ON THE RESILIENCY OF THE COCKROACH: Joe Biel’s Autism & The Re:Spectrum of Human Emotions
This is an addendum to Joe Biel’s seventh book, Good Trouble: Building a Successful Life & Business with Autism, which details many mistakes that proved to be learning opportunities and the first 20 years of Microcosm Publishing.
Lately, I’ve been making up for 32 years of avoiding eye contact. Until six years ago, other people, in particular their feelings, were inscrutable to me. I watched throughout my life as others formed relationships, developed bonds with each other, and related their needs and expressions in a way that resonated to the people around them. To me, communication was about sharing information and nothing more. Perhaps as a result, I had gone through life as a perennial loner.
But after getting divorced — losing my house and every penny to my name — I made the decision to understand myself and checked into therapy. I took a leave of absence from work and committed myself to the project as I have with everything that I’ve done.
As I was walking out at the end of one therapy session, I mentioned in passing that my ex-wife, had once gotten upset with me when I told her that I had noticed that people make expressions with their faces before they are going to talk. My therapist looked concerned. She suggested that if I hadn’t suffered brain damage as an infant, this was likely an indicator of autism.
I knew it was true even before I was tested properly. When I finally did take a test, I landed in the 90th percentile. It felt unbelievably right. I had joked that I had autism for years but had never seriously considered it to be true. I had waited far too long to investigate it, until every disaster in my life had left a finger pointing at me and I hit rock bottom.
Almost seven years later, the diagnosis remains the greatest revelation of my life. Slowly, every pain, hardship, and depression that others didn’t seem to experience could be explained by and traced back to a difference in my neurology, and more importantly, a problem that I could solve.
I spent the next six years on and off learning intellectual methods for mimicking the nonverbal communication and emotional relating habits of neurotypicals — people who are not on the autism spectrum. As my education and cultural re-training progressed, I eventually learned that for neurotypicals, there are three stages to a conflict:
Before my diagnosis, I physically lacked the ability for step two, empathy. My mirror neurons, the part of the brain that makes every neurotypical person empathetic from birth, were dull or missing. When experiencing a conflict — as I often did — I went from step one to step three. I was inflexible in my assessment of every situation. I had no idea that people had feelings or what feelings were. I wasn’t having conversations, I was sharing information and solving problems. I similarly lacked the ability to recognize any kind of nonverbal communication, like hesitation, sarcasm, body language, tone, or facial expressions. No matter how much I tried, I could only understand someone if they explained what they meant verbatim.
My childhood had been difficult. My dad worked in a Cleveland steel mill until he had a stroke and became permanently disabled when I was six. I started to have digestive problems and suffer fatigue as a teenager. My mom was an unemployed English teacher who had a hard time controlling her temper and was often violent — especially towards my incapacitated father. I lacked role models and began to ride my bike to the comic shops and record stores searching for something that meant anything to me; something meaningful that I could latch onto. Out particularly late one night I discovered punk rock on West 44th and Lorain at an out-of-control venue run by other teenagers. Their self-expression and lampooning of authority, idols, and all things holy was one of the first comforts in my young life. But even there, as I began to make a name for myself, I still felt completely alone in the world, albeit surrounded by people that I respected and related to. While I came to know people all over the globe through my involvement with punk, there was never any kind of emotional proximity; they respected my work and engaged with me because of what I did rather than who I was.
Similarly in my marriage, I felt alone, insecure, and terrified because of the way that I was treated every day; even suicidal. The dynamic between us had always been very mutually painful. My inability to react and respond appropriately to her emotions crossed a lot of boundaries and hurt her feelings deeply. Her responding callousness and daily insults destroyed my self-esteem and confidence.
My ex frequently told me that I wasn’t perceiving a situation correctly and that I should defer to her judgment. Slowly, these experiences overwrote my own until I could not trust my own senses or perceptions. Slowly I internalized her view of every situation. While I didn’t realize it at the time, this dynamic is remarkably common among parents and children diagnosed with autism.
A few years after we were divorced, my ex began to publicly vilify me, calling me “emotionally abusive” in our relationship and defining abuse loosely as “the mistreatment of someone that causes harm.” Immediately, my reaction was to say “No, I wasn’t! That wasn’t my goal at all! I never meant to hurt anybody! I was trying to maintain my backbone and identity in a relationship that really felt like it was overwriting my reality!” But I came to understand that intentions were not what mattered as much as impact.
This pathologizing of autism is common and if you’re unfamiliar, here’s a story on Invisibilia about an autistic doctor who had seven medical assistants quit in one year due to, as she puts it, “over and over again the world didn’t respond the way she expected.” This resonates very deeply with me to this day.
I looked up “abuse” and found: “to treat a person with callous indifference or pleasure in causing pain and suffering, especially regularly or repeatedly.” Before I understood the emotional needs of others, I hurt the feelings of people that felt close to me in deep, fundamental ways. Was I callously indifferent? No, I cared that I had hurt them but didn’t know how to produce a different outcome. A common disability with autism is theory of mind; the inability to understand that others’ experience things differently than we do. When I recognized my behavior from the perspective of others, I felt like an asshole. I had been argumentative, uncooperative, and and demanding. It was painful to realize how my actions had affected others and I cried quite a bit when I learned the skills to put myself in someone else’s shoes and see how they experienced me. I was confused each time that it happened and ultimately it hurt me too; I cared about these people and wanted emotional proximity with them but had no understanding of how to achieve that. Still, my actions had hurt them. Taking responsibility for the impact of my actions and doing everything that was asked of me was the first step towards moving on. Committing my life and my work to create transformative solutions for other people who have behaved hurtfully is a close second. I apologized privately and publicly and focused on learning how to prevent it from continuing.
Emotional boundaries and nonverbal communication are seen as gendered issues. My ex-wife wrote in one of the six zines that she published about our relationship, “Part of me thinks it is in [Joe Biel’s] very nature to control situations through verbal and non-verbal manipulation, I don’t even think he is aware of it most of the time.” Which smacks of emotional manipulation and control but is also straight out of the DSM under Autism.
During our marriage, I didn’t have any perspective. I believed in a black and white truth about every situation. Still, as I learned about them, I believed that my ex’s emotions were real. I didn’t want to hurt people. So I took responsibility for my actions. I checked myself into therapy. Slowly, my therapist could get through to me that there isn’t one truth, but rather each person has a different perspective on the same events and has emotions about it. I learned that my reality does not preclude other people from having different perspectives.
Just as I was figuring things out and having my biggest breakthroughs, I had my worst setback yet. Starting about five years after I was divorced, strangers who hadn’t been around at the time took to attacking me. Even fourteen years later I am bullied and belittled online on a near-daily basis with people frequently telling me what I believe, spreading rumors of what I have and have not said, and literally overwriting my experience of what, for me, was a relationship that pushed me over the edge until I was suicidal. The anonymous bullies tell me that the problem is that I don’t admit that I have emotionally abused my ex, among other people. They began to pathologize autism, turning the disability for emotional communication into the methodical harm of other people. An abusive personality relies upon skilled emotional perception to manipulate their victims; a skill lacking in the developmental disability of an autistic person from being incapable of perceiving the motives and emotions of people they communicate with.
Even fourteen years later I am bullied and belittled online on a near-daily basis with people frequently telling me what I believe, spreading rumors of what I have and have not said, and literally overwriting my experience of what, for me, was a relationship that pushed me to the point that I was suicidal. The anonymous bullies tell me that the problem is that I don’t admit that I have emotionally abused my ex, among other people.
Now I had to deal with the emotions of people who were driven to action because of their own strong feelings about abuse. It upset me when concerned individuals would ask my ex clarifying questions about what had actually happened between us and she remained vague. I understand questions like that put her in a position of having to support her accusations and I empathized with her. Still, it felt like a didactic power play when she reiterated that supporting Joe Biel, an emotional abuser, is not a feminist thing to do and thus by supporting me, prevents someone from being a feminist. I tried to respond with my side of the story, but quickly learned that it wasn’t my side of things that anyone wanted to hear. They seemed to want validation for their emotions and perspective, which produced a further stumbling block and learning curve. I learned that perspectives beget emotions, which need to feel heard and respected. Strangers and even magazine editors increasingly mocked me and my disability in a seeming effort to prove that they believe emotional abuse is wrong. Did listening, acknowledging, and changing behavior earn me the right to be listened to and acknowledged? Should it have? It was like my whole life: I was quiet at the wrong times and spoke up at the wrong times as well. The more that I engaged, the more consequences there were. It continues to be difficult for people to trust that there is an end of the story. The situation began to feel like the the bullying that I experienced in my early teenage years.
Eventually, after I was diagnosed, my therapist referred me to a psychologist who specialized in Autism. The psychologist taught me how to detect other people’s expressions of their feelings, how to make eye contact, and what neurotypicals expect and remember from each encounter. I learned that people need to feel heard in order to be comfortable expressing themselves in the first place. Gradually, I could intellectually mimic an empathic response; a way to respect other people’s need for me to acknowledge their emotions and show that I respected them. Eventually, I could do what I wanted from a young age: blend in with neurotypicals. I thought that I had totally figured out emotions. I even started to get some truly glowing reviews of my book, Good Trouble and received interview requests from people that were completely unfamiliar with my work. It struck me most profoundly that reviewers who had already arrived at emotional conclusions about my work proceeded to maintain these preconceptions in their reviews and people who were unfamiliar with me unequivocally summarized it as a variation of “Despite his shortcomings, that he outlines in excruciating and honest detail, Joe Biel has done a ton of good for the world.”
With distance, I could see how painful it would be for my ex’sfeelings to always be ignored or dismissed. I can see how that would chisel at someone’s self-esteem and identity. My therapist and psychologist had both taught me that when people tell me about their problems, they generally don’t want me to solve them. Typically they just want to sound off while someone listens. That was concrete feedback that I could apply. But now I could understand this more than just intellectually. Having someone try to solve your problems must feel like them trying to deny the legitimacy of your emotions.
After a few more years of cognitive retraining, another development happened: my doctor found that I had critical levels of lead and mercury poisoning in my body. The probable causes were obvious. Cleveland has some of the worst levels of mercury in its rainfall in the U.S. The Cuyahoga River caught fire for 20 years because of levels of industrial pollution. Medical waste would routinely wash up on the shores of Lake Erie where I would go swimming as a child. The news reported high bacteria counts in the water. For the past 23 years I had gone to the doctor because I lacked the strength to get out of bed unassisted, was in constant pain, was incapable of digesting food or absorbing nutrients, or simply couldn’t bend my joints. The heavy metals in my body explained so much.
My doctor started me on chelation therapy, where chemicals are introduced into my blood to bind to and extract the heavy metals from my body. The chelation drugs caused an unexpected side effect in me: heightened empathy and emotional awareness. For days, my thoughts would be interrupted as I remembered various conflicts from throughout my life. I experienced each one from the perspective of the other person and realized that this must be what my psychologist refers to as being a “needy person,” a person whose emotional state is contingent upon other people’s happiness. For the first time, it wasn’t the fulfillment of my own needs or wants that made me happy, but pleasing those around me. It was enlightening yet crippling. How could a person with highly sensitive mirror neurons endure a day of interacting with other people, let alone a lifetime of it?
At a national conference, two men making small talk about their marital problems approached my partner and I. After a few minutes of them obviously wanting to connect but only making deflective jokes, I offered a story about my vulnerable emotional state during my divorce. It worked. The men began talking openly about their feelings, with a woman in the audience no less. One man said that the best advice that he’d ever received came from his teenage daughter, “Mind your own fucking business, dad!” It was powerful and transformative to see that relating and hearing the subtext is what leads to emotional proximity and relationships. It was the first time that I had successfully created a situation like this on my own. It felt like a warm hug in a cold world. Talking it over with my therapist, we concluded that neurotypicals often have pretty low emotional intelligence themselves. This realization offended me. I had put so much effort into learning to behave like a neurotypical in a world not built for me. The idea that someone who was born with these skills and yet would not utilize them for the benefit of themselves and the people around them was hard to swallow.
Eventually my therapist told me that I was his only Autistic client who both wanted to get better at social skills and emotional intelligence and was doing the independent hard work to make that happen. I was flattered but had such a hard expressing this to him that he repeated his sentiment and expressed sincerity.
Slowly, I put together the final piece of the puzzle from a lifetime of experiences: emotions by definition are not rational. Our emotional reactions are rarely proportional to what we are experiencing. And if we want emotional rifts between people to be able to heal, we all need to feel heard and hear the experiences and perspectives of everyone around us as legitimate, not only the ones that we agree with or can understand.
After I felt like my emotional journey was complete, I discovered Wrong Planet, a social media forum for people with autism. I was horrified to read story after story like mine: Autists who had been publicly shamed and had their reputation tarnished for their disabled behaviors when they were just trying to do their best. Many people had been disowned by their families or lost everything they had. Like myself, many had considered suicide as a way out of a world that was not built for them. Many other people went through with it. I learned that Autists are most likely to die by suicide. It’s heartbreaking. It’s ableist. And it shows the need for how much awareness is lacking about this subject still.
We need a way to resolve conflicts. Neither the mainstream nor subcultures have a gold standard for what accountability or even conflict resolution looks like. Even methods that we know to be effective are objectionable to our emotional selves. And I can’t begin to describe the feeling of losing the love and respect of the only true family that ever loved me. I feel that we, as a society, need to show the most empathy to the unempathetic. Over time, this perspective will create a more intersectional social justice approach as well as a more nuanced light to how we judge and understand disability.
I have done the things asked of me, done the homework to understand my problematic behavior in the past and change, expressed my sincerest apologies to the people that I have hurt, and done what I can to move on with my life. And the rewards are huge: it’s been seven years since I’ve had an emotional impasse ruin a relationship and for nearly nine years I’ve been in an incredibly positive romantic relationship that makes me feel like a million bucks every day.
She summarizes my disabled efforts at Executive Function as “throwing the entire field of psychology out the window” when failed efforts at seeing the big picture are a common trait of Autism and, well, psychology.
unfold” Perhaps the most perplexing thing about that statement is the lack of acknowledgement that she has specifically campaigned for this result for years. I’ve spent years trying to resolve this situation so that we can both be left alone and move on with our lives. Each attempt at doing that has been summarily ignored or declined.
In 2017, after many years of attempted resolution my ex’s lawyer communicated to me “Ms. Bowles is not interested in settlement.” As if she hadn’t made that apparent already. Is it really in anyone’s best interest to keep pouring salt in this wound?
that we have to choose sides. We don’t. The only side is intersectional, restorative justice. Every other “side” is a red herring and a smoke screen and makes the U.S. Justice System seem downright radical in comparison.
This has been an addendum to my seventh book, Good Trouble: Building a Successful Life & Business with Autism, which details many mistakes that proved to be learning opportunities and the first 20 years of Microcosm Publishing.
P.S. The response from people that relate to this post or that it has helped in the first few days has been tremendous and far exceeded my expectations. So I figured for those not savvy enough to figure out how to reach me, I’m going to offer my email address: email@example.com. I know that loneliness and isolation hurt people on all sides of Autism so feel free to drop a line. I know that’s what I needed at many points in my life.