Internalized ableism is something that most, if not all, disabled, chronically ill, & neurodivergent people have experienced. But, first of all... What IS Ableism? Ableism is the discrimination of & the social prejudice against people with disabilities based on the belief that "typical abilities" are superior. Examples Of Ableist Comments About Autism & Autistic People:
Sadly, several of the above comments are said to me on a consistent basis. A few of them many, many years before I even knew I was autistic. And I have no choice but to take it. Hearing those things hurts. It really, really hurts. Examples Of Ableist Quotes By Temple Grandin, The "Face" Of Autism:
Now that we know what ableism is...
What IS Internalized Ableism? Internalized ableism is when people with disabilities absorb & believe the negative stereotypes & prejudices society holds about them. Examples Of Internalized Ableism For Autistic People:
ALL except for three of the above statements are true for me, in my experience of growing up autistic, & BEING AUTISTIC. This is one reason why it is so important to be kind & to not use ableist language. Your words really, truly matter. A LOT.
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What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
With today being the Lunar New Year (the year of the dragon!), I just wanted spend this blog post telling you about Asian culture & autism. My mom's side of the family is of Chinese descent & while I definitely have had an American upbringing, Asian culture has had great influence over the way I was raised. In the Asian culture, you are taught from a very young age that all of your personal difficulties are to remain inside of the home. In fact, if you were to be open about your challenges in public, you would likely be thought of as a disgrace. Unfortunately, the majority of Asian Americans still have this mindset to this day. One of the times my mom taught me about this was when she talked to me about hiding the bottles of antidepressants that I was taking before my grandparents arrived for a visit (particularly because of my grandpa's background in pharmacology) in order to prevent questioning & criticism. Moments like these are probably why I have always been more comfortable confiding in my dad than my mom, both as a child & as an adult. I have always felt like the fact that I have had lifelong mental health difficulties, & now autism, is something to be ashamed of because in the Asian culture it is. Another example of this occurred many, many years ago when my grandparents took my mom & my aunt on a tour of China. I remember my mom telling me that everyone wanted to take pictures with a person in their tour group who was using crutches. The reason why? If you're using crutches or a wheelchair in China, you generally don't leave your home. So, that's not something you ever see out on public streets. Asian Americans love to pride themselves in (& even brag about) which colleges & universities they got into & their SAT scores & then later on, how successful their careers are. I remember my grandma telling me about a time in school when she cried (something I have never seen her do EVER) because she got a 98 on a test. I can't picture myself ever crying over a 98. In Asia, when students don't do well on a test, even if it was the entire class that didn't do well, it is never the teacher's fault. It is never because the teacher didn't teach the material well enough or the test was written poorly, for example. It is always because the student didn't study hard enough. When a child has a disability that makes achieving the types of academic & professional successes that Asian people strive for much more difficult, such as autism, it poses a very significant problem for the child & her or his family. Asian Americans don't have any issues asking for help when it comes to furthering their child's academics or career, but when it comes to autism, they tend to refuse help & then the child is left to suffer alone, in silence. When children are diagnosed with autism in China, they are often sent to costly private treatment centers for ABA therapy. However, while this type of therapy is the most common type of therapy for autistic children, it is an extremely traumatic type of conversion "therapy" that essentially teaches autistic children to act in ways that make allistic, or non-autistic people more comfortable. Children who have received this type of therapy often develop post traumatic stress disorder by the time they reach adulthood.
Sadly, autism is still a relatively new condition in the Asian community, with China first recognizing it as a neurological disability as recently as 2006. In fact, many Asians have heard about autistic non-Asians, but they've never encountered an autistic Asian before. This is because less than one percent of autistic Asians have been evaluated for autism, let alone are receiving support for it. The thought that ninety-nine percent of autistic Asians are undiagnosed is quite staggering. Asians are likely not diagnosed with autism because they are afraid of being a disappointment, something I felt that I was until shortly before my thirty-second birthday, when I learned that I was autistic. I'm going to start this blog post off by saying this: this is the most vulnerable blog post I have written thus far. Some things that are in it are things that I've mentioned before & some things aren't. But, everything in this post is as real & as raw as it gets, is one-thousand percent true, & is something that I felt needed to be said. Growing up, & even now, my life was & is a struggle. I was autistic & I didn't know it for almost thirty-two years because I grew up at a time when girls like me were just not diagnosed with autism. I was living in a world that I didn't fit into, but I had no understanding as to why that was until about a year & a half ago. I was so lucky because my parents did everything they could to give me the BEST childhood ever. And I'm so thankful for that. However, there were certain things that no matter how loving & how supportive my parents were, they just couldn't protect me from. Every autistic person you talk to will have something to tell you about how society treats her or him; about the trauma that (s)he endures on a daily basis. The way neurotypical people treat us does real, long-lasting harm. I never understood why people treated me so poorly because I didn't think I did anything wrong. Were they treating me that way because I simply exist? Probably. The bullying I experienced in elementary school through college was INTENSE, & it only worsened the older I got. From being made fun of for being too quiet to having my feet walked on top of on a daily basis to being barked at & growled at like an angry dog to boys trying to trip me in the hall & slapping my butt when I was at my locker. Freshman year in college, they put me into a quad with another Shrewsbury alum who inserted nasty things about me into the brain of another one of my roommates. They ganged up against me & made my life a living hell for the entire year. A couple years later, a different roommate suddenly gave me the silent treatment & I had no idea why, until one of her friends told me. It was because I was uncomfortable with boys sleeping over in our room, something that I thought was perfectly reasonable, especially for a quiet & a timid girl like myself. I was never given the chance to make any sort of compromise because she never told me why she was so mad. Many years later, I found out that this particular roommate now has an autistic child. What a coincidence! Being treated with such cruelty on a daily basis for so many years is extremely traumatic for us. And it often has the same types of consequences on our brains as going to war, witnessing someone get murdered, or having an abusive spouse would. It just takes a much longer amount of time to do the same amount of damage. More than 40% of autistic individuals struggle with post-traumatic stress disorder & although I have never been diagnosed, I do think I am one of them. I think that the effects of having to endure the type of treatment I described above for so many years is why it takes me such a long time to trust someone, even now, as an adult. I also never really voiced the significant amount of pain I was experiencing to my parents because I didn't want to worry them. So, I didn't get as much support as I probably needed while I was going through that. I knew I have caused them A LOT of worry ever since the day I was born & I didn't want to add to it even more. From a very young age, I wanted to do everything I could to be the best daughter I could be, even if it meant unintentionally harming myself. When I first learned from my physician that the cause of all of my lifelong struggles was due to living with undiagnosed autism, I took a couple of months to process it & to learn more about how autism affects girls & women. But, after I did that, I wanted to do more digging into my past to learn more about how autism affected me as a young child & as an adolescent. I knew that when I was in school, my mom kept a very thick manilla envelope full of documents & letters from various medical professionals & educators. Knowing how organized my mom always was, I asked her if she still had that envelope & she did. This envelope ended up being a treasure box into my past, containing a lot of information, some that I never knew about myself, from when I was less than a year old until I was eighteen years old. One of the things that really stuck out to me was meeting notes from my seventh grade language arts teacher, Peggy. Better expression in written vs. verbal. More sophisticated style of writing. Not good with being caught off guard. Interacts better with adults. Gets frustrated in groups since they are fooling around and she is so concerned with her grades. Kids aren't patient waiting for her to respond. Struggles with reading comprehension. Getting a bit better advocating for herself. ALL autistic traits. Thinking back to seventh grade, I had always thought very highly of Peggy. I wondered if she remembered anything else about me that would be helpful for me to know, going into an autism evaluation. I knew that she no longer worked in the Shrewsbury schools, but teachers' contact information is usually readily available online. I looked Peggy up & I wrote her an email explaining my lifelong difficulties & how they led to an impending autism diagnosis. I attached a scanned copy of the meeting notes to the email, as well. However, since at this time, I had been a student in her classroom just over eighteen years ago & I hadn't seen or spoken to her in at least fifteen years, I had this underlying fear that she wouldn't remember who I was. I felt like I was a fly on the wall in school, barely saying a word & blending in with the background. I knew she'd had a lot of students since then & I thought I was easy to forget. Spilling my guts out to her only for her to not remember me would've been SO utterly embarrassing. This was in early August of 2022, by the way. It was only a couple of days before I heard back from Peggy & I was beyond relieved to know that she absolutely did remember me. Peggy sounded so delighted to hear from me, too. She described me as a very kind, shy, reserved student (with black-framed glasses if I recall correctly), but she admitted that she didn't think she had much more detail to give me. However, she did offer to chat by phone. And I eagerly took her up on that. If we chatted on the phone, I might be able to foster another connection with a caring & a supportive person & I really felt like that was exactly what I needed because like many autistic people, my life was extremely isolating. This blog post is about my interactions with Peggy & how her kindness & her compassion have changed my life. Peggy didn't know this going in, but I had a lot going on in my life at the time I reached out to her, most of it not even having to do with autism. Back in 2015, my maternal grandpa had a debilitating stroke that left one side of his body without feeling & completely took away his ability to process language (this is known as global aphasia). I unfortunately did not grieve the stroke properly & still to this day, I am in denial that it ever happened in the first place. Now that I know I'm autistic, this makes total sense as we do not grieve in the same way that neurotypicals do. My grandma was his devoted caregiver ever since. The year prior to when I connected with Peggy, my grandparents relocated to Shrewsbury from California because my grandma was dying from tongue cancer. She lived here in Shrewsbury for just two & a half months before succumbing to the disease (six months earlier than expected). While I never had much of a relationship with my grandma, watching my grandpa grieve the love of his life for over sixty years & worrying everyday that he would die of a broken heart was the hardest thing I have ever had to do. At the time I had reached out to Peggy, we had recently passed the one-year mark of my grandma's passing. I was also still getting into the groove of being a secondary caregiver to my grandpa. Due to the brain damage caused by his stroke, my grandpa would often say & do things that hurt me tremendously. No matter how much I tried to remind myself that my able-minded grandpa would never say or do such things, I just couldn't get the hurt to go away. This was particularly difficult for me to deal with because my grandpa & I have always been incredibly close. His hurtful actions were a complete one-eighty from how he'd treated me for the first twenty-five years of my life. All of these things would be difficult for anyone to cope with, but when you're autistic, you're handed a plethora of challenges in life that allistic, or non-autistic people have the privilege of never having to experience. And it's those challenges that make dealing with things like this significantly more difficult. Keep in mind that I didn't know that I was autistic when all of the above events actually happened, so I didn't understand why I reacted like this, why I reacted completely differently from the rest of my family. Ever since I was a young child; I have yearned for my grandparents to live close by & I was so, SO happy to finally have that; but now that I did, my life had become a complete circus. It's something you can't understand without living it.
On the autism forefront, just a couple months ago, I had learned that the reason why I have struggled so much throughout my life was because I was living with undiagnosed autism. It was the reason why:
That first phone conversation I had with Peggy was a breath of fresh air. Back when I was her student, I remember her being really easy to talk to & that was still the case. I filled her in on a lot of things, many of those things being things that hardly anyone knows about me, things that I'm ashamed of. The fact that I even felt comfortable enough to fill her in on those things, after all this time, speaks volumes about Peggy's character, the person she is; especially since I've always felt like I need to protect myself from people; I've always been afraid to show the real me. The way Peggy reacted to the things I told her was really, really comforting. She really took the time to stop & to listen to what I had to say & she didn't make me feel judged, guilty, or like I had done anything wrong. Every time I mentioned how something made me feel, whether it was a positive or a negative emotion, she validated it. And if she suggested something that I didn't think would work, I would explain why, & that was totally okay with her, too. She also told me how much she admired my courage in reaching out to her & that she was here for me. Having that conversation with Peggy gave me the courage to reach out to many of my other former teachers, as well. And while some of those other teachers gave me much more detailed insight than what Peggy could offer me; a few even telling me that an autism diagnosis would absolutely not surprise them; it was Peggy's kindness, support, time, & most of all, her compassion that made the biggest difference to me. That was what I needed more than anything else in the world. As I had other conversations with Peggy later on, she felt that she could no longer offer me the kind of support I needed. Her experience was with adolescents & I was an adult with adult problems looking into adult resources (which I now know are scarce). However, I can tell you that this is absolutely NOT the case at all. I have gone my entire life feeling like when I talk, NO ONE hears me & my feelings don't matter. Sadly, these are commonalities among autistic people. Peggy was the first person I talked to in many, many, many YEARS who really made me feel like she heard what I had to say & she valued my opinion. Plus, she was so, so, SO kind. And she was so incredibly compassionate, too. I have lived a lifetime of people being unkind to me; being critical of everything I do or say, everything I don't do or say, every facial expression I make or don't make. So, it's extra noticeable when someone IS kind; when someone accepts me as I am; when someone ISN'T judgmental; when someone really, truly CARES. When I looked Peggy up to make that first contact & I discovered that she was no longer a language arts teacher, but she was a special education teacher, I wasn't surprised. The notes that she made about me were much more insightful & helpful than the notes I came across from every single one of my other former teachers. Every single one of Peggy's notes was so SPOT ON, about me, AND about an autistic middle school girl. However, after having the interactions with Peggy that I had, I really, truly feel that special education was what she was meant to do with her life; it was her calling. The kids in her classroom are SO lucky to have her. I know she's changing their lives because she's changed mine & it's been twenty years now since I've been her student. (Typing that out makes me feel so old!) More recently, a couple weeks ago, Peggy's mom passed away. When I found out about her family's loss, I knew I needed to go to the visitation. While I've tried to thank Peggy for what she's done for me numerous times before, I didn't think I got my message across effectively enough. There was no better way to thank her, to tell her how much I appreciate her than by going to the visitation to support her & her family during their time of grief. While I was still waiting in line, Peggy caught my eye & gave me a reassuring smile, totally calming my nerves. I knew that the only reason she recognized me was because I had sent her a recent photo of myself back when I originally connected with her. (I look A LOT different now than I did when she knew me in middle school.) That day, during what had to have been one of the most difficult times in Peggy's life, between small actions she was taking & things she said, Peggy was still blowing me away with her kindness & her compassion. When I spoke with her in the receiving line, Peggy asked me about how things were progressing. The fact that she continued to show me so much care & concern while she was grieving the loss of her mom, once again spoke volumes about the absolutely wonderful person Peggy is. As much as I wanted to express the great frustration I was feeling due to things moving slower than molasses, as well as some of the resource people I was working with not only not seeming to know how to help a late-diagnosed autistic woman like myself, but actually making things worse; I didn't. There was a line of people a mile long behind me, all waiting to talk to Peggy & her siblings. Plus, I wasn't there to talk about my personal difficulties. I was there to give her my condolences, my love, my compassion, & my support; things that she had given me a couple years earlier that meant so, SO much to me. I really, REALLY hope that I'll have the chance to fill her in on those things & more one day, at a much quieter time, when I'm not feeling like I need to give her MY support. A few days earlier, when I mentioned to my mom that I was going to go to this visitation, she told me I was very brave for going alone. (This was the first time I had ever been to, or even thought about going to visiting hours by myself-- the couple other times I had been to visiting hours, my family was with me.) In my mind though, I had no choice other than to go to this. I knew that Peggy would never expect me to be there, but Peggy made such a big impact on me recently that I really felt like I needed to go. I am SO quiet; I have a lot of anxiety when it comes to social situations, especially with people I don't know; & I'm someone who really struggles with coming out of my comfort zone. But, when I feel this strongly about something, I do it. And I was SO glad I did. When I talked to Peggy about why I wanted to be there to support her & her family & what an impact she'd made on me, I knew she was really touched by my presence. And that really warmed my heart. So, as I wrap up this very long blog post, why am I telling you all of this? Well, it's because I think you can learn a lot from what Peggy did. What she did is a very good illustration of how doing something so simple can really turn someone's whole life around. When I reached out to Peggy, I was hoping for a little bit of insight, but I got something so much more meaningful instead. She was so unbelievably kind & compassionate, giving me her time & a listening ear. Things that I so desperately needed. And that made such an enormous difference to me in the lonely world that I was living in. 💙 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. 💙 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. 💔💔 Mother's Day is a day to celebrate the women who have made a difference in your life, whether that's your mom, your grandma, your aunt, your second mom, etc. I am so lucky to have had the experience of having both a wonderful mom AND second mom. Having a second mom is a true gift. It really takes a special person to make someone who isn't your daughter feel loved like she is. So, let's talk about my close friend, Beth, for a moment. I have known Beth for about twenty-five years now. She was my classroom aide back when I was a little second grader. And she is probably the person who knows me best, after my parents. Every single part of school was painfully difficult for me, but the academic aspects of it were (sadly) a breeze compared to all other aspects. I didn't have friends, I was bullied very severely, & because of my gross motor difficulties, I couldn't keep up with the other children at recess, even if I wanted to. I also didn't know I was autistic. I know I leaned on Beth way more than I should have back then. But, she was my only friend. She was who I hung out with at recess, who I laughed with, who I wanted to spend my time with, etc. Her time, her kindness, & her love made such a huge impact on my life back then. She really took me under her wing & she made school so much less painful than it would've been without her influence. As I grew older, our relationship only grew. I've told Beth things about myself & thoughts that I've had that I've never told anyone else, not even my own mom. I love my mom with my whole heart, but with my mom, I have fears about disappointment, judgement, & worry. Fears that probably every daughter with a caring & loving mother has. With Beth, those fears are not there, but the love & care that I so desperately need is. She's someone I confide in & tell my deepest secrets to. I also sometimes share my worst fears & concerns with her, so that I don't worry my mom. She's allowed me to vent & complain about whatever it is that's on my mind, as well. Her life experiences, perspective, & advice have been so valuable to me throughout the years. Because of the way I've been treated by my peers when I was growing up, the intense bullying, being constantly left out, I've built cement walls around myself that are so strong that even a bulldozer couldn't knock them down. With Beth, there are no walls because with her it's total comfort all the time. She was one of the first people I told that I was going to be getting an autism diagnosis & I was certain that that wouldn't surprise her. I was right. But, not only that, sharing this information with her only made our relationship stronger.
Beth has done so many things over the years to show me she cares. Here are a few examples:
I am so beyond thankful to have such an amazing person & friend in my life who has changed my life in countless ways. I love you so much, Beth! If there is anyone else reading this who has taken someone in who is not their own daughter & made her feel loved, I want to thank you from the bottom of my heart. It takes a really special person to do that & what you're doing really, truly matters. I know because it did to me. 💝 I'm feeling kind of sad as I type this out because my aunt & my grandma were visiting for the past several days & they left this morning. Side-Note: I tried to blog as much as I could while my aunt & my grandma were visiting, but posting blogs are very time-consuming, so I could only get one blog posted while they were here (sorry!). It takes me anywhere from one hour to several hours to put one blog post together, depending on the blog's topic. I design all graphics that go in my blogs myself & that's the most time-consuming part. The writing portion doesn't take that much time, especially since I've always been a very strong writer. If you look back on notes written from my teachers back from when I was in school, my elementary through high school teachers all seemed to agree that my written communication was much stronger than my verbal communication. That is the way I [still] feel as well & is a very common thing among autistic people. It is also one of the reasons why I decided to give blogging a try. Up to this point, the blog that took me the longest to put together was April 12th's blog, The Harm of Autism Function Labels (the linear & circular autism spectrum graphics took a very, very, VERY long time to create!). Back The Topic Of This Blog... FAMILY: My family is my entire world 🌎— they always have been & they always will be. I mean, lots of people are family-oriented, but for me, there's a bigger reason why. I know a lot of the reason my family takes up so much of my heart & so much of my world is because I depend on my family to take on roles that friends typically take on in people's lives. As sad as it is, throughout my life, I historically could never depend on friends. From having friends in general; to making plans with them & having the plans happen when, where, & how I expected them to; to leaning on them for emotional support in times of need. This is as true now as when I was a child, so because of this, my family was always extra important to me. Growing Up In Such A Family-Oriented Town... Without Family
I've lived in Shrewsbury, Massachusetts ever since I was 2½ years old. This town, & New England in general, is incredibly family-oriented. I love the strong family values that New Englanders have. Many people I grew up with had all their grandparents, aunts, uncles, cousins, etc. living less than an hour's drive from them. Many people I know who are in my parents' generation grew up in Shrewsbury themselves & also attended the Shrewsbury public schools, some having the same teachers my brother & I had growing up. Growing up in a town where so many people were surrounded by their extended family, but I didn't have that was really hard on me, & it still is. I wanted more than anything to not have to get on an airplane to see my grandpa & my aunts. Now, my grandpa lives just five minutes down the road from me, but it's because he needs my mom & I to be taking care of him. So, I can't depend on him now like I could when he was healthy. My aunts living so far away from me is really, really hard on me though; especially since I've seen how loving & supportive they have been with all that I have been going through this past year. My Aunts Are Amazing People! I have learned so much about myself & about the world that I am now a part of over the past several months. Both of my aunts are people who have been wanting to learn & wanting to be more educated about autism-related issues that I wasn't aware were effecting my life in such big ways until recently. Having the love & support of motherly figures who are not my mom has been incredible & very much needed, especially since I've been feeling like at home, it is wished that I was neurotypical, & I often feel that I do not belong, always [unintentionally] saying or doing the wrong thing. With my aunts, I can just be myself. If they have a question about something I'm doing or saying, they'll ask me about it with love in their hearts, & we can have an open & honest conversation about it without judgement being an issue. Being able to have in-person conversations with both my aunts this month & last month has been absolutely amazing. While I know that they're both there for me always, sometimes the type of love that I need can just not be achieved over text or through conversations on the phone, but is only possible in person. My aunts are doing everything right & are treating me exactly the right way without being told what to do or say, which feels so, SO good. If you have family close-by to you, please cherish them. I so wish I had what you have! And to my aunts: thank you for being so amazing 💕! Today is April 23rd, my younger brother's birthday! Thinking back, to when I was a little girl, there were two memories that could've been my first childhood memory. The only reason I don't know which one was my first memory is because they both happened the same year, at around the same time of year. One of those memories was visiting my mom & my baby brother in the hospital right after he was born & the other was visiting the house I grew up in before it was ready to be lived in. What does my brother's birthday have to do with autism?
Growing up, April 23rd was the day I disliked most & I feel really terrible admitting that, or typing that out. Now, I'm trying to come across in the best way possible because I love my brother & his birthday is definitely a day to celebrate. When we were kids, our grandparents would always come visit from New York & Pennsylvania for our birthdays too & that was always a really special treat. I would give anything for a visit from my grandparents, something I didn't get nearly enough of. The reason why I disliked April 23rd so much was because of one simple reason: having to say the words, "Happy Birthday!" to my brother when I got up in the morning. I had so much anxiety over that that it caused me to dislike that day so much. In fact, I even remember there being birthdays in the past where I didn't wish him a happy birthday at all & then I got in A LOT of trouble for it. I'll tell you this: I wanted more than anything to wish my brother a happy birthday, but I just couldn't. Like, no matter how hard I tried, I couldn't get the words to come out. At all. It was horrible because it made me feel & look like a terrible older sister & person, but having to initiate conversation first in the morning, even something as simple as wishing him a happy birthday, was an incredibly uncomfortable thing for me to do. When it was my parents' birthdays, I had no trouble wishing them a happy birthday, but when it came to my brother, it was SO dang hard & I didn't know why. Until now. There were multiple reasons why this was, but I think the main reason was the fact that he was close to me in age. It had always been very difficult for me to relate to & to converse with people who were my age. The other reason was the fact that he was just so different from me. He was so loud & rambunctious as a child that it was extremely intimidating, so the idea of needing to be the one to initiate conversation was absolutely terrifying. Even as we grew up & he became less that way, what I remembered was what he was like as a little boy, so I wasn't able to change the way I felt or reacted when April 23rd came around. Once he went off to college & then after college, when he entered the workforce, April 23rd was a much easier day for me because I didn't see him first thing in the morning, so could either text him or say, "Happy Birthday!" at the same time my parents did. Saying "Happy Birthday!" at the same time as other people wasn't an issue. It was saying it individually that was a problem for me. Now when I think back, it makes me so sad, the number of things I got in trouble for when I was a little girl & even when I was older, because we didn't know I was autistic at the time. This is just an example of one of those things. Now, if you're allistic, or non-autistic, you might think that receiving an autism diagnosis, especially as an adult, would be quite crushing. Let me tell you, it's not. In fact, it's quite the opposite. At the end of my evaluation, when my evaluating psychiatrist told me that I am in fact, autistic, the instant wave of relief that I experienced was absolutely incredible & was like nothing I have ever experienced before in my life. What would've been crushing is if I went through this whole thing & I did not receive this diagnosis. Because then, I would've been like, "Now what?!" Receiving an autism diagnosis isn't like receiving other medical diagnoses. Let's take cancer for example. You thought you were a perfectly healthy thirty-something-year-old, but now they've found a malignant tumor. I'm sure if I were in that situation, that would absolutely shatter me to the core. There's nothing about an autistic person that changes when they receive a diagnosis. This is something that that person has had since birth. It's just that now, there's finally a name that can explain all of the lifelong struggles that this person has had.
I knew since mid-June, when my doctor first brought this up & I first began reading about autism spectrum disorder & what it looks like in girls, in women, & in adults, that I am autistic. Reading those articles & that literature was like reading descriptions of myself. Receiving this diagnosis was only confirming what I already knew about myself for all of these months. I will never forget the afternoon of October 20, 2022 because I was so elated to finally know for sure why I struggled for so long, why my childhood was so difficult. Why I'm having so much trouble achieving the things I should be able to achieve as an adult, but can't. Getting this diagnosis was the answer to a plethora of medical & social difficulties I've had from my early childhood into adulthood & that is a good thing. During a birthday celebration that my family threw for my grandfather this past winter, one of my mom's cousins told me that I looked much more confident than the last time she saw me, slightly less than a year ago. The last time she saw me, I didn't know I was autistic. I've never been a confident person, so I certainly didn't feel confident. But, now when I think about it, I think what my mom's cousin could've seen is the relief that just a few months prior to that party, I was finally able to understand myself on a much deeper level than was ever possible at any other point in my life. The sadness that comes along with autism is caused by the fact that I've had so many struggles throughout my life. Now I know that autism has caused all of these struggles, but I've never known a life without autism. It just took over thirty years for me to know that autism was the reason for all of the challenges in my life. 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. 🔥 |
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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