The importance of storytelling for Asperger’s / Autistic people

When I was growing up, I was quick to make snap judgments about people.  I don’t know if it was more instinctual or something I’d learned (probably from Dad) early on.  I do know that it was out of irritability in general.  I now know that the irritability was borne of anxiety and nervousness.  It’s not an excuse by any stretch, but it does explain things a little.

As I grew up, my mom was an excellent guide.  She would say things like “never assume” and “don’t judge”.  Throughout my childhood and adolescence, she would elaborate on the caution against judgment.  She said, “you never know what the other person might be going through.”

She gave examples.  The kid making my life hell at school might have a rough home life.  The boyfriend who caught me up in his emotional rollercoaster might thrive on chaos because he lacks the tools for a healthy relationship.  The teacher who snapped at the class might have a migraine.  The person walking slow through the grocery store or the mall might be in pain.  And so on.

Once I became an adult, I met my partner.  He is legally blind, but can see enough to function (his words; he’s not PC at all).  I learned not to assume he couldn’t see something; often, he could.  I learned to give him the credit he deserves.

A year into our relationship, I had to bring my elderly and ailing cat in so that she could cross the Rainbow Bridge.  I don’t remember the drive in or the drive back home, but I’m pretty sure I wasn’t the most astute driver on the road.

In fact, I was probably pretty “out of it”.  Although I’m normally a pretty fast and vigilant driver, I’m fairly certain that the posted speed limit didn’t mean much to me that day, and I’m pretty sure that if anyone got stuck behind me, they probably weren’t too happy with me.  They might have been late for work, or saddled with a headache, trying to get home ASAP.

I didn’t know.  Nor did I have any way of finding out.  Nor did I have any way to explain my unusually slow driving.  We had no way of reaching understanding.

Now, I try to go easy on the drivers that seem unintelligent, going slow for no visible reason.  They, too, just might have lost their cat.  They have no way of telling me.

These days, I operate under the pretense that each person does the best they can at any given moment.  If they’re not acting “up to my standards”, then chances are that there’s probably a good reason.

In short, I coined my own motto, a summary of my mom’s teachings and my own life experience: “Everyone has a Story.”

I’m learning that this is especially true in the Asperger’s/autistic community.  We all have our own story to tell. We need to be able to tell that story.  Many of us have come up against unfair judgment due to invisible impairments.

I’m not saying we owe the world an explanation.  But we need to have the right to the opportunity to explain, to describe, to share, to talk (even if it’s by writing instead of speech).

This right has come under fire.

A vocal minority of people in the Asperger’s/autistic community have unfairly asserted that unless we have obtained an official Asperger’s/autism diagnosis, that we should not speak (in any form) of our autistic experience.

That’s just plain wrong.  It’s also weird, irrational, and rude.

It doesn’t matter (nor should it) whether or not we have a magical diagnostic code next to our names.  We’re still Aspie/autistic.  We still live the experience every day.

And we need to talk about it.  We need to find not only our own voice, but also those of others.  Yes, professionally-diagnosed or not.

It’s also been said that telling our story doesn’t take the place of scientific research on Asperger’s/autism.  That’s true; however, the vast majority of the academic research field refuses to Ask Us.  They make their observations, note them, translate them into scientific jargon, and publish them, without any input from those of us who actually live the autism spectrum every day.  There’s a lot being learned about us, but so far this has been done largely without us; we are systematically denied a voice in the conversation.  To them, our viewpoint doesn’t exist.   Our story is missing from the equation.  The human element is lost.

I’m not saying that research isn’t important–it is.  But it must never be forgotten that Aspie/autistic people are real people, with real lives…and a real story.

Although I’ve referred to “our story” in the singular form, the autism story isn’t one collective story.  Each individual on the spectrum has his/her/their own.  From what I’ve seen, we all have something to say.

The story shouldn’t replace the quantifiable information gained in research.  But it does need to be included.  It needs to be considered.  It needs to be respected.

The human element, after all, is the ultimate reason for collecting all that data in the first place.  The story needs to guide that collection; if it does, the collection, the data, and the usefulness will improve.

Autism must speak.  And the rest of the world must listen.  For understanding and judgment are inversely related; as one goes up, the other goes down.  There’s no room for judgment in the human element; each individual does the best they can, and it’s fruitless and unfair to expect anything else.  But judgment will only dissipate as understanding builds.  That’s why we must have–and utilize–the right to tell the story.

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(Image Credit: Sylar113)

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11 Comments

  1. A diagnosis does not make a story. The story does not diminish without the label. The problem is, until you are diagnosed, no one takes it seriously. You are not who you say you are; you are pretending; you are trying to fit into what [name your disorder] criteria are. It is a disservice to the people who live with the disorder every day without the diagnosis; and if you ask me, it’s a disservice to the people who are diagnosed. Having a diagnosis doesn’t make you MORE [insert disorder here], it makes you one of many. We are not the Borg…we are ot all the same because of the same formal diagnosis. We are varied, and different, and a diagnosis doesn’t make it more or less real, it just makes it easier to get help if that’s what you need. No one’s story is more important or more valid than anyone else’s. We are as we are.

    Liked by 1 person

    1. Agreed, and I never want to do a disservice to anyone. The way I see it, everyone I’ve known thus far has had a story, one that began long ago, early in life, even long before diagnosis for some. Especially those who are diagnosed later in life, or those who (for any reason) can’t or have chosen not to be diagnosed. The story still stands, although to maintain the integrity/reliability of the data, it should be footnoted that their (our) status is suspected or supposed, so as not to compare apples and oranges (the unofficially vs the officially diagnosed). That’s just my perspective/opinion though 😊😊

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      1. “Agreed, and I never want to do a disservice to anyone.” You have not. I was speaking more generally, and about people outside. Those people who don’t have diagnoses, not because they chose not to get them, but because the genetic lottery picked them to not have anything to diagnose. And even with the diagnosis, even with the SAME diagnosis, it’s still comparing apples to oranges. Everyone is different, even if they meet the same criteria for a diagnosis. You’re doing a beautiful thing, openly discussing this with everyone. Thank you.

        Liked by 1 person

    1. Awww thank you for your lovely compliment! 😊. I gently urge you not to sell yourself short, though; your blog is absolutely cool!! ❤️

      When I follow or comment on a blog, I’ll show up as “This Field Was Intentionally Left Blank” lol 😉

      Liked by 1 person

  2. Autistics must speak, communicate their experience in whatever mode best suits them.
    Whilst I acknowledge that in this NT dominated world there is emphasis on quantitive at the expense of qualitative research but hang on a minute… who designs the research tools to assess autistics and whose interpretations of autistic behaviour are promoted?

    This is where it all goes ” pear shaped”! By definition a neurotypical interpretation of autistic behaviour has Buckley’s ( OZ term for NO/None) chance of being correct. Otherwise there would be no distinction between us … Autism wouldn’t exist.
    So in light of misunderstandings due to Neurological difference is it logical or fitting to impute mainstream interpretations of behaviours , intentions and emotional states onto Autistic individuals?

    Where does that leave much of the research and further more how relevant are ” interventions” devised from such research?

    Including autistic people in research is a plus but who are those formulating the questions, designs , tools and interpretations? What paradigm is accepted as correct and which culture does it reflect?

    Liked by 1 person

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