What is it?

Understanding the Autistic Mind is a 34-page guide written as a collaboration among autistic individuals from around the world who speak English or Spanish. It is posted for free on Neuroclastic’s website. So, it’s not a book, but an article I found so valuable that I wanted to specifically share it and offer my thoughts after reading and reflecting upon it.

Three sentence summary: Understanding the Autistic Mind explains a foundational concept for understanding autism: the autistic mind cannot discriminate or filter stimuli. Autistic overload occurs as a result of that inability to discriminate or filter stimuli, which can manifest as autistic burnout, meltdowns, or shutdowns. Rather than “symptoms,” autism characteristics can be better described as “tools” for managing a mind that cannot control the input it receives – stimming as a tool for self-regulation, routines as a tool for decreasing the mental load of processing stimuli, hyperfocus as a tool to compensate for difficulty with filtering, and isolation as a tool to recover from overload.

Who is it for?

It’s for any educator, parent, or individual that works with autistic people looking to grow their understanding of the autistic mind and how it operates.

Why read?

In my opinion, this guide explains how an autistic brain sees and experiences the world better than any other I’ve encountered.

“Every autistic person is fighting a battle you know nothing about.”

This is how the guide begins. And there’s a reason for that. Pause for a moment and think about what that could mean, why is this how a guide to understanding autism created by autistic people starts?

Have you heard the quote by Aristotle that goes: “The more you know, the more you realize you don’t know”? To truly learn from others and their experiences, we must understand that we won’t know everything. Just because we read this guide about understanding the autistic mind does not mean we will suddenly know everything there is to know about what autistic people go through. There will always be more to learn, more to discover, more to understand and connect – and that isn’t a bad thing. That shouldn’t scare you, that is exciting because it means that we will keep growing, learning, evolving, adapting over time and we won’t stagnate unless we choose to. Learning, understanding, growing is endless.

So, whether you feel like you understand autism or not, I encourage you to read the guide. I encourage anyone and everyone to read this guide, especially if you live with, work with, or otherwise engage with autistic people. It’s free, valuable, and won’t take long to read. So do it. Do it now.

Or if you want to read the rest of my thoughts on it cool, keep reading, but I’ll remind you again at the end because I don’t think you’ll regret it. The following is more of a reflection than a summary. I expand on certain topics covered with my own thoughts and do not go into every topic the guide discusses.

The foundation of the guide – processing stimuli

I’ve heard this quote several times in university, “If you’ve met one person with autism, you’ve met exactly ONE person with autism.” Educators liked this quote because it emphasized the idea of the autism spectrum, not all autistic people are like what movies once portrayed, we’re not all intellectually disabled, non-verbal, nor are we all a fanatic genius professor type. Not all autistic people are white young boys like research once suggested. That’s a great distinction; however, I think this quote takes the spectrum idea too far into the territory of autism being a “puzzle,” mysterious thing we can’t understand. And that’s just not true. This guide reconciles this autism spectrum “puzzle,” by providing a foundation upon which to understand autism.

Simply put, this guide explains that the autistic mind cannot discriminate or filter stimuli. And that insight sets the foundation for the other autistic traits we see.

This was the most informative part for me, as an autistic person. I had never read this before. It wasn’t in the DSM. It isn’t listed as a common characteristic of autism. It wasn’t taught in my “autism” course in university (among many other things). This piece that is the basis for understanding how the autistic mind operates is not even mentioned in the primary sources depicting autism.

Diving deeper – reflecting on the implications of an inability to discriminate or filter stimuli

Since the autistic brain can’t discriminate or filter stimuli, autistic brains don’t process the “big picture” like the neurotypical brain. Each detail or stimuli is processed individually, and they are all weighted as important. Stimuli is not filtered as something to tune into or ignore. All of the stimuli has to be taken in and processed.

What does this mean for the autistic brain?

  • No “big picture” – perceive the world in details
  • Prone to sensory overwhelm – cannot filter out unnecessary stimuli

Bottom up processing refers to an individual who perceives the world by taking in a collection of small details and fitting them into a big picture understanding by noting patterns and making connections among the details. This differs from top down processing in which an individual perceives the world by forming a cursory understanding of the big picture immediately and then dives deeper into exploring the small details that make up that big picture. This is why we can think of an autistic brain like a computer that operates under a different program, both ways take in the information, but the way they are processed and interpreted is wildly different.

The autistic brain gets “stuck” on topics because it needs to amass and then put together all the details about that topic in order to feel that it has a cursory understanding. There is no top-down, surface-level understanding that allows the autistic person to easily move on to another topic. We cannot fill in the missing details like a top-down processor. Why do autistic people have “special interests” that they want to learn every detail about? Because our brain is not meant for having a basic understanding of many things; our brain is built for having a comprehensive, complete understanding of few things.

The autistic person is far less attuned to the motor output of their facial expressions (or lack thereof), body language, tone of voice. They are processing input, while the output is underserved. Eye contact requires processing even more stimuli, processing facial expressions, emotions, body language, tone of voice, on top of already needing to process verbal speech.

The neurotypical brain takes in the whole picture of facial expressions, body language, tone of voice rather than processing each individually, so they are not as taxed by the process. The autistic brain processes each individually, puts together every detail, and it is extremely demanding to process so much stimuli at once, especially in real time conversations when there is not additional time to connect these details into a meaningful conclusion.

Your autistic person is more prone to auditory processing disorder, not because they have a hearing problem, but because they have a discrimination problem – they struggle to isolate the verbal speech from the competing background noise of the environment. They cannot filter out the background noise.

Your autistic person is more prone to alexithymia because they struggle to discriminate and perceive their own complex emotions among outside influence or stimuli; similarly, they struggle to discriminate between others’ emotions and their own.

The autistic brain struggles with executive function because an autistic person does not take in a surface level view of a situation or decision, but processes each detail so that planning, executing, decision making, time management, anticipation – none of these tasks are intuitive. Every basic task has a different set of variables and the autistic brain treats all of them as equally important to consider and manage.

Stimming is so important to an autistic brain because output, or engaging in that stimming, can block input, which acts as a coping mechanism for taking in so much stimuli.

And your autistic person needs extended sensory breaks or isolation periods to decompress and recover from the constant processing of an enormous amount of information in the form of stimuli.

What happens to a brain that cannot filter stimuli? Overload.

The guide breaks down three types of overload – burnout, meltdowns, and shutdowns. The famous autistic “regressions” we hear about? Yeah, that’s burnout.

Burnout isn’t unique to autistic people, but there is an important distinction. Neurotypical people can absolutely experience burnout, when their environment is too relentlessly demanding and they have pushed themselves past their capacity. Autistic people can experience regular burnout, as aforementioned, and autistic burnout, when their environment is too sensorily demanding or socially demanding and particularly when an autistic person masks, when they have pushed themselves to mask their autism past their capacity.

The problem with society, is that since it is built around neurotypical capacities and norms, the social expectations inherently exceed an autistic person’s capacity.

That pressure you feel to perform during a job interview lasts the length of the interview, but for many autistic people, life demands interview-level performance. The pressure is constant, relentless, to perform just right so that other people might accept you, but no matter how well you feel that you perform, it’s both not enough and not sustainable.

The guide states: “Without reasonable adjustments, autistic people live more than 50% of their lives in a state of burnout, and from adolescence onward, the percentage is higher due to increased social demands and the little control we have over our environment to limit stimuli to a manageable amount.”

Burnout describes any loss of ability or capacity to function. That can be mental, like living in a state of depression, chronic anxiety, insomnia. I’ve found that the more I’ve pushed myself trying to be “normal” and not needing accommodations, the more my body in turn demanded them. When I ignored the mental alarms that I couldn’t handle a certain environment, eventually my body forced me to stop. This is what we are doing when we insist our autistic people operate without accommodations.

We push the autistic person until the accommodations are no longer optional. If we accommodated the autistic person first, we wouldn’t need to lose our capacity to function. Burnout is not inevitable; it is only inevitable when we ignore and suppress our states of overload.

The guide differentiates what we think of as “tantrums” or “behavioral problems” from autistic meltdowns due to overload. One of the key differentiators is intent. Tantrums or behavior problems begin to achieve a desired result, and once that result is achieved, the tantrum will stop. An autistic meltdown, since it is a result of overload, does not have a clear intent; it is an extreme response to an overloaded system. A meltdown doesn’t immediately stop when a child gets what they want.

Overload can come from the outside sensory landscape or the internal emotional landscape. Acceptance, accommodations, understanding, support, all of these things can help reduce some of the time an autistic person spends in a state of overload. An autistic person needs a support system just like anyone else that is free from shaming and judgment. And unfortunately that is not easy to find in our world as it is.

Quotes

“We cannot choose which stimuli come in or which stimuli we will use that day. Nor can we get rid of them; if they have already entered our minds, processing them is the only way to get rid of them.”

“Some people say that autistic people don’t feel feel enough. We’re saying the exact opposite: They feel too much.”

“How would you feel if you were required to hurt yourself every day in order to meet the expectations of others?”

“In “tantrums,” we have the feeling that the person who has them is the one who controls the situation. In the overloads, we feel that nobody controls the situation.”

“The slightest possibility of facing a meltdown forces us to live in perpetual alert, in a terrifying state of anxiety and fear.”

“It is necessary to consider social interaction as an intense emotional stimulus and therefore the need of the autistic person to isolate from it for self-protection must be respected.”

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