Origin Story

So a day after posting my last article as a contribution to the #TakeTheMaskOff campaign, one particular thing occurred to me. My origin story is one I haven’t told. However, educating people and giving them a chance to understand autism through one’s lens requires the credibility of telling them where you started. It helps to shape and identify the journey that you are attempting to communicate.

I could try to go back and recall every time in public school that I was singled out because I was acting “weird”, “odd”, or “quirky”. Whether I was being called down for something by a teacher or receiving weird looks and rejection from peers, there is just too much to try to account for accurately.

So I’ll fast-forward to three years ago. We had friends over one evening. After what was apparently received as a pointed exchange between myself and one of them, in a later conversation with my wife, she commented that she thought I might be autistic. She’s been teaching for awhile. Teachers, when they have multiple students with certain conditions in their classes, can begin to identify people with those conditions.

So after my wife told me about this, I did some reading, and I thought “that sure sounds like me”. However, the idea quickly slipped off my radar.

Fast-forward another year…

The job I was working at the time was taking a bit of a stress on me. It was the second job in a row where the company I worked for hired out of their area or region for the first time. I was trying to do my best to get along and fit in, all while trying to do the job I was hired to do. On one particular day, I truly don’t remember what went on that day (shows you how important it was), but I truly thought I had a mental breakdown that day. I found myself in the grocery store just muttering to myself. I couldn’t process what my inner voice was saying to me.

While I was better the next day, I was still worried about what had happened. The only thing I knew to do was to try and get in to see a therapist. Thanks to living in the middle of nowhere, it took an entire MONTH for that to happen.

A month later, and I have a clear head when I go see this therapist. He was fairly quick to identify me as autistic, of which he reaffirmed several times after. It turns out that day I thought I had a breakdown, I actually had a bit of a meltdown.

Having a meltdown was, and still is, unfamiliar territory for me. Whether stated, or just perception of being implied, I always thought I had to keep things like that to myself. Sometimes I’ve been able to deal with things. Other times, it’s been enough for me to just shutdown. So for something to effect me severe enough to have a meltdown is pretty bad.

You see, this is what masking can do to someone who is autistic. Yes, everyone does do some masking. But when an autistic person masks, they are being the complete opposite of their being. It taxes us sometimes so much that we are unable to compensate.

Masking causes health concerns…

That will dovetail in to the week three topic. Please, check the #TakeTheMaskOff hashtag on social media. Lots of autistic voices speaking up during this time.

NOISE!!!

Every autistic person has at least one sense that can get overstimulated. They don’t all realize it, but that is one of the major hallmarks of the neuro type.

When I say overstimulated, I’m talking about too much information. Remember Johnny 5 from the movie Short Circuit?

Whenever an autistic person gets overstimulated, we need the opposite. We need less input. Frankly, the copious amounts of input we are getting are causing our own brain to short circuit. The reactions you see from us are the response of not being able to process the input. We just want it to stop.

These meltdowns can show up easier at times whenever we are already stressed about something. If there is no way to control the input, there is no way to control the meltdown.

(Once out of childhood, autistic people can also have gained a control on the emotional outbursts that make up the meltdown. So in cases like that, you will see an autistic person shut down from any interaction.)

It took awhile for me to understand where my overstimulation can happen, but now I do. It’s from noise. Not just any noise. Not just any loud noise.

Sometimes it is from a noise that is overly loud compared to everything else. When a noise like this happens not just once, but multiple times, it causes physical stress. A perfect example is a college football game I attended earlier this year. The PA system was turned up so loud that it was likely too loud for the far end of the stadium.

What sends me in the direction of shutdown or meltdown though is multiple sounds, all at the same volume level. I had this happen to me most recently at a restaurant in Denver. The noise of everyone in the restaurant talking was the same volume as the music was at the same volume as another source. What saved me from losing it that evening was focusing on the TV up ahead of me that had closed caption running. Forcing my attention on that closed caption kept me from a poor reaction that night (though I did still end up overly stressed at the end of the night).

All of this said, please be aware of anyone around you that may be getting overstimulated, whether by noise or some other means. It is likely they are not being difficult with you and the situation on purpose!When

I’m Weird?

(I posted this to a limited audience before, but wanted to repost this at the behest of my efforts to be open about Autism in hopes others will learn more and assume less.)

I’ve been called weird and odd in my life. They were just labels I accepted early on, because I couldn’t even explain the way I was in a manner that made sense with the rest of the world happening around me. No one could truly lay a claim to understanding me. I was the eccentric friend, brother, son, uncle, husband… At least some people liked me and loved me anyway, right?

I left high school early, only to remove myself from college before getting done. Once I got done with college, I swore I would never go back, only to go back twice over (to this point). My worst class was always math, but math has always been one of my strongest abilities outside of school.

I’ve always had people that made assumptions about things I’ve said or my specific behavior in any situation. Always had trouble with it in school. Thought I had gotten away from it outside of school, but haven’t escaped it when I’ve tried to make professional leaps to better myself and my family. There are grown adults spreading rumors about me just in the past two years because they never took the opportunity to figure out who I was and how everything worked with me.

There was one day that my wife and I were visiting with some friends, and I apparently cut one of them off with a correction in a mean-spirited manner. My wife asked me later what in the world I was thinking doing that. However, I couldn’t recall that feeling ever being present at the time that occurred. That friend, who is also an educator, later told my wife the more she thought about it, she thought I might be Autistic.

I did what I always do and read everything I could find on the subject. I could see how that would be the case that I would be Autistic, but didn’t do anything further with that information at the time. Being parents of a toddler trumped a lot of things at the time, including this.  But those two would dovetail together after we began to suspect that our toddler might also be Autistic.

At a later date, I had a really bad day at work. It felt like I was having a bit of a breakdown, so I sought out a psychologist. In one visit, that psychologist had identified me as Autistic. (To be fair, he said Asperger’s Syndrome, but the current diagnosis standard has everything rolled under the same umbrella as Autism Spectrum Disorder.) So my breakdown that led me to the psychologist could more accurately be described as a meltdown.

In the last 18 months, it’s been tough to walk around quiet about it. Some days, I’m really spent because certain things just violate the sensibilities I have that sometimes only make sense to myself. There have been things that seem to be new issues for me when the truth is I am only just now understanding things that have caused me trouble my entire life.

It’s been an interesting ride at home not only re-learning about me, but also learning about my son in an additional light finding out he is Autistic as well. I’ve also selectively told people I thought would be open-minded.

I share my story now for a few reasons. One, it really is tiring not to share with those that know me best out of everyone. I’ve always been an open book for people, and that still hasn’t changed. Two, the battle amongst the growing Autistic community to dispel the stigma of being Autistic requires education and understanding of others about the troubles gone through to persist in a world not designed for you. I like to make bold moves, so I decided I wanted to jump from one at a time to many at a time.

A little about Autism:

Autism Spectrum Disorder is a neurotype that is legally classified as a disorder in the United States, as well as many other countries. Diagnoses have spiked in the past decade because the knowledge of what Autism is and isn’t has only just started hitting its stride. Most adults diagnosed as such probably should have been diagnosed as children. There is still a lot being learned about Autism.

The one confirmation the medical community has made about how a person ends up with Autism is that there is a heavy genetic causality.

Autism manifests itself different in every individual identified as Autistic. Because it can cause a severe effect on development, some Autistics will require assistance the duration of their life. Others may need no assistance because they’ve learned ways to “fit in” to a level where most people would never know how different they really are.

There are some general areas in which Autistics process differently than everyone else.

  1. Executive Function: This is the ability to operate every day, doing normal tasks that anyone has to do. This can be a minor or a major issue. For me personally, I operate nominally as long as I have things hammered into a routine. The moment that routine has to change is when my world can get turned upside down, even on the tiniest of things. This is why I like project management. I am a planner!
  2. Processing of emotions or emotional information: The stereotype is that Autistics have no emotions. This is untrue. They just process differently. If you allow me to be a fly on the wall, I will have the entire room read in no time flat. However, if you insist I interact and be involved with anyone, it can take me hours to days to process their emotions and what they said. This makes me seem uncaring at the time, and “late to the party” when I revisit something later.  Even just a little bit of distance allows me to be more efficient.
  3. Sensory Processing: This is something that manifests itself differently for every Autistic person out there. This is something I am even still learning more just about myself. Sound, smell, touch, sight, taste… All these things have the possibility of being hyper-enhanced. I often have issues with sounds that are needlessly loud. They create physical stress reactions. I can function through them, but in the case of attending a college football game where the loudness of the experience (not including the noise produced by the fans in attendance) was indiscriminate, it took me about 3 weeks to recover.
  4. Honesty: The saying goes that honesty is the best policy. But that is never held to be true always. Some people will lie, or withhold truth, to spare feelings. Others will do it to avoid consequences. There are many reasons people will lie. The way Autistic people are wired, they tell the truth…every time…practically. For most Autistic people, they would be bad liars. Manipulative ulterior motives are rarely ever existent for an Autistic who is telling the truth about something. Some people have suggested this is tied back into the emotional processing issues.
  5. Meltdowns: Over-stimulation in any area can cause meltdowns. Meltdowns are basically when the brain short-circuits on you. Meltdowns can be loud and messy, especially with, but not exclusive to, younger kids. They can also be very quiet, where someone just shuts down and doesn’t participate in the world for a little bit. Meltdowns go away at some point after the removal of the over-stimulation.

Goals for Autistic people to self-regulate often include exercise, diet adjustments, yoga, and meditation. Goals for “normal” people to be inclusive of Autistics include having an open mind and allowing time (in multiple ways) for whatever the relationship is supposed to be to form, as well as always communicating in the most direct way possible (we don’t normally understand innuendo).

In spite of these differences Autistics have with “normal” people, we often learn things faster, are very loyal (sometimes to a fault), and are already extremely hard workers just trying to keep on par with others in a world not designed for us.

Remember, Autism is a little bit different from person to person. What I would share with you that specifically applies to me may not work in the same way for anyone else. That being said, I am always happy to answer anything I can.