“But you seem so normal!”

People who actually know me rarely seem surprised that I am autistic, but when I bring it up with those who don’t, I often get a different reaction.  “I never would have guessed!”  “Are you sure?”  “It’s normal to feel shy sometimes!”

They likely notice that I hardly ever make eye contact, and that I move awkwardly through the world, but they don’t immediately perceive me as disabled, perhaps just a little on the withdrawn side.  Generally, I respond with something brief like “Not all of the symptoms are obvious,” but I want to provide a better explanation of how I am able to appear “normal” in small doses.

Basically, it all comes down to practice.  When I was fifteen, I saw a video of myself and, comparing my speech and mannerisms to the other people in the video, I realized that I was way off target.  I was speaking more loudly, more nasally and with less inflection than the other people, and laughing loudly and nervously without reason.  (I’d been told that I spoke too loudly before, especially by my then-boyfriend, who, when I got excited about philosophy and started practically shouting in a restaurant, grabbed my arm and growled “Don’t ever do that again.”)  I was unfamiliar with autism at the time, but I did know I’d always been socially inept, and I resolved to change the way I acted.

It was very difficult at first, and made being around others even more stressful than usual.  Over the years, though, I like to think I’ve gotten pretty good at it, with the exception of the eye contact thing and (I’ve been told) “seeming distant.”  In some ways it relieves stress, because it makes something challenging closer to automatic.  It’s also still stressful overall, however, compared to just not trying.  I put on a good mask, but it’s heavy to wear, and if I have to do it for more than a couple of hours I’m likely to melt down and flee (one reason why I can’t work a regular job.)  I have to have a significant amount of time each day when I can just be myself, and whether I consider someone a true friend is based on whether I can do that when they’re around.  Not too many of those have ever come my way, but I’m awfully happy about the ones who have.

I think of my strategy as Reconnaissance, Rehearse, Recall, Replay. Reconaissance involves peoplewatching at every opportunity and taking note of specific behaviors, especially if it’s recognizable as effective (for example, the person receives a smile or gets what they want.) Rehearsing involves practice emulating what you’ve seen and heard.  When no one is around, you can record yourself and play it back, and/or stand in front of a mirror and practice, and you can go over your plan of action in your head as many times as you want.  In Recall, which was the most difficult step for me, I had to train my memory to accurately store and quickly retrieve the information I’d gained.  It wouldn’t do to have the exact right thing planned out to say and then have to fumble for the words in the moment.  Again, practice, practice.  Finally, Replay is going over what happened in your mind later on.  I was far from perfect at first and made a lot of big mistakes.  It’s important to evaluate what you’ve done and, without beating yourself up over it (easier said than done,) figure out what you can do better next time based on clues to people’s reactions.

In one representative instance, not long after I started the four R’s, I was out with my brother at a shoe store, and when the clerk asked how he was doing, he responded, “I’m wonderful, how about yourself?”  This instigated a large grin and a “Good, thank you!”  Ding ding ding.  I altered the phrasing to sound less smarmy, practiced it out loud and in my head to get the intonation right, made it a habit, and ever since then my default response to “How are you?” (unless it’s a close friend and they really want to know) is “I’m good, how are you?”  And I was delighted to discover that I got smiles and thank-yous, as well.  So now I have a solid plan for how to deal with one throwaway social interaction, usually at grocery store checkouts.  And the panic over having to invent a decent response on the spot is gone.

I’m not saying I think autistic people should try to change or hide who they are.  I have found it useful to work on scripting my casual interactions to appear more neurotypical.  I am very open to answering questions about autism and my mental health conditions with anyone who is interested; I’m not trying to pretend I’m not different.  But in cases where the genuineness of an exchange isn’t really important and there’s little educational potential, I find it’s just simpler and less awkward to not raise the issue.  (And after all, the situation itself is already fairly scripted, it’s just that most people don’t have to think about it as hard as we do.)

I celebrate neurodiversity and totally respect the choice of some autists not to disguise their distinctive affect (and efforts like the Loud Hands project.)  For those who do wish to change how they interact, though, I think it’s helpful to learn from the experiences of others; I know I wish I’d had a guide.  So I hope that this post will be useful for education of both spectrum and non-spectrum readers.  Let me know in the comments what you think about the issue, and any tips you may have!

We are accomplished

Shame is one of the most crippling aspects of any non-visible disability.

There is a constant struggle to figure out how society’s expectations can be molded to fit within individual limitations– or, more usually, vice versa.  Often, we expect being disabled to translate into simply working harder, so that we can have a “normal” life.  When we do this, pushing ourselves to succeed in school, work and other sanctioned accomplishments, we’re often lauded as “brave” for “overcoming” something.

So when we’re not able to make up in determination what we lack in functionality, the default message is that we are less brave, less heroic, less worthy of acknowledgment.  We’re either a source of disgust– benefit scroungers, mooching of the state or dragging our families down– or we are simply ignored.

This bifurcated judgment is in many ways the worst slight that can be perpetuated against people with disabilities.  We are basically being encouraged to aspire to “normalcy” no matter the cost, cultivating an ethic of overwork and obsession that would be recognized as unhealthy in more able individuals.  While they are being encouraged to seek a work-life balance and reflect on what they love to do, we are being implicitly told the opposite: that the only way we can contribute to society and be worthy of admiration is by throwing ourselves forcefully at any obstacles to our path of integration.

The downside is that rather than crushing those obstacles, we’re just as likely to bash our heads in.  Those are the stories you won’t hear.

We have goals, like anyone.  We grow up, in the last couple of decades, being told like our peers that we can do anything if we try hard enough, and we want it to be true.  There are disabled people who are hard workers, diligent, talented; who aspire to leadership, power, knowledge, and all the other virtues considered worthy by our culture.  And yet this guarantees nothing.  Insurmountability is very real and very scary, and as bad as it is to think about it– as paralyzing as it can be– it’s just as life-shattering to suddenly realize that your faith in persistence and discipline has left you short of the mark.  All the more so when you’ve never been told that this can happen to you, or that there is any other explanation than personal failure.

There is a lot we can teach each other, and so much support we can offer, when we simply take the time to be authentic and truthful, perhaps brutally so, about our difficulties.  The benefits of non-pharmaceutical therapy are lauded in most circles, yet rarely is it acknowledged that changing your lifestyle can mean much more than doing yoga, walking, meditating, eating kale and quitting smoking.  Many of these treatments are geared at reducing stress, yet for a person with disabilities, they may well never be enough.  Sometimes, life itself– as defined by ableist culture– simply offers more stress than your mind and body can tolerate, regardless of what other measures you use to combat it.

This might be because a chronic physical illness leaves you feeling exhausted and ill, and in no condition to cope with high-pressure situations, which often make the problem worse.  Or it may be because activities most people don’t even think about can be overwhelming due to mental illnesses.  The fatigue and lack of focus that comes with depression and the sensory and social issues inherent in autism are two excellent examples of the latter.  And again, placing oneself in stressful situations– as defined by the stress tolerance of the individual– with the expectation of attenuating or adjusting to them often creates a feedback loop in which stress exacerbates symptoms, causing mood swings, meltdowns, and hospitalization, which in turn cause more obstruction and stress.

We need to be unafraid to tell each other this.  “I can’t work” is not a dirty phrase.  It’s often a true one, and one that needs to be uttered; to be admitted, first of all to oneself.  Or whatever limitations are true for any given person.  “I can’t handle a large group of friends.”  “I can’t work overtime to secure a promotion.”  “I can’t keep up the grades for an honors degree.”  None of these should feel more shameful than admitting that you can’t work the assembly line because your arm is broken.  We should not be reluctant to refuse expectations that are not only unrealistic but harmful to our health.  In doing so, we could be setting ourselves back years, decades, on the path to the lifestyle that keeps us well and lets us be our best.

After more than ten years of scrambling to attain a bachelor’s degree, I am finally being forced to admit that I may not be capable of pursuing my long and resilient ambition to being highly educated and work in academia.  And I am deeply ashamed of the sense of release I feel at that admission, because two words run themselves on a ticker through my brain:  Giving up.  Giving up.  Giving up.  Society hates few things worse than a quitter, and that’s officially what I am becoming.

Yet if I wasn’t pushed into that shame, if I hadn’t forced myself down the same rocky path for so long, I might very well be healthier and happier than I am.  By dedicating the bulk of my energy to a suitably “brave” and “determined” goal, I deprived the rest of my life of much-needed care.  Without single-minded aspiration, I could never have gotten as far as I have.  But along the way, how much did I lose?  How many panic attacks and bouts of substance abuse did I push myself into with impending deadlines and ridiculous self-expectations?  How many six-month pitch black depressions did I trigger?  How much work on my parenting ability, my self-care, my home life did I brush off and throw away because I had “braver” things to worry about?

I’ve noticed a pattern lately.  Every day that I spend mindfully bonding with my son, cooking beautiful meals with him, doing crafts, talking about science and history and Scooby Doo, I feel like a little bit of some giant, gaping wound inside me heals up.  I feel stronger: less depressed, less anxious, less on edge; more confident, more ethical, more whole.  When my son’s not around, getting up early, exercising, washing the dishes, and sending a long email feels like a good morning.  Deep down, underneath the angst and shame this supposed time-wasting causes, I feel like a good person, and I feel genuine happiness, a feeling which until recently I’d kind of forgotten.  And I know that if, in the back of my mind, worries about achieving something more are present, I feel like nothing.  I am less successful at the things that keep me well, and still unsuccessful at the ones that were just never designed for someone like me.

So surely, to pursue something of questionable attainability at the cost of my health, my happiness, and my contribution to my family, is not nearly so much brave as foolish and irresponsible.

By this, I mean no disrespect to motivated people with disabilities who doggedly pursue whatever ambitions they possess.  They have a right to that lifestyle choice and I respect their perspective and achievements.  And some people are able to manage their disabilities in such a way that their balanced lifestyle can include paid work or full-time study; I bear them only good will.  All I want is to know that, likewise, my choice to drastically simplify my life and focus on the day-to-day is one that is respected and valued by others, disabled and not.  I want to be able to say to someone, “Today I took my son to practice soccer at the park, made dinner for the family, and wrote a blog post before going to bed,” with the same satisfaction with which I’d say my semester went well or I got a raise.

All in all, we should not ascribe traits like bravery based on the limited slice we see of others’ lives.  To deviate from the norm and succeed within the bounds of what your body and mind need is just as brave as to work your ass off for conventional achievements.

When all you know is what you see, you have no idea what someone goes through to get where they are.  You see a clean-cut version of me conscientiously studying Old Norse on my bus ride home, and you think, “There’s smart girl, a good student.”  You don’t know that I am at that moment trying to ignore heart palpitations and an encroaching migraine, and that when I get home I will pass by the convenience store and buy a bottle of vodka, which I will finish just in time to get three hours of sleep before my exam the next morning.  Conversely, you see me curled up on the couch for a Star Trek break in the middle of the day, and maybe you think, “She’s getting lazy.  This is just escapism.”  You don’t know that I am taking an hour to do something that makes me smile because my hands had been shaking, and that after relaxing and feeling better, I got up and spent another hour making flying paper dragons with my kid, and later that night I will enjoy a cozy meal with my partner and go to bed content.  Do I not have a right to that?  Is it right– is it good for anyone– that I should be pushed to bash my head against barriers instead of finding the beauty in where I am and making it the best it can be?

I am not prone to bragging, but I will say this:  I am accomplished.  You just don’t know at what.