Categories
PSA

We Need Another Talk…

Now, I’m as much for patient rights and autism acceptance just as much as I’m for acknowledging the capabilities of all Spectrumites. All as much as the next Spectrumite. And that’s why I’m starting to get angry at a certain myth wafting around the Quora forums like that bad stench you can only get from a fake-news burrito wrapped in uneducated conspiracy theorist fecal matter.

I’m, of course, referring to the ongoing (unsubstantiated) claims that ABA (or Applied Behavioral Analysis) is some kind of torture NTs use against Spectrumites to get us to “comply.” The usual criticisms I see floating around the aether is that ABA uses electroshock as a primary method, or that ABA somehow causes emotional or physical trauma to the Spectrumite by attacking what it means to be autistic.

There’s a lot to unpack here, but I’ll try to keep this rant concise. I don’t proclaim to know everything about neither ABA nor ASD, and as a Spectrumite, I do understand that what works for one does not always work for all. This is my opinion. Solely. I do not project to speak for all the ASD communities out there in Web-Surfy-Land. Nor does it necessarily represent the opinion of the Aspie Dialogues.

The first myth I have to debunk – both because I’ve at one point in my life work studied at a center that primarily adheres to ABA and because I’ve experienced it, myself, during my early childhood – is that it involves electroshock or otherwise similar physical tortures. It doesn’t. I don’t even know where that myth even came from, but it’s 100% FALSE. I could say the pope is a green frog wearing a poofy, rainbow wig and a pair of parachute pants, but that doesn’t make it so. (Although, as a general aside, that is something I’d like to see in real life, someday…)

Likewise, just saying ABA is physical torture on the internet doesn’t mean it actually is. I’ll clarify for those of you in the back row: ABA IS NOT PHYSICAL TORTURE. PERIOD.

I don’t buy into the strictly Neurodiverse argument that it’s torture because we’re all different and we should celebrate our differences because we’re autistic and we’re just that special that we get to do whatever we want just because. I get it. We’re good at some things, but here’s the flip-side of that coin: we’re also not as good at some things and could stand to improve in those areas.

Constructive criticism is NOT emotional torture. If you’re doing something socially unacceptable (for example: hitting other people and screaming when angry), you need to stop. Being autistic does NOT give us a free pass to harm ourselves or others. ABA reinforces the idea that we are not excused from society just because of our ASD. That’s probably why the Neurodiversity movement wants it gone; it’s easier than doing the work it takes to learn techniques for managing one’s anger.

We are currently only sitting at a one-in-59 prevalence ratio. That means that we’re barely 1.7% of the population. Until we outnumber the NTs, just remember who has the majority in a world where majority rules, especially when it comes to society and social expectations.

That an NT may expect better behavior from you isn’t abuse; it’s the expectation that you have the ability to make more socially acceptable choices, which in most cases, I’m going to suggest that you probably do have. We may be special, but we’re not demigods or the like. We’re just different people with different needs. And ABA therapy is just one way of offering techniques for fulfilling those needs without breaking society.

Quite frankly, most of the authors of the posts I’ve seen online seem to be of a younger generation than I am. Most of that generation had much more resources available to them than my millennial generation had, and we had to fight tooth-and-nail for every ounce of help we got. Sometimes, it wasn’t anywhere close to enough. Sometimes, we didn’t even benefit from the resources we fought for, but at least you were able to. And here you are, throwing all those resources back in our faces because somebody suggested that you’re not a perfect being. No human is. No living thing is. Therefore, nothing we conceptualize or create will be. Ever.

If there’s a part of the system that you feel isn’t working, work to fix it. Don’t just scrap it and feign perfection. Believe me. There is still SO much more wrong with the current system, but if we give up on it, it won’t get better. Let your needs be known, but don’t spread myths and hypothetical situations wrapped in propaganda. We can fix the system, piece by piece, together. Let’s work with each other instead of against each other.

Because if I don’t know or understand everything there is to know about ASD and the various resources out there for it, then it stands to reason that not everyone else might, either. And if you don’t know something, learn about it from a reputable source. No, Google is NOT a reputable source.

Tune in next time, when I tear into the opposing side of the Great Schism of Autism. It’s not that I oppose Neurodiversity, but I do oppose the idea that we should get to do whatever we want just because we have ASD as our crutch to fall back on. I’ll get off my moral high horse when everyone else does the same. Pointing fingers and playing the blame game is not going to solve anything.

…And that is my unpopular opinion. May you find peace with yourselves, within yourselves.

Categories
PSA

PSA: Words Defy Me…

Now I know how Mom felt when I was 15; I’m stunned speechless. But, because a former Scientologist saw the Tide Pod Challenge (DO NOT PARTICIPATE IN THAT, BY THE WAY) and said, “Hold my beer,” I don’t have that option anymore.

Apparently, some desperate parents out there have decided that The Great Schism of Autism is not worth resolving. This, dear readers, is why we cannot have nice things.

*sigh* Introducing… the new “PSA” category for The Aspie Dialogues blog posts.

I’ll cut to the end and show how I got there. Here goes…

PLEASE! DO NOT… I REPEAT…. DO NOT FORCE YOUR NEURODIVERSE CHILD TO CONSUME BLEACH AS A “MIRACLE CURE FOR AUTISM.”

You think I’m making this up. I can see the looks on your faces.

Jon, that’s horrifying! Who would ever…

Desperate parents trying to ‘cure’ autism by giving children bleach …

Parents are making their children drink bleach to ‘cure’ them of autism

Oh. Wow. I… Wow.

Stop the planet; I want to get off! Just drop me off at the nearest sun. I’ll take it from there.

Even IFLScience picked up the story:

Parents Are Forcing Children To Drink Bleach To “Cure” Autism …

I know IFLScience isn’t exactly the most credible source on the internet, but when they pick up a story like this, I listen.

The Autism Wikia page on the subject

Dear lord! There’s even one of those, too?!

I’m afraid it’s that much of a problem in the community.  Just read this excerpt from the Autism Wikia page:

Parents are urged not to use bleach on their children. Autism is better than death. As autism is lifelong, and parents should instead focus on therapies that will help their individual child grow into a happy, healthy autistic adult.

Let me highlight the most important sentence of that paragraph for you, in case you need to save it for later:

Autism is better than death.

One more time:

AUTISM IS BETTER THAN DEATH.

I used to think this was common sense, but apparently, the internet applies its logic wherever and whenever it wants.

So, thank you, Church of Scientology. It wasn’t enough you had to blur the lines between religion and hoax, now it seems you’ve moved onto more relevant lines to blur. Lines like health, science, and hoax should never be blurred. EVER. This is how we end up in situations like The Great Schism of Autism, in the first place.

When a Wikia page feels the to clarify that any atypical condition of life is better than death, that’s a huge problem. It’s one that requires our immediate attention to rectify NOW.

So, hold MY beer before I throw it at the next NT I see within range.

A picture is worth 1,000 words…

OH! And in case I didn’t make myself clear before, stop giving your kids bleach drinks and enemas. Kthxbye!

This has been an Aspie Dialogues Public Service Announcement.

Categories
FAQ Life Putting the Pieces Together Challenge

The Great Schism of Autism

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.

“Wait… What?”

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…

https://www.autismspeaks.org/site-wide/cure-autism-now

Yeah, about that…

http://autisticadvocacy.org/tag/autism-speaks/

Guys! Hey! Take that outside!

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.

We’ll listen to your cries for help. Just as soon as we’re done wiping you off the face of the Earth!

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:

http://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum

TL;DR:

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.

Meet the Aspie Dialogues Model of the Autism Spectrum!

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!