J.R. Reed

@notweirdjustautistic | contributor
J.R. is an autism and neurodiversity self-advocate who speaks, writes, and podcasts. A Certified Cognitive Behavioral Therapist, he works with families of neurodivergent teens and young adults, as well as adults on the spectrum.

Why I Sleep With a Stuffed Animal as an Autistic Adult

Stuffed animals. Blankies. A favorite toy. When we’re young, these are all objects we may have enjoyed, and even dragged around with us wherever we went. They bring us comfort, security and familiarity. For many kids on the spectrum, these items also fulfill a sense of routine and order we naturally crave and need. But I’m going to let you in on a secret. Come closer because I don’t want this getting out to the masses. Are you ready for it? It’s not just kids that have objects in their life that represent security and peace. Some adults on the spectrum have an object that meets these same needs. Or, at least, this adult on the spectrum does. You see, I have a Black Panther teddy bear, and yes, I sleep with him at night. His name is T’Challa. Nearly four years ago I moved away from family, lifelong friends, as well as the tremendous sensory overload that is Los Angeles and Orange County. I left it all behind to move to a log cabin in a town of 4,000 in the Missouri Ozarks. I needed order and routine as I was building my new life, and so one Saturday, shortly after I arrived, I made the 45-minute journey to the closest Build-A-Bear. Just inside the entrance to the store, I found a Marvel display that had a black bear with T’Challa’s necklace embroidered onto it. I immediately knew that I had found what I was seeking. Being the complete dork that I can be, I grabbed an unstuffed bear, went to the stuffing machine, picked out a heart to put inside him, and created my new friend. Then I went and created a birth certificate, which I have hidden away somewhere in my house. I’ve slept with my Black Panther almost every night since. As I crawl into my bed, I grab the King of Wakanda off the pillow and get comfortable. He relaxes me, and when I have him at my side a feeling of calm comes over me, and it’s easier for me to fall asleep. He even goes with me when I travel. As I write this, I realize how weird all this must sound, but I don’t call it weird. I prefer quirky. Or eccentric. Over the course of my 55 years, I’ve learned that I really don’t care what others think of the things I do that they may find strange. I’m me, and I’m generally happy with who I am, so that’s really all that matters. So, here’s my question to all the autistic adults and family members of adults on the spectrum. Do you have something that brings a sense of normalcy and peace to your life? I’m sure I’m not the only one, but maybe I am. If you do, share with us what that is and what that object does for you. I’d like to know, and I’m sure others would as well.

Community Voices

How do you show emotion?

<p>How do you show emotion?</p>
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Realizing I Wasn't Alone After My Autism Diagnosis

For over 80% of my life, I felt like I was walking alone. Not in the religious sense, but alone in that I had no one around me who understood me. Especially me before I was diagnosed with Asperger’s. Let’s jump in the Way Back Machine (did anyone catch the “Sherman & Peabody” reference?) and look back a few years. When I was 10 years old, soccer first came to my city, and I loved it. But I sucked at it. Sucked in a big way. How big? My first coach told me early in the season, “I only play you half a game because I have to.” Well, that will do wonders for a kid’s self-esteem. But I kept playing and eventually got better. Not good enough to make my high school team, but I got better. I played club soccer and eventually got a scholarship to a tiny school with a coach who doubled as an economics teacher who took a two-week coaching course to get certified. That story is a huge train wreck for another day. Most Saturday and Sunday mornings during football season (European football season), you can usually find me on my couch with some hot tea and a little breakfast. Why am I up so early? It’s the English Premier League (EPL), baby! With a six-hour time difference between London and Kansas City, that means early afternoon games are early morning for me. Image provided by author. I love all things EPL. I love the fanbase for the different clubs, I love how they support their side, and I especially love how almost 46,000 at Anfield (the home stadium of Liverpool) come together to sing throughout the game. When I first got into the Premier League I loved Chelsea, Arsenal, Manchester United, Manchester City, and Liverpool. The tradition and the rivalries were something not to miss. They still aren’t. Then one day as Liverpool was coming onto the pitch (field) I noticed the track jackets the team was wearing. Across the back in bright letters was, “YOU’LL NEVER WALK ALONE.” I started researching that and found that was the official motto of the club, and, as you can see from above, it’s even on the gate as you enter the stadium. After my autism diagnosis, I felt alone. I didn’t know anyone who was autistic. At least I didn’t know anyone willing to admit they’re autistic. Eventually, I did meet people on the spectrum and began self-advocating for myself, and anyone else who needed a voice. As my work grew I met more and more people, and now I know that no matter what happens in life, I have people I can count on and I know that I’ll never walk alone. What’s it like for you? Do you feel like you’re walking alone? You’re not. Thousands of people like you are willing to walk with you and support you through your journey. If you feel like you’re alone, look for Facebook groups, Mighty support groups, or even hit up some of the self-advocates in your niche. They’re willing to help and to make sure no one walks alone. You will find someone. Tell us about your journey. Do you walk alone, do you walk with others? Are you struggling? Are you thriving? We want to know. Walk on, walk on with hope in your heart, and you’ll never walk alone.

Community Voices

I’m Being Dis-Abled. I’m not Disabled

Am I the only one getting dizzy from looking at the

picture?

Dis-abled. Disabled.

What’s the difference?

Well, the first one is a

verb and is something that is being done to us. We are

actively being disabled; usually by the environment we’re in.

The second is an adjective and is defined as, “(of a

person) having a physical or mental condition that limits movements, senses, or

activities.”

In short, one describes who a person is, while the other

talks about what is being done to a person.

I don’t know about you, but I have autism and I’m not

disabled.

I often find myself being dis-abled, but that doesn’t

mean I am disabled.

Let me give you an example.

Think of a shopping mall.

It’s crowded.

It’s noisy.

Traffic flows in random patterns.

Malls are brightly lit.

When I used to go to shopping malls I would always be

panicky, and felt like I didn’t understand what was going on. The environment

of the mall — all the sensory issues I just mentioned — are disabling us. We

are actively being disabled by an environment that doesn’t mesh with our brains

and who we are as people.

Now, if I were to enter a shopping mall that was dimly

lit with traffic patterns that make sense, fewer people and noise at a

comfortable level — Well, I’d still be autistic, but I wouldn’t be

disabled by the environment.

Does that make sense to you?

I can give you a real life

example of being disabled by my environment.

The day was December 12, 2021. My Las Vegas Raiders were

playing in Kansas City against their rivals, the Chiefs. Four years ago I moved

from Southern California to the Missouri Ozarks, three hours from K.C.

I moved into the heart of enemy territory, but I still

wear silver and black with something kind of resembling pride. It’s been a

tough year for the team, so I’m not at full Pride level right now.

My daughter and her husband bought me a ticket to go with

them to the game, which sounds cool on the surface. My daughter did a nice

thing for me. The only part is I was putting myself into Mall to the hundredth

power.

The quarter mile walk in a crowded tunnel was the first

highlight of my panic attack +++ day. I emerged from the tunnel and immediately

breathed in real air. While dodging colorful yet poorly thought-out barbs, we

started up the very long, crowded ramp. All the way to the top row in our

section.

Did I mention that I have a thing with heights? Because

I do.

Climbing to row 40 I got dizzy anytime I looked even

straight ahead, so I kept my head down and knew I was at the row when there was

nowhere left to walk.

What does being in that environment for a few hours due

to someone on the spectrum? I went back to the hotel, grabbed my stuff and

hauled my ass home.

As I walked through the front door I wanted to fall to the

ground and cry. I was in a safe environment where I wouldn’t have to endure any

more panic.  But I didn’t fall down and cry. Instead I went straight

to bed and woke up 16 hours later.

That’s the kind of toll that being in

disabling environments takes on us. The day I spoke in front of 1,500

disability advocates in the Missouri State Capitol, I slept 14 hours.

I knew exactly what I was walking into.  The panic attack

was a little more severe than I thought, but I knew what was going to happen

Admittedly, I put myself in the K.C. situation, but that

was the first birthday gift I’ve gotten from her in 7 years, so I didn’t want

to disappoint her. The fact that I went goes to show you the lengths some

of us with autism will go to for the people we love.

If you’re the loved one of an autistic person who puts

themselves in disabling situations, please remember to tell them how much you

appreciate the act. It will mean more than you know.

This is just one of the reasons I advocate for those of

us with autism. We deserve the opportunity to have environments where were

comfortable. People need to understand that what’s good for one (Neurotypicals)

isn’t always good for the other (Neurodivergent).

When you’re in situations cause you discomfort, remember

that there’s nothing wrong with you. You’re NOT a poorly formed Neurotypical,

you’re a perfectly created autistic person.

Explaining My Quirky Thought Processes and Autistic Brain

I woke up at 6:30 on Sunday morning. It most definitely wasn’t on purpose, and quite frankly I wasn’t happy about it. After laying there for a few more minutes, I decided to just give in, and I got out of bed. It was at this exact moment that my autism service dog, who just one second before was snoring in his bed, leaped past me, onto my bed, and promptly started snoring again. I’ll have whatever he’s having. Back to the story… Recently I started dating a beautiful woman who understands my quirks, as she has an adult daughter, who, like me, has Asperger’s. That really has very little to do with the story, but this is the path my brain is taking this morning, so I implore you to roll with it just one more paragraph, and together we’ll journey down the rabbit hole that is my mind. On a side note, I just noticed that my writing seems more formal than it normally is. I wonder if it has anything to do with waking up way too early and immediately cracking open a 1L bottle of Mountain Dew, which coincidentally, 90 minutes later, is empty. Into the rabbit hole. This morning she had to drive about an hour one way to pick someone up and bring them back to their town. I texted her this. “Text when you get back, so I know you’re alive and shit?” She responded with: “I will. LOL.” I love that my text made her LOL. I’m a 55-year-old male, so I will never text “LOL,” but it’s cool when others do it. I enjoy making people laugh (whether with me or at me) because it relaxes them. When they’re more relaxed I’m more relaxed and my panic attacks get a little better. From a 9, it probably goes down to 7. Also, scratch the “at me.” I don’t like when people laugh at me. I lived most of my adult life in Long Beach, CA. It’s an awesome city with a bit of everything. It’s also the home of Snoop Dog, Dre, and Sublime. Everyone in The LBC (as we call it) has a little gangster in them, just waiting to get out. Mine came out one night in the Anaheim Ducks press box. I was there working on an article for whoever was paying me that night. I can’t remember. Suddenly, the Doggfather comes out of the TV booth, where he had just been a guest on the broadcast. I happened to be getting something to drink and Snoop walked up to me. This is how our conversation went. J: ‘Supp, man? S: What up, little brother? What you up to? [Snoop is very tall] J: Just chillin’, then working. You know, I live in the LBC too. Pretty close to your old ‘hood, but I spent a few on the Westside. S: Welcome Home. I gotta get back to my seat. You keep it real. I turned to find 30 media members and one of the radio hosts staring at me, wondering what just happened. I scanned the crowd and said, “What? You ain’t never seen a couple of guys from The LBC rappin’ about life?” Once again, I digress from my story in a big way. So, after the beautiful woman texted me, I started thinking about her, and how to make her laugh in a good way. Most likely due to the fact that I graduated high school all the way back in 1984, I like to say both, “Peace out,” and, “Word to your mother.” I then started thinking of how I could do, “Peace out,” with emojis. I also decided that “Word to your mother,” was definitely impossible with emojis. I figured that if I could find either a peace sign or a hand with the correct fingers up, and a door that says EXIT, “Peace Out,” could be pulled off. Then I imagined using those emojis on someone who didn’t understand my thought process (probably every neurotypical and 2/3 of us on the spectrum). I had to explain it to them, and this is how it went down. Everything is read in the voice of beloved comedian Sam Kinison, who yelled. A lot. The first one is a peace sign. It was made popular by those damn hippies who refused to go to Vietnam. What does the second one look like to you? It’s a door. What do you do with an exit door? (pause) You go out! Peace. Out. Peace Out. While beginning to crawl back out of the rabbit hole, I decided to look for the aforementioned emojis, so I could see if they existed. I reached for my phone, decided I didn’t care at this exact moment whether they existed or not, and went for something to wash the Dew down with. Like bacon and eggs. By the way, this whole story happened in less than 60 seconds. That’s a minute of my life I’ll never get back, as well as three or four those who are still reading will never get back. My apologies. If you want to know how someone on the spectrum thinks, ask them. But be prepared for the response. As they said in “Ant-Man,” “You put in a dime in him, you gotta let the whole record play out. He’s like a human jukebox.” This is the one time I’ll allow you to laugh at me, because the way my brain works is pretty funny. I hope it brought a smile to your face because it cracked me up. Please feel free to post this on social media with the headline: Is this guy ****** up, or what?

Schools Need to Stop Labeling Our Children 'Sped Kids'

Label: noun. A classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive. Teachers, administrators, IEP Directors, and Directors of Special Education in our schools use a label on a daily basis that insults their students, and your kids. I don’t think they mean it to be insulting (or a label), but it is. That term is “sped kid,” a term used to describe a student who is in the special education classroom environment. To be fair, not all teachers, administrators, IEP Directors, and Directors of Special Education use that term. But many will let it roll off the tongue like, “and,” “the,” or, “or.” You may not think that sped kid is a label, but I ask you to stay with me on this for a moment and let me explain why it is exactly that. If at the end you don’t agree with me, I welcome your negative comments. When we put labels on people or groups of people, we’re judging them, and not in a nice way. Not that there’s a nice way to judge, but I think you get my point. Let me give you some examples of labels people will drop on a daily basis: Plus-Size. Is there a regular size? If there is, what is it? Just because a clothing store has a sign directing you to a certain area of the store doesn’t make it right Crazy. Are people “crazy,” or are they more likely, manic, experiencing depression, anxiety, schizophrenia, or a number of other actual medical diagnoses? Would you call a student in a traditional classroom setting “traditional kid,” or, “regular kid?” No. If not, why use sped kid? In the 10 years since I was diagnosed as having autism and that I’ve been self-advocating for the autistic community, I’ve never heard anyone employed by a school use either traditional or regular to describe a student. I’ve sat through enough IEP (Individualized Educational Program) meetings and sat on panels at conferences for those involved in special education, and I’ve yet to hear a student described as traditional or regular. Maybe I was in the bathroom when someone used those words and simply missed them, but I doubt it. Again, I want to say that I don’t believe the vast majority of those that use the term sped kid mean to insult or do harm to that student, but they do. And it does. Growing up, I was never labeled a sped kid because I was out of high school before autism as we know it today was being diagnosed and before special education as we know it today. But that doesn’t mean my teachers didn’t label me. Beginning in fifth grade, teachers called me “weird.” And “stupid.” And “lazy.” I can tell you for a fact that I’m not stupid. I was trying very hard to understand what the teachers were saying and did my best in the classroom, so I’m pretty sure lazy doesn’t apply either. Weird? Maybe. But I prefer “quirky.” I was also told that I wouldn’t be able to reach my potential, but last time I checked there’s no standard for grading an individual’s potential, so I’m not sure how they came to that conclusion. I’ve sat through enough IEP (Individualized Educational Program) meetings and sat on panels at conferences for those involved in special education, and I’ve yet to hear a student described as traditional or regular. Maybe I was in the bathroom when someone used those words and simply missed them, but I doubt it. My three descriptive words got stuck in my head, and I’ve replayed them thousands, if not hundreds of thousands of times over the years. Just like the “sped kids” will replay that term in their minds. To further complicate things, it’s not just the school staff that picks up on this term. Students in all types of classroom settings will hear their teachers and those in positions of authority use sped kid, and they’ll think it’s OK. But it’s not OK. Want to hear something that will really blow your mind? These same people have no problem dropping the sped kid bomb in front of the parents! The term is regularly used in IEP meetings. How regular? I sat through one meeting where it was used 23 times in three hours (I started tallying after the fourth time). It didn’t matter how many times I said, “Could you please not use that term? It’s derogatory and offensive,” they kept going. See how easy it can roll off the tongue? Educators are, well, educated. Surely, they can come up with a better term than sped kid. Or, just a thought, how about referring to the student as simply, John, Susan, Mark, or Carol? So, can we please stop labeling students as sped kids? If I haven’t said enough to convince you that the term is derogatory and offensive, then I’ve not done my job correctly. So, once again, I offer you the opportunity to leave your negative comments below. I’ll be sure to read them as soon as I’m finished being “weird,” “stupid,” and “lazy.”

Community Voices

Too many story ideas 😅

I've been meaning for so long to submit more stories but school has really been bogging me down and keeping me super busy. I have one I want to write about autism and facial expressions. Another I might write about a stigmatizing autism awareness post being passed around social media. I haven't ever written much about my ocd . I have a story mostly finished and almost ready to submit about reading and Autism. I'd love to write about mental health and how schools handle it. And of course there's always so much to say about COVID-19. Maybe I'll make a New Year's Resolution 😂
#OCD #AutismSpectrumDisorder #MentalHealth #COVID19

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The Masks I Wear Every Day as an Autistic Person

Masking as an autistic person. I honestly don’t even know where to begin. In the past 30 seconds, I’ve been at my keyboard, I’ve had five ideas, and they’re still coming. If you could see the level of frustration on my brow right now, you would know I’m not masking this. But there are times throughout our day that even the best of us, and the most careful not to mask, do. Before we get too deep into this, let’s take a quick look at what masking really is. First off, it’s an exhausting experience that takes a mental toll. Some of the more common forms of masking are: Forcing or faking eye contact during conversations. Imitating smiles and other facial expressions. You don’t understand the social protocol, so you mirror others. Hiding or minimizing personal interests. We each have a hobby or something that we’re really into. The less you talk, the less chance something about that topic would come out. Because, in our heads, we’ve already decided they’ll think it’s boring. Developing a go-to list of rehearsed responses to questions. Again, many of us are uncomfortable and afraid during social interaction.  We have a set of standard answers we can go to. It won’t always be the right answer, but at least it’s on point. Scripting conversations. Guilty! I’ve scripted 30-minute conversations in my head. It sucks hours out of your life and the convo goes amazing until the other person doesn’t answer the way you had it in your brain. I script Zoom meetings. How sad is that? Earlier I mentioned masking taking a mental toll. Pretending to be something you’re not can be exhausting. There’s one particular thing that I mask and I will not stop masking. Besides being on the spectrum, I’ve also got some social anxiety. Try and imagine the mental energy it takes to give a presentation to 1,500 live or 3,900 online while pretending that you’re not completely freaking out inside. After I spoke in front of 1,500 in the Rotunda in the Missouri State Capitol, I slept 18 hours. Not straight, but I was down and out of commission for close to 36 hours. I had a Zoom group of 3,900 that wasn’t as bad. I slept for about 12 hours. I even mask at home when no one’s around except my service dog. I start to feel a panic attack coming and I try to convince myself that everything’s fine. But it’s far from fine — I’m looking for the anxiety meds. After 418 words of talking about autistic masking, I hope you’ve come away with the knowledge that masking takes a toll on your mind and body. Sometimes serious ones. If you didn’t get that, I’ve done a poor job explaining, and I apologize. I believe masking is most difficult for those that try to mask the fact that they have autism. Basically, they’re lying to their friends, coworkers, and others in their life.  I’m not putting anyone down for masking the fact that they have autism, but I say be proud of who you are. We are not poorly formed neurotypicals. We are perfectly created autistic people. If you struggle in any way with masking, you are not alone. We all do it. I have autism tattoos on my forearms, and I’m proudly autistic. But yes, I, Mr. Self-Advocate, Speaker, and Podcaster do it almost every day as well. This is my story of masking. Let’s hear yours.

The Masks I Wear Every Day as an Autistic Person

Masking as an autistic person. I honestly don’t even know where to begin. In the past 30 seconds, I’ve been at my keyboard, I’ve had five ideas, and they’re still coming. If you could see the level of frustration on my brow right now, you would know I’m not masking this. But there are times throughout our day that even the best of us, and the most careful not to mask, do. Before we get too deep into this, let’s take a quick look at what masking really is. First off, it’s an exhausting experience that takes a mental toll. Some of the more common forms of masking are: Forcing or faking eye contact during conversations. Imitating smiles and other facial expressions. You don’t understand the social protocol, so you mirror others. Hiding or minimizing personal interests. We each have a hobby or something that we’re really into. The less you talk, the less chance something about that topic would come out. Because, in our heads, we’ve already decided they’ll think it’s boring. Developing a go-to list of rehearsed responses to questions. Again, many of us are uncomfortable and afraid during social interaction.  We have a set of standard answers we can go to. It won’t always be the right answer, but at least it’s on point. Scripting conversations. Guilty! I’ve scripted 30-minute conversations in my head. It sucks hours out of your life and the convo goes amazing until the other person doesn’t answer the way you had it in your brain. I script Zoom meetings. How sad is that? Earlier I mentioned masking taking a mental toll. Pretending to be something you’re not can be exhausting. There’s one particular thing that I mask and I will not stop masking. Besides being on the spectrum, I’ve also got some social anxiety. Try and imagine the mental energy it takes to give a presentation to 1,500 live or 3,900 online while pretending that you’re not completely freaking out inside. After I spoke in front of 1,500 in the Rotunda in the Missouri State Capitol, I slept 18 hours. Not straight, but I was down and out of commission for close to 36 hours. I had a Zoom group of 3,900 that wasn’t as bad. I slept for about 12 hours. I even mask at home when no one’s around except my service dog. I start to feel a panic attack coming and I try to convince myself that everything’s fine. But it’s far from fine — I’m looking for the anxiety meds. After 418 words of talking about autistic masking, I hope you’ve come away with the knowledge that masking takes a toll on your mind and body. Sometimes serious ones. If you didn’t get that, I’ve done a poor job explaining, and I apologize. I believe masking is most difficult for those that try to mask the fact that they have autism. Basically, they’re lying to their friends, coworkers, and others in their life.  I’m not putting anyone down for masking the fact that they have autism, but I say be proud of who you are. We are not poorly formed neurotypicals. We are perfectly created autistic people. If you struggle in any way with masking, you are not alone. We all do it. I have autism tattoos on my forearms, and I’m proudly autistic. But yes, I, Mr. Self-Advocate, Speaker, and Podcaster do it almost every day as well. This is my story of masking. Let’s hear yours.

The Masks I Wear Every Day as an Autistic Person

Masking as an autistic person. I honestly don’t even know where to begin. In the past 30 seconds, I’ve been at my keyboard, I’ve had five ideas, and they’re still coming. If you could see the level of frustration on my brow right now, you would know I’m not masking this. But there are times throughout our day that even the best of us, and the most careful not to mask, do. Before we get too deep into this, let’s take a quick look at what masking really is. First off, it’s an exhausting experience that takes a mental toll. Some of the more common forms of masking are: Forcing or faking eye contact during conversations. Imitating smiles and other facial expressions. You don’t understand the social protocol, so you mirror others. Hiding or minimizing personal interests. We each have a hobby or something that we’re really into. The less you talk, the less chance something about that topic would come out. Because, in our heads, we’ve already decided they’ll think it’s boring. Developing a go-to list of rehearsed responses to questions. Again, many of us are uncomfortable and afraid during social interaction.  We have a set of standard answers we can go to. It won’t always be the right answer, but at least it’s on point. Scripting conversations. Guilty! I’ve scripted 30-minute conversations in my head. It sucks hours out of your life and the convo goes amazing until the other person doesn’t answer the way you had it in your brain. I script Zoom meetings. How sad is that? Earlier I mentioned masking taking a mental toll. Pretending to be something you’re not can be exhausting. There’s one particular thing that I mask and I will not stop masking. Besides being on the spectrum, I’ve also got some social anxiety. Try and imagine the mental energy it takes to give a presentation to 1,500 live or 3,900 online while pretending that you’re not completely freaking out inside. After I spoke in front of 1,500 in the Rotunda in the Missouri State Capitol, I slept 18 hours. Not straight, but I was down and out of commission for close to 36 hours. I had a Zoom group of 3,900 that wasn’t as bad. I slept for about 12 hours. I even mask at home when no one’s around except my service dog. I start to feel a panic attack coming and I try to convince myself that everything’s fine. But it’s far from fine — I’m looking for the anxiety meds. After 418 words of talking about autistic masking, I hope you’ve come away with the knowledge that masking takes a toll on your mind and body. Sometimes serious ones. If you didn’t get that, I’ve done a poor job explaining, and I apologize. I believe masking is most difficult for those that try to mask the fact that they have autism. Basically, they’re lying to their friends, coworkers, and others in their life.  I’m not putting anyone down for masking the fact that they have autism, but I say be proud of who you are. We are not poorly formed neurotypicals. We are perfectly created autistic people. If you struggle in any way with masking, you are not alone. We all do it. I have autism tattoos on my forearms, and I’m proudly autistic. But yes, I, Mr. Self-Advocate, Speaker, and Podcaster do it almost every day as well. This is my story of masking. Let’s hear yours.