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:
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A good night's rest is imperative for a person's health & wellbeing & I'm sure you know what I mean when I say that you just feel better when you're well-rested. However, this is MUCH easier said than done, especially when you're autistic. Being autistic is downright exhausting, so autistic people generally need more sleep than their neurotypical counterparts do. But, at the same time, sleep problems are very common in autistic individuals. This cycle is endless & a perfect example of that is the fact that it is after 1:30 in the morning as I am typing this. Bedtime procrastination is something that is very common with us autistics & it is something that I struggle with SO much. But, that is something I'll get to on another day. So, let's take this time to talk about autism sleep statistics:
Happy first day of Autism Acceptance Month & Happy April Fools Day (a day that is surely hated by the majority of the autistic community for obvious reasons)! But, today is special for another reason, too— it's Splashed With Water's 1st birthday! I began this blog as a way to spread awareness & acceptance of autism in my community & beyond; launching it on April 1, 2023 as a way to kickstart my first-ever Autism Acceptance Month with a BANG! I wrote precisely eighty blog posts over the last year, so I thought a fun way to celebrate Splashed With Water's 1st birthday would be with blog superlatives. After today, I'll do my very, very best to write about a different Autism Acceptance related topic most days of the month. That's what Autism Acceptance Month is all about after all, right?! Thank you so much for spending your time, hanging out with me, in my little corner of the internet, as I like to call it! 💕 Blog Superlatives:
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. 💙 During a recent family birthday dinner, my mom's cousin's husband made a comment about the fact that I probably didn't cry much as a baby or as a young child. The truth is, though, that that couldn't be further from the truth. In fact, as my dad told him, I was a very colicky baby with quite a loud cry for the first three months of my life. I remember family friends, neighbors, & some family making similar comments to both my parents & me ever since I was a little girl. We could always see their point because on the outside, I was a quiet, well-behaved, polite little girl who was comfortable interacting with adults. No, I didn't know how to start or keep a conversation going, but as long as I was talking to someone who could do that for me, that wasn't a problem. This is also often the reason why autistic girls who are now in their twenties & older are often not diagnosed until adulthood, if they are diagnosed at all. Little autistic girls often acted just like how I did growing up. They tended to be quiet, not cause trouble, did as they were told, & interacted well with adults. They were what my parents' friends would call a dream child. On the other hand, little autistic boys tended to be loud, troublemakers, disruptive, & had difficulty listening. Because of this, the parents & the teachers of these boys saw their behavior as problematic, which pushed them to get them evaluated for & diagnosed with autism spectrum disorder. The Girl Wearing The Mask: I have been told countless times by my parents' friends, particularly by the ones who have sons & no daughters, that they wished that they had a daughter just like me. I mean, I was the perfect child after all. A quiet girl who never caused any trouble. What else could a parent want? Growing up in a neighborhood full of boys, I remember sitting on my next-door neighbor's front steps, helping her pull dead flowers out of her large flowerpot while she braided my hair. I had the hair she so badly wanted to play with before her daughter was born. 😜 Given that picture I just painted for you, from the outside, I looked like I was any parent's dream child, so it was abundantly clear to me why my family's family & friends would think that raising a girl like me was easy. When comments like that were made to me, I just smiled & nodded my head, thinking to myself that they don't know what my home & school life was really like. The struggles I went through day in & day out. The worry I caused my parents. The struggles & worry that now make so much sense with an autism diagnosis. The Girl Behind The Mask:
Home Life: I experienced very intense dizzy spells when I was an infant & again from when I was six until I was seventeen. A big part of my & my family's life when I was growing up was revolved around preventing me from experiencing dizziness, or at least preventing dizzy spells from coming on when I was outside of our home. I remember the traumatic details of it so vividly that it's as if it is happening right now. I would be lying in bed & I would feel like the entire world was going round & round. The world felt like it was spinning so fast all around me, frightening me more than I've ever been frightened before. I remember screaming & crying at the top of my lungs & gripping my dad's hands for dear life. Nothing my parents could do or say would help. Nothing helped other than a full night's sleep. I was always told to try to go to sleep when this happened, but I never could unless it was actually bedtime. Yes, it was just as bad as I'm making it seem. If you would like to read more about my experiences with dizzy spells & my very intense fear of being dizzy, I go into even more detail about this in my previous blog posts about the coronavirus pandemic, about vestibular processing, & about vestibular overload. While I'm still very prone to dizziness to this day, it is such a relief that it no longer affects me like it once did. Due to this trauma I faced when I was growing up, feeling dizzy continues to be one of my top fears. So, I still live my life in a way where I do everything I can to prevent feeling even slightly dizzy. I know what my triggers are, I am very aware of my body & how certain things make me feel, & I have coping mechanisms to help the feeling of dizziness be more manageable. This is one of the reasons why when I drink alcoholic beverages, as soon as I start feeling like there is alcohol inside of my body, I stop drinking. The happy & relaxed feeling that you get when you drink is quite frightening for me & is something I want to do everything in my power to avoid. School Life: Academically: I couldn't learn like other students my age could & my very observant fourth grade teacher picked up on it, suggesting to my parents that they get me evaluated for learning disabilities. When I was ten, I was diagnosed with a nonverbal learning disability & processing speed difficulties. I now know that this was a misdiagnosis because many of the symptoms of nonverbal learning disabilities are the same as the traits an autistic child might have. Girls of my ability level were just not being diagnosed with autism back then. When I was in fifth grade, my parents took me into Boston to have further learning disability testing done. The results showed pretty severe deficits, which ended up being caused by a medication my neurologist prescribed me for my dizzy spells (discussed above ↑), which doctors believed was either a migraine or a seizure variant. My parents were super upset because this testing was very expensive & was not at all helpful. Unfortunately, this particular medication had no impact on the frequency or on the severity of my dizzy spells either. Socially: Because I wasn't well-liked by my peers, I was bullied pretty severely from the time I was in first grade until I was a college senior. This is a commonality among us autistics. Every autistic child & every autistic adult you talk to will likely have something to say about bullying. Knowing that I have always caused my parents extra worry, I tried to minimize the pain that I was experiencing in front of them. I think this is a lot of the reason why the effects of the bullying still have a profound effect on me to this day. Even at that young age, I was trying to be the best daughter I could be. 💙 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...
Today is a big day for me because it marks my one year anniversary of my autism evaluation & me getting the validation I waited precisely four months & four days for (I can't believe it!), so in celebration of that, here are some things I've learned about myself over the past year, four months, & four days:
Looking Back On Six Months Of Blog Posts!
April's Blog Topics:
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. 💙 Today is my one year anniversary of me finding out I'm autistic (I can't believe it!), so in celebration of that, here are some things I've learned over the past year:
I know this is a topic most people are tired of hearing about, of talking about, but let's talk about COVID! This is a topic that I've been really looking forward to writing about, well... because I know my experience throughout the coronavirus pandemic isn't like other people's, so I wanted to share my experiences. We made it to what the entire country is calling the end of the coronavirus pandemic, but I just can't see it that way. I can't picture myself EVER seeing it that way, as sad as that is for me to admit. Yes, I still [mostly] wear a mask when I'm indoors, unless I'm eating or drinking. Yes, my immune system is perfectly functional. No, I don't have an autoimmune disorder & I don't take any immune-suppressant drugs. So, why do I wear a mask then? Well... I have a very severe case of germaphobia. I was in the bank this morning, taking care of some business with my parents & of course, I was the only one in the bank wearing a mask. It would've been physically impossible for me to work with any individual person for more than a couple of minutes if I wasn't wearing a mask. Why? Anxiety, of course! After being in her office for several minutes, the woman who we were working with asked me if I would feel more comfortable if she wore one also. Of course, I told her, "No, it's fine for you not to wear one." Even though I completely understood where she was coming from, being asked that question made me super uncomfortable. I hate that the world went back to pre-COVID times, where wearing a mask is something you just don't do. I felt like I was being looked at like I had three heads, being the only one in the bank who was wearing a mask. But, that's what I needed to do in order to access the services my parents & I needed. If I had a sprained ankle, so I hobbled in on crutches or wore a boot, people wouldn't wonder why a person like myself would need to utilize equipment like that. Because that's a physical injury that people can see, they don't wonder what's wrong with you. For me, wearing a mask makes my invisible disability visible. I look young & healthy, so I know people wonder why there's a mask on my face. However, let me also mention that many autistic people cannot tolerate wearing a mask due to sensory sensitivities. Masks can cause some autistic people to not be able to function, to have meltdowns, to have shutdowns, or all of the above. On the other hand, many autistic people are germaphobic, just like I am. COVID-19 has completely exasperated my lifelong fears of germs & illness. Living in a world with the existence of COVID is my literal nightmare. When I've told doctors, autism resource people, & anyone else I've spoken to that I'm very germaphobic, so I've really been struggling living through this time, a common response that I get is, "Yeah, I used to be too, but then I got COVID & it wasn't so bad, so I'm no longer that worried about it." Those people don't get it because COVID has absolutely nothing to do with me being a germaphobe, it only exasperated my fears. Sadly, I do not remember a time in my life where germaphobia wasn't a problem, as I've experienced an extremely intense fear of germs & illness thirty years prior to COVID-19 even being part of our vocabulary. A Germ-Obsessed Child: There was never a time in my life where I didn't have an obsession with germs. In fact, my parents will tell you that ever since I was old enough to speak, whenever they had the news on & the news-anchors were talking about an illness, whether it was about the flu season, a measles outbreak, etc., I would repeat over & over again, "What sick? What sick? What sick?...". They say that a child's personality traits really start to show when they're around two years old. I am proof in the truth behind this statement. My parents didn't know what they were in for because their little germ-obsessed toddler never lost her germaphobia as she grew up. In fact, my germaphobic tendencies sadly only intensified with age. Illness-Related Trauma: When I was six years old, I got super sick with the flu & as a result, I developed a really high fever. Not a go to the hospital high fever, but a high fever. I believe that the fever I got from the flu is what caused these extremely debilitating dizzy spells that I luckily outgrew when I was seventeen. These dizzy spells were absolutely traumatizing & they usually caused me to become extremely nauseous & vomit, as well. The only thing that ever got them to subside was sleep, but ever since I got past the napping age, I have never been good at sleeping unless it was actually bedtime. Even going to sleep at bedtime wasn't always easy. I have been to countless doctors & had countless tests done, including an abnormal EEG, in order to figure out the cause of these spells. Unfortunately, it remained a mystery to doctors. The closest we came to figuring this out was that it was probably either a migraine or a seizure variant, or both. Migraines & seizures are comorbidities that autistic people often struggle with, but I didn't know I was autistic during this time. Fear Of Dizziness Because of my history with dizziness, I have fears of all things that cause dizziness or cause issues with vestibular processing. Here are some of them:
How The Coronavirus Pandemic Turned Me Into A "Normal" Person:
When the pandemic first began in the spring of 2020, my parents joked with me & told me that now, I'm finally a "normal" person. What they meant by this was that everything the doctors were recommending we do to stay safe & healthy were habits that I've had ever since I was a young child. I didn't wear a mask or stay six feet away from people until doctors recommended we do that, but literally everything else that they recommended was already a habit, & it had been practically my entire life. My brother even jokingly told me that I should sell my hand sanitizer on eBay because it was sold out everywhere & I had a mountain of it at home. Here are some (but not all) of the things I was doing &/or feeling long BEFORE COVID-19 was a part of our vocabulary:
Things NOT To Say To Me: "COVID Isn't That Bad. It's Just Like The Flu!" The last time I came down with the flu, I was six years old & it was the time I described above. COVID being compared to the flu will only make me freak out. I get the flu vaccine every year & I've gotten every COVID vaccine I'm eligible for. People are experiencing vaccine fatigue, but I can tell you that I'm not. I wish I could get a COVID booster every four months because once it's been more than four months since my last vaccine, I no longer feel safe being around people. "You Just Have To Accept That We're All Eventually Gonna Get COVID." While I know this is true deep down, it's not something I'm able to accept. I have never had COVID at this point & I intend to keep it that way for as long as I can. When the time comes that I do eventually test positive for COVID, it's gonna cause panic. I just know it. "You Don't Have To Wear A Mask In Here. I'm Vaccinated." If I felt like I didn't need to wear a mask, I wouldn't. I don't like wearing a mask, I just don't feel safe without one. If vaccines protected us from illness for an extended amount of time, I would consider not wearing a mask. Since that's not the case, that statement only causes discomfort because it makes me feel like I'm making the wrong choice by wearing a mask. "Are You Really Gonna Wear A Mask Forever?" Asking this question really doesn't make any sense because truthfully, I probably am, unless COVID & all illnesses become nonexistent, which isn't going to happen, at least not in my lifetime. I often blame the fact that I'm wearing a mask on my grandpa because he is ninety years old & is in the high-risk group. However, that isn't the truth & I just use that as an excuse to make myself look better to people who I'd rather not share this quirk with. In closing, please remember that you'll never know for sure what someone else is dealing with, unless they come right out & tell you. If you see a seemingly healthy, young person wearing a mask, don't tell them it's okay to remove it or look at them & wonder what's wrong with them. Wearing a mask is just as okay as not wearing one. It is our personal choice & our comfort level. If I felt like it was possible for me to walk into a store without a mask covering my face, believe me, I would. I don't enjoy wearing a mask, I just have no other choice. For me, I have two choices: to wear a mask or to hibernate for the rest of my life. Is Autism Really More Common In Males?: Statistically, boys are four times more likely to be autistic than girls, but because we know so much more about autism now than ever before, we are now questioning if it is actually more common in boys or if it is just more commonly diagnosed in boys. Since it was historically believed that autism was more prevalent in boys than in girls, scientists & doctors have focused their autism research on boys. Because of this, the diagnostic criteria for autism is modeled around male behavior. What we didn't know until very recently is that autism can look very differently in girls. Since autistic girls often have different traits that do not match the diagnostic criteria for autism, traits are easier to miss & are mistaken for other things, like shyness & social anxiety, which are much more socially acceptable in girls than in boys. Girls are also more likely to mask their autistic traits & may mimic appropriate social behaviors by copying behaviors that they see in everyday life & on tv in order to fit in. For example, many girls & women force themselves to maintain eye contact by looking in between someone's eyes rather than into them if eye contact makes them uncomfortable. (I do this until a certain level of comfort with a person is reached, which is when eye contact becomes comfortable & natural for me.) Masking is something that is much less common for boys & men to do. Girls are also often diagnosed with depression &/or anxiety, conditions that frequently coincide with autism, rather than with autism spectrum disorder itself. Because scientists & doctors just began learning about how autism presents itself differently in females within the past decade, many women in their twenties & older have just now been receiving the autism diagnoses that they deserve. Many of these late-diagnosed autistic women never presented stereotypical male autistic traits. These women tended to be evaluated for & diagnosed with autism spectrum disorder after having significant problems with things in their adult lives such as treatment-resistant mental health issues, employment, friendships, romantic relationships & more (all things I struggle with). Other women were diagnosed after their child(ren) was/were diagnosed & they recognized some of the same traits in themselves. I truly believe that the reason I was not diagnosed during childhood is because of my gender. What Does Autism Look Like In Females?:
Social Deficits
Pretend Play One of the most common traits of both male & female autism is not knowing how to participate in pretend play. However, it is more likely that this struggle will be noticed in boys because girls tend to be taught from a very young age to be little caretakers, taking care of a baby doll or a stuffed animal. Because boys tend to be not taught this, struggling with pretend play is much more obvious in males. However, I only knew how to play with baby dolls & stuffed animals. When my little cousin asked me to use her plastic horses & farm animals to engage in pretend play with her, that was a struggle for me. I would often ask my little three-year-old cousin what to say or do. My aunt bringing out a craft project for me to help my cousin with brought great relief! Special Interests One of the most common symptoms of both male & female autism is having a special interest. However, male special interests tend to be very specialized & technical, where female special interests tend to be more "normal." For females, the level of intensity of the interest is what is abnormal. Because of this, it can be harder to notice the difference between a "normal" interest & a special interest. Common special interests in females are:
Wheels Many autistic children have a fascination with spinning wheels that are on a toy truck or train, for example. However, because toy vehicles tend to be boy-specific toys & I was a very feminine girl, I didn't own any toys that had wheels other than a child-sized stroller I used to push my baby dolls & stuffed animals around in the neighborhood. Miscellaneous
What Are Autism Function Labels?: Autism function labels are used by allistic, or non-autistic people, such as parents, family members, friends, caretakers & medical professionals; to describe an autistic person's abilities. If you refer to someone as having "high-functioning" or "low-functioning" autism, for example, you are using autism function labels. What Is "High-Functioning" Autism?: "High-functioning" autism isn't an official medical diagnosis, but is a term that allistic people use when talking about autistic people. When people talk about an autistic person who is "high-functioning," they are referring to someone who despite his or her autism, is able to read, write, speak, & handle daily tasks such as eating, getting dressed, & personal hygiene independently. A "high-functioning" autistic person can also live independently. People may also call "high-functioning" autistic people mildly autistic, less autistic, or something similar. These terms essentially mean the same thing as "high-functioning" autism. "High-functioning" autism is just the term that is used the most often. What Is "Low-Functioning" Autism?: "Low-functioning" autistic people are usually unable to live independently & will require support from a parent or caretaker throughout their lives. "Low-functioning" autistic people are either nonverbal or they have much more pronounced communication impairments. People may also call "low-functioning" autistic people severely autistic, more autistic, or something similar. These terms essentially mean the same thing as "low-functioning" autism. "Low-functioning" autism is just the term that is used the most often. How Are Autism Function Labels Harmful?: Autism function labels are harmful because they cause ableism, or the discrimination of disabled people. How Autism Function Labels Harm "Low-Functioning" Autistics
How Autism Function Labels Harm "High-Functioning" Autistics
What Does the Autism Spectrum Look Like?: Many allistic people would be very surprised to learn that the autism spectrum is NOT linear & the below image is absolutely NOT what the autism spectrum looks like. The autism spectrum looks more like this ↓. More specifically, this graphic is what MY autism spectrum looks like because it illustrates my specific abilities, as well as my challenges. As noted below, the more white space a particular area of the spectrum contains, the more I struggle with that particular situation or activity & vice versa. You will not be able to find another autistic person out there who's spectrum looks exactly like this because each & every one of us is different from one another. What Terminology Should We Use Instead of High-Functioning & Low-Functioning Autism?: Instead of calling us high-functioning or low-functioning, please simply call us autistic or if you need to be more specific, refer to us an autistic person with low support or high support needs. This makes us feel less judged about who we are as people, but still lets caregivers, teachers, or employers know what to expect in terms of how much support & what type of accommodations we may require. What Is "Light It Up Blue"?: "Light It Up Blue" is a campaign to promote autism awareness. People are encouraged to wear blue clothing & to post on social media using the hashtag #LightItUpBlue to raise awareness. Additionally; landmarks around the world; such as Niagara Falls, the United Nations, the Empire State Building, the White House, & state government buildings; glow blue in support of the cause. This all sounds great, right? Not so much. Why We Shouldn't "Light It Up Blue" This April:
I have had mental health challenges all my life & quite truthfully, I cannot remember a time where this wasn't an issue. A very difficult transition to college caused my symptoms to get out of control, so that's when I tried to find a medication to help me feel better. I frustratingly wasn't able to find anything that gave me relief even by the time I was in my thirties. At my appointment with my physician in mid-June 2022, she suggested getting evaluated for autism spectrum disorder. Between trying an impressive number of medications, none of which made any difference, along with other traits my physician had noticed over time, she thought it was likely that I was on the spectrum. When my physician asked me if I met my early childhood milestones on time, if I was ever diagnosed with a learning disability, & if I experienced bullying in school, all of my answers were in line with someone on the spectrum. My physician then went onto explain that so much more is known about autism now than when I was growing up. The stereotypical autistic traits are male traits, but autism can look very different in females. Sometimes undiagnosed autism in females can look like treatment-resistant depression & anxiety (something I have struggled with for many years). When there's a condition such as autism that could also be causing depression & anxiety symptoms, sometimes medications don't work like they're supposed to. I then had an aha moment & was so thankful to have such an observant physician. I am certain that my mental health challenges coexist with autism spectrum disorder, especially since these mental health challenges do run in my family, but I learned so much that day about the cause of my lifelong difficulties. I spent the summer of 2022 educating myself about autism. I read several books about how it presents itself in girls, in women, & in adults & I connected to what was in these books on so many levels. I felt like these books were written about me because they were descriptions of me throughout my life thus far, from my early childhood all the way to what I currently experience, in adulthood.
On October 20, 2022; I received confirmation of what I already knew about myself: I am autistic! More specifically, I have level 2 autism out of three levels total. The instant wave of relief I experienced that day when the evaluating psychiatrist told me that I am on the autism spectrum was absolutely incredible & was like nothing I had ever experienced before in my life. |
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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