By Erin Beck, writing for the “When All Are Counted” Project
When he talks about his life, Jimmy often speaks in analogies.
His dog had a rough start to life, so jumping up on people comes from anxiety. His Polish chickens, Edgar and Mr. Popo, are different from other chickens. They have full heads of fluffy hair so they lack peripheral vision, and sometimes other chickens sneak up and bully them.
Jimmy, who is 24 and lives in Gilmer County with his nephew and mother, asked me if I remember the story of Harambe. Who could forget? While Harambe turned into a meme, the event was tragic. In 2016, the gorilla was killed at the Cincinnati Zoo after a three-year-old child fell in his enclosure. Jimmy pointed out that onlookers were screaming at the animal. I thought about why Harambe was in a cage in the first place, and why people assumed Harambe was going to hurt the kid.
We’re all products of nature and nurture, changed by our circumstances and events that happen to us, as well as the choices we make and characteristics we were born with.
Jimmy is on the autism spectrum, so that’s part of who he is. But he’s also grown into the young man he is because of the circumstances that we, as his community, have decided are acceptable.
Photo by Erin Beck
His mother Geralyn and he said they ordered chicks online, and the supplier “threw in a rare breed.” Like people, chickens have differences too, some that make them more vulnerable. Polish chickens are known for their heads of fluffy feathers.
“It’s literal tunnel vision,” Jimmy said. “They often will make a lot of noise and cry out, because they won’t notice that everyone has left them.”
The hens started picking at them. He said it was a “bloody mess.”
Polish chicks have skulls like infants, he said. Pecking by other chickens could cause severe neurological damage or kill them.
And while they might be perceived as lashing out at people, before they get to know them, they’re trying to survive.
“And because I know that people with autism in school get bullied… because of the fact that the Polish can’t read social cues for the flock, I was like, it sounds like they have autism,” Jimmy said.
Edgar and Mr. Popo stayed in a dog crate for six months after the hens started pecking at them. Geralyn and Jimmy then reassembled a goat stall in the backyard barn, formerly for goats, for his roosters to have some room.
He said he could understand the feeling of being “trapped” in the smaller dog crate “because with autism it does feel like being trapped at times, because of all the sensory issues, because of the issues with communication and all that stuff, and because of the fact that the world feels very hostile to people like me.”
Assumptions hurt
What do you think of when you hear “community?” Where you live? Friends and family? Coworkers?
Jimmy finds community online, chatting with other people who have autism, and support from his dogs and roosters.
And he’s rightfully upset that in his area, there isn’t enough help for people with autism. Most healthcare providers are unequipped. People without autism don’t receive the education they’d need to better understand him and offer the social and emotional support that are basic human needs.
For instance, while some may think that lack of eye contact means disrespect, or that the person isn’t listening, he said that actually, being able to fidget and look around makes it easier for him to listen and process. Sensory food aversion is common to those with autism, and he gets angry thinking about kids with sensory and texture issues being forced to eat certain foods.
“I personally feel like a lot of the ways that our society is in general are just not friendly for people who are different,” he said.
Many people also don’t get the benefit of knowing and being close to Jimmy. He’s a smart critical thinker who’s good at helping others understand complex subjects, and the way he uses analogies is creative and artistic, too.
For the first round of focus groups for our “When All Are Counted” Project, researchers have been conducting focus groups on sense of identity, support and community among three populations that often experience struggles with the healthcare system, including LGBTQIA+ people, Black people, and people with disabilities.
I’ve focused, so far, on the education and healthcare systems. But Jimmy is clear that ensuring people with autism are treated with the respect and understanding they deserve is an even broader problem.
Media representation, as well as politics, play huge roles. The whole country “treats me like I am just defective,” he said.
He’s also bombarded with messages that people with autism are geniuses, or that they’re violent.
He used the story of Harambe as an analogy. Jimmy noted that kids have fallen in gorillas’ cages before, and no one was killed. In those incidents, onlookers were silent, he said. With Harambe, people were screaming and throwing things at the gorilla. They associated the gorilla with violence.
“The people were overstimulating the gorilla to the point where the gorilla was, I guess tensing up, getting scared, people didn’t know what he was going to do next so they had to shoot and kill him to save the kid,” he said.
Meanwhile, in numerous similar incidents, gorillas have saved children, including one that picked the kid up and laid it at the door of the enclosure, Geralyn added.
Jimmy worries about losing his animals early. He said while it may not make sense to others – perhaps people with different life experiences or who see the world differently – he can’t guarantee that he wouldn’t become violent if someone tried to harm his animals.
“The legal system sees them as like property,” he said. “I see them as the only connections I can maintain, and I take that very seriously. I take that loyalty very seriously.”
The world is a scary place for people like him, he said. Research shows that people with autism, likely due to trouble with communication and social cues, are more targeted for assault and abuse, financial exploitation and discrimination in employment.
Some research suggests autism may also be associated with aggression, but there are medications and strategies that loved ones, educators and other professionals can use to help, and it’s more likely that they’ll be victimized and they are more likely than others to turn that aggression toward themselves.
Being unable to communicate, or if people who are supposed to protect you fail to learn to hear what you’re communicating, would naturally lead to frustration.
And sometimes, Jimmy says he just needs to be left alone. He said he gets the curiosity of wanting to make the situation better, but the times “I feel more at peace is when I’m outside with the roosters because they’re not going to ask me what’s wrong.”
Jimmy experiences depression and suicidal thoughts. He told me about cutting his arm, although he wasn’t trying to die by suicide.
“It was more or less because of the fact that I do not know how to handle my emotions,” he said. “So I was basically just trying to cause myself some pain…”
Mental health providers are supposed to be there to help people who self-harm and others with mental health struggles learn how to regulate their emotions.
But Jimmy and his mother, Geralyn, said the local hospital doesn’t evaluate potential patients for whether they need inpatient psychiatric help. Instead, they recalled being told to go straight to Ruby Memorial in Morgantown, just for the evaluation, no promise of a bed, and if a bed was available, it could be anywhere in the state.
He also said he’d held down a job for five months, “and then I came home one day and had a meltdown for some strange reason, and it never occurred to me that it was sensory overload.”
It turned out that his psychiatric medication, prescribed by a general practitioner, wasn’t a good fit, and it took a year and a half to find the right medication. At first, they couldn’t find a psychiatrist, who would have had more training in mental health and related medications. Now he has a psychiatrist and goes to therapy. But they couldn’t find a pediatric neurologist, who would have had specialized training in treating neurological problems like autism, anywhere in the state.
Jimmy was terrified after the Jan. 6 attack on the U.S. Capitol. He remembered studying similarities between the way disabilities were viewed in Nazi Germany and present-day America.
“What I remember seeing after that is everything turned black and white like it was the 1940s,” he said. “And everyone I know that says they love me but support Trump were basically just waiting by as I was basically being carried away to basically my death by an officer, escorted into a car, to be driven away, to be basically taken to a death camp. I’m like, ‘if we’re going to go there, can we just get it over with please?’”
He noted that more and more Americans are willing to say that political violence is needed, and that Trump’s rhetoric encouraged violence and fascism.
“We are bordering a second civil war,” he said.
We talked about people making decisions based on fear, such as fear of Hell.
“Yeah, well I live in Hell,” he responded. “… I’m basically there, so, what is eternal hellfire supposed to scare me when you’ve made my life a living Hell?”
Support and solutions
So far in this initiative, I’ve learned that people with disabilities in West Virginia don’t feel a sense of belonging in a wider community of others with conditions that cause problems participating in certain tasks and interactions, whether that’s access to a public space for a person with mobility issues or the need for human connection.
About one in 44 children has been identified as having autism spectrum disorder, according to the CDC. But in Jimmy’s group chat, he has been the one, versus an educator or provider or family member, to help others get the proper diagnosis.
And among the broader group of people with disabilities in West Virginia, there is a disconnect. Different people have different needs, and Jimmy has heard people with service animals say that emotional support animals demean the hard work that their dogs have done.
“When you’re talking about people with autism … we don’t really need physical service dogs, we need emotional ones because it helps keep us calm in certain situations,” he said.
His dog Max got excited and jumped on me during the interview.
Photo by Erin Beck
“I’m sorry,” Jimmy said, telling me the dog was abandoned on the street. “I think he has quite a bit of anxiety.”
I asked him and his mother what a West Virginia that not only met their needs, but embraced people who are different, would look like.
More social services and specialized care, they said. Funded by the government, Jimmy said, since he doesn’t trust corporations only looking out for their bottom line.
“We need more support groups, we need people that are actually going to … listen to us and then make changes based off of what we say instead of listening to say, our parents or caregivers, because not all of us are completely detached from reality,” Jimmy said.
Meanwhile, he said a friend in London told him kids there are taught about autism in public schools. Here, public schools are focused on the same curriculum for all, he said, to meet certain benchmarks.
Jimmy and Geralyn previously lived in Virginia, and Jimmy went to elementary school there. Even there, where there were more resources and support for people with autism, elementary school teachers wouldn’t take the time to learn what triggers might cause “meltdowns,” Geralyn said. She was arrested and had to go to court because the school wouldn’t meet their need for a set schedule. Jimmy always had Wednesdays off, because school every day was too overwhelming. Thankfully, the judge took their side, but later they chose homeschooling.
People with autism may have trouble understanding social cues, be nonverbal or have communication problems. So they may need help learning to relate to others and others may need help learning to relate to them. So decimals, Jimmy said, weren’t at the forefront of his mind.
“Like, are you people trying to raise decent people?” he said. “Or are you trying to raise …drones? We’re people with different strengths and weaknesses.”
In Gilmer County, Geralyn looked for a small, quiet 4-H group to help him meet people. She found nothing.
“I think there are things that neurotypical people take for granted that I may never know, like marriage,” Jimmy said.
Jimmy also noted that kids with autism are bullied in public schools. He said we live in a society “where the victims, when they lash out, are the ones that get punished, and the bullies get away with it.”
I asked if he’d been able to get more support in person vs. online, if he thought he’d be able to get to the point where he could be in a romantic relationship.
“I think so,” he said. “Because, I’ll be honest with you, I have very little hope of finding a romantic partner.”
“The problem with that particular scenario is that—” his mom said.
“—it requires a very special type of person to deal with me,” he finished her sentence.
“And it requires people to be educated, in schools, from a young age,” she added. “So that they know about the challenges he faces.”
They also described getting disability benefits for the family as a nightmare in this state. They said it involves a curriculum test, physical tests, X-rays, and neurological tests, as well as a private interview with an unfamiliar person.
They said the process was much quicker in Virginia, where all that was needed was a review of his medical record. Records were simply transferred from a pediatric neurologist.
So they’re “scrapped for money,” Jimmy said, or he would purchase two hens for the Polish chickens. “We can barely get the pine shavings needed to just take care of those hens,” he said.
Jimmy may speak in analogies, using animals as examples, to explain the behaviors of people on various points of the autism spectrum, like himself. His analogies helped me see how he relates to an often unfriendly or even hostile world. But they also demonstrate that in our cores, we all have the same needs. They help explain how we, as the community that surrounds them, are failing.
Jimmy described being in a “dark emotional state.”
“I was having to deal with my former workplace becoming toxic as hell. I wasn’t going back to work. I had to deal with my first adult crush. And that wasn’t fun.”
He takes solace in spending time with the roosters. “I guess sometimes I project my feelings onto them,” he said. “I want them to have hens because I know that roosters are at their happiest with hens, but I can’t have them be with hens that try to murder them. Even if I don’t have an intimate relationship, I still want to see them at their happiest.”
Erin Beck is a guest correspondent and writes for the “When All Are Counted” project. You can follow her on Facebook and Twitter. If you live in West Virginia with a disability, we’d love for you to join us for an upcoming virtual focus group. Share your contact information with us, and we’ll contact you when dates are scheduled.
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