This episode and future episodes will help you understand yourself at a deeper level & learn how to unequivocally be YOU without apology. :) In this episode, I talk about the struggles that autistic people deal with throughout our lives. Why is it important to you, to know who you are? I discovered that I am autistic at the age of 26 - after spending years of my life wondering why I am different from everyone else - and believing that I was an alien that no one would ever really understand. Turns out, there are millions of people like me, living a similar, intense, beautiful, life experience. How would you feel if - everyone around you spoke a different language that you could not understand or even conceive of? And what would it be like for you if you could strip away all the negative self talk and judgement that you've been stuck with for so long?
This episode and future episodes will help you understand yourself at a deeper level & learn how to unequivocally be YOU without apology. :)
In this episode, I talk about the struggles that autistic people deal with throughout our lives.
Why is it important to you, to know who you are?
I discovered that I am autistic at the age of 26 - after spending years of my life wondering why I am different from everyone else - and believing that I was an alien that no one would ever really understand. Turns out, there are millions of people like me, living a similar, intense, beautiful, life experience.
How would you feel if - everyone around you spoke a different language that you could not understand or even conceive of?
And what would it be like for you if you could strip away all the negative self talk and judgement that you've been stuck with for so long?
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Imagine walking into your job, ready to start the day and then the fire alarm goes off. You look around, expecting other people to be exiting the building or freaking out or some type of response and yet they're all calm. So you ask, "Did anyone else hear that?" And they all just stare blankly at you and they say, "Heard what?" And then you explain there was a fire alarm that just rang and it was really loud and painful and they say, "Oh, it's just a fire alarm." They're all confused. They don't understand why such a sound might even bother you in the first place. That is a life in the day of an autistic person.
Think about all of the sounds that you interact with on a daily basis. You wake up in the morning, maybe you brush your teeth, you eat breakfast, you walk your dog, you drive. All of these activities could be extremely stressful for an autistic person because of all of the sounds associated with it.
When I wake up in the morning, what do I hear? I hear the bird singing, which is nice. I hear lawn mowers. I hear the sound of my fridge. I hear electricity from the lights around me. I hear subtle sounds of the toilet. I can even hear my dog wagging his tail in the other room. I can hear everything. Any—any sound, even the slightest little thing. Things that most people can't even hear, autistic people hear these. Not only do we hear these things, but we cannot filter them out.
These are just a few of the struggles that I deal with on a daily basis. Everywhere I go, everything I do, I have to bring equipment with me. Equipment to protect my ears, but more importantly, protect my brain. This equipment literally saves my life and allows me to survive. For 15 years, I carried earplugs in my pocket, not knowing why, not knowing I was autistic. I thought I just had really good hearing. I thought I do have good hearing, but that wasn't the fundamental issue. I thought that other people could have similar inputs to viewing the world as me.
And so when I discovered I was autistic, one of the first questions that was asked is, "Why is it important?"
Well, let me ask you:
Why is it important to know your neurotype?
Why is it important to know how your brain works?
Why is it important to live your best life?
Is it important to you to feel safe in your surroundings?
Is it important to you to form relationships with other people?
Is it important to you to understand the way that your mind works so that you can improve?
Is it important to you to have happier days, happier moments in your life?
Is it important to you to reduce pain and suffering?
Is it important to you to learn who you are fundamentally, your identity?
Certainly, my identity is not exclusively defined by my autism. However, it's a fundamental part of my identity. I wouldn't be who I am today if I were not autistic. I wouldn't be a musician, I wouldn't be a programmer, I wouldn't be a lot of things if I wasn't autistic. I'd probably be a lot like my sister, to be honest with you, which in itself is a cosmic irony; she's one of the most socially adept people on the planet.
That aside, why is it important? Why is it important to express your discomforts with something? Why is it important to recognize what makes you happy and what makes you unhappy? Why is it important to figure out the way that you can be happiest?
It's important so we can change the world. It's important so we can build a society of people who are accepting and not judgmental. It's important because I was severely bullied for 16 years not knowing why I was different from other people. It's important because I want to make friends, I want to keep friends, and I love hanging out with people. I love interacting with people, it's so much fun, and I'm actually quite rare in this aspect. Most autistic people don't like people, and it's no wonder they don't.
If you got no information from eye contact, and if you couldn't understand what people were thinking just from how they look or their eyes or their mouth or any of their facial expressions, you'd be confused too.
Honestly, I'm lucky that I actually enjoy any kind of social interaction. I think it's in large part having two wonderful parents who were so extremely social. They taught me that socializing can be fun, but a lot of people haven't had this experience, especially in autism.
What would it be like for you if you entered a room except you can't see anyone's faces? You look around at different people, trying to figure out who's who, except all of the faces are blank. Does that thought sound kind of terrifying? Because that is exactly what it feels like as an autistic person who cannot read verbal and nonverbal cues. You have to blindly search based on what people are saying, based on their tone of voice, and based on the language that they use.
It is a very restricted form of socialization. You have to just trust what people say is right a lot of times. And when it's not right, when there are these subtle undertones of either passive aggression or gaslighting or things like that, well, we don't pick up on that, and that's really tough to deal with. Why is it important to know how someone's talking to you? It's important if you value your happiness and stand by your boundaries. It's one of the most important things in the world.
Asking me why is it important to know I'm autistic is like asking why is it important to know who I am.
If you don't know who you are, what happens is you from an early age deal with wounds. And now everyone has these wounds, but for in autism this is amplified a lot, because especially the rejection wound in particular. From an early age, I didn't really know why I was different. I knew I was different. At some point I decided, "Well, if I'm an alien from outer space, I might as well make the most of it and just do what I want, do what makes me happy." But there was still a subconscious rejection wound association with this, because I didn't understand why I was different from other people. I didn't understand why I got certain looks. I didn't understand why people treated me in certain ways.
When you're an autistic person and you can't see the difference between a joy smile and a contempt smile, can you see how that would cause a lot of issues? It literally resulted in years of confusion, and I believe that confusion was preventable. That's why it's important. It's important to know what's going on around you, both for physical safety, for mental safety, for standing strong in your boundaries, for preventing abuse.
Honestly, I am so blessed and lucky that I have such a wonderful life, because not knowing what's going on around me, especially in the social sense, a lot of autistic people get roped into really bad things like that, because they don't know what's happening, they don't know when they're in danger, and they can't react to it very quickly.
That's one of the fundamental characteristics of autism: a delayed emotional pain processing. Most people, when they feel upset or happy or sad or angry or hungry or thirsty or whatever, they feel an instant response. In autism, it's delayed, and the amount it's delayed by depends on the person. The phrase "if you've met one autistic person, then you've met one autistic person" that is absolutely true. Everyone responds differently. However, there are a specific set of characteristics that come into play when we're talking about autism, and I will be getting into more of those characteristics throughout this podcast.
But I ask you to consider why. Why is it important to know your name? Why is it important to know who you are? Why is it important to remember things in your life? Why is it important to you to know what's going on in social scenarios? Why is it important to you to have a good working memory? Why is it important to you to be able to focus in your life? Why is it important to you to have a good reaction time? Why is it important to you to communicate with people in better ways? Why is it important to be able to be there for other people when they need it?
These are all types of things that autistic people struggle with. I ask you to honestly consider all of these questions in your own life. How would your life be different if you had bad reaction time? Maybe more car accidents. How would your life be different if you had terrible working memory?
I'm not asking these questions to go down a path of negativity. In fact, I believe that we are creators of our life experience. But it is absolutely crucial to validate the perspectives of what other people are going through, because not everyone lives life the same way that you do.
It's one of the most disappointing things in the world when you as a child try to tell people around you that you're struggling, but it's like they can't hear you. And they can't hear you because they don't have the same inputs that you do. They don't understand what you're going through. They don't understand that putting water at a sink at your face is like ripping hairs out one by one. And instead of being met with a sense of understanding—"I know it sucks, we're going to get through this and you can do it"—instead of that fundamental understanding, you get questions like:
"Why are you so sensitive?"
"Why are you like this?"
"Why don't you do this?"
"Why don't you understand?"
Or the worst phrase of them all: "You should know how to do this by now."
All of these phrases are common gaslighting ableist phrases that cause real issues in our neurodivergent society.
Now, maybe it's just my optimistic mind, but I really believe that people aren't aware of the harm that they are bringing to other people when they say things like this. I think they aren't aware because they don't understand how intense it is to live as an autistic person. I think that they are actually ignorant of what other people are going through, and they assume that other people have the same inputs that they do. They assume that other people can filter things out, or they assume that other people can read social situations.
These are all the types of assumptions I dealt with, and I can tell you a lot of people in my life simply didn't understand the experience. They weren't trying to gaslight, they weren't trying to harm me; in fact, the opposite was true, they were trying to help me in a lot of ways. But they didn't understand what I was going through.
I challenge the notion that there are four times as many autistic boys as girls. In fact, girls from a very early age are expected to learn how to mask, how to fit in, because society places these extremely high social expectations of how girls and women should behave. And so what happens to those girls and women? They're undiagnosed and they're lost. We feel like Outsiders when that happens.
What if someone noticed? Why didn't anyone notice? Why didn't anyone care? These are the kinds of thoughts that go through your mind as a diagnosed later-in-life autistic female. And then eventually you realize, well, a lot of people care about me, and you remember these things. But it's still—it's kind of hard. It's hard to deal with that. It's hard to all of a sudden realize all of the struggles you've had in your life are in a lot of ways fundamentally tied to ableism in society.
And so from the age of three, I learned how to mask, and I was scary good at it. So good at it, in fact, that I thought the mask was me. I didn't know how to tell the difference between a real smile and a fake smile, and that presented so many problems, both in understanding other people and their interactions, but even more importantly, understanding my own self-expression and the way that I wear my face. In fact, I was so good at it that it restricted my natural expression of the moment.
And the problem is that this area of study is simply not prioritized. There are people, real people out there suffering because they don't know who they are. And when you don't know who you are, you can't get the support you need, that can lead you into some very dangerous places.
I ask you to consider:
Why is it important to be safe in your life?
Why is it important to you to know your boundaries and stand by them?
And why is it important to always follow your personal values?
Why is it important to you to live in a world where you are free to be the fullest expression of yourself without judgment?
Why is it important to you to enter a room where you feel comfortable and balanced and free from physical pain?
Being in such an overstimulating environment for an autistic person, this is akin to physical pain. For a neurotypical, it would be like stepping on a tack and being unable to react in time before it starts bleeding and giving you significant pain and discomfort.
This is why autism awareness and understanding is so important.