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. 💙
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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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