Intersectionality, Autism, and Race in the United States

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.

I Used to be Really Bad at Communicating, Then I Got my Autism Spectrum Disorder Diagnosis

As a child, I didn’t know I was different. I attributed bullying, bad situations, and negative conversations to my Hispanic background. As I got older, I thought people who didn’t like me were racist, sexist, or stupid. I figured out I was a little different in high school when I realized I had to have social situations explained to me by my close friends. I didn’t understand how I said the wrong thing all the time; I just knew I did it. My mom called it “foot-in-mouth syndrome.” I figured she was making a joke.

There are two crucial parts of autism: poor social skills and poor communication skills. The way those two parts interact in the autistic brain is that the stimuli in the environment distract from an emotional conversation (which, let’s face it, is every conversation). It’s in the brain, so it’s neurological. We can’t psychologically get distracted by the environment. Often, those distractions cause us to project invalid subtle emotional cues. The cues we unintentionally project get mistaken for emotions directed at whoever we’re our conversation partner. You can see how this poses problems — lots of misunderstandings.

I learned about emotions from reading a lot, but I still have trouble with social nuance. It’s a bit of a mystery to me. Sometimes I’ll recognize a subtle emotional cue is happening, like an eyebrow raise or a blank stare. Sometimes I respond appropriately, but sometimes I misinterpret what it means in regards to what I’m saying, and that will lead to confusion. It’s easier for me to ignore the cue, so I don’t get distracted from the main point of the conversation. I do this by looking away or closing my eyes. People won’t judge you for missing their cues if they can see that you aren’t looking for them.

Eye contact and staring at faces drift my focus from the speaker’s words to what’s going on around me. It’s the opposite that happens in neurotypical people. I’ll be listening intently and understanding completely, but if during my turn to talk, I can’t focus on getting my words together. Typically, the breakdown goes like this: first, I start listing off all of the things around me that are distracting, like noises, smells, brightness, etc. if it’s a lot, the tone of my voice changes and becomes a little aggressive. I didn’t use to think anything of it until I realized that was the reason people didn’t know I was a nice person. I get very nervous talking because of that now. I like people thinking that I’m nice. Wearing sensory dulling aids, like sunglasses, earplugs, and long-sleeved shirts help keep me focused on the person talking to me.

I learned about autism when I was 24. I had the phrases that I would say to common reactions to me, and I didn’t think anything of it. One day, after a particularly lousy interaction, I googled “not good at socializing” and found quite a few mental health resources. I stumbled on a page about autism, and my world went for a spin.

At first, I was in denial. This denial phase lasted for about a year. I learned little random things about autism, and I would tell myself I didn’t do them, so that meant I didn’t have it. I figured I wasn’t THAT different. I had some social skills, I just needed to get better, and just because I didn’t make eye contact didn’t mean I had autism.

That year was a tough year for my health. I was gaining weight, experiencing joint pain, headaches, fatigue, random rashes, and LOTS of stress. I would break out into hives if I got too stressed out, which seemed to happen over any little thing. I decided it was finally time to see a therapist. Not because of that autism business, I didn’t have autism, I thought, but just because I was so stressed by life and not being able to keep up. I was feeling pretty down about myself.

After a few visits with my therapist, she asked me if I’d ever heard of autism. We discussed it, and she advised me to look into the community. I got my diagnosis confirmed by a psychiatrist.

I’m still figuring out my life on the spectrum. I would say it was a little bit of a relief, but a massive jolt to reality. I had no idea I was as different as I am. When I was a kid, people told me I was special, but I thought it was one of those things they said to kids to make them feel good. I never took it seriously. I waited to tell my mom about my diagnosis, and when I told her, I started by telling her first that I was different. Like really different, according to my therapist. She told me that she knew. That was mostly the relief. It also made me feel self-conscious because I realized it wasn’t everyone else; it was me. My perspective changed. My diagnosis made me more self-aware.

My brain processes emotions based on words, so eventually in conversation, words start to mean nothing. I start getting anxious if I still don’t understand, and I notice this is beginning to happen. Combine this with sensory distractions, and I might shut down, have a panic attack, or maybe even have a meltdown. There is a reason that people with autism feel shame and humiliation when we experience meltdowns.

Meltdowns happen when we experience sensory or social overload or both. It’s difficult for us to control our emotions at that point, so the more emotional intelligence we have, the less likely we are to be a danger to ourselves. Self-hitting, crying, screaming, and yelling is examples of this harrowing and embarrassing experience.

I struggle with feeling proud and frustrated. Proud to be a part of a community based on inclusion, self-awareness, and acceptance. Frustrated that minute things out of my control affect what I can and can’t do at times. I find myself experiencing emotional awakening more times than I thought possible. There are so many layers to human emotion, and it’s so difficult to keep track. There is something to feel that I never considered before my diagnosis, though: being interpreted as friendly feels good.

Autistic Masking and Being Hispanic

There was a moment right when I first realized that I was autistic. Like a bright, shining bulb. And once that bulb was lit, it lit up a maze I didn’t even know I was in. A tangle of emotions and discovering meaning within myself that I continue to navigate today. However, my internal discovery doesn’t change my outward appearance. This ‘eureka’ moment has led to so many answers to situations in my life, but it has also led to questions.

For most of my life, I’ve been a coded but open book. My emotions were a vulnerability that I bottled up, then shelved. I had a front that wasn’t really a front. I was cranky a lot and spoke in a verbally aggressive tone even if I was saying something nice. I spent a lot of time not knowing what was going on because my attention was continually shifting to my environment, and spent forever wondering what I was missing to be considered ‘nice.’

When I typed a social situation in Google, I was met with a plethora of forums, articles, and groups focused on single issues similar to the social situation I typed in. In forums, strangers comment on the person’s situation, and I would glean from those comments and finagle an answer to my situation.  Each situation solution became a patch that was a social opinion of me, pieced together like a patchwork quilt. Sometimes I would ask my friends what particular actions or phrases meant to be better at socializing. It took up all my energy, and I still sucked.

I cared about social situations off-and-on depending on the situation until I understood why it was so important in the first place. There isn’t an economic logic to feelings, but there is an emotional logic. For example, if you hit someone, the emotional-logical next action is that the person will be angry and hit you back. Whether or not that is the case depends on the emotions of the person you hit and outside factors. Depending on the context of who you hit and how you hit them, it might not even be a problem, like in a boxing match. Another example, if you hurt a friend’s feelings accidentally, the emotional-logical next action would be to apologize. Again, whether or not you actually need to apologize depends on how close you are to the friend and the severity of the hurt feelings. Some people feel better with just knowing you’re remorseful.

Emotional logic got more complex, the more I learned about human nature and needs.

Masking is pretending to know what’s going on in a conversation involving facial cues, it’s acting “normal,” it’s hiding sensory pain, so people don’t make fun of you. It’s the struggle with coming up with the “right thing to say” all the time because it seems that everything you say is wrong. It’s someone you’re not so people will accept you.

My ‘patchwork quilt’ of outward responses to society was actually part of the foundation of my mask. It’s a mask I still put on in unfamiliar territories, like camouflage in a recon mission. Continue reading

#BoycottToSiri and Autistic Civil Rights in the Media

“To Siri, With Love” is a memoir written by Judith Newman about her life raising an autistic boy. It’s a New York Times best seller, with rave reviews from people like Jon Stewart. The book has been described as moving, honest, and funny.

My feelings on the book started at zero. I’d heard about the book, but I had no interest in reading it. Like most of my fellow advocates and activists, I became interested when I saw the #BoycottToSiri tweets from Amythest Schraber.

I haven’t read the book, but I’ve seen snips and clips. Those clips and snips have been horrifying to read. It’s enough to make me question how the book got published.

The common theme of those excerpts is that she continuously makes fun of the autistic experience at the expense of her son.

It’s not so much that I’ve been hesitating to speak on this. Ask my husband, it’s all I’ve been talking about.

It’s that I’m angry, and when I speak out of anger I usually set the conversation on fire with insults, disrespect, and overall meanness. That’s a weakness of mine that I’ve been working on.

I don’t want to hurl insults. I don’t want to disrespect anyone.

I want something to be done. I look around, and I see my neurodivergent family being affected with me that this book was allowed to be conceived.

Think I’m exaggerating? Check out these links. Go ahead, I’ll wait:

http://tagaught.net/boycotttosiri-1/

http://www.autistichoya.com/2017/12/boycotttosiri-letter-to-judith-newman.html

https://boren.blog/2017/12/02/an-actually-autistic-review-of-to-siri-with-love/amp/

https://beckettsthoughts.tumblr.com/post/168304914386/the-problems-with-to-siri-with-love

https://bookriot.com/2017/12/05/an-open-letter-to-harpercollins-about-to-siri-with-love/

https://www.autismforums.com/threads/people-on-the-autism-spectrum-are-boycotting-to-siri-with-love.22974/

https://americanbadassactivists.org/2017/12/02/an-actually-autistic-review-of-to-siri-with-love/

https://americanbadassactivists.org/2017/12/06/bookriot-an-open-letter-to-harpercollins-about-to-siri-with-love-boycotttosiri/

http://www.squidalicious.com/2017/12/boycotttosiri-needed-to-happen-because.html

https://www.bustle.com/p/why-i-believe-to-siri-with-love-by-judith-newman-is-a-book-that-does-incredible-damage-to-the-autistic-community-6780420

https://somegirlwithabraid.wordpress.com/2017/11/29/autistic-moments-autistics-should-be-sterilized/

https://elizabethroderick.wordpress.com/2017/12/07/review-of-to-siri-with-love-by-judith-newman/

https://aspi.blog/2017/12/08/links-pics-and-a-thunderclap/

https://writeabledreams.wordpress.com/2017/12/06/an-autistics-thoughts-on-to-siri-with-love-by-judith-newman/

https://themighty.com/2017/12/to-siri-with-love-boycott-judith-newman-autism-vastectomy/

http://talesbytheunexpected.be/books/book-analysis-to-siri-with-love-by-judith-newman/

https://culturess.com/2017/12/07/autistic-readers-boycott-to-siri-with-love-autism-moms-love-letter-to-her-son/

http://observer.com/2017/12/autism-to-siri-with-love-book-criticism/

http://www.thinkingautismguide.com/2017/12/why-to-siri-with-love-is-wrecking-ball.html 

https://visualvox.wordpress.com/2017/12/12/the-virulent-tosiriwithlove-debate-our-very-own-autistic-zombie-movie-drama/

https://navigatinglifemyjourney.wordpress.com/2017/12/10/stand-with-us-boycotttosiri/

https://sg.news.yahoo.com/people-autism-spectrum-boycotting-apos-195931360.html

http://unstrangemind.com/an-open-letter-to-jon-stewart-concerning-boycotttosiri/

It’s a lot, right? Is it overwhelming? It should be.

I myself have been hesitating to read the book. I’ve been actively taking part in the boycott and haven’t emotionally invested in obtaining a free copy yet. I’ve been repeatedly triggered with clips and snips in the #BoycottToSiri tag on Twitter though, and it’s shaken me to my bones. When I read it, I’ll do another post/book review.

This book is peppered with insults and bad ideas disguised as humor that read a lot like subliminal messaging: “How do I say, ‘I’m sterilizing my son’ without sounding like a eugenicist?” By itself it’s disgusting, but read the passage that follows and one could almost think that this line of thinking is acceptable and not actually eugenics (except she’s only lying to herself because it still totally is). Eugenics. In 2017. That’s incredibly dangerous, especially to the easily influenced who might explore sterilization options in their states or other countries.

There was another bit that struck me; it’s the part where she describes Gus’s reactions to thunderstorms. She tells us how he hides in the closet.

I felt a pang of recognition, I used to hide in the closet during thunderstorms! All the way up until 11 or 12! It wasn’t so much that I was scared of being flooded on, or anything like that, it’s that thunderstorms are LOUD. It was much quieter in the closet and less stimuli. That much sound is bound to wake up fear in a person who’s brain responds to the environment.

Anyway, she follows up that tidbit about her son’s fear with saying that every time he does it she wishes she had done pregnancy yoga.

Cue the sound of a stricken nerve, and a series of questions: Did my mom ever feel that way about my unreasonable fears? Is that what goes through the minds of people when an autistic person is startled by the environment, apathy? Is that apathy toward autistic people the reason this book is a best seller? Why isn’t the reaction to help Gus not to be afraid of thunderstorms?

I feel that way about every line that I’ve read that’s been posted by someone else. I question what empathy means to those people. If we can be seen as unfeeling, unworthy of consideration, unable to comprehend exclusion, how are we the ones who are unempathetic?

I look around and I see waves of people scurrying behind the anti-bullying movement, with no real, emotional understanding of what bullying is.

It’s not just physical fights. It’s not just emotional abuse. It’s pointing and laughing. It’s giving negative attention. It’s writing a book about autistic people, without autistic people, at their expense.

It’s devastating to me that this book is a best seller. It’s not just the author’s fault. She’s a product of autism propaganda, a mouthpiece for the neurotypicals who think they need a translator for autistic people. No, this is bigger than her.

This is a social failure. Neurotypicals already think negatively of autistic people.

To write a book about how hard it is to deal with your autistic son, detailing and dissecting his “weird” habits as though he were something to be studied. Then to say “[the book] wasn’t written for autistic people”. The nerve! Doesn’t she understand that this is a DIRECT EXAMPLE OF SOCIAL EXCLUSION? This the worst type of bullying!!! And to add that it’s supposed to be funny and we don’t get the joke

Sit down. I’m about to rap some knowledge.

The number one killer of autistic adults is suicide. As many as 67% of us have experienced suicidal thoughts. For most of us, they generally stem for a desire to be accepted for who we are: flaws, special interests, and all. Acceptance is a basic human need, even in autistic people. How does this book, which normalizes neurotypical negative thoughts about autistic people, make room for acceptance?

Why is it that neurotypicals don’t understand that they are just as perplexing to us as we are to them? Why don’t neurotypicals understand it’s harder to ACTUALLY deal with excess stimuli and allistic nonsense that it is to WATCH somebody deal with excess stimuli and allistic nonsense?

One has to wonder what the agent, the editor, the publisher, were thinking when they allowed this travesty to waltz out of their publication and into the hands of hungry readers curious about a love letter to a machine. Dollar signs, probably. Autism is a hot topic, with Atypical, The Good Doctor, Matthew Mcconaughey, Jon Stewart, Night of Too Many Stars.

The platform is seriously lacking autistic voices. It’s lacking autistic women’s voices. It’s lacking autistic people of color’s voices. It’s lacking autistic LGBT+ voices. We don’t need books written by people like Judith Newman.

We need to tear down the social construct that allows for people like Judith to speak over autistic people, and rebuild it with autistic voices front and center.

Autistic voices need to be in the media, politics, comedy, literature, Hollywood.

Are you autistic and thinking of running for office in 2018 or 2019? Do it.

Start writing, start speaking. Accommodations, be damned! Whether or not it’s too loud, too bright, too much, we are stronger together than we ever are apart. We need to boost each other up, and demonstrate how to respect an autistic person for who they are, regardless of “functioning level”.

Autistic people need to create the status quo. Get involved, speak for yourself, and then listen. We need to amplify each other’s voices. We deserve to speak about how we get treated, where we want research to focus, how we can be included in society, how we’re portrayed in the media and television.

Our siblings, parents, lovers, spouses, friends, we need you now more than ever. We need you to be better than Judith. We need you to appreciate us for who we are, respect our special interests, respect our autonomy, love us, stand with us, and give us the mic instead of answering for us.

It’s our time to speak now.

 

 

 

Beating Self-Isolation and Negative Thoughts

I’ve been secluding myself from my friends and family and have been unusually internet quiet.

I haven’t really been texting back, I haven’t gone anywhere. I see my friends once every couple of months, I don’t really talk to anyone at work (save for a funny comment every hour or so), I haven’t posted on Facebook, my twitter feed is basically retweets, and my Instagram has been stagnant (save for a recent post where my husband and I suggested we were going to steal a child).

I haven’t really written too much, and I haven’t painted anything since that apple in August.

I’ve basically disappeared.

My husband has been worried about me, and I’ve decided to say something about my silence.

I’ve been depressed.

I haven’t had the will to reply or create. My thoughts are a carousel of self-doubt, panic and anxiety, and every time I would get an idea, I would tell myself that I don’t have anything to say on the subject.

Except that I’ve had loads to say about a lot of topics and I’ve been oppressing myself.

I’ve been silent because I don’t like myself. I crave the self-acceptance I had when I started this venture, and although feelings are a choice, I haven’t been able to jump out of this spinning wheel of madness.

I tell myself that I can make a difference with what I have to say, only to reply to myself that my viewpoint doesn’t matter.

I’ve been struggling with thoughts that I don’t matter.

Social situations have been making me extra nervous, and I hesitate to engage. I don’t necessarily wish to be sought out, as I feel like my feelings are contagious, and I would hate to spread my negativity.

My period of artistic solitude has turned into a maddeningly depressive isolation.

Shaking myself out of it isn’t doing any good, but I wanted to tell everyone who feels this way that you’re not alone.

It’s dangerous to act on the feelings that self-imposed isolation brings with it. If I acted on the thoughts that I don’t matter, my actions would surely lead to my suicide.

It’s about fighting yourself, for yourself, until you win. Sometimes to win you need medicine. Sometimes you need therapy. Sometimes you need friends and family to center you again. Sometimes you just need time to collect your good thoughts and put your brain back in order.

Whatever it is you need to win, seek it out. You’re worth it.

Isolation breeds social anxiety, which makes socializing feel awkward, and makes you want to socialize less and feeds the thoughts that come with isolation.

To beat the crippling anxiety of wanting to socialize and the debilitating self-doubt, you have to push yourself out of your comfort zone.

For me, pushing myself out of my comfort zone is writing about why I haven’t been writing and pushing myself to do the things that need to be done. The more productive I am, the better I feel about myself and the less likely I am to fall into old patterns of seclusion.

If you or someone you know is having suicidal thoughts, you’re not alone. Call the Suicide Prevention Lifeline and speak to someone.

How To Hire Someone With Autism

Less than a third of all autistic adults are employed, either full-time or part-time.

Less than a third. 

That means out of 3.5 million people with autism, only about 1 million of those people are employed. Most of them aren’t making enough money to live on their own. And it doesn’t look very good for the young autistic workforce.

That doesn’t make any sense. There’s literally science that says we can work and we love it!

So why won’t more people hire us?

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The Office Environment

The workplace is a beehive. Busy, busy, busy, all around you people walking to and from the copier, shuffling papers, keyboards clicking. The bright florescent lights beaming into your eyes paired with the gentle hum of everyone trying to talk low into the phone. Small talk is the only talk at the office. Cheeky smiles, ignored requests, unanswered e-mails and phone calls are just a few of the subtle, passive-aggressive ways people at the office get under each other’s skin.

People with autism don’t do well in these types of environments. Too loud, too bright, too mean. I myself work in this type of environment. I love my job, but I wear sunglasses and headphones on a daily basis. They were willing to accommodate my brightness sensitivity with light cover and a doctor’s note, but too many people complained that the light cover was too dark. If I answer a question too sharply, or respond too honestly, I get on people’s s**t list. They watch me like a hawk for about a week, and then they forget.

It sucks. I’d rather work from home.

Most employers don’t know how to treat someone with autism. Even less actually employ them. People fear what they don’t understand. We are how we are, and that’s not going to change. If we can’t change, that means employers have to.

It’s not acceptable that so many of us aren’t working when we have marketable skills and the only things standing in our way is HR’s interpretation of us. So, here’s how to hire someone with autism:

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How to Interview an Autistic Person

Don’t focus on eye contact, demeanor, tone of voice, none of that. Can the person you’re talking to do the job you want them to? Don’t worry about whether or not the person fits in with your team. If your team lacks people with autism in it, you’re not getting a full perspective anyway. Maintain an open mind, and have patience with any questions, stuttering, long winded answers, fidgeting, etc. People with autism have a knack for rote memorization, and make excellent resources in the workplace once we know the ropes.

Interview us like normal people, just be aware of our atypical movements and verbal communication skills. Just because we’re having a hard time talking to you, doesn’t mean we can’t do the job.

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How to Provide Reasonable Accommodations

Reasonable accommodation means certain things in the workplace environment can be adjusted to make the person with autism more physically comfortable. The less stimulating the environment is, the less likely we are to become overly stimulated and need breaks, and the more likely we are to make you tons of money.

Reasonable accommodations can include numerous compromises, like needing feedback regularly for job performance, requiring a 5 minute break every hour, light covers, heads-up for company changes, etc. It’s important to view these accommodations as compromises instead of negative aspects of hiring someone with autism. They aren’t negative. It doesn’t cost you anything to give your employee a few extra five minute breaks.

There are certain factors that must be considered when considering reasonable accommodations. These include the actual job itself. For example, light covers aren’t a reasonable accommodation if the job is predominantly outside.

Talking to the autistic employee is the best way to figure out what accommodations are necessary. Some of us have dulled senses instead of hyperactive ones. Some autistic employees don’t even need accommodations, depending on the job. At my job, my reasonable accommodations include letting me wear my sunglasses inside and sitting me in a darker area. In no way does this disrupt anyone, and without the light distractions I can see things so much faster, and therefore, work quicker. Productivity for the win!

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How to Give Performance Feedback

Be very clear! Make sure you have metrics in place to measure performance. Autistic people need clear metrics and expectations. We think completely differently from you, and that’s crucial to remember. For example, First Call Resolution numbers must be high, Customer Callbacks must be low, etc. My director gives my team weekly goal sheets and accounts list, and that helps me know what she’s looking at so I can work it. She’s a very intelligent lady, and I trust that she’s looking at the right accounts. If I didn’t trust her, I wouldn’t be working what she gives me, and I would be working on what I thought would bring us more money.

That said, it’s also super important to set attainable goals, and communicate them to us in a way we can understand. This will keep us on task with where our performance is at any given time, and will help us to work smarter, and make you money. Along with setting those goals however, you may need to check in a little more often than you normally would to make sure we’re on task.

What to Do When Your Autistic Employee is Socially Stepping on Toes

When I first got hired, before my diagnosis, before I was nice, I used to have problems with people in my department. Okay, all the departments. I was very nervous about making good impressions, but I didn’t have the skills or know-how to make one. My desk was (okay, is) filled with little Post-It notes to remind myself of basic social skills like, “Am I taking this wrong?”, “Humility – don’t be so prideful”, “Don’t forget to smile at people”, “People appreciate acknowledgement”, to name a few.

If your autistic employee is stepping on people’s toes, you need to let them know. We don’t do well with subtleties, so bluntly tell us that you’ve heard around the office that people are complaining about us. Tell us point blank how we can rectify that behavior. For example, if your employee is cutting in line at the fax machine, you can tell them, “People have complained that you are jumping the line for the fax machine. When you need to fax something, make sure there is not someone who was there first.”

My director gave me a book called, “What Got You Here, Won’t Get You There.” It was in regards to my behavior. I know because I read it, but I didn’t understand why she gave it to me. There are like, 20 habits in there, and I did a little bit of each, so I wasn’t sure if it was my whole personality that was off-putting or if there was something specific about interacting with me. With that book though, I learned about workplace self-awareness, and ultimately my temperament started to relax.

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Hiring people with autism is a very smart move for your employee base. Not only are you getting a person who isn’t interested in office politics or drama, you’re getting someone who wants to WORK. You’re also getting a new perspective. Working with people with autism gives a fresh outlook on what exactly is important in the job market, and I can attest to this, soft skills CAN be taught with the right training. I’ve been told many times by various supervisors that they wished they had 10 of me. I work hard, and even though I can be a little short-tempered on occasion doesn’t mean that I can’t make lots of money with my skills, and in the end, isn’t that what we’re all in business for?

 

Aspie Spouses: How to Show the Neurotypical in Your Life You Love Them (by Using the Five Love Languages)

I remember when my boyfriend (now husband) told me he couldn’t feel my love. I had no idea what he was talking about.

“I do love you,” I said matter-of-factly. “What does that even mean?”

I panicked. How can I get him to feel my love? I was touching him, we were spending time together, what more did he want from me?

“I don’t know,” he said softly and sadly, “I just don’t feel it.”

“Okay, well, stop,” I said stupidly. I wasn’t very good at making people feel better then.

He didn’t say much more on the subject, but that conversation stuck with me. I wanted to be with him, and I wanted him to know, so I set out on a mission to get my boyfriend (now husband) to feel my love.

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I had no idea where to start. I knew that the love was there, so I decided to start with a google search, and that’s where I found out about this nugget of relationship gold: The Five Love Languages.

A series of books written by Dr. Gary Chapman, The Five Love Languages, give specific details of how to show your loved ones you love them in ways they will feel loved.

You see, neurotypicals have different ways of wanting to be told they’re loved.

I always assumed that the words “I love you” meant that he would understand that I loved him, but some people like actions better and others like gifts and stuff. So I took the Five Love Languages test to see if it was right about me. It was. I like physical touch: cuddling, heavy pressure (but not light touches), and being squeezed. I had my boyfriend (now husband) take it that same night.

It was a floodgate. I learned so much about him. I didn’t realize we didn’t speak the same love language, and the way he wanted Love was not the way I was showing him I loved him. His love language is Quality Time. I had to Google what that means, but don’t worry, I’ll tell you.

Why Romance is Important to Your NT Spouse

Intimacy is one of the most important aspects of a relationship because it provides a safe closeness between two people. Intimacy is essential to every relationship. But what is intimacy, and how can you get closer to your spouse? To start, any expectations that you or your spouse have for each other must be verbalized. Autistic people process emotions through words and not subtle cues, and that makes it so much more important to communicate with each other. It’s impossible to be a team if the players aren’t on the same page.

The best way to increase intimacy in your relationship is to increase romance. But how do you know which romantic ideas are going to make your spouse happy? That’s where the Five Love Languages test comes in.

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Getting Started 

I suggest both of you start by taking this test first. I recommend you take it by yourself, but they can take theirs with or without you, as long as you both come together when you finish. I’ll tell you how to compare your answers. Set aside time for both you and your spouse to sit together with a pen and some paper.

As the aspie, before you compare your answers, I should warn you that this conversation is an emotional minefield. It’s an explosion of pleasant emotions, this is true, but an explosion none-the-less, and you need to know about your own preferences before you can learn about your spouse’s. This will help you from getting emotionally overwhelmed and shutting down during the conversation. Know what you want from your spouse and practice communicating that for when the time comes to talk and exchange answers.

Once you’ve both completed the test, ask each other the following questions:

Was the test spot on about what your love language is?
Is there anything I do now that hurts your feelings?
Is there anything I do now that makes you feel loved?

When you compare your answers, make sure you take notes of what your spouse says. Listen very carefully for things your spouse says they like, want more of, want less of, and would like to do or try, and then write that stuff down. Don’t hesitate to ask them to wait while you write. They love you, and they’ll be happy to wait.

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Here is a breakdown of what each language means, and examples of speaking in that language:

Quality Time

Quality Timers enjoy feeling like they have your focused attention. Eye contact is difficult for us aspies, but they extra love it, so if you can stand it for a little while, I highly recommend doing it whenever possible, it makes them smile and feel good. If it burns, though, don’t worry about doing it; there are other ways of showing them your attention, like conversations and dates. Make sure to ask about your spouse’s day. Here are 36 questions you can ask your spouse that are proven to increase trust and intimacy.

Physical Touch

Physical Touch doesn’t mean just sex. Physical touch is a nonverbal sign of love: a shoulder rub, holding hands, touching legs, footsie. You don’t need a lot of words for this one, but if your spouses love language is physical touch and touching is a no-no for you, then you have to ask yourself how much of a compromise you’re willing to give. It’s vital that you are aware of what you’re ready to tolerate and what you aren’t. If holding hands with your spouse isn’t painful and just annoying, then think about how good it makes them feel. Compromises should include comfort for both parties.

Gifts

Gifts can be from anywhere as long as they are from your heart. If your spouse likes clocks, make one and give it to them. If they like plays, buy tickets for a date night. Use a calendar to plan out gift-giving. Start with once every couple of weeks and adjust as necessary. Don’t forget to give gifts on special occasions. Make sure that if money is an issue for you that you don’t spend too much. Here are some excellent ideas (here also) if you’re not sure what to give.

Words of Affirmation

Words of Affirmation means that your spouse likes to hear how much you love them, what they mean to you, and how much you appreciate them. They also like it when you say beautiful things to them about how they look or what they can do. This one can be tricky for us to do randomly because of our communication problems. Tell your spouse something nice and thank them whenever they do something that benefits both of you.

Acts of Service 

Acts of Service means your spouse likes it when you do stuff with them and for them. This shows your spouse you care. Easy ways to do this would be to take your spouse’s car for a wash, gas, or maintenance. You could wash the dishes when you see the sink is full. Breakfast in bed is another good one. Most Acts of Service don’t cost a lot of money, so if that’s an issue for you, you’re in luck.

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One thing to keep in mind if your spouse is talking using sharp words or a harsh tone: don’t instantly assume they want you to fix their issue. That means don’t ask them what they want you to do about their problem. Ask first if they are just venting. Venting means they want to talk, but they don’t really care if you have anything to say. Neurotypicals like to speak out loud when they are upset, but don’t necessarily want an answer to their problem.

So when your spouse confirms they are venting, don’t offer a solution. Offer sympathy instead. “I’m sorry, how did that make you feel?” can go a long way. When neurotypicals say we don’t have empathy, they really mean we don’t show sympathy, so this one little thing will get you far in social skills, not just conversations with your spouse.

Relationships between neurotypicals and aspies are very complicated, with lots of communication and lots of compromise. The neurotypical needs to educate themselves on autism. Still, it’s equally essential for the aspie to educate themselves on neurotypicals if the aspie wants to be in a relationship with one. An AS/NT marriage is a marriage of two separate worlds, and learning about each other’s world in a positive environment allows for self-awareness, open-mindedness, and lots of love, as long as both parties are willing to put in the work to be together and love each other.

Quiz: http://www.5lovelanguages.com/quizzes