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Sitting in an IKEA Cafe, a quick movement catches my eye. I see a girl, probably in her teens or twenties, running in a way that is distinctive. It's familiar to me, because it's one I've seen in myself - her hands are drawn up against her chest, and flap in time with her steps. I see her run, turn back toward a woman who is obviously her mother, then turn back to run again. It's not clear to where. She says nothing.
Suddenly, she throws up on the floor - although she seems, at least to me, to be trying to control it. Then she continues her run. I realize she's heading toward the bathroom. Her mother joins her, and they disappear. Sitting here, I realize what I've just seen, but it's clear the people at the tables around me, don't.
They're making faces, shaking heads. Making subtle, judgmental comments. They judge them both for leaving...yet I recognize exactly what that was about. This mother had a seemingly non-verbal, sick autistic daughter, who was probably on the edge of a meltdown. What could she do?
Does she leave her child, knowing that her daughter is in a state where she can't fend for herself, in order to clean up and placate others? Or does she do what she did, talk to a worker, apologize, and leave to take care of her child?
Now I'm faced with a social dilemma. What do I say? If they are talking amongst themselves, is it appropriate of me to interject? Especially when I have only speculation to go on? If the mother did not choose to publicly identify her child as autistic, do I have the right to do that on her behalf?
I posed these questions on Twitter, and the response was wide-ranging, and immediate. Opinions were wide-ranging. Some said, yes, absolutely say something - that the mother would have if she had had the time. Some said, no, it was her right to keep such things to herself. Still others said that clearly these people do not understand, and are unlikely to. Intervening, they felt, would be at best useless, at worst actively harmful.
All of this tells me pretty clearly the complexities that exist even within the autism community. There's no one party line as to how to handle issues like this. The judgers leave while I'm still fielding Twitter responses, their criticisms having died down soon after the evidence of the event had been taken care of by store employees.
In the end, I did not say anything - my respect for the girl's privacy trumping my urge to burst out something like, "Can't you just give this girl a break? Did it ever occur to you that she might be autistic?" I also recognize that saying this would have limited value, if they don't know what "autistic" means.
With the type of attention span I was likely to get in the midst of a bustling shopping day, what would their take away be? There were so many nuances to this situation that I could possibly describe in a few minutes.
Then, of course, is the issue of my own disabilities. I find it awkward to talk to friendly people I know. Do I have the delicacy to approach potentially hostile strangers and get across the message that needs to get across?
I remain disturbed about this long after. Did I make the right decision? I find myself feeling I should have done something more.
Later in the evening, I discuss the incident with my husband. He tells me he thinks I did the right thing - that it is likely that my message would have fallen on deaf ears. That at best, I would have been ignored, and at worst I would be judged, too. Then he asks the question that had been on my mind all evening.
How DO you drive awareness? All too often, it's the people who need awareness the most who are open to it the least. How do you open closed minds?
Is there any way to get them to see what I see?
The restless hands, that while not flapping, are interlaced in an awkward, almost wringing motion - a classic stim? Or the sweater, clumsily donned, which hangs slightly off-kilter - a subtle sign of motor control issues? The wide eyes, which slide past onlookers, not with rudeness, but overwhelm and fear?
How do you explain the source of that fear and stress? The cacophony of sounds and sights that seem to assault...the constant screams of children, the buffet of people brushing by, the struggle to orient yourself in space? The desperate desire to do what's right, and the paralyzing fear of not knowing what to do? The knowledge that you're ill - but you don't know how to communicate it, or what to do about it?
All too often, in my life, I've found that people struggle to understand such things...it's so different from their own experiences, it's hard to conceptualize. In a world in which so much emphasis is put on the lack of empathy in autistic people, it's interesting to note just how big the empathy gap can be going the other way.
If neurotypical people are so naturally good at reading the emotions of others, why was this girl's distress so evident to me, but not to them? Could it be because this girl and I shared a common language that they did not share? A language that is similar to the language that they share with other neurotypicals?
What does it take to get the world to recognize that language for what it is...communication? So much of the narrative of autism to the world at large is defined around the "absence" of communication - lack of "appropriate" gestures and facial expression, the characterization of being "in their own world." Yet, for me and this girl, it was our neighbors that seemed to be in their own world, blind to the pain and distress of another human being. Judging her because she doesn't express things the same way they do.
The reality, I've come to learn, is that we all interpret the world through our own filter. The challenge is to become aware of how that filter of experiences, teachings, beliefs, etc., affects how we interact with others. When we can not only recognize the biases we harbor, but also their impacts on those we interact with - we can work toward changing them.
But, in the end, the biggest barrier I see, is willingness. For all the education advocates can do, it can only take root in the mind of someone who's willing to change. How do we make people want to change?
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