Monday, April 10, 2017
An Aspie's Dream Reran
I want everyone to know that, for the most part, I am happy. It is my dream that people learn this. I may have some challenges, but I am not defective. I don't deserve or need your pity and am happy being me.
There are times when the world tries to get me to fit in, and sometimes I try, but there are other times when a social situation may be too much for me. I have had situations in the past where I have been called weird or odd for not trying to fit in. It is my dream that the world begins to not only know about us on the autism spectrum, but begins to understand us.
We have a lot to learn from each other. I look at, sometimes completely perplexed, how two random people can have a random conversation. I know others look at me, completely perplexed, when I get excited about a random fact that I recall about auto racing or when I have the ability to learn some new obscure facts. It is my dream that the world comes to realize that socializing can be difficult the same way it would be for you to recall minute details from the 1992 Indianapolis 500. We are the same, but different.
It is my dream that I never get apologized to again. This can only come from understanding. Being on the spectrum isn't something to look down upon! Yes, it has its challenges, but it has its blessings. Each person is unique and let's cherish the uniqueness and not look down upon it. To be apologized is to tell me, or parents of a person on the spectrum, that I am defective and something is really wrong with me. In my mind an apology like this is reserved for something really horrible and I don't see it that way and I hope, and dream that, eventually, all will see this.
I dream what everyone else dreams about. I want to have a full, productive life. I want a family, a career, and the ability to live my life to the fullest. Some people seem to think that an autism label is the end and that to dream such things is a waste of time. No dream and no person is a waste of time. Yes, we may need to work harder at some things, but if we're not given a chance then how can we succeed? There is so much potential in a mind on the spectrum, but if not given the chance how can one dream of the things that I dream about?
Finally, my biggest dream is the day where the word autism doesn't draw a repulsive reaction for those who aren't affected by it. Autism has to be one of the most misunderstood conditions, but understanding is coming. I haven't had to debate someone on what autism is for quite sometime and when I say Asberger people don't think of a food item or Olympic venue (sad, but true!). Everything in this world started as a dream, and my dream was already started by countless thousands of people before me and I hope I can do my part in fulfilling it. I know I am not alone in my dream and all of us can do some part in educating some one, whether it is a school, politicians, or a random person in a grocery store. I feel the world is listening and is open to learning about us. In all reality there isn't that much that separates us; we're all people, we all have dreams, and for us on the spectrum we just have different traits. We have feelings, we can be scared, and most of all we just want to be understood. This is my dream.
Wednesday, February 8, 2017
Discovering Courage and What Inspire Me
Last week I had my 850th
presentation for Easterseals Midwest in Troy, Missouri and I thought I had seen
it all and done it all but it wasn’t until after the presentation that I was
wrong about seeing it all and through it I found true inspiration.
Inspiration is a tricky thing to
define and I’ve been asked what inspires me many times to which I usually give
an answer that goes nowhere. At the end of my presentation, however, a young gentleman
came up to me and he bought one of my books and left. A few minutes went by and
he came back and that’s when it happened.
In my life the hardest thing to do
is to talk about my difficulties. Sure, I can do it in a presentation but out
in public off the stage I can’t do it but this gentleman came up to me,
composed, and started talking about his difficulties in life and in particular
the difficulties with processing delays and what he can do and say about it. I
tensed up at this point because I knew my answer had a lot of weight on it. It’s
easy to stand up on a stage or in front of a room for me but when a direct
question like this is asked I know the great level of courage it took to ask it
and I know my answer will be remembered for a long time.
My answer began with the fact
autism awareness is increasing. I mentioned that even just a decade ago few
would’ve even had the foggiest notion about what advocating about a processing
delay would ever mean, but it just so happened two days prior in Marceline,
Missouri a fifth grader asked a rather articulate question with, “What does it
mean if a person has a processing delay and what can I do to help someone that
has it?” In telling this story to the gentleman that was now in front of me I
knew I had to expand on this and give him the power and that’s when his true
courage and the power of the moment hit me.
I was about to cry. I’ve thought I’ve
been courageous in my journey and many will attest to that, but this man in
front of me asking such a personal question and asking it in a way in a sense
of shame is the foundation for changing this world! And I told him this by
saying, “One thing you can do is to open up if you need more time. It’s okay!
Will everyone give you the time you need? No, and that’s okay because many will
and if someone asks you why you need it and if you can keep the courage you
have right now you, yourself, are the autism ambassador and you can change the
world!”
That answer… I didn’t really know
where it came from but outside the conversation bubble of him and myself all
were in tears and this reinforced my belief that it is that type of courage
that we all need. I think back to a few years after my diagnosis in the 2000’s
when I had a chance to meet Temple Grandin and I said something short of five
words. I was incapable of talking about my difficulties because I was too
afraid of them. Could I have said anything about challenges? Most certainly not
and that’s why I can now answer the question as to what inspires me. It wasn’t
some major celebrity, it isn’t a gigantic entity, but rather one person at a
small presentation in Troy, Missouri that stood up, took a leap and spoke up.
Wednesday, January 18, 2017
Tuesday, January 10, 2017
Living in the "What If" World
I spend a lot of time thinking; too much probably. It’s
something I can’t turn off and the thoughts sometimes are extremely random.
Being able to think in video makes it all the more difficult.
But
shouldn’t being able to see in video picture a good thing? Ha! It would be if
it could be switched on and off, but it can’t and it is very tiresome.
Everywhere I go I’m playing out situations. Every flight I’m on I’m thinking
about what will happen if the left wing hits the ground, the right wing, or if
an engine stalls. I play out potential for survival, the amount of pain I might
feel, and anything in between that could happen. It’s a flood of thoughts. Yes,
I’m sure those that are afraid to fly have similar thoughts as the plane starts
its journey down the runway, but I’m not afraid to fly.
If I walk
into a store I subconsciously note where the exits are in case of a fireman or
gunman in the store. The thoughts start to the extreme and work backwards.
Consider this a sort of self predicting mechanism. If I can think of every
possibility I will already know my contingency plan.
Having a
plan for everything sounds great too, doesn’t it. Again, I say “Ha!” as there
is no way one can prepare for everything. Also, my mind puts so many resources
into thinking about what lies ahead that often times I miss the now. Once I
miss the now I have to consider what I missed and then I have to fill in some
blanks, and there could be many blanks, and I must consider each blank and by
the time all is said and done it’s one week later.
During the
2004 Summer Olympics I asked my dad, during dinner, “What would happen if
someone attacked the marathon leader? Would they give him a medal? Would the
race be stopped? Could it happen? What would happen to the attacker?” I have no
idea how my dad has put up with these lines of questions because I’ve done this
my entire life.
After
dinner, while watching the marathon, my “what if” scenario became a reality. A
defrocked Irish priest, who in 2003 disrupted the F1 race at Silverstone by
getting onto the track and getting in the cars’ way, broke out of the crowd and
tackled the marathon leader, Vanderlei
de Lima of Brazil. Shaken and shocked the runner forged on afterwards in an
event that cost him nearly 20 seconds. I’m not sure about you, but if someone
jumped out of nowhere and tackled me I’d want to find a corner to crawl into
and have a crying session. Cry he did not though and he went on to finish 3rd.
He may have won gold though, but the organizers did not award him that. They
did, in something in my “what if” thinking didn’t realize they could do, award
him the Pierre de Coubertin Medal for
sportsmanship.
My dad had
adamantly told me during that 2004 dinner that something like that could never
happen, but it did. My mind can’t turn this off, and in all aspects of like I
typically like to be right, but not when my mind calculates these negative
situations.
These
situations can be big, or small. Every conversation I have gets played out
during the conversation. Think about the fear I have as I always start with the
extreme. The extreme would be that I am going to make them bad and I’m going to
be punched in the face, or worse.
I wonder if
other people with an autism spectrum disorder experience this. I think this
could be mistaken as an anxiety disorder because it does create anxiety, but
only from what could be. Rarely am I afraid of what is, but because I am so bad
at knowing what the current social situations are I must prepare and predict
for myself.
I am wrong
more often than I’m right because most of the time, well, nearly all of the
time my mind doesn’t get to the normal outcome that is most often the case.
Anytime I hear “Breaking News” on the television I instantly play out what it
could be from the time I hear those two frightening words to when they actually
say what it is. I will think “Nuclear war? Hoover Dam collapsed? Terrorist
attack? Terrorist attack in Omaha? Duluth? New York? Fiji? Is a comet about to
hit the Earth? Asteroid? Was there an earthquake? Tsunami? Zombies? Did the
markets collapse?” I remind you I have all these flashes of thoughts in just a
split second. I’m often disappointed I went through all the trouble, but often
relieved when I find out that their concept of breaking news is a celebrity in
trouble with the law.
I hope I
have conveyed just how tiresome it is living in the world of “what if…” There
is no off switch and I can see, like a movie, all the events that I said when I
hear breaking news. Sadly though, unlike a scary movie, I can’t simply close my
eyes and make it go away. In my case, when I close my eyes, I can actually see
the “what if…” even clearer. Let me say this again, thank goodness I’m wrong
most the time because if I were right, those comets, or zombies would’ve wreaked
havoc on us more times than anyone would care to think about.
If my mind
had a movie preview it’d be this, “In a world where tsunami surfing zombies
carrying live nuclear warheads…” Wow, what if that’s the oddest thing I’ve ever
played out…
Thursday, January 5, 2017
Video link
To build upon yesterday's post I'll invite you to view a video I made with my coworker Ann back in October https://m.facebook.com/story.php?story_fbid=10153770483701507&id=97623166506
Wednesday, January 4, 2017
Where It All Began
Seven
years ago today I awoke with a mission. I wish I could say it was a noble
mission of starting a career as a public speaker, but it wasn’t. My mission was
one of self-preservation because I, quite simply, didn’t want to make a
complete fool in front of 40 police officers at the Saint Louis County Police
Academy because I was about to give my first presentation for Easterseals
Midwest and I had never presented to police officers before and I had no idea
what I could say that they would get.
My
presentation that day was at 1PM and I awoke around 11:30 as back then I had no
direction and no real purpose to get up so it was odd to get up and have
somewhere to be. Was I nervous? Words can’t relay the feeling of dread I had as
I left the house and inched towards the academy. What was I going to say? I had
50 minutes and I had an odd hodge-podge PowerPoint formulated which was, well,
I don’t fully remember it because I only used it that first time and as I
presented it I was cringing on the inside because I knew I was going down in
the most glorious of flames.
It was
bad, or so I thought. There was no fluidity in my words and no real message. I
tried to sound like I knew what I was talking about and while I was sure I
failed when my time was up I was confused because the officers there applauded
and not in the polite way one does at the end of any given presentation but
this was a genuine round of applause as if what I had just done was something
out of the ordinary.
On my
drive home I had many thoughts of how to make it better because I knew my
material I had presented, whilst good, wasn’t what officers in the field needed
to know. I didn’t know that in my audience that day were many high ranking
officers including the then head of the Saint Louis C.I.T. program that would
have me present to this day, and that impressing them was a feat to be proud
of. This didn’t register because I had been so nervous and now I was so focused
on needing to make my presentation more relevant.
E-mails
were sent and I got a coworkers presentation and to this day I’m still using
the same presentation. Much has change despite the PowerPoint remaining mainly
the same (one major change; rate of autism has gone from 1 in 155 to 1 in 68)
as the stories I use have become more complex. Also, after doing a police
ride-along in March of 2010 I got a better understanding of what an officer
faces and I changed my usage of words. Maybe it’s this understanding which has
led to the continual great responses I’ve had and as the years have gone on my
passion has not waned one bit. If anything my dedication to the field of law
enforcement has increased as I’ve received the honor of presenting to three FBI
field offices and last month I received the thrill of my career when I got
invited to a conference that the FBI had.
While
it was like playing in the Super Bowl or World Series last month at that
conference every presentation to law enforcement at any level is important and
each presentation can have ramifications that you and I will never know what
the impact may be. If it were up to me I’d present to every officer possible
because it’s something that can’t be put off or ignored as the rates of autism
keep going up. It isn’t a matter of if an officer is going to have an encounter
on the job with a person with autism but when. Statistics show that the vast
majority will be because the person on the spectrum will be a victim, but if an
officer isn’t aware of the traits, or the potential taking of things literally,
the way the encounter goes may not be the best, or in certain situations the
end result may be a story that ends up on the news in a tragic manner. I’m not
saying my presentation or any other person’s presentation about autism may
prevent a perfect storm from forming it is something that needs to happen.
The
overall reception I’ve had from officers has been nonstop since the first one
and I don’t take any police presentation for granted. I was oblivious seven
years ago on what I was getting myself into and had no idea how much rides on
being on my game each and every time. Actually, I never thought that officers
needed training in the first place, but seven years later I now know the
need for trainings throughout America and the world is growing faster and
faster and I will forever be thankful for how aggressive the Saint Louis area
has been at getting their officers trained. I can only hope that seven years
from now we have made more progress than we can imagine because, well, we
already have in the past seven.
Tuesday, January 3, 2017
The Changing of the Year
Like many across America on December 31st I was
watching the coverage from Times Square and the dropping of the ball and as
with each year previous I tried to stave off emotions and as with each year
prior I failed.
I watch
the millions of revelers in the streets on television and I am in an awe of
sorts as there’s so much excitement and passion which I don’t understand. The
last thing I try to do in life is acknowledge time. Time represents change and
change is bad therefore New Year’s Eve is the ultimate day for acknowledging
the passage of time.
For many
2016 was a year to forget but the thing for me is that it will NEVER be 2016
again the same way it will never be 2015, 14, or 1999 again. Things that have a
certain finality make me cringe and each day, each moment is one that will
never happen again and this is hard for me to accept. If things could just stay
the same in this moment I wouldn’t have to process, things wouldn’t change, and
within that comes safety. Of course, what I just said, is outright impossible but
that’s the way my brain wants it.
This
sadness with time is where my associative memory system is based out of. If I
remember certain numbers, words, and if I have the right physical items around
me then, for me, it’s like everything is right now and change never happened.
The
previous paragraph is much deeper than I think you can understand and is deeper
than any words I could write could give justice. This is also why it may
appear, at least in me because (cue the first time in 2017 I say this) if you’ve
met one person with autism you’ve only met one person with autism, I am unemotional
when I should be and overly emotional in times when others wouldn’t think I
should be. I mean, how many people breakdown in tears because of a changing in
the numerical year? I tried to avoid it several nights ago and as the countdown
began at 60 seconds and as the partiers in the streets screamed in anticipation
and as the confetti began ahead of midnight and as the final countdown began
from 10 to 9 to 8 to 7 to 6 to 5 to 4 to 3 to 2 to 1 and to the fireworks I was
streaming the tears out. 2016 was over and as the millions in Times Square
celebrated I sat bewildered wondering how people celebrate the passage of time.
It is something I’ll never understand but as I said in yesterday’s post I am
embracing this year and I am embracing this year and I hope this year is
fantastic, but whatever may come I know come December 31, 2017 I will once
again be staring at a television screen wondering how so many people can be so
excited to celebrate the passage of time and another year.
Monday, January 2, 2017
2017... The Race Continues
2016 proved to be one of the most challenging years I’ve
had. It’s odd that the pinnacle moment of my year which was getting the honor
and privilege of flagging practice for the Indianapolis 500 was the same moment
that my year started to go downhill as that was the day I first felt symptoms
of the eventual pneumonia and pleurisy that I’d come down with. From that
moment it was one thing after another and my will has a person waffled. Sure, I
completed my travel book (I can’t wait until you get the honor of reading the
finished product!) but the constant elements in my life and health and close
calls I had eroded my will. However, 2017 is upon us and with it a new vigor
for the mission.
This is
my eighth year in the role I have as Autism Ambassador for Easterseals Midwest
and as the title of this post states it is truly a race. If you know my story
you know that I wanted to be a race car driver but that never came to be. That’s
more than okay because the race that you, I, and the rest of the world is in is
the race for autism awareness and more importantly autism spectrum
understanding. Each year I have said that we have made great headway in the
awareness aspect but still we are far behind where we need to be on the
understanding aspect. This can’t stand! We are in a race. All of us.
Why do
I say race? Each day, somewhere across America, and the world, will be a case
of misunderstanding. It may lead to bullying, it may lead to a confrontation,
and with a little understanding these cases may not happen or if they were to
still the consequences may not be as severe as they may have been. Tomorrow the
same thing will happen, and the day thereafter all the way to the end of the
year. I don’t want to say there’s a true enemy of autism but if you were to
press me for one I would say time is the enemy. With all things autism related
sooner equals better and the sooner parents get the diagnosis for their children
or employers get educated on what the autism spectrum entails and when teachers
are taught that a student with Asperger’s isn’t being belligerent when
constantly asking for a logical reason when asking, “why?” we will be inching
closer to defeating the enemy of time.
This
isn’t a race that we can lift of the proverbial throttle. We must forge onward
and we won’t always be able to travel at Mach 2 to the goal of having everyone
in the world being fully aware and able to understand the autism spectrum, but
we must strive for it. I believe and know that there is so much human potential
in those on the autism spectrum and to have that potential squandered due to misunderstandings
is something I hope will slowly subside.
It’s
2017 and I am embracing this year and I hope this is the year we make our
greatest leap forward yet. We are in this together and I wish the best in your endeavors
and I will try and continue giving you the best of material possible. Let’s do
this year! Let’s change this world for the better!
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