Being Autistic Sucks…

*DISCLAIMER* I am not a medical professional; I am just some guy who has Autism that is talking about it. I have my experiences, and what I've learned from others, but this is not medical advice. I just want to spread some awareness. If you, or someone you care about, are dealing with Autism Spectrum Disorder (ASD), please find the support that you need. I want to talk, but I'm a teacher not a doctor.

Being Autistic sucks. There really is no way around it, no matter how often you call it a superpower, or focus on the areas of increased skill, it is a disability because it makes life hard. And we NEED to talk about it, especially since it is hard. For many it makes life impossible. But surprisingly few people I've talked to actually understand why Autism makes life hard, and a surprising number of them seem to prefer to remain ignorant when given the chance to learn more. I do understand this is a hard subject to talk about. Trust me, I'd be much happier if I never had to talk about it. But I do have to, and honestly, I want to, because I can (decently well I'm told). And if me being uncomfortable talking about this still leads to even a little improvement in the lives of any of my autism tribe, totally worth it. Probably.

If it wasn't clear already, today we're going to be talking about some of the hard stuff. I want to talk about two very common issues that most people with ASD have to handle every waking moment… and many of their sleeping ones. First, I want to talk about sensory sensitivity and the dramatic effect it has on our lives, and then the "Meltdown" or the moment every one of us fears… (psst, I really don't want to talk about that one, but holy crap it's important)

Sensory Sensitivity

Sensory sensitivity is one of the most common shared aspects of ASD, and much like ASD itself the sensitivity varies widely from person to person. I'll start with what I'm dealing with and then share some of the things I know others are dealing with as well.

Sound is the most important thing to me. No, wait, my wife is going to edit this… Sound is the 2nd most important thing to me. I tell people I'm obsessive about sound and almost always see that look of "Ahh, you like music, that's cute" and I have to stop and make it very VERY clear. I am OBSESSIVE about sound, not music. Ok, I'm obsessive about music as well, but that isn't for this post. Sitting on my desk right now I have 3 different sets of headphones, and I use each of them regularly depending on what I'm doing. And that is just my office… I've 4… 5… maybe 8 sets of headphones elsewhere (for music (wired and wireless naturally), for traveling, for sleeping, for sleeping while traveling, for noise isolation, for making it look like I can’t hear while I’m eavesdropping on conversations…). And I don't even want to think about how much I've invested in speakers and amplifiers over the years…

So why does sound matter that much to me?

Because I HAVE to hear everything around me, I don't have a choice. And most of the time, I don’t want to hear anything.

See, the typical brain has all sorts of wonderful components that handle things automatically. This is why you don't have to tell your heart to beat, think about digesting, or decide to pull your hand back from something hot. There is a component in your brain that handles hearing as well! This is why most people can have a conversation in a noisy room or can hear their name spoken even if they aren't paying attention to what is going on around them. That part of your brain takes all the sound information and processes it, then passes what it thinks is important to your conscious mind to actually "hear." For me, and many people with ASD, that part of my brain doesn't really work that well. This means when I'm in a room with 10 people talking, my brain is trying to "hear" every single one of them at the same time, with the same priority. When I'm outside, I can't filter out the sounds of cars, or bugs, or wind, or airplanes, or radios, or people talking, or the grass growing, or… yeah, you get the point. So, when I have a chance to control what I have to hear I take it. My dozen headphones allows me to fully decide what I hear. A level of control I rarely have.

I also have very touch sensitive skin. This one can be a bit hard to understand in that touch isn't painful for me, I just… feel things more. For example, I cannot put on lotion. My hands are so sensitive to touch that if I put anything on them, I FEEL the lotion on my hands for an hour or so after. Similarly, the very idea of putting on lip balm makes me aggressively rub my lips to get it off (literally, I just did it while typing this). I can't walk anywhere barefoot because the soles of my feet are the same. Even most carpet is too "rough" for me to be on comfortably. Bonus side effect though, I have the smoothest, most callus free feet ever. If anyone is looking for foot models, hit me up. (Fetishists... I know what I’m worth, start your offers high) 

I have other issues, most of my senses deal with a similar lack of filtering, and I am still one of the lucky ones when it comes to these sensitivities. Some people with ASD do feel pain with the slightest touch. Some hear what the rest of us would consider soft noises, like a car driving by outside, as piercingly loud. Many people don't recognize that detecting motion is a sense, and some of us have extreme sensitivities there, where just basic moving around can cause them to feel like they're on a roller coaster.

One of the biggest challenges in talking about this is the fact that you can never understand what I hear. No one can. I can describe it, I can talk with others that have the same issue, but there is no way to actually compare senses. I mean, have you ever stopped to think about if your senses might be different than anyone else's? I had ZERO clue that I had problems filtering out sound till I was in my 40s. I'd never talked about it with anyone, why would I? I’d never known what being able to filter sound was like, so I'd always assumed everyone heard things the same way I did. I was constantly confused about why people would choose to go to parties, eat out in noisy restaurants, go to sporting events… I just figured I was avoiding people. It wasn’t till my best friend (also ASD) casually mentioned something about not being able to filter out background noise that I knew that was a thing!

But we need to talk about it, even if it is hard. People need to understand that many of us aren’t actually trying to just avoid people. We are dealing with real, physical, pain and issues. Often, minor changes can be made that help out a lot! For me, I can't deal with crowded restaurants, so when I go out with friends and family we avoid Friday nights and my life is a lot easier. When I'm meeting people in loud environments, I'd love to be able to just say "I've got a sensory issue, can we talk somewhere more quiet?" without feeling like I sound like a creepy stalker luring them to a secluded space (I acknowledge the Hagrid Beard and Rasputin-esque presence might contribute). Being able to talk about sensory issues the same way we talk about wearing glasses, or having a broken wrist, would make a world of difference for everyone.

I'm going to use one more aspect of sensory sensitivity to transition this conversation to the topic I've been spending many paragraphs avoiding (Did I mention talking about this is hard?). Sensory sensitivities can be overwhelming , a word that honestly cannot begin to convey what it is like. I'd like you to try and get an idea of what I mean, next time you are somewhere busy, like a restaurant or subway station (or the in-laws house), take 30 seconds to close your eyes and try to listen to, and process, every sound around you. And I don't mean just listen to hear the noises, try to focus on every sound at once. I believe you will quickly find that trying to hear that much at once leaves you with no brain bandwidth to do anything else. Now try adding in feeling every inch of your clothes rubbing on your skin, and then every smell coming through like it's your job to find the source of the smell, and then just keep trying to focus on more and more. You'll hit a point where you can't deal with anything more, and chances are that will be fairly early in the process (I bet most of you won’t get to the smelling part).

Many of us with ASD don't get to stop when we can't process anything more… It just keeps coming. So, what happens when your brain is being forced to process more than it physically can?

The Meltdown

This is a sensitive topic and can be very subjective. This is my experience, and what I've gathered many others have dealt with as well. If you or others you know experience things different, please share with us. I honestly want to know more about what others go through.

Alright Brett, we can do this.

There is a limit to what a human brain can deal with, it is a physical machine that has physical restrictions. People on the Autism Spectrum often hit that limit, and how the brain reacts to reaching that limit is different for everyone, but a common term used to describe it is “Meltdown”. It is often used to describe when an autistic child throws what others see as a "tantrum" and can't be reasoned with, but I honestly believe it goes much deeper than that. You see, when you hit the limit, your brain has to protect itself, and it has to protect you too. This means smashing that "fight or flight" button with a sledgehammer, and well… we lose control.

I get frustrated when I hear people say that a meltdown and a tantrum are the same thing, because I know (and every parent of an autistic child also knows) the difference is massive. Generally, when a child is throwing a tantrum, it is because they want something and can't have it. And generally, the child is still in control of themselves, this is observable because most of the time when they get whatever it is they want, the tantrum stops. Meltdowns are drastically different.

An autistic meltdown is the person losing their ability to control, well, almost anything. The brain is so overwhelmed that conscious thought often isn't even an option anymore, and we revert to pure instinctive reactions. And this can get… ugly. Chances are you've heard about or possibly even seen an autistic child having a meltdown, they scream and thrash, bite, kick, and claw. You might see a poor parent or two trying absolutely everything to try to calm them down, but it doesn't work. Why? Because the child is STILL dealing with all of the sensitivities, still dealing with all of the confusion, but can no longer recognize family from strangers, comforting touch from aggression, or even what their own actions are. Kids can get violent their parents… And these kids often don't get better as they grow up. I recently talked to the mother of an autistic child that is getting to their teen years, the child is still having regular meltdowns but is getting so physically large it is getting dangerous to others.

Take a minute and let that process.

These completely innocent people are hurting those they love because their world is falling apart around them. Think about the families and friends dealing with this, knowing that this person does love them completely, but also knowing that any day they could innocently break someone’s arm, and not understand why 10 minutes later.

Also, sensory sensitivity isn't the only thing that contributes to this. Anything your brain has to process will add to the overwhelm. Emotional stress is just as big of a deal as any sensory issues, and often far harder to manage. And when you combine emotional stress with sensory sensitivity…

I am still very fortunate as an autistic person in that my meltdowns are rarely physical, and I am at a point in my life where I can manage most of my overload. But it still happens.

One of my greatest fears is that I will have a meltdown around people… again. I hate thinking about it, and don’t like talking about it either. I've dealt with minor meltdowns my whole life (and a few major) without understanding what was going on, and it was terrifying. All I could see was I would start getting frustrated, or dealing with a lot of sensory overload, and then I would snap and start lashing out. Throwing things was my go-to, in case you were wondering. Most of the time though I would get aggressively defensive at people and say hurtful things, and I could not comprehend why I would say them.

For most of my life I had no clue what was going on. I lost many relationships because of this. I was bullied often because of how I'd react. So, I figured I just wasn't meant to be around people and started shutting down. Between the sensory sensitivity and fear of losing control I just gave up on "normal" social interaction and would spend almost all of my free time alone, with a rare exception of a few close friends that I could always feel safe around. Shockingly, most of those ended up also being on the autism spectrum!

As time passed and I moved towards adulthood, I realized I needed to figure out how to exist in the world or I was never going to leave my mom’s basement (alright, I was upstairs, but basement sounds better). I've talked about the process of learning to blend in elsewhere, so I won't go into those details here. I always made sure I never let anyone get TOO close though, because I knew that there was always that chance that I'd lose control somehow, and ruin all of the effort I'd put into making them think I was "normal." I'm pretty sure that was a factor in my first marriage falling apart.

And to be honest… not a lot has changed. I still keep people at a distance because I'm afraid they will see me fall apart. I am scared to be in groups because that is just more people that might see me be Different. I'm going to a conference with my team in a couple days, and we're driving together for a few hours to get there. I can't stop worrying about what will happen if I Lose Control. And they know who I am and what I'm dealing with. I 100% believe they would never hold it against me… (editor’s note: we won’t) (Brettitors note: I did, they didn’t)

But I've seen the eyes of people who didn't know, didn't understand. I've watched as the kids I thought I was getting to be friends with started to avoid me. And so have so many of my autistic siblings. So many of us will never understand what is going on, will never be able to know that this isn't our fault, it is just how our brains work. I understand the basic biology behind it, I logically understand that there are things I won't be able to control, and it is not my fault. I still don't know it.

I believe this is something that more of us deal with than anyone can begin to imagine, because it is probably the hardest part to feel safe talking about. I promise you I don't want to talk about this, I want to stay safe and hidden. I don't want to have to wonder if anyone I interact with professionally knows that when I get overloaded I might start throwing things at them (“So Brett, maybe instead of lunch, let’s do a virtual meeting... lots of knives at Benihana”), but we NEED to talk about it because there are people suffering in silence. People who know that no one will ever accept them because no one can know the truth about them. I want everyone to be able to just talk about this, and maybe if I can help enough people talk… I can know it's not my fault.

Being autistic sucks. Talking about it is hard. But you know what? You and I just did it! And you knowing these things is going to make my life better, and probably better the lives of people you never knew were hurting as well.

If you can see how challenging life is for someone like me, keep in mind that I am on the very edge of the spectrum. I'm honestly ok, I have the support I need and can generally handle life. But most of the people with ASD deal with much more than I do. So now that you understand some more, talk to someone about it. I don't care if it's someone with ASD, someone you care about, or someone you just interact with a lot! Sit down and talk about what you've learned, tell them that some people just can’t filter background noise and that it’s interesting not scary, tell them what questions you might have still, or what you might be able to do to make life a bit easier for someone with ASD. Then do it again and know that you are honestly making a difference in the lives of thousands and thousands of people who are not able to show you what they need, including mine.

So, thank you, you’re going to make a difference for us, even if it’s hard.