Transcript: Various Intersections of Autism

Anytime anyone talks about the term ‘intersectionality’, we should quote where it comes from and the history behind it. Alright so the word ‘intersectionality’ was coined by Kimberly Crenshaw in 1989 during Crenshaw’s examinations of court decisions. She crafted this word to describe the ‘intersection’ of discrimination (i.e. sexism and racism) that Black women face. Crenshaw’s examinations came to a head with a case from 1976, DeGraffenreid v. GENERAL MOTORS, in which five Black women sued General Motors for discrimination regarding the “last hired, first fired” business practice. This had to do with the landmark Civil Rights Act of 1964 and aftereffects of the Oil Crisis of 1973.

Before 1970, General Motors only had one Black woman employee, and she was a janitor. During the 60’s, GM had very specific rules about who could work in what departments. Women didn’t work in production, and Black women didn’t work in cushion. Sometime around May 1, 1970, GM started disregarding these mostly arbitrary rules. In shedding these discriminatory hiring practices, GM hired 6 Black women for production in 1970, 11 in 1971, none in 1972 and 137 Black women in 1973. The total workforce hire in those years was 8,500 people. That’s 154 Black women out of 8,500. Everything was great until the oil crisis of October 1973. This effect was immediate, and in January 1974, GM laid off 8,561 people. The layoffs only affected people hired AFTER May 24, 1968, which included ALL of GMs black women production employees. Those Black women lost that case. This case is an exceptional example of macro effects of systematic racism. The women lost the case. It wasn’t their fault they couldn’t get hired before 1968. It wasn’t their fault that GM was affected by the oil crisis of 1973. But the court still ruled that Black women aren’t a separated and federally protected class of people. The court ruled that because white women were also allowed to work in production that there was no sexism discrimination. And because Black men were allowed to work at GM too, so the court ruled there was no racism discrimination.

When we understand that the framework of intersectionality is the focus of nuance, we can begin to understand how individual interactions reinforce incorrect assumptions. So, ‘intersectionality’ as I’m about to speak on now, is an interpretation of the original meaning. Because autism is predominantly described as a social and communication disorder, it’s important to recognize implicit and explicit bias that come with every level of social interactions, from deeply personal to highly professional. These biases influence our perceptions of each other, which ultimately influences whether or not autistic BIPOC (who I’ll call BI-POC from this point forward) get a diagnosis, healthcare, and even an education. Understanding this framework is foundational to understanding the complicated and nuanced way autistic BIPOC are left behind, and also allows for creative solutions.

“Okay so, when we’re examining systematic treatment of autistic people, we need to line our analysis to this framework. Because these things are all connected.

“Just getting a diagnosis as a person of color can be difficult. I got diagnosed with ADHD and Autism Spectrum Disorder when I was 25 years old. I didn’t even seek help until I was rejected from management positions by multiple jobs. I went to therapy to try and figure out what it was about me that was causing me not to succeed among other women of color in my town. Mental health just didn’t have much of a place in my life as a Mexican-American. In my youth, the extent of my differences were mostly kept from me. I got good grades and I wasn’t a behavioral nuisance, so my misunderstandings, lack of eye contact and social mistakes were not taken seriously. If I made bad grades and annoyed my teachers in class, I still probably wouldn’t have been diagnosed with autism. My autism wasn’t considered serious until it started affecting my career. I knew I was at least kind of different, I wrote in my diary at 16 that I was sure I had ADHD, but even at the time I couldn’t get anyone to take me seriously enough to get tested. The people I hung around (most of whom also diagnosed later with ADHD) corroborated my experiences as mostly normal, and just guided me through social situations I didn’t understand. To the grown-ups though, ADHD was for bad boys, not good girls with good grades. I never would’ve guessed I had autism though.

So I continued living my life. The two diagnoses startled me, so when I told my friends and family, I expected pushback. “No you’re not,”-style. The majority of my friends and loved ones were like “makes sense”. With me just like, “what do you mean ‘makes sense’??” as I started navigating life with this fresh information. If it made sense, why didn’t I get diagnosed sooner? Well, because many health care providers simply don’t know what autism is like inside the brain. They think it’s something you can always see. Trademark autism traits are supposed to be visible and obvious. Repetitive behaviors. Obsessive interests. Hand clapping, verbal tics. But that’s not the stuff we focus on when we talk to each other. So that doesn’t mean anything when you’re actually talking to an autistic person. In every conversation I’ve ever had, before I was 25, none of us knew I was autistic. Not even me. Because I didn’t have a diagnosis, expectations of me varied widely. Some people thought I wasn’t very smart, other people thought I was trying to be weird on purpose. Not much was known about autism.

According to Medicaid data from the 90s, which is around the time I would’ve been diagnosed in elementary school, there were indeed racial disparities on the diagnoses physicians were giving out. Before eventually reaching autism, BIPOC children were 5.1 times more likely than white children to receive an adjustment disorder and 2.4 times more likely to be diagnosed with conduct disorder. Research from 2007 has suggested there are cultural variations of symptom description and presentation, along with clinician interpretations and expectations. This would stand to reason that there are racial variations as well, 5.1 times more likely doesn’t come from thin air. AAVE? Spanish or Spanish accents? It boils down to the doctor’s perception that there is a language barrier. I can’t count the amount of times people have walked up to me speaking Spanish all of a sudden because I look like I speak Spanish.

This individual interaction of ASD evaluations is wrought with interpersonal misunderstandings. Other research backs this up; Focus groups conducted with Latino families in 2014 stated that they hadn’t heard of autism. When shown videos of autistic children, most of the participants added context regarding the relationship between the child and parent, namely that the child was attention-seeking and needed more love. To further this, the participants mostly agreed that going to the doctor was reserved for physical sickness. The Spanish-speaking focus group noted the autistic children’s poor socialization and lack of language, but associated these behaviors with the child being bad or disruptive. These attitudes are part of culture sensitivity. Research from 2011 corroborates this: 51% of Latino families and 41% of Black families didn’t think their provider was sensitive about family value and customs. Overall, there are obvious racial disparities in care, so it shouldn’t be surprising that the diagnosis rates are lower among Black and Latino children. And adjustment disorder and conduct disorder don’t get individualized educational plans since they’re considered behavior disorders. So basically, Black children are 5.1 times more likely than white children to miss out on having an IEP and accommodations because of interpersonal bias that occurs between their parents and their pediatrician. Even disruptive Latino children are viewed within their culture as needing extra love and attention, but not necessarily institutional support, and therefore also locked out of an IEP and reasonable accommodations. Individual misunderstandings on a grand scale, because it’s all connected.

Adults are a whole different ballgame. My adult life can be evenly separated between pre- and post-diagnosis. Pre-diagnosis, I narrowed down that I wasn’t successful around noise and too much light. I did my best work with a computer in the corner in the dark. I applied for team lead positions multiple times, and over and over I was rejected. I had creative solutions to problems and learned quickly, but one of the gripes that followed me from job to job was that I wasn’t easy to talk to. I’m not very good at masking my inability to listen correctly the first time, and my impatience and disheveled nature just doesn’t jive with abrupt social interactions.

“The misunderstandings, the eye contact, the social mistakes. Those are the little things. These little things affect whether or not we’re understood on the whole. Perception of these mistakes varies between cultures. Autistic BIPOC may be viewed as rude, aggressive, angry, or disrespectful. Instead of getting, “hmm, you’re different, I should be patient with you,” we get, “what’s your problem? Don’t take it out on me.” When we’re perceived that way, it changes the course of the individual interaction. Suddenly those little things are reasons to treat us badly. The perceptions that I was aggressive and rude were why I wasn’t getting promoted, but masking wasn’t successful either, because I don’t have the patience for long-game fakery. So it becomes a matter of time before I accidently offend someone. This could be small like closing my eyes to hear better being interpreted as being tired of listening. Or big things like being frazzled and hungry and accidently saying something too loud or too curt. I have cycles where I apologize for myself but it gets really old. Sometimes I’ll take for granted that I’m talking to someone who understands me and my movements, only to not realize I’m displaying a behavior they’ve never seen. I’ll realize it when suddenly they’re acting weird with me.

In the professional environment, these perceptions show themselves as social ostracizing, meeting about anger management, raise cuts, HR investigations, and firings. When we’re perceived as aggressive, people will interpret any vocal inflections to be personal slight. Mild friction festers into write-ups. Performance reviews are utilized to settle personal vendettas. Kinda clumsy? A walking hazard and danger to other employees. Wearing tinted glasses for light sensitivity? Um, why do they get special treatment. Literal and by the book? The management team will throw it at you the second they don’t like you and want you gone. There’s a reason that the unemployment rate of autistic people is more than 80%. Nonverbal communication accounts for 70-93% of all communication, so for autistic people, that means we are locked out of most types of communication. If this much of communication is not accessible to autistic people, that translates into us not understanding why we’re being shut out, why we’re in anger meetings over conversation hiccups, why we’re being written up for insubordination.

There are professional challenges post-diagnosis. Having a doctor’s note doesn’t mean that suddenly people don’t get annoyed with you. I’m kind of annoying. I tend to ask redundant questions (because my audio processing disorder means I don’t listen right the first time), and then I get distracted by my own misunderstandings. Even in professional settings, people can lose their cool and wield their power against you. Having a diagnosis doesn’t get rid of the stigma of mental illness. People didn’t stop thinking I was trying to be weird on purpose. I was mostly the same. Remember the reason I had to go get diagnosed in the first place was because I kept being taken off to the side and softly explained that I’m too raw and aggressive. So once I had a diagnosis all I really had was a piece of paper that said I was never going to understand that stuff and to work around it. What does that mean for me in advancing at the workplace? 

Okay, so I’m going to take a moment to talk about what academia calls, “perceived discrimination”. In exploring perceived discrimination and its effect on health, researchers found that this perceived discrimination is linked to hypertension, increased heart rates, and cardiovascular responses. These are physiological reactions of the heart are predecessors to coronary heart disease, which is the leading cause of death for people of most racial and ethnic groups in the US, according to the CDC. Other physiological reactions are inflammation and asthma. That means regardless of whether or not BIPOC is autistic, their hearts and bodies will literally react if they are perceiving discrimination. This includes discrimination outside of race, such as disability, gender, age, socioeconomic status, and sexual orientation. All discrimination is linked to physiological stress reactions.

Think about how people act and behave when they feel disrespected or discriminated against. Whether or not the person they’re interacting with is actually disrespecting them. Because in those moments you can’t tell the difference. Everything starts to escalate faster and faster. For autistic people, as we get closer to meltdown mode, our brains act against us. Emotionally-driven conversations create intricate thoughts and feelings that crash us Blue-Screen-Of-Death-style. Autistic BIPOC experiencing racism still experience cardiovascular physiological reactions to discrimination. These stress responses elevate also our anxiety and pushes us closer to meltdown mode. I don’t want to make leaps without science, but I would venture to say that those levels of stress would put autistic BIPOC at greater risks of burnout at younger ages.

Anyway, in fight or flight mode, we can’t think straight. It doesn’t help anyone when everyone is thinking about controlling the person having the meltdown and trying to reason with the autistic person in distress. Our brains are shorting and words aren’t coming out. We can be screaming in our heads but the words get stuck. Sometimes we don’t have words at all. What do you do when you’re in distress and everyone thinks you’re just ‘acting weird’? Our jerky movements, lack of eye contact, stims, verbal misunderstandings, screaming, crying, running- can raise the anxieties of people around us. If you think it’s stressful for you, I promise it’s more stressful for us. For autistic BIPOC, we have added levels of systematic stress that force us to internalize so much in order to stay off the radar of social services. I worry that a bad day in front of the wrong people will get me institutionalized. I’m lucky that my family support system is also against institutionalization. Science from 2016 corroborates that in my culture our families believe in taking care of our loved ones who are disabled and elderly, so for a healthcare professional to even suggest that would upset my family. My healthcare provider is culturally sensitive enough to be aware of this, so even at my darkest moments, she doesn’t suggest it. This is incredibly important to me.

In addition, self-reported discrimination is found to affect mental health more than physical health. Let’s think about that for a second. All kinds of discrimination is linked to physiological stress reactions, and racism in particular is linked to cardiovascular responses. Research from 2017 suggests that even with this knowledge, that there are gaps in academic knowledge about self-reporting discrimination and perception biases, such as minimalization bias, which is where a person underreports, or vigilance bias, which is where a person overreports. Also, observation is not inherently objective, and becomes subjective when we add our own opinions. Individual opinions that could be tainted with bias. So when we think about perceived discrimination, it’s important to realize we ourselves are prone to either intaking this information with minimalization bias, or become overwhelmed at our individual realizations and suddenly have a vigilance bias. Being aware of perception is key to understanding its place in conversations and interactions.

So now that we’ve covered different kinds of bias, we should really take a minute to explore perceptions and individual interactions of autistic people and police. When meltdowns happen in public places or when loved ones perceive the loss of their sense of control, the police are generally called. As we start reaching internal meltdown levels and experiencing limitations, the danger that any police officer, even mental health officers, could defer to “neutralize the threat” training instead of de-escalation rises as well. If police don’t understand behavior to be part of a disability, they will mistake the behavior for threatening, and those key words, “I felt threatened” come out and like magic, all accountability is lost. The intersection of disability and the criminal justice system. Because when we’re being realistic, a police officer feels threatened by criminals, not by disabled people in distress. So the bias that distress mimics criminal behavior along with the perception that disabled autistic people are criminals is what drives officer’s motivation of protecting themself.

In those tense moments, the police officers aren’t thinking about that day they went to an autism or mental health seminar. Autism training, identification bracelets and cards are meaningless during an actual crisis. 911 might not communicate the person is autistic, the autistic person might not even be diagnosed. Perceptions of people who call 911 might be wrong. Honestly, there’s a lot of discourse around police officer training. It’s not new stuff at all. BIPOC have been getting killed by police since police inception. Even though cities have mental health officers, they are still cops. It’s connected. On an individual level, our instinctive reactions scare police. Specifically, individual police officers with ableist and racist biases.  The problem is that mental health officers are police officers who were originally trained to neutralize threats instead of de-escalating situations.

Individual perceptions are what build interpersonal miscommunication. The framework of ‘intersectionality’ means realizing that because our interactions with institution are through individual people, it’s easy for perceived discrimination and physiological stress reactions to happen to autistic BIPOC. Perception and bias are the undercurrent in the ocean of social interactions. It’s easy for the doctor to go along with parent and teacher perceptions of naughty child. In the physician’s mind, if the child has good grades then they don’t have a learning disability, they have a behavior disorder. In the teacher’s mind, the child understands, they just don’t act right in class. In a manager’s mind, the employee can work, they’re just aggressive. In the police officer’s mind, the person running and point sharp objects is a criminal, not a frightened human in distress. Behavior is communication. So when anyone is “acting weird”, we need to take a step back and realize that our perception of what’s going on is missing key details. A step back means examining ourselves within that intersectionality framework, not filling in unknown situational details with our personal biases, and realizing that it’s all connected.