunings of universal properties which made life possible against unimaginable odds, and altruism — the compulsion to help others at our own expense — which he said is present in humans despite evolutionary explanation. Collins concludes that while science offers us a set of natural laws: whens, wheres, whats and hows that govern our natural world, it does little to answer questions of

Concluding his book, Dr. Collins proposes a synthesis, coined “BioLogos” or “Theistic Evolution.” Using lengthier words, it essentially sums up Karlin’s ideology as well: God chose the “elegant mechanism of evolution to create microbes, plants and animals.” Some of those animals would have “intelligence, a knowledge of right and wrong, free will and a desire to seek fellowshipwithHim.”They would also “ultimately choose to disobey the Moral Law.”

In 2009, Dr. Collins was appointed Director of the National Institute of Health by former President Barack Obama, a decision unanimously confirmed by the Senate. There, the Human Genome research became foundational to the development of the COVID-19 mRNA vaccines, which Dr. Collins was intimately involved in. Dr. Collins, like Karlin, feels called by God to his profession. Describing the development of the vaccine as “an answer to many prayers,” it was developed in record time, and with an efficacy rate nearly twice the goal. The FDA had set a threshold for approval at 50% efficacy, roughly that of the flu vaccine. Collins told the Atlantic, he cried when the efficacy rate of the Pfizer vaccine came back at 95%, describing the experience as “breathtaking.”

In an email, Dr. Collins told me that to feel such a call, and to feel as though God had partnered in the endeavor, only to have it criticized so strongly by the loudest of those who profess his own faith has been, “to be honest, very disheartening.”

“To have this kind of remarkably safe and effective scientific solution emerge to a pandemic that has already taken 670,000 [as of Sept. 23, 2021] lives in the U.S., and then to have many believers turn their backs, is not something that I as an evangelical Christian would have anticipated,” Dr. Collins wrote. “This is a “love your neighbor” moment, when believers would normally be first in line.”

Considering his history with lifesaving vaccines and science, Karlin did not allow party lines to weigh in on his decision to get the COVID-19 vaccine. “We beat polio with a vaccine. We can beat COVID too,” he said.

But the problem many of the “vaccine hesitant” seem to have with it isn’t rooted in the science, but in a perceived view of medical tyranny and mistrust of the government. Karlin said that while he is pro-vaccine, he still believes people should be able to decide what gets “stuck in their arm,” without their livelihood being threatened.

“But I would encourage anybody that would ask me to get the vaccine, for the sake of the others,” Karlin said.

Collins said he wishes he and other public health offucials had done a better job of explaining why the decision to become vaccinated is not just an individual one, but about protecting others, too. While Karlin supports the “Don’t Tread On Me” attitude of the rural West, Dr. Collins has less patience.

“Those who complain loudly about infringement of freedoms neglect the understanding that our founders made clear — freedom is not just about rights, it’s also about responsibilities,” Collins said. “I don’t have a right to get sick with a preventable disease if I might then pass it on to my neighbor with a kidney transplant, for whom the vaccine doesn’t work so she might well die.”

It’s worth noting that George Washington mandated smallpox inoculations — an early, much riskier form of vaccine that involved scraping the skin and then rubbing it with live virus — among troops. He also once wrote to his brother, frustrated about a Virginia law that restricted inoculations, saying if he had a say in the matter, he would rather “a Law to compel Masters of Families to inoculate every Child born within a certain limited amount of time under severe Penalties.”

But for many Christians, that fear of tyranny is exacerbated by apocalyptic ideology and the ever looming “end times.”

Illustration by Olivia Swant-Johnson

Enter Revelation 13.

It’s difficult to wade through any online Christian forums without finding an onslaught of references to the chapter, be it posted by someone’s middle-aged aunt on Facebook captioned, “WAKE UP AMERICA!” or by anonymous Reddit users in a panicked font.

In case you’re unfamiliar, Revelation 13 can be interpreted to prophesize a dystopian future with one world government, one world currency, the rise of the Antichrist and the “Mark of the Beast” without which people can’t “buy or sell in the marketplace.” Used in many QAnon conspiracies, the chapter has taken a new angle: COVID-19 Vaccines are the new “Mark of the Beast.”

In August 2021, Peter Feaman, a top Republican National Committee ocial from Florida, took to his blog to spread the theory. And the emergence of vaccine mandates and passports has added new fuel to the fire.

The chaos of the past two years has created somewhat of an incubator for paranoia. For the 70% of Americans who identify as Christian, it can be dicult or impossible to untangle that paranoia from their beliefs, adding a whole new set of fears wielding eternal ramifications.

An anonymous Reddit user asked the forum r/TrueChristian for prayers for their soul. Noting that they’re fully vaccinated, they wrote, “I’m feeling the fear of eternal death regarding this issue … again … might need prayers for my anxiety and spiritual brokenness to go away in regards to the vaccine being the [Mark of the Beast] again … I don’t want to suer the seven last plagues and be eternally destroyed by hellfire.”

In that email, Dr. Collins wrote “It breaks my heart to see how many church members have been manipulated by lies and conspiracies that are propagated on social media, and have missed the chance to take care of themselves and their families and friends.”

This is not the first time a technology has been charged the “Mark of the Beast.” It’s been Social Security numbers, credit cards and smartphones as well. John Nelson Darby, considered the father of Dispensationalism and Futurism, made the first popular claim, concluding it was the telegraph in 1830.

Darby was a proponent of modern dispensationalism, fundamentalism, pre- millennialism, futurism and pre-tribulation rapture theory. A real mouthful. In other words, he believed sometime before the end of the millennium, as the world continued to descend into the depths of moral decay, believers’ faiths would be tested by their refusal to accept some sort of technology presented by the Antichrist. When they had passed their test, Jesus would snatch up all of his true believers to heaven without warning. There they would get to sit out of a series of extremely unfortunate events to be spilled out on the rest of humanity. Finally, Christ would return along with his Saints and they would rule a perfect new earth.

That Reddit user could trace their paranoia straight back to Darby and, in a just world, he’d be footing a lot of bills for therapy and Xanax.

Darby’s theological theory of dispensationalism was proposed about 200 years ago. Formalized during the mid-19th century, it grew in popularity in the U.S. after the Civil War. Cyrus I. Scofield, a Bible editor and self-proclaimed prophet, published the first edition of Scofield’s Reference Bible in 1909, which contained dispensationalist assumptions inserted into the margin notes and sold more than 2 million copies to readers, who were apt to take them as the literal Word of God, before the end of World War II. Still in print today, it’s widely circulated and available in eight languages.

The Scofield Reference Bible was the first of its kind, offering insight into the text. And while it popularized the ideas it contained to people who actually read it, they remained niche for 60 years.

Then came the New York Times best-selling nonfiction title of the entire 1970s — the dispensationalist book “The Late Great Planet Earth” by Hal Lindsey. It introduced a generation to phrases like “The Rapture,” “The Tribulations,” “The Antichrist,” “False Prophet” and “The Mark of the Beast” — all while prophesying their imminence.

In the ‘90s, Tim LaHaye and Jerry B. Jenkins launched their multimedia franchise “Left Behind,” which told the tale of those who were “left behind” after the rapture — finding their loved ones missing from crumpled trousers and steaming cups of coffee.

It depicts an Antichrist named “Nicolae Carpathia” who rises to power as a secretary general of the United Nations, and whose followers are marked with a visible symbol of their loyalty: 666. Those marked are to be eternally damned at Christ’s final return.

Illustration by Olivia Swant-Johnson

Beginning with a series of 16 books for adults with titles like “Tribulation Force” and “The Mark,” the “Left Behind” franchise published another 40 volumes for children, a 2000s graphic novel series, a computer game and four motion pictures, the last of which was released in 2014 and starred then it-boy Chad Micheal Murray and Nicholas Cage.

The 2014 movie depicted the rapture from the perspective of passengers aboard a flight to London. When all of the children and a few other blessed souls disappeared, the “left behind” spiral into confusion, devastation and violence. After a collision with another 747 whose pilot has been raptured, Cage barely lands the flaming plane into a fiery landscape. Looking out at the burning horizon, Murray observes what looks like the end of the world.

“I’m afraid it’s just the beginning,” he’s told as the camera pans out to more desolation and the credits roll. Ominous.

But dispensationalist futurism hasn’t always been the most prominent interpretation of Revelation. Another story, existing in stark contrast to the “Left Behind” series that provided many American Christian youth with fodder for panic attacks, is held by many biblical scholars.

Preterism, a much older scholarly school of thought, holds that the events described in Revelation already happened nearly 2,000 years ago in 70 A.D. Preterists don’t believe in a rapture at all.

Revelation was a letter written by an early Christian leader, to an early Christian church that was brutally persecuted by both the Jews and the Romans, and so it was written in a coded text to protect those who possessed copies of it.

Seventy A.D. is significant because that is when the Roman Empire invaded Jerusalem and destroyed the Temple of Jerusalem, which contained the Arc of the Covenant, genealogical records of the Levitical priesthood and the Most Holy Place, which was believed to be where heaven and earth met. Because of the vital roles of the temple and the genealogical records in the beliefs and traditions of ancient Jews, their destruction effectively ended the age of Mosaic Judaism. (Now we have Rabbinic Judaism.) Preterism holds that Revelation’s references to the end of the age and the passing away of heaven and earth, are actually in reference to the destruction of the temple in Jerusalem at the hands of the Roman Empire, not a future destruction of the universe.

Preterists further point to the Roman imperial cult as the entity behind the Mark of the Beast and “that abomination that causes desolation.” A long succession of Roman emperors claimed divinity and demanded to be worshiped. They had their images etched into the currency — marked, if you will — along with their claims to be divine. So when early Christians bought or sold in the marketplace, they would be using a currency that betrayed their beliefs. When Christians refused to worship them or their other gods, they became scapegoats, begging for the wrath of Roman gods to be poured out on everyone.

Nero Caesar, NRON QSR in Hebrew, was one of the most brutal emperors, infamous for acts like having Christians dipped in tar and then set on fire to light his yard. Gematria was a common form of code during this time period that translated Hebrew text into numbers. NRON QSR, coded in gematria, comes to 666.

Illustration by Olivia Swant-Johnson

I once heard a pastor tell an anecdote about a man who was treading water in the middle of the ocean. He’s crying out to God to help him when a man in a rowboat shows up and offers to pick him up. The man, sputtering, declines.

“No thanks,” said the drowning man. “God will save me.”

So the man in the boat rows away, confused, and the drowning man goes on drowning, screaming to God, “Save me, save me! I know you will!”

After a few hours, the drowning man is exhausted, his skin beginning to peel away, raw from the salt that burns his throat when he chokes on it. Still, when a cruise ship comes sailing by, and then a rescue helicopter, the drowning man again sends them both on their way, assuring them through cracked, bleeding lips that he is waiting for God to save him.

Then the drowning man dies. When he gets to heaven he’s angry, marching up to God.

“You didn’t save me!” He yells, pointing his finger. “With all of your power and might you didn’t save me!”

And God said to him, “I sent you a rowboat, I sent you a cruise liner and then I sent you a rescue helicopter. You didn’t save you.”

Polio’s terror in the ‘50s came 20 years before Hal Lindsey’s “The Late Great Planet Earth,” which would take America by storm, selling over 15.5 million copies and proclaiming prophecies of doom that would seep deep into the American psyche. And perhaps that’s got something to do with the public acceptance of the polio vaccine — how it was taken at face value: An incredible scientific accomplishment that saved the lives of an unknowable number of children.

Had those ideas already taken root then, and grown into the paranoia that we see manifesting itself today, it’s likely that we would have been much less successful in eradicating polio.

I recently received this text message from my uncle, who often reads his Bible while sitting on the toilet: “Well, if you trust God, then why get the jab?”

I’ve been thinking about the drowning man a lot these last two years.

Chapter 10 of Dr. Collin’s book ends, “The God of the Bible is also the God of the genome. He can be worshiped in the cathedral or in the laboratory. His creation is majestic, awesome, intricate, and beautiful — and it cannot be at war with itself. Only we imperfect humans start such battles. And only we can end them.”

It’s unlikely science or religion are going anywhere. They are both going to continue to shape our world for the rest of humanity’s existence.

In an email, Dr. Collins wrote, “Jesus’ words come to mind ( John 8:32) “The truth will set you free.” But there is so much misinformation and disinformation out there now. I pray that the church will rededicate themselves to finding the truth in all things.”

Misrepresented and Misunderstood

Why media needs to listen to autistics

Essay by Ella Musgrove

Illustration by MaKayla O’Neil

The hardest thing about being autistic is not the actual autism. It’s the way we’re expected to live in a world not built for us.

A lot of the traits most associated with autistic people, things like being nonspeaking, or stimming — a behavior meant to provide more or less stimulation — or even not making eye contact, are things non autistic people in media and organizations like Autism Speaks have tried to erase. This is part of the reason why autism is so misrepresented in the media.

There are bad examples of autism representation, such as characters who are either offensive because of the obvious lack of time that went into including the autistic community in media representation about themselves, or the generic autistic savants who set an unrealistic standard. Recently though, there has been some better representation of those on the spectrum which included more variety in what autism looks like. But why does good representation matter in the first place?

Tiffany Hammond, the face behind the popular @fidgets.and.fries Instagram account, understands that it is important to be included. Her account, which has a focus on activism for the autistic community, goes in depth about her personal feelings as a Black autistic woman, but also her experience as a mother to her two autistic sons. However, as opposed to just focusing on educating non-autistic viewers, she also speaks to those on the spectrum. She and other BIPOC (Black, Indigenous, people of color) creators must represent themselves because they are often ignored or excluded from sharing their point of view. 

Illustration by MaKayla O'Neil

After Hammond started her Instagram account, she said she felt disheartened from all the hate she got about broaching intersectionality.

“Every time you said something there was all this pushback and anger and all this hate,” Hammond said. “And now, I still get the hate, still get the anger, it’s just not as big.”

Intersectionality is all about the layers of discrimination someone may face. A person could be Black and speaking-autistic or white and nonspeaking-autistic, and their experiences are fundamentally different. Hammond cites having lower economic status, having mental health issues and identifying as LGBTQIA+ as additional layers of oppression along with being autistic.

 Intersectionality is all about the layers of discrimination someone may face. A person could be Black and speaking-autistic or white and nonspeaking-autistic, and their experiences are fundamentally different. Hammond cites having lower economic status, having mental health issues and identifying as LGBTQIA+ as additional layers of oppression along with being autistic.

Hammond started posting regular content about autism and intersectionality in June 2020 and she’s only gotten more vocal since then. She discusses race and how people in the autistic community ignore those who try to incorporate other identities within autism.

“There needs to be some specific attention drawn toward those who are Black, those who are aged, those who are trans, those who are nonspeaking, so there’s a lot of different layers [within the autistic community],” she said.

Tim Boykin, a Black autistic influencer by the handle of @blackautisticking on TikTok, agreed and said he wants to see more BIPOC autistics, and everything in between on the screen.

Boykin started posting about autism and advocacy in 2019, sharing everything on his platform from singing videos to how he sees the world as a Black autistic man.

“I wish media could stop portraying autistic people as deadpan, and also white, and usually straight,” he said. “And I also want to see autistic people who are not always that smart.”

Autistic people want to see authentic representation of our struggles. However, we also want to show the good parts of ourselves too. Sometimes the media focuses too much on how we have meltdowns, but doesn’t include, for example, being detail-oriented or our excitement for our special interests.

“The bad about autism has been shown too many times. They should promote more of the good about autism, just as much as the bad,” Boykin said. “It is very beautiful to see good representation toward people like me because it’s something to look up to, something to admire. We’re not just something bad that people see, we are something more than that.”

Boykin and Hammond argue part of the issue is that autism advocates, who are largely white, speaking-autistic people, are not listening to the intersectionality argument. 

“Even when we’re sitting at these tables with everyone else, it still involves society listening, it still involves other autistic people listening,” Hammond said. 

Boykin echoed that sentiment and said, “I feel like I’m excluded out of the picture because I don’t see that many autistic Black people.” 

A lack of Black autistic representation leads to an imbalance in how the world views autism. Just like showing only smart, autistic, white men in the media leads to an incomplete view of the autistic community. Showing only white autistic people and not BIPOC, or only men and not women affects outsiders’ view on what autism is and who has it.

Jennifer Closson, assistant clinical professor in the speech and language school and director of the University of Montana’s MOSSAIC (Mentoring, Organization, and Social Support for Autism/All Inclusion on Campus) program, is also an advocate for autistic people. Instead of a social media platform though, she uses her professor status to educate people on autism and provide safe spaces on campus for students on the spectrum through her program.

“If people on the spectrum can have a safe space, and the support that they need to be successful … we’re gonna have more people achieve their dreams,” she said.

Closson also gives a presentation every year at DiverseU, a campus wide event that promotes diversity and discussion on social issues. 

Closson said part of her reasoning behind wanting an inclusive space, having discussions surrounding diversity and wanting to see more accurate media portrayal, is because it promotes awareness and acceptance.

Despite the large strides Hammond, Boykin and Closson have taken for inclusion and representation for autistic people, there are some people who misrepresent autism by favoring one perspective — their own. 

Autism Speaks, an organization that appears to help all on the spectrum, provides one of the most damaging representations of autism yet, and they’ve been doing so since 2005. Starting as a nonprofit made by Bob and Suzanne Wright, it quickly became one of the country’s most widely used resources for information about autism, helping parents find therapies and other services for their kids.

John Elder Robison was one of the few autistic people formerly on staff of Autism Speaks. He was a member of the Science and Treatment boards. He wrote in a blog post on November 13, 2013 that he was resigning after two years, because he could no longer continue to support an organization with ideas so different from his own. As an autistic advocate, Robison tried to change the Autism Speaks organization from the inside, but found that it was more deeply rooted in ableist ideals than he previously thought.

“No one says the Cancer Society does not speak for them,” Robison said, referencing, “Autism Speaks does not speak for me,” a saying people on the spectrum use to indicate they would prefer Autism Speaks stop speaking over them.“Autism Speaks is honestly not the best company,” Boykin echoed. “They promote themselves as like this wonderful and loving place, but if you actually look into them you can see that they have a crooked past.”

Although it may be in the company’s past, they have never formally apologized for videos like, “I am Autism.” Released in September 2009, it starts with, “I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.” The video demonizes and fearmongers autism, treating it like a disease that ruins our life like cancer. Actually, that’s not fair to cancer. People with cancer are still treated like human beings.

Their current goals for research enforce this idea that autism is a disease. MSSNG, a research program focused on genome sequencing, provides researchers with sequenced genomes from those on the spectrum. As stated on the website, their goal is “to speed the development of more effective and personalized interventions for autism and its associated health conditions.”

This would all be fine and dandy, but this research about the genetic cause of autism could only lead to eugenics, or the practice of selective reproduction by means of picking more “desirable” children, i.e. parents who get pre-screened may find out their child is autistic and decide not to have the baby. It’s worse than a cure, its eradication. 

This idea that autism is somehow a disease has never, and likely will never, leave the roots of Autism Speaks, and that is why those on the spectrum tend to distrust this organization. But there are two sides to every story. 

While being an autistic advocate for herself, Hammond is also a mother of two autistic sons, one of whom is nonspeaking. She felt conflicted about Autism Speaks since they were the only ones, back in the early 2000s, who had the resources available to help her and her family. 

“I feel like they do a lot of things that are harmful to autistic people,” she said. “They have a lot of positions that are not helpful, [but] they do help a lot of parents in some ways.”

“I feel for a lot of parents who are like us,” Hammond said. She said as a parent of an autistic child, she was looking for the right answers, like many parents. Autism Speaks seemed to have all the answers, but we’ve come a long way since then.

Not everyone chooses to educate themselves on what can cause harm to autistic people.

As a child, you probably saw characters like you on the screen all the time. You turn on the TV — maybe the Disney Channel or Nickelodeon — and you’re immersed in a world of characters who look like you, act like you and think like you.

However, if you’re on the autism spectrum like me, all you know is that these characters are not meant to be you. 

Recent shows have tried to provide representation like that — and failed. “Music” is a movie directed by Australian singer-songwriter Sia. It is about a non-speaking autistic girl named Music, played by Maddie Ziegler, whose older sister, played by Kate Hudson, comes home to take care of Music after their grandmother dies.

In case you’re about to look up the answer to the question you’re surely asking yourself, no, Ziegler is not autistic. Neither is Keir Gilchrist, an actor who plays the autistic main lead in the hit Netflix original series “Atypical.”

Creative Commons License

This trend of neurotypical actors playing neurodivergent roles is offensive, especially considering that when the work day is over, they can take off those neurodivergent traits and go back to their lives. Neurodivergent people should always play those roles, just like how any other minority should always be played by a member of that minority — or any other discriminated group of people for that matter.

However, the faults of some of these horrific pieces of autistic representation don’t stop at just the actors not being autistic. Sia reportedly used Autism Speaks as a source for much of the movie and even used some controversial therapy tools in some of the scenes — the scenes which were later removed from the final picture.

The scenes included restraining, a tactic that is highly controversial within the autistic community. Prone restraint, the type used upon the autistic character in the movie, has actually been linked to many cases of abuse and death, due to its characteristics of holding someone down against the floor and sometimes even suffocating them.

How could “Music” have better represented the autistic community though?

Sia should have consulted the autistic community, maybe even hired an autistic consultant who would have helped her not reinforce harmful stereotypes. She also should have hired an autistic actress to play the supporting female lead because autistic characters should, and need to, be played by autistic people. 

However, there are some examples of good representation in media. “She-Ra and the Princesses of Power,” created by Noelle Stevenson, is one of them. While it has been hailed for its exceptional LGBTQIA+ representation, it’s how the character Entrapta is depicted in the show that has been healing for many on the spectrum.

Entrapta, voiced by Christine Woods, is a lovable character for many reasons: She’s endearing, a tech-genius extraordinaire and even though she has trouble relating to the other princesses, she still cares a heck of a lot. While it wasn’t ever explicitly said in the show, Stevenson confirmed after the show ended in May 2020 that Entrapta is autistic and an autistic member of the crew, board artist Sam Szymanski, was a point of reference for the character.

One of the scenes in particular that was well done was in Season 5, Episode 2, “Launch,” where the other princesses must work together to solve a problem. However, Entrapta and the other princesses have an obvious lack of communication and things eventually go haywire.

When one of the princesses shouts at her for her apparent lack of concern about people, Entrapta apologizes, saying she’s not “good at people, but I am good at tech. I thought maybe if I could use tech to help you, you’d like me.”

After watching this, at age 18, I burst into tears. I had to pause the show and cry because this moment right here — this was the first time I felt seen on screen. It makes me cry just thinking about it.

This is great to see in a children’s show and I can only wish I was a child right now, seeing Entrapta’s adventures growing up instead of character after character who kind of sort of acts like me, but isn’t me.

Another example of exemplary representation of the spectrum is a short Pixar Animation Studios film called “Loop” featured on Disney+. This time, with a nonverbal autistic voice actress playing the role of nonverbal autistic character Renee.

This short film is centered on Renee, voiced by Madison Bandy, and Marcus, voiced by Christiano Delgado, and Marcus’ attempt to help Renee after he inadvertently causes Renee to have a meltdown. What I like about this portrayal is that Marcus isn’t made out to be a hero. I also greatly appreciate the discourse he has with Renee. He apologizes for scaring her and allows her time to regulate her emotions.

This film garnered attention from outside the autistic community and helped show an honest side to someone with different needs and behaviors, without making her struggles out to be a disease.

But this is still not enough. We need to continue to see good representation like this, especially with more explorations into intersectionality. We want to see gay autistic people, Black transgender autistic people and autistic people who are dealing with financial hardships. How do they navigate all these layers of discrimination and which ones affect them more? 

The autistic community certainly isn’t asking for much, are we? We want strong autistic characters who act like us and feel like us without having to apologize. We want to see those representing us actually care about the process and be willing to learn. And we want people to stop assuming they know what we look like and how we feel. Those on the spectrum are talking, it’s time for everyone else to start listening.