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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!

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Life Putting the Pieces Together Challenge

Changing the Game: Late 2017 Putting the Pieces Together Challenge

So, I’m going to go out on a limb, here, and say that my prompt for the “Early 2017” Putting the Pieces Together Challenge may have been too polarized for what I wanted to accomplished.

That’s my boo-boo.

I know. Making this visual pun hurt me, too…

So, why don’t we adjust the rules of the game before we blow the final whistle?

Announcing:

The Late 2017 Putting the Pieces Together Challenge!

For all the updated dates and rules, please refer to the Campaign page.

Here’s the new prompt:

I want to know what drives you in this life. Is there a single motivating force you believe in or moral/ethical code you adhere to? When all else fails, how do you carry on? What gets you through your day and motivates you for tomorrow? Do you have any quotes, movies, books, etc. that inspire you to keep going?

I want this blog to be the source of a positive type of energy. By explaining what our “guiding lights” are, so to speak, there’s even the possibility that one of you can help another person out there who may be seeking guidance or a friendly voice to talk to.

Isn’t that what this life should be about in the first place? People helping each other, lifting them up instead of always putting each other down.

May we all help each other find peace with ourselves, within ourselves. Rock on.

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Putting the Pieces Together Challenge

The 2017 Putting the Pieces Together Challenge is On!

Hello, again, dear Spectrumites!

Yes, I know the Holidays were… hectic… for some.

Okay, maybe not THIS hectic…

But, seizure-warnings aside, (and by the way, WARNING! THE ABOVE IMAGE MAY NOT BE SUITABLE FOR READERS WITH EPILEPSY, CHILDHOOD FEARS OF THE NOSTALGIA CRITIC, OR GENERAL FAITH IN CHRISTIANITY, AND MAY CAUSE SEIZURES, ANXIETY, OR GENERAL OFFENSE AT THE ASPIE DIALOGUES AND THE NOSTALGIA CRITIC. YOU HAVE BEEN WARNED.)

Any way, all seizure-warnings aside, the Aspie Dialogues has fully transitioned over to WordPress.org now and is ready to take on 2017 after a year that had many wondering…

What the HFIL was that?!

All right, so I guess we all haven’t seen that episode, now have we?

2016 was a year that many of us would much rather forget.

Except him. He’d like to savor it. He’d like to savor it and ride it for all it’s worth.

And there lies the Million-Dollar Question:

What can we do to help those who are going to be impacted the most by his policies?

…Or put into terms more approachable by The Aspie Dialogues

What can we do to help those Spectrumites who are going to be impacted the most by his policies, such as the Republican stance on repealing the Affordable Care Act? Adults on the Spectrum find it hard enough to find support and resources for their Autism! How can we fight back?

I’ve always been a proponent of telling it like it is. Right now, we need everyone, and I mean EVERYONE reading this to take a stand and tell it like it is.

That’s why I’m starting early with promoting the 2017 Putting the Pieces Together Campaign.

It will have the same deadline as last year’s and I hope to hear from more people than I did last year.

For this year’s challenge, (and parents, legal guardians, and caregivers, please jump in on this, too!), I want all the adults on the Autism Spectrum to weigh in on the debate by sharing their stories with the world with the following questions in mind:

What has been your experiences in trying to obtain support and resources for your Autism Spectrum Disorder since aging out of the system and “falling off the cliff?” Has it been an easy time or a hard time? What do you attribute to that?

Please consult the Challenge page for more information.

The world’s turning into a scary place, but we can start to make it better, one step at a time, when we stand together.

Let’s make 2017 better than 2016. By far.

May you find peace with yourselves, within yourselves. Rock on.

 

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Guest Post Putting the Pieces Together Challenge

Guest Post: Jeff W. Shares His Insights with His ASD.

This is the part where I suggest I switch to a monthly format and work my way up to a weekly format. Clearly, so much has been going on at work that keeps me away from The Aspie Dialogues.

When I last posted, I was trying to encourage other Spectrumites to share their messages and experiences with ASD with the NT world. I obviously missed my deadline to post the results on the site, but since I only received one response from a particularly courageous soul I happen to work with, I spoke with him about making his message a guest post. We’re making Aspie Dialogues History, here, Spectrumites and Puzzle Pieces! I’m just as excited as you are! Our first guest post!

So, a little about my colleague, Jeff…

He is a very kind man, who will always chip in and support others, no matter the personal sacrifice he may endure. So, for him to come out and self-identify for this cause is amazing to me because in today’s world, that’s asking for future employers to not take you seriously.

…And that’s precisely why Jeff wanted to speak up. To change NT perceptions of us. One voice at a time. So, without further ado, here’s what Jeff had to say about the Putting the Pieces Together Challenge:

Where do I even begin? I think for starters, everyone has to understand that each person on the spectrum has their own set of challenges and difficulties. Some people have sensory issues where one constant distraction in the physical environment negatively affects their productivity. Others face the challenge of socializing or coping with change and transitions. Also, the mass media and some people tend to make unfair and judgmental statements about people on the spectrum. They think they know everything and can speak for everyone but they truly can’t. Each and every single of us who is on the spectrum is different in our own ways and people need to realize that.

On a more personal level, I wish people were more accepting of who I am instead of belittling and hating me for what I’m not. I may not be the most athletic, most talkative, or even the best looking person you’ve met but I’m a human being. A human being with real feelings, real thoughts and real struggles in life! Friends at first sight isn’t always the case but if you choose to welcome me with open arms, really get to know me, regularly touch base, and always make me comfortable and happy to engage and interact with you, that is the key to establishing and maintaining friendship or a network.

The bottom line is that individuals with autism are HUMAN and each individual deserves and needs to be treated like one. We can succeed in life like most people do but if that is going to happen, we need to have the right and accommodating environment. How exactly? By always having the considerate, compassionate and altruistic support from everyone around. Not just from family, but from managers, work colleagues, mentors and friends.

Jeff W.

Now, Jeff touches upon several topics I touch upon on this site, and I just want to take a quick moment of your time to elaborate on some of them.

Jeff begins by mentioning that everybody on the Autism Spectrum has his or her own set of challenges and difficulties, and that not all of them are going to be the same for everybody. If there’s one thing I love mentioning on The Aspie Dialogues, it’s that ASD is a uniqueness that is as diverse as the people whose daily lives it affects. That is to say –as Dr. Stephen Shore once suggested…

If you’ve met one person with Autism, you’ve met one person with Autism.

Jeff reiterates an important fact of life we must all learn:

If things are ever going to change for the better for Spectrumites, everybody must first acknowledge that we are all unique HUMAN BEINGS, just the same as any NT. He goes as far as to suggest that we can be as successful and as integrated with society as any other human on this planet. We just need to be treated with the same respect and dignity that comes so easily to NTs.

We are just as happy to interact with you as you are with other NTs, but you have to meet us halfway. Relationships are a two-way street. I believe that’s the point Jeff is trying make with his second paragraph.

As for his concluding paragraph, Jeff sums up everything we all want to share with the world with one definitive sentence:

The bottom line is that individuals with autism are HUMAN and each individual deserves and needs to be treated like one.

…And when we get right down to the purpose of the PPT Challenge or sites like The Aspie Dialogues, isn’t this what everybody’s end goal is? Don’t we all want to be treated as a human individual?

Don’t we all have the moral obligation to treat others with the same mutual respect and dignity we would want others to treat us with?

I’m going to leave you with this thought to mull around on until the next time.

Thank you, Jeff, for participating. Just so you all are aware, Jeff is an extremely talented writer in his own right (Or should I say “in his own… write?” Get it? *rimshot*). This message only scratches the surface of what he is capable of.

May all Spectrumites find peace with themselves, within themselves. And may we all eventually see the day when Jeff’s talking points come to fruition for everybody.

Until then, we’ll have courageous individuals like Jeff to help guide the way.

Thank you, and goodnight.

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Putting the Pieces Together Challenge

Keep the Fires Alive!

As I’ve been looking over the Facebook Insights page for The Aspie Dialogues since last week’s call to action, I’ve been very impressed and grateful for the numbers I’ve been seeing.

At the time of this writing, that post has reached 454 people, garnering 14 clicks and 9 likes, comments, and shares. I’m almost sad in a way; sad that I may never get a response like this again if I don’t keep raising the bar. (I’m still gonna try, though. I didn’t get this far by giving up…)

That’s FANTASTIC momentum, but we can’t stop here! We have to keep the momentum building right up to the deadline for submissions.

So, I’m going to ask each and every one of you to share the Putting the Pieces Together Challenge with at least five people in your circle of friends. I know, I know. It’s imposing a little bit, but if each of you emails five people, who each email five people, who each email five people… See where this is going?

Don’t think for a second that just because you’re Neuro-typical, that means you can’t participate, either! Even if you’re an NT, you can still participate if you are a close part of a Spectrumite’s life.

For example, you could be a parent, or somebody who works with a Spectrumite, or a close friend, sibling, or other close relative. ASD affects you, too, in a more indirect way than it affects your loved one/friend/co-worker. You still have your thoughts and experiences with ASD you wish you could share with others who aren’t affected by it.

I want to hear from everybody. A painting doesn’t depict a complete picture if the artist only paints with one color, so why should we  hear from only one side of the story?

Please, help make this the biggest success this can be! Share this with as many people as you think could benefit from it! Keep the fires alive! Build that momentum! And while you’re at it, share your thoughts with the Putting the Pieces Together Challenge!

Am I missing anything? Do you have something to add? Maybe you just want to contribute to the conversation? My mind is always open to discussion, so why not leave me a note in the Comments section, below?

As always… May you find peace with yourself, within yourself! Rock on, Spectrumites!

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Life Putting the Pieces Together Challenge

Putting the Pieces Together…

One of my primary goals for The Aspie Dialogues is to promote meaningful discussion (Dialogue, anyone?) on the topics that concern us as the ASD community.

I realize that the term, “Aspie,” may technically be widely considered defunct nowadays and that it refers to only a fraction of the ASD community, but it’s been so engrained in my self-identity since I became aware of my 1998 diagnosis some time around 2002 or 2003, that I felt it would detract to my blog’s meaning if I didn’t include it in the title.

But what does my blog mean, anyway? And while we’re at it, what is the meaning of ASD, in the first place?

Surely, my answer will be different than any other Spectrumite’s. After all, if you meet one Spectrumite, you’ve really only met just the one. ASD is just as diverse as the people it affects in its symptoms, its circumstances, and the cultures it creates. That doesn’t even factor in the countless number of communities dedicated to ASD and the Spectrumites.

So, with so many versions of ASD out and about in the world, how can any one person attempt to define ASD conclusively? It’s too subjective a condition!

The answer here, dear readers, is that we can only attempt to define what ASD means to us as the individuals affected by it, subjectively.

Now that we’ve gotten this far, what does ASD mean to me?

Quite frankly, I’m still figuring that out, myself. It’s part of the reason I kept the blog after leaving the Kinney Center in 2011. I may never fully figure it out in my lifetime. It’s like asking God, “What’s the meaning of life?” The world may never know.

This is a topic I want all of you out there, reading this to think about over the next couple months as we head into the 2016 Puzzle Pride Campaign.

Instead of suggesting nominations for the site (because that worked out so well, last year…), I’m hereby issuing a challenge to all of you to think about who has supported you the most through your diagnosis (or diagnoses, because some people have more to cope with than others) and send me any special message you want them or the rest of the world to know about your challenges with ASD. This can be an anonymous message, if you so desire. Just know that I will post your first name and last initial unless you tell me not to.

I’m going to post them here, on a special page on the site, for all to see in April. So, please, start thinking about what you want to say, now!

We’re going to call this the Putting the Pieces Together Challenge. I’ll post more details on the site, later. And no, this does NOT replace the Puzzle Pride Campaign. That is separate.

I’m counting on all of you to make this work. It’s my hope that through this challenge, the world will come to understand what ASD means to us that much better and accept us for who we are and what we cope with on a daily basis.

We all have so much to say; let’s let our messages be heard. No holding back!

May you find peace with yourself, within yourself. Rock on, Spectrumites!