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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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:
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. 💚 The words above were the words my grandfather, who I call Gung-Gung, was screaming as he was sitting in the phlebotomy chair earlier this week. Let's back up for a moment, so I can fill you in on what happened. I take my Gung-Gung to his blood test appointment every month. When I brought him in last month & his phlebotomist, Lindsey, told me that she was leaving, my heart sank. Yes, autistic people have difficulty dealing with change & transitions, but this was absolutely NOT why this was so upsetting to me. Lindsey is the main person who has taken my Gung-Gung's blood ever since he moved to Shrewsbury in 2021. But, not only that, she seems to be the only person who is capable of taking his blood. No joke. His veins aren't great, plus his skin is super crepey & wrinkly. She is really, REALLY good at her job, but not only that, she is really, REALLY good to him, too. Without her, what would I do?! Since I'm the one who takes my Gung-Gung for his blood test every month, this was MY problem. The last time Lindsey wasn't there (this past December), my Gung-Gung's blood test was a complete nightmare. This is what happened:
This is what happened when I took my Gung-Gung to his blood test earlier this week:
That day was so incredibly stressful. Caregiving is HARD WORK. Caregiving while you have a significant disability such as autism is even HARDER WORK. Autism impairs our communication abilities, our processing speed, our ability to multitask, & more. All of those skills are needed when you care for someone, especially someone who isn't able to care for him/herself. Later on, when I told my mom what had happened at the blood test, she told me that I was really lucky that I was able to convince the phlebotomist to draw his blood. And she was right. He was screaming, "No!" & I don't have medical say over him. But, we're there every month for the same thing, I know the phlebotomist, I know what he needs, & I know the best way to advocate for him. (In fact, there are times where I feel like I'm better able to advocate for my Gung-Gung than I'm able to advocate for myself.) Those weren't things that were easy for me to learn when my grandparents first moved to Shrewsbury, but I did it. And I'm so glad I did because it's giving me precious moments with my Gung-Gung that I'll have forever. 💙 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:
With today being the Lunar New Year (the year of the dragon!), I just wanted spend this blog post telling you about Asian culture & autism. My mom's side of the family is of Chinese descent & while I definitely have had an American upbringing, Asian culture has had great influence over the way I was raised. In the Asian culture, you are taught from a very young age that all of your personal difficulties are to remain inside of the home. In fact, if you were to be open about your challenges in public, you would likely be thought of as a disgrace. Unfortunately, the majority of Asian Americans still have this mindset to this day. One of the times my mom taught me about this was when she talked to me about hiding the bottles of antidepressants that I was taking before my grandparents arrived for a visit (particularly because of my grandpa's background in pharmacology) in order to prevent questioning & criticism. Moments like these are probably why I have always been more comfortable confiding in my dad than my mom, both as a child & as an adult. I have always felt like the fact that I have had lifelong mental health difficulties, & now autism, is something to be ashamed of because in the Asian culture it is. Another example of this occurred many, many years ago when my grandparents took my mom & my aunt on a tour of China. I remember my mom telling me that everyone wanted to take pictures with a person in their tour group who was using crutches. The reason why? If you're using crutches or a wheelchair in China, you generally don't leave your home. So, that's not something you ever see out on public streets. Asian Americans love to pride themselves in (& even brag about) which colleges & universities they got into & their SAT scores & then later on, how successful their careers are. I remember my grandma telling me about a time in school when she cried (something I have never seen her do EVER) because she got a 98 on a test. I can't picture myself ever crying over a 98. In Asia, when students don't do well on a test, even if it was the entire class that didn't do well, it is never the teacher's fault. It is never because the teacher didn't teach the material well enough or the test was written poorly, for example. It is always because the student didn't study hard enough. When a child has a disability that makes achieving the types of academic & professional successes that Asian people strive for much more difficult, such as autism, it poses a very significant problem for the child & her or his family. Asian Americans don't have any issues asking for help when it comes to furthering their child's academics or career, but when it comes to autism, they tend to refuse help & then the child is left to suffer alone, in silence. When children are diagnosed with autism in China, they are often sent to costly private treatment centers for ABA therapy. However, while this type of therapy is the most common type of therapy for autistic children, it is an extremely traumatic type of conversion "therapy" that essentially teaches autistic children to act in ways that make allistic, or non-autistic people more comfortable. Children who have received this type of therapy often develop post traumatic stress disorder by the time they reach adulthood.
Sadly, autism is still a relatively new condition in the Asian community, with China first recognizing it as a neurological disability as recently as 2006. In fact, many Asians have heard about autistic non-Asians, but they've never encountered an autistic Asian before. This is because less than one percent of autistic Asians have been evaluated for autism, let alone are receiving support for it. The thought that ninety-nine percent of autistic Asians are undiagnosed is quite staggering. Asians are likely not diagnosed with autism because they are afraid of being a disappointment, something I felt that I was until shortly before my thirty-second birthday, when I learned that I was autistic. I'm going to start this blog post off by saying this: this is the most vulnerable blog post I have written thus far. Some things that are in it are things that I've mentioned before & some things aren't. But, everything in this post is as real & as raw as it gets, is one-thousand percent true, & is something that I felt needed to be said. Growing up, & even now, my life was & is a struggle. I was autistic & I didn't know it for almost thirty-two years because I grew up at a time when girls like me were just not diagnosed with autism. I was living in a world that I didn't fit into, but I had no understanding as to why that was until about a year & a half ago. I was so lucky because my parents did everything they could to give me the BEST childhood ever. And I'm so thankful for that. However, there were certain things that no matter how loving & how supportive my parents were, they just couldn't protect me from. Every autistic person you talk to will have something to tell you about how society treats her or him; about the trauma that (s)he endures on a daily basis. The way neurotypical people treat us does real, long-lasting harm. I never understood why people treated me so poorly because I didn't think I did anything wrong. Were they treating me that way because I simply exist? Probably. The bullying I experienced in elementary school through college was INTENSE, & it only worsened the older I got. From being made fun of for being too quiet to having my feet walked on top of on a daily basis to being barked at & growled at like an angry dog to boys trying to trip me in the hall & slapping my butt when I was at my locker. Freshman year in college, they put me into a quad with another Shrewsbury alum who inserted nasty things about me into the brain of another one of my roommates. They ganged up against me & made my life a living hell for the entire year. A couple years later, a different roommate suddenly gave me the silent treatment & I had no idea why, until one of her friends told me. It was because I was uncomfortable with boys sleeping over in our room, something that I thought was perfectly reasonable, especially for a quiet & a timid girl like myself. I was never given the chance to make any sort of compromise because she never told me why she was so mad. Many years later, I found out that this particular roommate now has an autistic child. What a coincidence! Being treated with such cruelty on a daily basis for so many years is extremely traumatic for us. And it often has the same types of consequences on our brains as going to war, witnessing someone get murdered, or having an abusive spouse would. It just takes a much longer amount of time to do the same amount of damage. More than 40% of autistic individuals struggle with post-traumatic stress disorder & although I have never been diagnosed, I do think I am one of them. I think that the effects of having to endure the type of treatment I described above for so many years is why it takes me such a long time to trust someone, even now, as an adult. I also never really voiced the significant amount of pain I was experiencing to my parents because I didn't want to worry them. So, I didn't get as much support as I probably needed while I was going through that. I knew I have caused them A LOT of worry ever since the day I was born & I didn't want to add to it even more. From a very young age, I wanted to do everything I could to be the best daughter I could be, even if it meant unintentionally harming myself. When I first learned from my physician that the cause of all of my lifelong struggles was due to living with undiagnosed autism, I took a couple of months to process it & to learn more about how autism affects girls & women. But, after I did that, I wanted to do more digging into my past to learn more about how autism affected me as a young child & as an adolescent. I knew that when I was in school, my mom kept a very thick manilla envelope full of documents & letters from various medical professionals & educators. Knowing how organized my mom always was, I asked her if she still had that envelope & she did. This envelope ended up being a treasure box into my past, containing a lot of information, some that I never knew about myself, from when I was less than a year old until I was eighteen years old. One of the things that really stuck out to me was meeting notes from my seventh grade language arts teacher, Peggy. Better expression in written vs. verbal. More sophisticated style of writing. Not good with being caught off guard. Interacts better with adults. Gets frustrated in groups since they are fooling around and she is so concerned with her grades. Kids aren't patient waiting for her to respond. Struggles with reading comprehension. Getting a bit better advocating for herself. ALL autistic traits. Thinking back to seventh grade, I had always thought very highly of Peggy. I wondered if she remembered anything else about me that would be helpful for me to know, going into an autism evaluation. I knew that she no longer worked in the Shrewsbury schools, but teachers' contact information is usually readily available online. I looked Peggy up & I wrote her an email explaining my lifelong difficulties & how they led to an impending autism diagnosis. I attached a scanned copy of the meeting notes to the email, as well. However, since at this time, I had been a student in her classroom just over eighteen years ago & I hadn't seen or spoken to her in at least fifteen years, I had this underlying fear that she wouldn't remember who I was. I felt like I was a fly on the wall in school, barely saying a word & blending in with the background. I knew she'd had a lot of students since then & I thought I was easy to forget. Spilling my guts out to her only for her to not remember me would've been SO utterly embarrassing. This was in early August of 2022, by the way. It was only a couple of days before I heard back from Peggy & I was beyond relieved to know that she absolutely did remember me. Peggy sounded so delighted to hear from me, too. She described me as a very kind, shy, reserved student (with black-framed glasses if I recall correctly), but she admitted that she didn't think she had much more detail to give me. However, she did offer to chat by phone. And I eagerly took her up on that. If we chatted on the phone, I might be able to foster another connection with a caring & a supportive person & I really felt like that was exactly what I needed because like many autistic people, my life was extremely isolating. This blog post is about my interactions with Peggy & how her kindness & her compassion have changed my life. Peggy didn't know this going in, but I had a lot going on in my life at the time I reached out to her, most of it not even having to do with autism. Back in 2015, my maternal grandpa had a debilitating stroke that left one side of his body without feeling & completely took away his ability to process language (this is known as global aphasia). I unfortunately did not grieve the stroke properly & still to this day, I am in denial that it ever happened in the first place. Now that I know I'm autistic, this makes total sense as we do not grieve in the same way that neurotypicals do. My grandma was his devoted caregiver ever since. The year prior to when I connected with Peggy, my grandparents relocated to Shrewsbury from California because my grandma was dying from tongue cancer. She lived here in Shrewsbury for just two & a half months before succumbing to the disease (six months earlier than expected). While I never had much of a relationship with my grandma, watching my grandpa grieve the love of his life for over sixty years & worrying everyday that he would die of a broken heart was the hardest thing I have ever had to do. At the time I had reached out to Peggy, we had recently passed the one-year mark of my grandma's passing. I was also still getting into the groove of being a secondary caregiver to my grandpa. Due to the brain damage caused by his stroke, my grandpa would often say & do things that hurt me tremendously. No matter how much I tried to remind myself that my able-minded grandpa would never say or do such things, I just couldn't get the hurt to go away. This was particularly difficult for me to deal with because my grandpa & I have always been incredibly close. His hurtful actions were a complete one-eighty from how he'd treated me for the first twenty-five years of my life. All of these things would be difficult for anyone to cope with, but when you're autistic, you're handed a plethora of challenges in life that allistic, or non-autistic people have the privilege of never having to experience. And it's those challenges that make dealing with things like this significantly more difficult. Keep in mind that I didn't know that I was autistic when all of the above events actually happened, so I didn't understand why I reacted like this, why I reacted completely differently from the rest of my family. Ever since I was a young child; I have yearned for my grandparents to live close by & I was so, SO happy to finally have that; but now that I did, my life had become a complete circus. It's something you can't understand without living it.
On the autism forefront, just a couple months ago, I had learned that the reason why I have struggled so much throughout my life was because I was living with undiagnosed autism. It was the reason why:
That first phone conversation I had with Peggy was a breath of fresh air. Back when I was her student, I remember her being really easy to talk to & that was still the case. I filled her in on a lot of things, many of those things being things that hardly anyone knows about me, things that I'm ashamed of. The fact that I even felt comfortable enough to fill her in on those things, after all this time, speaks volumes about Peggy's character, the person she is; especially since I've always felt like I need to protect myself from people; I've always been afraid to show the real me. The way Peggy reacted to the things I told her was really, really comforting. She really took the time to stop & to listen to what I had to say & she didn't make me feel judged, guilty, or like I had done anything wrong. Every time I mentioned how something made me feel, whether it was a positive or a negative emotion, she validated it. And if she suggested something that I didn't think would work, I would explain why, & that was totally okay with her, too. She also told me how much she admired my courage in reaching out to her & that she was here for me. Having that conversation with Peggy gave me the courage to reach out to many of my other former teachers, as well. And while some of those other teachers gave me much more detailed insight than what Peggy could offer me; a few even telling me that an autism diagnosis would absolutely not surprise them; it was Peggy's kindness, support, time, & most of all, her compassion that made the biggest difference to me. That was what I needed more than anything else in the world. As I had other conversations with Peggy later on, she felt that she could no longer offer me the kind of support I needed. Her experience was with adolescents & I was an adult with adult problems looking into adult resources (which I now know are scarce). However, I can tell you that this is absolutely NOT the case at all. I have gone my entire life feeling like when I talk, NO ONE hears me & my feelings don't matter. Sadly, these are commonalities among autistic people. Peggy was the first person I talked to in many, many, many YEARS who really made me feel like she heard what I had to say & she valued my opinion. Plus, she was so, so, SO kind. And she was so incredibly compassionate, too. I have lived a lifetime of people being unkind to me; being critical of everything I do or say, everything I don't do or say, every facial expression I make or don't make. So, it's extra noticeable when someone IS kind; when someone accepts me as I am; when someone ISN'T judgmental; when someone really, truly CARES. When I looked Peggy up to make that first contact & I discovered that she was no longer a language arts teacher, but she was a special education teacher, I wasn't surprised. The notes that she made about me were much more insightful & helpful than the notes I came across from every single one of my other former teachers. Every single one of Peggy's notes was so SPOT ON, about me, AND about an autistic middle school girl. However, after having the interactions with Peggy that I had, I really, truly feel that special education was what she was meant to do with her life; it was her calling. The kids in her classroom are SO lucky to have her. I know she's changing their lives because she's changed mine & it's been twenty years now since I've been her student. (Typing that out makes me feel so old!) More recently, a couple weeks ago, Peggy's mom passed away. When I found out about her family's loss, I knew I needed to go to the visitation. While I've tried to thank Peggy for what she's done for me numerous times before, I didn't think I got my message across effectively enough. There was no better way to thank her, to tell her how much I appreciate her than by going to the visitation to support her & her family during their time of grief. While I was still waiting in line, Peggy caught my eye & gave me a reassuring smile, totally calming my nerves. I knew that the only reason she recognized me was because I had sent her a recent photo of myself back when I originally connected with her. (I look A LOT different now than I did when she knew me in middle school.) That day, during what had to have been one of the most difficult times in Peggy's life, between small actions she was taking & things she said, Peggy was still blowing me away with her kindness & her compassion. When I spoke with her in the receiving line, Peggy asked me about how things were progressing. The fact that she continued to show me so much care & concern while she was grieving the loss of her mom, once again spoke volumes about the absolutely wonderful person Peggy is. As much as I wanted to express the great frustration I was feeling due to things moving slower than molasses, as well as some of the resource people I was working with not only not seeming to know how to help a late-diagnosed autistic woman like myself, but actually making things worse; I didn't. There was a line of people a mile long behind me, all waiting to talk to Peggy & her siblings. Plus, I wasn't there to talk about my personal difficulties. I was there to give her my condolences, my love, my compassion, & my support; things that she had given me a couple years earlier that meant so, SO much to me. I really, REALLY hope that I'll have the chance to fill her in on those things & more one day, at a much quieter time, when I'm not feeling like I need to give her MY support. A few days earlier, when I mentioned to my mom that I was going to go to this visitation, she told me I was very brave for going alone. (This was the first time I had ever been to, or even thought about going to visiting hours by myself-- the couple other times I had been to visiting hours, my family was with me.) In my mind though, I had no choice other than to go to this. I knew that Peggy would never expect me to be there, but Peggy made such a big impact on me recently that I really felt like I needed to go. I am SO quiet; I have a lot of anxiety when it comes to social situations, especially with people I don't know; & I'm someone who really struggles with coming out of my comfort zone. But, when I feel this strongly about something, I do it. And I was SO glad I did. When I talked to Peggy about why I wanted to be there to support her & her family & what an impact she'd made on me, I knew she was really touched by my presence. And that really warmed my heart. So, as I wrap up this very long blog post, why am I telling you all of this? Well, it's because I think you can learn a lot from what Peggy did. What she did is a very good illustration of how doing something so simple can really turn someone's whole life around. When I reached out to Peggy, I was hoping for a little bit of insight, but I got something so much more meaningful instead. She was so unbelievably kind & compassionate, giving me her time & a listening ear. Things that I so desperately needed. And that made such an enormous difference to me in the lonely world that I was living in. 💙 During a recent family birthday dinner, my mom's cousin's husband made a comment about the fact that I probably didn't cry much as a baby or as a young child. The truth is, though, that that couldn't be further from the truth. In fact, as my dad told him, I was a very colicky baby with quite a loud cry for the first three months of my life. I remember family friends, neighbors, & some family making similar comments to both my parents & me ever since I was a little girl. We could always see their point because on the outside, I was a quiet, well-behaved, polite little girl who was comfortable interacting with adults. No, I didn't know how to start or keep a conversation going, but as long as I was talking to someone who could do that for me, that wasn't a problem. This is also often the reason why autistic girls who are now in their twenties & older are often not diagnosed until adulthood, if they are diagnosed at all. Little autistic girls often acted just like how I did growing up. They tended to be quiet, not cause trouble, did as they were told, & interacted well with adults. They were what my parents' friends would call a dream child. On the other hand, little autistic boys tended to be loud, troublemakers, disruptive, & had difficulty listening. Because of this, the parents & the teachers of these boys saw their behavior as problematic, which pushed them to get them evaluated for & diagnosed with autism spectrum disorder. The Girl Wearing The Mask: I have been told countless times by my parents' friends, particularly by the ones who have sons & no daughters, that they wished that they had a daughter just like me. I mean, I was the perfect child after all. A quiet girl who never caused any trouble. What else could a parent want? Growing up in a neighborhood full of boys, I remember sitting on my next-door neighbor's front steps, helping her pull dead flowers out of her large flowerpot while she braided my hair. I had the hair she so badly wanted to play with before her daughter was born. 😜 Given that picture I just painted for you, from the outside, I looked like I was any parent's dream child, so it was abundantly clear to me why my family's family & friends would think that raising a girl like me was easy. When comments like that were made to me, I just smiled & nodded my head, thinking to myself that they don't know what my home & school life was really like. The struggles I went through day in & day out. The worry I caused my parents. The struggles & worry that now make so much sense with an autism diagnosis. The Girl Behind The Mask:
Home Life: I experienced very intense dizzy spells when I was an infant & again from when I was six until I was seventeen. A big part of my & my family's life when I was growing up was revolved around preventing me from experiencing dizziness, or at least preventing dizzy spells from coming on when I was outside of our home. I remember the traumatic details of it so vividly that it's as if it is happening right now. I would be lying in bed & I would feel like the entire world was going round & round. The world felt like it was spinning so fast all around me, frightening me more than I've ever been frightened before. I remember screaming & crying at the top of my lungs & gripping my dad's hands for dear life. Nothing my parents could do or say would help. Nothing helped other than a full night's sleep. I was always told to try to go to sleep when this happened, but I never could unless it was actually bedtime. Yes, it was just as bad as I'm making it seem. If you would like to read more about my experiences with dizzy spells & my very intense fear of being dizzy, I go into even more detail about this in my previous blog posts about the coronavirus pandemic, about vestibular processing, & about vestibular overload. While I'm still very prone to dizziness to this day, it is such a relief that it no longer affects me like it once did. Due to this trauma I faced when I was growing up, feeling dizzy continues to be one of my top fears. So, I still live my life in a way where I do everything I can to prevent feeling even slightly dizzy. I know what my triggers are, I am very aware of my body & how certain things make me feel, & I have coping mechanisms to help the feeling of dizziness be more manageable. This is one of the reasons why when I drink alcoholic beverages, as soon as I start feeling like there is alcohol inside of my body, I stop drinking. The happy & relaxed feeling that you get when you drink is quite frightening for me & is something I want to do everything in my power to avoid. School Life: Academically: I couldn't learn like other students my age could & my very observant fourth grade teacher picked up on it, suggesting to my parents that they get me evaluated for learning disabilities. When I was ten, I was diagnosed with a nonverbal learning disability & processing speed difficulties. I now know that this was a misdiagnosis because many of the symptoms of nonverbal learning disabilities are the same as the traits an autistic child might have. Girls of my ability level were just not being diagnosed with autism back then. When I was in fifth grade, my parents took me into Boston to have further learning disability testing done. The results showed pretty severe deficits, which ended up being caused by a medication my neurologist prescribed me for my dizzy spells (discussed above ↑), which doctors believed was either a migraine or a seizure variant. My parents were super upset because this testing was very expensive & was not at all helpful. Unfortunately, this particular medication had no impact on the frequency or on the severity of my dizzy spells either. Socially: Because I wasn't well-liked by my peers, I was bullied pretty severely from the time I was in first grade until I was a college senior. This is a commonality among us autistics. Every autistic child & every autistic adult you talk to will likely have something to say about bullying. Knowing that I have always caused my parents extra worry, I tried to minimize the pain that I was experiencing in front of them. I think this is a lot of the reason why the effects of the bullying still have a profound effect on me to this day. Even at that young age, I was trying to be the best daughter I could be. 💙 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. 💙 The above was a statement my dad shared with me a couple nights ago. 🥰 All my life, my dad has been the one I could count on to say things like that to me, things that I need to hear. Let me tell you more about the background of this statement. My mom had recently made an appointment for my grandpa & herself to get the new COVID vaccine. Finally having convinced my dad to get the vaccine earlier than he had originally wanted to get it, she was trying to add him to the vaccine appointment group she had made for my grandpa & herself. That's when a thought came over me: should he really be getting the new vaccine then? My dad had been experiencing some kind of allergic reaction the past several days, so his doctor prescribed a steroid to help with the itchiness he had been experiencing. Now, this steroid helps with allergies & all kinds of autoimmune disorders. I know much more about this medication & how it works than I wish I did because one of my dogs took it many years ago, when he was very sick with a blood clotting problem. Knowing that this medication works so well by suppressing the immune system, I asked my parents about this drug before my mom added my dad to her appointment group. When you get a vaccine, you want the best immune response possible, so taking a medication that makes your immune system not work as well while you're getting a vaccine— that's probably not a good idea. My dad agreed with me, so he is holding off getting the vaccine until after the ten days on the steroid has passed & his immunity is back to normal. Out of curiosity, later on that night, I asked my dad if he would've thought of the impact of the steroid he's taking on his immune response to the new COVID vaccine on his own. He told me he definitely wouldn't have & he would've just gotten the vaccine on an earlier date, like my mom & I wanted him to. Feeling happy with myself for speaking up while trying to be humorous at the same time, I said something along the lines of, "See, sometimes having an immune- & germ-obsessed daughter can be beneficial!" If you'd like to read more about my experiences being a germaphobe, please feel free to go back & read my blog posts about how the coronavirus pandemic turned me into a "normal" person & how vestibular sensitivities effect my daily life. I then talked more about how he can thank my obsession with germs & the immune system, as well as my dog, Teddy for my knowledge about this steroid. If it wasn't for Teddy's illness, I wouldn't know so much about how this drug affects your body. That's when my dad said to me, "Everything about you is a blessing to me." No one's ever said that to me before, so my immediate reaction was that my dad was just being sarcastic again. I was sitting there talking about the immune system & my germaphobic tendencies, so hearing that that was a blessing really caught me off guard. I mean, I don't consider that a blessing to ME (it's so hard to live that way), so how could it be a blessing to someone else? Germaphobia is a BIG part of who I am. It turned out that my dad was being 100% truthful in that moment & wasn't being sarcastic at all. "Everything about you is a blessing to me." That was something I needed to hear. If you love me, tell me. If you're proud of me, tell me. If I look pretty, tell me. If I'm doing things right, tell me. If you love that design I just created, tell me. If everything about me is a blessing to you, tell me. I need to hear all those things & more. I've gone my whole life with terrible self-esteem & being super dependent on validation from others. Every positive thing you think about me: I need to know about it, I need to know how you feel. That's what keeps me going & I know that that's also why words of affirmation is my love language. What Are The Love Languages?:
The term love language refers to the way that a person prefers to express & receive love. While the term was first introduced to us by best-selling author, speaker, & marriage counselor Dr. Gary Chapman, the term is used more loosely today, referring to love that is expressed between romantic partners, family members, friends, & more. In Dr. Gary Chapman's best-selling book, The 5 Love Languages: The Secret to Love that Lasts, he proposed five specific love languages, which are:
If you'd like to learn more about the five love languages, you can visit Dr. Gary Chapman's love language website to take quizzes to learn more about yourself, as well as to take a look at other resources & videos he has available, all of which provide valuable insight. As my eighth grade school year neared its end, there was so much excitement & chatter among my classmates about high school. High school. Now those were two words I never wanted to hear. If you had asked me about anything having to do with high school that year, one of two things would have happened:
Throughout my life, each transition that I've experienced was harder than the one before. Now, I know why. Autism. We're known for having a tough time with change. Middle school wasn't a time that I would ever want to relive (I mean, who would?), but high school? Now that was terrifying. Eighth grade was the first time I ever had a male main subject teacher. My science & homeroom teacher, Gil, really took a liking to me. He gave me special treatment & gave me privileges that no one else in the class was allowed to have. He even intervened in situations where I didn't think it was necessary. He simply wanted to be there to take care of me. Being someone who didn't (& still doesn't) trust men, I considered myself pretty lucky to have had Gil be my first experience with a male teacher. He's retired now, but I've been able to reach out to him a few times since my college graduation to thank him for being so good to me. Anyway, Gil knew that I was nervous about going to high school, so he met my parents, my grandparents, & me one day over spring break to give us a personal tour. He used to work at the high school, so he knew it pretty well. My town was growing so fast, that the eighth grade needed to be moved to the high school for several years because there was no longer room for it in the middle school. By the time I entered eighth grade though, the grade had moved back to where it was supposed to be. I'm not sure how much that tour helped my transition to high school because just the idea of going to high school was SO upsetting. I knew I had no other choice because staying in eighth grade forever & skipping high school weren't viable options either. Having that love, care, & extra time from a teacher who could've been spending his spring break doing so many other things meant so much to my family & me. My First Day Of High School: Now, this is something I hate to admit, but on the first day of high school, as I was walking to the bus stop, there were big, ugly, fat tears that wouldn't stop forming. Like many parents, ever since I started school, my mom has always taken a picture of me on the first day. I couldn't pull myself together enough to take a picture that morning, so my mom took a picture of me after school instead. To this day, when I look at that picture, all I see is a sad, scared girl hidden behind the smile on her face. See below↓. On that particular morning, my next-door neighbor was looking out her front door at me walking to the bus stop, full of excitement for me. My neighbor was someone I have been very close to ever since I was a toddler, but I couldn't manage to turn to look at her for even a brief second because my face was so streaked with tears. Luckily, my mom could be my voice that morning, providing an explanation for my strange behavior which was completely embarrassing. What Exactly Was SO Terrifying?: There were three main things that were upsetting about going to high school.
I know that this is a very vulnerable & heartbreaking post, especially for those who know me personally. Please know that everything written in this post was written with my heart & soul & is absolutely true. School is very, very difficult for us autistics & my experiences are illustrations of why this may be. 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:
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:
On my way home from my dog walking client's house today, I stopped at the grocery store to pick up a few things. I typically do this once a week. I wouldn't survive the grocery store without self-checkout. I seriously wouldn't. When I go shopping, I don't like to interact with store employees & actually cringe if an employee asks me if I'm finding everything I'm looking for alright. The Grocery Store Without Self-Checkout: About ten years ago, I worked as a cashier in a grocery store called Market Basket (worst experience of my life!). I would not recommend working as a cashier to any diagnosed or undiagnosed autistic person, but I'll tell you more about that later. Anyway, Market Basket prides itself as a full-service supermarket. When I worked there, I was told that Market Basket supermarkets do not have self-checkout because it is poor customer service. This is because it goes against their people taking care of people mentality. When I first heard about Market Basket's stance on self-checkout, I thought that that was the worst idea EVER. My opinion hasn't changed since. I am someone who depends on self-checkout, so any store assuming that people prefer cashiers over self-checkout isn't catering to all of their potential customers' needs. People who prefer to be checked out by a cashier would wait in the cashier line, while people like myself, who prefer to utilize self-checkout, whatever the reason may be, would go to that section of the store for check out instead. A new Market Basket opened in the town my parents & I live in & my mom's completely obsessed. She does all her shopping there now, even though it is a little further away than Stop & Shop, the grocery store she used to do all her shopping at. Several weeks ago, my mom suggested to me that I shop at Market Basket, as well. I asked her if Market Basket had self-checkout because I didn't feel comfortable shopping there if it didn't. I shared with her what I was told about self-checkout when I was a Market Basket employee. At first, my mom said that there was definitely a self-checkout section. However, she then realized that it wasn't self-checkout, but was express checkout. I still haven't stepped foot in that grocery store for that very reason. I mean, it doesn't make sense for me to go in there knowing that I'm not gonna be able to buy anything because the supermarket doesn't cater to my needs. When I mentioned the self-checkout issue to my dad, he said that whether or not having or not having self-checkout is good or bad customer service depends on who you're asking. I completely agree. I think that supermarkets who do not have a self-checkout section are actually providing poor customer service because they are not catering to all of their customers' needs. This is the exact opposite thing Market Basket is trying to achieve. I would think that extroverted & technology-illiterate people would be the type of people who would prefer cashiers over self-checkout. However, would these people think that the mere existence of a self-checkout section in a store is poor customer service? I don't think so. Curbside Shopping Or Self-Checkout?: There were many aspects of the coronavirus pandemic that made my life better. No longer needing to walk into stores to pick up the items I needed was one of the many things about COVID that benefitted me. I understand that there are many people who lost people they loved because of the virus. Luckily, I was not someone who lost anyone due to COVID, although I deeply sympathize with those who did. With the exception of the existence of the germ (that still sadly dictates my life), our way of life was actually better for me than the way we lived prior to the pandemic. The creation of curbside shopping was one of those things. Not having to go into stores to do my shopping & only having to have minimal interaction with one store employee who brought my items to my car was a literal dream. However, the thing that was less convenient was having to pick the time I will be at the store, several days ahead of time. I could never be spontaneous about when I was going to pick up my items, which is the kind of shopper I am. I like to be efficient with my time & with the gas in my car & it's hard to do that several days ahead of time, when I don't know for sure what the day is going to look like. These days, I prefer self-checkout over curbside shopping because it gives me much more flexibility. Plus, I generally feel safe in stores as long as I'm wearing a mask & I don't have prolonged contact with anyone. My Experience With Self-Checkout TODAY:
Even with how much I LOVE self-checkout, there are many problems with it. One of the problems is that the scale is WAY over-sensitive. The scale on a self-checkout station knows how much every item should weigh & it freaks out if it senses something that weighs even slightly more than it should. I get that this is the store's way of preventing theft, but there has to be a better way than having these machines freaking out at people all the time. I know that many cities & towns instituted this a long time ago, but my town JUST started charging for disposable grocery bags last month. Items fit much more nicely into paper grocery bags than they fit into insulated reusable grocery bags, which I was trying to use because it was ninety degrees outside. Most of the items I purchased were items that were prone to melting, plus insulated bags were the only kind of bags I had with me. I still have not gotten the hang of bagging groceries into reusable bags in a way that doesn't make the machine freak out. When the machine freaks out, I'm used to the person overlooking the self-checkout area coming over to the machine & simply putting his or her key in, so that I can continue scanning the rest of my items. The woman in charge of the self-checkout area today didn't do that, however. Instead, she insisted on having a conversation with me where she was telling me how to bag groceries & she became very accusatory. She even told me that she was trying to help me solve a problem, when I didn't think there was any problem that needed solving. The machine simply sensed some of my own body weight when I was trying to make the items fit into the bag better & it thought it detected an unpaid item. Any smart person could've told her that. However, this woman who came over to help me even showed me the surveillance video of me (on the self-checkout monitor) bagging groceries, like she was trying to prove to me that I was attempting to steal a $4 item. The item in my right hand was the item that I had just scanned that caused the machine to freak out. And the item in my left hand was the item that I was about to scan that I hadn't scanned yet. This is the way I have scanned groceries for years, including when I was a Market Basket cashier. This is the first time I have ever had a problem with this method. She then continued on by telling me that I only scanned one of the items I was holding & then proceeds to scroll through the entire list of items I had scanned thus far. I didn't think I was doing anything suspicious. I was simply an autistic woman who wanted to be left alone, so I could go about my day. I was beyond flustered with this woman & with my experience in the self-checkout area today, but am I going to go to a cashier the next time I go grocery shopping? Absolutely not; I'm simply going to cross my fingers AND my toes that this woman isn't there or if she is, she leaves me alone. That is how much I dislike interacting with cashiers when I shop. When There Is No Self-Checkout Option: A store not having a self-checkout option isn't a problem for me. It's the stores who think of self-checkout as a negative thing that I have a problem with. I can name several stores that don't have a self-checkout option, off the top of my head. PetSmart, Michaels, & Kohl's don't have self-checkout, for example. The last time I purchased items at any of those three stores, or at most other stores that don't have the self-checkout option; I utilized the purchase online, pick-up in store option. When paying via cashier is necessary, of course I oblige, but I only do that when it is absolutely necessary. Vestibular overload happens more frequently than you might think. And it happens WAY more frequently than what is comfortable for me. I mean, I'm comfortable with it happening, NEVER. When it happens, it is pretty terrifying & it causes sheer panic, to be completely honest. As I've grown up, I've become skilled at knowing what my triggers are & either avoiding them completely or coming up with coping mechanisms that cause my symptoms to be milder & more in my control. However, because I can't control every situation, it's just not possible for everything in my life to be under my control all the time. Sometimes, vestibular overload happens out of the blue & other times, it happens due to a particular situation. I talk more in-depth about what the vestibular sense & the two other hidden senses are in my previous blog post about vestibular processing & the SEVEN other senses. When Vestibular Overload Happens Out Of The Blue: When this happens, it's pretty terrifying because there are absolutely no warning signals & I am not at all able to sense that it's coming. While I did outgrow my dizzy spells when I was seventeen, I do sometimes still struggle with dizziness-related issues. For example, just this past fall, I was taking my dogs for a walk around my neighborhood loop (the street I live on is the shape of a horseshoe, so if you just walk straight, you end up where you started). Then, I felt a wave of dizziness start to come over me. I was beginning to panic because I was alone with my two tiny, six pound dogs who I had to keep safe. I also have this intense fear of being alone while I'm dizzy if I'm outside of my home. I'm sure that the only reason I have this fear is due to the dizziness trauma I endured when I was growing up. Thankfully, this kind of dizziness is not at all debilitating, like it used to be, though. I opened the locator app on my phone to see if my dad had gotten home from work yet & luckily, he had. So, I called him to see if he could walk the opposite direction & meet me & my pups. The second I could see my dad walking towards me, I felt a wave of relief because I was no longer alone. Knowing that I would have assistance, support, & someone to take care of my precious pups if something were to happen to me was very relieving. Luckily, nothing did happen that I needed his help with. But, him being nearby helped immensely. If this situation had happened when I was at home, I probably wouldn't have even told anyone & just sat on the couch until it was over. Being this afraid of dizziness can be very overwhelming. Experiencing Expected Vestibular Overload:
This is actually what gave me the idea for this blog post. I currently walk small dogs & pet sit for a living. However, I am hoping that Splashed With Water will soon become my main source of income with pet care becoming more of a side gig, once this blog & online boutique gain more exposure & traction. I have a client who lives along a very busy & high-speed road with no sidewalks. However, they live just a few houses away from a very quiet street with almost no traffic. My job is to get their dog from the house & take her to that little, quiet street for her walk. I can do it safely by walking in people's lawns rather than in the shoulder of the road. The houses on this street are very far away from the road, so I'm sure no one notices that I'm walking in their front yards. However, this is where the problem comes into play. This dog likes to have zoomies along this very busy & high-speed road on our way home from our walks. Zoomies are a good thing for dogs, but are not a good thing for me & are not a good thing for this particular situation. What Are Zoomies?: If you have a dog or are familiar with dogs, you likely know what zoomies are, but if you don't, here's your answer. Zoomies are explosions of energy that dogs have, which cause frantic running around in circles &/or spinning around. They are frequently caused by an excess buildup of energy that dogs hold on to, which is then released in one big burst. Different dogs have different triggers for zoomies. Some have zoomies during certain times of day, after a bath, or after stressful situations, like visiting the vet. Clearly one of this dog's triggers for zoomies is going for walks with ME! This dog having zoomies is stressful for me because she's having zoomies while she's on (I'm estimating) an eight foot leash that I'm holding onto. I cannot spin in circles. Period. Plus, I'm responsible for this dog's safety while she's with me. Like I previously stated, she likes to have zoomies when we're walking along a very busy, high-speed road. Luckily, we're walking on people's lawns rather than in the shoulder of the road, which makes this activity slightly less dangerous than it could be. Whenever this dog has zoomies, it causes some panic inside of me because it makes me feel unsafe myself. I tend to find myself taking deep breaths to try to calm myself down, hoping she'll get it out of her system quickly, so that I can get her home & be on my way. 🤞🏼 I mean, as much as I want to, I can't say to my clients' dog, "Hey, I'm autistic & struggle with vestibular overload. So, can you please not have zoomies outside, along a very busy, high-speed road, while I'm trying to keep you under control & safe via leash? Because no matter how much I want to chase you, I can't run around in circles." & expect she'll understand. 🤪 This situation just happened earlier today. Multiple times. I love this dog, but I just wish zoomies could be reserved for inside the house! You probably know that the five senses are sight, hearing, touch, smell, & taste, but did you know that there are actually eight senses? The three hidden senses are: The Vestibular Sense: Vestibular receptors, located in our inner ears, help us process movement & balance. The vestibular system helps us to distinguish between speed & the direction of movement. Many autistic people are either vestibular under- or over-responders. People who are vestibular under-responders seek intense or prolonged vestibular stimulation & may enjoy frequent rocking, swinging, bouncing, jumping, or other activities involving intense movement. People who are vestibular over-responders may react negatively to a wide range of vestibular input. They are often prone to motion sickness & have anxiety during activities that involve movement through space, such as walking down the stairs. They also tend to struggle with body control & coordination. I am someone who struggles a great deal with vestibular sensitivities. This is why numerous times throughout this blog, I have referred to vestibular processing issues & anxiety around certain things causing dizziness. Because I keep referring to vestibular sensitivities, I thought it would be good to take a step back & actually explain what I mean by that. The Proprioception Sense: Proprioception receptors, located in our muscles & joints, provide information about where our bodies are in space. This system impacts our sense of body awareness & coordination. It also helps to create smooth movement. Many autistic people are either proprioception under- or over-responders. People who are proprioception under-responders struggle with knowing how much pressure to apply. They may break pencils or use too much pressure when shaking someone’s hand, for example. They may enjoy jumping, bumping, & crashing into people & objects. They tend to be unaware of safety & can be accident-prone. Children tend to prefer rough play & seem to be constantly wrestling with siblings or other children. They tend to stand too close to others & touch them without permission. And they may crave pressure & bear hugs. People who are proprioception over-responders may are easily overwhelmed by touch & movement. They tend to avoid physical contact, like hugs & other types of contact or pressure. They also tend to become anxious in crowded spaces or when standing close to others. Children who are proprioception over-responders tend to avoid physical play & appear timid around others. They also may dislike slides, swings, other playground equipment, & phys ed class in school. I also struggle with proprioception sensitivities, but because I am now an adult, these issues are much less bothersome now than they were when I was a child. The Interoception Sense: Interoception receptors, located on our internal organs, provide us with information about our internal body & emotional states. These receptors tell us when we're hungry, thirsty, hot, cold, in pain, or needing to use the bathroom. They also tell us if we're happy, sad, or anxious. People who are interoception under-responders may be unaware of pain & temperature signals, not know when they're hungry or thirsty, be unaware of the urge to eliminate until it is urgent, or have alexithymia, otherwise known as the inability to identify his or her own emotions. People who are interoception over-responders may always be hungry, thirsty, or having to use the bathroom. They also tend to experience more pain & pain lasts longer. It is common for over-responders to have frequent sicknesses because even the mildest of illnesses cause them to feel terrible. Stereotypical Sensory Sensitivities:
In movies & on tv, you'll notice that autistic characters are often very sensitive to light & sound. Because of this, they often wear sunglasses, noise-canceling headphones, or ear plugs to relieve themselves from intense sensory input. Autistic people also tend to be very sensitive to touch, where they can only tolerate clothing made from certain types of fabric & they cannot tolerate tags in their clothing or seams in their socks. It is also very common for autistic people to dislike being touched. Lastly, autistic people commonly dislike very strong flavors in the foods they eat. They tend to not like spicy, sour, or minty food. The beige food diet is common for autistic people. People who prefer this diet stick to eating only food that is beige in color, such as plain pasta, bread, & chicken nuggets. My Sensory Sensitivities: I don't experience this world as a stereotypical autistic person, in the sensory sense. Most sensory sensitivities that are common to autistic people are not issues for me. In fact, I was not aware of many of my sensory sensitivities being at all related to autism until I began learning more about autism, as I was pursuing a diagnosis. Until pretty recently, I thought that what I was experiencing were quirks in my likes, dislikes, & behavior. The sense that is definitely the most sensitive & bothersome for me is the vestibular sense. Sight: I do not have any visual sensitivities. Bright lights do not bother me, like they tend to bother the stereotypical autistic person. However, when I was growing up, certain frequencies of lighting would bother me because they caused dizzy spells, which you can read more about in my previous blog post about how the coronavirus pandemic turned me into a "normal" person. For example, the first time I ever successfully ate in a Rainforest Cafe, I was in my twenties. My dad & I were visiting family in Texas & we were in San Antonio for the day. We wanted to eat lunch along the River Walk & the restaurant everyone decided to eat at was the Rainforest Cafe. Something about the atmosphere in that restaurant caused dizzy spells because this was the first time I had ever eaten in that restaurant without getting sick. Because of my history with that restaurant, both my dad & I had anxiety about eating in there, but it was a success! I think it was probably the Rainforest Cafe's lighting that was the issue, but I don't know for sure. Also, while I don't have issues with bright lights, I do have issues with blinking or flashing lights & lights that are moving, particularly in circles. That is more of a vestibular issue though, which I'll discuss more below. Hearing: I do not have any auditory sensitivities. In fact, I really love listening to loud music! Touch: I do not have any of the stereotypical tactile sensitivities involving the clothing I wear. I can generally wear all fabrics of clothing & I am not bothered by tags or by the seams in my socks. I am sensitive to the sheets on my bed touching my feet though, so I have to sleep with socks on. However, as I mentioned in my first blog post, I am very sensitive to water touching me, particularly on my face & in my eyes. Because of that, I can't wash my face with soap in the sink. I have to use a washcloth instead. I also dislike the feeling of breezes. For example, I don't drive with the windows open & I actually point the vents away from the driver's seat in my car. I am also picky about who touches me & how I'm touched. I love experiencing physical affection from family & people I'm close with. However, hugging people that I do not have a certain level of established comfort with is uncomfortable. I also greatly prefer hugs over kisses & dislike romantic touch. I remember that on the first day of school when I was a sophomore in high school, my biology teacher put her hand on my shoulder as I was walking to my desk. I disliked that so much that I couldn't stop thinking about that for the whole rest of the year. If she had done that after I had an established relationship with her, I wouldn't have thought anything of it & it probably would've even made me feel good. But, because it was the first day of school & I didn't have a relationship with this teacher, it really bothered me. Smell: I do not have any olfactory sensitivities. Taste: The gustatory sense is the one sense where I am a stereotypical autistic person. I dislike strong flavors of food & I tend to stay away from spicy & sour food. If I'm eating in a restaurant & the waitress asks me if I would like a lemon in my water, I always decline it. In cases where I am not asked whether or not I would like a lemon & my water arrives with a lemon in the glass, I always take the lemon out. I also don't like mint, even in chocolate or in ice cream! I tolerate it in toothpaste though. Lastly, I really like my drinks cold (with A LOT of ice) & my food hot (temperature-wise). Vestibular: The vestibular sense is the sense that is by far the most sensitive & interferes with my daily living the most. In fact, that is why the graphic I chose to use for this blog post is supposed to resemble spinning. I am definitely a vestibular over-responder & I have a lot of fears that are all caused by this sensitivity. I listed many of these fears in my previous blog post about how the coronavirus pandemic turned me into a "normal" person. I could write a novel about everything that causes dizziness, so I tried to pick the things that stuck out the most in my mind. I know what I generally can & can't handle, so I either try to avoid certain things or I use coping mechanisms to deal with certain situations that most people would think nothing of. This is also why I don't know how to ride a bike. Embarrassing, but true. An example of a coping mechanism I use is how I deal with glass elevators, which really bother me. I have learned to find a screw or another stationary object inside the elevator to focus my eyes on until the elevator stops moving. An example of a situation that caused vestibular oversensitivity took place at a family wedding when I was in middle school. My mom's cousin's husband wanted to dance with me & took me to the dance floor. I remember really struggling with that dance because he didn't know to not spin me & I wasn't comfortable enough with him to tell him to stop. My grandpa, who I call Gung-Gung, took me to dance right afterwards & he didn't spin me because he knew how sensitive I was. The difference & the relief that I experienced when I danced with my Gung-Gung was phenomenal. Proprioception: I have significant proprioception sensitivities, but luckily, these things no longer affect my adult life. When I was a child, I felt unsafe on playground & climbing equipment if other children were also using it. I was also unable to engage in age-appropriate physical play with other children. Phys ed was traumatizing. In fact, what I remember about my elementary school phys ed teacher is that she scolded me for running away from a fast-moving soccer ball & she didn't scold my peers for laughing at me. I was truly terrified of that ball & I was only doing what I could do to protect myself. In high school, the transition between classes & the transition from class to the buses or the parking lot was terrifying because I thought I was going to get hurt from navigating down a staircase among a fast-moving stampede of teenagers. Interoception: I do not have significant issues with interoception, but I occasionally will experience alexithymia. I don't have any trouble identifying intense emotions, but I sometimes will have difficulty distinguishing between closely-related emotions or more neural emotions. I know this is a topic most people are tired of hearing about, of talking about, but let's talk about COVID! This is a topic that I've been really looking forward to writing about, well... because I know my experience throughout the coronavirus pandemic isn't like other people's, so I wanted to share my experiences. We made it to what the entire country is calling the end of the coronavirus pandemic, but I just can't see it that way. I can't picture myself EVER seeing it that way, as sad as that is for me to admit. Yes, I still [mostly] wear a mask when I'm indoors, unless I'm eating or drinking. Yes, my immune system is perfectly functional. No, I don't have an autoimmune disorder & I don't take any immune-suppressant drugs. So, why do I wear a mask then? Well... I have a very severe case of germaphobia. I was in the bank this morning, taking care of some business with my parents & of course, I was the only one in the bank wearing a mask. It would've been physically impossible for me to work with any individual person for more than a couple of minutes if I wasn't wearing a mask. Why? Anxiety, of course! After being in her office for several minutes, the woman who we were working with asked me if I would feel more comfortable if she wore one also. Of course, I told her, "No, it's fine for you not to wear one." Even though I completely understood where she was coming from, being asked that question made me super uncomfortable. I hate that the world went back to pre-COVID times, where wearing a mask is something you just don't do. I felt like I was being looked at like I had three heads, being the only one in the bank who was wearing a mask. But, that's what I needed to do in order to access the services my parents & I needed. If I had a sprained ankle, so I hobbled in on crutches or wore a boot, people wouldn't wonder why a person like myself would need to utilize equipment like that. Because that's a physical injury that people can see, they don't wonder what's wrong with you. For me, wearing a mask makes my invisible disability visible. I look young & healthy, so I know people wonder why there's a mask on my face. However, let me also mention that many autistic people cannot tolerate wearing a mask due to sensory sensitivities. Masks can cause some autistic people to not be able to function, to have meltdowns, to have shutdowns, or all of the above. On the other hand, many autistic people are germaphobic, just like I am. COVID-19 has completely exasperated my lifelong fears of germs & illness. Living in a world with the existence of COVID is my literal nightmare. When I've told doctors, autism resource people, & anyone else I've spoken to that I'm very germaphobic, so I've really been struggling living through this time, a common response that I get is, "Yeah, I used to be too, but then I got COVID & it wasn't so bad, so I'm no longer that worried about it." Those people don't get it because COVID has absolutely nothing to do with me being a germaphobe, it only exasperated my fears. Sadly, I do not remember a time in my life where germaphobia wasn't a problem, as I've experienced an extremely intense fear of germs & illness thirty years prior to COVID-19 even being part of our vocabulary. A Germ-Obsessed Child: There was never a time in my life where I didn't have an obsession with germs. In fact, my parents will tell you that ever since I was old enough to speak, whenever they had the news on & the news-anchors were talking about an illness, whether it was about the flu season, a measles outbreak, etc., I would repeat over & over again, "What sick? What sick? What sick?...". They say that a child's personality traits really start to show when they're around two years old. I am proof in the truth behind this statement. My parents didn't know what they were in for because their little germ-obsessed toddler never lost her germaphobia as she grew up. In fact, my germaphobic tendencies sadly only intensified with age. Illness-Related Trauma: When I was six years old, I got super sick with the flu & as a result, I developed a really high fever. Not a go to the hospital high fever, but a high fever. I believe that the fever I got from the flu is what caused these extremely debilitating dizzy spells that I luckily outgrew when I was seventeen. These dizzy spells were absolutely traumatizing & they usually caused me to become extremely nauseous & vomit, as well. The only thing that ever got them to subside was sleep, but ever since I got past the napping age, I have never been good at sleeping unless it was actually bedtime. Even going to sleep at bedtime wasn't always easy. I have been to countless doctors & had countless tests done, including an abnormal EEG, in order to figure out the cause of these spells. Unfortunately, it remained a mystery to doctors. The closest we came to figuring this out was that it was probably either a migraine or a seizure variant, or both. Migraines & seizures are comorbidities that autistic people often struggle with, but I didn't know I was autistic during this time. Fear Of Dizziness Because of my history with dizziness, I have fears of all things that cause dizziness or cause issues with vestibular processing. Here are some of them:
How The Coronavirus Pandemic Turned Me Into A "Normal" Person:
When the pandemic first began in the spring of 2020, my parents joked with me & told me that now, I'm finally a "normal" person. What they meant by this was that everything the doctors were recommending we do to stay safe & healthy were habits that I've had ever since I was a young child. I didn't wear a mask or stay six feet away from people until doctors recommended we do that, but literally everything else that they recommended was already a habit, & it had been practically my entire life. My brother even jokingly told me that I should sell my hand sanitizer on eBay because it was sold out everywhere & I had a mountain of it at home. Here are some (but not all) of the things I was doing &/or feeling long BEFORE COVID-19 was a part of our vocabulary:
Things NOT To Say To Me: "COVID Isn't That Bad. It's Just Like The Flu!" The last time I came down with the flu, I was six years old & it was the time I described above. COVID being compared to the flu will only make me freak out. I get the flu vaccine every year & I've gotten every COVID vaccine I'm eligible for. People are experiencing vaccine fatigue, but I can tell you that I'm not. I wish I could get a COVID booster every four months because once it's been more than four months since my last vaccine, I no longer feel safe being around people. "You Just Have To Accept That We're All Eventually Gonna Get COVID." While I know this is true deep down, it's not something I'm able to accept. I have never had COVID at this point & I intend to keep it that way for as long as I can. When the time comes that I do eventually test positive for COVID, it's gonna cause panic. I just know it. "You Don't Have To Wear A Mask In Here. I'm Vaccinated." If I felt like I didn't need to wear a mask, I wouldn't. I don't like wearing a mask, I just don't feel safe without one. If vaccines protected us from illness for an extended amount of time, I would consider not wearing a mask. Since that's not the case, that statement only causes discomfort because it makes me feel like I'm making the wrong choice by wearing a mask. "Are You Really Gonna Wear A Mask Forever?" Asking this question really doesn't make any sense because truthfully, I probably am, unless COVID & all illnesses become nonexistent, which isn't going to happen, at least not in my lifetime. I often blame the fact that I'm wearing a mask on my grandpa because he is ninety years old & is in the high-risk group. However, that isn't the truth & I just use that as an excuse to make myself look better to people who I'd rather not share this quirk with. In closing, please remember that you'll never know for sure what someone else is dealing with, unless they come right out & tell you. If you see a seemingly healthy, young person wearing a mask, don't tell them it's okay to remove it or look at them & wonder what's wrong with them. Wearing a mask is just as okay as not wearing one. It is our personal choice & our comfort level. If I felt like it was possible for me to walk into a store without a mask covering my face, believe me, I would. I don't enjoy wearing a mask, I just have no other choice. For me, I have two choices: to wear a mask or to hibernate for the rest of my life. When I first disclosed my autism to my family, friends, & some former teachers; I received the following email response from one of my mom's cousins: Kim, I’ve read and re-read your email. I was super impressed with you when you came to take care of your gung-gung and am even more impressed now. I am fascinated by your story and the extent you are taking to understand your past, present so that you can move forward. I can tell that it has been monumental for you to put a name to explain all of the struggles you have had. I’m happy for you and if you spent any amount of time blaming yourself (like we all have a tendency to do). You now know, it wasn’t you. While I was disheartened to learn the extent of what you’ve been going through, it was equally troubling to learn that your delayed diagnosis was primarily due to your gender. Another example of how these stereotypes can do real harm. But you are not focused on that, you’re focused on moving forward. Everything in your email points to that. Again, so much respect for you. Thank you for putting so much care into this message. Thank you for including me. If I have said anything that does not strike the right tone, let me know. I am processing and want to learn. What my mom's cousin is referring to in the line that I made bold, is the trip I made to my grandparents' home in California in the fall of 2019, about three & a half years ago. My grandma, who I called Haw-Bu, was recovering from having part of her tongue surgically removed due to a malignant tumor & because I had so much flexibility in my schedule, I planned to stay with my grandparents for two weeks to help out during my Haw-Bu's recovery. However, my Haw-Bu ended up having numerous complications due to the surgery & needed to stay in a rehabilitation facility to gain her strength back before she could safely live at home. So, I ended up extending my stay by another week & stayed for three weeks instead of two. Also, rather than helping out both of my grandparents, I became my grandpa's primary caregiver during that timeframe. I was responsible for the usual caregiving & household responsibilities as well has driving my grandpa, or my Gung-Gung as I call him, to & from the rehabilitation facility everyday so that he could visit my Haw-Bu. My Gung-Gung survived a major stroke several years earlier that severely disabled him, so he couldn't live in his house alone. I had turned twenty-nine just before making this trip. That is a lot of responsibility for any person, but it's especially a lot for a young person, particularly one who had so many different mental health challenges & now I know autism, as well. Let's talk about how autism, diagnosed or not, affected my caregiving responsibilities:
Social & Communication Deficits
Excessive Adherence To Routines & Resistance To Change
Interests That Are Abnormal In Intensity & Focus
Hyper-Reactivity To Some Sensory Input
Prosopagnosia
Topographic Agnosia
I'm feeling kind of sad as I type this out because my aunt & my grandma were visiting for the past several days & they left this morning. Side-Note: I tried to blog as much as I could while my aunt & my grandma were visiting, but posting blogs are very time-consuming, so I could only get one blog posted while they were here (sorry!). It takes me anywhere from one hour to several hours to put one blog post together, depending on the blog's topic. I design all graphics that go in my blogs myself & that's the most time-consuming part. The writing portion doesn't take that much time, especially since I've always been a very strong writer. If you look back on notes written from my teachers back from when I was in school, my elementary through high school teachers all seemed to agree that my written communication was much stronger than my verbal communication. That is the way I [still] feel as well & is a very common thing among autistic people. It is also one of the reasons why I decided to give blogging a try. Up to this point, the blog that took me the longest to put together was April 12th's blog, The Harm of Autism Function Labels (the linear & circular autism spectrum graphics took a very, very, VERY long time to create!). Back The Topic Of This Blog... FAMILY: My family is my entire world 🌎— they always have been & they always will be. I mean, lots of people are family-oriented, but for me, there's a bigger reason why. I know a lot of the reason my family takes up so much of my heart & so much of my world is because I depend on my family to take on roles that friends typically take on in people's lives. As sad as it is, throughout my life, I historically could never depend on friends. From having friends in general; to making plans with them & having the plans happen when, where, & how I expected them to; to leaning on them for emotional support in times of need. This is as true now as when I was a child, so because of this, my family was always extra important to me. Growing Up In Such A Family-Oriented Town... Without Family
I've lived in Shrewsbury, Massachusetts ever since I was 2½ years old. This town, & New England in general, is incredibly family-oriented. I love the strong family values that New Englanders have. Many people I grew up with had all their grandparents, aunts, uncles, cousins, etc. living less than an hour's drive from them. Many people I know who are in my parents' generation grew up in Shrewsbury themselves & also attended the Shrewsbury public schools, some having the same teachers my brother & I had growing up. Growing up in a town where so many people were surrounded by their extended family, but I didn't have that was really hard on me, & it still is. I wanted more than anything to not have to get on an airplane to see my grandpa & my aunts. Now, my grandpa lives just five minutes down the road from me, but it's because he needs my mom & I to be taking care of him. So, I can't depend on him now like I could when he was healthy. My aunts living so far away from me is really, really hard on me though; especially since I've seen how loving & supportive they have been with all that I have been going through this past year. My Aunts Are Amazing People! I have learned so much about myself & about the world that I am now a part of over the past several months. Both of my aunts are people who have been wanting to learn & wanting to be more educated about autism-related issues that I wasn't aware were effecting my life in such big ways until recently. Having the love & support of motherly figures who are not my mom has been incredible & very much needed, especially since I've been feeling like at home, it is wished that I was neurotypical, & I often feel that I do not belong, always [unintentionally] saying or doing the wrong thing. With my aunts, I can just be myself. If they have a question about something I'm doing or saying, they'll ask me about it with love in their hearts, & we can have an open & honest conversation about it without judgement being an issue. Being able to have in-person conversations with both my aunts this month & last month has been absolutely amazing. While I know that they're both there for me always, sometimes the type of love that I need can just not be achieved over text or through conversations on the phone, but is only possible in person. My aunts are doing everything right & are treating me exactly the right way without being told what to do or say, which feels so, SO good. If you have family close-by to you, please cherish them. I so wish I had what you have! And to my aunts: thank you for being so amazing 💕! Today is April 23rd, my younger brother's birthday! Thinking back, to when I was a little girl, there were two memories that could've been my first childhood memory. The only reason I don't know which one was my first memory is because they both happened the same year, at around the same time of year. One of those memories was visiting my mom & my baby brother in the hospital right after he was born & the other was visiting the house I grew up in before it was ready to be lived in. What does my brother's birthday have to do with autism?
Growing up, April 23rd was the day I disliked most & I feel really terrible admitting that, or typing that out. Now, I'm trying to come across in the best way possible because I love my brother & his birthday is definitely a day to celebrate. When we were kids, our grandparents would always come visit from New York & Pennsylvania for our birthdays too & that was always a really special treat. I would give anything for a visit from my grandparents, something I didn't get nearly enough of. The reason why I disliked April 23rd so much was because of one simple reason: having to say the words, "Happy Birthday!" to my brother when I got up in the morning. I had so much anxiety over that that it caused me to dislike that day so much. In fact, I even remember there being birthdays in the past where I didn't wish him a happy birthday at all & then I got in A LOT of trouble for it. I'll tell you this: I wanted more than anything to wish my brother a happy birthday, but I just couldn't. Like, no matter how hard I tried, I couldn't get the words to come out. At all. It was horrible because it made me feel & look like a terrible older sister & person, but having to initiate conversation first in the morning, even something as simple as wishing him a happy birthday, was an incredibly uncomfortable thing for me to do. When it was my parents' birthdays, I had no trouble wishing them a happy birthday, but when it came to my brother, it was SO dang hard & I didn't know why. Until now. There were multiple reasons why this was, but I think the main reason was the fact that he was close to me in age. It had always been very difficult for me to relate to & to converse with people who were my age. The other reason was the fact that he was just so different from me. He was so loud & rambunctious as a child that it was extremely intimidating, so the idea of needing to be the one to initiate conversation was absolutely terrifying. Even as we grew up & he became less that way, what I remembered was what he was like as a little boy, so I wasn't able to change the way I felt or reacted when April 23rd came around. Once he went off to college & then after college, when he entered the workforce, April 23rd was a much easier day for me because I didn't see him first thing in the morning, so could either text him or say, "Happy Birthday!" at the same time my parents did. Saying "Happy Birthday!" at the same time as other people wasn't an issue. It was saying it individually that was a problem for me. Now when I think back, it makes me so sad, the number of things I got in trouble for when I was a little girl & even when I was older, because we didn't know I was autistic at the time. This is just an example of one of those things. No, it really doesn't. At least not in my view. That was just a fun play on words I thought of for today's topic. One of the things that is common among autistic people is their tendency for having a lot of rules & rituals that control their lives. For me personally, I don't have a lot of those, except in two very specific areas of my life. One of those areas is my dogs, which brings us to yesterday evening's frustration. Yesterday evening, my mom told me that she bought my dogs a new box of dog biscuits. Any neurotypical person would be thankful to have a mom who did that for them & I would've, as well, if she had bought the right type of treats. Now, I know how ridiculous this sounds, especially to any neurotypical dog parent who is reading this. But, & I'm not kidding; I am only one in my family who can buy dog food & treats correctly. There are very specific things I look for when purchasing dog food & treats. These Are My Rules For Purchasing Dog Food & Treats:
I don't allow my dogs to eat any dog food or treat that doesn't fit follow ALL FOUR of those rules. Clearly, my dogs eat better than I do. The particular type of dog biscuits my mom purchased didn't fit into three out of four of those rules. I know being this particular & getting this upset over a box of dog treats might seem ridiculous. But, I have done SO much dog food & treat research over the years that my dogs eating biscuits in the box that my mom bought would've been torturous for me. Feeling this way is absolutely not ridiculous for an autistic person. The next part of this situation that was upsetting was that I had to go exchange the box of dog biscuits RIGHT THEN. At six o'clock in the evening. After I thought I was home for the rest of the night. After I was already in that shopping plaza three hours earlier & needed to go the the shopping plaza again the next day, to visit a cat sitting client. Or my dogs would have to be fed those biscuits that I didn't want them to eat because there were no dog biscuits in the house & no one told me. I am extremely conservative with gas & drive with efficiency. So, driving to the same shopping plaza multiple times in the same day when I had to go to that plaza again the next day anyway made no sense to me. I tried to make sense with my mom, but couldn't. Yes, I still live with my parents. (Thanks, Autism.) So, off I went to PetSmart to exchange a box of dog biscuits. I picked out something that fit all of my qualifications, paid the $1.06 difference & drove home. When I got home, my mom happily asked me what I dog biscuits I picked out, so I showed her. This whole situation put me in a bad mood for the whole rest of the night & I am still frustrated about the tiny amount of unnecessary extra gas I had to use yesterday evening. The reason why? Anger rumination. A term I had never heard of until I knew I was autistic. It is something that a lot of other autistic people also struggle with.
What Is Anger Rumination?: Anger rumination is the tendency to dwell on upsetting & frustrating experiences that happened in the past. Why Am I Telling You This?: No, I am not telling you about this to vent about my evening yesterday. I am telling you about this because this is what it's like to be an autistic woman. I hope this helped you get a little glimpse into my life, the life of an autistic woman. I had a blog topic planned for today, but due to a phone call I received yesterday afternoon, I'm straying from it & blogging about something totally different (which is difficult for autistic people to do) instead. So, let's talk about autism resources! When you get an autism diagnosis, the next step is typically... you guessed it... resources! The resources that come after the diagnosis are SO overwhelming! Or, at least that's how it was for me. I decided to post about this instead of my planned topic because my vocational rehabilitation counselor called me yesterday afternoon to check in. There were multiple resources I applied for once I had my diagnosis. One of the resources I applied for was vocational rehabilitation services. What Is Vocational Rehabilitation?: Vocational rehabilitation is a process that helps people with lifelong & acquired disabilities find, get, & keep meaningful employment. All states have vocational rehabilitation services, but they might be called different things depending on the state. Now you know why this is so overwhelming for me. I have mentioned multiple times throughout this blog that anything & everything relating to employment causes intense amounts of stress & anxiety for me. The last time I had seen or spoken to my vocational rehabilitation counselor was back on Thursday, February 9, 2023; when I had my initial in-person meeting with him. That was roughly two months ago. During that meeting, I explained some of my anxieties involving employment & also showed him what I had done so far with my Splashed With Water website. Back in February, this website looked nothing like it looks now because it was not nearly as far along as it is right now. It was also not a live (or published) site at the time.
During today's conversation with my vocational rehabilitation counselor, I shared with him the link to this website, which he took a peek at while speaking with me. From what my autistic self could tell, he seemed quite impressed & asked if he could share it with the rest of the office. Of course, I gave him permission to do that. I also told him to be sure to let me know if any of his colleagues had any thoughts or feedback regarding my site. He then asked me what I actually wanted him, as my vocational rehabilitation counselor, to help me with. What I actually wanted to outcome of the vocational rehabilitation services to be. To be completely honest with you, that was a difficult question for me to answer. What I told him was that I think the traditional, corporate-style job is the safest choice & the choice that everyone who loves & cares about me wants me to make. However, I personally feel that that is not the best choice for me personally due to the fact that I think it could very likely be detrimental to my mental & physical health & wellbeing. I told him that what I think the healthiest thing for me to do is to focus on this website & make this new business work for me. Was that the right answer? I don't know, but I'm trying to figure it out. What I can tell you though is I really hope this business works for me. I can feel the burning passion inside of me as I type this blog post out. 🔥 Multiple times throughout this blog, I have referenced the three levels of autism, but what exactly do the levels of autism mean? And what's the difference between them? Let's get into that right now. Each person who received an autism diagnosis after May 2013 (when the DSM-5 was published) was diagnosed with level 1, level 2, or level 3 autism. The difference between the levels is simply the level of support that a person needs in his or her daily life, with level 1 autistics needing the least amount of support & the level 3 autistics needing the most amount of support. I am a level 2 autistic, so that means that I fall right in the middle. Level 1 Autism Spectrum Disorder:
Level 1 autism was formerly known as Asperger’s syndrome, high-functioning autism, or the mildest form of autism. It is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Although there isn’t just one set of characteristics that level 1 autistic children AND adults have (remember autism is a spectrum with a very wide array of characteristics), there are some traits & experiences that level 1 autistics tend to have in common:
Level 1 autistic people might also experience depression or anxiety that is the direct result of social difficulties. They also tend to get bullied or left out of social situations, which can lead to mental health issues & difficulties later in life. I personally experienced very severe bullying from early childhood all the way through college, with the worst of it being in my mid-teens & beyond. I will get more into this in a future blog post. Level 2 Autism Spectrum Disorder: Level 2 autism is where I fall on the autism spectrum. This level is in the middle of the spectrum & usually requires substantial support for independent & successful daily living. Level 2 autistics tend to experience all of the level 1 characteristics, but to a greater degree. They also might have more noticeable stimming behaviors (sometimes called restricted or repetitive behaviors). Stimming isn't something to get rid of unless it causes harm to the autistic person or to the people around them. Hair pulling, biting, slapping, & banging the head against something are all examples of harmful or dangerous stims that should be gotten rid of or exchanged for another stim that isn't harmful or dangerous. Level 3 Autism Spectrum Disorder: Level 3 autism was formerly known as low-functioning autism or severe autism. However, it is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Level 3 autistics require very substantial support for daily living. This means that they would benefit from more assistance & more accommodations at home, at school, at work, in the community, in relationships, etc. in order to live as independently & as successfully as possible. Level 3 autistic people may also need a lot more supervision, even in adolescence & adulthood than level 1 & level 2 autistic people do. Level 3 autistic children AND adults tend to experience all of the level 1 & level 2 characteristics, but to a much greater degree. Some other common characteristics of level 3 autistics are:
Final Thoughts: The levels of autism are the medical community's way to help clarify the needs & abilities of autistic individuals. It is also important to remember that individuals across all areas of the autism spectrum have amazingly unique strengths & abilities that neurotypicals often do not have. We need to remember to recognize & support these strengths & abilities as well. Regardless if someone is a level 1, a level 2, or a level 3 autistic person, all autistic people experience this world very differently from each other. We all may struggle with daily living, but in very different ways. |
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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