Hello, Dear Spectrumites!
I want to take some time today to talk about something that’s been bothering me for quite some time…
The Great Schism of Autism.
Okay, so what exactly do I mean by this?
“Jon, are you getting political again?”
Well… Yes, and no.
Yes, in that the outcome of this Schism will most undoubtedly affect how the collective voices of the Autism community as a whole will be heard by our mainstream societies.
No, in that this issue goes a hell of a lot deeper than that.
“Uh-oh. Jon used a bad word. He’s getting serious…”
Yeah. I am. Because, really, the Great Schism of Autism is hurting us all, and it needs to stop. Like, years ago. It needed to stop years ago. It’s still happening, and probably will continue to happen long after this post, but it needs to stop. Have I made myself clear that this needs to stop? Because, if I haven’t, it needs to stop, and it’s hurting the Autism community by not stopping.
“Settle down, Jon.”
So, what exactly is the Great Schism of Autism, and how is it hurting the Autism community as a whole?
To understand the answer to this question, we first have to understand how the Autism Spectrum (Yes, it’s a Spectrum, folks! Let’s carry this lesson with us…) is currently thought of.
Most people, even us at times, tend to think of the Autism Spectrum as this:
A one-dimensional line segment. Point-A to Point B. Low-functioning to High-functioning.
Over time, this has perpetuated the idea that there’s nothing more to an individual diagnosed with Autism Spectrum Disorder (ASD) than where he or she is placed along this line segment. This is the root of the Great Schism of Autism.
Now, here’s what I mean by that term. the Low-functioning end of the line segment doesn’t accurately represent the folks at the other end of the line segment, and vice versa. People, families, and communities affected by ASD don’t even agree on what counts as “real Autism” half the time.
Prior to the release of the DSM-V (That’s the manual of statistics and diagnostic criteria psychologists widely use for diagnosing ASD, by the way…) in May 2013, many psychologists — and advocates, even — couldn’t agree on whether or not Asperger’s Syndrome should be included in the High-functioning end of the Autism Spectrum. Ultimately, Asperger’s Syndrome was lumped in under the Autism Spectrum Disorder umbrella in the DSM-V manual, but consider this:
What if it hadn’t been?
I wouldn’t have had my internship for the past 19 months without a diagnosis of ASD. I’d still be unemployed and living with my parents, right now, struggling to make a dent in my career.
To me, that’s a thought that’s going to keep me up at night, now that I’ve thought of it. And just when you think the DSM-V’s inclusion of Asperger’s Syndrome finally put the Schism to bed, we have our good ole’ pals, the Susan G. Komen of Autism, Autism Speaks to remind us that it’s so far from over…
Yeah, about that…
I guess you can figure out what’s going on there, but beside quite possibly killing my taste for the color, “blue,” forever, let’s break this all-too-ignored, but public spat down and reflect on how this has impacted the Great Schism of Autism.
Autism Speaks stands accused of misusing donations that are supposed to be going toward helping the Autism community by funneling them into grandiose marketing campaigns for a “cure” and massive overhead costs.
This is problematic for an organization that wants to be the “voice of Autism” for the sole reason that by working toward a cure, they are marginalizing the audience they want to be the voice of in their marketing campaigns.
The Autistic Self Advocacy Network (ASAN) has responded by fighting against a cure, claiming that a cure is an unnecessary extreme that would ultimately be tantamount to eugenics (At least, that’s how I would put it…)
ASAN’s stance is that with proper accommodations and people just not being jerks, in general, anything is possible for a Spectrumite.
This has created two camps:
The families of the Low-functioning Spectrumites (the Point-As), and the self advocates at the High-functioning end of the Autism Spectrum (the Point-Bs).
This is the root of what I mean by “the Great Schism of Autism.” The Point-As feel that all the resources are going more toward the Point-Bs’ end of the Autism Spectrum. They feel that Point-B doesn’t even count as “real Autism.”
Before you call me out on this, I’ve seen these arguments on the comment threads of Autism Awareness posts on Facebook time and time again over the past 10 years that I’ve even had a Facebook account. So many, I can’t even find the best five to put here to give you examples. Maybe, you have, too. Or maybe not.
The Point-Bs, in turn, feel like everything that’s offered to the Autism community is unavailable to them because they’ve already “fallen off the cliff,” having aged out of any governmental resources that would have been available to them by the time they reach the point where they could think about becoming self-sufficient.
“So, how do we even begin to fix this?”
I’m glad you asked.
I stumbled across this post several months ago, and I believe Tumblr may actually hold the key to starting to turn this around:
Tumblr user, theoraah, theorizes that, rather than a line-segment, the Autism Spectrum is more akin to a two-dimensional color wheel that charts our prevalence of certain symptoms of ASD.
It’s a great theory, but I think it could go further than it does in its current form.
We are three-dimensional beings; shouldn’t the way we think about Autism reflect that fact?
Rather than a one-dimensional line or a two-dimensional circle, I propose that the Autism Spectrum be thought of as a three-dimensional globe, latitude and longitude and all.
Where the grid lines meet, that’s a data point. And because of its three-dimensional nature, these gridlines carry depth to them all the way to the core of our Selfhood, or what makes us who we are.
The resulting patterns of these gridlines form a map of our symptoms and will vary subjectively from person to person. Because let’s face it; ASD is a very subjective neurodevelopmental disorder, and how it affects each individual will vary subjectively from person to person.
And by understanding this simple fact that there’s diversity within neurodiversity, we can begin to heal as a community and finally end the Great Schism of Autism, once and for all.
Will that actually happen, though? Probably not for a long time. People are stubborn, especially when their loved ones are at stake. I’ll be the first to admit that Spectrumites can be some of the most stubborn folks out there. I’m one of them, after all.
But it still needs to happen. Because as Benjamin Franklin famously once said:
“We must, indeed, all hang together or, most assuredly, we shall all hang separately.”
We need to figure out what our priorities are as a community before we can expect anybody else to take us seriously.
Once we determine what our expectations of ourselves are, we can then determine what our expectations of our neurotypical peers are and hold them to those expectations.
Thank you for staying with me this long on your Memorial Day Weekend. I hope you enjoy it and make the most out of it!
Be sure to check out the Late 2017 Putting the Pieces Together Challenge, and may you find peace with yourselves, within yourselves. Rock on, Spectrumites!