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:
0 Comments
Internalized ableism is something that most, if not all, disabled, chronically ill, & neurodivergent people have experienced. But, first of all... What IS Ableism? Ableism is the discrimination of & the social prejudice against people with disabilities based on the belief that "typical abilities" are superior. Examples Of Ableist Comments About Autism & Autistic People:
Sadly, several of the above comments are said to me on a consistent basis. A few of them many, many years before I even knew I was autistic. And I have no choice but to take it. Hearing those things hurts. It really, really hurts. Examples Of Ableist Quotes By Temple Grandin, The "Face" Of Autism:
Now that we know what ableism is...
What IS Internalized Ableism? Internalized ableism is when people with disabilities absorb & believe the negative stereotypes & prejudices society holds about them. Examples Of Internalized Ableism For Autistic People:
ALL except for three of the above statements are true for me, in my experience of growing up autistic, & BEING AUTISTIC. This is one reason why it is so important to be kind & to not use ableist language. Your words really, truly matter. A LOT. Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people. One of the last things I learned about when I became aware that I am, in fact, autistic, are the problems autistic people have with self-care. Now, I can tell you that in some ways, being as germaphobic as I am is a real blessing because that is why many of these self-care tasks actually get completed. If I wasn't so finicky about cleanliness, being a hygienic person would be much more of a problem for me. All my adult life, I have had to complete self-care tasks in a certain way in order for them to get done at all, or in order for them to get done in a timely manner, depending on what the task is. I know that if you are an allistic, or a non-autistic person, you are probably wondering what exactly makes self-care so difficult. This is why.
Let's take a moment now to talk about various self-care tasks.
Showering 🚿 Steps Involved:
That is over SIXTY steps (because some of these steps are actually two or three steps) that need to be completed in order to take a shower every night. Doing that EVERY single NIGHT is EXHAUSTING. I take a shower immediately after dinner every single night in order to ensure that my shower is completed in a timely fashion. If I didn't do that autistic inertia would get in my way. I don't use a hair dryer, so I like to shower several hours before going to bed. I don't use a hair dryer because:
The other night, my mom came knocking on the door after I had already taken my clothes off because she had taken her glasses off & couldn't remember where she put them. And she couldn't see to find them. She wanted ME to find them for her of course. I told her I couldn't because I had already taken my clothes off in preparation for my shower. Putting my clothes back on after I had taken them off just wasn't possible due to my executive functioning difficulties & autistic inertia. Asking a neurotypical person to do this might annoy her or him, but for an autistic person like myself, putting my clothes back on after I had taken them off would make it so my shower take many more hours to get completed. And following the routine of getting my shower done by a certain time is EXTREMELY important to me. If I wasn't so germaphobic, my shower might not get done at all with such an interruption, but I have certain rules that I follow. They are:
If my dad hadn't been home & able to find my mom's glasses for her, I know this would've turned into an ugly fight. The entire mindset of not being able to put clothes back on after taking them off is a foreign concept for neurotypical people & is one of the many things that make living in a neurotypical world so stressful & so frustrating. Especially when those people just tell me I'm strange & they don't take the time to understand the way I live or WHY I do the things I do. By the way, my mom's glasses ended up being in her bathrobe pocket, a location I would've NEVER looked in, even if I HAD tried to find them. Childhood Difficulties: Growing up, my dad continued to wash my hair in the kitchen sink until a very old age because I just couldn't tolerate doing it on my own. My mom told the neuropsychiatrist who evaluated me for autism that washing my hair when I was a child was incredibly difficult because I would scream if even one droplet of water made it into my eye. Eventually, my parents forced me to wash my own hair in the shower & that was so, so, SO HARD. And it caused so many fights & so many meltdowns. Putting my head under the shower water felt no different than as if someone was pouring rubbing alcohol over my head. And then it seeped under my eyelashes & into my eyes despite the fact my eyes were squeezed shut. No joke. As time went on, I came up with the coping mechanism of using a face cloth to shield my face from the water & that is something I still use to this day. This is why I decided to call my blog Splashed With Water. I talk more about it in my first blog post, if you would like to go back & read it. Rather than boring you, by giving you the step-by-step breakdown of the rest of the self-care tasks, I'll just talk briefly about the following: Dressing 👚 I have to get dressed the second I wake up because with autistic inertia, it will get to be two o'clock in the afternoon & I'll STILL be in my pajamas. Brushing Teeth 🪥 Until I was in middle school or high school, I used a children's strawberry-flavored toothpaste. My mom forced me to change to a normal "adult" toothpaste at some point around the teenage years. Because it's what normal people use. Until I got more used to it, the minty flavor made it feel like my mouth was literally on fire. 🔥 And I just had to live with it. When I was talking about this during my autism evaluation, my evaluating neuropsychiatrist asked me why I couldn't use a non-mint flavored toothpaste. My response? My mom told me I had to use mint because that's what EVERYONE uses, that's what "normal" people use. I always felt like I was abnormal & needed to force myself to be "normal" in order to be accepted. And my efforts didn't work because I STILL wasn't accepted. I still can't use mouthwash, even though my dentist recommends it because the mint is too strong & it burns my mouth. Mint is a flavor that autistic people tend to be way oversensitive to. Now it all makes sense to me, but my mom still makes fun of me because I adamantly dislike mint-flavored anything, including ice cream & chocolate. How could someone dislike certain flavors of ice cream & chocolate? 🤷🏻♀️ Using The Toilet 🚽 Due to autistic inertia & executive functioning difficulties, I have great difficulty getting up to use the toilet if I'm not already in the standing position, so if I happen to be in the standing position, I literally act like it's a bathroom emergency when it isn't because I know that if I didn't do that, I'm not going to use the bathroom until I take a shower that night, many hours later. I know how ridiculous that sounds, but it's absolutely true. When I was a child, I wouldn't flush the toilet after using it because I was completely terrified of the sound it made. I also wouldn't use the bathroom if my mom happened to be doing laundry at that time. The spontaneous & LOUD sound that the washer & dryer made would scare the living daylights out of me! 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. 💙 Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
Happy Halloween! Well, maybe it's a Happy Halloween to you, but it's not for me. I've never liked this haunting holiday. So, there. I've come out & said it. I don't like Halloween! Now, having said that, if you're a Halloween-loving person, that's no biggie. In fact, one of my closest friends has a Halloween birthday & I just love her excitement around this frightful day. But, for me, Halloween just isn't my day. And that's okay, too. This Is Why:
I don't dislike everything about Halloween, so this is what I do like about the holiday:
Halloween Challenges For Autistic People:
How You Can Help:
Today is a big day for me because it marks my one year anniversary of my autism evaluation & me getting the validation I waited precisely four months & four days for (I can't believe it!), so in celebration of that, here are some things I've learned about myself over the past year, four months, & four days:
Looking Back On Six Months Of Blog Posts!
April's Blog Topics:
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. 💙 A couple days ago, my case worker called me regarding my disability application. This is the first time I ever heard from him since applying for disability benefits back in early December. In fact, before this week, I didn't even know I had a case worker! Unfortunately, the call ended with me feeling incredibly flustered. Despite the fact that my case worker & I were both speaking English & we are both native English speakers, I felt as though we were speaking two entirely different languages. This is quite a common occurrence for me, & for other autistic people, as well. Communication is so, so difficult when you're autistic. In fact, all my adult life, I've had my dad sit with me when I make phone calls about my personal needs. And it's not just because of the severe phone anxiety I experience. It's because I literally cannot communicate with people about the numerous issues I deal with everyday unless they are part of my very, very tiny inner circle. Especially when I'm on the phone. When I first received my autism diagnosis, I expected to have a much, MUCH easier time conveying my needs to & working with various resource people. I mean, now I have a name for my struggles, plus these people are used to working with people with disabilities, right? I was SO wrong here! I have found that it has been almost impossible to get my points across to anyone unless their background is specifically in autism AND they have a certain personality type. Without that exact combination, people are almost impossible to work with.
For instance, back in December, I had an extremely heated argument with the resource person at the autism center where I went for my autism spectrum disorder evaluation & diagnosis. I expected that this conversation would give me hope, but instead, it left me feeling more defeated & alone than ever before. I could go on & on about my conversation with her. I would think that not only working in an autism center, but having an autistic adult child at home would make her be able to speak to an autistic woman with respect & dignity. Much of what she said was completely uncalled for & inappropriate. Despite the fact that I consider myself a very patient person & easy to get along with, I can tell you that the only reason I didn't completely lose my cool with her is because I was walking my dog, Teddy at the time she called me back & I wasn't alone in my bedroom. I needed to control my emotions in order to not make a complete fool out of myself in public. That's how bad it was. The same exact thing happened during a phone call with my vocational rehabilitation counselor this past June, but I can give him more benefit of the doubt because he certainly knows a lot less about autism than the autism resource woman. Lastly, during my phone conversation with my case worker a couple days ago, he put so much more weight on my autistic comorbidities than on autism itself. I can tell you that while I likely would still struggle with mental health challenges without being autistic, being autistic is what makes my mental health challenges so disabling that it affects my ability to work. Autism is what's important here, not the plethora of other difficulties I have. Yes, I put down other diagnoses too because you can't forget that they do exist. But, that's not what's important here. People focus on the mental health aspect of things because that's what they know more about. They also think that if you take medication & go to therapy, you can be fixed. And if your issues can be fixed, then there's no need for disability benefits, right? That would save Social Security a lot of money. My case worker was very surprised that I don't see a therapist right now & it has been a very long time since I've seen one. I don't see a therapist is because I feel like it was a total waste of time & money. I'll get more into the details of therapy on another day. My experience in therapy is more than a blog post worth of info. Anyway, the conversation I had with my case worker scared me because how is he supposed to help me if we keep talking in circles & I can't get him to understand any of my points? This is not okay. I am posting about this to show you just how frustrating being autistic can be. I am SO beyond exhausted that no matter how hard I try, I can't get anyone to understand me or to respect my thoughts & feelings. I applied for disability this past December, shortly after I received my autism diagnosis. Now, the disability process is a very lengthy one. It typically takes just under a year for a decision to be made. Ever since I first applied, I have periodically been checking the status of my application via the Social Security Administration website. And I can now see that we're getting closer & closer to my application being fully processed, which brings me to what this post is about. My neighbor's son is just a few years younger than me & is also autistic. Knowing that my neighbor likely has a much greater understanding of my struggles than most people, I have gone to her for advice a few times. My mom & I had a very interesting conversation with her a couple evenings ago. Something I've never thought of until now was brought up, which I'd like to tell you about. My neighbor's advice to my mom & me was that when we're talking to people or filling out paperwork related to autism services or benefits (like disability or supplemental income), we have to remember to put the emphasis on what I CAN'T do rather than what I CAN do. She told us that she has a difficult time talking about what her autistic son CAN'T do & instinctively puts the emphasis on what he CAN do. Both my mom & I were very confused by this statement. My mom even asked my neighbor to clarify what she meant. When my neighbor kept going on & on about this, I realized that she probably had no idea that this wasn't a problem at all for me, so I interrupted her. I told her that I have the exact opposite problem. I have a difficult time talking about what I CAN do & always put the emphasis on what I CAN'T do. "Oh, so you have the opposite problem," my neighbor said in agreement. When I took a moment to pause & reflect on this conversation, I came to a realization. The difference in perspective between me & my neighbor is simply when the autism diagnosis was received. Her son was diagnosed with autism as a young child, while I was diagnosed with autism well into adulthood.
While I'm not a mother myself, I can imagine that as a mother, my neighbor wants to think positively for her son. Her positivity will then positively impact her son by making him feel loved & capable of doing whatever he wants to do with his life. For me, my autism diagnosis came from such a negative place. In fact, I believe that I wouldn't have received a diagnosis at all at this point in my life if I was someone who put the emphasis on what I CAN do. After I received my autism diagnosis, I've found myself constantly telling autism resource people about everything I CAN'T do. But, I can't remember telling anyone about what I CAN do. Sometimes, it has even led to heated, ugly arguments that have left me feeling more misunderstood, invalidated, & defeated than ever before. For example, I:
While yes, this is an extremely negative way of thinking, it is important to remember that if I didn't have such a long list of things I CAN'T do, I wouldn't be autistic. And I wouldn't have spent my entire life struggling & wondering why I am unable to get to where I want to be in life. It may not look like it from the outside, but autism is an invisible disability that really hinders what things I am capable of doing & how much of it can be done in a day. Ever since I was a child, I've had very specific limits, which include interacting with people, physical activity, & more. I've always known that surpassing those limits would cause trouble, but identifying those limits & advocating for myself wasn’t something I learned to do until I was in my upper teens. Living life in a constant spoon deficit is no easy feat, but I'm taking it day by day & trying my very best. I'd like to end this post by reiterating that while many people impacted by autism focus on what they or their loved one CAN do, it’s the CAN'Ts that are important to me. Every person is different, autistic or allistic, & we all have different perspectives on our abilities & on the life we're living. And that is perfectly normal & okay. We're all doing our very best & we're doing what works for us & that’s what matters most of all. 💙 And This Is The Story: The Week Of August 28th: One morning, my mom was coming home from walking one of our dogs when she heard scuttling coming from underneath the hood of my car. Thinking there must be an animal in there, she asked my dad to investigate. When my dad opened the hood of my car, there was a chipmunk inside. He yelled at it & scared it away. 🐿️ Sunday, September 3rd: My brother, who was home last weekend for my birthday, was waiting to take a walk with my mom & one of our dogs when he heard scuttling coming from underneath the hood of my car. Knowing that there was a chipmunk in there just a few days prior, he told our mom about it. She gave him my car keys & asked him to get rid of it. When he opened up the hood, there were at least four chipmunks in there. This time, the chipmunks were staring at him, seemingly unafraid & unwilling to move. My brother, afraid of the chipmunks, grabbed a broomstick from the garage to try to get them to leave. They scurried out. My dad also put some mothballs inside a little KFC takeout container which he put inside there to deter chipmunks from making the hood of my car their home in the future. 🐿️ 🐿️ 🐿️ 🐿️ Tuesday, September 5th: A couple days later, I was driving to & from my dog walking clients' houses & thought to myself, "There is a really strange smell in the car." Not confident enough in my ability to recognize the unpleasant smell of mothballs, that night, I asked my dad if the smell of the mothballs he put in the hood of the car could possibly effect the smell of the interior of the car. He replied that that is certainly a possibility & one that he thought of, too. Wednesday, September 6th: The next day, my dad told me that he investigated the smell inside my car & it's definitely not mothballs. He smelt the hood of the car & it doesn't smell. The interior of the car did smell though, so he asked me if I spilt anything inside the car, even if it was water. I told him that I definitely didn't spill anything in the car. The only thing I ever regularly consume in the car is water & it's always in a very tightly sealed water bottle that I'm sure didn't spill. I said to him, "I wonder if Mom drove the car & spilt something in it without telling us." That was the only thing I could think of because I know my mom has a tendency to spill things in cars. Then, I went on to say that it was a very strange coincidence that a couple of days after we found chipmunks in the hood of my car, the interior of the car smells. My dad agreed. I was pretty certain that the smell had to do with chipmunks & not with a spill. Friday, September 8th:
It was a super hot & humid day & I was driving to & from my dog clients' houses again. Between walking my own dog & walking my clients' dogs, I was super hot & sweaty. So, I put the car's air conditioner on maximum strength. I then started to notice the unpleasant smell in my car getting significantly worse. A thought went through my head: What if that smell isn't mothballs & there's actually a dead chipmunk lying next to the vents in the hood of my car?! NO, NO, NO! That better not be the case! That better not be! Well, I totally forgot to mention this to my dad by the time I got home. The reason why? The largest rainstorm I've ever driven in happened that afternoon on my drive home. Super stressful drive. It came on so suddenly & without any warning. One moment it was cloudy & the next, it was like I was driving through the middle of a hurricane. There was so much rain that I thought the water was gonna swallow up my car with me inside of it. I could barely see & I didn't think it was safe to pull over either because I didn't think anyone would see me if I did. Saturday, September 9th: The next morning, when I was about to take my dog for his walk, I noticed that the hood of my car was open. So, I asked my dad if he was still investigating the smell. Not surprisingly, he pointed to the backside of my vents & said, "There's a dead chipmunk in there, but I can't see it. I tried looking with the flashlight on my phone & can't see it, but I know it's in there." I KNEW IT. I asked him what we're gonna do about it. Do I have to drive around with a dead chipmunk inside the hood of my car for the rest of the time I drive that car? And most importantly, how are we gonna get the smell to go away? His response? We're not gonna do anything about it because if we can't see it, we can't get rid of it. It will stop smelling. Eventually. The most surprising thing he said though? The chipmunk was probably sick & dying & went in there because it was a nice, quiet place for it to die alone. Yeah, right. 🤦🏻♀️ When I told my mom about my chipmunk situation, she Googled what to do about a dead chipmunk inside the hood of your car. I mean, what else should the queen of Google do? An article she came across said that it can take many months for the smell to go away on its own & it suggested purchasing something called a dead mouse deodorizer. We purchased that from Amazon. 🐿️ Sunday, September 10th: The next afternoon, I had to drive to the next town over to meet my new cat sitting client. I had just barely left home when the world's most horrible smell came over me. I had walked my dog just before this, so yes, the A/C was on. And due to the humidity, it was on maximum. I quickly opened both back windows & put them as far down as possible. I seriously thought I was gonna vomit. The smell was a gazillion times worse than it had ever been before. I was so glad it hadn't started raining yet or I don't know what I would've done. I probably would've died. Or come close to it. By the way, my dad's story changed. Now, he told me that my brother only saw three out of the four chipmunks scurry away last weekend. One of them disappeared. That makes a lot more sense. A chipmunk did not in fact choose its dying place to be behind the vents inside the hood of my car. So, that means one of two things likely happened:
Sensory Sensitivities: Now, let me take a moment to tell you about the open windows in my car, as I mentioned above ↑. I can't tolerate open windows in a car, in a bus, in a ferry, in anything that is moving pretty much. Blowing air, breezes, wind, etc. They all bother me SO much. Convertibles, open air jeeps, etc.? Forget it! That's why I opened my back windows & not my front windows. You know when kids are little & they sit in front of a fan, going, "Ahhhhhhhhhh..." because they love how the fan changes the sound of their voices? I never did that because that would require me to sit in front of a fan. Sitting in front of a fan meant air blowing in my face. Nope, nope, & nooooope! I even had trouble in college with fans. The dorms when I was an underclassman were not air conditioned, so we depended on fans to keep the room cool in the warmer months. That was a problem for someone like me who is intolerant of fans. Also, I have all the vents in my car turned away from the driver's seat so that no air will blow on me while I'm driving. During times where I'm really hot, I have turned them back towards me briefly, just until I cool down before turning them away again. In fact, one time when my dad drove my car, he wondered why he was so hot & then he realized that the reason why was because all of the vents were turned away from the driver's seat! 💨 Monday, September 11th: Last night, a very close friend of mine took me out to dinner for my birthday. Just what I needed. I texted her the evening before to ask her if she could pick me up. I had no clients yesterday, so if I didn't have to drive to dinner, I wouldn't have to drive at all that day. Breathing in that horrible, vomit-inducing stench right before sitting down to dinner? I'd rather not. I mean, there's no good time for that, but right before a meal is an especially bad time for that. Tuesday, September 12th: I had three clients I needed to drive to today & I could barely smell the stench in my car. Could the stench have not been there at all & I'm just imagining it? Quite possibly. I'm still not convinced that this is the end though. There were days that the smell wasn't as bad & then it got bad again. I guess we'll just have to wait & see. Many autistic people have sensitivities to smell. Luckily, I am not one of them. But, being that I am so sensitive to blowing air, my sensory sensitivities did play a factor into how I am surviving this chipmunk situation. And that, everyone, is my story about autism & chipmunks. 🐿️ Some time ago, my parents' financial guy had made an offer to assist my brother & I if we ever wanted it. My mom took me to see him today because for awhile now, I've had concerns about having too much money in the bank. The reason why? I'm in my thirties now & I have barely spent any money ever since I started earning it when I was a teenager. In simpler terms, I'm really, really, really good at saving money. This Is Why I'm Such A Money Saver: I cannot depend on myself to make money. I became very aware when I was looking for my first "real" job after college that no one wanted to hire me. I don't blame them because if I was someone who was in the hiring position, I wouldn't want to hire myself either, as sad as that is to admit. I really, really, REALLY struggled with this. I was raised in an Asian & a Jewish household. I believe that those two backgrounds expect more from their children than any other background does. I even struggled emotionally that I went to a lowly state school rather than a college that was more highly respected. How many high school seniors get into every single one of the colleges they apply to? 🙋🏻♀️ I didn't have any reach schools & I didn't take any AP classes in high school because I wouldn't have been able to handle the pressure of either one of those things. Ever since I graduated from college ten years ago, I have had an intense amount of pressure put on me by my family & by myself to achieve things that were just not attainable. That really ate away at my self-esteem. My self-esteem wasn't good before this, but this made it a whole lot worse. For many years, my parents would say to me, "Aren't you scared about what's gonna happen to you when we die? Don't you want to make a living?" And for years, I avoided answering that question because I had no answer that would be acceptable to them, no answer that would be acceptable to me. The truth was, I was petrified & I still am. But, until I received my autism diagnosis last year, I had no understanding about why I was never able to reach the types of goals I went to college to achieve, why I am a college-educated person who can't support myself. It was EXTRAORDINARILY frustrating. College & Financial Independence: Achieving financial independence is what everyone strives for & it is a big reason why many high school graduates go on to college, isn't it? Well, let me tell you this. A college education doesn't buy you financial independence. It just doesn't. What a college education buys you is simply that: a college education. Yes, many jobs require a college degree & having a college degree can get you a higher salary than you would've had without one, but having a college degree doesn't get you a job. That was one of the first lessons I learned when my college commencement was upon me. I was an art & graphic design major, so my mom suggested that I call several design firms in the Boston area to see if they were hiring. Trying to be a good daughter, I unhappily obliged. I've always had problems talking to people & making phone calls to people I don't know personally causes anxiety on such a high level that I can't put it into words. None of the design firms I called were hiring, which surprisingly gave me great relief. This was something I never expected, but I knew it was because of the feelings of panic I endured when I thought about life after college. My college experience was absolutely terrible, so the whole four years I was there, I kept thinking that things would get better once I graduated. Well, they didn't. I believe that in general, companies want to hire people who:
I Wasn't Made For The Corporate World!:
Both corporate environments & supervisors, whether I'm interviewing or working at a job, cause me to freeze, become nonverbal, get tongue-tied, panic, act in unexpected ways, & a plethora of other things that give a bad impression. Whenever I try to explain this to people, they just don't get it. Most people work because they have to, not because they want to & they do what they have to do to make a living. But, if all of those things have always happened to me when I'm either interviewing for a job or working for a supervisor, how is that going to work? Job Interview Experiences: I have been told so many times to just practice, practice, practice. But, I believe that in this instance, practice isn't going to help. There's no reasoning with anxiety & until I have reached a specific required comfort level with the person who is interviewing me (something that both takes a very, very long time & isn't possible), everything I've hypothetically practiced will just go out the window at the time I need it most. Plus, that's not even taking into consideration that if I don't actually want the job, I'm not going to be able to convince someone else that I want the job. Now, if you're thinking, "How could you not want the job?!" Wanting the job & wanting money are two totally different things. I have never interviewed for a job that I wanted because every job that I've ever interviewed for was a job that I believed I was better off without. Experiences In The Workforce: I strongly believe that I have never been a good employee, so that in turn makes me not a good employee. I know now that much of this has to do with being an unawarely autistic employee. I have been told the following things from various supervisors:
What I Need In A Job: If I'm not able to be in control of when, how, where, for who, & with who I'm working all of the time, it's not going to work for me. I know that chances are, unless you're self-employed, you don't control all of those things. For an autistic person, not having control of all or at least the most important of those things all the time will cause autistic burnout. This is why many autistic people:
Autistic Burnout Is: The complete physical & mental exhaustion that autistic people experience from trying to live in a neurotypical world &/or from masking their autistic traits too often. This is often a problem for autistic people in the workplace & is often why they often don't have enough sick time or their job performance might be lower than it should be. 💔💔 This is the heartbreaking reality for many autistic people out there & this is why we need more support. 💔💔 My dogs are a breed that requires grooming because they have hair that grows rather than fur that sheds. They typically go to the grooming salon every eight to twelve weeks. Now, those of you who don't have dogs might not be aware of this, but most grooming salons keep dogs in crates for hours until it is his or her turn to get groomed. Because of this, dogs are typically at the salon all day long. I think this is COMPLETELY UNACCEPTABLE. I've brought my ten-year-old dog, Teddy to the same grooming salon ever since he was a tiny puppy, so that's how my expectations of dog groomers were set. This particular groomer took dogs by appointment only & Teddy never took longer than an hour to be finished. Once I had two dogs, they took an hour & a half to be finished. Last year, this groomer who was located about thirty minutes away from us ended up relocating to a town that was another thirty minutes away from us. She later had to close down completely due to medical reasons. My Journey Finding A New Grooming Salon: This was no fun task, particularly for an undiagnosed autistic woman like myself who dislikes change & is extraordinarily picky when it comes to her dogs' care. Seriously, NO ONE can do it right. This is also why I rarely travel. I don't trust anyone to take care of my dogs. Grooming Salon #1: We tried this salon a little over a year & seven months ago when our groomer had COVID & our normal salon suggested we give them a call. They also suggested that we stay with them if we like them, but my response was, "No way, we like you too much!" We didn't know our groomer was planning to relocate at this point, but now them making this suggestion makes a lot of sense. The groomer there barely cut their hair even though I gave her a reference photo, so Teddy & Ollie walked out looking almost exactly the way they looked when they walked in. This salon typically keeps dogs there for way longer than I'm comfortable with, but because they knew we had anxious dogs & both my mom & I were stressed over it, they told us that they would get them done as quickly as possible, which they did. It only took two hours. I knew they couldn't do that if we were regular clients, so this salon wasn't an option. Grooming Salon #2: One of my dog sitting clients takes her dogs to this salon & it is run by appointment, like I am used to. I brought my dogs here a few times & while they looked super duper cute after their cuts, there were several things about this salon that made me a little uneasy:
Grooming Salon #3: This salon was a salon that I had preconceived notions about because I know a lot of people who bring their dogs here. I absolutely DID NOT want my dogs to get groomed at this salon because of how uncomfortable it made me. The reason I was so uncomfortable was because one of my neighbors told me that their dog took four & a half hours here. My neighbor's dog is only slightly larger than my boys, so how long it takes to groom her should be comparable. ⭐️⭐️ Once an autistic person has preconceived notions about something, it is absolutely impossible to change her or his mind! Many neurotypical people think this is stubbornness, but I can tell you it is not stubbornness. This is in fact autism at its finest & it makes me just as uncomfortable as it makes you. ⭐️⭐️ I'll never forget the day that my mom called me to tell me that she thinks we should bring the boys here for grooming. She was trying to convince me that this salon was just perfect. It was clean, well-decorated, & obviously very well taken care of. The woman she talked to was nice, friendly, & helpful. I was not convinced, but not only that, I was furiously mad. Remember, you can't change an autistic person's mind once (s)he has preconceived notions about something (see above↑)! My mom told me I should stop by to see it for myself because she was impressed. So, I stopped by on my way to my client's house who lives just down the street from this salon. Stopping by solidified my negative feelings about this salon. When I got there, it was super hectic, which didn't give me a good first impression. Hectic environments are always a turnoff for me (that's my autism speaking again). But, here's what really made me upset:
My Experience Taking My Dogs To Grooming Salon #3:
My experience taking my dogs to this salon was just horrible. I felt like I was the only one who felt this way though because almost everyone else I know who uses them just LOVES them. I'm used to this though & that's another autistic trait— my opinion often differs from everyone else's. I used to look forward to Teddy & Ollie having grooming appointments. They both looked so dapper afterwards! But, now I dreaded grooming days. I usually had knots in my stomach that started anywhere from a week before the appointment to a day before the appointment. I knew my dogs were crated here, which really bothered me. I know that small dogs like mine are safer in a crate, but what I wanted in a grooming salon was for it to be safe for my dogs to not be crated. Plus, I needed predictability & I never knew how long they were going to take. Predictably is very important to autistic people & unpredictability drives us crazy. I couldn't handle the unpredictability of bringing my dogs here. Also, I am so attached to my dogs that if I'm home & my dogs aren’t, I am very distraught. So, I needed a distraction the entire time my dogs were there. That wasn’t possible. I based my tip on how long my dogs took. If they took two hours or less, I gave a 20% tip & if they took any longer than that I gave a lower tip. Since I've always paid for both dogs, my mom has told me how much to tip. We've brought them here several times & they only took less than two hours once. That was the only time I gave the tip my mom suggested. I was always in such a bad mood on grooming days that it caused me to get into these really bad arguments with my mom & I would snap over the most minuscule of things. Thinking back, I think there wasn't a single time my dogs got groomed at this salon where this didn’t happen. I knew I couldn’t continue bringing my dogs here. It just wasn’t good for me, or for anyone. But, it was important to me that both dogs got groomed together & because of that, I had no other choice. I HATED it. This is a very good example of how I feel so unheard & like my opinion & my feelings don't matter. The fact that I downright HATED this salon didn't matter to my mom & that hurt. Finding Grooming Salon #4 😇: My mom called me one morning a little less than a week ago & said to me, "I found a grooming salon you'll LOVE! I know what you like & you'll love both the salon & the groomer here." Unlike the time she called me to tell me about Grooming Salon #3, the vibe I got from her that morning was completely different. I totally trusted my mom this time, so there was absolutely no convincing needed. But, she wanted to bring me & the pups to this salon to see it & to meet the groomer. This salon was perfect. I LOVEd the groomer, too. She also listened to us when we told her that the easiest way to tell our dogs apart is by their tails. The salon was clean & well taken care of. The groomer had her Cavalier with her that day, but also had a Bichon at home that she takes with her sometimes, too. We let Teddy & Ollie run around in the grooming area & they both looked happy. They were probably super confused as to why they were at a grooming salon & left without a haircut though. They both hate getting groomed! Our First Appointment At Grooming Salon #4: We went to visit the salon this past Wednesday & we booked an appointment for this morning, the following Tuesday. We also cancelled yesterday’s appointment we had scheduled for our dogs at Grooming Salon #3. I was beyond excited for that. The groomer brought her Bichon with her today because she remembered that I made a comment last week about how our dogs love other small, white dogs. She also knew which dog was Teddy & which one was Ollie immediately, so she remembered how to tell them apart by their tails. I gave her a reference photo of a haircut they had at our original groomer & they both came out looking super duper cute. Their hair wasn't cut short enough, but it usually isn't on a first visit to a new salon. That can be easily fixed though. How long did it take us to find this salon? Slightly less than a year & seven months. I'm hopeful that we'll continue to be happy here. Did almost no salon fit my needs because I'm autistic? I don't know, but I think that's quite possibly the case. That's also why I told you all this. To show you how being autistic can complicate someone's life & to show you just how frustrating & aggravating it can be. You may have heard of it, or maybe you haven't, but let's talk about what Spoon Theory is & how it applies to autistics. If you've ever heard someone exclaim, "I'm out of spoons!"; you might've been super confused. And no, (s)he didn't run out of silverware. It was Spoon Theory that (s)he was referring to. Spoonies, as we call ourselves, are people living with chronic illnesses, autism, mental health issues, terminal illnesses, disabilities, & more who use this theory to give their healthy family & friends a glimpse of what it's like to be in our shoes. What Exactly Is Spoon Theory?: Now, it's important to remember that I did not create Spoon Theory & I'm no Spoon Theory expert. I'm simply an autistic woman living with persistent, lifelong mental health issues who has benefited greatly from having a simple & concise way to explain my energy & ability levels on any given day. The Origin Of Spoon Theory: First, I highly encourage you to read the entire origin story of Spoon Theory, but here is Spoon Theory in a nutshell: Spoon Theory was originally created by Christine Miserandino, a woman with lupus. She & her best friend were at a diner late one night when her friend asked her what it was like to live with lupus. And that's when Spoon Theory was born. Christine handed her friend a collection of spoons as a concrete way to illustrate what it was like to live a day with lupus. "I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted." Every chronically ill, autistic, mentally ill, terminally ill, & disabled person begins each day with a limited number of spoons. The number of spoons most spoonies begin the day with is twelve because that's how many spoons Christine handed her friend that night. And every task that you do throughout the day takes up one or more of your spoons. How many spoons each task takes up depends on how difficult the task is for you to do. Depending on the person & his or her illness or disability, certain activities may allow spoons to be replenished. I'll talk more about that later on in this blog post. Remember that an activity such as getting ready for work has to be broken down into smaller steps. Getting ready for & getting to work usually contain all or most of the following steps for most people:
Once a spoonie runs out of spoons, (s)he has no energy left for the rest of the day, so we have to make choices about how we're going to use our precious spoons. For example, are you going to shower or eat breakfast today? If you go to the grocery store after work today, will you have enough spoons left to cook? Healthy people have the luxury of not needing to make these choices because they wake up each day with an infinite number of spoons. While the Spoon Theory was originated by a woman with lupus, it applies to so many other illnesses & disabilities out there as well. How Does Spoon Theory Apply To Autistics?: Autistic people wake up each day with a limited number of spoons. Let's continue to use the number twelve. Sometimes the number of spoons we wake up with can be lower than what is typical. For example, if we had a meltdown yesterday or if we didn't sleep well, we might hypothetically start the day with eight spoons, no spoons, or a negative number of spoons rather than the typical twelve. We have to plan our days very carefully in order to conserve our spoons. We face unique struggles because we live in a world that wasn't built for us. Navigating a neurotypical world uses up our spoons at an astronomical rate. The tasks that I find to take up the most amount of spoons tend to involve interaction with people. Also, because of my vestibular sensitivities, I live my life in fear of germs & illness, so tasks that involve cleaning or being in close contact with people I don't know also take up a lot of spoons. The below image outlines how many spoons I use up for many of the typical tasks in my daily life (although some tasks are hypothetical). As you can see from the below image, many of us, myself included, consistently run on a spoon deficit. It would be impossible for me to only use twelve spoons in a day. I try to conserve my spoons as much as I can, but so many daily tasks take up such a significant number of spoons that spoon conservation is impossible. This is why autistic burnout & meltdowns are so common in the autism community. We are quite simply out of spoons. Most days, I wake up feeling like I am out of spoons before I'm even out of bed because the limited number of spoons I am given each day just isn't enough. When you've run out of spoons every single day of your life, it really takes a toll on you. Because I am consistently spoon-deficient, I try to avoid the majority of tasks that take up five & six spoons. The only task in this group of tasks that I passionately love doing is taking care of my grandfather. Autistic people do not handle stress well & because caregiving is very stressful, it takes up a lot of spoons. However, it also can be very rewarding & it gives me precious time with my grandfather, which I love. Spoon Replenishment: While I am consistently running on a spoon deficit, I feel lucky that sometimes, my spoons can be replenished. This isn't the case with all spoonies. The below image outlines how I personally experience spoon replenishment. Certain activities are much more effective at accomplishing this than other activities. Sleep is something that helps replenish spoons for many spoonies, but that isn't something that helps me. I have many other things that replenish my spoons though, which I am grateful for. Because my spoons are used up much more quickly than they are replenished, this only helps my spoon deficit ever so slightly. Why Does Spoon Theory Help?: I love Spoon Theory because it gives our community a common language that explains our daily energy levels in a simple way. It also helps our healthy & neurotypical family & friends understand what their ill or disabled family & friends are facing in a concrete way. Sometimes, it may look to others that we are lazy when that isn't the case at all. We are simply out of spoons. Without this language & understanding, many of us would be using more of our precious energy than we had left explaining to our family & friends that we are all out of energy. (How ironic is that?!) If you’re new to Spoon Theory, I hope that this explanation helps you to see the struggles that us spoonies face on a daily basis in a new way. And if you know me on a personal level, I hope this helps you understand me better, too. 💙 I got my hair cut this morning. While I just LOVE the end result of a haircut, I don't like the process of having it done. This Is Why:
Why Many Autistic Individuals HATE Having Their Hair Cut:
My mom & I took one of my dogs to my favorite Block Island beach today. This day was my ideal day. My perfect day. Sitting on the beach on a perfectly sunny, blue-sky day with my mom & my dog. My favorite alcoholic drink was in my hand. I could feel the warmth from the sun on my skin. This is summer. So, we try to get to this beach every year. The only thing that made it less than perfect was the traffic we were stuck in on our way there that made us nervous about missing the ferry. And my dog trying to scare the seagulls away. I mean, I don't like seagulls either (a seagull stole a hot dog right out of my hand many, MANY years ago), but trying to ignore them wasn't a possibility for my little Teddy. Going To The Beach Wasn't Easy When I Was Growing Up:
Walking on sand caused me to get motion sickness to the point where I actually had a lot of anxiety leading up to beach trips. I've always been intensely afraid of feeling dizzy. Still am. And walking on sand caused dizziness. Sometimes, it caused dizziness that was so bad, I couldn't stand up straight or I felt like I might fall over or collapse. The feeling of my feet sinking into the sand was never something I could tolerate. I was a hard surfaces only type of girl. This was a problem for me when I was a young child, but also when I was a teenager. Especially when I was a child, my family tended to go to the beach with other families. Mainly families of my younger brother's friends because sadly, I didn't have friends. Picture trying to keep up with boisterous young boys when you're trying to combat dizziness & everything that comes along with it. Luckily, the feeling subsided fairly quickly once we found our spot to set up on the beach. However, since my mom liked to scope out the BEST spot for us to set up, it sometimes required partially setting up somewhere & then moving to somewhere else, which was SO hard on me. I've always felt like due to my difficulties with motion, dizziness, & other sensory sensitivities, I unintentionally put a damper on my family's fun. Because of this, I'm pretty sure I never vocalized this fear to my parents. It would've caused even more anxiety, fear, & discomfort. I am so glad this is in the past & this is no longer something I need to deal with. I'm the type of person who could never live in the states in the center of this country because they don't have easy ocean access. I love the ocean too much! 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. I have to begin this post by saying that I am so lucky, being someone who has felt so loved & so supported, particularly by my family & close friends, throughout the entirety of my autism diagnosis journey & beyond. I know that many, many people who receive diagnoses as adults, or even as children, are not as lucky as I am & are forced to find their footing in this neurotypical world on their own. Going off of that, a couple of days ago, my best friend texted me an article about the rise of neurodiversity at work. Interestingly, several weeks before, my cousin had emailed me a different article on the same topic, that was included in her work's most recent newsletter. Both articles were very similar, making very similar points about employers being more accepting of autistic & neurodiverse employees now, more than ever. The articles even made statements regarding how in certain aspects, neurodiverse employees add more value to a company than neurotypical employees do. However, when I read articles like these, what I'm seeing is that while we're definitely in a much better place now than we were before, significant changes still need to be made in the workplace & beyond. I had an interesting conversation via text with my best friend I'd like to share with you & that's what today's topic is about. Let's Step Away From The Technology, Mathematical, & Science Industries For A Moment: When you think autism, you generally think Dr. Sheldon Cooper in The Big Bang Theory or Dr. Shaun Murphy in The Good Doctor. I mean, this autistic stereotype is clearly illustrated within their characters, after all. Both articles that were sent to me mentioned this stereotype. My view on this is that articles written about this add to our already existent stereotype, rather than combatting it, which is what we really need. For example, the article my cousin sent me stated that, "Employers have begun to realize that individuals with autism are assets to the company, especially in the engineering and technology industry, where skills such as attention to detail, extended focusing, and mathematical concepts are in demand." On the other hand, the article that my best friend sent me mentioned that some industries, like tech & finance are moving faster than others when in comes to neuroinclusion. While I think that's great, what I'm more interested in are the other industries. Personally, I am someone who would not thrive in any of the stereotypical autistic industries. While I thrived in algebra & statistics while I was in school, I am not a technical- or a mathematical-oriented person. To be totally honest, I inputted numbers into formulas to get the answers because my teacher or professor told me to, but I never understood why I was doing that. And I was never required to remember the formulas I learned because having notecards for tests was an accommodation I had in both high school & college. Autistic people can also be extremely creative, be talented writers, & be great with animals. I can tell you that this is where my personal talents lie. Several industries autistic people tend to thrive in are journalism, animal science, pet grooming, animal care, filmmaking, videography, animation, photography, & graphic design. In elementary school & middle school, I spent my free time writing poetry. In high school & college, graphic design was my hobby. Even though I didn't write poetry as often when I was older, I often still used it to express my feelings. We don't hear about the link between these particular industries & autism often... or at all. What I'm interested in is how THESE industries & other industries outside of the technology, mathematical, & science fields are embracing autistic people & becoming more inclusive. Where These Autistic Stereotypes Came From:
I believe that these autistic stereotypes were created because there are so many undiagnosed autistic females. The technology, mathematical, & science industries are all male-dominated fields. So, of course if undiagnosed autistic females work in other fields, people are unaware of autism's presence outside of the tech bubble! A great illustration of this occurred shortly after I had a conversation with my physician about the fact that I am likely autistic. In my quest to learn more about autism & about myself, I purchased the book, I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults. When I finished reading it, I gave it to my dad to read. After my dad read the autistic traits section of that book, he told me he knows many people who are like the type of person Cynthia Kim is describing. My dad was an engineer for over twenty-five years, so I'm sure that many of his former colleagues are autistic. Engineering is one of the fields that fits that autistic stereotype. Also, after everything I have learned about autism over the past year, I believe that my dad is autistic himself. Where This Leads Us: While it's great that more & more organizations are willing to talk about & accept autism & neurodiversity, there clearly is significant work that still needs to be done. It is time for all industries to be more inclusive & welcoming; but I am most interested in what the industries outside of the technology, mathematical, & science fields are doing to achieve this. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
All
Archives
May 2024
|