Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people.
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WELCOME to the first Autism Acceptance Month blog post of 2024! Today, I wanted to take a few steps back & go over some autism terms & what they mean. I use many of these terms throughout my blog & I try to provide definitions as I write. It's always good to take the time to pause & review what some of these terms mean though. And there's no better time to do that than when we're kicking off Autism Acceptance Month! Important Autism Terms & Definitions:
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. 💙 A couple days ago, my case worker called me regarding my disability application. This is the first time I ever heard from him since applying for disability benefits back in early December. In fact, before this week, I didn't even know I had a case worker! Unfortunately, the call ended with me feeling incredibly flustered. Despite the fact that my case worker & I were both speaking English & we are both native English speakers, I felt as though we were speaking two entirely different languages. This is quite a common occurrence for me, & for other autistic people, as well. Communication is so, so difficult when you're autistic. In fact, all my adult life, I've had my dad sit with me when I make phone calls about my personal needs. And it's not just because of the severe phone anxiety I experience. It's because I literally cannot communicate with people about the numerous issues I deal with everyday unless they are part of my very, very tiny inner circle. Especially when I'm on the phone. When I first received my autism diagnosis, I expected to have a much, MUCH easier time conveying my needs to & working with various resource people. I mean, now I have a name for my struggles, plus these people are used to working with people with disabilities, right? I was SO wrong here! I have found that it has been almost impossible to get my points across to anyone unless their background is specifically in autism AND they have a certain personality type. Without that exact combination, people are almost impossible to work with.
For instance, back in December, I had an extremely heated argument with the resource person at the autism center where I went for my autism spectrum disorder evaluation & diagnosis. I expected that this conversation would give me hope, but instead, it left me feeling more defeated & alone than ever before. I could go on & on about my conversation with her. I would think that not only working in an autism center, but having an autistic adult child at home would make her be able to speak to an autistic woman with respect & dignity. Much of what she said was completely uncalled for & inappropriate. Despite the fact that I consider myself a very patient person & easy to get along with, I can tell you that the only reason I didn't completely lose my cool with her is because I was walking my dog, Teddy at the time she called me back & I wasn't alone in my bedroom. I needed to control my emotions in order to not make a complete fool out of myself in public. That's how bad it was. The same exact thing happened during a phone call with my vocational rehabilitation counselor this past June, but I can give him more benefit of the doubt because he certainly knows a lot less about autism than the autism resource woman. Lastly, during my phone conversation with my case worker a couple days ago, he put so much more weight on my autistic comorbidities than on autism itself. I can tell you that while I likely would still struggle with mental health challenges without being autistic, being autistic is what makes my mental health challenges so disabling that it affects my ability to work. Autism is what's important here, not the plethora of other difficulties I have. Yes, I put down other diagnoses too because you can't forget that they do exist. But, that's not what's important here. People focus on the mental health aspect of things because that's what they know more about. They also think that if you take medication & go to therapy, you can be fixed. And if your issues can be fixed, then there's no need for disability benefits, right? That would save Social Security a lot of money. My case worker was very surprised that I don't see a therapist right now & it has been a very long time since I've seen one. I don't see a therapist is because I feel like it was a total waste of time & money. I'll get more into the details of therapy on another day. My experience in therapy is more than a blog post worth of info. Anyway, the conversation I had with my case worker scared me because how is he supposed to help me if we keep talking in circles & I can't get him to understand any of my points? This is not okay. I am posting about this to show you just how frustrating being autistic can be. I am SO beyond exhausted that no matter how hard I try, I can't get anyone to understand me or to respect my thoughts & feelings. 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. 💙 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. 💙 When I first disclosed my autism to my family, friends, & some former teachers; I received the following email response from one of my mom's cousins: Kim, I’ve read and re-read your email. I was super impressed with you when you came to take care of your gung-gung and am even more impressed now. I am fascinated by your story and the extent you are taking to understand your past, present so that you can move forward. I can tell that it has been monumental for you to put a name to explain all of the struggles you have had. I’m happy for you and if you spent any amount of time blaming yourself (like we all have a tendency to do). You now know, it wasn’t you. While I was disheartened to learn the extent of what you’ve been going through, it was equally troubling to learn that your delayed diagnosis was primarily due to your gender. Another example of how these stereotypes can do real harm. But you are not focused on that, you’re focused on moving forward. Everything in your email points to that. Again, so much respect for you. Thank you for putting so much care into this message. Thank you for including me. If I have said anything that does not strike the right tone, let me know. I am processing and want to learn. What my mom's cousin is referring to in the line that I made bold, is the trip I made to my grandparents' home in California in the fall of 2019, about three & a half years ago. My grandma, who I called Haw-Bu, was recovering from having part of her tongue surgically removed due to a malignant tumor & because I had so much flexibility in my schedule, I planned to stay with my grandparents for two weeks to help out during my Haw-Bu's recovery. However, my Haw-Bu ended up having numerous complications due to the surgery & needed to stay in a rehabilitation facility to gain her strength back before she could safely live at home. So, I ended up extending my stay by another week & stayed for three weeks instead of two. Also, rather than helping out both of my grandparents, I became my grandpa's primary caregiver during that timeframe. I was responsible for the usual caregiving & household responsibilities as well has driving my grandpa, or my Gung-Gung as I call him, to & from the rehabilitation facility everyday so that he could visit my Haw-Bu. My Gung-Gung survived a major stroke several years earlier that severely disabled him, so he couldn't live in his house alone. I had turned twenty-nine just before making this trip. That is a lot of responsibility for any person, but it's especially a lot for a young person, particularly one who had so many different mental health challenges & now I know autism, as well. Let's talk about how autism, diagnosed or not, affected my caregiving responsibilities:
Social & Communication Deficits
Excessive Adherence To Routines & Resistance To Change
Interests That Are Abnormal In Intensity & Focus
Hyper-Reactivity To Some Sensory Input
Prosopagnosia
Topographic Agnosia
Grief is something that is certainly not fun to talk about, but it's part of life, & there were a couple difficult events involving my grandfather (he is doing okay!) that happened within the past few days that has me thinking about it more than usual. Just to give you a reference point, the five stages of grief are:
Those who are close to me know how incredibly important my maternal grandfather, who I lovingly call Gung-Gung, is to me. Ever since I was a little girl, he & I have had the most incredible, special bond. I love that man so, so, SO much. Back in January 2015, while on a cruise in Mexico, he had a major & devastating stroke. As a result, he acquired a condition known as global aphasia, which means that he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language of any kind. He also lost feeling on the entire right side of his body. Transition & Change:
Now, remember that grief doesn't only occur when someone dies. It also occurs when any major negative change happens in someone's life. For example, people may grieve when going through a divorce or heartbreak or if a close family member or friend moves away. I have been in the denial stage of grief for eight years & four months now (since that very day in January 2015 that the stroke occurred). Yes, as horrible as that is (it's even more terrible seeing it in writing than it has been thinking it in my head all of these years), that's the complete & honest truth. A Side-Note About Therapy: I had been seeing a therapist at the time that the stroke occurred. And I did tell my therapist how much I was struggling with my Gung-Gung's stroke, but I don't think she understood to what extent. I stopped going to therapy in the fall of that year, when I had to change to a different insurance plan that my therapist didn't accept. I haven't tried therapy again since, because my experience in therapy was that it either was extraordinarily harmful & detrimental to my mental health (the exact opposite thing that therapy is supposed to accomplish) or that it didn't make any difference at all, good OR bad. I had been through a plethora of therapists, all who, believe it or not, I wanted to strangle, before I found my last therapist who I really loved. Going through so many different therapists before finding the right one was incredibly emotionally & physically exhausting & draining & going through that multi-year process again, especially when I don't see the benefit in it is just not something I feel I have the energy or the drive for. I'll get more into my experience with therapy on another day. Now that I know I'm autistic, struggling this much with my Gung-Gung's stroke more than eight years later makes complete sense. Autistic people thrive on routine. However, transition & change are extremely difficult for us. That has to be why I'm still in the denial stage of grief this many years later. I just want my Gung-Gung to go back to being the person he was before his stroke. I mean, I know my mom wishes that too, but she has long accepted that this is her new reality, while I'm still denying that. Special Interests Particularly in autistic girls & women, special interests can be people or characters in novels or in movies. If an autistic person's special interest is a person, not only is the autistic person is going to be incredibly loyal to that person, but rejection will be particularly devastating, whether the person of interest is a friend, a romantic interest, etc. I didn't realize it until very recently, after I began learning more & more about how autism presents itself in girls & in women, but my Gung-Gung is one of my special interests. For me, this means that his presence & his mere existence in the world, & in my life takes precedence over everything else. The changes that occurred in him due to the severity of his stroke completely crushed me. And once he eventually passes away, that will shatter my entire world. The following statements are all true about my Gung-Gung:
When my grandma passed away a couple years ago, broken heart syndrome became one of my special interests. Unfortunately, I never had a relationship with my grandma, so I didn't grieve when she died. The hardest part about losing my grandma was thinking that her death would be what would kill my Gung-Gung, who I love so much. (My grandparents had an incredible love story.) I learned that the risk of a man dying of a broken heart goes down dramatically at the three-month mark, so once we hit three months, I felt an instant wave of relief. My aunt & uncle were visiting this past December & I had a heart-to-heart conversation with my aunt one night during that visit. My aunt brought up that when my Gung-Gung eventually does pass away, it really won't be that devastating because of how much he's changed since his stroke. I absolutely did not agree with her because the finality of death is so terrifying to me. Never feeling his arm around my shoulders; being able to hold his hand; or seeing my puppy, Ollie kiss him all over his face, bringing him so much joy & laughter is just not acceptable to me. It would absolutely devastate me & break my heart & wouldn't bring me any relief whatsoever. What my aunt expressed to me is how the average neurotypical person would feel, given the situation. But, what I'm expressing here is how one autistic woman feels, given that same situation. Being Literal-Minded Autistic people are literal-minded. Now, with that being said, I personally don't believe in God, in Heaven, or in any kind of afterlife. So, as morbid as that is to believe, I believe that when someone you love passes away, you'll never see that person ever again. The idea of God, Heaven, & an afterlife are just so abstract, foreign, & unbelievable in my mind that until I've actually seen proof that those things exist, I'm not going to believe in it. I know that those beliefs bring comfort to many people & I wish it did to me as well, but it just doesn't make sense in my literal mind. I know my Gung-Gung believes in Heaven & he wants to go up there to be with my grandma, the love of his life, again, but because I don't believe in it myself, I don't have the comfort he does. In fact, the idea of that actually makes me sick to my stomach. I am also someone who believes that the two things that should never be talked about are politics & religion, unless you know for sure that whoever you're talking to has the same beliefs as you. Because of the role my beliefs play in my fear of death, I thought this was important to mention, but at the same time, I want you to know that I completely understand & respect your beliefs, whatever they may be. So, I tried my very best to make this section as short & as to the point as possible. Fear Of The Unknown Autistic people like to know what to expect. In my thirty-something years of life, I have lost two grandparents & two pet bunnies. (Luckily, I have not lost any other loved ones.) I didn't grieve when either of my two late grandparents passed away. I believe that when my Gung-Gung passes, it will be the first time I would have ever grieved. And from what I know about myself & about my relationship with my Gung-Gung, I'm very worried about my ability to handle that grief. I hope that this post gave you valuable insight as to what grieving might feel like as an autistic woman. |
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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May 2024
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