Expectations (part 1)

The best piece of advice we received in pre-marital counseling was that we’d each have a view on things based on the way we were raised. So, while we may have had some disagreements, misunderstandings, or minor conflicts, we’ve never had what could truly be defined as a fight. We both credit this to that one piece of advice.

Expectations.

We all have them.

We all hate when they aren’t met.

But what happens when you can do nothing about them?

My wife and I had a conversation about this the other night. I really had no idea how much she was struggling with the whole concept of expectations versus reality with our son, who is also autistic.

My wife absolutely loves our son. She has also been able to tell from the beginning that he was not what others might refer to as “normal”. But as he’s gotten older, he has progressed. He’s an awesome kid, but has missed what most people consider important benchmarks.

Several days ago, she mad a wide public acknowledgement on Facebook that our son is autistic, What she didn’t say is how lost she was feeling about the whole situation. She’s having trouble leaving behind expectations for new ones.

(We discussed her view on this being fed by her grandparents that raised her. At the point her grandparents were growing up, if you were unable to meet the benchmarks, you may have ended up institutionalized.)

After her Facebook post, several people exclaimed how she will be a great advocate.

She will be.

For her family.

In the mean time, whether it’s thoughts, prayers, or good energy…send some for her and in her direction. Everyone needs to be propped up by others from time to time.

 

Hyper-Awareness

Another entry today. Another chance to help educate about autism. Another chance to explain a weird eccentricity about myself even though it is totally normal to me.

Many autistic people are hyper-aware about certain details. There is a focus. They are drawn to the little tidbits. And now, I feel like I am completing an assignment in a language arts class, because I feel I described this in the very first sentence.

So. Reset.

Many autistic people are hyper-aware about things. They will often be things that a neurotypical person might not ever think twice about.

So. How does this apply to me? I can’t STAND those stupid Snapchat, Instagram, or Facebook filters that mess with the structure of your face. It makes my skin crawl. (Don’t worry, you can keep taking them. I’ll just hide them from my timeline. Nothing personal. Really, it isn’t.)

But wait, Tim. You put one of those stupid filter pictures as the feature picture of this post…

Yes, yes, I did. It was the least cringe-worthy of them I could find. It was better than some hokey graphic that said “HYPER AWARE”!

Now, let me tell you WHY I have such a problem with them.

I identify people by their face. I don’t even remember names that much unless it is someone I am super familiar with. But I never forget a face. My wife can confirm that. I am always saying “oh I know that person” when we watch a TV show. But it’s not A-list stars. It’s the people that have one-off appearances in TV shows, or supporting parts in movies.

I was giving my wife a lesson in what goes on in my head when we were looking at a bunch of old family pictures the other evening. I was pointing out how one person looks like another person because of one specific part of the face or another.

The one thing I told her is that I always start with the eyes. Always.

This whole thing is why I hate these filters. They screw with the eyes first. It’s not that the filters make the eyes different. They make them UNNATURAL! It offends sensibilities I didn’t know I had!

Yes, My Wife Is Right…

I oft am accused of having to “always be right”. If you’re autistic, you will know that is not what I do. That is not even something I have the desire to do. That being said, it makes this even more important to acknowledge a story like this…

My wife is a pretty smart person. She may not always think I acknowledge it, but I do. It’s just more obvious that I’ve acknowledged it when I sit down and take the time to do some writing, like I’m doing at this moment. This is an indirect effect in the case of this story, but I feel it is proper to acknowledge the part she played, even thought she doesn’t know it yet.

Most people that know me really well know that I am usually SUPER CAREFUL with my iPhone. However, I’ve shattered the screen twice in the last 12 months. The second time was just last night. I made a quick call to a place in town I’m aware does screen replacements.

“Not tonight, but we can definitely get it tomorrow.”

After checking if I can bring it during my lunch break, then I’ve got a plan. So we get to today, and I’m looking at a map because a bad wreck is potentially between me and this shop. Well, with Google Maps, if you select where you’re going, you get user submitted reviews. (My wife checks reviews of all sorts of places ALL the time.)

Good reviews, except for phone repair specifically. Well, there is two other locations. Let me check their reviews.

Not any better.

I all of the sudden was not feeling comfortable getting my phone repaired by these shops. Thankfully, there are a lot of screen repair places in town. I find one with solid reviews and call them 10 minutes before my lunch break starts to check and make sure I can get the repair during lunch.

The best part about this is I have no established routine for something like fixing my phone. So, I was not set on doing any one thing. While it is likely I wouldn’t have checked the reviews had I not been on Google maps looking for traffic data, the actual review checking happened thanks to my wife.

She’ll know it as soon as she reads this.

At The Supermarket…

For Autistic people, going to the supermarket can be a sensory nightmare. Different temperatures. Different smells. Lots of people. Overly noisy.

I am horrible when there are lots of people around. I’m bad with too much noise. But those are all issues I can explain with other stories. There is one sensory issue that is supermarket specific in my mind.

Different layouts.

Don’t get me wrong. I don’t care. I’m adventuresome. I like figuring things out. But my problem comes when I’ve been looking for that one item. It should be here. Then it should be there. It got moved across the store. It got moved down the aisle. There are less in stock. There are more in stock. This is simple, every day things for people when they visit the supermarket. Normally, I can even solve these issues quickly. Every so often, I am thrown for a loop and get stressed.

The bigger problem is if I go to a different store location than I normally do.

I live in a town that, no matter which location of a supermarket you walk in to, entire sections are some place else. I’m not talking about that I can’t find food. I’m talking about finding a specific subset of food. I’m talking about finding the toy that my kid has talked about for so long. I’m talking about finding windshield wipers for the car. I walk in to “my” supermarket, I can go straight to what I need. If I walk in to a different one, I need time. I need time to find things. I need time to control any stress reactions. I need time to simmer down.

A side bar expansion on this issue: I go to different locations of the same supermarket depending on what I am looking for. I will drive OUT OF THE WAY if there is a specific store I have always picked up something at. It doesn’t matter if another store is closer.

I feel like such a tool trying to explain this sometimes. But it makes sense in my mind.

Empathy & Autism

(Disclaimer: Different Autistic people experience and process in different and unique ways. While I may be talking about a hallmark of Autism, my descriptions and ruminations about and around the topic only have to do with my personal experience. If you know another Autistic person, ask them how this affects them and how they handle these things.)

Have you ever been met with an overwhelming situation that you were unfamiliar with? How long did it take you to process what was going on? How long did it take you to decide how best to react? Did it make you an less uncaring or unfeeling?

It is often said that Autistic people have no empathy or emotions. They can only process the logical side of an experience. That is only partially true. We have emotions. We just process them differently.

It is true. Autistic people tend to process situations according to the logical and rational facts available at any given time. The tangible nature of this information feeds to the need to have all information, which in turn keeps chaos at bay. I can be paralyzed in my reactions and my decision-making if I don’t know what’s going on. In fact, for years before being diagnosed as Autistic, I often would tell people that I just prefer to know all the details up front. I can handle things as long as I know, good or bad.

So, when you get in to emotions, they are irrational, unquantifiable factors that I cannot predict and process…unless I’ve already gone through them myself. For instance, this is how I decide for myself if a TV show has portrayed an Autistic character well. I don’t analyze what’s happening. I can feel it.

So how does this connect with mind-blindness?

Think about what language you speak. It is second-nature for you to speak your native language. You might learn other languages, but you may be translating in your head. Or maybe you haven’t learned that additional language yet. So instead, you are using a translation dictionary. It’s going to take you awhile to process that. It’s going to take you awhile to understand.

This is the same with me and the emotions of a situation. If I am directly involved in an issue with someone, I may not understand until days later why they were reacting the way they did. My first instinct is tangible discovery of the situation.

The funny thing about mind-blindness with me is that it only occurs when I’m directly involved in a situation. If I have the chance to observe full-blind (fly on the wall) or even part-blind (indirect conversation about a situation I’m not personally involved in), I have a chance to read what is going on.

All this to day, I understand emotions and have my own emotions. I am sorry for the possibility of adverse reaction that exists because I often process emotional information secondary. Please know this is the way my mind naturally works.

Getting To Know You

You know that feeling when a new TV show hits the airwaves and the previews enticed you to watch? You make sure and tune in (or set the DVR to record), and you’re hooked. But if not enough of the potential audience is hooked, the show gets cancelled “before its time”.

As an Autistic person, I’ve got obsessions that I’m in-tune with. Before saying “oh no, we’ve all got that, Tim”, I’m talking about obsessions that border on or are perfectly in line with the definitions of being obsessive-compulsive. One of my obsessions is with good story-telling.

You may think that would mean I love to read books. While I do, I have to be careful because I get bouts of what I can only describe as vertigo when I read too much at a time. However, I’ve always been a better aural learner all of my life. So TV shows that use good storytelling can get me hooked in a heartbeat. Yes, I have been disappointed by come early cancellations of some shows.

“Objection! Relevance!”

“Counselor, get to the point.”

“Getting there, your honor.”

In the days before technology, even further back before the days of general modern accouterments, people joined together at the end of the day. Often times, they would join around a fire. Around this fire, they would enjoy the company of others. They would also tell stories. This is how you got to know the true self of others, and appreciate, understand, and enjoy them as a fellow human being.

These days, it’s easier to walk away “after one episode” if the content didn’t sit well with you.

In general, we as human beings need to tell more of our own stories and listen to others’ stories. We need to get to know the person across from us in their truest sense.

Taking this one step further, if you know someone who is Autistic, please don’t give up on them right away. Much like some TV shows, they take awhile to grow on you. They take awhile for you to get hooked. But, they end up being the ones you are invested in the most.

“Are you talking about TV shows or Autistic people?”

Both. But when it comes to the people, they are some of the most genuine people you will ever meet. Their motives are rarely ever self-serving outside of the desire to receive the same treatment as others. They will often return the same investment in to you, as they are able to process it and still stay level.

I’m not even saying this to try and create a positive effect for myself. I have the best wife, an awesome son, some life-long friends, as well as an association with many other good people. Taking the time to learn someone’s story is good. Taking a time to learn an Autistic person’s story is a blessing they don’t often receive. And if you give it more than a “couple of episodes” or just “the first season”, it can and will be a blessing for you as well.

(Any questions about this, or about myself, please feel free to ask.)

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.