It is no secret that autistic police brutality is a real problem. From beatings & violent, wrongful arrests to deadly shootings; the aggressive force police use against us, autistics, is our unfortunate reality. In fact, I DON'T FEEL LIKE POLICE OFFICERS PROTECT ME at all, but to be quite honest, it is the exact opposite— I FEEL LIKE I HAVE TO PROTECT MYSELF FROM POLICE OFFICERS. When I look at police officers, I see the grownup versions of my high school bullies. I knew for a fact that the majority of the guys who bullied me in school, the guys who made my high school, my middle school experiences a living hell were going onto college to study criminal justice to become police officers. It does make sense. The tough guys in school. The guys who bullied the quiet, meek girls like myself. They have the exact right type of personalities, the desire & the thrill deep inside of them to want to catch the bad guys. Of course they want to become cops! I have been absolutely petrified, absolutely terrified of police officers my entire life & that is the main reason why. In my mind, POLICE OFFICERS ARE BULLIES, people who misunderstand me, people who mistreat me, people who don't treat me like a human being. And no one, no situation has ever proven me wrong. Interacting with police officers causes me so much stress that my autistic traits become much more exasperated, much more visible than they are typically. But, even with how exaggerated my autistic traits become, I still don't "look autistic" in a stereotypical sense. I spent the majority of my life not knowing I was autistic, but despite that, I still knew that my interactions with police officers were dangerous. While I never act in ways that are considered "typical," that is exaggerated exponentially when I'm faced with high-stress situations, like when I'm in the presence of law enforcement personnel. And when police officers see someone not acting "typical," they often assume the worst & react in ways that put the life & the well-being of an autistic person, such as myself, at risk. I now know that the kind of stress police officers trigger inside of me causes autistic shutdowns. Before I knew I was autistic, I knew that I shut down when in the presence of police officers, but I had no explanation as to why that was. During an autistic shutdown, I more often than not become nonverbal, meaning, even if I wanted to talk, it would be impossible for me to make the words come out. And if I am able to talk during an autistic shutdown, I don't have control over what I am saying, my words often not making any sense. Acting in this way when conversing with police officers is extremely problematic because a person who acts like this is typically on drugs. I'm not on drugs; I never have been & I never will be. It's being autistic that makes me act this way. On top of that, it takes an extremely long time for me to process information & it takes exponentially longer when I'm highly-stressed. So, when spoken to by a police officer, I am often non-responsive. Not because I don't want to respond, but because I physically can't. I simply haven't had enough time to process whatever was just said to me OR that I was spoken to at all. Having an extremely long processing time is very common with autistics, but again, it is also very common with drug users. During the few interactions with police officers I've had in my lifetime, I have been told every time that there was something off about me, that they thought I was on drugs when they first interacted with me. It would have been SO helpful to know that I was autistic at the time I had those interactions rather than for those police officers to automatically assume that I was on drugs. The fact that it is automatically assumed that I am on drugs when I'm not is awfully troubling. This is why soon after I received my autism diagnosis, I designed myself an autism wallet card. This card explains that I am autistic, what autism spectrum disorder is, as well as certain behaviors that I may exhibit that others will likely perceive as unusual, but they are actually very typical behaviors of an autistic woman. I also wear a medical alert bracelet that contains my name, my diagnoses, & an emergency contact number. Plus, it states that I have a wallet card. I did this because I know that it isn't safe to reach for something without asking the police officer for permission first. But, since I often have trouble communicating verbally with police officers, I needed something that would allow me to safely communicate that I'm autistic & I have a wallet card without needing to speak. The reason why I have an autism wallet card & wear a medical alert bracelet is to protect myself from police officers, something that shouldn't be my job or my responsibility to do. Not only is a police officer's job to protect us, but I shouldn't have to disclose my disability in order to be treated with respect or to keep myself safe. My autism wallet card is pictured below (click on it to view it larger). Now, police officers aren't purposely harming autistic people. They simply aren't educated about how to recognize autism & the different behaviors autistic people exhibit. For example, when police officers see a person:
Autism Training & Education:
Police officers across the country & around the world are just not being properly educated or trained on how to treat & interact with autistic individuals. In fact, the type of & the amount of autism training that police officers receive is variable in different police departments in cities across the country. Plus, it's usually voluntary, not mandatory. Another problem is that the education police officers receive on autism tends to be tacked onto the end of the training on another topic. When this happens & only a short discussion is had about autism, how are police officers supposed to get the training, we, autistic people so desperately need them to have? On another note, it's hard to even pinpoint what constitutes as effective training. There is very limited research on how well various kinds of training programs work & ineffective training does more harm than good. There is also some research that suggests that while proper autism training makes police officers understand autism, it still doesn't make them any less likely to use force on autistic people. There really needs to be police training on autism that is standardized across all departments nationwide. However, some experts & advocates say that the best way to decrease violence is to minimize interactions between police & autistic people altogether. That just doesn't seem like a viable solution to me though, especially for autistic people like me, who drive. The Blue Envelope Program: The Blue Envelope Initiative represents a collaborative effort aimed at fostering a safer & a more understanding environment for autistic drivers during motor vehicle operator interactions & traffic stops. This program was just introduced in Massachusetts, the state in which I reside, earlier this month. It involves a Blue Envelope, which is intended to hold a driver's essential documents— a license, the car's registration, & a contact card. However, the significance of this envelope isn't that it is just a storage solution. This envelope features critical communication guidelines on its exterior, specifically tailored to assist law enforcement officers in recognizing & adapting their approach when interacting with a autistic drivers. While the thought behind this program is great & it shows that Massachusetts is trying, as an autistic driver, I don't love everything about the Blue Envelope Program. This is why I have a problem with the Blue Envelope Program:
Also, ever since the Massachusetts Police Department announced the introduction of the Blue Envelope Program, I have been reading numerous comments online from allistic people about how people who require a Blue Envelope in order to have simple conversations with police officers shouldn't be allowed to get behind the wheel. These comments are extremely hurtful & extraordinarily ableist. The people who made these types of comments clearly don’t understand autism or how it impacts people. I probably will get a Blue Envelope to keep in my car only because Massachusetts police officers recognize its purpose. But, it will either remain empty or I will put a few of my autism wallet cards inside of it. I don’t love the idea of keeping my driver's license anywhere other than my wallet. When Interacting With Police Officers, Autistic People May:
Key Facts About Autism, Disabilities, & Police Officers:
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Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people. 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:
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! WELCOME to the first Autism Acceptance Month blog post of 2024! Today, I wanted to take a few steps back & go over some autism terms & what they mean. I use many of these terms throughout my blog & I try to provide definitions as I write. It's always good to take the time to pause & review what some of these terms mean though. And there's no better time to do that than when we're kicking off Autism Acceptance Month! Important Autism Terms & Definitions:
I am typically reminded several times a week that I am autistic. What I mean by that is things are constantly happening in my life that I know wouldn't happen if I was allistic, or if I wasn't autistic. When these things happen to me, I tend to say in my head, "[This particular thing] happened because I'm autistic." & then I feel all sad & mopey on the inside. I really wish it wasn't this way because it's part of what makes being autistic feel so disabling. But, I blog about my life. And this is the type of thing I deal with every day. This my real life that I'm sharing with you, so here we go. This is the story of how purchasing a new winter coat reminded me that I am in fact, autistic. All winter long, the threads in my winter coat have been repeatedly breaking, leaving large gaping holes behind. Rather than continuously repairing the damage, I decided that it was time for a new coat. This coat is very old, anyway. The best time to purchase a winter coat is at the end of the season, when everything is on clearance, so now is the PERFECT time for a new one. The task of purchasing a new coat that I will wear almost daily for almost half the year is overwhelming to say the least, especially for an autistic person such as myself. These are the three main reasons why:
The Return Process:
This is where it gets really complicated. I purchased these two coats from Walmart's online marketplace. So, it wasn't actually Walmart who I bought the coats from, but I could return it there. I kept the deep purple coat in my car for about a week & a half, so that I wouldn't have to remember about it on the day I actually needed it. Walmart is a close drive for me, but one of my dog walking clients lives less than two miles from Walmart, so I wanted to return this coat on a day that I didn't have to go anywhere after walking this particular client's dog. It took twelve days before I had time to go to Walmart after walking this client's dog. My entire life is based around doing things in the most efficient manner, so that whatever I do outside of my home takes up the least amount of time possible. Because of my depleted energy levels, as well as my executive function difficulties, doing all my errands on a single day when I'm already in the area for another reason (such as visiting a client's dog or cat) is what works best for me. Anyway, after parking my car, I took the deep purple coat (still in the bag it was shipped in), into Walmart & found the customer service desk. The older woman who helped me was incredibly grouchy. Right away, she complained about the size of the coat (what winter coat isn't large?!) & to be completely honest, I was pretty intimidated & frightened by her. I showed her the barcode on my phone that was connected to the coat I wanted to return & she scanned it. But, I was really confused because she kept making comments about how the coat I was returning wasn't red. I never purchased or received any red coats, so I had no idea what she was talking about. I was scared of her though, so I just let her do her thing & I didn't speak up. She printed out a receipt with the coat's tracking number on it & the amount that I would be refunded. I looked the receipt over as I was walking away because I never trust that people are doing their jobs correctly. I was glad that I checked because the refund she issued me was for the incorrect amount. The coat I was returning was $5 more than the coat I was keeping. And the refund I received was for the coat that was at home! I went back to the customer service counter to ask her about it & she told me that the coat I gave her wasn't red. It was then that I realized why she had been talking about a red coat. 💡 The packing slip inside the shipping bag said that I purchased a red coat & a purple coat. Red wasn't even a color option for the coat I had purchased. I was SO confused by this! ⁉️ I had never even looked at the packing slip because I received exactly what I ordered. The woman returned the purple coat (which was at home) because the coat I gave her wasn't red. When I showed her the picture of the coat on my phone with the price I paid for it, she yelled at me & told me I should've shown her that from the very beginning. I thought I did though because I showed her the barcode, which she scanned & I would think that the barcode would tell the customer service person which coat I was returning & how much to refund. ⁉️⁉️ The only reason I didn't question the customer service woman originally was because I was intimidated & scared. I have lived my entire life having to endure pervasive mistreatment from everyone around me & I am quite certain that it has caused post-traumatic stress disorder, something that more than 40% of autistic individuals struggle with. The reason I didn't speak up was because I was simply autistic & afraid. In the end, a much kinder & younger woman (who was also working behind the customer service desk) called the seller I had purchased the coats from to get the remaining $5 refunded. Going to the store to return something is such a simple task, but being autistic turned it into such a big headache. And it was all because the person helping me wasn't kind. This is something that could've been avoided completely if the person helping me had exhibited kindness & had not been so intimidating. This is the type of thing that I deal with on a daily basis because I am living with autism. For those of you who are also autistic, I hope this story helps you feel less alone. And for those of you who are allistic, I hope this story helps illustrate how difficult it is to be an autistic woman living in a neurotypical world. 💙 The saying, "Everyone's Irish on Saint Patrick's Day!" is something I've never understood. 🍀 Like many American households, every year on March 17th, my family has corned beef & cabbage for dinner. A dish my mom has forced me to eat on this particular day ever since I was a little girl that I can barely manage to stomach. Corned beef is pretty terrible itself, but the cabbage is even worse because I can't eat it without feeling sick. Autistic people tend to be finicky eaters, often being overly sensitive to the textures & the flavors of the food they eat. This has been an uphill battle that I have been fighting my whole life. I had a disagreement with my mom about my feelings regarding corned beef & cabbage last year. "Why do we have to eat corned beef & cabbage on Saint Patrick's Day if we're NOT Irish?" I said to her. "But, we ARE Irish because everyone is Irish on Saint Patrick's Day!" my mom exclaimed. "If everyone is Irish on Saint Patrick's Day, then how come everyone isn't Asian on the Lunar New Year?" I asked, truly curious. I love the Lunar New Year because it means eating delicious dumplings & noodles, celebrating my Chinese heritage, & dressing my dog up in a fancy silk Chinese jacket. "Because being Asian isn't fun. If you're not Irish on Saint Patrick's Day, you're not American." my mom said to me. I knew my mom was right because most people don't think being Asian is fun. We're discriminated against, too. "Well, then I guess I'm not American," I said glumly. I was hurt by this because I've always been proud to be an American. But, how does being American require me to be Irish on Saint Patrick's Day if I'm not Irish? I'm autistic, which means I am literal & I just don't understand how someone can be Irish on one particular day of the year if (s)he isn't actually Irish. 🤷🏻♀️ When you think of Saint Patrick's Day, you probably think of glittered shamrocks 🍀, green beer 🍻, green rivers, leprechauns, &, of course, corned beef & cabbage. Well, what if I told you that if you were actually in Ireland on Saint Patrick's Day 🇮🇪, you wouldn't see ANY of those things, except for maybe the glittered shamrocks? Yes, this is absolutely true. To begin, leprechauns are not cute, jolly, friendly cereal box characters that we all imagine that they are. But, they are mischievous, nasty little fellows that Irish people do not want partaking in their Saint Patrick's Day festivities. And just as much as the Irish would not pollute their beer or their rivers with green dye, they would not eat corned beef & cabbage, especially on Saint Patrick’s Day.
The History Of Corned Beef & Cabbage: In Ireland 🇮🇪, cows 🐮 have always been a symbol of wealth & were considered a sacred animal. In fact, from early on in Irish history, cattle were not used for their meat, but they were used for milk & dairy production & farming. Because they were so sacred & expensive, cows were only killed for their meat if they were too old to work or to produce milk. So, beef is not part of the diet for the majority of the Irish population & is typically only enjoyed by the very wealthy during a celebration or festival. In both historic & in modern Ireland, pigs are the most prevalent animal bred only to be eaten, so pork is the most eaten meat in Ireland. When the Irish immigrated to the United States, they often faced discrimination & lived in slums with the Jews & the Italians. In contrast to in Ireland, beef was inexpensive in the United States. When the Irish immigrants first tasted corned beef at Jewish delis, they noticed its similarity to Irish bacon. They paired it with cabbage for its cost efficiency. So, eating corned beef & cabbage is NOT an Irish tradition. It is an Irish immigrant tradition that was created right here, in America when Irish immigrants substituted beef for pork & cabbage for potatoes because of its affordability. Some Fun Saint Patrick's Day Facts:
Side Note: Until I sat down to write this blog post, I didn't know any of the above facts with the exception of the corned beef & cabbage one. For YEARS, I have tried to convince my mom to forgo the dreadful corned beef & cabbage meal because it isn't actually an Irish tradition, but sadly, it has never worked. 🤷🏻♀️ So, whether you're Irish on Saint Patrick's Day or you're Irish the whole year through, Happy Saint Patrick's Day! And if you're NOT Irish on Saint Patrick's Day or on any other day of the year, I feel your pain. 💚 Since Valentine's Day was earlier this week, I wanted to write about love, experiencing it, expressing it, & how it looks differently for autistic people than it looks for allistic, or non-autistic people. But, before we begin... What IS Love? Love is a complex mix of emotions that is everyone in the world experiences, whether they are neurodivergent or neurotypical, autistic or allistic, disabled or non-disabled, etc. It is associated with certain behaviors & strong feelings of affection, protectiveness, warmth, & respect for other people (e.g. family, friends, romantic partners, etc.), animals, principles, interests, hobbies, &/or religious beliefs. How Autistic People Experience Love: Widespread stereotypes suggest that autistic people are incapable of feeling love, romantic or otherwise. However, the reality is that autistic people experience love quite intensely (often much more intensely than allistic people). Interestingly, brain scans of autistic people show that when we express feeling love & affection for someone, different areas of the brain are activated than for allistic people. The empathy circuitry of the brain is also working differently. We, autistic people, are typically extremely attached to our close relationships, often more so than allistic people are. This is because we usually have significantly less people that we are close to than allistic people do. Like allistic people, we have a deep desire for those types of relationships, making the close relationships we do have so much more important to us. With this being said, it is important to remember that autism is a spectrum. So, autistic people experience & express love in unique ways that can vary quite drastically from each other. Our experiences & expressions of love are greatly influenced by our individual strengths, challenges, & sensory sensitivities. How Autistic People Express Love: While autistic people feel love & empathy very intensely, often much more intensely than you do, it may be very difficult or impossible for us to express our love & empathy for you in ways that make you feel loved & cared about. Some ways that we express our love include:
Many autistic people experience what is called "limerence." This is when the person we are romantically interested in becomes a special interest. We fixate on every aspect of their being, want to learn about all of their favorite things, or start to picture the rest of our lives with them after just a few (maybe even one) interaction(s). This can sometimes lead to a devastating end when the effort isn't reciprocated or worse, we can't see that it isn't being reciprocated. Tips For Loving An Autistic Person:
Benefits Of Loving An Autistic Person:
A Few Other Things To Remember:
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. 💙 Last night, my college bestie & I went to a comedy show at a Worcester brewery. I didn't know it beforehand, but two out three of the standup comedians were autistic. The first comedian told us that she is autistic by sharing that both her & her fiancé (who performed right after her) have a touch of the 'tism. Now, this is a phrase that many autistic people use that I just cannot stand. Since this phrase came up during the comedy show that I just attended, I thought that now would be a good time to talk about what this phrase means & why it bothers me so much. What Exactly Does "A Touch Of The 'Tism" Mean?: "A touch of the 'tism" is a slang phrase used to characterize individuals displaying autistic traits. Many autistic people use this phrase when:
While this phrase may also be used by allistic, or non-autistic people to describe others who are displaying autistic traits, this is generally less common. People may say that someone has "a touch of the 'tism" regardless of whether or not (s)he is actually autistic. Why "A Touch Of The 'Tism" Bothers Me:
This is why I am so bothered by the phrase:
While a couple things that were said last night did bother me, nights out with my bestie (last night included) are seriously THE BEST. She's one of the very few people that I can say knows about all of me & loves me for it. 💙 During a recent family birthday dinner, my mom's cousin's husband made a comment about the fact that I probably didn't cry much as a baby or as a young child. The truth is, though, that that couldn't be further from the truth. In fact, as my dad told him, I was a very colicky baby with quite a loud cry for the first three months of my life. I remember family friends, neighbors, & some family making similar comments to both my parents & me ever since I was a little girl. We could always see their point because on the outside, I was a quiet, well-behaved, polite little girl who was comfortable interacting with adults. No, I didn't know how to start or keep a conversation going, but as long as I was talking to someone who could do that for me, that wasn't a problem. This is also often the reason why autistic girls who are now in their twenties & older are often not diagnosed until adulthood, if they are diagnosed at all. Little autistic girls often acted just like how I did growing up. They tended to be quiet, not cause trouble, did as they were told, & interacted well with adults. They were what my parents' friends would call a dream child. On the other hand, little autistic boys tended to be loud, troublemakers, disruptive, & had difficulty listening. Because of this, the parents & the teachers of these boys saw their behavior as problematic, which pushed them to get them evaluated for & diagnosed with autism spectrum disorder. The Girl Wearing The Mask: I have been told countless times by my parents' friends, particularly by the ones who have sons & no daughters, that they wished that they had a daughter just like me. I mean, I was the perfect child after all. A quiet girl who never caused any trouble. What else could a parent want? Growing up in a neighborhood full of boys, I remember sitting on my next-door neighbor's front steps, helping her pull dead flowers out of her large flowerpot while she braided my hair. I had the hair she so badly wanted to play with before her daughter was born. 😜 Given that picture I just painted for you, from the outside, I looked like I was any parent's dream child, so it was abundantly clear to me why my family's family & friends would think that raising a girl like me was easy. When comments like that were made to me, I just smiled & nodded my head, thinking to myself that they don't know what my home & school life was really like. The struggles I went through day in & day out. The worry I caused my parents. The struggles & worry that now make so much sense with an autism diagnosis. The Girl Behind The Mask:
Home Life: I experienced very intense dizzy spells when I was an infant & again from when I was six until I was seventeen. A big part of my & my family's life when I was growing up was revolved around preventing me from experiencing dizziness, or at least preventing dizzy spells from coming on when I was outside of our home. I remember the traumatic details of it so vividly that it's as if it is happening right now. I would be lying in bed & I would feel like the entire world was going round & round. The world felt like it was spinning so fast all around me, frightening me more than I've ever been frightened before. I remember screaming & crying at the top of my lungs & gripping my dad's hands for dear life. Nothing my parents could do or say would help. Nothing helped other than a full night's sleep. I was always told to try to go to sleep when this happened, but I never could unless it was actually bedtime. Yes, it was just as bad as I'm making it seem. If you would like to read more about my experiences with dizzy spells & my very intense fear of being dizzy, I go into even more detail about this in my previous blog posts about the coronavirus pandemic, about vestibular processing, & about vestibular overload. While I'm still very prone to dizziness to this day, it is such a relief that it no longer affects me like it once did. Due to this trauma I faced when I was growing up, feeling dizzy continues to be one of my top fears. So, I still live my life in a way where I do everything I can to prevent feeling even slightly dizzy. I know what my triggers are, I am very aware of my body & how certain things make me feel, & I have coping mechanisms to help the feeling of dizziness be more manageable. This is one of the reasons why when I drink alcoholic beverages, as soon as I start feeling like there is alcohol inside of my body, I stop drinking. The happy & relaxed feeling that you get when you drink is quite frightening for me & is something I want to do everything in my power to avoid. School Life: Academically: I couldn't learn like other students my age could & my very observant fourth grade teacher picked up on it, suggesting to my parents that they get me evaluated for learning disabilities. When I was ten, I was diagnosed with a nonverbal learning disability & processing speed difficulties. I now know that this was a misdiagnosis because many of the symptoms of nonverbal learning disabilities are the same as the traits an autistic child might have. Girls of my ability level were just not being diagnosed with autism back then. When I was in fifth grade, my parents took me into Boston to have further learning disability testing done. The results showed pretty severe deficits, which ended up being caused by a medication my neurologist prescribed me for my dizzy spells (discussed above ↑), which doctors believed was either a migraine or a seizure variant. My parents were super upset because this testing was very expensive & was not at all helpful. Unfortunately, this particular medication had no impact on the frequency or on the severity of my dizzy spells either. Socially: Because I wasn't well-liked by my peers, I was bullied pretty severely from the time I was in first grade until I was a college senior. This is a commonality among us autistics. Every autistic child & every autistic adult you talk to will likely have something to say about bullying. Knowing that I have always caused my parents extra worry, I tried to minimize the pain that I was experiencing in front of them. I think this is a lot of the reason why the effects of the bullying still have a profound effect on me to this day. Even at that young age, I was trying to be the best daughter I could be. 💙 Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
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:
I had a very interesting conversation with my dad about why I've never been successful in the workplace that I'd like to tell you about. I had been sitting at the coffee table, filling out paperwork about my disabilities all afternoon & the last question stumped me: Use this space to write any additional information about why you cannot work. I had put SO much information on all of the other pages of that form explaining why I cannot work that I simply felt like I didn't have anything else to add unless I repeated myself. So, I asked my dad, "Why do you think I cannot work? I want to see if you have any other ideas that I haven't thought of already." My dad has a better understanding of me than most people do because we're so similar to each other. He took a moment to think & then said, "My impression of it is that it's because you can't handle criticism. And because of that, you work ineffectively, which then causes you to get fired." I had never thought of it that way before, but what my dad said was absolutely true. I can't handle criticism. Before we go any further though, I'd like to clarify something. It isn't that I CAN'T work because truthfully, depending on the specifics of the particular job, I CAN work. What I can't do is work for someone else, in the traditional sense. If it's a job where someone is supervising me, that's the problem. Interactions with supervisors are the biggest issue for me in the workplace. While I had never thought of it like how my dad summed it up before, supervisors criticize, whether they're doing it now or they're going to do it in the future. That's what makes me shutdown around them. Interacting with someone who is either actively criticizing me or will criticize me at some point in time causes my brain to completely shutdown. This makes it impossible for me to function, as terrible as that sounds. Total comfort & feeling like I'm not going to be criticized or judged is key in order for me to not shut down. Shutting down at work just doesn't work, supervisors don't know how to interact with me in a way that doesn't cause me to shutdown, & that's why I can't work. This blog post is about what you need to know before criticizing an autistic person, although chances are, if you're reading this, you have already done it at some point in your life. I'm gonna throw in some info about how it feels to be criticized as an autistic woman, too. Why We're So Sensitive To Criticism: Bad Experiences With Criticism: Bullying & being left out are forms of criticism. Every autistic person you talk to will have something to tell you about experiences with those two things. The teasing, the mocking, the name-calling, the fact that no one wanted to be our friend, & MORE. Both bullying & leaving us out does real harm that affects us, autistic adults, many years later. It still affects me today more than I would like to admit. The bullying I endured when I was seven all the way through my early twenties did real harm & it still haunts me to this day. As a fresh college graduate & as an adult, I was constantly criticized by my parents, as well as by other caring family members. I personally believe that Asian & Jewish families expect more from their children than all other ethnicities do. Think about the number of Asian & Jewish doctors & scientists that are out there! Because I have a Chinese mother & a Jewish father, my parents unknowingly set unrealistic expectations for me from a very young age. Once my college graduation was upon me, I quickly discovered that I couldn't live up to those expectations, but I didn't understand why. Being constantly asked if I was happy with my life (I wasn't & I'm still not) & if I worry about what will happen to me when my parents die (I did & I still do) hurt immensely. Not only that, I had no explanation & no understanding of why I couldn't get to the place I needed to be in order to meet their expectations. Living almost thirty-two years of my life feeling like I was a disappointment to my family was extraordinarily difficult. It was even more difficult that I wasn't only disappointing my family, but I was also disappointing myself because I had the same expectations of myself that my parents had of me. I certainly don't blame my parents for any of this because I know that if they had known that I was autistic all this time, those expectations wouldn't have been put on me like they were. However, feeling like I was always falling short & I was never good enough put such a damaging amount of pressure on me for so long that it still affects me to this day to the point where sometimes I forget that their expectations of me have changed since my autism diagnosis. The Criticism Is Constant: I remember being constantly criticized for my behavior ever since I was a young child. Many other autistics have had the same experiences as I have had with this. "Look at me while I'm talking!" "Why do you have that grimace on your face?" "Why are you smiling? That's not funny!" "You shouldn't have said that. You should've said this." "Your face looks funny. Are you okay?" All of the above things have been said to me numerous times throughout my life. Unfortunately, an autism diagnosis hasn't stopped these types of criticisms from happening. My behavior & every move I make have been criticized so much that I simply can't handle any more of it. We're Stressed:
Us autistic people live very high-stress lives. Things that seem so minuscule to you really stress us out. We're sensitive to a lot of things like light, noise, our physical environment, & emotions. For example, I remember a time where my mom insisted that I attend a neighborhood Christmas party. I really didn't want to go because I was expecting to watch Christmas movies in my pajamas that night & now I had to be dressed & socialize with other people. I wouldn't have had such a problem with this party if it wasn't for the fact that it came on suddenly & I had no time to mentally prepare for the fact that I had to attend this party that night. I was in college at the time, so I was definitely old enough to stay home. It just wasn't okay with my mom. The sudden change in plans caused me stress & displeasure & when I expressed that to my parents, I was criticized for how antisocial I was being. This resulted in a complete meltdown. I felt like no one cared about me that night because no one stopped to listen to my thoughts or feelings. When I eventually made it to the party, I ended up standing like a statue against a wall for the few hours we were there because the criticism I received just prior to arriving at the party made it so that I didn't have the emotional capacity to socialize with anyone. We Have Low Self-Esteem: Many autistic people, myself included, suffer from low self-esteem. This is often the result of external factors, like bullying & being left out when we were younger (discussed in more detail above↑). When we have low perceptions of ourselves, it makes us more sensitive to criticism. Low self-esteem also makes us unable to understand or interpret criticism. Even when criticism is communicated with the best of intentions, ALL criticism can make us extremely anxious, which has long-lasting effects on us, crushing our self-esteem even more. Every single time I'm criticized, I feel like I can't do anything right. In fact, I feel like that regardless of whether or not I'm criticized. I know that this is because of how much I have been criticized during the course of my life. Many other autistic people feel this way, too. Our Feelings Are Often Dismissed: I have gone through my entire life feeling like my feelings don't matter. I have always felt like when I speak up, my thoughts & feelings are brushed to the side. I've been talked over & ignored more times than I can count. This not only makes us extra sensitive to criticism, but it makes us think we're being criticized when we're not being criticized at all. What Is Rejection Sensitive Dysphoria?: Although not a clinical diagnosis, rejection sensitive dysphoria, or RSD, is when perceived rejection or failure causes so much intense emotional pain that it becomes very difficult for a person to cope with his or her feelings. Autism & RSD: Many autistic people struggle with RSD & I certainly believe I am one of them. However, this isn't an issue for every autistic person. Increased rejection & punishment for not meeting neurotypical standards puts autistic people at higher risk for experiencing RSD. Also, since autistic people often have different sensory & perceptual experiences than allistic, or non-autistic people, they often experience more intense emotions. Autistic people with strong emotional sensitivity tend to experience social & interpersonal rejection stronger than allistic people, which can increase rejection sensitivity. Complications Of RSD For Autistic People: While most people do not enjoy being rejected or criticized (I mean, who would?), RSD goes beyond simply disliking rejection. RSD is so intensely emotional & can even be physically painful. The desire to avoid this unbearable pain & discomfort often leads to increased masking behaviors, which puts the autistic person at higher risk for burnout. Additionally, RSD can trigger mental health issues in autistic people including anxiety, depression, & eating disorders. So, before you criticize an autistic person, remember that while no one likes to be criticized, criticism is often much, MUCH harder for us to take than it is for the allistic population to take. And if your criticism causes us to shut down or to act unconventionally, please treat us with love, care, & understanding. It's what we need most of all. 💙 I love taking care of my grandpa, who I call Gung-Gung. I really, really love it. I wouldn't trade this precious time I'm getting with him for the world. But, caregiving is HARD work & it's even HARDER work for an autistic person, like myself. Let me tell you why. My Gung-Gung has to get a blood test once a month & it's my responsibility to take him. It's an important responsibility, but it also gives me precious time with him. I love that one Thursday a month. This past Thursday was Blood Test Thursday. Going With The Flow: When I arrived at my Gung-Gung's apartment complex last week, I was surprised to find that the visitor parking had completely disappeared. Autistic people, like myself, like to be prepared & don't like surprises, like this one. Not that anyone would like a surprise like this. It's just more of a problem for autistic people. My mom had recently told me that a notice went out that they were reducing the visitor parking & there were now only going to be three visitor parking spaces. (There used to be roughly double that.) But, signs that read Resident Parking Only were posted in equal intervals, in front of the old visitor parking spaces. That included one of the spaces that was supposedly still a visitor parking space. So, I opted to park on the street. I really don't like doing that, since it takes longer to get inside the building. Plus, getting the car to bring to my Gung-Gung who's waiting for me when I need to drive him somewhere takes longer. I don't want him to yell at me for taking too long, which does happen sometimes. When I asked my mom about the parking situation later on that night, she didn't know what I was talking about & said that that sign wasn't there yesterday. 🤷🏻♀️ Also, walking into my Gung-Gung's apartment, whether I'm there for scheduled caregiving duties or I'm there for a surprise visit, gives me heightened anxiety. I never know what I'm going to be walking into. This gives my mom, an allistic, or a non-autistic person anxiety, as well. But, for me, my anxiety about this is on a whole other level. Autistic people need to know what to expect; they don't like surprises. I personally feel like I need time to prepare for whatever situation is about to happen, but not knowing what I'm walking into doesn't allow me to do that. The following questions usually run through my head:
Anyways, we took the elevator downstairs, I ran to get the car as quickly as I could, & off to the blood test we went. The medical building we go for the blood test is right next door to my Gung-Gung's apartment complex, but due to his age & his physical abilities, it is still too far for him to walk. So, I drive. Putting Someone Else's Needs & Wants Ahead Of My Own: I had this idea in my head that I wanted my Gung-Gung to sit outside with me after his blood test. It was an absolutely gorgeous day & now that we are sadly into the month of September, these perfect days are getting to be more limited. I am someone who needs a lot of sunshine in order to function, so I take a vitamin D3 prescription year round. Plus, I shine a happy light on my face for about ten minutes before getting out of bed in the morning during the late-summer through the mid-spring months. Like many people living in this part of the country, I believe I struggle with seasonal affective disorder, although it’s never been diagnosed. Anyways, once my Gung-Gung's blood test was over, I told him that it was a beautiful day & asked him if he wanted to sit with me by the gazebo across the street before going back to his apartment. It's good for him to get fresh air, something he can’t do without accompaniment. It's much easier to convince him to sit outside if he's already outside rather than if he's inside his apartment. Plus, I was giving up time that I would normally be spending out on the back deck in the sun to take care of him. Much to my disappointment, especially since I knew it would likely be much colder when it is time for his October blood test, he didn't want to go to the gazebo. He told me he just wanted to go back to his apartment afterwards. Knowing that he would make a scene if I tried to convince him otherwise, I knew I had to take a step back & let him take the wheel. This is something that's difficult for anyone in the caregiver position, but it is even more difficult for an autistic person. However, he obviously changed his mind between the time we had this conversation & the time we left the medical building. When we left the building, he started heading straight for the gazebo even though I told him I would drive him there. We sat on a park bench in the gazebo park for a short while, side by side, him tapping his hand on my leg to a beat & me with my arm around his shoulders. This right here was my old Gung-Gung. This was what we did together ever since I was a young child, way before he had his devastating stroke. Although, I only started putting my arm around him when I got big enough to do that. 😉 These glimpses of my old Gung-Gung overwhelm me with so much warmth & happiness that it is hard for me to properly convey how I feel. I've always felt so safe, secure, protected, loved, & cared about when his arms were around me. While I still feel some of those same things today, despite him being disabled & me being all grown up, I feel so blessed to now be doing the same thing to him. Giving him the safety, the security, the protection, the love, & the care that he always gave me while also doing something that is good for him. Getting him some fresh air & sunshine. On another note, I wrote more about how being an autistic caregiver affects me in blog posts entitled My Experiences Being A Caregiver With Undiagnosed Autism & Strengths & Weaknesses Of Caregiving With Autism, if you'd like to read those prior blog posts. The Grief We Deal With:
When my Gung-Gung decided that it was time for us to go inside, we went in a nearby door & up the elevator to get to the enclosed bridge that leads to the building that he lives in. This walk is a little far for my Gung-Gung & his favorite sitting spot is on this bridge. So, this is where he likes to take a walking break. You get a perfect view of the nursing home associated with his apartment complex from this bridge. This nursing home was where my grandma, who I called Haw-Bu, passed away. So, he feels a closeness to her when he sits there & looks at the nursing home. He & I sat in two chairs by a window with a view of the nursing home & almost immediately, he was gesturing & asking why did she have to die before him. Why did she have to leave him here on Earth? He then bursted into tears & was sobbing for the love of his life of over sixty years. It's probably been over a year since I've seen him cry like this for his wife. I came around behind the chair he was sitting in & wrapped my arms around him in a loving & a comforting embrace until he was able to collect himself. Once he let me know he was okay, I sat back down in my chair again & wrote in big letters on my whiteboard Kim♥ Gung-Gung. When I showed it to him, he smiled at me with love in his eyes. I mostly communicate with him through simple, written language now, along with some gesturing. Because his stroke caused him to acquire a condition known as global aphasia, he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language, with the exception of simple phrases written on a whiteboard. It is easier for him to understand third-person language rather than first-person language. So, this was why I chose to use my first name rather than a pronoun when talking about myself. Is There Something Wrong With Me?: In times like this, I wonder if there is something wrong with me. When my Haw-Bu passed away, I never grieved. I never even shed a single tear. In fact, all of the sadness I experienced after her passing was caused by my Gung-Gung's sadness & grief. If it wasn't for him, I wouldn't have experienced any sadness at all. How is it possible that she was my grandma & I don't miss her? There have even been times where I have wondered what it was about my Haw-Bu that my Gung-Gung was attracted to. What did he love about her? Don't get me wrong, I'm so glad for their absolutely incredible love story, for without their love story, I wouldn't exist. But, I could never relate to my Haw-Bu & many of the interactions I had with her were beyond frustrating, leaving me feeling flustered & misunderstood. I spoke at my Haw-Bu's celebration of life that my family held after her passing, but I had a lot of trouble writing the words I was going to say to my family & to my grandparents' friends. Much of the reason I spoke had to do with the fact that my brother & my cousins were speaking, so I felt like I needed to speak also. I was my Haw-Bu's oldest grandchild, as well as her only granddaughter, after all. But, how do you speak about someone who you were supposed to have had a relationship with, but didn't? I feel so guilty that I feel this way. In the end, though, my speech did make it sound like my Haw-Bu & I had a very close relationship. Many of her friends came up to me afterwards & made comments about how great it was that I had such a close relationship with my Haw-Bu. I felt like I had just lied to almost everyone in that room though, which was crushing. One thing that differentiated my celebration of life speech from the speeches of my Haw-Bu's daughters & grandsons was my speech didn't mention cooking or food. At all. My Haw-Bu loved cooking & the way she showed love was by feeding you. Food wasn't my love language. In fact, the amount of time she spent in the kitchen & the fact that she was always trying to feed me was quite annoying. This was particularly frustrating because most of the time she tried to feed me, I didn't feel like eating & forcing myself to eat to make her happy was terribly painful. I eat food because I need to in order to continue to be alive. I don't eat food because I enjoy eating it, especially because I almost never have a good appetite. I know that this isn't how most people think about food. I've always felt that if my Haw-Bu had spent a lot less time in the kitchen during visits, I would've been able to have a relationship with her. For one of my brother's birthdays when he was younger, he asked our Haw-Bu to cook him & some of his friends a Chinese feast. I wouldn't have ever dreamed of doing such a thing because I always wished she would spend quality time with me, outside of the kitchen. I wanted this from the time I was young child until she passed away & I never got it. I wrote more about how grief affects me & other autistic people in my prior blog post entitled Autism & Grief, if you'd like to read that prior blog post. Conclusion: All in all, this past Thursday was a good day. Everything went almost perfectly. I was impressed by the number of people who walked past my Gung-Gung & me sitting on the bridge who said hello to him using his name. That meant all of those people know his name even though his language abilities are very limited. (I usually spend most of my time inside my Gung-Gung's apartment when I visit.) One of the things that made my Haw-Bu hesitant about moving here was that no one here would've known my Gung-Gung before he had his stroke. But, in a building like this, he's getting much more social interaction than he ever got in his stand alone house in California. In fact, I even explained that Gung-Gung means maternal grandfather in Chinese to one of my Gung-Gung's friends who walked by. This particular friend saw the whiteboard that was lying in my lap that read Kim♥ Gung-Gung & asked me what a Gung-Gung was. And This Is The Story: The Week Of August 28th: One morning, my mom was coming home from walking one of our dogs when she heard scuttling coming from underneath the hood of my car. Thinking there must be an animal in there, she asked my dad to investigate. When my dad opened the hood of my car, there was a chipmunk inside. He yelled at it & scared it away. 🐿️ Sunday, September 3rd: My brother, who was home last weekend for my birthday, was waiting to take a walk with my mom & one of our dogs when he heard scuttling coming from underneath the hood of my car. Knowing that there was a chipmunk in there just a few days prior, he told our mom about it. She gave him my car keys & asked him to get rid of it. When he opened up the hood, there were at least four chipmunks in there. This time, the chipmunks were staring at him, seemingly unafraid & unwilling to move. My brother, afraid of the chipmunks, grabbed a broomstick from the garage to try to get them to leave. They scurried out. My dad also put some mothballs inside a little KFC takeout container which he put inside there to deter chipmunks from making the hood of my car their home in the future. 🐿️ 🐿️ 🐿️ 🐿️ Tuesday, September 5th: A couple days later, I was driving to & from my dog walking clients' houses & thought to myself, "There is a really strange smell in the car." Not confident enough in my ability to recognize the unpleasant smell of mothballs, that night, I asked my dad if the smell of the mothballs he put in the hood of the car could possibly effect the smell of the interior of the car. He replied that that is certainly a possibility & one that he thought of, too. Wednesday, September 6th: The next day, my dad told me that he investigated the smell inside my car & it's definitely not mothballs. He smelt the hood of the car & it doesn't smell. The interior of the car did smell though, so he asked me if I spilt anything inside the car, even if it was water. I told him that I definitely didn't spill anything in the car. The only thing I ever regularly consume in the car is water & it's always in a very tightly sealed water bottle that I'm sure didn't spill. I said to him, "I wonder if Mom drove the car & spilt something in it without telling us." That was the only thing I could think of because I know my mom has a tendency to spill things in cars. Then, I went on to say that it was a very strange coincidence that a couple of days after we found chipmunks in the hood of my car, the interior of the car smells. My dad agreed. I was pretty certain that the smell had to do with chipmunks & not with a spill. Friday, September 8th:
It was a super hot & humid day & I was driving to & from my dog clients' houses again. Between walking my own dog & walking my clients' dogs, I was super hot & sweaty. So, I put the car's air conditioner on maximum strength. I then started to notice the unpleasant smell in my car getting significantly worse. A thought went through my head: What if that smell isn't mothballs & there's actually a dead chipmunk lying next to the vents in the hood of my car?! NO, NO, NO! That better not be the case! That better not be! Well, I totally forgot to mention this to my dad by the time I got home. The reason why? The largest rainstorm I've ever driven in happened that afternoon on my drive home. Super stressful drive. It came on so suddenly & without any warning. One moment it was cloudy & the next, it was like I was driving through the middle of a hurricane. There was so much rain that I thought the water was gonna swallow up my car with me inside of it. I could barely see & I didn't think it was safe to pull over either because I didn't think anyone would see me if I did. Saturday, September 9th: The next morning, when I was about to take my dog for his walk, I noticed that the hood of my car was open. So, I asked my dad if he was still investigating the smell. Not surprisingly, he pointed to the backside of my vents & said, "There's a dead chipmunk in there, but I can't see it. I tried looking with the flashlight on my phone & can't see it, but I know it's in there." I KNEW IT. I asked him what we're gonna do about it. Do I have to drive around with a dead chipmunk inside the hood of my car for the rest of the time I drive that car? And most importantly, how are we gonna get the smell to go away? His response? We're not gonna do anything about it because if we can't see it, we can't get rid of it. It will stop smelling. Eventually. The most surprising thing he said though? The chipmunk was probably sick & dying & went in there because it was a nice, quiet place for it to die alone. Yeah, right. 🤦🏻♀️ When I told my mom about my chipmunk situation, she Googled what to do about a dead chipmunk inside the hood of your car. I mean, what else should the queen of Google do? An article she came across said that it can take many months for the smell to go away on its own & it suggested purchasing something called a dead mouse deodorizer. We purchased that from Amazon. 🐿️ Sunday, September 10th: The next afternoon, I had to drive to the next town over to meet my new cat sitting client. I had just barely left home when the world's most horrible smell came over me. I had walked my dog just before this, so yes, the A/C was on. And due to the humidity, it was on maximum. I quickly opened both back windows & put them as far down as possible. I seriously thought I was gonna vomit. The smell was a gazillion times worse than it had ever been before. I was so glad it hadn't started raining yet or I don't know what I would've done. I probably would've died. Or come close to it. By the way, my dad's story changed. Now, he told me that my brother only saw three out of the four chipmunks scurry away last weekend. One of them disappeared. That makes a lot more sense. A chipmunk did not in fact choose its dying place to be behind the vents inside the hood of my car. So, that means one of two things likely happened:
Sensory Sensitivities: Now, let me take a moment to tell you about the open windows in my car, as I mentioned above ↑. I can't tolerate open windows in a car, in a bus, in a ferry, in anything that is moving pretty much. Blowing air, breezes, wind, etc. They all bother me SO much. Convertibles, open air jeeps, etc.? Forget it! That's why I opened my back windows & not my front windows. You know when kids are little & they sit in front of a fan, going, "Ahhhhhhhhhh..." because they love how the fan changes the sound of their voices? I never did that because that would require me to sit in front of a fan. Sitting in front of a fan meant air blowing in my face. Nope, nope, & nooooope! I even had trouble in college with fans. The dorms when I was an underclassman were not air conditioned, so we depended on fans to keep the room cool in the warmer months. That was a problem for someone like me who is intolerant of fans. Also, I have all the vents in my car turned away from the driver's seat so that no air will blow on me while I'm driving. During times where I'm really hot, I have turned them back towards me briefly, just until I cool down before turning them away again. In fact, one time when my dad drove my car, he wondered why he was so hot & then he realized that the reason why was because all of the vents were turned away from the driver's seat! 💨 Monday, September 11th: Last night, a very close friend of mine took me out to dinner for my birthday. Just what I needed. I texted her the evening before to ask her if she could pick me up. I had no clients yesterday, so if I didn't have to drive to dinner, I wouldn't have to drive at all that day. Breathing in that horrible, vomit-inducing stench right before sitting down to dinner? I'd rather not. I mean, there's no good time for that, but right before a meal is an especially bad time for that. Tuesday, September 12th: I had three clients I needed to drive to today & I could barely smell the stench in my car. Could the stench have not been there at all & I'm just imagining it? Quite possibly. I'm still not convinced that this is the end though. There were days that the smell wasn't as bad & then it got bad again. I guess we'll just have to wait & see. Many autistic people have sensitivities to smell. Luckily, I am not one of them. But, being that I am so sensitive to blowing air, my sensory sensitivities did play a factor into how I am surviving this chipmunk situation. And that, everyone, is my story about autism & chipmunks. 🐿️ 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. 💙 During a phone conversation with a close family member this morning, I was asked about how my life is different now that my personality has been diagnosed. I was deeply hurt that I was asked this question. But, at the same time, I felt blessed. Out of everyone I have shared this diagnosis with, there has only been one person who has given me inappropriate reactions. From what I know about people who have come out as autistic, the more common response is for the majority of people to act like it's no big deal when they originally are told this information & then they proceed to treat you differently &/or shut you out of their life completely. "How Is Your Life Different Now That Your Personality Has Been Diagnosed?": My response was that my personality was not diagnosed because autism isn't my personality. It isn't anyone's personality because autism isn't a personality. I was then asked, "Well, if it's not your personality, then what is it?" "It's a disorder or a disability," I responded. I know many autistic individuals are going to disagree with my choice of words here. Depending on his or her own experiences, many people in the autism community believe that this is not true. Some people dislike that ASD stands for autism spectrum disorder because they don't think it's a disorder. Disorders imply that something is wrong, something needs to be corrected, &/or a cure is needed. Many autistic individuals don't believe that anything is wrong or that anything needs to be corrected, so there's nothing that needs to be fixed. I talk about this more in my blog post entitled I Desperately Want A Cure For Autism, But Most Autistics Disagree: This Is Why. I think autism is a disability because it has hindered my ability to get to where I want to be in life. What I Think My Life Would've Been Like If I Wasn't Autistic:
What Autism Is & Isn't:
Autism Is:
Autism Isn't:
What Personality Is & Isn't: Personality Is:
Personality Isn't:
I got my hair cut this morning. While I just LOVE the end result of a haircut, I don't like the process of having it done. This Is Why:
Why Many Autistic Individuals HATE Having Their Hair Cut:
My mom & I took one of my dogs to my favorite Block Island beach today. This day was my ideal day. My perfect day. Sitting on the beach on a perfectly sunny, blue-sky day with my mom & my dog. My favorite alcoholic drink was in my hand. I could feel the warmth from the sun on my skin. This is summer. So, we try to get to this beach every year. The only thing that made it less than perfect was the traffic we were stuck in on our way there that made us nervous about missing the ferry. And my dog trying to scare the seagulls away. I mean, I don't like seagulls either (a seagull stole a hot dog right out of my hand many, MANY years ago), but trying to ignore them wasn't a possibility for my little Teddy. Going To The Beach Wasn't Easy When I Was Growing Up:
Walking on sand caused me to get motion sickness to the point where I actually had a lot of anxiety leading up to beach trips. I've always been intensely afraid of feeling dizzy. Still am. And walking on sand caused dizziness. Sometimes, it caused dizziness that was so bad, I couldn't stand up straight or I felt like I might fall over or collapse. The feeling of my feet sinking into the sand was never something I could tolerate. I was a hard surfaces only type of girl. This was a problem for me when I was a young child, but also when I was a teenager. Especially when I was a child, my family tended to go to the beach with other families. Mainly families of my younger brother's friends because sadly, I didn't have friends. Picture trying to keep up with boisterous young boys when you're trying to combat dizziness & everything that comes along with it. Luckily, the feeling subsided fairly quickly once we found our spot to set up on the beach. However, since my mom liked to scope out the BEST spot for us to set up, it sometimes required partially setting up somewhere & then moving to somewhere else, which was SO hard on me. I've always felt like due to my difficulties with motion, dizziness, & other sensory sensitivities, I unintentionally put a damper on my family's fun. Because of this, I'm pretty sure I never vocalized this fear to my parents. It would've caused even more anxiety, fear, & discomfort. I am so glad this is in the past & this is no longer something I need to deal with. I'm the type of person who could never live in the states in the center of this country because they don't have easy ocean access. I love the ocean too much! I went on a date today with a man I believe is autistic. We met on a dating app. He doesn't know that I think he's autistic & I haven't yet told him about my autism either. After matching on the dating app, we spent several weeks messaging back & forth & had a conversation on video chat before meeting in person. Unlike other women my age, I started experimenting with online dating when I was just nineteen years old. I mean,...
Video Chatting With My Date: My video chat with my date was slightly less than two weeks ago. A couple hours before the time we had picked to chat, I was freaking out, confided in my dad about it, & asked him what he thinks I should do. At this point, I was pretty certain this man was autistic. From his occupation to what he spends his free time doing to taking things I say or ask way too literally to admitting that social activities are downright exhausting. It seemed like every new thing I was learning about him was an autistic trait. I can't help but wonder, if I had matched with this man prior to learning that I am autistic myself, would I still have been able to pick up on these things so easily? I have learned SO much about autism over the past year. Anyway, this is the interesting part. I'm trying to word this carefully because I know other autistic people are stumbling their way onto this blog. But, the reason I was freaking out over this video chat was because this is an autistic man. Would he be too autistic for me? Too strange or weird? Yes, I am an autistic woman, but interactions with other autistic individuals actually make me shut down. I've always been this way. Ever since I first learned that I'm autistic, I have been immersing myself into autistic literature & have been reading books, memoirs, & blog posts written by autistic women, mainly women who were diagnosed later in life. Each woman has her own story, but there is one thing that all of these women have in common: they all enjoy spending time with autistic people & most of them have a group of autistic friends. I am the exact opposite of these women. Every autistic trait or quirk I exhibit is something I dislike about myself SO strongly that I don't want my friends or my significant other to exhibit those traits or quirks either. While it gave me comfort to know that getting rejected for my quirks probably wouldn't happen if I dated an autistic guy, this is why it was also so frightening. I really enjoyed messaging back & forth with him for the past week, but now it was time for me to find out: was he too much like me? And if he was, the idea of breaking that to him was really scary. I've been rejected my whole life & I know how much it hurts. So, this is what happened. We video chatted for almost an hour & a half & I still liked him. Not only that, but he reminded me of one of my cousins who is such a nice, sweet guy. If I ended up with someone like my cousin, that would be totally fine with me! Our First Date:
This is the second first date I have been on since learning that I'm autistic. It was to a mini golf & ice cream place, a location that was comfortable for me, since I am still taking COVID precautions & feel uncomfortable being in close contact with someone who I don't know really well. He texted me that he was there when I was just a couple minutes away. When I got there, I saw him sitting on the steps of the ice cream shack. He was wearing a plain tee & corduroy long pants. My first thought was that he must be sweltering because it's in the 90's. Corduroy is something I would only wear in the cooler months. I was wearing a lacy spaghetti strap top & jean shorts, so in my opinion, the two of us looked like we belonged in two very different climates. He got up & shook my hand when he saw me, but I wished he gave me a hug instead. I'm a hugger, not a handshaker. The mini golf portion of the date was great! We chatted as we made our way along the golf course. The woman who we paid for a game of mini golf offered us a score card, which we didn't take because neither of us are competitive. He understood me in ways that no one else did. Mainly things having to do with not having a desire to have social interaction be a part of my life. I guess that's one positive thing about dating another autistic individual. After we finished our game of mini golf, we got some ice cream from the ice cream shack. I got English toffee soft serve. I always get flavored soft serve if I can because so few places offer that. He got an orange soda float. He was gonna stand in the corner, near the window where we picked up our ice cream to eat, but I suggested we get a table & sit down instead. Much more comfortable & way less awkward. Once we sat down, he wouldn't stop talking. Not only that, the conversation was going in a direction that just didn't interest me. He was telling me about courses he took in college & was asking me about mine. I just didn't care to listen or to talk about that & it went on for HOURS. I graduated from college ten years ago & strongly disliked the majority of my experience that I've tried to put it out of my brain. We'll talk more about that on another day though. I felt so far removed from what he was asking me that I just didn't remember the answers to most of his questions. I'm only a year or two older than him, so we were in college at the same time. Other topics of conversation came up in the middle. My dogs for example & the fact that I used to have bunnies before them. But, those topics of conversation were very short-lived & we kept going back to the same unenjoyable conversation topic. After meeting him in person, I was certain he was autistic, but he also reminded me less of my cousin than he did previously. In fact, this date was more than two hours longer than I wanted it to be because I just couldn't figure out a way out or how to get him to stop talking! Do I think he's the right person for me? No, I don't, because if I did, I don't think I would've wanted this date to end so badly. This is one of my experiences dating as an autistic woman. Dating as an autistic individual is very, very difficult &... This Is Why:
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:
This afternoon, I asked a close family member of mine for relationship advice (something I rarely do), which led to a conversation where he made a statement that I just can't stand. A statement he's made multiple times before. A statement I've corrected many, many times. A statement that causes me to cringe more with each time I hear it. And yet, a statement he continues to say. Specifically, the statement he said was, "The more I learn about autism, the more I believe that everyone is on the autism spectrum." Other ways of saying this are "We’re all a little bit autistic" & "All of us are autistic to a degree." If you've been in the autism community for long enough, you've likely heard one of these statements, or a similar statement that suggests that everyone is autistic. So, going off of that, the topic of today's blog post is about what these kinds of statements really mean & why hearing these statements hurts so much. As much as it hurts to hear statements like these, these are common beliefs among allistic, or non-autistic people, so I wanted to take the time to explain where these beliefs come from & what is so wrong about them. However, before we dive in, I want to make one thing clear. If you've ever said something like, "Everyone is on the autism spectrum" before, this post isn't about telling you that you are bad or wrong. I totally understand where the belief comes from & I know that most people who say statements like these are trying to be compassionate towards the autistic person they're talking with. However, this isn't how it comes across to the autistic person. Let's Take A Moment To Explore What The World Would Likely Be Like If Everyone Really Were On The Autism Spectrum:
To really understand why everyone simply cannot be on the autism spectrum, we have to understand what the autism spectrum really is. We already discussed this in my April 3rd blog post entitled What Does It Mean To Be Autistic?, but it never hurts to review what we already know, so...
What Exactly Is The Autism Spectrum?: Autism spectrum disorder is a lifelong neurodevelopmental disability caused by differences in the wiring of the brain that cause difficulties with social communication & interaction. It also causes restricted or repetitive behaviors or interests. The key problem with stating that everyone is on the autism spectrum is the fact that autism spectrum disorder is a neurodevelopmental disability. In order to be autistic, you have to have a certain combination of autistic traits that impacts your daily life on a significant level. A Couple Important Points To Remember:
Hearing That Everyone Is On The Autism Spectrum Hurts So Much Because... It is dismissive & it minimizes our struggles. It also translates to everyone being just like us when we know that couldn't be further from the truth. Also, if everyone were autistic, how could we still be so misunderstood? Whether someone was diagnosed as a child or as an adult, (s)he has gone through a lifetime of feeling different from his or her peers. Telling us that everyone is on the autism spectrum, or any similar statement dismisses these differences & the significant difficulties that come with them. What You Should Do Or Say Instead: Offer a listening ear & a shoulder to cry on. Autistic people, myself included, often feel alone, unheard, & like their perspectives don't matter. They have more than likely had a difficult life beginning in early childhood. Help the autistic person feel less alone by truly listening & by showing him or her that you care. Truly listening & being compassionate are the best things you can do & will likely combat the loneliness that the autistic person is currently experiencing. The past week has been incredibly stressful for me. A little over a week ago, one of my dogs woke up from his night sleep covered in his own urine. This is the first time he has ever done that in his lifetime. He's never even done that when he was a tiny puppy, prior to being fully potty-trained. He's always warm (dogs' body temperatures are warmer than humans' body temperatures), but this particular morning, he felt warmer than warm. I put him in the bath tub while I called his vet & figured out what to do with him. Unfortunately, his vet wasn't able to get us in until 7:20 that evening. I wiped him down, but didn't give him a full bath because he hadn't quite had his flea & tick topical on for long enough before being able to be bathed. Plus, with him needing to go to the vet that evening & me being the germaphobe that I am, I wanted to bathe him after he came home from the vet rather than beforehand. I have to tell you, that day was the longest day ever. My little guy; who will be turning ten in a week; is typically such a lively, happy, energetic little man; but the life was completely sucked out of him. I had never seen him this lethargic & sickly before & that was quite scary & stressful. He didn’t pick up his head if someone walked in or if his name was called. But, it was even more alarming that he didn’t want belly rubs. That boy is the king of belly rubs. Even with the number of dogs I've cared for, I've never met a dog who loves belly rubs more than my sweet Teddy. When it was finally time for Teddy’s vet appointment, my mom & I both took him in. Based on his appearance as well as my observations that I shared with the vet, she thought that due to the area we live in, he probably had a tick-borne illness. He was brought back for a urine test & couple of blood tests (one of which was to check for tick-borne illnesses). Teddy tested positive for two out of the three tick-borne illnesses that he was tested for. Specifically, ehrlichiosis & anaplasmosis. I am super religious about combing my boys & checking them for ticks every single night. Plus, them being all white helps tremendously with being able to easily spot something like a tick on them. Not only that; I apply a flea, tick, & mosquito killer & repellent topical on them twice a month during the warmer months of the year; & I don’t allow them to romp around in tall grass, in wooded areas, & in all other places where ticks are likely to be. I did everything right & I never saw any ticks on him. The first day that I really thought he was almost all better was yesterday (exactly one week since symptoms started), but until I saw major improvements, I was stressed to the max. That would stress anyone out, autistic or not. With that in mind, let’s take a moment to talk about stress, how neurotypical people deal with it, how autistic people deal with it, & how I deal with it. What Is Stress?:
As explained by the World Health Organization: Stress can be defined as a state of worry or mental tension caused by a difficult situation. Stress is a natural human response that prompts us to address challenges and threats in our lives. Not everything that we experience that causes stress is negative. Here are some examples of negative & positive stressors. Negative Stressors:
Positive Stressors:
The Impacts Of Different Intensities Of Stress: Mild Stress: This type of stress typically motivates the individual to work as hard as (s)he can to achieve some type of end goal. Severe Stress: This type of stress is typically debilitating for both the individual & his or her performance. How Stress Affects Autistic People: Because autism tends to reduce the resources a person has to cope with challenges brought on by stress, an autistic person's experience with & their ability to handle various stressors will likely be much different than it would be for an allistic, or a non-autistic person. Autistic Comorbidities: In my blog post about why most autistics don't want a cure for autism, I mentioned the fact that there are a lot of comorbid disorders that tend to accompany autism. Some disorders that autistic people are at higher risk for are mood disorders. In fact, it is estimated that 10 to 50% of autistic people develop depression in their lifetimes & about 5% of autistic people develop bipolar disorder in their lifetimes. In the general population, prevalence rates for depression & bipolar disorder are much lower & are estimated to be up to 7% & less than 1%, respectively. Other mood disorders that autistic people are at a higher risk of developing include, but are not limited to anxiety disorders, post-traumatic stress disorder (PTSD), & obsessive compulsive disorder (OCD). Autistic people who are verbal & who do not have intellectual impairments are at a much higher risk of developing mood disorders than those who are non-verbal &/or are intellectually impaired. Due to the high prevalence of mood disorders in autistic individuals, stress could be highly problematic to cognitive, physiological, & behavioral functioning in the autistic population. Common Stressors For Autistic People:
Common Ways Autistic People React To Stress:
Studies Indicate That Autistic People Have Heightened Responses To Stress:
How Stress Affects Me: I have never been able to handle stress well. Stress tends to cause me to get flustered & prevents me from being able to think clearly or rationally. Depending on the intensity of the stress I am experiencing, it may cause shutdowns, which prevent me from being able to communicate verbally or non-verbally with others. Meltdowns are an extremely rare occurrence with me, but stress has caused meltdowns to happen in the past. My Most Common Stressors:
While some of the above stressors also may stress out allistic people, it is important to remember that I experience stress on a whole different level than what is considered normal. For example, there have been times in the past where I was trying to have conversations with my supervisors, but was unable to form simple coherent sentences due to the panic that resulted from my supervisor simply being in the same room as me. Another good illustration of how stress affects me is I have been told from multiple police officers that they thought I was on drugs during their initial interactions with me. I have never been on drugs in my life, but clearly, police officers stress me out so much that interacting with them causes me to act like I'm under the influence even though I am far from it. There will be a future blog post written about issues surrounding police officers & autism where issues like this will be discussed further. 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. |
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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