I am typically reminded several times a week that I am autistic. What I mean by that is things are constantly happening in my life that I know wouldn't happen if I was allistic, or if I wasn't autistic. When these things happen to me, I tend to say in my head, "[This particular thing] happened because I'm autistic." & then I feel all sad & mopey on the inside. I really wish it wasn't this way because it's part of what makes being autistic feel so disabling. But, I blog about my life. And this is the type of thing I deal with every day. This my real life that I'm sharing with you, so here we go. This is the story of how purchasing a new winter coat reminded me that I am in fact, autistic. All winter long, the threads in my winter coat have been repeatedly breaking, leaving large gaping holes behind. Rather than continuously repairing the damage, I decided that it was time for a new coat. This coat is very old, anyway. The best time to purchase a winter coat is at the end of the season, when everything is on clearance, so now is the PERFECT time for a new one. The task of purchasing a new coat that I will wear almost daily for almost half the year is overwhelming to say the least, especially for an autistic person such as myself. These are the three main reasons why:
The Return Process:
This is where it gets really complicated. I purchased these two coats from Walmart's online marketplace. So, it wasn't actually Walmart who I bought the coats from, but I could return it there. I kept the deep purple coat in my car for about a week & a half, so that I wouldn't have to remember about it on the day I actually needed it. Walmart is a close drive for me, but one of my dog walking clients lives less than two miles from Walmart, so I wanted to return this coat on a day that I didn't have to go anywhere after walking this particular client's dog. It took twelve days before I had time to go to Walmart after walking this client's dog. My entire life is based around doing things in the most efficient manner, so that whatever I do outside of my home takes up the least amount of time possible. Because of my depleted energy levels, as well as my executive function difficulties, doing all my errands on a single day when I'm already in the area for another reason (such as visiting a client's dog or cat) is what works best for me. Anyway, after parking my car, I took the deep purple coat (still in the bag it was shipped in), into Walmart & found the customer service desk. The older woman who helped me was incredibly grouchy. Right away, she complained about the size of the coat (what winter coat isn't large?!) & to be completely honest, I was pretty intimidated & frightened by her. I showed her the barcode on my phone that was connected to the coat I wanted to return & she scanned it. But, I was really confused because she kept making comments about how the coat I was returning wasn't red. I never purchased or received any red coats, so I had no idea what she was talking about. I was scared of her though, so I just let her do her thing & I didn't speak up. She printed out a receipt with the coat's tracking number on it & the amount that I would be refunded. I looked the receipt over as I was walking away because I never trust that people are doing their jobs correctly. I was glad that I checked because the refund she issued me was for the incorrect amount. The coat I was returning was $5 more than the coat I was keeping. And the refund I received was for the coat that was at home! I went back to the customer service counter to ask her about it & she told me that the coat I gave her wasn't red. It was then that I realized why she had been talking about a red coat. 💡 The packing slip inside the shipping bag said that I purchased a red coat & a purple coat. Red wasn't even a color option for the coat I had purchased. I was SO confused by this! ⁉️ I had never even looked at the packing slip because I received exactly what I ordered. The woman returned the purple coat (which was at home) because the coat I gave her wasn't red. When I showed her the picture of the coat on my phone with the price I paid for it, she yelled at me & told me I should've shown her that from the very beginning. I thought I did though because I showed her the barcode, which she scanned & I would think that the barcode would tell the customer service person which coat I was returning & how much to refund. ⁉️⁉️ The only reason I didn't question the customer service woman originally was because I was intimidated & scared. I have lived my entire life having to endure pervasive mistreatment from everyone around me & I am quite certain that it has caused post-traumatic stress disorder, something that more than 40% of autistic individuals struggle with. The reason I didn't speak up was because I was simply autistic & afraid. In the end, a much kinder & younger woman (who was also working behind the customer service desk) called the seller I had purchased the coats from to get the remaining $5 refunded. Going to the store to return something is such a simple task, but being autistic turned it into such a big headache. And it was all because the person helping me wasn't kind. This is something that could've been avoided completely if the person helping me had exhibited kindness & had not been so intimidating. This is the type of thing that I deal with on a daily basis because I am living with autism. For those of you who are also autistic, I hope this story helps you feel less alone. And for those of you who are allistic, I hope this story helps illustrate how difficult it is to be an autistic woman living in a neurotypical world. 💙
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Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
I had a very interesting conversation with my dad about why I've never been successful in the workplace that I'd like to tell you about. I had been sitting at the coffee table, filling out paperwork about my disabilities all afternoon & the last question stumped me: Use this space to write any additional information about why you cannot work. I had put SO much information on all of the other pages of that form explaining why I cannot work that I simply felt like I didn't have anything else to add unless I repeated myself. So, I asked my dad, "Why do you think I cannot work? I want to see if you have any other ideas that I haven't thought of already." My dad has a better understanding of me than most people do because we're so similar to each other. He took a moment to think & then said, "My impression of it is that it's because you can't handle criticism. And because of that, you work ineffectively, which then causes you to get fired." I had never thought of it that way before, but what my dad said was absolutely true. I can't handle criticism. Before we go any further though, I'd like to clarify something. It isn't that I CAN'T work because truthfully, depending on the specifics of the particular job, I CAN work. What I can't do is work for someone else, in the traditional sense. If it's a job where someone is supervising me, that's the problem. Interactions with supervisors are the biggest issue for me in the workplace. While I had never thought of it like how my dad summed it up before, supervisors criticize, whether they're doing it now or they're going to do it in the future. That's what makes me shutdown around them. Interacting with someone who is either actively criticizing me or will criticize me at some point in time causes my brain to completely shutdown. This makes it impossible for me to function, as terrible as that sounds. Total comfort & feeling like I'm not going to be criticized or judged is key in order for me to not shut down. Shutting down at work just doesn't work, supervisors don't know how to interact with me in a way that doesn't cause me to shutdown, & that's why I can't work. This blog post is about what you need to know before criticizing an autistic person, although chances are, if you're reading this, you have already done it at some point in your life. I'm gonna throw in some info about how it feels to be criticized as an autistic woman, too. Why We're So Sensitive To Criticism: Bad Experiences With Criticism: Bullying & being left out are forms of criticism. Every autistic person you talk to will have something to tell you about experiences with those two things. The teasing, the mocking, the name-calling, the fact that no one wanted to be our friend, & MORE. Both bullying & leaving us out does real harm that affects us, autistic adults, many years later. It still affects me today more than I would like to admit. The bullying I endured when I was seven all the way through my early twenties did real harm & it still haunts me to this day. As a fresh college graduate & as an adult, I was constantly criticized by my parents, as well as by other caring family members. I personally believe that Asian & Jewish families expect more from their children than all other ethnicities do. Think about the number of Asian & Jewish doctors & scientists that are out there! Because I have a Chinese mother & a Jewish father, my parents unknowingly set unrealistic expectations for me from a very young age. Once my college graduation was upon me, I quickly discovered that I couldn't live up to those expectations, but I didn't understand why. Being constantly asked if I was happy with my life (I wasn't & I'm still not) & if I worry about what will happen to me when my parents die (I did & I still do) hurt immensely. Not only that, I had no explanation & no understanding of why I couldn't get to the place I needed to be in order to meet their expectations. Living almost thirty-two years of my life feeling like I was a disappointment to my family was extraordinarily difficult. It was even more difficult that I wasn't only disappointing my family, but I was also disappointing myself because I had the same expectations of myself that my parents had of me. I certainly don't blame my parents for any of this because I know that if they had known that I was autistic all this time, those expectations wouldn't have been put on me like they were. However, feeling like I was always falling short & I was never good enough put such a damaging amount of pressure on me for so long that it still affects me to this day to the point where sometimes I forget that their expectations of me have changed since my autism diagnosis. The Criticism Is Constant: I remember being constantly criticized for my behavior ever since I was a young child. Many other autistics have had the same experiences as I have had with this. "Look at me while I'm talking!" "Why do you have that grimace on your face?" "Why are you smiling? That's not funny!" "You shouldn't have said that. You should've said this." "Your face looks funny. Are you okay?" All of the above things have been said to me numerous times throughout my life. Unfortunately, an autism diagnosis hasn't stopped these types of criticisms from happening. My behavior & every move I make have been criticized so much that I simply can't handle any more of it. We're Stressed:
Us autistic people live very high-stress lives. Things that seem so minuscule to you really stress us out. We're sensitive to a lot of things like light, noise, our physical environment, & emotions. For example, I remember a time where my mom insisted that I attend a neighborhood Christmas party. I really didn't want to go because I was expecting to watch Christmas movies in my pajamas that night & now I had to be dressed & socialize with other people. I wouldn't have had such a problem with this party if it wasn't for the fact that it came on suddenly & I had no time to mentally prepare for the fact that I had to attend this party that night. I was in college at the time, so I was definitely old enough to stay home. It just wasn't okay with my mom. The sudden change in plans caused me stress & displeasure & when I expressed that to my parents, I was criticized for how antisocial I was being. This resulted in a complete meltdown. I felt like no one cared about me that night because no one stopped to listen to my thoughts or feelings. When I eventually made it to the party, I ended up standing like a statue against a wall for the few hours we were there because the criticism I received just prior to arriving at the party made it so that I didn't have the emotional capacity to socialize with anyone. We Have Low Self-Esteem: Many autistic people, myself included, suffer from low self-esteem. This is often the result of external factors, like bullying & being left out when we were younger (discussed in more detail above↑). When we have low perceptions of ourselves, it makes us more sensitive to criticism. Low self-esteem also makes us unable to understand or interpret criticism. Even when criticism is communicated with the best of intentions, ALL criticism can make us extremely anxious, which has long-lasting effects on us, crushing our self-esteem even more. Every single time I'm criticized, I feel like I can't do anything right. In fact, I feel like that regardless of whether or not I'm criticized. I know that this is because of how much I have been criticized during the course of my life. Many other autistic people feel this way, too. Our Feelings Are Often Dismissed: I have gone through my entire life feeling like my feelings don't matter. I have always felt like when I speak up, my thoughts & feelings are brushed to the side. I've been talked over & ignored more times than I can count. This not only makes us extra sensitive to criticism, but it makes us think we're being criticized when we're not being criticized at all. What Is Rejection Sensitive Dysphoria?: Although not a clinical diagnosis, rejection sensitive dysphoria, or RSD, is when perceived rejection or failure causes so much intense emotional pain that it becomes very difficult for a person to cope with his or her feelings. Autism & RSD: Many autistic people struggle with RSD & I certainly believe I am one of them. However, this isn't an issue for every autistic person. Increased rejection & punishment for not meeting neurotypical standards puts autistic people at higher risk for experiencing RSD. Also, since autistic people often have different sensory & perceptual experiences than allistic, or non-autistic people, they often experience more intense emotions. Autistic people with strong emotional sensitivity tend to experience social & interpersonal rejection stronger than allistic people, which can increase rejection sensitivity. Complications Of RSD For Autistic People: While most people do not enjoy being rejected or criticized (I mean, who would?), RSD goes beyond simply disliking rejection. RSD is so intensely emotional & can even be physically painful. The desire to avoid this unbearable pain & discomfort often leads to increased masking behaviors, which puts the autistic person at higher risk for burnout. Additionally, RSD can trigger mental health issues in autistic people including anxiety, depression, & eating disorders. So, before you criticize an autistic person, remember that while no one likes to be criticized, criticism is often much, MUCH harder for us to take than it is for the allistic population to take. And if your criticism causes us to shut down or to act unconventionally, please treat us with love, care, & understanding. It's what we need most of all. 💙 I applied for disability this past December, shortly after I received my autism diagnosis. Now, the disability process is a very lengthy one. It typically takes just under a year for a decision to be made. Ever since I first applied, I have periodically been checking the status of my application via the Social Security Administration website. And I can now see that we're getting closer & closer to my application being fully processed, which brings me to what this post is about. My neighbor's son is just a few years younger than me & is also autistic. Knowing that my neighbor likely has a much greater understanding of my struggles than most people, I have gone to her for advice a few times. My mom & I had a very interesting conversation with her a couple evenings ago. Something I've never thought of until now was brought up, which I'd like to tell you about. My neighbor's advice to my mom & me was that when we're talking to people or filling out paperwork related to autism services or benefits (like disability or supplemental income), we have to remember to put the emphasis on what I CAN'T do rather than what I CAN do. She told us that she has a difficult time talking about what her autistic son CAN'T do & instinctively puts the emphasis on what he CAN do. Both my mom & I were very confused by this statement. My mom even asked my neighbor to clarify what she meant. When my neighbor kept going on & on about this, I realized that she probably had no idea that this wasn't a problem at all for me, so I interrupted her. I told her that I have the exact opposite problem. I have a difficult time talking about what I CAN do & always put the emphasis on what I CAN'T do. "Oh, so you have the opposite problem," my neighbor said in agreement. When I took a moment to pause & reflect on this conversation, I came to a realization. The difference in perspective between me & my neighbor is simply when the autism diagnosis was received. Her son was diagnosed with autism as a young child, while I was diagnosed with autism well into adulthood.
While I'm not a mother myself, I can imagine that as a mother, my neighbor wants to think positively for her son. Her positivity will then positively impact her son by making him feel loved & capable of doing whatever he wants to do with his life. For me, my autism diagnosis came from such a negative place. In fact, I believe that I wouldn't have received a diagnosis at all at this point in my life if I was someone who put the emphasis on what I CAN do. After I received my autism diagnosis, I've found myself constantly telling autism resource people about everything I CAN'T do. But, I can't remember telling anyone about what I CAN do. Sometimes, it has even led to heated, ugly arguments that have left me feeling more misunderstood, invalidated, & defeated than ever before. For example, I:
While yes, this is an extremely negative way of thinking, it is important to remember that if I didn't have such a long list of things I CAN'T do, I wouldn't be autistic. And I wouldn't have spent my entire life struggling & wondering why I am unable to get to where I want to be in life. It may not look like it from the outside, but autism is an invisible disability that really hinders what things I am capable of doing & how much of it can be done in a day. Ever since I was a child, I've had very specific limits, which include interacting with people, physical activity, & more. I've always known that surpassing those limits would cause trouble, but identifying those limits & advocating for myself wasn’t something I learned to do until I was in my upper teens. Living life in a constant spoon deficit is no easy feat, but I'm taking it day by day & trying my very best. I'd like to end this post by reiterating that while many people impacted by autism focus on what they or their loved one CAN do, it’s the CAN'Ts that are important to me. Every person is different, autistic or allistic, & we all have different perspectives on our abilities & on the life we're living. And that is perfectly normal & okay. We're all doing our very best & we're doing what works for us & that’s what matters most of all. 💙 As my eighth grade school year neared its end, there was so much excitement & chatter among my classmates about high school. High school. Now those were two words I never wanted to hear. If you had asked me about anything having to do with high school that year, one of two things would have happened:
Throughout my life, each transition that I've experienced was harder than the one before. Now, I know why. Autism. We're known for having a tough time with change. Middle school wasn't a time that I would ever want to relive (I mean, who would?), but high school? Now that was terrifying. Eighth grade was the first time I ever had a male main subject teacher. My science & homeroom teacher, Gil, really took a liking to me. He gave me special treatment & gave me privileges that no one else in the class was allowed to have. He even intervened in situations where I didn't think it was necessary. He simply wanted to be there to take care of me. Being someone who didn't (& still doesn't) trust men, I considered myself pretty lucky to have had Gil be my first experience with a male teacher. He's retired now, but I've been able to reach out to him a few times since my college graduation to thank him for being so good to me. Anyway, Gil knew that I was nervous about going to high school, so he met my parents, my grandparents, & me one day over spring break to give us a personal tour. He used to work at the high school, so he knew it pretty well. My town was growing so fast, that the eighth grade needed to be moved to the high school for several years because there was no longer room for it in the middle school. By the time I entered eighth grade though, the grade had moved back to where it was supposed to be. I'm not sure how much that tour helped my transition to high school because just the idea of going to high school was SO upsetting. I knew I had no other choice because staying in eighth grade forever & skipping high school weren't viable options either. Having that love, care, & extra time from a teacher who could've been spending his spring break doing so many other things meant so much to my family & me. My First Day Of High School: Now, this is something I hate to admit, but on the first day of high school, as I was walking to the bus stop, there were big, ugly, fat tears that wouldn't stop forming. Like many parents, ever since I started school, my mom has always taken a picture of me on the first day. I couldn't pull myself together enough to take a picture that morning, so my mom took a picture of me after school instead. To this day, when I look at that picture, all I see is a sad, scared girl hidden behind the smile on her face. See below↓. On that particular morning, my next-door neighbor was looking out her front door at me walking to the bus stop, full of excitement for me. My neighbor was someone I have been very close to ever since I was a toddler, but I couldn't manage to turn to look at her for even a brief second because my face was so streaked with tears. Luckily, my mom could be my voice that morning, providing an explanation for my strange behavior which was completely embarrassing. What Exactly Was SO Terrifying?: There were three main things that were upsetting about going to high school.
I know that this is a very vulnerable & heartbreaking post, especially for those who know me personally. Please know that everything written in this post was written with my heart & soul & is absolutely true. School is very, very difficult for us autistics & my experiences are illustrations of why this may be. Some time ago, my parents' financial guy had made an offer to assist my brother & I if we ever wanted it. My mom took me to see him today because for awhile now, I've had concerns about having too much money in the bank. The reason why? I'm in my thirties now & I have barely spent any money ever since I started earning it when I was a teenager. In simpler terms, I'm really, really, really good at saving money. This Is Why I'm Such A Money Saver: I cannot depend on myself to make money. I became very aware when I was looking for my first "real" job after college that no one wanted to hire me. I don't blame them because if I was someone who was in the hiring position, I wouldn't want to hire myself either, as sad as that is to admit. I really, really, REALLY struggled with this. I was raised in an Asian & a Jewish household. I believe that those two backgrounds expect more from their children than any other background does. I even struggled emotionally that I went to a lowly state school rather than a college that was more highly respected. How many high school seniors get into every single one of the colleges they apply to? 🙋🏻♀️ I didn't have any reach schools & I didn't take any AP classes in high school because I wouldn't have been able to handle the pressure of either one of those things. Ever since I graduated from college ten years ago, I have had an intense amount of pressure put on me by my family & by myself to achieve things that were just not attainable. That really ate away at my self-esteem. My self-esteem wasn't good before this, but this made it a whole lot worse. For many years, my parents would say to me, "Aren't you scared about what's gonna happen to you when we die? Don't you want to make a living?" And for years, I avoided answering that question because I had no answer that would be acceptable to them, no answer that would be acceptable to me. The truth was, I was petrified & I still am. But, until I received my autism diagnosis last year, I had no understanding about why I was never able to reach the types of goals I went to college to achieve, why I am a college-educated person who can't support myself. It was EXTRAORDINARILY frustrating. College & Financial Independence: Achieving financial independence is what everyone strives for & it is a big reason why many high school graduates go on to college, isn't it? Well, let me tell you this. A college education doesn't buy you financial independence. It just doesn't. What a college education buys you is simply that: a college education. Yes, many jobs require a college degree & having a college degree can get you a higher salary than you would've had without one, but having a college degree doesn't get you a job. That was one of the first lessons I learned when my college commencement was upon me. I was an art & graphic design major, so my mom suggested that I call several design firms in the Boston area to see if they were hiring. Trying to be a good daughter, I unhappily obliged. I've always had problems talking to people & making phone calls to people I don't know personally causes anxiety on such a high level that I can't put it into words. None of the design firms I called were hiring, which surprisingly gave me great relief. This was something I never expected, but I knew it was because of the feelings of panic I endured when I thought about life after college. My college experience was absolutely terrible, so the whole four years I was there, I kept thinking that things would get better once I graduated. Well, they didn't. I believe that in general, companies want to hire people who:
I Wasn't Made For The Corporate World!:
Both corporate environments & supervisors, whether I'm interviewing or working at a job, cause me to freeze, become nonverbal, get tongue-tied, panic, act in unexpected ways, & a plethora of other things that give a bad impression. Whenever I try to explain this to people, they just don't get it. Most people work because they have to, not because they want to & they do what they have to do to make a living. But, if all of those things have always happened to me when I'm either interviewing for a job or working for a supervisor, how is that going to work? Job Interview Experiences: I have been told so many times to just practice, practice, practice. But, I believe that in this instance, practice isn't going to help. There's no reasoning with anxiety & until I have reached a specific required comfort level with the person who is interviewing me (something that both takes a very, very long time & isn't possible), everything I've hypothetically practiced will just go out the window at the time I need it most. Plus, that's not even taking into consideration that if I don't actually want the job, I'm not going to be able to convince someone else that I want the job. Now, if you're thinking, "How could you not want the job?!" Wanting the job & wanting money are two totally different things. I have never interviewed for a job that I wanted because every job that I've ever interviewed for was a job that I believed I was better off without. Experiences In The Workforce: I strongly believe that I have never been a good employee, so that in turn makes me not a good employee. I know now that much of this has to do with being an unawarely autistic employee. I have been told the following things from various supervisors:
What I Need In A Job: If I'm not able to be in control of when, how, where, for who, & with who I'm working all of the time, it's not going to work for me. I know that chances are, unless you're self-employed, you don't control all of those things. For an autistic person, not having control of all or at least the most important of those things all the time will cause autistic burnout. This is why many autistic people:
Autistic Burnout Is: The complete physical & mental exhaustion that autistic people experience from trying to live in a neurotypical world &/or from masking their autistic traits too often. This is often a problem for autistic people in the workplace & is often why they often don't have enough sick time or their job performance might be lower than it should be. 💔💔 This is the heartbreaking reality for many autistic people out there & this is why we need more support. 💔💔 You may have heard of it, or maybe you haven't, but let's talk about what Spoon Theory is & how it applies to autistics. If you've ever heard someone exclaim, "I'm out of spoons!"; you might've been super confused. And no, (s)he didn't run out of silverware. It was Spoon Theory that (s)he was referring to. Spoonies, as we call ourselves, are people living with chronic illnesses, autism, mental health issues, terminal illnesses, disabilities, & more who use this theory to give their healthy family & friends a glimpse of what it's like to be in our shoes. What Exactly Is Spoon Theory?: Now, it's important to remember that I did not create Spoon Theory & I'm no Spoon Theory expert. I'm simply an autistic woman living with persistent, lifelong mental health issues who has benefited greatly from having a simple & concise way to explain my energy & ability levels on any given day. The Origin Of Spoon Theory: First, I highly encourage you to read the entire origin story of Spoon Theory, but here is Spoon Theory in a nutshell: Spoon Theory was originally created by Christine Miserandino, a woman with lupus. She & her best friend were at a diner late one night when her friend asked her what it was like to live with lupus. And that's when Spoon Theory was born. Christine handed her friend a collection of spoons as a concrete way to illustrate what it was like to live a day with lupus. "I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted." Every chronically ill, autistic, mentally ill, terminally ill, & disabled person begins each day with a limited number of spoons. The number of spoons most spoonies begin the day with is twelve because that's how many spoons Christine handed her friend that night. And every task that you do throughout the day takes up one or more of your spoons. How many spoons each task takes up depends on how difficult the task is for you to do. Depending on the person & his or her illness or disability, certain activities may allow spoons to be replenished. I'll talk more about that later on in this blog post. Remember that an activity such as getting ready for work has to be broken down into smaller steps. Getting ready for & getting to work usually contain all or most of the following steps for most people:
Once a spoonie runs out of spoons, (s)he has no energy left for the rest of the day, so we have to make choices about how we're going to use our precious spoons. For example, are you going to shower or eat breakfast today? If you go to the grocery store after work today, will you have enough spoons left to cook? Healthy people have the luxury of not needing to make these choices because they wake up each day with an infinite number of spoons. While the Spoon Theory was originated by a woman with lupus, it applies to so many other illnesses & disabilities out there as well. How Does Spoon Theory Apply To Autistics?: Autistic people wake up each day with a limited number of spoons. Let's continue to use the number twelve. Sometimes the number of spoons we wake up with can be lower than what is typical. For example, if we had a meltdown yesterday or if we didn't sleep well, we might hypothetically start the day with eight spoons, no spoons, or a negative number of spoons rather than the typical twelve. We have to plan our days very carefully in order to conserve our spoons. We face unique struggles because we live in a world that wasn't built for us. Navigating a neurotypical world uses up our spoons at an astronomical rate. The tasks that I find to take up the most amount of spoons tend to involve interaction with people. Also, because of my vestibular sensitivities, I live my life in fear of germs & illness, so tasks that involve cleaning or being in close contact with people I don't know also take up a lot of spoons. The below image outlines how many spoons I use up for many of the typical tasks in my daily life (although some tasks are hypothetical). As you can see from the below image, many of us, myself included, consistently run on a spoon deficit. It would be impossible for me to only use twelve spoons in a day. I try to conserve my spoons as much as I can, but so many daily tasks take up such a significant number of spoons that spoon conservation is impossible. This is why autistic burnout & meltdowns are so common in the autism community. We are quite simply out of spoons. Most days, I wake up feeling like I am out of spoons before I'm even out of bed because the limited number of spoons I am given each day just isn't enough. When you've run out of spoons every single day of your life, it really takes a toll on you. Because I am consistently spoon-deficient, I try to avoid the majority of tasks that take up five & six spoons. The only task in this group of tasks that I passionately love doing is taking care of my grandfather. Autistic people do not handle stress well & because caregiving is very stressful, it takes up a lot of spoons. However, it also can be very rewarding & it gives me precious time with my grandfather, which I love. Spoon Replenishment: While I am consistently running on a spoon deficit, I feel lucky that sometimes, my spoons can be replenished. This isn't the case with all spoonies. The below image outlines how I personally experience spoon replenishment. Certain activities are much more effective at accomplishing this than other activities. Sleep is something that helps replenish spoons for many spoonies, but that isn't something that helps me. I have many other things that replenish my spoons though, which I am grateful for. Because my spoons are used up much more quickly than they are replenished, this only helps my spoon deficit ever so slightly. Why Does Spoon Theory Help?: I love Spoon Theory because it gives our community a common language that explains our daily energy levels in a simple way. It also helps our healthy & neurotypical family & friends understand what their ill or disabled family & friends are facing in a concrete way. Sometimes, it may look to others that we are lazy when that isn't the case at all. We are simply out of spoons. Without this language & understanding, many of us would be using more of our precious energy than we had left explaining to our family & friends that we are all out of energy. (How ironic is that?!) If you’re new to Spoon Theory, I hope that this explanation helps you to see the struggles that us spoonies face on a daily basis in a new way. And if you know me on a personal level, I hope this helps you understand me better, too. 💙 The past week has been incredibly stressful for me. A little over a week ago, one of my dogs woke up from his night sleep covered in his own urine. This is the first time he has ever done that in his lifetime. He's never even done that when he was a tiny puppy, prior to being fully potty-trained. He's always warm (dogs' body temperatures are warmer than humans' body temperatures), but this particular morning, he felt warmer than warm. I put him in the bath tub while I called his vet & figured out what to do with him. Unfortunately, his vet wasn't able to get us in until 7:20 that evening. I wiped him down, but didn't give him a full bath because he hadn't quite had his flea & tick topical on for long enough before being able to be bathed. Plus, with him needing to go to the vet that evening & me being the germaphobe that I am, I wanted to bathe him after he came home from the vet rather than beforehand. I have to tell you, that day was the longest day ever. My little guy; who will be turning ten in a week; is typically such a lively, happy, energetic little man; but the life was completely sucked out of him. I had never seen him this lethargic & sickly before & that was quite scary & stressful. He didn’t pick up his head if someone walked in or if his name was called. But, it was even more alarming that he didn’t want belly rubs. That boy is the king of belly rubs. Even with the number of dogs I've cared for, I've never met a dog who loves belly rubs more than my sweet Teddy. When it was finally time for Teddy’s vet appointment, my mom & I both took him in. Based on his appearance as well as my observations that I shared with the vet, she thought that due to the area we live in, he probably had a tick-borne illness. He was brought back for a urine test & couple of blood tests (one of which was to check for tick-borne illnesses). Teddy tested positive for two out of the three tick-borne illnesses that he was tested for. Specifically, ehrlichiosis & anaplasmosis. I am super religious about combing my boys & checking them for ticks every single night. Plus, them being all white helps tremendously with being able to easily spot something like a tick on them. Not only that; I apply a flea, tick, & mosquito killer & repellent topical on them twice a month during the warmer months of the year; & I don’t allow them to romp around in tall grass, in wooded areas, & in all other places where ticks are likely to be. I did everything right & I never saw any ticks on him. The first day that I really thought he was almost all better was yesterday (exactly one week since symptoms started), but until I saw major improvements, I was stressed to the max. That would stress anyone out, autistic or not. With that in mind, let’s take a moment to talk about stress, how neurotypical people deal with it, how autistic people deal with it, & how I deal with it. What Is Stress?:
As explained by the World Health Organization: Stress can be defined as a state of worry or mental tension caused by a difficult situation. Stress is a natural human response that prompts us to address challenges and threats in our lives. Not everything that we experience that causes stress is negative. Here are some examples of negative & positive stressors. Negative Stressors:
Positive Stressors:
The Impacts Of Different Intensities Of Stress: Mild Stress: This type of stress typically motivates the individual to work as hard as (s)he can to achieve some type of end goal. Severe Stress: This type of stress is typically debilitating for both the individual & his or her performance. How Stress Affects Autistic People: Because autism tends to reduce the resources a person has to cope with challenges brought on by stress, an autistic person's experience with & their ability to handle various stressors will likely be much different than it would be for an allistic, or a non-autistic person. Autistic Comorbidities: In my blog post about why most autistics don't want a cure for autism, I mentioned the fact that there are a lot of comorbid disorders that tend to accompany autism. Some disorders that autistic people are at higher risk for are mood disorders. In fact, it is estimated that 10 to 50% of autistic people develop depression in their lifetimes & about 5% of autistic people develop bipolar disorder in their lifetimes. In the general population, prevalence rates for depression & bipolar disorder are much lower & are estimated to be up to 7% & less than 1%, respectively. Other mood disorders that autistic people are at a higher risk of developing include, but are not limited to anxiety disorders, post-traumatic stress disorder (PTSD), & obsessive compulsive disorder (OCD). Autistic people who are verbal & who do not have intellectual impairments are at a much higher risk of developing mood disorders than those who are non-verbal &/or are intellectually impaired. Due to the high prevalence of mood disorders in autistic individuals, stress could be highly problematic to cognitive, physiological, & behavioral functioning in the autistic population. Common Stressors For Autistic People:
Common Ways Autistic People React To Stress:
Studies Indicate That Autistic People Have Heightened Responses To Stress:
How Stress Affects Me: I have never been able to handle stress well. Stress tends to cause me to get flustered & prevents me from being able to think clearly or rationally. Depending on the intensity of the stress I am experiencing, it may cause shutdowns, which prevent me from being able to communicate verbally or non-verbally with others. Meltdowns are an extremely rare occurrence with me, but stress has caused meltdowns to happen in the past. My Most Common Stressors:
While some of the above stressors also may stress out allistic people, it is important to remember that I experience stress on a whole different level than what is considered normal. For example, there have been times in the past where I was trying to have conversations with my supervisors, but was unable to form simple coherent sentences due to the panic that resulted from my supervisor simply being in the same room as me. Another good illustration of how stress affects me is I have been told from multiple police officers that they thought I was on drugs during their initial interactions with me. I have never been on drugs in my life, but clearly, police officers stress me out so much that interacting with them causes me to act like I'm under the influence even though I am far from it. There will be a future blog post written about issues surrounding police officers & autism where issues like this will be discussed further. I had a blog topic planned for today, but due to a phone call I received yesterday afternoon, I'm straying from it & blogging about something totally different (which is difficult for autistic people to do) instead. So, let's talk about autism resources! When you get an autism diagnosis, the next step is typically... you guessed it... resources! The resources that come after the diagnosis are SO overwhelming! Or, at least that's how it was for me. I decided to post about this instead of my planned topic because my vocational rehabilitation counselor called me yesterday afternoon to check in. There were multiple resources I applied for once I had my diagnosis. One of the resources I applied for was vocational rehabilitation services. What Is Vocational Rehabilitation?: Vocational rehabilitation is a process that helps people with lifelong & acquired disabilities find, get, & keep meaningful employment. All states have vocational rehabilitation services, but they might be called different things depending on the state. Now you know why this is so overwhelming for me. I have mentioned multiple times throughout this blog that anything & everything relating to employment causes intense amounts of stress & anxiety for me. The last time I had seen or spoken to my vocational rehabilitation counselor was back on Thursday, February 9, 2023; when I had my initial in-person meeting with him. That was roughly two months ago. During that meeting, I explained some of my anxieties involving employment & also showed him what I had done so far with my Splashed With Water website. Back in February, this website looked nothing like it looks now because it was not nearly as far along as it is right now. It was also not a live (or published) site at the time.
During today's conversation with my vocational rehabilitation counselor, I shared with him the link to this website, which he took a peek at while speaking with me. From what my autistic self could tell, he seemed quite impressed & asked if he could share it with the rest of the office. Of course, I gave him permission to do that. I also told him to be sure to let me know if any of his colleagues had any thoughts or feedback regarding my site. He then asked me what I actually wanted him, as my vocational rehabilitation counselor, to help me with. What I actually wanted to outcome of the vocational rehabilitation services to be. To be completely honest with you, that was a difficult question for me to answer. What I told him was that I think the traditional, corporate-style job is the safest choice & the choice that everyone who loves & cares about me wants me to make. However, I personally feel that that is not the best choice for me personally due to the fact that I think it could very likely be detrimental to my mental & physical health & wellbeing. I told him that what I think the healthiest thing for me to do is to focus on this website & make this new business work for me. Was that the right answer? I don't know, but I'm trying to figure it out. What I can tell you though is I really hope this business works for me. I can feel the burning passion inside of me as I type this blog post out. 🔥 Autism disclosure is a very personal issue that people within the autistic community are very divided on. Some people are very open about it & tell anyone & everyone. Others disclose in stages, disclosing first to their innermost circle, working out as more & more comfort is reached. Some people like to tell only their closest friends & family. And lastly, there are the people who like to keep their autism completely to themselves. MY Autism Disclosure Process: I personally fall into the second group of people listed above, being someone who disclosed in stages. This is how I went about it. Please keep in mind, there is no right or wrong way to disclose your autism & disclosing your autism isn't something you have to do at all.
WHY I Chose To Disclose My Autism Diagnosis: At first, I chose to disclose be better understood, accepted, & supported by family & close friends, as well as people who I interact with on a regular basis. I later disclosed to an even larger group of people with the purpose of educating them in effort to spread more autism acceptance & awareness in my community. Thinking About Disclosing YOUR Autism Diagnosis?:
Remember, there's no right or wrong way to disclose your autism diagnosis & you absolutely don't have to do it the way I did it. Some Things To Keep In Mind:
In my previous blog post about Autism Speaks, I briefly mentioned that my life would be so much easier I wasn't autistic & that I wish I wasn't autistic, but I didn't get into why I feel that way. Let's take a moment to get into that now. Why I Wish I Wasn't Autistic:
I know I am not like most autistic people, but this is truly how I feel about being autistic & how I think being autistic hinders my life. I would be elated if there was a cure for autism, or even if there was a medication (with minimal side effects) I could take that could get rid of my autistic traits, but, at the same time, I know that that isn't going to happen. At least not in my lifetime. I am someone who was brought up to be accepting of all people: different religions, different backgrounds, different cultures, different disabilities, etc. So, whether you are autistic or not, all I ask is that you are accepting of me regardless of whether you think similarly or differently from me. I am using Splashed With Water as a way to educate, but also to share what it's like to be an autistic woman & thinking these thoughts is part of what being an autistic woman is like for me. Now that we've covered why I DO want a cure for autism, let's talk about why most autistics disagree with me.
Why Autistics Don't Want A Cure For Autism:
You'll find that throughout this blog, my personal opinion often differs from the opinion of the autistic community as a whole. When that happens, I'll do my best to cover both sides. I hope doing it this way was helpful to you. This also shows you that all autistic people are different from one another, just like how all neurotypical people are different from one another. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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