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Dec
11

On Being 1 at 34

Prune this!For my 33rd birthday, I was given a semi-professional diagnosis of Aspergers. Even though I had been Autistic my entire life, I was until that point unaware that anything was different about me. Getting a mental health professional to slap a label onto my way of thinking, thus pointing out how I veer from the norm, was quite traumatic (while also being refreshing). Those first few months were a struggle at times, trying to reconcile the whole of my previous experience within this new framing. Things finally made perfect sense, while at the same time not making sense at all… though I’d be surprised if that makes any sense to anyone else.

In my search for understanding, I wrote a thing. Looking back on that piece a year later, I’m honestly a bit embarrassed at what I thought I knew. I thought I had all the answers. Since then, though, I’ve learned more about how my brain works versus an NT brain. As such, I’d like to add to my previous post. Consider this an update on what all I’ve learned during my first year as Autistic Jeff Pickles.

 

Being One (Year Old) at 34

I consider my 33rd birthday to be the day I was reborn. Knowing that I was indeed the different one was eye-opening. It shook my consciousness to the core and made me re-think everything in life. The first 33 years of my life I was living under a shroud that was now removed. I was bare. It literally was a new start.

Until that day, I was just like everybody else, though thoroughly confused as to why no one seemed to focus as much on logic and intellectualism as I did. The world around me angered me because in my mind everyone thought the same way as I did but then ignored what they knew in order to work the system. I just couldn’t believe anyone would ignore the things that were so obvious to me, so therefore they were intentionally acting counter to that obvious truth. This perceived intention drove my thought process, as if everyone were doing it just to spite me or gain for themselves at the cost of everyone else.

Yes, I understand that NTs have difficulty understanding my thought process, too. I know it’s a two-way street. I’m not saying I’m the only one who has difficulty putting themselves into others’ heads. NTs, too, are rather lousy at understanding the inner state of minds too different from their own; however, the NT majority gets a free pass because when they assume that the other person’s mind works like their own, they have a much better chance of being right. It’s strictly a numbers game and I know where I lie in it.

I’ve gained an understanding that I am in the minority with the way I think. Thus, I don’t take things quite as personally when mistranslations occur when using my English-to-Jeff dictionary. I’m at peace with the thought that our thoughts will differ wildly. I just hope to include people in my life who understand and accept this, as well.

One (Unifying Theory) to Rule Them All

To further this goal, let’s start out with what I think is the best attempt to explain Autism. Upon stumbling upon this article about the Intense World Theory, I immediately found myself nodding my head often while reading along. The article spoke to me in a way that none other had before because it was exactly what I constantly experienced in my head. I finally had an Owners Manual for my brain!

The core aspect of the Intense World Theory is that Autistic brains have more neural connections than normal brains and that this over-connectivity causes an inundation of information that at times overwhelms the brain, forcing Autistics to withdraw from over-stimulation in various ways or to rely upon routines to compensate for over-processing information when unexpected environments or outcomes occur. The latest theory is that this over-connectivity stems not from having more raw synapses than normal brains, but that Autistic brains don’t prune synapses as effectively as normal brains. As we age from toddler-hood to adolescence, the brain naturally prunes down connections that don’t get used, a way to optimize operations. In an Autistic brain, though, this pruning is inhibited. The end result is that an Autistic brain isn’t as efficient as a normal brain.

For instance, look at this High Definition Fiber Tracking scan of Temple Grandin’s brain versus a control brain:

A picture is worth a thousand words

These scans show the neural connections used when connecting visual thoughts to language. The Autistic brain is the one on the left. Note how scattered the signals are in Grandin’s brain versus how focused and linear they are in the control brain. Considering how this over-connectivity relates to every component of the Autistic brain, it is easy to imagine how it takes a lot longer for me to assess exactly what I’m thinking at a given moment.

For example, let’s say you ask me how I’m feeling today (a seemingly innocuous query):

You: “Hey Jeff, how are you today?”

 

Language Center: “Alright, brain, let’s assess our current emotion. Emotion Center, report in.”

Visual Center: “Those eyes are intense!”

Touch Center: “It’s making our skin burn.”

Auditory Center: “Why is it so loud in here?”

Brain HQ: “Avert gaze!”

Emotional Center: “Standby, Language, measuring mood.”

Brain HQ: “C’mon, c’mon… this is taking too long!”

Visual Center: “Checking gaze… Affirmative. Subject seems to be getting annoyed.”

Emotional Center: “Oh no! What did I do wrong?”

Olfactory Center: “This guy’s cologne is overpowering.”

Motor System Control: “Requesting permission to bite nails, sir.”

Auditory Center: “Seriously, what’s with that whirring noise?”

Brain HQ: “Permission denied, Motor. Stand down. Stay put.”

Emotional Center: “Results inconclusive. Cannot discern current mood. Can we get more time to figure it out?”

Visual Center: “This floor has the most amazing checkerboard pattern, guys.”

Brain HQ: “Abort emotional evaluation. Language, prepare the canned response.”

Taste Center: “These fingernails are salty.”

Language Center: “Queuing non-confrontational response number 1, sir.”

Brain HQ: “Motor, I told you to stand down. Now we look nervous.”

 

Me: “I’m good. How are you?

If this seems like a lot… it is. And it’s always going on. This is why I get so exhausted after a day of socializing that I need some “me time” to recharge my batteries.

Basically, an Autistic brain is like an overclocked computer. It’s running at a higher speed than it was designed for, specifically because the shotgun scattering of information isn’t as efficient as it normally had evolved to be. Scientists have found that an Autistic brain produces 42% more information at rest than a normal brain does. This makes sense because of how widely the data is transmitted internally and the additional information this causes to be introduced to the system… if only in negative feedback and crossed connections. Really, there isn’t a filter on various sensory inputs and thus it ALL gets processed at once.

You might be thinking: That 42% excess sounds great! How are you not a superhero? Ah yes, but there’s the rub. Normal brains shift their processing power to match the task at hand. When at rest, they reduce processing to match demand. When demand for brain processing increases, say in a high-stress situation, the brain ramps up production to meet the need. To accomplish this without being overwhelming, the brain uses sensory filters to block out the seemingly unimportant data that the eyes, ears, skin, etc., are sensing.

While the Autistic brain processes more information while at rest, it does not upscale well when needed. There is no filter, thus the Autistic brain tries to continue processing every single sensory input that is coming in. Eventually, it becomes too much and you have to remove stimuli somehow… sometimes by the drastic measure of escaping the scene.

This is why situations that don’t bother NTs — like noisy restaurants — can wreck havoc on Autistics. The NT brain ramps up to meet the need because it can filter out the random background noises, smells, etc., that are unimportant to the task at hand. The Autistic brain tries to make sense of everything it is experiencing. Combine that with trying to make sense of seemingly alien NT social norms, and you get a recipe for a shutdown or meltdown.

The Autistic brain produces more information because of the excess of neural connections, but also doesn’t have a way to filter out unnecessary stimuli. Seems simple, right? Introduce one overall filter to reduce the amount of information being sent for central processing. Bada-bing. Done.

But wait! Remember that pruning of synapses we talked about earlier? Yeah,… it’s not consistent. Some areas get pruned enough. Some area don’t get pruned at all. Some get pruned too much. And there’s no telling which areas are pruned at all! Every brain gets pruned differently, so every Autistic is different. Hence the expression, “If you’ve met one Autistic, you’ve met one Autistic.” Some of us have sensory issues with sound, some with touch, some with a combo of senses, and some with every sense. So those sensory filters can be nearly complete, completely non-existent, or anywhere in between.

Sounds complex, right?

We are.

(As an aside, for further info on the latest research on how Autistic brains vary from normal ones, I highly recommend Temple Grandin’s latest book, “The Autistic Brain.”)

Being One (Transcendentally) at 34

Over the course of the past year, I’ve wavered between being absolutely certain that I was Autistic to wondering if I were just making the entire thing up in my head. You can imagine that such a large shift in thinking about ones own worldview could cause there to be some doubts and second-guessing.

When I last updated you all, I was what I called “semi-pro” diagnosed by a Masters-level clinician. Since then, I have been seeing a psychologist who has 30+ years of experience with Autism Spectrum Disorders, going back to his grad school days. In one of my earlier sessions, he interrupted me and said, “Tell me about your sensory issues.” I was speechless. I knew I had found someone who knew what he was talking about.

After a lot of self-reflection, I’ve come to understand exactly what my sensory issues are. It’s a weird concept to finally realize this at 34. I always just assumed everyone had the same issues but was much better at ignoring them than I was. Everyone seems to enjoy being in crowded environments that make them have to raise their voices in conversations. Why am I the only one who winces at this thought? Do I just need more practice? Three decades of this thinking made me feel inferior to everyone else. I’m not inferior… I’m just not built to enjoy it. My brain didn’t prune in specific areas that would allow me to block out that information when needed.

My sensory issues are mostly focused on auditory and olfactory processing. When I was a kid, I could always tell when my parents were playing Dr. Mario. It didn’t matter where I was in the house or what I was doing. I could simply hear that they were on the upstairs TV, where the Nintendo was hooked up. You see, the high-pitched ringing that the RCA television upstairs produced was completely different from the high-pitched ringing that the Zenith downstairs produced. And no one else could hear either of those noises.

I was in a waiting room recently that had painted cinder block walls on all four sides, with an old tube TV in the corner. The ringing was so unbearable for me, especially because it echoed off of all the walls to amplify the annoyance. After a few minutes, I couldn’t take it anymore and had to put headphones in to block out the sound. They didn’t work, but at least they blocked out some of the unbearable sound that no one else could hear. Everyone looked at me as though I were crazy when I asked to leave in order to flee the TV in the corner.

My sound sensitivity is by far the worst issue for me, but smells give me issues, too. For instance, while I was sleeping last night my dog Makani had a seizure, lost control of his bowels, and pooped all over the interior of his crate. When I entered the living room this morning, the smell of feces was overwhelming. As soon as I smelled it, I could feel it permeating throughout my entire body. I felt unclean, as if consumed by the odor. After cleaning up the mess, I went about my normal morning routine. The shower, however, was not as effective as usual.

The entire bus ride downtown felt unclean… well, more unclean than usual. During the walk from Union Station to my building, I could smell every alleyway, dumpster, and urine stain. Because the original smell of that feces was so overpowering, my nose became super-sensitive in an attempt to clear out the foul resident, only to keep bringing in more and more stenches. My nose was saying, “Hooray! This isn’t poop smell! Let’s take it AAAAAAAALL in!!!” The problem, of course, was that everything around me was almost as bad as the original violator.

When I stepped into my office, I suddenly felt less dirty. I could smell a ton of cleaning products used in my office. For the next hour or so, I felt like i had bathed in Pinesol. Eventually, my nose chilled out and went back to normal operation. I also stopped feeling the smells I encountered, which is definitely a good thing when you take your lunch break. Though… you are what you eat, right?

So,… yeah. I have some sensory issues that I always figured other people dealt with, too. Live and learn. It’s who I am and it’s what makes me me.

After discussing these issues and a bunch of other things with my psychologist, he bluntly told me, “You’re on it [the Spectrum].” So there it is. I have a professional diagnosis. I am Autistic.

I haven’t gone through the official testing process because it’s not covered by insurance, and therefore pricey. But this is good enough for me. I consider myself professionally, though not officially, diagnosed. As stated previously, I don’t need that piece of paper. If a man who has worked with ASD individuals for 30+ years can say with certainty that I am Autistic, that is good enough for me.

And if I can learn all of this in the first year of my Autistic life, imagine what the next 33 years will bring.

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