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How can I help?

So yes, I’ve got my own issues. But don’t we all? They’re not the same slate of issues as anyone else I know. They are as unique as a fingerprint or a snowflake. But the question that has always been on my mind is “How can I help?”

Anyone who knows me in person knows I have talked about earning my way to being a licensed professional counselor. Those of us who are autistic can use someone that has walked in similar shoes to understand better what we’re going through. That is going to be a tall order though…yet I still plan to do it.

In the mean time, I want to help by providing education to the non-autistic population that we simply cannot just provide with individual efforts. So, I have started the process of creating a non-profit organization dedicated to telling the stories of people who are autistic. It’s not going to be built overnight, but it is an effort I believe in. It’s an effort that other autistic people have shown support for as well. There is a desire to have a collective voice not just for the autistic population, but by the autistic population as well.

I will post more about this effort as things are accomplished.

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Autism with a side of…

I may be the first to tell you what I am about to tell you. Or maybe not. But it is important to know either way. Autism is a social disability. That means the disability exists because of constructs set out as “normal” within social circles.

However, further disability can and does exist in other forms. This is what is referred to as co-morbid conditions. It is not uncommon for an autistic person to have additional conditions that make up what people typically attribute to autism.

Today, I want to highlight three of these co-morbid conditions that I have, and how they can serve to exacerbate signs of autism.

OCD

First is Obsessive-Compulsive Disorder. In part, NIMH defines OCD with the following information:

  • Having things symmetrical or in a perfect order
  • Repeatedly checking on things, such as repeatedly checking to see if the door is locked or that the oven is off
  • Some individuals with OCD also have a tic disorder. Motor tics are sudden, brief, repetitive movements, such as eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking

Perfect order for an autistic child is often observed as the categorical ordering of objects by shape, color, or size. In adults, this is more subtle and understated. I have certain things that must be certain ways to feed in to my functioning routines. If they are not, then that part of my routine is interrupted. I repeatedly apologize to my wife when we run in to issues effected by this. Most of the time, all I can say is “it’s gotta be this way to work.” I don’t usually have an explainable answer past that, and that aches that I don’t.

I do repeatedly check door locks and light switches in our home. There are two lights I leave on at all times, and all the doors are left locked to the maximum capability. On top of this, you can observe me checking pockets for my phone, wallet, and keys when leaving to go somewhere. 99% of the time, I have these things. I check for them anyway, because I am fearful of that 1% when I don’t have those things.

Stimming, or self-stimulating behavior, is something that happens with autistic people. This is physical movement that helps to calm the individual. It would not be uncommon for some stimming to be classified as a tic. One of my stims that people rarely notice is the flexing of the tendon at the front of my neck on my right hand side. By classic definition, it would also be a tic.

ADHD

Next is Attention Deficit Hyperactivity Disorder. In part, NIMH defines ADHD with the following information:

  • Overlook or miss details, make careless mistakes; Not following through on instructions and starting tasks but quickly lose focus and get easily sidetracked
  • Having problems sustaining attention; Being forgetful in daily activities.
  • Fidget and squirm in their seats
  • Blurt out an answer before a question has been completed, finish other people’s sentences, or speak without waiting for a turn in conversation
  • Have trouble waiting his or her turn

Overlooking details is a big, giant struggle in life because I am so detail oriented. It’s painful when I miss a detail. This internal conflict is so big that I will seem to remember everything, only to miss one thing. I usually remember more than the average person, but the one thing I forget is the one thing everybody else is looking for me to remember. Being a perfectionist, this is probably the biggest thing I hate about how I handle myself.

Problems with forgetfulness or with sustaining attention loop back around in to the autistic difficulty with executive function. I can tell you ALL DAY what needs to be done where, for how long, and with what resources. When you expect me to be doing these things though, it is a struggle to follow through. The bad part where “normal” society comes in to play, I never have what would be considered a good reason for missing things.

Talking over people is a real struggle for me, both from a technical and social aspect. First, I realize that there is chaos found in talking over people. Second is something that always got me in trouble as a kid, and still does now sometimes. I’ve gotten accused of not listening and considering what a person has to say when I start talking before they’ve finished their point. It is a social faux pas. I get that. But very rarely have I ever changed my mind based on the few additional words due to be said had I not interrupted.

Ok, I realize I’m going off the rails in that last paragraph. What it boils down to is that I get accused of never taking the other person in to consideration most every time, no matter how I handle myself. The ADHD tendencies do not help matters. But what does matter is there is a hypocrisy. It may not be intentional, but it is there.

Anxiety

Next is Generalized Anxiety Disorder. In part, NIMH defines GAD with the following information:

  • Restlessness or feeling wound-up or on edge
  • Difficulty concentrating or having their minds go blank
  • Irritability
  • Muscle tension
  • Difficulty controlling the worry

I’ll be the first to say that anxiety is no joke. From what I know now, I very well had minor anxiety issues all the while growing up. It’s only been in the last month or two that I have really started to struggle with this. The thing about anxiety is that the symptoms can and will grow from societal issues of any type…ESPECIALLY if it already exists. Physically, anxiety is draining.

(My usual disclaimer: Most things I talk about in relation to Autism can be applied to other Autistic people out there. Please understand that anything past the generalizations describe only my experiences and may not describe the specific experiences of other Autistic people. As always, if you have any questions about what you’ve read, feel free to contact me.)

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Are you normal?

Just what is normal?

I’m borrowing this premise from a prominent and outspoken advocate for the autistic community online. She does good work because she is also autistic, like I am.

 “Imagine if they way you act & think was determined a ‘mental disorder.’ Imagine if people looked upon you with pity and disgust because you don’t conform to their ideas of ‘normal.’ Imagine if people wanted to cure you of being yourself.”

Really. Are you normal? What is normal? Can anything be declared normal in this world? Unfortunately, that answer can only be yes in social connotations. You think you like labels? Many autistic people like labels that much more because it helps give order to our corner of the universe. This is order that many of us crave and need. But we are also hyper-aware that labels can be hazardous to perception of someones abilities.

Before you cast judgement, please be aware what that judgement means to them.

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Merry Christmas!

Yes, I say Merry Christmas. It is what I celebrate at this time of year. But, here is a partial list of greetings I am happy to accept if you happen to celebrate one of them:

  1. Happy Holidays
  2. Happy Advent
  3. Happy Solstice
  4. Joyous Kwanzaa
  5. Happy Hanukkah
  6. Joyous Yuletide

I’m sure there could be others I am missing. If I am missing one you celebrate, please feel free to let me know. I just didn’t do extraneous research before writing this blog.

No, this blog isn’t about holiday tradition in the winter. That is, except for one tradition that seems to transcend all of these celebrations: the giving of gifts. We all see the craziness to get the last of the hot holiday gift left in stock. (That craziness is even immortalized in Arnold Schwarzenegger’s “Jingle All The Way.”) We see the craziness of delivery drivers working overtime because people have made order after order on Amazon.

While gift giving often straps the financial resources, let me be the first to offer my temporal resources.

I would be happy to spend my time with and for anyone who is autistic. Do you need some help with something? Do you need an ear? Do you need strategy to help with someone else understanding what it means for you to be autistic?

Especially when you hit adulthood, there are not people there to help. So I’d like to help any way I can. I am not a licensed therapist, so I can’t offer anything of the like. But I can offer a friendly ear who is travelling the same road. (In the future, I hope to study for and obtain my license to become a therapist.)

However you celebrate, celebrate well.

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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

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That would be good for me, but…

For a few years, I seriously thought about entering the military. The structure and routine of being in the military was something attractive. I knew that would be an environment I would flourish in.

Why did I never go?

I will tell you the simple reason first. I couldn’t run the mile in fifth grade during the President’s Physical Fitness Challenge any faster than 14 minutes. Everyone else ran it in 8:30-9:30. I knew I hadn’t gotten any better at it by the time I hit high school. That didn’t give a lot of hope to get past boot camp. I had read that, even in the Air Force (which had a six week training period at the time), you would wash out if you failed the physical portion three times in a row.

What’s my other reason? I had no confidence I could finish boot camp. I just knew I would react poorly to the environment. I could never conjure more explanation then that. Now I can.

Boot camp, now known as Basic Military Instruction (or BMI), is a sensory overload experience.

I can hear current members and veterans alike saying “you bet it’s a sensory overload experience”. The thing is, that experience will illicit certain reactions and patterns of behavior when the soldier/marine/airman/midshipman must execute on a real scenario. But for those who are autistic, this is something that would backfire…

I always thought I would flourish if I could just get past boot camp. But for now, it’s just nostalgic reminiscing.

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Sundays With Jack

(This is the beginning of a small set of shorts I am writing. This is not real. I had many more people in the towns I grew up in, and I never played in a roadside park. Instead, I played in an unused field.)

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My name is Richard, but everyone in my hometown calls me Ricky.

Every Sunday, after praising the Lord in church, and after partaking in my mamma’s delicious Sunday lunch of barbecue brisket and potato salad, I return to the spot it all began. I go sit down at the broken down picnic table at the former roadside park. I spend my Sundays with Jack.

I originally met Jack when I was six years old. It was the first Sunday that my mamma told me to go outside and play after our lunch. She said she just wanted a chance to take a nap, but thought I needed the fresh air. As she’s shooing me out the front door, the only wondering in my mind was what I was going to do and where I was going to go. You see, I live in a town of about 5,500 people. When I was six, that number was a hair under 4,000. We didn’t have curbs along our street edges and flooding from heavy rains was controlled by bar ditches. We lived three blocks from the highway that went through the edge of town, and about one block from the main street that was paved with brick.

I decided to stroll down towards the highway. Just across that highway was a roadside park owned by our town. It was a place for a quick stop, empty the trash, relieve yourself, and maybe take a quick nap. But on a Sunday afternoon, all the travelers we had around had went on to Main Street and stopped at the diner. So there was little traffic for my six-year-old self to worry about when I ran across the highway.

It was in this park where I met Jack. Jack had sandy blonde hair, wore a pair of overalls with no shirt, and was barefooted. To see Jack, you’d think he was ripped from the pages of a Huckleberry Finn novel. However, in our town, you could find a few kids who dressed this way. I was pretty sure Jack lived on the farm just outside of town, adjacent to the roadside park. But I never asked if that was the case. Jack was the first of the two of us to talk, and he invited me to play.

We would play hide and go seek at first. With all the trees, hiding was pretty easy. Some Sundays when it was bone dry outside, Jack and I would use the bar ditch as a hiding place, too.

“Ricky, where are ya?!?” Jack would shout as he tried to find me. I was often up in the thick foliage of the trees. When Jack would get close to my tree, I couldn’t help but chuckle. Jack would hear me. I never won. However, we both had loads of fun.

After the first Sunday, I always was ready to go and play with Jack at the roadside park.

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The Mountains

Safe to say, the mountains are my refreshment. As someone once said to me, you just sleep better in the mountains. I must still be seeking out the mountains. When I left for work this morning, I saw a scene reminiscent of being in Denver.

When you go from the east side of the Denver metro to the west, you come to the final valley before the Rocky Mountains rise to the skies. As you hit that point with the city no long spreading out in front of you, but below you, the Rockies are there to welcome you.

What I saw this morning on the plains of Texas was unfortunately not mountains. But it was an optical illusion that looked like mountains. There were clouds low to the horizon, with a separate set of clouds more above me. The sun was rising over the low clouds. The low clouds were a deep blue shade, similar to how real mountains look when they have no direct light to highlight their true features. For just a moment, before I got to the highway and turned north to the sights of metropolitan West Texas, I was transported.

Mother Nature can be so kind and cruel in one fell swoop! 😉

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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.

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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.

 

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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!