Please note: I am choosing to use “identity first language” in the following post and not “person first language.” Over the past several years, I’ve served, worked with, and listened to hundreds of Autistic self advocates and have come to this decision. For further reading, I’ll direct you to an illuminating article, “Identity-First Language,” by Lydia Brown shared on the Autistic Self Advocacy Network’s website. Lydia and ASAN are also both quite active on Twitter and other social media venues. Finally, I recommend spending time with Autistic and other disabled people as you make decisions regarding language and interactions.
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I recently served the participants and staff of the Joey Travolta Film Camp, Evolve coaching, and the Arts for Autism Foundation of Pittsburgh.
Several insights emerged.
- In two weeks, a camp full of Autistic people showed me more than I thought I knew with my master’s degree and seventeen years of professional experience. In fact, the contextualization of serving in a majority Autistic community rendered much of that background irrelevant at best and flat wrong at worst.
- It’s one thing to preach, a thing at which I’m long in the tooth and too often short of temper, but it’s an infinitely more meaningful thing to be reached and embraced by those about whom one preaches.
- The individuals, families, classrooms, and communities with whom I’ve served have proven time and time again that I am only as happy and healthy as those around me. That is, any relationship is interdependently multidirectional.
Today, I am as happy and healthy as ever.
And I believe we can all better boost each other, create and sustain happiness and healthiness.
Several important, intentional, challenging but necessary steps in that direction?
- Interact with each individual in front of you as if you’ve never met a person specifically like this before.
- Relinquish your baggage (i.e. preconceived notions, fear, anxiety, dogma) and be present.
- Listen, if you are physically able, with your ears and your eyes. (The point here is to genuinely attempt to understand the person/people in your presence.)
- Don’t treat another person as if they are broken, unnaturally different, or “less than.”
- Take a breath and truly practice what so many non-autistic people preach to their autistic counterparts: Have empathy; imagine how that person might feel as a result of your next statement, your posturing, your eye contact, your touch on the shoulder, and then do what you can to make that person comfortable. (i.e. practice what you preach, do as you say)
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I contend that you can no more accurately predict anything about one Autistic person after having met another Autistic person, or people, than you could predict anything about any person you meet from your experiences with any other person, or people.
Think about all of the terms we use to identify ourselves and congregate with other humans. Gender. Sex. Religion. Mother tongue. Race. Culture. Level of academic completion. Mental health contributions. Hair color. Hair style. Vocation. Athletic endeavors. The kind of dog we own. The brand of shampoo we use. The list could go on…perhaps not forever, but pretty damn close to forever.
How each of us expresses our WHOLE personhood makes each of us utterly unique, even though we share aligning bits with others.
Often, in processing and judging others, we will employ stereotypes based on what we know from other people we’ve met or seen who seem like new people.
The forest. The big picture. General trends. Any time you say, “Dogs..,” or “Pittsburghers…,” or “Evangelicals…,” etc., you’re making a statement based upon stereotypes. And any time you say, “Autistics…,” you’re doing the same thing.
But what about those trees? The individual people with whom we must interact on a daily basis?
How helpful are those stereotypes in knowing any single person? Turns out, sort of…but ultimately, not very.
And what’s the best bet for having a positive interaction with anyone? Just meet each person like you’ve never met a person like that before.
Because you haven’t.
Keep in mind, we don’t know the diverse underlying mechanisms of Autism any more than we know what causes the human sexuality spectrums. A lot of people will try to convince you differently. And as indicated in the linked article, just above, there are hypotheses. But the ultimate answer is, we don’t know. Autistic people would certainly have more to say regarding the framing of Autism from a medical and disorder perspective. Again, I encourage you to interact, either online or in person, with Autistic (and other disabled) self-advocates and organizations.
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Here is where I’d like to introduce the dimmer versus toggle switch analogy for human behavior and development.
Every aspect of human behavior exists on a dimmer switch. A spectrum. There’s a clear off (0%), and there’s a clear on (100%)…but the movement from one to the other is incremental and additive.
Think about an able infant/toddler learning to walk. We tend to remember “the day X started walking,” as if the toggle was OFF and then, in one magical moment, ON. But in reality, there is a movement from 0 through initial isolated movements without social intention, then coordinated movements and increasing sociality, toward managing all fours, crawling, scooting, cruising, bumbling about like a drunkard, and then even after those first few steps…there’s lots of failure before steady, consistent, independent, confident walking. Let’s call that last part 100. Not OFF, then ON. Rather, 0, then 1, then 2…and all the way up to 100.
But we only remember some point, likely in the vicinity of 75, where the first steps occurred…and we call that, “learning to walk.”
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And Autism?
Each Autistic person is a person…with family history and experience; with a personality and perhaps other behavioral, mental, and emotional health contributions that are not Autism; with individualized manners of processing the sensory world.
Each Autistic person also, obviously, has Autism…which is not a singular thing, but by definition includes multiple possible contributing factors and behaviors.
And all of these things…the person, the personality, the Autism; their experiences, reactions, emotions, and neurological functioning, interact with each other in ways very unique to the individual.
Yet…we tend to interact with each Autistic person, and certainly legislate and organize social and educational systems, as if they are broken, predictably and stereotypically so. We’re interacting with a construct of medically impaired Autistic people, while staring directly at a whole, complex human.
In two weeks at a camp for individuals with ASD I experienced what it means to support…a group of Autistic individuals.
Of course my experiences, my skills, my knowledge…all comprising my expertise, informed and guided me. The journey has been long and winding, and I haven’t reached any destination yet. It’s all process. All journey.
And yes, many Autistic people will appear and behave similarly to an extent.
However, there is no better technique in supporting, serving, and relating to Autistic individuals than being fully present, actively listening, observing the impact of our choices on others and modifying accordingly, and ultimately recognizing the whole person in each of us and in front of each of us. Not forcing standardization or compromised behavior to fit societal standards, particularly if in doing that we are communicating, “You are broken, you are less than, until you act like we’ve prescribed.” Which is more like abuse than support.
Let’s support, not abuse, each other.
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