What did we
learn in the previous chapter? I hope you learned that whatever emotion is
being felt we be felt to an extreme level and will all but consume the person.
These emotions could be good, or bad, but whatever is will remain unabated.
However, for me, there is one emotion that seems to trump all others and that
is worry.
I’ve heard several misguided experts
proclaim that, “All people on the autism spectrum have no imagination.” While
some might have this, and while I was never good at pretend play unless it was
under my terms using my logic, my imagination is super strong in terms of being
able to visually play out scenarios in my mind. This can be a strength, but
when I was younger this proved to create a lot of issues that those around me
couldn’t understand and I couldn’t vocalize.
The first thing in my life I can
remember worrying about was the weather. There were two instances that might
have influenced this, well, maybe three. The first, and this is what made me
think of three, was this weather radio my dad had. Yes, this before the time of
the Internet and this NOAA weather radio, anytime a watch or warning would be
issued, would blare out this hideous squelchy, screeching sound. I would scream
when it would go off and this may have appeared as a fear of the impending
storm, which was there, but also the noise itself was bothersome for my system.
Now, if we use many of the concepts put forth in my previous books such as
“Film Theory” and “Associative Memory System” this meant that stormy weather
equaled that noise which was bad therefore both storms and that radio were bad.
I don’t know what happened to that radio but I hope it got dropped in a tub of
hydrochloric acid.
The second event was when I was
about five and my dad and mom had just left the house and I believe my grandpa
was watching me and no later than five minutes after they left a massive
lightning bolt struck a tree in the front yard. I can remember this moment as
if were right now as the sound was deafening and the light, oh the light was
blinding. I think in this instance I screamed for an hour afterwards and from
that moment on every storm equaled, in my mind, that experience of severe noise
and light which was, perhaps, one of my first true sensory meltdowns.
Thirdly, about a year after the
lightning strike, a severe storm producing tornadoes was passing through
Indianapolis and the tornado sirens went off (this too was a sensory issue
”first” as well as scaring me because I figured that eerie sound that everyone
could hear would only be used if something was really, really bad) so my dad
and mom rounded the family up and we headed to the basement. As I went from my
room headed to the basement I can remember looking outside and the clouds were
something I have never seen since; it was the greenest sky you could imagine
and yet it was night and the clouds were moving in a straight down fashion. On
top of all that electric lines and transformers were blowing ever half second.
Needless to say it was a scary sight for a six year old to see.
We get to the basement and go into
the deepest room but as soon as we get there the entire family, excluding me,
go out the basement door to watch the storm. I heard the news and I had been
taught that in a tornado one must go to the basement. This doesn’t mean go to
the basement and proceed to go outside! This means hunker down and hope and
pray for the best. However, I was left alone, screaming mind you, and going
through my mind at the age of six on that stormy night, were all the
possibilities that would happen to my family be it a lightning strike, or the
impending tornado. Both of those options could
have happened but my mind could play it out and I could truly see it. Because
of all this I screamed and I screamed and I walked halfway down the hall and
demanded that everyone come inside.
From all of those experiences I
developed a severe fear of all things outside a sunny day. I used to live by a
map The Weather Channel had and that was/is their thunderstorm forecast map.
This map shows the US and where there could be strong thunderstorms the area
will be shaded in orange and the possibility of severe was red and if my
hometown was shaded in red it was all but impossible to get me to go to school?
Why? Several reasons; the first was that schools don’t have basements and the
rules on the television always said go to a basement or a “central room.” There
was an experience I had in kindergarten where a storm was close and the sirens
were going off so we went into the hall which was right by the front door. I
knew this wasn’t safe and from that day I didn’t trust a school with my storm
safety. Secondly, if I was at school, I couldn’t see the radar which back then,
Internet less mind you, the radar was only viewable once every ten minutes
which meant that every ten minutes my imagination ran wild.
If I were at school my mind would
play out situations of how and where the storm would develop and in my mind it
always ended with a catastrophic F-5 tornado coming and ripping up where I was
into oblivion. Was this probable? No, but could it happen? Yes, and this is
where it can be difficult for those around us to understand our worry because
to you it is something that has such a remote possibility of occurring that you
don’t give it a thought, but since feeling an emotion is to feel something to
the unfiltered level this means that not only can I play out the scenario but I
can also feel it in advance.
If storms weren’t bothering me
another issue plagued me from a young age and that was the fear of losing those
around me, specifically my dog Missy. Yes, I feared losing human family members
but that worry was so deep that any thought of that at all was brain shattering
and the only way I can compare that is to imagine what it would be to drop a
piece of china from a ten story high window. But when it came to Missy I would
sit with her and silently cry fearing the day that she was no longer barking in
supreme happiness when I came home. This was when she was just a couple years
old and again, was it probable that her life was going to end anytime soon? No,
but again the possibility was there and since it was there in my mind it was
consuming. My dad would always tell me that my worry was like, “paying interest
on a loan that you haven’t taken out yet” but being so young I didn’t
understand it. Even if I did it wouldn’t have mattered because the fact of the
matter was that she was going to die, someday, and there was nothing I or
anyone else could do about it.
As I grew older my ability to worry
grew with age as I learned more about the world and more about potential life
changing events. With the advent of caller ID I began to fear phone calls
because anytime a number called that I didn’t recognize I always feared the
worst and assumed it was the highway patrol letting me know that someone I knew
had been in a fiery car crash. This worry and fear, when it hits, is instant.
It isn’t, “Oh, here’s a number I don’t recognize. Could it be one of my mom or
dad’s friends? Hmm, probably not. Could it be a store letting someone know a
product came in? A telemarketer? Oh, I don’t know, there are just too many
possibilities.” Again, that’s not how
my brain works. My brain instantly goes, “Okay, who just died.”
I will cover social worries in later
chapters as those deserve their own time, but of course social issues can also
cause worry. And with all these worries, and if I forget to mention this later
on, you’ve got to remember that these worries/fears are more than just a slight
worry for us as they’ll become the only thing that matters. We don’t go from an
alert level of all’s well to all’s hell in a gradual form; no, we go from 0 to
10 instantly and we may be able to feel it, see it, and experience it because,
if we’re a visual thinker, we can see it in advance. And what this means is
that saying, or diminishing our fear by saying, “It’s nothing to worry about”
or, “I understand” will do little to quell the storm of worry that is raging.
Can you do something? Oh yes, but you’re going to have to understand why we are
afraid and try to think logically and visually, but since each person with
autism is unique and since each person’s worry triggers can be anything and
everything there is no one answer I can give in confidence as to make
everything perfectly better instantly.
As I reached my adult years the
primary worry has been the worry that everything “won’t be okay.” This is a
broad term I use and I have constantly, for almost 15 years, asked my dad at
least once a day, “Will everything work out, will everything be okay?” Part of
the genesis of this question was that awful website I read when I was diagnosed
which told me everything was not going to be okay, but from that the worry had
many sides and depths. Will I always have a place to live? Will I be accepted?
If things are difficult will I swim instead of sink? Will I be able to pay my
bills? Again, please remember that these things I just asked are things we all
think and could quite possibly be part of the essence of being human, but for
some these questions are just that. For me they take on a life in my brain like
a movie and I can play out and see all the future expenses and I’ll know the
exact date that I will run out of money. What can’t be calculated, and maybe
this is caused by the worry, is what money will be earned. As good as I am
imagining the end of my world and all that could go wrong I can see what could
go right. You see, Benjamin Franklin had it right when he said, “But in this world nothing can be said to
be certain, except death and taxes.”
There
are other aspects to this that can cause worry for us on the autism spectrum
and they are all around you right now. If you’re in a home listen for a moment
and turn any music or background noise you may have on. Maybe you hear an air
conditioner or heater, or maybe, and I hope you just heard this but the odds
are low, you just heard the house settling. If not, I hope you know the noise
which can very much sound like a footstep on the floor. I’ve heard over a dozen
stories from parents that struggle with this because, and I suffered from this
too, that when that noise is heard I don’t think that it’s the house creaking
but rather I think of some masked robber here to take my things or hurt me.
Again, is this the likely thing it is? No, but it could be and when we are
talking about all the possible outcomes in life it is impossible to get everything
right, isn’t it? But, what I think is one of the underlying causes of this
worry issue, is that processing for us on the autism spectrum can be longer so
I have to be prepared for the worst before it gets here. Maybe this is an
instinctual response that can’t be helped to protect my body in these events.
And then again maybe this is just because I’m just hyper-sensitive to my
surroundings and since whatever is felt is felt to an extreme level therefore
any hesitation, any worry, or anything that is 1% out of the ordinary will
create a response that might be impossible for you to understand, but while it
may be impossible to understand how I can fear a storm that doesn’t exist yet,
or mourn the death of my living dog the fact of the matter is that my worry is
real regardless the current state of realness of whatever it is I am worrying
about and that is what those around me, and others that are around those on the
autism spectrum, must understand.
I have been to funerals many times...in my head. But I am in my 50's now (undiagnosed) and can swap to different thoughts as soon as I know I am heading down that path. I do have to concentrate on the new thought though..
ReplyDeleteMy child developed a fear of growing up at about 5. He doesn't look forward to birthdays and won't acknowledge his real age. Any similar situations?
ReplyDeleteOh yes! Birthdays and New Years were and are awful for me. I cried endlessly when I was six when 1989 turned into 1990 because I realized it would never be a 198X again.
DeleteVery interesting thank you for sharing
ReplyDeletetheirs a few things that lve thought myself