By Rebecca Czekalski
Humanist Service Corps Volunteer
April is Autism Acceptance/Autism Awareness Month. As such, I felt it appropriate to write about my life as an autistic* woman who was diagnosed in adulthood and how getting that diagnosis has changed my life.
Accra, Ghana, August 2015
Me: Wow, this dish is spicy. So much pepper!
My colleagues: Spicy? This isn’t spicy.
Colleague 1: So Rebecca, is avocado spicy for you?
Me: Of course, it’s far too spicy for me to eat.
Bucheon, Korea, six weeks later
Me: So you would not believe it. My colleague doesn’t think avocados are spicy. They’re so spicy I can’t eat them.
My friend: Avocados aren’t spicy, they just have strong flavor. You know, you are weird. Like weird, even for a foreigner.
My friend: You know, between the weirdness and all the food aversions you have, I wonder if you are autistic, like my daughter.
Me: Autistic? Me? There’s no way, I can talk – a lot.
My friend: Many autistic people can be verbal. Females are often both verbal and on the autism spectrum. Why don’t I make you an appointment with my daughter’s specialist and you can get evaluated before you leave?
That is how I came to be sitting in the waiting room of an autism specialist in Seoul, South Korea, as a 31-year-old successful woman with careers in nursing and teaching. I went through about four hours of tests, which mainly seemed designed to frustrate me. I remember hitting myself in the head trying to get through one of the tests, until I realized how inappropriate that was to do in public. I remember almost breaking down in tears halfway through another. Finally, I was free to leave and go on about my business doing MDR-TB (multi-drug-resistant tuberculosis) work in rural Korea for a few weeks before departing to rejoin the Humanist Service Corps in northern Ghana. I would not get the results of my evaluation until three weeks later, sitting at the airport in Incheon. I had scores on most of the tests that put me squarely on the autism spectrum.
Looking back over the course of my life, a diagnosis of autism makes perfect sense. For those unfamiliar, autism is a neurodevelopmental disorder that can affect language and communication, sensory processing, and executive function. It is usually diagnosed in childhood, but as the definition of the autism spectrum has been expanded and redefined, many people have begun to be diagnosed in adulthood. This is especially true of females, as autism often presents differently in female children, while the majority of autism studies were done on male children. People with autism can have severe impairments or they can lead typical lives with or without certain supports.
My case was complicated by being raised as an Independent Fundamental Baptist (IFB) on the more cultic end of that religion. Being socialized as a girl in that extremely patriarchal social structure, many of my autistic traits were overlooked or assumed to be something else. My utter lack of eye contact was praised as being a properly demure teenage girl by my youth pastor when I was a young teenager. My quietness was interpreted as knowing my place as a woman whose opinions should be under a man’s. My overly formal speech was completely missed because of how immersed all of us children were in the King James Bible’s Elizabethan English. If you want to know how immersed we were, let’s just say we were Ruckmanites in a big way.
Food is a huge challenge because of the sensory issues that I have. I am very, very sensitive to any spice or strong taste. Even a hint of pepper can be too much for me. If I so much as wash a dish that had pepper on it, my hands burn for a few hours afterwards. I also have to be very careful about the texture of foods. That makes it very hard to eat fruits and vegetables, as they tend to have the most variable texture. Fortunately, I can eat many things in Ghana. Bofrot, a muffin-like delicacy, is a particular favorite. I am good with most meat and most baked goods, as well as some kinds of pasta. Growing up IFB, rebellion on the part of children was not allowed. Children were never to refuse to obey their parents for any reason, and a child was always to eat what was set before them. My refusal or inability to eat certain foods was a big issue. When I was two, I absolutely refused to eat something my mother made, and would not back down no matter how I was punished. This went on for several weeks, with my mother finally reaching out to a pastor because she was afraid I would lose weight if I continued being so picky about my eating. The pastor advised her to make me eat what was put in front of me, but to allow me to refuse if something was too spicy. Being the smart little one that I was, I quickly made spicy my go-to word for “this is too overwhelming to eat.” Therefore, avocados are spicy, within my vocabulary.
Some things are a huge challenge, some things are easy, and some things are just weird. As is typical of females on the autism spectrum, I was hyperlexic as a young child. There is actually audiocassette tape – yes, I’m dating myself here – of me at nine months old, quoting Bible verses. I taught myself to read before the age of three, and have been a voracious reader my entire life. I read quickly and I read well, but I cannot read out loud. Fortunately, being home-schooled for much of my education, I didn’t have to rely on that skill too often. I have always read books far above age appropriateness. I started reading young adult fiction in the second grade, by myself. I remember reading Lloyd Alexander’s The Beggar Queen at that age, and having to look up a lot of the words, but being able to follow the story. I had read every single Lloyd Alexander book in our public library before I started fourth grade. By the end of sixth grade, I was reading books for adults and encyclopedias just for fun. I read fast, and I read everything. The public library was an oasis of paradise for me. Only one of my sisters ever realized that this was not normal, making the offhand comment that I always used really big words. Again, being a homeschooled Ruckmanite, this never even got noticed by the adults around me.
I am verbal most of the time, but truly expressing myself is a huge struggle. I get the wrong words, misunderstand words, and frequently struggle with echolalia and nonfunctional speech. I have a lot of scripted conversations ready to go, and if someone trips the trigger on a scripted conversation, I have a very difficult time overriding the script. For example, if you ask me, “How are you?” my response will almost always be, “Fine, thank you, and you?” even if I had just asked how you were. In greetings, this is not that big a deal, but in other situations, it can be a problem. If you say, “You want this, don’t you?” or “Tell me the truth, did ___________ happen?” I will always agree with you verbally, even if my brain does not agree. I once wound up with three spicy cheeseburgers that I really didn’t want because the waitress tripped my script. I had always thought of it as nothing more than a weird annoyance, but it is actually quite common in verbal people with autism. Relatedly, my ability to understand spoken words cuts out from time to time, especially when I’m tired. Everything sounds garbled for a few seconds, and I am constantly asking people to repeat things.
While I struggle verbally, writing is a breeze for me. I can always get my thoughts out better on the page. I prefer to text or email rather than make calls. I am much better at maintaining friendships online, as I have limited ability to read body language and tone in others, and have little control over my own verbal tone and facial expressions. Things make more sense to me if I read about them or see them done, and I am much better at explaining things in writing. I learned in college that I could write 10-page research papers in less than four hours and still get very high marks. One of my professors once remarked that I was writing PhD level papers while getting my associate degree, but I can’t lay out my thoughts well enough verbally to win a friendly argument on the most benign of topics.
Abstract thinking is a constant challenge. I understand things in theory, but translating from theory to practice is a huge challenge for me. I actually had to take remedial critical thinking classes in college, and constantly was told that I lacked common sense. I don’t have the sense God gave a goose, as my mother always said. I can give you all kinds of theory about sexism, but I can’t necessarily recognize a sexist remark if I hear one. I can quote you nursing theorem upon nursing theorem, but it took me more than a year into my nursing practice before I was able to get the theories to influence my nursing skills.
Some of my biggest struggles and deficits come in the form of sensory issues. My brain does not have the executive function abilities to “tune out” repetitive stimuli. When I’m near a clock, the ticking sound never gets ignored, and I hear every tick, tick, tick the clock makes. I have had to get clocks that don’t tick or avoid ticking clocks at all costs. I can’t be around digital clocks because I get mesmerized by the numbers. I am constantly seeking patterns in the numbers, doing division, multiplication, addition, and even basic algebra to get a pattern in the numbers. Basically, if I’m in front of a digital clock, nothing is getting done besides number play. Cell phone clocks have been one of the most amazing adaptive devices for me, because they are silent, and they are usually not in constant plain view, tempting me to play with their numbers. Also, the shape of the numbers makes a difference in how much I want to play.
When I am over-stimulated, I get extremely nauseated. When I was very young, the overstimulation of a tight-necked shirt was enough to make me vomit. Even just putting a shirt on backside-front was enough to make me gag and run for the bathroom. It was so bad, we had a poem for putting shirts on me – “Which is the front, and which is the back, and which is the one that makes us go blapp?” Even today, I get extremely nauseated if I wear clothes that are too tight at the neck or that are too stimulating in some way. Even emotional stress or too much noise or light can make me ill. Physical reactions such as nausea and gastrointestinal distress are very common in children with autism. My reactions were so bad that I developed stomach ulcers by the age of 11.
The most comical of all my symptoms is face blindness. I am not completely face blind, but I am face blind enough that it causes some issues. I first realized this when I was 15 years old, working as a cashier in a local convenience store. I could only recognize people if there was something very distinctive about them. However, if they started talking to me, I suddenly realized who they were. I assumed that I was just bad with faces, not realizing that I was worse with faces than everyone else. This has probably been the biggest issue for me living in Ghana. Ghana is a relationship culture, and people are constantly stopping me and the other volunteers on the street and asking, “Do you know my face?”. They are offended if you cannot figure out who they are quickly. This has lead to many embarrassing moments as I try to play for time and get them talking so I can figure out who they are by their voice and body language. I have relayed messages to the wrong person, went to the wrong person’s house, and even was startled by a strange man in my kitchen – who was the young man who has been coming to hang out at our house for more than six months. This face blindness also extends to animals, as we found out when I assumed that Kubalore, a fellow volunteer’s dog, had followed us to a restaurant in town, only to be told – when everyone stopped laughing – that I had tried to pet the owner’s geriatric dog who happened to be the same color as Kubalore. I have also fed the neighbor’s dog on two different occasions because I thought it was Kubalore. Once, I spent about five minutes calling my puppy, then fussing at it because it didn’t come to me, only to have Bo trot around the corner of the house just as I went to walk towards the neighbor’s dog, whom I had mistaken for Bo. It is annoying but it is also very, very amusing at times.
I always knew I was “a little off” as we would say. Being diagnosed with autism finally gave me a word to describe why I wasn’t quite like other people. It gave me a new way of seeing myself. It helped me to understand why I acted in certain ways and did things that didn’t make external sense. As I learned what self-stimulating behaviors were (commonly called stims), I began to realize that I could use this to regulate my emotions and over-stimulation situations. I used to smack myself when I was frustrated, and was always angry that I had so little self-control. Now that I know this is a stim, I have been able to switch to a more socially appropriate stim and to use it earlier, leading to much less frustration.
I began to realize that having food that is not overwhelming to me is an access need and to treat is as such. I no longer force myself to eat what I struggle with and I no longer force myself to stay in situations that are too loud, too bright, or have too many people. I am slowly learning to pay attention to the areas where I struggle, and to either remove myself from the situation or find a way to make things more comfortable for me, instead of trying to be accommodating and making myself sick or shutting down. I am excited to take this new knowledge of myself back to the US and my nursing practice and see the differences this can make.
*Identity-first language (i.e. autistic person) is overwhelmingly preferred among the adult autistic and neurodiversity activist communities. It is also the way that I personally identify, as I would not be me without being autistic, and so do not want to distance myself from the term. Person-first language (person with autism) is preferred among those whose children are on the spectrum. While this is not the way that I identify, I have used identity-first language when referring to myself, and person-first language when talking about others so as not to offend. If you have a strong preference for one or the other, please feel free to substitute your preference as you read through.