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:
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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. 💙 Happy Halloween! Well, maybe it's a Happy Halloween to you, but it's not for me. I've never liked this haunting holiday. So, there. I've come out & said it. I don't like Halloween! Now, having said that, if you're a Halloween-loving person, that's no biggie. In fact, one of my closest friends has a Halloween birthday & I just love her excitement around this frightful day. But, for me, Halloween just isn't my day. And that's okay, too. This Is Why:
I don't dislike everything about Halloween, so this is what I do like about the holiday:
Halloween Challenges For Autistic People:
How You Can Help:
You may have heard of it, or maybe you haven't, but let's talk about what Spoon Theory is & how it applies to autistics. If you've ever heard someone exclaim, "I'm out of spoons!"; you might've been super confused. And no, (s)he didn't run out of silverware. It was Spoon Theory that (s)he was referring to. Spoonies, as we call ourselves, are people living with chronic illnesses, autism, mental health issues, terminal illnesses, disabilities, & more who use this theory to give their healthy family & friends a glimpse of what it's like to be in our shoes. What Exactly Is Spoon Theory?: Now, it's important to remember that I did not create Spoon Theory & I'm no Spoon Theory expert. I'm simply an autistic woman living with persistent, lifelong mental health issues who has benefited greatly from having a simple & concise way to explain my energy & ability levels on any given day. The Origin Of Spoon Theory: First, I highly encourage you to read the entire origin story of Spoon Theory, but here is Spoon Theory in a nutshell: Spoon Theory was originally created by Christine Miserandino, a woman with lupus. She & her best friend were at a diner late one night when her friend asked her what it was like to live with lupus. And that's when Spoon Theory was born. Christine handed her friend a collection of spoons as a concrete way to illustrate what it was like to live a day with lupus. "I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted." Every chronically ill, autistic, mentally ill, terminally ill, & disabled person begins each day with a limited number of spoons. The number of spoons most spoonies begin the day with is twelve because that's how many spoons Christine handed her friend that night. And every task that you do throughout the day takes up one or more of your spoons. How many spoons each task takes up depends on how difficult the task is for you to do. Depending on the person & his or her illness or disability, certain activities may allow spoons to be replenished. I'll talk more about that later on in this blog post. Remember that an activity such as getting ready for work has to be broken down into smaller steps. Getting ready for & getting to work usually contain all or most of the following steps for most people:
Once a spoonie runs out of spoons, (s)he has no energy left for the rest of the day, so we have to make choices about how we're going to use our precious spoons. For example, are you going to shower or eat breakfast today? If you go to the grocery store after work today, will you have enough spoons left to cook? Healthy people have the luxury of not needing to make these choices because they wake up each day with an infinite number of spoons. While the Spoon Theory was originated by a woman with lupus, it applies to so many other illnesses & disabilities out there as well. How Does Spoon Theory Apply To Autistics?: Autistic people wake up each day with a limited number of spoons. Let's continue to use the number twelve. Sometimes the number of spoons we wake up with can be lower than what is typical. For example, if we had a meltdown yesterday or if we didn't sleep well, we might hypothetically start the day with eight spoons, no spoons, or a negative number of spoons rather than the typical twelve. We have to plan our days very carefully in order to conserve our spoons. We face unique struggles because we live in a world that wasn't built for us. Navigating a neurotypical world uses up our spoons at an astronomical rate. The tasks that I find to take up the most amount of spoons tend to involve interaction with people. Also, because of my vestibular sensitivities, I live my life in fear of germs & illness, so tasks that involve cleaning or being in close contact with people I don't know also take up a lot of spoons. The below image outlines how many spoons I use up for many of the typical tasks in my daily life (although some tasks are hypothetical). As you can see from the below image, many of us, myself included, consistently run on a spoon deficit. It would be impossible for me to only use twelve spoons in a day. I try to conserve my spoons as much as I can, but so many daily tasks take up such a significant number of spoons that spoon conservation is impossible. This is why autistic burnout & meltdowns are so common in the autism community. We are quite simply out of spoons. Most days, I wake up feeling like I am out of spoons before I'm even out of bed because the limited number of spoons I am given each day just isn't enough. When you've run out of spoons every single day of your life, it really takes a toll on you. Because I am consistently spoon-deficient, I try to avoid the majority of tasks that take up five & six spoons. The only task in this group of tasks that I passionately love doing is taking care of my grandfather. Autistic people do not handle stress well & because caregiving is very stressful, it takes up a lot of spoons. However, it also can be very rewarding & it gives me precious time with my grandfather, which I love. Spoon Replenishment: While I am consistently running on a spoon deficit, I feel lucky that sometimes, my spoons can be replenished. This isn't the case with all spoonies. The below image outlines how I personally experience spoon replenishment. Certain activities are much more effective at accomplishing this than other activities. Sleep is something that helps replenish spoons for many spoonies, but that isn't something that helps me. I have many other things that replenish my spoons though, which I am grateful for. Because my spoons are used up much more quickly than they are replenished, this only helps my spoon deficit ever so slightly. Why Does Spoon Theory Help?: I love Spoon Theory because it gives our community a common language that explains our daily energy levels in a simple way. It also helps our healthy & neurotypical family & friends understand what their ill or disabled family & friends are facing in a concrete way. Sometimes, it may look to others that we are lazy when that isn't the case at all. We are simply out of spoons. Without this language & understanding, many of us would be using more of our precious energy than we had left explaining to our family & friends that we are all out of energy. (How ironic is that?!) If you’re new to Spoon Theory, I hope that this explanation helps you to see the struggles that us spoonies face on a daily basis in a new way. And if you know me on a personal level, I hope this helps you understand me better, too. 💙 Happy Independence Day! Due to the holiday, we're gonna spend some time today talking about the difficulties that fireworks can pose on autistic individuals & their families. For many people, fireworks are magical & fascinating, filling up the night sky with mesmerizing colors & patterns. The perfect way to cap off a fun day full of patriotic festivities, whether spent at a picnic, a barbecue, the beach, or by the pool. However, this isn't the case for everyone. One of the groups of people fireworks can effect negatively are autistic individuals. My Personal Experiences With Fireworks: As a child, I didn't have the sensory sensitivities that autistic children stereotypically have. Because I was generally not bothered by most sounds or lights, fireworks didn't bother me the way that they typically bother many other autistic individuals. However, going to firework displays was still an incredibly traumatic experience for both me & my family. The reason for this was simply the time of day that fireworks happen. Obviously, fireworks happen at night, but due to the dizzy spells I endured from the time I was six years old until I was seventeen years old, I would almost always have one of those dizzy spells whenever we went to see fireworks. Dizzy spells were often triggered by tiredness, so they were much more likely to happen during nighttime activities than during daytime activities. This made nighttime activities, including something as simple as going out for dinner, very stressful for me & my family. I constantly felt like I was ruining my family's fun because of something I could not control. So, I often found myself trying to hide my dizzy spells for as long as I possibly could & being afraid of telling my parents that I could feel a dizzy spell coming on. If you would like to read more about my experiences with dizzy spells, I go into more detail about them in my previous blog posts about the coronavirus pandemic & about vestibular processing. As an adult, my after-dinner routine consists of taking a shower, getting in my pajamas, & then snuggling up with my two dogs for the rest of the night. In fact, most nights, I'm in my pajamas prior to 8:30pm. The idea of going out into a crowd of people, being eaten alive by mosquitos, being away from my dogs, & not being able to wash off the germs of the day until late at night sounds incredibly unappealing, in most situations, except if I was visiting family from out of town or vice versa or if I was at Disney World or someplace where the fireworks display was absolutely spectacular. Fireworks Are Fun!
Some autistic people really enjoy fireworks & being someone who finds fireworks enchanting & magical, I am one of them! What I don't like about fireworks is the fact that due to the time they happen, they are extremely disruptive to my nightly routine. Plus, it's so much hassle to get there & there is so much waiting involved for a display that is usually relatively short. But They Can Be Painfully Loud... And I really mean this. I am not an autistic person with auditory sensitivities, but to some autistic people, this can be incredibly overwhelming. Even though to you, the sound is far away in the night sky, your autistic loved one may be hearing it as if the fireworks are exploding in his or her own ears. ...And Painfully Bright! Yes, fireworks can actually hurt. All of the bright sparkles that make fireworks look so cool & awe-inspiring, as well as the strobe-like effects they create, can cause big problems for autistic people. Once I outgrew my childhood dizzy spells, which were often triggered by certain frequencies of lighting, I no longer had sensitivities to lights. Many autistic people hate bright lighting, making fireworks an overwhelming & difficult experience for them. Just like certain frequencies of lighting triggered my childhood dizzy spells (which likely were a migraine or a seizure variant), these same types of lighting can trigger seizures in autistic people, something many autistic people struggle with. While I've never heard of someone having a seizure due to an overload of fireworks, merely knowing the effect that certain types of lighting has on certain people can be very overwhelming & cause a lot of anxiety for them. The Crowds & The Music Are Loud, Too! Firework displays always include people & almost always include music. Loud voices & loud music can be just as hard on autistic ears as fireworks are. Also, because of our difficulties being able to read people's tones of voice, it can be hard for some autistic people to tell the difference between voices raised due to excitement from voices raised due to anger. This gives us a whole other level of anxiety that neurotypical people do not experience. Weather Sensitivities: Another consideration to take into account is the weather. Some autistic people cannot tolerate humidity. Others have sensitivities to water, so they would have issues if it's raining. Personally, I have an issue with raindrops touching my face, so I'm always shielding my face from rain! How You Can Help:
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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