Awareness. Education. Acceptance. Inclusion.

We are in the midst of World Autism Awareness Week. The week ends on World Autism Awareness Day, which is the second day of World Autism Awareness Month. Needless to say, we’ve got a lot of awareness going on. But I tell you, awareness is not enough. There needs to be a model that starts with awareness, continues with education, followed by acceptance, and ending up in inclusion.

Awareness

Awareness is a great thing. That means you know something exists. It doesn’t make you engaged in anything. It doesn’t make you a better person. There are a lot of people that are aware of things that do nothing with that awareness. You get an average person that ignores it all together. Then you get a celebrity that will throw money at it and put on a good face in public. We must go past awareness.

Education

Education is a huge component in this model. Many people will shun an autistic person because they are not the same. This is called xenophobia. It is common for xenophobia to arise out of lack of knowledge. You don’t know about this person that is different than you, so you want nothing to do with them. We must educate people about what it means to be autistic. We must be willing to try and educate without antagonizing. People will learn at their own pace. People will learn if they choose to. You cannot control this outcome, you can only provide the information for them to use.

Acceptance

This is the next big step after education. Once someone understands you as an autistic individual, then they have the capacity to begin to accept you for who you are. I have various people in my life who are at different levels of acceptance. All I can do is stay consistent in my message and be patient.

Inclusion

A natural growth from acceptance is inclusion. Once people can understand you and accept you, they are often more willing to include you in things. They are willing to make adjustments for you. However, don’t stop the education process. I like to give the example that how an autistic brain thinks versus a non-autistic brain is like two different languages. You may be able to learn the language, but you will not always understand it.


(As a point of order, this model is a good one to follow for all different groups of people. Give people an opportunity to know you and understand you.)

I Don’t Care

Three little words.

“I don’t care!”

The combination of these words are connotative of the ideas of insolence and insubordination. This statement belongs to rebels and ne’re-do-wells. This is a sentence that has NO PLACE IN SOCIETY!

Let me debunk that. Casting stones at people that make this statement, or statements like it, is just a sign of attempts to be controlling. Control is necessary in some instances. If you’re trying to instill discipline in a child so that way they have some needed structure, or if you’re in charge of a military unit that must operate of one mind otherwise the risk injury and death, control is necessary. Where it is not necessary is in modern society where a plebiscite rich in creativity, curiosity, and independent thought. These are things that are championed as valued traits. Yet, when we shut down “I don’t care,” we lock those traits up.

“So how does this apply here? Do you ever say I don’t care about something?”

I like making sure I’m doing my part to make sure my family is taken care of. That is one thing I will hold sacred. Otherwise, I’m starting to make myself say these three words almost as a mantra.

“I don’t care!”

Yes, I am off and quirky. My thoughts may not match yours or anyone else’s. But, I get the job done.

“I don’t care!”

Your perfume or cologne is overpowering. I don’t have to sit there and endure it. It doesn’t offend me, but it does physically distract me. Sometimes it even hurts me.

“I don’t care!”

Yes, I always do it this way. If you would like to see me do it a different way, please show me what you have in mind and be willing to have a conversation about which way is better.

“I don’t care!”

I understand you have feelings, and I will do my best not to hurt them. Conversely, please understand that my questions and statements will rarely have feelings or intent attached to them.

When it gets down to it, I am happy to help educate you about working with and interacting with autistic people. It’s not all the same, but many of the basics line up. I’m not the only autistic person out there. There are lots of them. But I do not care to pretend to be something I am not. I try harder than most people do every day just to try and seem “normal”. That’s not even adding on top of the situation everything else that I need to do during a day.

I don’t care about social conventions. I do care about being genuinely social. I don’t care about what you think should happen. I do care about educating you what can happen.

I’m autistic. So are a lot of other people.

I don’t care! Neither should you!

Just Make It Stop

We’ve all been somewhere we didn’t want to be. We’ve all been in situations we didn’t want to be in. In life, we have to ride certain situations out. But can I share a secret with you?

Even though I find ways to appear ok in times like that, I’m not. In times like that, my greatest strength becomes my biggest weakness. I am always analyzing possibilities. What can I do here? What can I do there? What can I get away with on this? Can I squeeze by on that?

When I run out of feasible options on something, I start doing this to other things. My brain analyzes and assesses things. Sometimes, it creates a vortex that I feel like I am getting sucked in to with no control.

I want it to stop. I can’t make it stop. It won’t stop. I present well to others. But I get both physically and mentally tired more quickly

Pancake Day!!!

This is a favorite day of mine. It’s known as Pancake Day, Shrove Tuesday, Fat Tuesday, and Mardi Gras. Sure we all know about Mardi Gras. That annual carnival in New Orleans is legendary. (I’ve never personally been.)

A little background…

Since tomorrow is Lent, that means it is the first day of the fasting period remembering Jesus’ 40 days of fasting in the desert. So people often give up, or fast, something during Lent. Traditions of a Lent fast originated in the giving up of certain food.

Shrove Tuesday, the day before the start of Lent, is the day that you traditionally receive absolution from your sins before going in to the fasting period.

What often happened is that many cultures would gorge themselves on rich foods the day before the start of Lent, hence the name Fat Tuesday, which in French is Mardi Gras.

Where the pancakes come in is that pancakes are a food that allowed the cooking up of richer ingredients that a family would have at home.

A tradition that grew in Great Britain on Shrove Tuesday is racing while holding a skillet with a pancake in it. Depending on who tells you the rules, you must flip the pancake at least at the beginning and the end of the race. There is even an international competition that happens between the town of Liberal, Kansas and Olney, Buckinghamshire since 1950. Olney is the traditional birthplace of the legend behind the pancake races.

Burnout

My posts came to a screeching halt there for a little bit.

“Oh no, he’s flaky!”

No. I was just hit by a figurative one-two punch. So before I tell my story, let me tell you a little about suffering burnout as an autistic person.

“Tim, everyone can hit a rough patch every now and then. You can get past this!”

Oh boy, the good ol’ “rub dirt in the wound” statement. I will tell you right now that autistic people encounter the same things as non-autistic people. But, they just don’t process things the same way. It’s a fact of life that doesn’t change.

For anyone, burnout happens whenever you are able to do self-care less and less, until you can’t do it at all. At some point, the dam overflows and you just can’t take it anymore. For most people, you can avoid this by watching a good TV show, having a good meal, or go out for an evening on the town. For autistic people, it may not be that easy. One of the toughest things is, for many autistic people, the ability to explain the burnout to someone else might have gone away. Since talking is a good therapy for anyone, you can see how that would throw a wrench in the works.

So for me, that burnout happened last month. After it was suggested to me to play hooky the next day, my good sense took leave and I did just that. It was good for me to live life on my terms for a day. Among all the possible fixes, that was the best relief valve available to me.

Unfortunately, flu came knocking at the door within a few days of that. I haven’t had a flu shot since public school. I also haven’t had the flu since public school. So it was a sock in the mouth to be hit with it.

I was the first person in the family to get it. I wasn’t the last.

I also was dealing with my web host not keeping my website up regularly. They were in Houston, and so I don’t know if their troubles had anything to do with the extreme weather suffered there, but I was done. So I had to shop for a new host, get things transferred, and make sure things were working.

In among all of this, I was still having problems with the effects of my burnout. I had lost the ability to put anything on paper. No blogs. No novel. Diminished social media posting. I just had nothing.

Norway

Some days it just feels like it would be easier to move to Norway. I would just need to find a job and learn to speak Norwegian. Then I ‘d be a shoe-in.

But I’d need to speak Norwegian first.

Does anyone remember the saying that “Rome is burning”? That talks about when Nero set fire to his own city, blamed the Christians, and made no effort to put out the flames. That’s what I feel like right now. We elected Nero. He’s set fire to Rome. It makes me just want to move somewhere like Norway.

But I’d need to speak Norwegian first.

We can’t just find a formula and stick with it in our country. We have approached the point where every new group is reinventing the wheel. Not because the wheel went away. But because they want the by-line. Meanwhile, the citizens of our country are trampled over because of the actions of a few. Too bad we couldn’t just move to Norway.

We’d need to speak Norwegian first.

What place will take me if I speak English?

Patterns

Not every autistic person is Rain Man. Let’s just get that clear right now. That includes me. But there are some of us who are really in love with patterns. I believe my catch with patterns is what allows me to sit down and pour through spreadsheets and find the holes and trends. I love analysis, probably because I have a love of patterns.

But let’s get one thing right. Patterns aren’t always about numbers. Even when it involves numbers, it’s not about numbers.

My wife and I finally had enough of our phones that were four generations back. They were paid off. We were settled in to them. Had we known the trouble we were in for after the iOS upgrade, we probably wouldn’t have done it. But here’s the problem with that. Eventually, all those nice apps we love to use will eventually no longer be compatible with our phones. So we had a good deal available to replace the phones. But I had to change my phone number to do it.

Everyone said “finally, you can get a local number”. But of course we all know area codes don’t mean what they used to. Since that was the case, I was looking at the pattern of the number. Not the pattern of the numerals, but the physical pattern on the dialer. I picked my area code. Then the customer service rep showed me some available numbers. I was sitting there air dialing each number. There was one that felt correct, and I chose it.

Some people have said it was weird. In a nutshell it is, but it is me. But something I will tell you is that, for the first time ever, I don’t have to go checking every time I tell someone my new number. I just tell them.

It sometimes surprises me…

People who have known me for quite some time (mainly family) don’t always process some things that are problems for me. That’s ok. I still have problems understanding my problems and the source of them as well.

I help maintain some things in a call center environment. Yesterday, I had to spend about 90 minutes in that environment. About 20 minutes in, I was really starting to wish I had brought my earplugs with me. First, I noticed I was getting physically on edge. Second, I started realizing it was the noise. It wasn’t the volume (I’ve explained this effect before). It was the many voices talking about the same level. It was the lack of moving air. I remembered my earplugs for a visit to the store later in the day, but I was having trouble the rest of the evening after that.

It surprises me, still. So it’s ok that others still have issue understanding.

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.

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.)