Category Archives: Acceptance

Always Read the Label

When I learned that I have Asperger’s Syndrome, my first impulse was to read everything I could get my hands on.  I was excited to discover that my town’s library has a large collection of books about Asperger’s and autism.

I went to the library, armed with my list of call numbers, and was surprised to discover that only two of the books listed as available in the online catalog were actually on the shelf. Puzzled, I brought up the entries for Asperger’s on the library computer and realized that I’d glossed over one key detail: most of the books about Asperger’s and autism were shelved in the library’s Disability Resource Center.

Looking down at the two books in my hand, I noticed the bright orange DRC stickers on the spines. The books I’d found in the general collection had been shelved there by mistake.

Some of the autism books that I borrowed from a nearby town library had a more generic "Health Information Center" sticker on the spine.
Some of the autism books that I borrowed from a nearby town library had a more generic “Health Information Center” sticker on the spine.

And so I was confronted with the question I’d been avoiding: am I disabled?

Like many people who discover they’re aspies later in life, I already have a fairly strong self-concept built around a set of labels I’ve carried with me most of my adult life:

  • woman
  • wife
  • mother
  • entrepreneur

From the start I was surprisingly okay with adding aspie to that list. It’s a label that explains much of what makes me different from other adults. It’s so much easier to say I’m an aspie than to try to catalog the long list of ways in which my brain functions differently from a neurotypical brain. Even when the Asperger’s designation is retired in 2013, I think I’ll still identify as an aspie because that’s how I entered the spectrum.

Autistic was a harder label to accept. I’d always thought of autistic people as nonverbal and cut off from the world. I now realize that I’d bought into a dangerous stereotype.

As part of the online autism community, I’ve learned a lot over the last few months. I’ve learned that the autism spectrum is as diverse as the neurotypical spectrum. I’ve learned speaking is not the only means of communicating with the world around us. I’ve learned that the autism spectrum is not hierarchical; we can’t quantify the people on it using neatly bounded phrases or concepts. I’ve learned that autistic adults have a responsibility to stand up, speak up and continue speaking up.

So, yes, I’m autistic and proudly so.

But disabled? I actually Googled a definition to see what the word means in a pure etymological sense. So here it is, straight from Google’s dictionary:

A physical or mental condition that limits a person’s movements, senses, or activities.

Undeniably, yes, that applies to me. Asperger’s is a neurological (physical) condition that limits (or at least alters the function of) my senses and my activities to varying degrees.

Still, I struggle with the Disabled label. My resistance has nothing to do with the appropriateness of a dictionary definition and everything to do with my biases against the negative connotation of the label.

There is a strong and growing movement in the ASD community to emphasize the strengths that result from being on the spectrum. There are many and, personally, I wouldn’t trade my aspie strengths for the ability to make small talk or not bump into the furniture with alarming regularity.

Well, on most days I wouldn’t.

But here’s the funny thing about labels. Even though I don’t think of myself as disabled, I still have to go into the Disability Resource Center to pick up books about people like me.

Do other people see me as disabled?

Undoubtedly some do.

Maybe the real question is, does this bother me?

I guess it does, on some level. Would I be writing about it if I didn’t?

I’d like to say that thinking and writing about complex issues like this helps me untangle them but sometimes I end up more uncertain than when I began. Instead of coming to a conclusion, I’ve come to an occlusion. I literally have nowhere to go with the rest of this piece because each path I start down leads me deeper into the weeds until I encounter thoughts so thick and overgrown that I have to turn back.

So instead of putting a bow on this and calling it done–something I’m sure I would regret doing because my understanding of this topic is still so poorly formed–I’m going to challenge myself to continue reading and thinking and learning, to dig deeper. I’ll be back in early March with an update–not necessarily with answers, but certainly with more thoughts.

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some related posts by other bloggers about labels, how we identify and the significance of language:

I know there are many, many more smart thoughtful posts and articles about this topic. If there’s something you think I should add to this list, let me know. I’ll continue building it as I read and explore.

The Island of Misfit Toys

In honor of the annual airing of Rudolph the Rednosed Reindeer this coming Tuesday.

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When I was in elementary school, I was fascinated by the Island of Misfit Toys.

If you have no idea what I’m talking about, here’s an outtake from Rudolph the Rednosed Reindeer. Rudolph and his friends have just found themselves on the Island of Misfit Toys and the toys are describing their problems:

The Island of Misfit Toys is like aspie heaven–a place where no one measures up to conventional expectations and you’re not even allowed to stay if you might be the least bit “normal.” A place where it’s okay to be a bird that swims or a cowboy who rides an ostrich.

Because that’s the real issue with living in a neurotypical world, isn’t it? Conventional expectations. If 99% of people had aspie brains instead of neurotypical brains, then aspies would be the baseline. Imagine a world where making small talk was considered dysfunctional and hugging someone you’ve just met was frowned upon.

But we aspies live in a world filled with norms and expectations that we often don’t understand or that we find ridiculous. A world that isn’t going to conform to our standards. So the question becomes: move to the island of misfit toys or give up swimming and learn to fly like the other birds?

Much of the self-help information out there for adults on the spectrum is focused on learning to fly in formation. Learning to assimilate, to pass, to appear less autistic.

To a certain degree, assimilating is beneficial. If you’re the train with square wheels or the boat that sinks, learning basic life skills is necessary. We live in an NT world and refusing to acknowledge that fact is going to result in frustration and bitterness. A certain amount of assimilation makes life easier. Given all of the challenges aspies face, that doesn’t seem like a bad thing.

But what if you’re the cowboy riding the ostrich?

Well, does the ostrich make you happy? Can you ignore the strange looks and snide comments from some of the other cowboys? If you’re like me, you’ve probably developed a certain capacity for ignoring what other people think about you. Maybe you even like defying conventional expectations.

As adaptive strategies go, flying your freak flag sounds like a pretty good one to me.

Let’s Be Independent Together

Early on in Rudolph the Rednosed Reindeer, Rudolph and Hermey decide they’re going to fly their freak flags. They’ve had it with conventional expectations. Their efforts at assimilation have failed and they’re tired of being ridiculed for being different.


They come up with a solution that’s wonderfully Aspergerian: they decide to be “independent together.” It’s meant to be a silly play on words, but there’s a lot of wisdom in that phrase.

To be independent together is to accept our differences, to celebrate what makes us uniquely autistic, each in our own way.

To be independent together is to walk our paths, side-by-side, but not in lockstep.

To be independent together is something we can each do, right now, today.

Just look around until you find one of those unconventional cowboys. When you do, give ’em a smile and say, “Hey, that’s a cool ostrich you’ve got there.”

It’s that simple.

To be independent together is something we can each do, right now, today.
To be independent together is something we can each do, right now, today.