The Astonishing Confessions Of an Unknowing Autistic Boy Imagine never having heard the word "autism." And what's a spectrum?

The Astonishing Confessions Of an Unknowing Autistic Boy Imagine never having heard the word "autism." And what's a spectrum?

Yes.  That’s unknowingly autistic me in Sixth Grade.  Make all the jokes you want.  I’ve heard ’em all before.

 

Close your eyes and…NO wait!  Forget that.  If you did that you’d never get through this article, but keep the thought in mind and throw in some soft music after and only after you finish reading.

I’m a high functioning autistic with Asperger’s and to me that was funny.  If you’re not laughing, let me say that another autistic would be laughing right now.  It’s really that good to think that I would suggest you close your eyes as you begin reading some information that could be very helpful or possibly even change your life!

The truth is that I grew up in the olden days, I was a junior in high school before we got computers in high school and we had those floppy discs and some “C:/” somethingorother.  The words, “autism” and “autistic” were first used in schools ten years after I graduated in the min ’80’s.  There was no spectrum until four or five years ago and, “Asperger’s Syndrome” wasn’t too far behind, “autism.”

I was a weird kid, not THE weirdest, but pretty close. Not really a traditional geek, dweeb, nerd nor whatever it is that the kids are calling it these days, I was just strange.  I was the outsider.  Though an athlete in the top 25-30% of his middle school, I often found myself on the very end of one bench, watching the game and wishing I hadn’t been told I wasn’t needed.

Starting in fifth grade and going all the way through high school, I went to Christian school.  It’s at that point in my life that I really remember being publically ridiculed in classrooms full of mainly fifth-tenth graders, by the teachers, for being autistic and not knowing it. 

Believe me when I say those memories stick with you.  Especially when you’re not Dutch in a high school where 85-90% of the students and faculty were Dutch Christian Reformed.  The chants of, “If you ain’t Dutch, you ain’t much,” still ring in my ears from time to time.  I was tormented for being Lutheran and half German-half English  

The last few weeks, in particular, I feel like I have to explain nearly everything I say and I hate it not only because it sucks in ways you can only imagine but also because it makes me sound like a pompous douche, which I do my best not to be.  I’m not a pompous douche, I’m just autistic and don’t take crap for being that way.

There were happy moments in my childhood to be sure, but honestly, unless I think really, really deeply in my mind and really focus, I can’t remember them.  I came from a home where my parents were married for 46 years when my dad passed away from colon cancer., so things were pretty steady on the home front.

J.R. Reed www.notweirdjustautistic.com Not Weird Just Autistic

Corner licks were never a problem, but tell that to the coach…

I played two seasons of little league, badly, without ever once getting a hit and soccer poorly until I hit about 16. Around tha ttime I gained coordination and was finally good enough to get a soccer scholarship from a lower mid-level NAIA school located in a town in Nebraska where the students made up half the population.

What that means is this.  I was just good enough for a nothing school that I had applied to and that didn’t recruit me, so I became a, Uh, I seriously don’t even remember what our mascot was.  And I don’t care enough to look  Anyway, I became one of them and I got my traditional number 16.  And I played.  On a pretty regular basis.

You see, it turns out that the coach was also the economics teacher and, having no actual soccer coach on staff,  he agreed to go to a summer camp to learn how to coach soccer.  Every player on that team knew more about the game than Coach Whatshisname.  If you’re drinking something I beg you to empty your mouth before continuing.

It also turns out that coach coached directly out of the manual.  The book says that on week 8 practice 3 you highlight various moves on corner kicks.  Did it matter that we scored on an overwhelming average of corner kick opportunities but that for some reason we loved letting the wings in behind us and the opposing offense is destroying our walls?  Nope.  Because that day we were working on corner kicks for two hours.

God help us, we were mediocre in spite of ourselves. 

I was the backup goalkeeper and a pretty physical two-way halfback.  There were times we would just let go, find our groove and play a street game.  There were als0of  a lot of times there was physical punishment for not plying his 1950’s era textbook style in the fall of 1984.

College had its own set of problems, but let’s trip farther down memory lane and visit the sixth grade me above.  I remember virtually nothing about my much younger days, but my first memory and only young memory is being four and sitting the stairs of our rented condo in Cypress, CA.  We were moving out and just a  few miles away to a brand new home in a city called Seal Beach.

The next thing I remember (seriously) is being in fifth-grade and having my teacher call me weird, stupid and lazy, I heard those same three words all the way through ninth grade.  Its as if, “say this to him on a regular basis” was written in Sharpie on my permanent file.  I wonder if there are still files going back to the late 70’s that I could look at to verify that?  I may now be on an Aspe mission.

I also remember my mother telling me constantly that I wasn’t living up to my potential.  To my brain, which at the time I had no clue was wired differently than anyone else’s or that such a possibility even existed, everything is logical.

To live up to my potential is to succeed. To not live up to that potential, is not succeeding, and not succeeding equals failing.  I didn’t understand until many years later that she never meant it the way I took it. 

In fact, she was trying to encourage me, but because I was on a different wavelength from her, as is most of society, I took it literally and logically and heard my mother call me a failure, even though she wasn’t calling me that at all.

There were other thingsfrom my childhood, such as coaches telling me they only played a half a game because they had to and being called “Weed” growing up because of a speech impediment which has now gone away. 

J.R. Reed www.notweirdjustautistic.com Not Weird Just Autistic

BUllying, especially kids, is never cool.

There were the things that I was called by the students, understanding that back then we did not have the inclusion and acceptance of the LGBQ community, as we would today and that we have advanced in our language when it comes to describing others.

I could talk for days about the memories from my childhood, the best ones, barely mediocre.  The point is that whether you grew up in a time before we knew about autism or if you’re currently a parent of an autistic child. good or bad, our brains are always processing the things that go into it and good stimuli lead to good responses.

We’re weird.  I’ll admit it and be the first to raise my hand,  I’ve said on many occasions and I’ve titled my next book, Asperger’s Is My Superpower.  Back when I was in school and, to be honest, through my diagnosis at age 46 and slightly beyond,  I was confused about why I did some of the quirky or idd things I did and the weird things that happened over and over now made more sense.

You have no idea how great that feeling is to finally have things make sense to a man in his mid-late forties.  I imagine that for someone 10 or 12 with their whole life in front of them to at least know they’re high on the spectrum and have opportunities I didn’t have has to be more of a blessing than you’ll ever know.  Just with that in your pocket, you have an advantage over me.  You know now why you do the quirky things that make you, you.  It took me 46 years.

I didn’t know until I was 46 and by then I had become pretty much brainwashed that I was a weird loser that would never amount to anything.  It took a while to knock most of it away, but I still have my days where I believe it.  I seriously do.  Over 100 articles in 30 different magazine titles and a dozen newspapers plus scores of websites including Good Men Project where I write a weekly column and I feel like a loser.  I remember the day I wish my name was in one of them.  How viciously and tight that depression takes over.

Your Aspie child may not have certain memories of events you think are important but he or she doesn’t have control over which memories ultimately stay and which ones go.  As I said, I know I had a good childhood, but the memories I have are bad.  I still love my mom (my dad passed away) and I know that she’s always loved me and wanted the best for me.  I now know what she means by not living up to my potential and at 52 I finally have things figured out.

I think.

Want to keep up with what’s going on at Not Weird Just Autistic?  Enter your email in the upper right-hand corner where it says, “Get new posts by email” and you’ll be one of the first to get the fresh dirt on all this good stuff.

An Asperger’s Guide To Dating Neurotypicals is out and hit #23 on the Amazon Hot New Dating Releases Chart.  You can find it on Amazon and Kindle or get an autographed copy for the same price at the J.R. Reed Author website.

Before I go, I belong to a closed Facebook group, Aspergers Life Support, run by some terrific people.  There’s a link on the right or you can click on the words in purple.  If you have Aspergers or are a loving NT of an Aspie, I definitely suggest asking to join the group.  They’re great people and have helped me on many occasions.

 

What is 1 in 59, Really?

What is 1 in 59, Really?

If you’re a part of the autism community, I’m sure you heard last week’s update by the Centers for Disease Control (CDC). that in the United States, autism is now diagnosed every 1 in 59 children.  That’s up fifteen percent in two years and two hundred-fifty percent in twelve years.

(FYI, if you’re reading this and you’re not part of the autism community, God bless you for reading my autism ramblings.)

Those percentage numbers are based on the CDC numbers from the same years in comparison and it’s scary to know that the area I specialize in, high school age and above, are aging out of school faster than we can help them transition to the life that the majority of those on the upper end of the spectrum only dream of.

Reports on autism subjects can vary with their numbers or percentages, but they’re often not too far off base.  We can safely say that more than half of high functioning autistics will get stuck living at home, with a relative or even out on the streets.  Some surveys put the percentages in the mid-sixties, with others going all the way up to the low-eighties.  Either way, it’s not a great situation.

This will sound like I’m soapboxing,  but I’m really not.  I’m simply stating facts.  With the official number dropping from 1 in 68 to 1 in 59, that means the blog post I wrote just weeks ago about how fifty thousand new high functioning autistics are ready to enter college or the workforce every year, is now irrelevant.  The numbers just went up.

As numbers in my demographic go up, it’s because kids are transitioning and becoming adults.  Some call these rising numbers an epidemic.  Some are wrong.  It can’t be an epidemic, because an epidemic implies a disease and autism is NOT a disease.  We are not, “sick.”  I say, “We,” because yeah, I’m on the spectrum.  So what?  Is it really that big a deal?

ASIDE–when it comes to meeting women, it is a big deal.  Most have no interest in someone with Asperger’s and a service dog.  And a purple goatee.  It’s not the goatee, so don’t even go there.

The harsh, sad truth is that, yeah, it can be a big deal.  Especially when you consider where you live and how bigoted your ‘hood is.  Most people don’t know Asperger’s from. uh, something else that sounds like Asperger’s. 

Do you want to know how bad the lack of knowledge on autism is?  I recently had a neighbor tell me that we had someone moving in around the corner, “Who is like you are.”

“Uh, white?”  I asked with disbelief, knowing how bad this was going to end up.

“No,” they said.  “You know.  It’s what you have.  Kind of like being retarded.” 

“Kind of like retarded?” I repeated over and over in my brain, trying to not publically flip a gasket.  

Then I took a deep breath, poorly feigned a smile and asked, “You mean, Asperger’s?”

“Yea that’s it,” they screamed as their spouse laughed their ___ off at what was just said.

“Um….,” I stammered as I tried to find as pleasant a way to put this as possible,  “Yeah.  So I have Asperger’s, and even after my stroke, my IQ is still in the top 2% of North Americans.  People with Asperger’s are NOT, developmentally disabled.  We haven’t used retarded for a couple decades now.”

Picking themself up off the floor, the spouse offered to grab some WD-40, to pull the foot out.

The point to that story, and yes there was a point, is this.  People have no friggin clue what an autistic person is, or is like, or what we can be.  Those of us in the early years of Gen X (Some polls put 1965 as a Baby Boomer and others in Gen X–I prefer Gen X), remember Dustin Hoffman as The Rain Man.  Yes, he was autistic, but a very low functioning one.  The character was mainly a savant, with a thing for quickly calculating complex equations in his noggin and watching Wappner.  He is NOT the ideal reference to who we are.  Nor, for that matter, is SheldonCooper from The Big Bang Theory, though we’re definitely more Sheldon than Rain Man.

People younger than us, really have little clue, in general, as to who we are.  And who we will be in bigger numbers, because, you know, 1 in 59. 

You’re probably asking yourself, “If this isn’t a disease, why is he so lit up about 1 in 59?”  That’s a fair question.

The lions share of money designated for autism be the federal government or passed out by major charities, favors the kids.  I’m all in favor of controlling the autism rather than letting the autism control us and if that means, starting young then let’s get to work!

The bottom line is that more money needs to be spent and more attention given to those in about eleventh or twelfth grade and above.  Because as 1 in 68 became 1 in 59, Fifty thousand new adults on the spectrum turning eighteen each year becomes a hundred thousand over time.  And what about the ones we missed when they were eighteen?  or twenty-one?  or thirty?  Or, like me, forty-six?

That’s a lot of work to do without a whole lot of funding to help and not a lot of advocates working with adults.  Please, help me spread the word that we should be accepted, welcomed and appreciated for what we bring to the table, just as we would do the same for you–even if we have a weird way of showing it.

I don’t know about you, but I don’t want to see any high functioning adults being held back in any way.  We’re different and different isn’t bad.  We think in a different manner than our neurotypical counterparts, we’re socially awkward where they can talk us out of any situation while we sit back and plan things.  We really do make a great pairing.  It’s neurodiversity at its best!

Neurotypicals (NT), we have skills you can use and you have skills we can use.  Our joining together and putting our brains together is called neurodivergence.  It has to happen, and do you know why?  1 in 59.  We can do amazing things if we work together! 

To put it bluntly, if those on the spectrum can’t learn and try to be somewhat accepting of their neurotypical peers, and NT’s, stop calling us weird and let us teach you what we have to offer, and come in with an open mind.  

So what can we do about the 1 in 59 figure and making sure it doesn’t go lower?  I have no clue because I’m not a doctor or a researcher.  I’m an Adult Asperger’s Advocate who is an Aspie himself. 

My job is to keep writing, speaking and doing what I can to help the high functioning adult, integrate and fit into society as best they can, while teaching society at large who we are, what we bring to the table and how accepting us into the workplace and your peer groups will benefit us all in the long run. 

And, for the record, that does NOT mean, try to make the autistic person automatically fit the NT mold.  Merging the two communities is a fifty-fifty deal, so the NT side is going to have to give a little as well.  Some people are going to have to open their minds a bit more.

I could ramble on and on for quite a while–maybe it already seems as if I have.  The bottom line is to realize that we are not sick and do not need to be cured.  We also need to be aware of how much the adult community needs other advocates to speak out for those who either can’t, won’t or don’t know how.

1 in 59 is absolutely a scary number, but the one I’m mostly interested in is inching its way towards a hundred thousand per year.  That’s the point where the rubber hits the road and where it all gets really real.

How many people are committed to helping the adults, both young and not so young, in getting to live a life they can be happy with and one where they can live on their own, have a job and somehow be a part of society wherether through a board, club, team, or whatever they’re into that NT’s could take an interest in.

Let’s hear from you in the comments section. Are you committed to helping adults?  Are you already helping? If yes, how so.  Let us know.

My first book, An Asperger’s Guide to Dating Neurotypicals, is out on Amazon, Kindle and on the JR Reed, Author website.

 

 

 

 

 

 

Before I go, I belong to a closed Facebook group, Aspergers Life Supportrun by some terrific people.  There’s a link on the right or you can click on the words in purple.  If you have Aspergers or are a loving NT of an Aspie, I definitely suggest asking to join the group.  They’re great people and have helped me on many occasions.

Enjoy this short video, and remember, we’re quirky people, so celebrate the quirk!

 

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