A little bit of personal history about myself, but I’m curious to get your takes on it, as well.
There are many overlapping areas between ASD communities and LGBTQIA+ communities (forgive me if my alphabet is inaccurate, please), although I’m positive there’s more than I can be aware of as a single, white, heterosexual, male aspie. The point I’m trying to make here is that revealing one’s ASD can often times feel like coming out of the closet.
[Cue a bunch of tasteless Will & Grace jokes here!]
Aw, hell! I can’t resist. Here’s a gif of Jack McFarland:
I know… I know… I’m disappointed in me, too… (Gif courtesy of Giphy.com)
Before you click away, I’m being totally serious here! Think about it:
You feel a certain disconnect between your own self-identity and the identity you feel the world expects from you. It’s not until you “come out of the closet,” perse, and reveal who you really are to someone, that you truly feel like you’re living your own life.
…And there’s always that nagging vulnerability that the people you’re coming out to are going to respond with some form of negativity. It’s a very sensitive issue for everyone. You know going into it that the public knowledge of your diagnosis will create extra challenges of its own. You don’t want to put others on the spot, but you want them to know, right?
So, I first really became aware of my ASD around 2002-ish. At that time, it was still clinically known as “Asperger’s Syndrome.” Keep in mind, this was an era before people really started paying attention to the prevalence rate of ASDs, and thus, it was considered a negative thing to be associated with. It wasn’t really until 2006, that I fully accepted that yes, I am autistic. I will always be autistic. And there’s nothing wrong with that, in and of itself.
At that point, I just decided to run with it. It became a very large part of my personal identity that I am autistic, and look at what I’m able to accomplish! Nothing “wrong” or “negative” about that, at all. After a lifetime of trying to hide my differences and “fit in,” I felt liberated that I could finally be myself BECAUSE OF my differences.
So in essence, identifying with my ASD was like I came out of the closet. And I’ve never looked back on that decision. I’d rather be hated for who I am than be liked for who I am not.
So, here’s my question to the rest of you spectrumites out there, reading this post:
Have you come out yet? What was the reaction? How did you feel afterward?
I’d love to read your stories in the comments.
Before I go… Real quickly, I want to share with you some more Jack McFarland gifs that illustrate my point. You have NO IDEA how hard it was to pick just the one before. Here goes:
You tell ’em, Jack! (Gif courtesy of Giphy.com)
We are easily amused… (Gif courtesy of Giphy.com)
Some of our special interests are more special than others… (Gif courtesy of Giphy.com)
But at the end of the day, we’re just as human as everybody else. (Gif courtesy of Giphy.com)
Find peace with yourself, within yourself. (Gif courtesy of Giphy.com)
Rock on, Spectrumites! (Gif courtesy of Giphy.com)
Okay, so maybe some of you have seen my recent string of tweets alluding to this post. If you haven’t, get on that. This is important. Also, just to provide a quick unrelated update on that WEGO Health Awards nomination, I was not a finalist, but I appreciate the endorsements I received. It means the world to me to have your support on that.
…But’s that’s not why I’ve assembled the Avengers here today.
Yeah… Sorry, Cap… Didn’t mean that literally…
Okay, so remember when I started the Writing Studies program and joked about it being “17th grade?”
Here, we go… What’s he up to, THIS time?
Get ready for this announcement…
I’m officially enrolled in evening classes to study toward my Ed.D. in Educational Leadership from Saint Joseph’s University!
That’s nice, Sweetie… Wait! What?!
Oh, yeah! The semester started back on August 27. I should receive my Doctorate of Education in May 2022, only a full 15 years since receiving my high school diploma.
But… WHY? Why now, at the very least…
You see, the day I graduated with my Master’s degree, my mother turned to me and banned me from getting a Doctorate right away… at least until I could pay down some of the student loans I had incurred from my previous educational experiences.
I have been waiting four years to make this post. The least everyone can do is be happy for me…
We are! We definitely are!* We’re just curious what your intentions are with such a program.
*Jon hopes this part is accurate. He’s gotten too excited about good news before…
I know some of you are probably wondering what my intentions are with such a program.
I’ve been thinking a lot, lately, about what my role is in the ASD and Neurodiverse communities at large. What can I do now to make life better for these communities later? How can I achieve my goals while helping others achieve theirs? What’s my part in all this?
I know after working in a corporate environment like SAP, I want to do more good by helping more than just the bottom line. I want my ability to advocate to mean something by the end of my time on Earth.
That’s why I’m saying this here and now:
While going for my doctorate will provide me with a few extra letters at the end of my name and take my education about as far as it can possibly go, this is about more than just me.
This is about us. This is about my role in an expanding, related set of communities interacting with one another.
Why study for an Ed.D.?
Because it can take my advocacy to all new heights I’ve never imagined.
Why now?
Because the longer I wait to do it, the less of an impact I can make on neurodiverse communities.
There’s no better time than right now to get out there and do what we can for each other… All of us. Together as a single web of communities.
The way I see it, we have two options:
Continue to fall off the cliff and pray for miracles that aren’t going to come without people like us stepping up.
Do something – anything within our power – to improve the lives of the neurodiverse.
I hope if you’re like me, you’ll choose the latter of the two options.
In the meantime, I’ve started watching Atypical Season 2. I’m about halfway through the second season, and I have to say, I’m very impressed by the effort Robia Rashid and crew have put into addressing constructive feedback from Season 1.
So, rest assured, I am working toward that particular episode of The Role Star.
While everyone waits for my Atypical review, I’m also working on a webcomic about life on the Autistic Spectrum. Announcing:
Coming Soon!
The Jack of all Tirades:
Jon lays out how he sees his life as an autistic adult in no uncertain terms.
Be sure to catch the webcomic as it debuts later this year.
Okay, I have to save some news for later posts, but I promise I’ll be back. I just can’t promise how soon.
Until then,
May you find peace with yourselves, within yourselves.
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…
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:
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!
Some of you may have noticed over the past few days that I have updated all of the branding for The Aspie Dialogues with these images:
The Infinity Puzzle
and
The Aspie Dialogues Banner
Ever since I renamed the site, you pretty much had to figure a logo redesign had to have been coming for a while, right? But why with the infinity symbol, and why with the rainbow colors? Don’t I have a girlfriend? Didn’t I just reference her in the blog a couple weeks ago?
Moving backwards, here:
Yes, yes, and the last two are a bit of a story…
You see, given my strong opinions on the Susan G. Komen of Autism Autism Speaks, I decided to finally take the plunge and join the Autistic Self-Advocacy Network.
Nothing About Us Without Us
I am also gearing up to get my first tattoo, which will be something ASD related. Knowing that Autism Speaks has effectively hijacked the color, blue, I was curious to know if ASAN had an official color. Well…
As you can see from their logo, they seem to favor rainbow colors, but that’s not my only source.
On this Wikipedia article (bear with me, here), located here, I discovered that many self-advocates frown upon the puzzle-piece iconography as harmful to the ASD community and prefer a rainbow infinity symbol instead.
My research also led me to this page, located here, that displays this image, representing the Autistic Rights Movement:
A symbol for Neurodiversity and Autism Rights!
So, now knowing all of this, I set out to redesign my logo… and my subsequent tattoo.
I have a different opinion on the puzzle piece, actually. Instead of viewing it as “puzzling” or as a “problem to be solved,” I see it like this:
Why do we put puzzles together? Is it to solve a problem? Or is it to see the whole picture? Every one of us in the ASD community is a piece of the Autistic Rights Movement. That Movement cannot be seen for its entirety without all of us. Each Spectrumite, every caregiver, relative, friend, loved one, advocate, etc. We are all pieces of that picture that makes up the Autistic Rights Movement.
Therefore, the puzzle piece stays in my new logo. Not to mention, most people will instantly equate it with ASD, so that’s a plus, not having to explain that part.
The infinity symbol in it’s heart represents the Autism Rights Movement. It is a token of my perpetual pledge to keep fighting the good fight for all of us. It’s at the very heart of what I do and why I run this site, after all.
The rainbow signifies that ASD is a spectrum. Also, it is the official color scheme of the Autistic Rights Movement.
With that in mind, I designed the new media assets you see plastered all over the social media accounts associated with The Aspie Dialogues.
So, in short:
More like, ASD Forever!
May you find peace with yourself, within yourself! …And don’t feel afraid to advocate for yourselves! You’re worth every ounce of effort, and it may improve the lives of those who come after you.
I know I’ve been gone for a few weeks. …Right after I said I’d be posting more often, at that, but there’s only so much a mere mortal can do when he’s dealing with a cold, working on numerous projects at work, his pregnant sister’s due in less than three months…
By the way… Congratulations are in order to Understanding Invisible Illnesses’s Jenny P. and her husband! They are due in May! (Not pictured: the pregnancy and the husband.)
You get the idea. Something had to give, and I deeply apologize for the fact that this was it.
So to make up for that, I’m treating you all to another round of…
ASK! AN! ASPIE!
Wheel of Morality… Turn, turn, turn! Tell us the lesson that we should learn!
I usually tend not to discuss my… what should I call them? My dark sides?
BYO Milk, though…
I usually tend not to discuss my dark sides with my readers for the fact that I’m trying to present myself as a positive role model for you guys. However, I’m starting to think that maybe there could be lessons to learn from them. So, here goes…
I have a short fuse. Particularly with my dad, to be quite honest.
Yeah! This guy!
So much so that I felt the need to make my resolution this year to have more patience with him. We just had an argument earlier today centered around the steps we take to achieve greater harmony with each other.
He’s my dad, and I love him very much. Sometimes, too much of a good thing becomes less of a good thing beyond a certain level of interaction… If that makes sense.
I have a tendency to shop online when I’m upset. This was especially difficult around the time my sister lost her first pregnancy just before Christmas 2014.
My default volume is loud. My other volume settings include slightly less loud and way louder still. I can start off a sentence at an appropriate volume, but by the end of the sentence, the other person I’m talking to is asking me why I’m yelling.
And the list goes on…
You may be asking me at this point, “Why are you telling us all this? This seems very personal!” And you’d be right; it is very personal.
However, as I said before, I believe there’s a lesson to all this: No matter how far we may progress with our… I guess to complete the reference, I’ll say our light sides…
No matter how far we may progress with our light sides, we will still always have those proverbial skeletons in our closets for us to work on. We are coping with a lifelong diagnosis, which will always impact our logic, our way of seeing the world, our way of understanding the world, and our way of coping with the world.
We are never done learning about ourselves; not even for a moment. I guess what I’m trying to say is regression is natural, but it can’t be the end of the progression. Because if it does mean the end of the progression, our ASD (or even any other diagnosis we may have) has control of us and not the other way around.
If I had ever given in to any one of my dark sides and quit, I wouldn’t be here right now, typing this for you. Fall down ten times, get up eleven. When you do, just know that I’ll be right here with the The Aspie Dialogues, ready to help you get back in the game. Because it’s not what you do wrong that necessarily defines you; it’s about what you do to learn from it.
May you find peace with yourself, within yourself! Rock on, Spectrumites!
I’ll be blunt: Labels don’t accomplish anything toward acceptance. Isn’t that what our end goal is, anyway? Acceptance? We’ve been fighting for awareness for so long now, everyone and their second-cousin is aware that Autism (or “Autisms” as new research would suggest) exists. So, I guess acceptance should be the next step.
I see many people use labels when they actually mean to discuss their or their loved ones’ diagnoses. What do I mean by this? Here’s an example:
Bill: Did you hear that Autism affects 1-in-68 people, now?
Ted: Yeah! My cousin’s Autistic.
I hope I’m not the only one who caught what was wrong with that conversation. What Ted meant to say was:
Ted: Yeah! My cousin has Autism.
But wait, Jon! That sounds exactly the same! What’s the difference?
Actually, it’s a huge difference! In the first example, Ted used a label to identify his cousin as “Autistic.” This implies that Ted’s cousin is nothing more than his diagnosis. Anyone who has been affected by ASD should know that this is not the case. People diagnosed with ASD (I call us “Puzzle Pieces” if you’re new to the blog) are diversely affected by it.
Some Puzzle Pieces are verbal; some are not. Some Puzzle Pieces have an acute attention to detail most of us could only dream of; some of us don’t. Some of us have a brilliant mind and excel academically, while others struggle with basic concepts. ASD affects us in different ways, but we are always more than just our diagnosis.
In the second example, Ted discusses his cousin’s Autism as a diagnosis. This keeps his cousin’s integrity as more than just a label intact.
Notice how the way he phrases it here: He “has Autism.” This implies that his cousin has his diagnosis; his diagnosis does not have him. He is in control of his Autism, and he’s not defined by it.
Hey, Jon!
Hey, Reader!
Aren’t you the one who calls your blog the “Aspie” Epilogue? Isn’t that defining yourself as a label?
Good question! I don’t see it as “labeling myself” so much as it’s a sort of a self-identity. Before you start raising the red flags, let me elaborate on that.
It’s not a self-identity in that I’m an Aspie, and it defines me. It’s a self-identity insomuch as look at all I’ve been through and I’m still standing. I’ve been through a lot because of my Asperger’s Syndrome, and I’m still standing tall. I’m still functioning, evolving, improving myself to be the best me I can be.
It’s not so much of a label as a badge to be worn with honor and pride that I can endure so much. That is why I call my blog the “Aspie” Epilogue.
My Asperger’s Syndrome doesn’t define me. Rather, I define my Asperger’s Syndrome through my life experiences. That, dearest readers, is the difference.
I’ve been waiting for about a month to write this particular post, but between needing time to myself and just needing to get myself back in action after the start of the new year, this was the soonest I was able to get this out to all of you. I apologize for that. It really shouldn’t have taken me this long to get my act together in the new year.
In any case, I’m back, it’s a new year for the Aspie Epilogue, and now is an excellent opportunity for that Ask an Aspie segment I’ve been meaning to write.
Before the varied assortment of Winter holidays, a page I followed on Facebook (up until this point, and this is exactly why I stopped following it) posted a link to an article with a video clip of the tail-end of what they called a “tantrum” from a child on the spectrum, which involved restraining the child. Both the page and the article championed this method of restraining the child face-down on pillows until he stopped screaming. I will not link to this article because I’m afraid it may give parents a flawed perspective of how to handle this kind of behavior. Personally, I think the only reason the child calmed down was because he simply exhausted himself and couldn’t carry on anymore. It happens; I’ve been there. I was once a child, too. I had many of these situations. Some were handled properly; some of them weren’t. That’s not what I’m here to discuss.
To provide some context to this child’s situation, the article mentioned that his mother allowed a video crew to film him as part of a televised documentary without explaining this to her son (RED FLAG #1). The moment they entered, the child figured out what was going on and had what I will term a “meltdown.” They called it a “tantrum” (RED FLAG #2). Their chosen method of calming the child down was to restrain him face-down on pillows (RED FLAG #3) and record the incident to share on television and social media, which is where I found it (RED FLAG #4).
Where to begin with what’s wrong with this picture? I guess I’ll just go in chronological order as I found the red flags:
RED FLAG #1: She didn’t explain it to her son.
Folks, any decision pertaining to a person’s disability, whether or not they ultimately get a say in the decision making process, should ALWAYS be discussed with that person so that they understand what is going to happen to them. Period. The more people are on the same page, the less likely people are going to be upset. I think if she had explained it to her son beforehand, this wouldn’t have happened to this extent, or at the very least, the anger would have been worked through before the camera crew arrived.
RED FLAG #2: Meltdowns vs Tantrums.
I’ll elaborate more on this after the red flags, but this was not a tantrum. This was a meltdown, and understandably so. To me, the difference relies upon the motivation for the incident, or what I’ll call the “inciting incident.” If the inciting incident is I want a candy bar, but Mom says I can’t have it so I act out in a public display, that’s a tantrum. If, however, the inciting incident is too many people in the room flashing too many bright lights and making too many noises that are too loud for me to physically handle, that is a meltdown. I believe the latter is what occurred in this instance, not the former. Too many people don’t understand the difference.
RED FLAG #3: They restrained him face-down on pillows.
I’m going to go ahead and be blunt when I say this: THERE IS A RIGHT WAY AND A WRONG WAY TO RESTRAIN YOUR CHILD WHEN HE OR SHE IS ACTING OUT! LEARN THE RIGHT WAY! PLEASE!
When I worked at the Kinney Center, we had to learn Nonviolent Physical Crisis Intervention (NPCI) and certify that we were up to date on procedures once per year. There are certain steps to take before resorting to NPCI, which if successful, will calm the child down before he or she acts out. If you need to resort to NPCI (as a LAST resort), there are certain steps to take afterwards to ensure that the child is calm, that you are calm, and to maintain a rapport and trust between the two of you. As for the actual NPCI, itself, there are specific holds that ensure that the child can still breathe properly, and that he or she cannot harm you nor anyone else. In fact, I’d be surprised if he or she could do more than pinch his or her own armpits in those holds. The key takeaway from this is that your child is not able to harm himself or herself nor anyone else, and you are not harming your child. I would recommend learning NPCI through the Crisis Prevention Institute (CPI) or a similar organization.
What you don’t do is just restrain the child willy-nilly in ways that the child may not be able to breathe or in any other way that might bring harm to your child. You certainly don’t do it face-down on a pillow. What are you trying to do, suffocate him? It doesn’t require rocket science to learn the proper techniques, so please don’t put your child in danger when trying to calm him or her down. Moving along…
RED FLAG #4: They recorded the meltdown and shared it with the public.
I know I’ve often said I don’t have anything to hide, but even for me, there are moments in my life I’d rather not relive. My various meltdowns fall verily under that category. Aside from the potential for cyberbullying or even bullying in general, they haven’t handled any part of this situation correctly so far, so to then trumpet it over the internet as the “right way to do it” concerns me for the sake of other children with ASD whose parents may not know better and try this for themselves. From a more personal perspective, when I calm down from a meltdown, I feel very self-conscious about my behavior during said meltdown, so why would I want any video footage of it floating around in cyberspace for all to see? I’m sure I can’t be the only Aspie to feel that way, either.
So, here’s my interpretation of the events as I believe they actually happened:
Mom brings in a camera crew for a documentary about her son’s ASD without telling her son. The camera crew arrives, sonny boy figures out what’s going on and melts down. Mom responds by restraining her son incorrectly, face-down on pillows while the film crew records the incident. Mom then shares the tail-end of the meltdown over the internet, thus shaving out the bulk of what actually occurred and making the whole incident seem more mild than it probably was in reality, conning countless parents into believing this is how to properly respond to a meltdown, all while calling it a “tantrum.”
So what is a meltdown and how exactly does it differ from a tantrum in the first place?
A tantrum is the acting out incident that occurs when somebody doesn’t quite get his way. The theory behind this is, “I didn’t get my way, so I’m going to give you a hard time until you acquiesce to my demands.” Tantrums don’t necessarily have to be exclusive to those with an ASD.
A meltdown is the acting out incident that occurs when somebody reaches maximum sensory overload, maximum emotional overload, or just a situation he physically cannot cope with and cannot figure out how to handle appropriately. Think of this person as a nuclear reactor having a core meltdown. The meltdown has already begun; it cannot be prevented. It will end in one of two ways:
1. The Three Mile Island Way: Everybody plays their role and does their job correctly that a full nuclear crisis is averted. The person acting out calms down and everybody moves forward the best they can.
2. The Chernobyl Way: The meltdown cannot be stopped and a full nuclear crisis commences. The consequences of this can seriously impact the lives of the person acting out and his loved ones for quite a while afterward. These consequences can include arrests, commitments to rehab, or just broken trust and relationships. *Personally, I’d rather end the first way if I had to melt down.
Sad to say, but I’ve actually resulted in both in my life. Fortunately, it only took ending the Chernobyl Way once to get my act together, but the unavoidable truth is it was preventable. Nobody knew how to prevent it at the time. I’d like to think we all in my family have learned something or another from that incident. I’m just glad nobody filmed it and shared it on the internet. The same cannot be said for that young boy who was blindsided by a camera crew thanks to his mother.
By now, you already know Robin Williams took his own life over this past weekend. I’m not here to rehash what you already know. I write this post to help (myself) make sense of a tragic moment in our lives.
For those of you who were too young to have seen Mrs. Doubtfire before, this scene will always resonate with me. Here, Robin (dressed as Mrs. Doubtfire) explains via a children’s TV program some of the changes life brings as we grow older. Sometimes, parents get divorced, but that doesn’t make it the affected children’s fault. In the end, he assures a young viewer that he will be okay, even if he doesn’t feel like it will be in the moment.
But sometimes, hope isn’t enough on its own. I previously wrote about the five different types of moments we experience in our lives. You can read about it in more detail here. Robin Williams experienced an Ugly Moment.
He was a man who brought tremendous joy and laughter into countless people’s lives. I’ll admit it; Patch Adams was my favorite Robin Williams movie. Robin lived to inspire people and make the world a better place to be, if only for a moment. He possessed a talent of taking a Bad Moment and making it feel like a Beautiful Moment.
Case in point: I remember about 5 years ago, when Conan O’Brien was airing his final episodes of The Tonight Show. Robin Williams was one of his final guests. This was a time of much tension between fans of Jay Leno and fans of Conan O’Brien. Robin sang Conan a spirited song and tap danced on Conan’s desk. The song and dance number had to be censored for language, but it still aired. In that moment, Conan was laughing so hard, he probably forgot that he was losing his job.
Robin Williams could make anybody laugh, except for himself.
Suicide is a very serious topic. Say it in schools, and the adults around you are required by law to take it seriously. They can’t take the chance of calling a bluff and receiving a phone call later on that a child has taken his own life.
Your life impacts the lives of everybody you surround yourself with. If they are decent, humane people, they will care a great deal whether or not you’re alive and well. They will celebrate your life and mourn your death. They will notice if you’re not around.
I’ll be the first to admit that I’ve verbally wished I would die before in front of my friends. The good people that they are, this disturbed them a lot.
Sure, in a rational state, I wouldn’t have the conviction to end my life. But what happens when my depression sets in, and I can’t think rationally enough to tell myself, “I matter. I’m not aburden on my loved ones?”
This past summer, two of my mother’s former co-workers informed her that their sons had both (separately) committed suicide. And now the man who radiated joy and laughter has, too.
My mother has already forced me to promise to talk about it if I ever felt like I didn’t want to live anymore. Friends. Family. It doesn’t matter whom you feel comfortable talking about it with, you just need to talk to someone.
Tear down the wall and let your loved ones help you.
For those of you who fear someone close to you may be on the verge of suicide, here’s what you can do:
TALK TO HIM ABOUT IT.
That’s it. It’s that simple. Let him (or her) know you care enough to say something. Let your loved one know that he’s not a burden on you or anyone else. Let him know that it’s okay to have an Ugly Moment in life.
Life moves on, whether you’re around for it or not. Not having you around is more of a burden to bear than your presence around us. It’s okay to be yourself. Some people take years to learn this lesson, others never do.
Even if you don’t feel like communicating your thoughts of suicide with a loved one, do it anyway. It’s a mental sign that tries to tell you that you’re not thinking clearly. Give it some time to turn around. After all, after the storm comes the rainbow.
Shine on, and find peace with yourself, within yourself.
PS – The national suicide prevention hotline and relative information can be found here. If you or someone you know has these feelings or you suspect he or she has these feelings, please call immediately. Thank you.
I know I’ve been absent from the blog for a while. Long story short, my father recently broke his hip, slipping on the ice about a month and a half ago. Time to write on the Aspie Epilogue has been scarce.
Perhaps you’ve heard the latest from the CDC, but for those who haven’t, I just learned today that ASD now affects 1 in 68 people. For those of you playing the home game, that’s a dramatic increase in prevalence over the past two short years.
Welcome to the blog where the numbers DO count, and the points DO matter.
This means that instead of 1 in 88 children growing into 1 in 88 adults with ASD, 1 in 68 children with ASD will grow into 1 in 68 adults with ASD. That’s a big difference from the 2012 numbers. A few years ago, it was 1 in 110. Clearly, this is a trend that’s not going to stop any time soon.
What bothers me about this is that now there is potential for another push to “cure” ASD. For many of us, this implies that there is something “wrong” with us. That idea is a myth.
We operate by a different brand of logic from the neurotypicals who create this myth. Even if a brand of logic is flawed — we do have a more literal definition of the world around us — it’s still a brand of logic.
It’s not that we can’t understand the world around us and contribute to it. It’s that our brains are wired to see the world differently than others. That’s not a problem, and it certainly doesn’t require a “cure.”
What it requires is resources to go into helping us use our way of seeing the world to advance it.
That’s enough of that rant for today. I have another important announcement to make today.
I’m still looking for suggestions for the 2014 Puzzle Pride Award recipient! I’ll give you guys all of April to comment and discuss on the blog about it.
If we get to May and nobody’s been nominated yet, I’ll have to call on random people, which is less than ideal for the intent of the blog. I know we don’t it to come down to that, so let’s get the ball rolling.
I figured that since I’ve been gone for a while, I’d return with something fun for this round of Ask an Aspie.
Bear with me on this. It’ll work; I promise.
Just last week, I tried to calculate various statistics about the prevalence of ASD for an Editing class assignment. Ultimately, the numbers were cut from the paper, but it apparently didn’t matter. I realized today that my method for finding these statistics was inaccurate.
I had assumed from the data that 1/54 were boys was the same as 1/54 people with autism were boys. That’s where my numbers fell apart.
Like that, but with more numerals and less symbolism.
So what are the actual statistics? Well, here’s what I found out:
US Census Bureau fun-fact: There were an estimated 313,914,040 people living in America in 2012.
I assumed that 1/54 of 1/88 of 313,914,040 was the correct answer for how many males are on the Spectrum in America. I realized today that I was operating under an inaccurate assumption. It’s not 1/54 males with ASD in America; it’s 1/54 boys in America. So I went back to the Census data. What I should have calculated were how many boys there are in America and how many men, then I should have calculated the ASD prevalence from there. Just for inclusivity, I looked up the same numbers for girls and women. Unsurprisingly, the split between male and female in America is just about half. No, really! It’s literally 50.8% female and 49.2% male!
I also discovered in my research that the prevalence is roughly about the same whether we’re talking about adults or children, so I used the same ratios for both groups. That would be 1/54 males and 1/252 females in America.
Please note: All of these numbers are American. Sorry, Kim…
So now, here are the final numbers broken down in various ways.
313,914,040 people lived in America in 2012.
That makes roughly 3,476,516 people with ASD in America in 2012.
Out of that, 2,863,013 were male, 613,503 were female. Furthermore, 2,647,093 were adult, while 829,423 were children under the age of 18.
To break down these numbers still further:
2,179,959 were men; 467,134 were women.
683,054 were boys; 146,369 were girls.
So, there you have it, people!
The next time somebody says you are one in a million, you can give them the correct statistics.
