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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One of the last things I learned about when I became aware that I am, in fact, autistic, are the problems autistic people have with self-care. Now, I can tell you that in some ways, being as germaphobic as I am is a real blessing because that is why many of these self-care tasks actually get completed. If I wasn't so finicky about cleanliness, being a hygienic person would be much more of a problem for me. All my adult life, I have had to complete self-care tasks in a certain way in order for them to get done at all, or in order for them to get done in a timely manner, depending on what the task is. I know that if you are an allistic, or a non-autistic person, you are probably wondering what exactly makes self-care so difficult. This is why.
Let's take a moment now to talk about various self-care tasks.
Showering 🚿 Steps Involved:
That is over SIXTY steps (because some of these steps are actually two or three steps) that need to be completed in order to take a shower every night. Doing that EVERY single NIGHT is EXHAUSTING. I take a shower immediately after dinner every single night in order to ensure that my shower is completed in a timely fashion. If I didn't do that autistic inertia would get in my way. I don't use a hair dryer, so I like to shower several hours before going to bed. I don't use a hair dryer because:
The other night, my mom came knocking on the door after I had already taken my clothes off because she had taken her glasses off & couldn't remember where she put them. And she couldn't see to find them. She wanted ME to find them for her of course. I told her I couldn't because I had already taken my clothes off in preparation for my shower. Putting my clothes back on after I had taken them off just wasn't possible due to my executive functioning difficulties & autistic inertia. Asking a neurotypical person to do this might annoy her or him, but for an autistic person like myself, putting my clothes back on after I had taken them off would make it so my shower take many more hours to get completed. And following the routine of getting my shower done by a certain time is EXTREMELY important to me. If I wasn't so germaphobic, my shower might not get done at all with such an interruption, but I have certain rules that I follow. They are:
If my dad hadn't been home & able to find my mom's glasses for her, I know this would've turned into an ugly fight. The entire mindset of not being able to put clothes back on after taking them off is a foreign concept for neurotypical people & is one of the many things that make living in a neurotypical world so stressful & so frustrating. Especially when those people just tell me I'm strange & they don't take the time to understand the way I live or WHY I do the things I do. By the way, my mom's glasses ended up being in her bathrobe pocket, a location I would've NEVER looked in, even if I HAD tried to find them. Childhood Difficulties: Growing up, my dad continued to wash my hair in the kitchen sink until a very old age because I just couldn't tolerate doing it on my own. My mom told the neuropsychiatrist who evaluated me for autism that washing my hair when I was a child was incredibly difficult because I would scream if even one droplet of water made it into my eye. Eventually, my parents forced me to wash my own hair in the shower & that was so, so, SO HARD. And it caused so many fights & so many meltdowns. Putting my head under the shower water felt no different than as if someone was pouring rubbing alcohol over my head. And then it seeped under my eyelashes & into my eyes despite the fact my eyes were squeezed shut. No joke. As time went on, I came up with the coping mechanism of using a face cloth to shield my face from the water & that is something I still use to this day. This is why I decided to call my blog Splashed With Water. I talk more about it in my first blog post, if you would like to go back & read it. Rather than boring you, by giving you the step-by-step breakdown of the rest of the self-care tasks, I'll just talk briefly about the following: Dressing 👚 I have to get dressed the second I wake up because with autistic inertia, it will get to be two o'clock in the afternoon & I'll STILL be in my pajamas. Brushing Teeth 🪥 Until I was in middle school or high school, I used a children's strawberry-flavored toothpaste. My mom forced me to change to a normal "adult" toothpaste at some point around the teenage years. Because it's what normal people use. Until I got more used to it, the minty flavor made it feel like my mouth was literally on fire. 🔥 And I just had to live with it. When I was talking about this during my autism evaluation, my evaluating neuropsychiatrist asked me why I couldn't use a non-mint flavored toothpaste. My response? My mom told me I had to use mint because that's what EVERYONE uses, that's what "normal" people use. I always felt like I was abnormal & needed to force myself to be "normal" in order to be accepted. And my efforts didn't work because I STILL wasn't accepted. I still can't use mouthwash, even though my dentist recommends it because the mint is too strong & it burns my mouth. Mint is a flavor that autistic people tend to be way oversensitive to. Now it all makes sense to me, but my mom still makes fun of me because I adamantly dislike mint-flavored anything, including ice cream & chocolate. How could someone dislike certain flavors of ice cream & chocolate? 🤷🏻♀️ Using The Toilet 🚽 Due to autistic inertia & executive functioning difficulties, I have great difficulty getting up to use the toilet if I'm not already in the standing position, so if I happen to be in the standing position, I literally act like it's a bathroom emergency when it isn't because I know that if I didn't do that, I'm not going to use the bathroom until I take a shower that night, many hours later. I know how ridiculous that sounds, but it's absolutely true. When I was a child, I wouldn't flush the toilet after using it because I was completely terrified of the sound it made. I also wouldn't use the bathroom if my mom happened to be doing laundry at that time. The spontaneous & LOUD sound that the washer & dryer made would scare the living daylights out of me! 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. 💙 When I was in third grade, my mom got a job as a classroom aide at the elementary school I attended. And that's where she still works. Today, when she came home from work, my mom told us that one of the school busses was thirty minutes late this morning. One of the boys at her school told my mom that the reason why that bus was so late was because the children on the bus were so poorly behaved that the driver had to pull off the road to assign seats. Later on that day, my mom found out from one of the teachers she works with that there is also some bullying going on, on that same bus. The bullying had gotten so bad for a certain boy that his mom is afraid of sending him to school on the bus. Another boy does things to him, like pour his water from his water bottle onto this poor boy's head! I always try to link the things that happen in my everyday life to my experiences as an autistic woman. So, I wanted to take this as an opportunity to tell you about what it was like to ride the bus to school as an autistic student, long before I knew I was autistic. From the title of this blog post, you probably already know that I absolutely HATED riding the bus to school. Why I HATED Riding The Bus To School: I Was Afraid Of Getting On The Bus: When the bus pulled up to the bus stop, all the children ran to the bus because they wanted to get the BEST seat. The running children scared me. I have struggled with my gross motor abilities my entire life (this is a commonality among autistic people/children), so every day when it was time to get on the bus, I thought I was going to get trampled & injured from running children. I could feel a rush of adrenaline running through my body every time it was time to get on the bus. Being someone who has always avoided adrenaline-inducing activities, this felt absolutely terrible! I Usually Had No One To Sit With: This is a pretty self-explanatory reason, but when you're autistic, you tend to have trouble making & keeping friends. In the beginning of the school year, I would sometimes have a neighborhood girl to sit with, but as the year went on, that girl went on to make her own friends who she wanted to sit with on the bus. And where did that leave me? Alone of course. Not only was it embarrassing, but it made me so sad that no one wanted to be my friend. There Were Older Children On The Bus: There's a big difference between a first grader & a fifth grader. Whenever I was on the young end of whatever school I was in, I felt like being around older children was dangerous. I mean, I even felt like it was dangerous being around children my own age, so of course being around older children was even more frightening! One Of My Bus Drivers Was Scary: My middle school bus driver was crazy, mean, & scary! She often started driving before all the students were seated. Because of my gross motor difficulties, this was terrifying for me. She would also do things like yell at whoever had a dirty water bottle on the floor by his/her seat, being seemingly unaware that water bottles roll when the bus moves, so whoever she was yelling at likely wasn't responsible for leaving their dirty water bottle on the bus. It Was Loud: I didn't have noise sensitivities like the typical autistic student did, but I was a calm & quiet girl who preferred calm & quiet environments, rather than environments with excitable, yelling children. I Was Afraid Of Getting Off The Bus: Again, children moved much too quickly for my comfort level. Because of my gross motor difficulties, I have always had to take stairs slowly & cautiously. However, when it was time to get off the bus, I thought I was going to get trampled & injured from running children. I could feel adrenaline rushing through my body every time it was time to get off the bus. Having been an adrenaline-avoider my entire life, this felt absolutely terrible! I Was Afraid Of Missing The Bus: Again, because of my gross motor difficulties, it was hard for me to get to the bus at the end of the day quickly enough. This was particularly stressful in high school, when all of the busses were lined up at the front of the school simultaneously rather than being called over the loud speaker. There was never enough time for me to gather everything I needed in order to do my homework that night AND make it to the bus on time without stressing. If I were to miss the bus in high school, it would be particularly bad because it would mean that I would need to wait a whole extra hour & a half at the school in order for my mom to pick me up to go home, since she didn't get out of work until three o’clock & the high school was a twenty minute drive away. I don't think that ever happened, but the idea of it EVER happening terrified me. Just being in that school drained every ounce of energy I had that I couldn't wait to run away from the school building at the end of the day! (I'll tell you more about my experiences with school in a future blog post.) This is one of the many reasons why I was so relieved when I got my driver's license. Why I Never Struggled With Bullying On The School Bus:
I experienced very INTENSE bullying in school, but never had any problems with bullying while on the bus. The short reason why is simply because I always sat in the first few seats of the bus. The exact place where no one ever wants to sit on a school bus. If someone had ever hypothetically forced me to sit in the back of the bus, I would've been absolutely terrified because that's where the bullies sat. Even the kids who sat back there who were not bullies tended to be friends with them. The wild, loud, obnoxious athletes sat in the back of the bus. I generally didn't like athletes, unless they were runners, were part of the track team, or were tennis players. I wanted to do everything I could to stay away from bullies & everyone who associated themselves with them. Because I sat in the front of the bus, that was the only part of the day that bullies didn't bother me. They didn't go out of their way to bother the quiet, loner girl sitting in the front of the bus because she didn't want to be bothered by the bullies, among a plethora of other reasons. I was so glad about that. I sat in the front of the bus from when I was in kindergarten until I stopped taking the bus, when I was a high school sophomore. I Wished My Mom Drove Me To School! Within the past few months, I made a comment to my mom about how I hated riding the bus to school & I wished she drove me. I never understood why I had to take the bus to school. I assumed my mom had some very good reason for not driving me to school. Or that it was just too much trouble. I have always believed that I was too much trouble & caused too much worry. To my surprise, my mom never knew how much I hated riding the bus to school & she told me that she would've driven me if I had asked her to, particularly when I was in elementary school & I attended the same school she worked at. I wish I had known this twenty-five years ago. I have always been a meek person, as a child AND as an adult, both inside & outside of my family. I was really pushed by my special education teacher to advocate for myself when I was a junior & a senior in high school, in preparation for college, but speaking up for myself is & always had been difficult for me, particularly in my younger years. I know that is also likely why that despite all of the intense bullying that I endured, I never told anyone how painful it was, how much it bothered me. Issues I dealt with while I was in high school, & even while I was in middle school & while I was in elementary school are still affecting me well into my thirties. I'll share more about my experiences being a victim of such intense bullying in a future blog post. You probably know that the five senses are sight, hearing, touch, smell, & taste, but did you know that there are actually eight senses? The three hidden senses are: The Vestibular Sense: Vestibular receptors, located in our inner ears, help us process movement & balance. The vestibular system helps us to distinguish between speed & the direction of movement. Many autistic people are either vestibular under- or over-responders. People who are vestibular under-responders seek intense or prolonged vestibular stimulation & may enjoy frequent rocking, swinging, bouncing, jumping, or other activities involving intense movement. People who are vestibular over-responders may react negatively to a wide range of vestibular input. They are often prone to motion sickness & have anxiety during activities that involve movement through space, such as walking down the stairs. They also tend to struggle with body control & coordination. I am someone who struggles a great deal with vestibular sensitivities. This is why numerous times throughout this blog, I have referred to vestibular processing issues & anxiety around certain things causing dizziness. Because I keep referring to vestibular sensitivities, I thought it would be good to take a step back & actually explain what I mean by that. The Proprioception Sense: Proprioception receptors, located in our muscles & joints, provide information about where our bodies are in space. This system impacts our sense of body awareness & coordination. It also helps to create smooth movement. Many autistic people are either proprioception under- or over-responders. People who are proprioception under-responders struggle with knowing how much pressure to apply. They may break pencils or use too much pressure when shaking someone’s hand, for example. They may enjoy jumping, bumping, & crashing into people & objects. They tend to be unaware of safety & can be accident-prone. Children tend to prefer rough play & seem to be constantly wrestling with siblings or other children. They tend to stand too close to others & touch them without permission. And they may crave pressure & bear hugs. People who are proprioception over-responders may are easily overwhelmed by touch & movement. They tend to avoid physical contact, like hugs & other types of contact or pressure. They also tend to become anxious in crowded spaces or when standing close to others. Children who are proprioception over-responders tend to avoid physical play & appear timid around others. They also may dislike slides, swings, other playground equipment, & phys ed class in school. I also struggle with proprioception sensitivities, but because I am now an adult, these issues are much less bothersome now than they were when I was a child. The Interoception Sense: Interoception receptors, located on our internal organs, provide us with information about our internal body & emotional states. These receptors tell us when we're hungry, thirsty, hot, cold, in pain, or needing to use the bathroom. They also tell us if we're happy, sad, or anxious. People who are interoception under-responders may be unaware of pain & temperature signals, not know when they're hungry or thirsty, be unaware of the urge to eliminate until it is urgent, or have alexithymia, otherwise known as the inability to identify his or her own emotions. People who are interoception over-responders may always be hungry, thirsty, or having to use the bathroom. They also tend to experience more pain & pain lasts longer. It is common for over-responders to have frequent sicknesses because even the mildest of illnesses cause them to feel terrible. Stereotypical Sensory Sensitivities:
In movies & on tv, you'll notice that autistic characters are often very sensitive to light & sound. Because of this, they often wear sunglasses, noise-canceling headphones, or ear plugs to relieve themselves from intense sensory input. Autistic people also tend to be very sensitive to touch, where they can only tolerate clothing made from certain types of fabric & they cannot tolerate tags in their clothing or seams in their socks. It is also very common for autistic people to dislike being touched. Lastly, autistic people commonly dislike very strong flavors in the foods they eat. They tend to not like spicy, sour, or minty food. The beige food diet is common for autistic people. People who prefer this diet stick to eating only food that is beige in color, such as plain pasta, bread, & chicken nuggets. My Sensory Sensitivities: I don't experience this world as a stereotypical autistic person, in the sensory sense. Most sensory sensitivities that are common to autistic people are not issues for me. In fact, I was not aware of many of my sensory sensitivities being at all related to autism until I began learning more about autism, as I was pursuing a diagnosis. Until pretty recently, I thought that what I was experiencing were quirks in my likes, dislikes, & behavior. The sense that is definitely the most sensitive & bothersome for me is the vestibular sense. Sight: I do not have any visual sensitivities. Bright lights do not bother me, like they tend to bother the stereotypical autistic person. However, when I was growing up, certain frequencies of lighting would bother me because they caused dizzy spells, which you can read more about in my previous blog post about how the coronavirus pandemic turned me into a "normal" person. For example, the first time I ever successfully ate in a Rainforest Cafe, I was in my twenties. My dad & I were visiting family in Texas & we were in San Antonio for the day. We wanted to eat lunch along the River Walk & the restaurant everyone decided to eat at was the Rainforest Cafe. Something about the atmosphere in that restaurant caused dizzy spells because this was the first time I had ever eaten in that restaurant without getting sick. Because of my history with that restaurant, both my dad & I had anxiety about eating in there, but it was a success! I think it was probably the Rainforest Cafe's lighting that was the issue, but I don't know for sure. Also, while I don't have issues with bright lights, I do have issues with blinking or flashing lights & lights that are moving, particularly in circles. That is more of a vestibular issue though, which I'll discuss more below. Hearing: I do not have any auditory sensitivities. In fact, I really love listening to loud music! Touch: I do not have any of the stereotypical tactile sensitivities involving the clothing I wear. I can generally wear all fabrics of clothing & I am not bothered by tags or by the seams in my socks. I am sensitive to the sheets on my bed touching my feet though, so I have to sleep with socks on. However, as I mentioned in my first blog post, I am very sensitive to water touching me, particularly on my face & in my eyes. Because of that, I can't wash my face with soap in the sink. I have to use a washcloth instead. I also dislike the feeling of breezes. For example, I don't drive with the windows open & I actually point the vents away from the driver's seat in my car. I am also picky about who touches me & how I'm touched. I love experiencing physical affection from family & people I'm close with. However, hugging people that I do not have a certain level of established comfort with is uncomfortable. I also greatly prefer hugs over kisses & dislike romantic touch. I remember that on the first day of school when I was a sophomore in high school, my biology teacher put her hand on my shoulder as I was walking to my desk. I disliked that so much that I couldn't stop thinking about that for the whole rest of the year. If she had done that after I had an established relationship with her, I wouldn't have thought anything of it & it probably would've even made me feel good. But, because it was the first day of school & I didn't have a relationship with this teacher, it really bothered me. Smell: I do not have any olfactory sensitivities. Taste: The gustatory sense is the one sense where I am a stereotypical autistic person. I dislike strong flavors of food & I tend to stay away from spicy & sour food. If I'm eating in a restaurant & the waitress asks me if I would like a lemon in my water, I always decline it. In cases where I am not asked whether or not I would like a lemon & my water arrives with a lemon in the glass, I always take the lemon out. I also don't like mint, even in chocolate or in ice cream! I tolerate it in toothpaste though. Lastly, I really like my drinks cold (with A LOT of ice) & my food hot (temperature-wise). Vestibular: The vestibular sense is the sense that is by far the most sensitive & interferes with my daily living the most. In fact, that is why the graphic I chose to use for this blog post is supposed to resemble spinning. I am definitely a vestibular over-responder & I have a lot of fears that are all caused by this sensitivity. I listed many of these fears in my previous blog post about how the coronavirus pandemic turned me into a "normal" person. I could write a novel about everything that causes dizziness, so I tried to pick the things that stuck out the most in my mind. I know what I generally can & can't handle, so I either try to avoid certain things or I use coping mechanisms to deal with certain situations that most people would think nothing of. This is also why I don't know how to ride a bike. Embarrassing, but true. An example of a coping mechanism I use is how I deal with glass elevators, which really bother me. I have learned to find a screw or another stationary object inside the elevator to focus my eyes on until the elevator stops moving. An example of a situation that caused vestibular oversensitivity took place at a family wedding when I was in middle school. My mom's cousin's husband wanted to dance with me & took me to the dance floor. I remember really struggling with that dance because he didn't know to not spin me & I wasn't comfortable enough with him to tell him to stop. My grandpa, who I call Gung-Gung, took me to dance right afterwards & he didn't spin me because he knew how sensitive I was. The difference & the relief that I experienced when I danced with my Gung-Gung was phenomenal. Proprioception: I have significant proprioception sensitivities, but luckily, these things no longer affect my adult life. When I was a child, I felt unsafe on playground & climbing equipment if other children were also using it. I was also unable to engage in age-appropriate physical play with other children. Phys ed was traumatizing. In fact, what I remember about my elementary school phys ed teacher is that she scolded me for running away from a fast-moving soccer ball & she didn't scold my peers for laughing at me. I was truly terrified of that ball & I was only doing what I could do to protect myself. In high school, the transition between classes & the transition from class to the buses or the parking lot was terrifying because I thought I was going to get hurt from navigating down a staircase among a fast-moving stampede of teenagers. Interoception: I do not have significant issues with interoception, but I occasionally will experience alexithymia. I don't have any trouble identifying intense emotions, but I sometimes will have difficulty distinguishing between closely-related emotions or more neural emotions. 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. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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May 2024
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