A friend of mine who is both self-employed and a recently-diagnosed autistic person mentioned to me that they tell their clientele about their spectrum status upfront.
Awesome! I really, super-duper admire that. I also really, super-duper envy that 🙂
I would love to be able to disclose my spectrum status to my own clientele. That would feel the most comfortable, the most honest, the most ideal.
Where I live, it’s a potpourri of potential disaster for me, if I were to disclose my own Aspergian/autistic status to my own clientele. I don’t know what it’s like in other parts of the world, but I get the impression that most of the United States is much further behind than the rest of the world in terms of autism acceptance. I’ll explain…
I’m a licensed professional in the United States. I’m also Aspergian/autistic. The characteristics of my condition do indeed negatively impact my job, in terms of potential misunderstanding and misinterpretation (and the “bad blood” that can result from such situations), a strong apprehension to performing certain tasks that are integral to my job (such as meeting and conversing with people), and personal “quirks” such as lack of eye contact or self-expression that may put (neurotypical/allistic) people off because those people aren’t expecting me to act that way. They’re expecting me to be “like everyone else”, because on the surface, I don’t look any different (autism doesn’t have any distinguishing physical characteristics, after all), and I don’t appear to act any differently (at first) than anyone else. And thus, expectations are formed, flowing in the direction of from them, toward me.
I would absolutely love to “come out” as an Aspergian/autistic person to all of my clientele, first thing. But I’m not sure that that’s possible at this time, given where I live and the overall perceptions of–and attitudes toward–the autism spectrum and the people on it.
The US, to me, seems like a polarized hotbed of ignorance and assumptions. The average American is hurried and preoccupied, usually with their kids, their jobs, and their electronic devices. They force-feed themselves news headlines 24/7, shifting their eight-second attention span from one to the next, without giving much of anything a second thought. The information goes in one end of the neurological synapse, and out the other. Nothing sticks in their minds once they have scrolled past that headline…
…except for the emotional response. Emotions take a short-cut, past all cerebral checks and balances, and proceed directly to the center (and most powerful part) of the nervous system. There, they exert tremendous influence and powerful responses. The news media inherently know this, and they manipulate it to their advantage. Shocking, ratings-boosting headlines dominate the media landscape, insisting upon sticking memorably in peoples’ minds.
And unfortunately, autism is one of those memorable topics. The media won’t give it a rest. Between fictional and “documentary” movies, multiple unfortunate current events involving encounters between autistic people and law enforcement, news magazine articles, campaign promises, recent legislation, Autism $peaks commercials, we’re almost bathed in an oily film of autism spectrum sensationalism.
The problem is that how we, the people of the spectrum, are portrayed is extremely inaccurate. It often “looks” accurate to the average NT/allistic outsider who doesn’t otherwise know any better, since most of them don’t otherwise have much personal contact with people on the autism spectrum, or perhaps they do, but fail to understand the Aspie/autistic person in their lives.
And it seems like everyone knows an Aspergian/autistic person. (Or, thinks they do.)
“My neighbor’s/sister’s/friend’s/coworker’s/mechanic’s/etc kid ‘has’ Asperger’s/autism.”
Thus, implying that they already know everything they need to know about the condition. Because, of course, they “know” someone “with” the condition. And since they
“know” that “someone”, they also transfer their impression of that person onto the whole of the autism spectrum community.
But they don’t actually know that person, really. They have extremely limited (at best) information about Asperger’s/autism itself. They only see what the media portray, or what they absorb through the filter of the NT/allistic parent/teacher’s perspective. They’re not gaining much–if any–firsthand information.
Thus, as much as society at large wants to preach “awareness”, they couldn’t be further from achieving that.
That’s the “ignorance” part. People don’t know, don’t understand, and aren’t truly aware.
This is a significant problem in itself, ripe for catastrophe as it is. Now, let’s toss in a dangerous element: assumptions.
People make assumptions when they believe they know all they need to know about a certain topic. When people believe they already have enough information about a subject, their minds turn off. They stop seeking new information about that topic. They stop listening. They stop learning. An open mind is humble; a closed one feels “secure” (in what they (think they) know, and their grasp of that information).
The disaster is ripe for the striking when people base those assumptions on inaccurate information, or partial information. (The latter would be like taking a single case report that’s been published in scientific research journals and attempting to apply the findings/results to the entire population, without taking any individual circumstances into account. Anyone attempting to do this in the scientific community would be laughed at and ostracized–and yet, this behavior is permissible and even commonplace in society regarding just about any subject. And unfortunately, the autism spectrum, and the people on it, are no exception.)
Everyone is familiar with the “severe” stereotype: the knee-hugging and rocking back and forth, the covering of the ears and screaming, the “tantrums” in public, the “fixation” with a toy or electronic device, the “strange” speech/words/voice/gestures/movements, etc, etc, etc.
The public is far less familiar with the “mild” examples: the researchers, inventors, janitors, professors, doctors, waiters/waitresses/servers, inventory clerks, welders, teachers, etc, who also live on the Asperger’s/autism spectrum. The public might be “shocked” to hear that people on the spectrum do have jobs, partners, children, friends, and driver’s licenses, because the assumption that all autistic people are of the “severe” stereotype is semi-permanently etched in their minds.
Ignorance + Assumption (based on limited information) = Potential Disaster.
My own life would be easier by leaps and bounds if I could simply say…
“I ‘have’ Asperger’s/autism…”
“This is why I often stare down at the table when answering your question.”
“I might not understand your question at first.”
“I might seem awkward or shy.”
“This is why my assistant is the only one who touches a phone.”
“This is why I might respond the way I do.”
“This is why I go into such detail.”
“This is why I’m always armed with new information.”
“I might seem blunt.”
“My bedside manner might seem a little unusual.”
“This is why I say what I mean and mean what I say, and you can trust that at face value, and I need to be able to expect the same from you.”
“I might look like I don’t care, when actually, I really do.”
And then I would go on to say, “I’m every bit as educated, trained, and licensed as any other provider. This field is my ‘calling’; I’ve been called to serve. I’m fully committed to your success and I care about each one of my clientele as a unique and important individual.”
This would be beautiful. We could finally reach a common understanding, and I could be measured by the appropriate yardsticks and expectations. It would be such a relief, such a weight off my shoulders, such a reduction of my everyday stress.
Disclosure is a funny thing; it’s a one-time shot. Since people base their opinions on what they already (think they) know, I’m at the mercy of whomever provided that limited information for that person. If the only exposure the person has to autism is a “tantrum” in public and admonishment for staring by an “indignant” mother, then if I disclose my own condition, I’m likely screwed, with all/any hope of a relationship, respect, or common understanding permanently severed. On the other hand, if the empirical data the person has consists of a “quiet, smart” Aspie/autistic person, then that person may be able to form a favorable impression of me.
Lacking x-ray brain-scanning superpower capability 🙂 I have no idea beforehand what the person knows about–or has experienced of–Asperger’s/autism. To disclose my own status without having any clue how that person might respond is to go out on a limb that’s in mid-crack. I might successfully make it to the end of the limb unharmed…or the limb might crack all the way through and fall, sending me spiraling to the ground.
And if the response happens to be the latter, there’s no “undo” button I can push and take back my statement. I can’t un-say what I’ve said, and they can’t un-hear what they’ve heard.
I also can’t stop them from spreading the information to other people, nor do I have any influence whom they tell or how those people will react.
I have indeed (extremely cautiously) “come out” to three members of clientele. Each time, the situation and its details were very specific and unique, and the reason for my disclosure had overwhelmingly more to do with helping them (I strongly suspected they might be on the spectrum, too) than it did my own release/relief. (In fact, it caused me more stress at that moment than it relieved; the relief only came after, when I realized they weren’t getting up and disappearing for good.)
Maybe someday, I’ll be able to do that with all of the people I work with.
For now, what I can do is limited, but there are possibilities. I can write. Get my information out there. Correct inaccuracies or urban-mythical rumors as I come across them. Speak up and out. Keep blog-writing. Slip little informational tidbits into conversations with clientele without fully disclosing anything (for now). Post contemporary, neurodiversity-friendly links to articles, TED Talks, resources, books, etc to public forums. I can do my part to “seed” the internet and especially social media platforms with correct, accurate, and up-to-date information. I can have direct conversations with my friends and family and truly educate them, bit by bit, over time.
And I think that’s the most realistic strategy…one family member, friend, coworker, clientele member, etc at a time.
Even if those people have to be very carefully cherry-picked for the time-being, and the waters tested before plunging in. After taking the plunge, ripples are formed; that’s the magnitude of the impact. Then, as the impact is adjusted for, the ripples fan out and reach the far ends of the water surface. No water droplet has remained completely stationary and unaffected by the plunge. This phenomenon can be channeled in a very positive direction, with positive implications.
There just might be hope. 🙂
In the meantime, I’m elated and relieved for my friend that they’re able to do this.
Maybe someday soon, I will, too. 🙂