Autism — Things You Can’t Correct

by Eric E. Cane

Let’s say you and I have exact houses. By all appearances, they are the same. You go into your house and the light switch inside the door turns on the lights inside the house.

You then walk over to my house and reach inside to turn on the light but nothing happens. The house remains dark. Or as you turn on the light switch, loud, harsh and painful sounds emit from inside the house. Or the lights come on, but they are so intensely bright, that you must look away because of the pain.

This is an example of the brain rewiring differences between neurotypicals and autistics. The pathways and what they activate are different. They are not the same. There should be no expectation that they would be the same. This is a difference that can’t be fixed by exposure therapy, casting out demons, or medicating to oblivion.

This means that for a meaningful understanding of someone with autism, you would actually have to rid yourself of preconceived notions of self and others and take the time to observe, question, and simply get to know them — and then accept them for who they are as individuals. Most people do this for people who are like them anyway, so why would anyone balk at doing this for someone on the spectrum?

I’m writing here in an effort to help people understand some things about autism. I give this from my personal experiences, having been diagnosed late in life.

Autism is a spectrum, meaning one autistic person may have greater or lesser variations or intensity of what I describe.

Misunderstandings:

1. You can force social interactions, but you can’t reduce the anxiety, pain, exhaustion, or depression from this form of exposure therapy.

We mask. We can often very cleverly hide how much it affects us so that you aren’t bothered by the level and intensity of what we have experienced or the sometimes days-long effects trying to recover from it. (Some cannot hide this well.)

In my 50+years on the planet, I have never, ever been able to reduce the personal negative effects or remove the recovery time from forced social exposure in small groups, large groups, or situations that put me in the center of attention. Not ever. My brain wiring doesn’t allow for change through exposure in this case.

I am highly skilled at not letting people know how much I am affected. This to the degree that no one knew I was extremely anxious, depressed or suicidal at different times in my life.

This is what masking is. We cover up our innate intensity of things others might assume are just simple interactions or things that are easy to “get over”. The only thing that exposure therapy like repeated forced social interactions has ever done is help me craft an outward appearance of calm or capability. It does not ever reduce the lead up or after-effects of the event that others don’t see.

Not ever.

And this is not for lack of trying. I’ve forced myself into acting classes and other social exposure settings to rid myself of what I thought was just intense shyness to the point of sickness. I performed well. But in the end, it was a performance, as our masking is.

2. You can explain how something feels to you, but our ability to understand its impact on you is from reading facial expressions, details of body language, and the words you use. As you can figure out, this can lead to a lot of misinterpretation.

We autistics have an extreme difficulty defining our own emotional states. Our OWN emotional states. This should help you understand the difficulty we have defining OTHER people’s emotional states when we can barely or not at all define our own.

This does not mean we don’t feel or have empathy. We feel deeply. We intuit others emotional states — even ones people don’t think they are expressing — but we don’t know their source, their intent (or to whom they are directed), what they mean to the person feeling them. We don’t even know what our own emotions mean to us. We have to take a very long time trying to put words to what we are feeling.

This doesn’t mean we aren’t feeling them intensely, we just don’t know where they are coming from or why they are so intense at times. We may read other people’s emotional turmoil and through our sometimes quite elevated and detailed visual and auditory understanding can be immensely affected by it. To the point of becoming extremely anxious or depressed ourselves and then even more so because we don’t know where they source is or where it is to be directed.

Phrases regarding emotional states that I’ve heard in my life are; “you should just know!”, “everyone knows that!” and the like.

Well, I’m here to confidently say, “not everyone knows”.

There are studies out showing that autistics can have greatly atypical pain responses to certain stimuli. This explains why many of us feel actual, physical pain to sounds, bright lights, soft touch, or from looking into someone’s eyes.

I know how that looks. For many neurotypicals it might seem imaginary or made up. But having experienced this all my life, I can assure you that it is real. I can feel deep pressure and not be bothered by it at all, but light pressure is intensely discomforting and looking into someone’s eyes is actually a painful experience. This is not something one can just “get over”, it has been this way all my life no matter how many times I’ve worked to expose myself to that stimuli.

That’s autism. That’s the pathway and wiring that doesn’t change with exposure. It is a brain structural difference and interpretation of sensory data. It’s like skin color or eye color. We can go through lengths to change each of these, but at the genetic underpinning, we are still the same skin color and eye color passed down through our genetic predecessors.

I hope that helps people who don’t understand what many of us on the autism spectrum experience to one degree or another. Please share this to anyone you think would benefit so that actual information can replace myths, lies or simple misunderstandings.

(Note: mitigation of the intensity of some of these things, though awareness of triggers, earphones that can reduce the intensity of sounds, stimming to help with anxiety, time in seclusion, and the like, are part of why it’s important for people on the spectrum — and others — to educate themselves so more misunderstandings or ridicule doesn’t arise.)