Who Am I?

Masking vs Speaking a Foreign Language

Posted: January 17th, 2017 | Author: | Filed under: Autism | 8 Comments »

Masking is a term that is often used within the adult autistic community. There is a clinical aspect to the term, as noted in the diagnostic criteria for autism spectrum disorder.

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

That description is actually pretty important since it captures something that was largely missing before. Although autism is fundamentally neurodevelopmental and thus present even as our brain is formed in utero,  it’s so intertwined that it’s not necessarily obvious to an observer. So the traits associated with autism may not become apparent until, for example, a child goes to school. Similarly, an autistic person is likely to learn strategies to mask autistic traits, especially in the absence of an intellectual disability. A diagnostician who isn’t familiar with ways that autistic traits can be masked might miss them leading to misdiagnosis or no diagnosis.

However, autistic adults don’t typically use masking in a clinical sense. Instead it’s most often a negative term describing a sense of being forced to pretend to be someone you aren’t: a typical or neurotypical person. Sometimes it can almost become a pejorative. And I understand some of that reaction. It can be incredibly draining to try to follow everything going on around you, categorize it properly, find the appropriate script or matching list of social rules, read and interpret tone, expressions, and body language while trying to make sure your own supports the information you are trying to convey. Whew! It’s exhausting just to type everything that goes into “masking” in any social situation, no matter how “simple”.

And it’s never a process that comes naturally for us. While our ability to mask tends to ebb and flow over the years, it seems to revolve around a fairly stable core capacity. At the heights of my energy and capacity, at least according to those close to me, I can present at least in the general vicinity of neurotypical. Other times, sometimes for years, I’ve barely been able to maintain even the most basic facade. But in either circumstance, it has always required effort on my part. In fact, it’s usually when my capacity is most diminished that it requires the most effort. I’m constantly analyzing things around me trying to interpret them and respond appropriately. So yes, I understand the yearning for an opportunity to just let the mask go, at least for a time.

However, that feeling is not unique to autistic people. Everyone wears masks to one degree or another in different settings. Everyone chooses what to hide and what to reveal in any given moment. I’m reminded of Billy Joel’s song, The Stranger.

Well, we all fall in love
But we disregard the danger
Though we share so many secrets
There are some we never tell
Why were you so surprised
That you never saw the stranger
Did you ever let your lover
See the stranger in yourself

Even in our most intimate relationships, we all still tend to adapt to the other and shape our presentation. It’s not even so much that we’re hiding. Often, we want to be understood by the other and put effort into communicating in ways we believe will convey our inner reality. Certainly, some situations like job interviews and work environments require that we conform to expectations, but most interpersonal relationships aren’t like that. As autistic people, I think we’re just much more conscious of doing it. Non-verbal communication and managing how much or how little to display or mask in any given context seems to come naturally and automatically for most neurotypical people, while we have to expend a lot more energy and effort to accomplish much less.

Of course, I do think most autistic people initially learn to mask in response to negative input from those around them. At least, that was certainly one of my initial motivations, even if I never completely thought it through in precisely those terms. We are more likely to be bullied at a young age because we stand out as different and unusual. We are often misunderstood even by those close to us. And so we can start to feel like we always have to hide our true nature or risk being hurt.

But even if that’s one of the forces that drives us to initially learn to mask at a young age, is that really the only thing we’re trying to accomplish? Are we just trying to hide and conform? I don’t think so. I’m not sure that was ever my primary driving force, even at a young age, and I know it hasn’t been the primary motivation for “masking” for most of my life. Instead, I’ve been trying to be understood, at least in my personal relationships. I haven’t been trying to hide my true self as much as I’ve been trying to communicate it in ways those around me can understand. It’s been hit or miss, since I didn’t really even understand myself. An actual diagnosis provides appropriate framing and helps me place things in context and understand myself better, but doesn’t change my underlying motivation.

Seen in that light, “dropping the mask” wouldn’t help me achieve my goals because neurotypical people would largely be at a loss. They generally lack the framework to understand my “natural” presentation. I’ve seen some people argue that the rest of the world should learn how to interact with us on our own terms, but that doesn’t strike me as realistic or practical. Since the scientific understanding of autism has grown and changed dramatically in recent decades and is still evolving, it’s difficult to estimate the percentage of the population (diagnosed and undiagnosed) that is autistic, but for discussion’s sake, let’s say it’s 1% of the population. With that sort of disparity in numbers, we might expect those closest to us to be willing to spend the time and effort to learn how to “read” us correctly, but it’s not something the general population is ever likely to do. So much of the burden lies on us, at least if being understood is our goal. I suppose that isn’t “fair” but it is reality.

Given that, I’m not sure “masking” really provides the best metaphor for what we’re usually trying to do. I’ve been thinking about this since my diagnosis as I’ve read and tried to learn what it means to be autistic. I think a better metaphor is learning a foreign language. We are after all, trying to communicate in ways that we did not naturally absorb as a young child, so it requires deliberate, conscious effort. Because we have to think about it, we’ll sometimes miss nuance, we won’t catch everything if native “speakers” go too fast, and we’ll always have a metaphorical accent. And some of us are better at the foreign language than others. Some of us might even be able to pass a native speakers for periods of time. But we’ll never actually be a native speaker.

In fact, I’m not even sure that learning a foreign language qualifies as a metaphor as much as a straightforward, factual description of what we are actually doing when we learn to “mask”. After all, studies in communication theory tell us that the majority of human communication is non-verbal. While some autistic people might excel at verbal language, none of us naturally acquire the non-verbal portion of social communication. On top of that, our behaviors that are clinically labeled stereotyped, repetitive, or restricted are confusing if not indecipherable to non-autistic (or allistic) people. We effectively “speak” a very different non-verbal language.

Since we’re scattered among the allistic population in every country, that means we’re always living as strangers in a strange land to some degree. And thus the greater weight of the burden to communicate will always fall on us. We can seek greater awareness among the larger population that we are not native “speakers” and champion greater acceptance for all of us, especially those of us who struggle the most learning this non-verbal foreign language. I think those are very worthy goals, especially since non-verbal language skills vary and some of us may always speak a form of pidgin neurotypical non-verbal at best. But I’m not willing to stop trying to learn to speak the language of those around me. I want to make myself understood, at least as much as possible. Is it a struggle at times? Sure. But I’m not inclined to give up now.

If anything, I hope that understanding myself better will help me improve my communication efforts. But I’m not really trying to mask or hide. I’m trying to speak their language, yes, but still speak it as myself.

I Have Autism

Posted: January 15th, 2017 | Author: | Filed under: Autism | 3 Comments »

My wife and I took our two younger children (20 and 24 years old) on vacation before Christmas. For the plane ride, the two kids sat on either side of their mother so they could both hold her hand during take-off and landing. She’s terrified of flying. I’ve never really minded flying itself; it’s navigating the airport that’s usually my biggest struggle. If anything, I rather enjoy the feeling of the acceleration forces. It’s probably the same reason I’ve always loved roller coasters. I do always want a window seat on the plane and find it somewhat more stressful when I don’t have one, so I took the window seat in the row behind them.

A mother with a young daughter took the two seats next to me. I was a little worried that the little girl might be one of the ones who gets scared or agitated and screams during the flight. That doesn’t especially bother me. I’ve been the person with a screaming child in public plenty of times in the past and there’s definitely not much a parent can do within the confines of a plane. (It’s not like you have the option to take your child outside until they calm down, after all!) But the girl was behind my wife and screaming children (and any other loud, high pitched noises) increase her anxiety.

The little girl turned out to be very self-possessed and a delight during the flight. She mostly paid attention to different things, but would sometimes point them out to me or, if she was holding it, show it to me. She would periodically tell me about something. Her mother apologized for her daughter bothering me, but I told her it was fine and, pointing out my younger two children in the seats in front of us, told her I was very used to it.

During take off, I could see the girl starting to get distressed, but her mother was ready with a soft toy which she clearly found soothing. When the changing pressure began to bother her, her mother pointed out things out the window that engaged her daughter. Later, they played alphabet games.

Part of the way through the flight, I noticed the girl would periodically tell herself something about the destination or some other piece of information while stroking an apparently soft, well-worn cloth bracelet on her wrist. The bracelet said, “I have autism”.

I had never seen a bracelet like that before. I would share a picture, but I couldn’t find a similar example online. The ones I could find looked harsh and uncomfortable or bright and gaudy by comparison. This one looked very comfortable, used soothing colors, but could be clearly read once noticed.

With that bit of information, I had an even greater appreciation for the way the child’s mother worked with the little girl. She had objects the child found soothing. She knew what things would interest and distract her. She played the games the little girl obviously enjoyed. She didn’t try to force compliance, but the end result was a very calm child. I’ve noticed a great many parents of neurotypical children don’t do as much.

I immediately understood the purpose of the bracelet, of course. If her daughter gets separated in a public place, she might have a hard time communicating information to an adult. She might melt down or go mute. Or simply struggle to figure out what she needs to say. I can remember getting “lost” in shopping malls and other public places plenty of times as a young child and how difficult that often was. In fact, now that I know I’m autistic, I wonder if autistic children have a greater tendency to get distracted or focused on something and get accidentally separated from their parents? It certainly happened to me pretty often, and I probably don’t remember all the times it actually happened. It’s something that all young children are prone to, of course, but perhaps we’re more prone to it?

There’s no great insight in this post. The brief chance encounter has just been on my mind. It does serve as a reminder that for all the “autism parents” who publicly bemoan their fate or even do horrible things to their children, there are many parents quietly loving and trying to truly help their autistic children in appropriate ways. I try to stay hopeful that most parents really do want to help their children.

And for all my struggles and the issues with which my parents struggled, I was fortunate that they worked to provide me the resources that actually helped me. They did so without any sort of diagnosis and without any real guidance other than instinct, observation, and trial and error. My family history is … complicated, and I spend more time writing about struggles I had growing up. That’s just the nature of the beast since some of those are things I’m still trying to work through or place in context now. But I have a great deal to be grateful for as well. Things could have easily been so much worse. In fact, as I study both the history and present day reality of autism, I’ve read many stories that are horrifyingly worse than anything I experienced.

I don’t think the girl’s mother was some sort of hero, either, or at least no more a hero than any parent struggling to do their best. I’ve a firm believer in what Sidney Poitier tells his father in “Guess Who’s Coming to Dinner?” and have tried to apply that with my own children. Our children don’t owe us anything. We owe them everything we can do to care for them from the moment they are born. They didn’t ask to be born. We brought them into this world. But I did appreciate that the mother had information about her daughter the parents of those of us who are my age lacked. And I saw how she was using that information to benefit and help her daughter in very specific ways. No parent is ever perfect,  but I found the two of them heart-warming during our brief encounter in an unusual and, I’m sure, stressful situation.

I try to notice and mark the small things in life. They often have more significance than we imagine.