One of the reasons that I don’t appear autistic to many people is because, on the surface, my social skills are fairly good. I can make eye contact, most of the time. I’m good with small talk. I can react appropriately in most situations, and I can often decipher what emotion someone is feeling by studying their face. Despite my multiple disabilities, including pervasive developmental disorder not otherwise specified, a non-verbal learning disability, Asperger’s syndrome, severe sensory processing disorder, and an alphabet’s worth of mental health diagnoses, I can, in the right circumstances (and having had enough caffeine and rest) appear to have “overcome” many of my challenges.
When people ask me how I learned my social skills, I give two answers. The first answer is that I had speech and other social skills therapy on and off from the time I was a toddler until my early twenties, often focusing on things like eye contact and making small talk.
The second answer isn’t a thing: it’s a person. A person I’ll call Missy. Missy, who never spoke a single word to me, also taught me more about non-verbal communication and other social skills than any other person I’ve ever met, any book I’ve ever read, any therapy I’ve ever attended.
Let me explain.
Caring for Missy
When I was in my early twenties, I took a job as a personal care aide to Missy, who was nine at the time. She has significant physical brain abnormalities that cause her to be severely developmentally disabled. She does not walk, talk, or get her nutrition by mouth. She cannot sit up on her own, nor roll over, nor perform any tasks of daily living by herself. She also suffers—and I do not use the word suffer lightly—from frequent seizures.
I was hired to help bathe, feed (via a gastrostomy tube), dress, and otherwise take care of her. For one or two afternoons a week, for five years, I would meet Missy’s school bus, take her inside, take care of her, and generally hang out.
When I first started, her mother would remark on seemingly random days that Missy seemed to be gearing up for a seizure. I didn’t know what she meant. Over time, however, I too learned to read Missy well enough to say if it would be a good or bad day. I learned to add up all the tiny nonverbal cues that meant Missy might be having an aura, a certain feeling people get before seizures.
It is, to put it mildly, rather hard to detect an absence seizure, where one loses consciousness briefly but does not lose muscle tone or jerk around, in a person who does not talk. They are hard enough to detect in people who do talk, for goodness sake! So I learned to watch Missy’s eyes, her bright, bright blue eyes which are so beautiful you could get lost in them for days.
When she had a seizure, her black pupils would go big-little, big-little, big-little, in and out, faster than she would blink. I learned to look at her eyes, often, to see if she was “there” or not. Due to her sheer remarkableness, Missy also has the ability to sleep with her eyes open when she is very exhausted. I often found myself playing a game which neither of us really liked. Is she seizing? Is she asleep? Or is she choosing to ignore me? (Okay, I actually do think she liked that last option, as she loves to get a rise out of people!)
Missy had and has every type of seizure on the planet, from the big, tonic-clonic, jerking-around, stopping-breathing type, to the quick, creepy laughing type, to the brief, blink-and-you’ll-miss-it absence type. As well as a few types she has made up all on her own. If a tonic-clonic goes over a certain number of minutes, there are specific procedures to follow, as when she goes cyanotic (loses oxygen or stops breathing) or starts choking on her own secretions. In 95% of the seizures I saw, however, you could only hold her hand, tell her you loved her, sing songs, and wish and pray for her to come back. (You know what makes an atheist pray, by the way? Someone you love turning as blue as her eyes.)
Learning from Each Other
I had been taught eye contact by a professional, taught to count to three as I did it, but Missy’s big blue orbs let me stare into them without judgment for long periods, without worrying if I was doing it wrong. When I was a kid, eye contact for me was physically painful, like for many autistics. I hated doing it and avoided it when I could, but with Missy, I had to, and I found it wasn’t painful at all. I practiced on her, and I was rewarded by her making eye contact with me. I found that we could have entire conversations with our eyes alone. It was remarkable.
I was also able to extend this skill to the wider world. If I’m ever in a social situation and I’m making eye contact because I want to, not just to be polite—that is a direct result of what I learned from her.
Missy has not been able to use a traditional augmentative communication device, and the only way she could make her thoughts known was through her body language and nonverbal communication. Because I was invested in her well-being and I wanted to know what went on inside her head, I started analyzing her head movements, her gestures, her facial expressions. Missy, despite or perhaps in spite of her disabilities, has one heck of a personality and has no problem communicating her likes and dislikes. She was never taught self-advocacy or exposed to the disability rights movement, yet she knows in her own way that she is a person and speaks out as best she can.
Case in point: she hates showers. Just hates them. Unfortunately, as I explained to her many, many times, showers are not really optional for people in our place and time. Missy knew, however, that if she had a big seizure, she would often get to skip her shower and the hated hair-dryer afterward. So, she started faking seizures—she’d throw her arms out, not react to your voice, and you’d turn off the hair dryer and fuss and try to figure it out, but—nope. Pupils were reactive. She was just fooling, or, as I like to think of it, self-advocating to avoid a situation she didn’t like and enable a better outcome for herself. (To this day, I don’t know how she knows how to fake a seizure when she is, presumably, quite unconscious during real ones and doesn’t remember them.)
Missy doesn’t respond in English when you speak to her. She does make noises, though, and so I would practice small talk with her, comment about the weather, gossip, and tell her my secrets. She is a wonderful confidant. Missy would look at me and say “eeehoh” and I’d agree. We’d read books, she providing a running commentary, and sing songs—for a number of years, “The Itsy Bitsy Spider” was her favorite.
Because Missy has difficulty seeing, I learned to make my facial expressions bigger and more emphatic. Because Missy reacted better to certain tones of voices than others, I learned to modulate my voice more, to pitch it high and low. Unlike at speech therapy, I could never get it wrong around Missy. If I was rude to her by accident, she never minded. She never told me, “Watch your tone,” or “Why do you look so sad?” when I was just thinking. Yet, her reactions and responses when I communicated with her in the “right’” way pushed me to become better at it.
She was, and is, the perfect teacher.
Unfortunately, as Missy grew bigger, I found that my back was unable to move her safely any more, and the time was right to move on. I am lucky enough to keep in touch with her and her family. Despite her difficulties, she still has a great smile, and she still makes great eye contact. And because of her—because of her, I look straight back.