April 2nd is World Autism Awareness Day, and to kick off our monthly theme of neurodiversity, Corinne, our resident expert and an Aspie herself, sat down with some other group members to talk about life on the spectrum.
Autism is a developmental disorder. The causes are unknown, but discoveries have recently been made into genetics and environmental factors. People born with autism experience difficulties in speech development and social interaction, physical “ticks” such as flapping hands or tapping feet, and specific, obsessive interests. Some autistics also have comorbid conditions such as OCD (Obsessive Compulsive Disorder) or ADHD (Attention Deficit Hyperactive Disorder).
When were you first diagnosed?
Corinne: My mom, a child psychologist, knew that I was on the spectrum from the time I was about two years old, but every time she took me in to get evaluated, the doctors all decided I wasn’t autistic because I was too high-functioning to fit into the definition of classic autism. When Asperger’s finally became a diagnosis in the early 2000’s, I was eleven, and she finally was able to get me a diagnosis and ask for services from the school.
Cassandra: I only used to share the following with people I trust. But now, circumstances have changed. When I was fourteen, I got into an altercation with another student at school, though up until that point, I had been the well-behaved type. After that, my teachers pretty much forced me to get diagnosed and get me certified as a special needs student through a psychiatrist. I had no say in the matter.
Melion: Actually, I had this long response all written up, and then realized that it got into far too many personal aspects of my life, and I thought, “Dude, do you even want to share that stuff? Also, who the heck cares about that?” and decided I’ll give the short, uninteresting answer. I received an informal diagnosis as part of a clinical university study. The aim of the study was to develop a diagnostic rubric for autism in adults, but all they could tell me was “Yeah, you reflect the characteristics we’ve commonly observed among adults with Asperger’s. That’s all we can do for you. Now please dedicate the next six months of your life to coming in whenever summoned.” I eventually dropped out of the testing, but that’s a story for another day.
Louise: I don’t have a formal diagnosis. I was tested in first grade (1989-90) and found to have dysgraphia and underwent a year of therapy. Nowadays, my sister, a teacher, will often ask me questions she uses to test her understanding of spectrum children. Her perspective is that if I was in school today, I would be tested for autism spectrum disorder.
Katelyn: I was diagnosed about five years ago, but my parents had suspected long before that. It wasn’t until I was already an adult that I decided I wanted to see if I fit the official diagnosis for Asperger’s Syndrome. Turns out, I do, though it does make me wonder if I was misdiagnosed with ADHD as a kid or if I really have that as well.
What are some of the challenges of being on the spectrum in terms of everyday life?
Corinne: Not being able to make small talk or get along with others naturally. I’m a teacher, but I sometimes have trouble relating to my kids or knowing what to say in certain situations. Like, I get flustered when I have to break up a fight, or I don’t know how to talk to my kids when it’s non-class time, so I just don’t say anything at all.
Cassandra: Every day is a challenge; when I was little, I wasn’t made aware how to overcome it. I often asked my parents why they brought an imperfect me into a fallen world—I mean, if they loved me, they shouldn’t have been so merciless as to allow me to exist and face cruel reality, right? — though I am determined not to make this disability impede my path to success. To this day, I still have not grasped the ability to respond quickly or wittily to certain questions/answers. I also get misunderstood by people easily.
Melion: Not knowing if what I’m about to say is too weird. I have a warped sense of humor, and I don’t always know when it is and is not ok to deploy it, so I often settle for keeping my mouth shut which makes it easy for people to dismiss me as shy. Also, eye contact. My grandfather taught me when I was little how to make eye contact, but as a result, I often am too intense with my eye contact and have to remind myself to look away.
On the positive side, my colleagues have often commented over the years about how I seem able to keep cool when in the face of stress. They clearly don’t live with me. Having to work on self-awareness has also taught me to be aware of how what I’m about to say or do will impact others, and it’s helped me develop a certain amount of social decorum so that, while I might seem cold in social settings, I’m not prone to breaches of etiquette.
Louise: I have trouble understanding humor and often laugh too late or not at all. I dealt with significant anger issues through all my schooling. I don’t always understand what is happening in social settings, but I do not have any anxiety about being in a social setting.
I also have some noise sensitivity issues, and I also have trouble saying no. I avoid eye contact or give too much eye contact, and I’ve never learned an in-between. Luckily, at my job, I can use the excuse of taking copious notes in order to avoid eye contact.
Katelyn: I probably get told once a week to “turn the volume down,” because when I’m excited or happy, I can’t always tell how loud I’m being. I have a tendency to take people literally, which means sometimes I miss jokes or misinterpret what someone wanted me to do. I also have a really hard time still with prolonged eye contact. I seem to live in this land of extremes. Either I end up staring, or I don’t look at them at all.
Asperger’s/autism is a social disability. Do you think this has any effect on your writing?
Corinne: Most definitely. I have a lot of trouble writing subtext because having Asperger’s often means you have no guile, so my characters also tend to lack ulterior motives. Oftentimes it won’t be a problem, but sometimes I’ll write a scene one way, thinking it reads completely naturally, and my neuro-typical critique partners will point out a piece of dialogue or an action and mention that it seems too convenient for that character to do/say that at that point.
Cassandra: Despite being told me my characters are characteristic of Asperger’s, I still don’t know in what ways the condition manifests itself through my characters, and I have yet to find out exactly what has gone wrong.
Melion: Yes, it certainly has. Writing emotion is . . . difficult. As I explained to a friend, I understand that writing, “[Character] clenched her fist as [Antagonist] spoke,” shows that the character is angry. What I have trouble with is determining if that anger is appropriate. In other words, would a “normal” person respond to being in the character’s position with anger? Or would they be expecting that the character be sad? And, if the character is sad, should the character cry? Essentially, I find I have to spend a lot of time observing people in real life to figure out how “normal” people process emotion.
Louise: It can be both a strength and weakness. Every writer has challenges they have to work around. As a child I learned to read emotions through physical actions. That means I can pull on those learned attributes for characterization. My non-verbal emotions in writing are typically acceptable. I feel my own emotions differently than many, so many times my “old standby” descriptions sound fresh to others because of how I think, but my beta readers often tell me what my stories lack is the internalization of emotion. That’s where I struggle the most.
Katelyn: I’d say it does. My characters notice waaaay too much but don’t show much emotion. It might just be that I underreact to some things while others I’m overstimulated by, so it creates this imbalance in areas.
What is one thing you wish neurotypicals (non-disabled people) understood about having a disability?
Corinne: That we’re also people with feelings who deserve respect. It makes me really uncomfortable when people use the “r” word around me, and especially when they don’t respect my feelings about it when I ask them to stop. Be our allies, not our enemies. Or if you can’t be our ally, then at least stop saying and doing things that disrespect us.
Cassandra: Despite being wired differently, we’re not second-class people who want to be treated in any way that inspires jealousy from neurotypical people; we look for life, liberty and the pursuit of happiness even though our circumstances and internal make-up are not as advantageous as theirs are. I can’t control your thoughts or feelings towards me, but I can present myself with the attitude of a winner.
Just like in the lyrics of Colors of the Wind:
You think the only people who are people
Are the people who look and think like you
But if you walk the footsteps of a stranger
You’ll learn things you never knew you never knew
Stay hungry. Stay foolish. Especially when it comes to learning about us.
Melion: I don’t know. Years ago, I went to a support group meeting for adults with high-functioning autism (I was directed there as one of the few resources I received as part of the above-mentioned study) and the us-vs-them mentality of the environment made me uncomfortable as I sat perched on my chair silently watching the whole thing. Discourse de-evolved very quickly into a group of adults having a diatribe against neurotypical people.
I understand the anger. I’m old enough that it was acceptable for my first-grade teacher to call me a “retard” in front of the rest of the class and say to the teaching-aide (a fellow student’s mom), “Don’t bother working with her on reading–she belongs in special ed and her parents are being difficult. She can’t learn to read.”
Or the time some of my coworkers when I worked for the state had a conversation–in the office, mind you–about how autistic people are all violent sociopaths and should be rounded up and kept away from society. Forced sterilization was definitely mentioned. I was too cowardly to out myself, but I did manage to ask them to show me the research on which they were basing these calls for forced institutionalization. My coworkers dodged, I pushed, they dodged, I insisted. Finally, I just said, “Ok, fine. You win. Based on absolutely no evidence, we should start imprisoning innocent people and forcing them to be sterilized. I can’t imagine where I’ve heard that before.”
Education on all sides is ultimately the key, but even then, education works best when it appeals to the inquisitive side of our humanity. If I come at people from the moral high ground of demanding that they educate themselves as though it’s some sort of punishment, such a hostile approach tends to cause people to react negatively.
Louise: Just because I don’t pick up your emotions doesn’t mean I don’t have my own. Just because some of my mannerisms (the way I hold my hands/head, the repetitive self-soothing motions I use, and the reduction of stimuli around me) are slightly different, everyone has their own qualities that make them unique. Mine just happen to also help with my mental health.
Katelyn: That I’m not like what you see in the media. Yes, it’s a sliding scale, so naturally some people are on the extreme ends of that scale, but I think a lot of us are way more integrated into mainstream society than most people think. People are almost always surprised when they find out I’m on the spectrum because I’m so “normal.”
I mean, yeah, a lot of us don’t like change and we can have a hard time with it, but we’re not completely inflexible and we can adapt. There’s this really pervasive idea though that we’re all like Sheldon from The Big Bang Theory, but I don’t think I’ve ever met a fellow adult on the spectrum that acts like that.
What do you predict the future will be like for adults on the spectrum?
Corinne: In an ideal world, all young people on the spectrum would receive the services I did in school and after graduating. Things like applying for college, searching for jobs, job interview practice, etc. so that they can become successful individuals who don’t have to rely on their parents for the rest of their lives. For adults who were diagnosed later in life, ideally, their diagnosis would perhaps grant them access to services that vary from one person to another: counseling, perhaps, or job search strategies, life skills, etc. However, the reality is that young people are receiving a lot of these sorts of services, but older folks who were diagnosed in their twenties, thirties, forties, and even later don’t have very many services available to them because the opinion is “it’s already too late for them.” All the funding for such services are being directed toward young people.
Cassandra: It can go two ways. We may remain a minority, and we may still be marginalized because we’re not predisposed to neurotypical social activity. Even though we may be ambivalent about speaking up, at this stage this is the only thing we can do to better our lives and those around us. When we suffer, our loved ones suffer too.
Melion: Uh . . . I don’t know what the future will look like (I know, that’s a dull answer from a speculative fiction author, but my answer involving cyborgs and lasers seemed too flippant for a serious discussion). I know that I’d like to see more understanding within the psychological community towards adults seeking a formal diagnosis. I have numerous reasons why I want a diagnosis “on paper,” and it frustrates me that, at least in my experience, adults seeking a formal diagnosis are treated as though we’re inconveniencing the psychiatrist or psychologist because we want to better understand ourselves. Or because we want our insurance to cover the fees associated with accessing resources.
But outside of the psychiatrist’s office, I just want to be seen as a normal person because, well, I am a normal person. I might respond differently to the world around me, but take a hundred people, put them in a situation, and you’ll get a hundred different responses.
Louise: The future is now! Oh, wait, um, I guess I’d like to see spectrum acknowledged but integrated. There are levels of spectrum disorder which can adjust and have productive lives. The spectrum people I know range from those in very social occupations like my own to ones with little outside contact. Often the difference between success and failure in the less severe forms is early adaptation and expectations. If you expect us to fail, we will. If you expect us to succeed, we can. In the more severe forms, acknowledgment would be greatly appreciated. There are many invisible disabilities, i.e. heart conditions, anxiety, COPD. Just because they are invisible doesn’t mean they don’t exist. For those spectrum individuals who cannot adapt, we need to find a way for them to integrate.
Katelyn: I’d like to see more services for adults. My ADD diagnosis gets me more class services than my Asperger’s diagnosis does at my college last time I checked.
Helping kids learn unspoken social rules at an early age would be nice too. Most of what I’ve learned has been through my own research or experience. Personally, I probably needed someone as a kid to take me aside and teach me that there are people out there that would take advantage of my trusting nature. I had to learn that lesson the hard way because I can’t always read people and what their true intentions for me are.
Thank you very much for joining us today. If you’d like to learn more about autism or Asperger Syndrome, please check out the following resources:
National Autistic Society – UK based organization advocating for autistics everywhere
Autism Research Institute – US-based autism research organization
Invisible I – Youtube channel documenting Katy’s struggles with ASD
“Eye Contact” – a series of Youtube videos by user KHFMcAwesome talking about his experience with Asperger Syndrome
Asperger’s and Me – TV host Chris Packham’s account of his Asperger’s Syndrome (Part One—parts two and three are accessible in “recommended videos”)