It is no secret that autistic police brutality is a real problem. From beatings & violent, wrongful arrests to deadly shootings; the aggressive force police use against us, autistics, is our unfortunate reality. In fact, I DON'T FEEL LIKE POLICE OFFICERS PROTECT ME at all, but to be quite honest, it is the exact opposite— I FEEL LIKE I HAVE TO PROTECT MYSELF FROM POLICE OFFICERS. When I look at police officers, I see the grownup versions of my high school bullies. I knew for a fact that the majority of the guys who bullied me in school, the guys who made my high school, my middle school experiences a living hell were going onto college to study criminal justice to become police officers. It does make sense. The tough guys in school. The guys who bullied the quiet, meek girls like myself. They have the exact right type of personalities, the desire & the thrill deep inside of them to want to catch the bad guys. Of course they want to become cops! I have been absolutely petrified, absolutely terrified of police officers my entire life & that is the main reason why. In my mind, POLICE OFFICERS ARE BULLIES, people who misunderstand me, people who mistreat me, people who don't treat me like a human being. And no one, no situation has ever proven me wrong. Interacting with police officers causes me so much stress that my autistic traits become much more exasperated, much more visible than they are typically. But, even with how exaggerated my autistic traits become, I still don't "look autistic" in a stereotypical sense. I spent the majority of my life not knowing I was autistic, but despite that, I still knew that my interactions with police officers were dangerous. While I never act in ways that are considered "typical," that is exaggerated exponentially when I'm faced with high-stress situations, like when I'm in the presence of law enforcement personnel. And when police officers see someone not acting "typical," they often assume the worst & react in ways that put the life & the well-being of an autistic person, such as myself, at risk. I now know that the kind of stress police officers trigger inside of me causes autistic shutdowns. Before I knew I was autistic, I knew that I shut down when in the presence of police officers, but I had no explanation as to why that was. During an autistic shutdown, I more often than not become nonverbal, meaning, even if I wanted to talk, it would be impossible for me to make the words come out. And if I am able to talk during an autistic shutdown, I don't have control over what I am saying, my words often not making any sense. Acting in this way when conversing with police officers is extremely problematic because a person who acts like this is typically on drugs. I'm not on drugs; I never have been & I never will be. It's being autistic that makes me act this way. On top of that, it takes an extremely long time for me to process information & it takes exponentially longer when I'm highly-stressed. So, when spoken to by a police officer, I am often non-responsive. Not because I don't want to respond, but because I physically can't. I simply haven't had enough time to process whatever was just said to me OR that I was spoken to at all. Having an extremely long processing time is very common with autistics, but again, it is also very common with drug users. During the few interactions with police officers I've had in my lifetime, I have been told every time that there was something off about me, that they thought I was on drugs when they first interacted with me. It would have been SO helpful to know that I was autistic at the time I had those interactions rather than for those police officers to automatically assume that I was on drugs. The fact that it is automatically assumed that I am on drugs when I'm not is awfully troubling. This is why soon after I received my autism diagnosis, I designed myself an autism wallet card. This card explains that I am autistic, what autism spectrum disorder is, as well as certain behaviors that I may exhibit that others will likely perceive as unusual, but they are actually very typical behaviors of an autistic woman. I also wear a medical alert bracelet that contains my name, my diagnoses, & an emergency contact number. Plus, it states that I have a wallet card. I did this because I know that it isn't safe to reach for something without asking the police officer for permission first. But, since I often have trouble communicating verbally with police officers, I needed something that would allow me to safely communicate that I'm autistic & I have a wallet card without needing to speak. The reason why I have an autism wallet card & wear a medical alert bracelet is to protect myself from police officers, something that shouldn't be my job or my responsibility to do. Not only is a police officer's job to protect us, but I shouldn't have to disclose my disability in order to be treated with respect or to keep myself safe. My autism wallet card is pictured below (click on it to view it larger). Now, police officers aren't purposely harming autistic people. They simply aren't educated about how to recognize autism & the different behaviors autistic people exhibit. For example, when police officers see a person:
Autism Training & Education:
Police officers across the country & around the world are just not being properly educated or trained on how to treat & interact with autistic individuals. In fact, the type of & the amount of autism training that police officers receive is variable in different police departments in cities across the country. Plus, it's usually voluntary, not mandatory. Another problem is that the education police officers receive on autism tends to be tacked onto the end of the training on another topic. When this happens & only a short discussion is had about autism, how are police officers supposed to get the training, we, autistic people so desperately need them to have? On another note, it's hard to even pinpoint what constitutes as effective training. There is very limited research on how well various kinds of training programs work & ineffective training does more harm than good. There is also some research that suggests that while proper autism training makes police officers understand autism, it still doesn't make them any less likely to use force on autistic people. There really needs to be police training on autism that is standardized across all departments nationwide. However, some experts & advocates say that the best way to decrease violence is to minimize interactions between police & autistic people altogether. That just doesn't seem like a viable solution to me though, especially for autistic people like me, who drive. The Blue Envelope Program: The Blue Envelope Initiative represents a collaborative effort aimed at fostering a safer & a more understanding environment for autistic drivers during motor vehicle operator interactions & traffic stops. This program was just introduced in Massachusetts, the state in which I reside, earlier this month. It involves a Blue Envelope, which is intended to hold a driver's essential documents— a license, the car's registration, & a contact card. However, the significance of this envelope isn't that it is just a storage solution. This envelope features critical communication guidelines on its exterior, specifically tailored to assist law enforcement officers in recognizing & adapting their approach when interacting with a autistic drivers. While the thought behind this program is great & it shows that Massachusetts is trying, as an autistic driver, I don't love everything about the Blue Envelope Program. This is why I have a problem with the Blue Envelope Program:
Also, ever since the Massachusetts Police Department announced the introduction of the Blue Envelope Program, I have been reading numerous comments online from allistic people about how people who require a Blue Envelope in order to have simple conversations with police officers shouldn't be allowed to get behind the wheel. These comments are extremely hurtful & extraordinarily ableist. The people who made these types of comments clearly don’t understand autism or how it impacts people. I probably will get a Blue Envelope to keep in my car only because Massachusetts police officers recognize its purpose. But, it will either remain empty or I will put a few of my autism wallet cards inside of it. I don’t love the idea of keeping my driver's license anywhere other than my wallet. When Interacting With Police Officers, Autistic People May:
Key Facts About Autism, Disabilities, & Police Officers:
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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. Throughout this blog, I have briefly mentioned how harmful ABA therapy is to autistic people, but I haven't gone into a whole lot of detail regarding what ABA therapy actually is & WHY it's such a problem. So, I'd like to take a moment right now to talk about that. Now, I'm gonna be upfront with you by telling you that I'm absolutely no ABA expert & I've had to do a lot of research in order to have enough content to write about in this blog post. What IS ABA Therapy? ABA stands for "applied behavior analysis" & simply put, it is a behavioral therapy specifically designed for autistic children. The History Of ABA Therapy: The Lovaas Method, later known as Applied Behavior Analysis, was developed by a man named Dr. Ole’ Ivar Lovaas in the 1960s. The premise was to use behaviorism to "treat" autistic individuals. ABA therapy focuses purely on behaviors with a goal to make the autistic child "indistinguishable from peers." When Dr. Ole’ Ivar Lovaas was practicing ABA therapy, he used rewards for desirable behaviors, as well as abusive punishments (including electric shock) for undesirable behaviors. The Problems With ABA Therapy:
There is SO MUCH controversy regarding ABA therapy in the autism community. While the majority of autistic individuals passionately dislike every aspect of this type of therapy & speak out against it; their parents, their teachers, & their medical professionals often disagree; calling it a miracle that "cured" their child of her or his autism or made significant improvements to their child's autism. Well, that simply isn't the case at all. And this is why.
What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
One of the last things I learned about when I became aware that I am, in fact, autistic, are the problems autistic people have with self-care. Now, I can tell you that in some ways, being as germaphobic as I am is a real blessing because that is why many of these self-care tasks actually get completed. If I wasn't so finicky about cleanliness, being a hygienic person would be much more of a problem for me. All my adult life, I have had to complete self-care tasks in a certain way in order for them to get done at all, or in order for them to get done in a timely manner, depending on what the task is. I know that if you are an allistic, or a non-autistic person, you are probably wondering what exactly makes self-care so difficult. This is why.
Let's take a moment now to talk about various self-care tasks.
Showering 🚿 Steps Involved:
That is over SIXTY steps (because some of these steps are actually two or three steps) that need to be completed in order to take a shower every night. Doing that EVERY single NIGHT is EXHAUSTING. I take a shower immediately after dinner every single night in order to ensure that my shower is completed in a timely fashion. If I didn't do that autistic inertia would get in my way. I don't use a hair dryer, so I like to shower several hours before going to bed. I don't use a hair dryer because:
The other night, my mom came knocking on the door after I had already taken my clothes off because she had taken her glasses off & couldn't remember where she put them. And she couldn't see to find them. She wanted ME to find them for her of course. I told her I couldn't because I had already taken my clothes off in preparation for my shower. Putting my clothes back on after I had taken them off just wasn't possible due to my executive functioning difficulties & autistic inertia. Asking a neurotypical person to do this might annoy her or him, but for an autistic person like myself, putting my clothes back on after I had taken them off would make it so my shower take many more hours to get completed. And following the routine of getting my shower done by a certain time is EXTREMELY important to me. If I wasn't so germaphobic, my shower might not get done at all with such an interruption, but I have certain rules that I follow. They are:
If my dad hadn't been home & able to find my mom's glasses for her, I know this would've turned into an ugly fight. The entire mindset of not being able to put clothes back on after taking them off is a foreign concept for neurotypical people & is one of the many things that make living in a neurotypical world so stressful & so frustrating. Especially when those people just tell me I'm strange & they don't take the time to understand the way I live or WHY I do the things I do. By the way, my mom's glasses ended up being in her bathrobe pocket, a location I would've NEVER looked in, even if I HAD tried to find them. Childhood Difficulties: Growing up, my dad continued to wash my hair in the kitchen sink until a very old age because I just couldn't tolerate doing it on my own. My mom told the neuropsychiatrist who evaluated me for autism that washing my hair when I was a child was incredibly difficult because I would scream if even one droplet of water made it into my eye. Eventually, my parents forced me to wash my own hair in the shower & that was so, so, SO HARD. And it caused so many fights & so many meltdowns. Putting my head under the shower water felt no different than as if someone was pouring rubbing alcohol over my head. And then it seeped under my eyelashes & into my eyes despite the fact my eyes were squeezed shut. No joke. As time went on, I came up with the coping mechanism of using a face cloth to shield my face from the water & that is something I still use to this day. This is why I decided to call my blog Splashed With Water. I talk more about it in my first blog post, if you would like to go back & read it. Rather than boring you, by giving you the step-by-step breakdown of the rest of the self-care tasks, I'll just talk briefly about the following: Dressing 👚 I have to get dressed the second I wake up because with autistic inertia, it will get to be two o'clock in the afternoon & I'll STILL be in my pajamas. Brushing Teeth 🪥 Until I was in middle school or high school, I used a children's strawberry-flavored toothpaste. My mom forced me to change to a normal "adult" toothpaste at some point around the teenage years. Because it's what normal people use. Until I got more used to it, the minty flavor made it feel like my mouth was literally on fire. 🔥 And I just had to live with it. When I was talking about this during my autism evaluation, my evaluating neuropsychiatrist asked me why I couldn't use a non-mint flavored toothpaste. My response? My mom told me I had to use mint because that's what EVERYONE uses, that's what "normal" people use. I always felt like I was abnormal & needed to force myself to be "normal" in order to be accepted. And my efforts didn't work because I STILL wasn't accepted. I still can't use mouthwash, even though my dentist recommends it because the mint is too strong & it burns my mouth. Mint is a flavor that autistic people tend to be way oversensitive to. Now it all makes sense to me, but my mom still makes fun of me because I adamantly dislike mint-flavored anything, including ice cream & chocolate. How could someone dislike certain flavors of ice cream & chocolate? 🤷🏻♀️ Using The Toilet 🚽 Due to autistic inertia & executive functioning difficulties, I have great difficulty getting up to use the toilet if I'm not already in the standing position, so if I happen to be in the standing position, I literally act like it's a bathroom emergency when it isn't because I know that if I didn't do that, I'm not going to use the bathroom until I take a shower that night, many hours later. I know how ridiculous that sounds, but it's absolutely true. When I was a child, I wouldn't flush the toilet after using it because I was completely terrified of the sound it made. I also wouldn't use the bathroom if my mom happened to be doing laundry at that time. The spontaneous & LOUD sound that the washer & dryer made would scare the living daylights out of me! WELCOME to the first Autism Acceptance Month blog post of 2024! Today, I wanted to take a few steps back & go over some autism terms & what they mean. I use many of these terms throughout my blog & I try to provide definitions as I write. It's always good to take the time to pause & review what some of these terms mean though. And there's no better time to do that than when we're kicking off Autism Acceptance Month! Important Autism Terms & Definitions:
I am typically reminded several times a week that I am autistic. What I mean by that is things are constantly happening in my life that I know wouldn't happen if I was allistic, or if I wasn't autistic. When these things happen to me, I tend to say in my head, "[This particular thing] happened because I'm autistic." & then I feel all sad & mopey on the inside. I really wish it wasn't this way because it's part of what makes being autistic feel so disabling. But, I blog about my life. And this is the type of thing I deal with every day. This my real life that I'm sharing with you, so here we go. This is the story of how purchasing a new winter coat reminded me that I am in fact, autistic. All winter long, the threads in my winter coat have been repeatedly breaking, leaving large gaping holes behind. Rather than continuously repairing the damage, I decided that it was time for a new coat. This coat is very old, anyway. The best time to purchase a winter coat is at the end of the season, when everything is on clearance, so now is the PERFECT time for a new one. The task of purchasing a new coat that I will wear almost daily for almost half the year is overwhelming to say the least, especially for an autistic person such as myself. These are the three main reasons why:
The Return Process:
This is where it gets really complicated. I purchased these two coats from Walmart's online marketplace. So, it wasn't actually Walmart who I bought the coats from, but I could return it there. I kept the deep purple coat in my car for about a week & a half, so that I wouldn't have to remember about it on the day I actually needed it. Walmart is a close drive for me, but one of my dog walking clients lives less than two miles from Walmart, so I wanted to return this coat on a day that I didn't have to go anywhere after walking this particular client's dog. It took twelve days before I had time to go to Walmart after walking this client's dog. My entire life is based around doing things in the most efficient manner, so that whatever I do outside of my home takes up the least amount of time possible. Because of my depleted energy levels, as well as my executive function difficulties, doing all my errands on a single day when I'm already in the area for another reason (such as visiting a client's dog or cat) is what works best for me. Anyway, after parking my car, I took the deep purple coat (still in the bag it was shipped in), into Walmart & found the customer service desk. The older woman who helped me was incredibly grouchy. Right away, she complained about the size of the coat (what winter coat isn't large?!) & to be completely honest, I was pretty intimidated & frightened by her. I showed her the barcode on my phone that was connected to the coat I wanted to return & she scanned it. But, I was really confused because she kept making comments about how the coat I was returning wasn't red. I never purchased or received any red coats, so I had no idea what she was talking about. I was scared of her though, so I just let her do her thing & I didn't speak up. She printed out a receipt with the coat's tracking number on it & the amount that I would be refunded. I looked the receipt over as I was walking away because I never trust that people are doing their jobs correctly. I was glad that I checked because the refund she issued me was for the incorrect amount. The coat I was returning was $5 more than the coat I was keeping. And the refund I received was for the coat that was at home! I went back to the customer service counter to ask her about it & she told me that the coat I gave her wasn't red. It was then that I realized why she had been talking about a red coat. 💡 The packing slip inside the shipping bag said that I purchased a red coat & a purple coat. Red wasn't even a color option for the coat I had purchased. I was SO confused by this! ⁉️ I had never even looked at the packing slip because I received exactly what I ordered. The woman returned the purple coat (which was at home) because the coat I gave her wasn't red. When I showed her the picture of the coat on my phone with the price I paid for it, she yelled at me & told me I should've shown her that from the very beginning. I thought I did though because I showed her the barcode, which she scanned & I would think that the barcode would tell the customer service person which coat I was returning & how much to refund. ⁉️⁉️ The only reason I didn't question the customer service woman originally was because I was intimidated & scared. I have lived my entire life having to endure pervasive mistreatment from everyone around me & I am quite certain that it has caused post-traumatic stress disorder, something that more than 40% of autistic individuals struggle with. The reason I didn't speak up was because I was simply autistic & afraid. In the end, a much kinder & younger woman (who was also working behind the customer service desk) called the seller I had purchased the coats from to get the remaining $5 refunded. Going to the store to return something is such a simple task, but being autistic turned it into such a big headache. And it was all because the person helping me wasn't kind. This is something that could've been avoided completely if the person helping me had exhibited kindness & had not been so intimidating. This is the type of thing that I deal with on a daily basis because I am living with autism. For those of you who are also autistic, I hope this story helps you feel less alone. And for those of you who are allistic, I hope this story helps illustrate how difficult it is to be an autistic woman living in a neurotypical world. 💙 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. Last night, my college bestie & I went to a comedy show at a Worcester brewery. I didn't know it beforehand, but two out three of the standup comedians were autistic. The first comedian told us that she is autistic by sharing that both her & her fiancé (who performed right after her) have a touch of the 'tism. Now, this is a phrase that many autistic people use that I just cannot stand. Since this phrase came up during the comedy show that I just attended, I thought that now would be a good time to talk about what this phrase means & why it bothers me so much. What Exactly Does "A Touch Of The 'Tism" Mean?: "A touch of the 'tism" is a slang phrase used to characterize individuals displaying autistic traits. Many autistic people use this phrase when:
While this phrase may also be used by allistic, or non-autistic people to describe others who are displaying autistic traits, this is generally less common. People may say that someone has "a touch of the 'tism" regardless of whether or not (s)he is actually autistic. Why "A Touch Of The 'Tism" Bothers Me:
This is why I am so bothered by the phrase:
While a couple things that were said last night did bother me, nights out with my bestie (last night included) are seriously THE BEST. She's one of the very few people that I can say knows about all of me & loves me for it. 💙 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:
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. 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. 💔💔 During a phone conversation with a close family member this morning, I was asked about how my life is different now that my personality has been diagnosed. I was deeply hurt that I was asked this question. But, at the same time, I felt blessed. Out of everyone I have shared this diagnosis with, there has only been one person who has given me inappropriate reactions. From what I know about people who have come out as autistic, the more common response is for the majority of people to act like it's no big deal when they originally are told this information & then they proceed to treat you differently &/or shut you out of their life completely. "How Is Your Life Different Now That Your Personality Has Been Diagnosed?": My response was that my personality was not diagnosed because autism isn't my personality. It isn't anyone's personality because autism isn't a personality. I was then asked, "Well, if it's not your personality, then what is it?" "It's a disorder or a disability," I responded. I know many autistic individuals are going to disagree with my choice of words here. Depending on his or her own experiences, many people in the autism community believe that this is not true. Some people dislike that ASD stands for autism spectrum disorder because they don't think it's a disorder. Disorders imply that something is wrong, something needs to be corrected, &/or a cure is needed. Many autistic individuals don't believe that anything is wrong or that anything needs to be corrected, so there's nothing that needs to be fixed. I talk about this more in my blog post entitled I Desperately Want A Cure For Autism, But Most Autistics Disagree: This Is Why. I think autism is a disability because it has hindered my ability to get to where I want to be in life. What I Think My Life Would've Been Like If I Wasn't Autistic:
What Autism Is & Isn't:
Autism Is:
Autism Isn't:
What Personality Is & Isn't: Personality Is:
Personality Isn't:
This afternoon, I asked a close family member of mine for relationship advice (something I rarely do), which led to a conversation where he made a statement that I just can't stand. A statement he's made multiple times before. A statement I've corrected many, many times. A statement that causes me to cringe more with each time I hear it. And yet, a statement he continues to say. Specifically, the statement he said was, "The more I learn about autism, the more I believe that everyone is on the autism spectrum." Other ways of saying this are "We’re all a little bit autistic" & "All of us are autistic to a degree." If you've been in the autism community for long enough, you've likely heard one of these statements, or a similar statement that suggests that everyone is autistic. So, going off of that, the topic of today's blog post is about what these kinds of statements really mean & why hearing these statements hurts so much. As much as it hurts to hear statements like these, these are common beliefs among allistic, or non-autistic people, so I wanted to take the time to explain where these beliefs come from & what is so wrong about them. However, before we dive in, I want to make one thing clear. If you've ever said something like, "Everyone is on the autism spectrum" before, this post isn't about telling you that you are bad or wrong. I totally understand where the belief comes from & I know that most people who say statements like these are trying to be compassionate towards the autistic person they're talking with. However, this isn't how it comes across to the autistic person. Let's Take A Moment To Explore What The World Would Likely Be Like If Everyone Really Were On The Autism Spectrum:
To really understand why everyone simply cannot be on the autism spectrum, we have to understand what the autism spectrum really is. We already discussed this in my April 3rd blog post entitled What Does It Mean To Be Autistic?, but it never hurts to review what we already know, so...
What Exactly Is The Autism Spectrum?: Autism spectrum disorder is a lifelong neurodevelopmental disability caused by differences in the wiring of the brain that cause difficulties with social communication & interaction. It also causes restricted or repetitive behaviors or interests. The key problem with stating that everyone is on the autism spectrum is the fact that autism spectrum disorder is a neurodevelopmental disability. In order to be autistic, you have to have a certain combination of autistic traits that impacts your daily life on a significant level. A Couple Important Points To Remember:
Hearing That Everyone Is On The Autism Spectrum Hurts So Much Because... It is dismissive & it minimizes our struggles. It also translates to everyone being just like us when we know that couldn't be further from the truth. Also, if everyone were autistic, how could we still be so misunderstood? Whether someone was diagnosed as a child or as an adult, (s)he has gone through a lifetime of feeling different from his or her peers. Telling us that everyone is on the autism spectrum, or any similar statement dismisses these differences & the significant difficulties that come with them. What You Should Do Or Say Instead: Offer a listening ear & a shoulder to cry on. Autistic people, myself included, often feel alone, unheard, & like their perspectives don't matter. They have more than likely had a difficult life beginning in early childhood. Help the autistic person feel less alone by truly listening & by showing him or her that you care. Truly listening & being compassionate are the best things you can do & will likely combat the loneliness that the autistic person is currently experiencing. I can't believe we've made it to the end of April already! Let's wrap up Autism Acceptance Month by talking about how you should react if someone in your life chooses to disclose an autism diagnosis to you. I was lucky that when I disclosed my struggles & my diagnosis, most people reacted correctly without any guidance, but unfortunately, that's not always the case. This is what autistic people REALLY want from you. The DO's Of Reacting To An Autism Disclosure:
The DON'T's Of Reacting To An Autism Disclosure:
What Are Autism Function Labels?: Autism function labels are used by allistic, or non-autistic people, such as parents, family members, friends, caretakers & medical professionals; to describe an autistic person's abilities. If you refer to someone as having "high-functioning" or "low-functioning" autism, for example, you are using autism function labels. What Is "High-Functioning" Autism?: "High-functioning" autism isn't an official medical diagnosis, but is a term that allistic people use when talking about autistic people. When people talk about an autistic person who is "high-functioning," they are referring to someone who despite his or her autism, is able to read, write, speak, & handle daily tasks such as eating, getting dressed, & personal hygiene independently. A "high-functioning" autistic person can also live independently. People may also call "high-functioning" autistic people mildly autistic, less autistic, or something similar. These terms essentially mean the same thing as "high-functioning" autism. "High-functioning" autism is just the term that is used the most often. What Is "Low-Functioning" Autism?: "Low-functioning" autistic people are usually unable to live independently & will require support from a parent or caretaker throughout their lives. "Low-functioning" autistic people are either nonverbal or they have much more pronounced communication impairments. People may also call "low-functioning" autistic people severely autistic, more autistic, or something similar. These terms essentially mean the same thing as "low-functioning" autism. "Low-functioning" autism is just the term that is used the most often. How Are Autism Function Labels Harmful?: Autism function labels are harmful because they cause ableism, or the discrimination of disabled people. How Autism Function Labels Harm "Low-Functioning" Autistics
How Autism Function Labels Harm "High-Functioning" Autistics
What Does the Autism Spectrum Look Like?: Many allistic people would be very surprised to learn that the autism spectrum is NOT linear & the below image is absolutely NOT what the autism spectrum looks like. The autism spectrum looks more like this ↓. More specifically, this graphic is what MY autism spectrum looks like because it illustrates my specific abilities, as well as my challenges. As noted below, the more white space a particular area of the spectrum contains, the more I struggle with that particular situation or activity & vice versa. You will not be able to find another autistic person out there who's spectrum looks exactly like this because each & every one of us is different from one another. What Terminology Should We Use Instead of High-Functioning & Low-Functioning Autism?: Instead of calling us high-functioning or low-functioning, please simply call us autistic or if you need to be more specific, refer to us an autistic person with low support or high support needs. This makes us feel less judged about who we are as people, but still lets caregivers, teachers, or employers know what to expect in terms of how much support & what type of accommodations we may require. What Is Asperger's Syndrome?: No longer an official diagnosis, Asperger's syndrome is an autism spectrum disorder where a person has normal language & cognitive abilities, but has difficulties with social interactions & repetitive patterns of behavior & interests. Aspies, as individuals diagnosed with this syndrome call themselves, may struggle with conversational skills & nonverbal communication (e.g. eye contact, facial expression, body language, etc.). They also tend to have a narrow or intense focus on particular interests. The History of Asperger's Syndrome: Dr. Hans Asperger was an Austrian pediatrician who during World War II, sent nearly eight hundred children to Spiegelgrund, a special children's clinic in Vienna where children who were mentally ill or physically disabled were incarcerated, tortured, starved, & often murdered due to being deemed inferior or worthless by the Nazis. Asperger kept four highly intelligent, but socially awkward & physically clumsy children alive because they were higher functioning. These children were deemed worthy of survival, so that they could be studied. This is also why autism function labels (e.g. high-functioning autism, low-functioning autism, mild autism, severe autism, less autistic, more autistic, etc.) are harmful & should no longer be used. I will get more into autism function labeling in a future blog post. The term Asperger's syndrome was not coined by Asperger himself, however, but was coined by British psychiatrist Lorna Wing in 1981. It was added to the DSM-IV in 1994. "The Geek Syndrome":
In 2001, Asperger's syndrome gained some notoriety due to an article in Wired magazine entitled "The Geek Syndrome," where it was described as the "milder cousin" of autism. The article describes people with Asperger's as being quirky, creative, anxious, & socially challenged. The Retirement Of Asperger's Syndrome: The term "Asperger's Syndrome" was retired in May 2013 when the American Psychiatric Association (APA) published the 5th edition of the Diagnostic & Statistical Manual of Mental Disorders (DSM-5). Now, Asperger's syndrome is no longer a diagnosis, but is known as autism spectrum disorder, level 1. This is the lowest out of the three levels of autism spectrum disorder. Even so, lots of people still use the term Asperger's. Reasons For Reclassification:
Personal Thoughts: During my autism diagnosis journey, as I began learning more & more about autism spectrum disorder, one of the things that quickly came to light was that Asperger's syndrome is no longer a term that is used. When I learned the reasoning behind this & the history behind the syndrome, I was horrified, deeply disturbed, & sick to my stomach. I was raised in a culturally & religiously-blended household, celebrating both Christian & [some] Jewish holidays, growing up. Due to having a partial Jewish background & having family members who do still practice the religion, the history behind Asperger's syndrome affects me on a deeply personal level. In fact, my parents & I don't purchase German car or appliance brands due to the Holocaust! If I were ever in a situation where someone told me that they were an Aspie, it would take some serious tongue-biting for me to not tell them that they aren't!
Identity first language is often preferred in the autistic community, but personal choice needs to be respected as well. Personally, I am someone who uses both identity first & person first language, but in this blog, I'm intentionally trying to only use person first language if I'm talking about myself & using identity first language when I'm talking about the autistic community as a whole.
What Is "Light It Up Blue"?: "Light It Up Blue" is a campaign to promote autism awareness. People are encouraged to wear blue clothing & to post on social media using the hashtag #LightItUpBlue to raise awareness. Additionally; landmarks around the world; such as Niagara Falls, the United Nations, the Empire State Building, the White House, & state government buildings; glow blue in support of the cause. This all sounds great, right? Not so much. Why We Shouldn't "Light It Up Blue" This April:
When you think of autism, chances are, colorful puzzle pieces come to mind. However, there is great controversy among the autism community regarding the use of puzzle pieces in relation to autism. Many autistic people, myself included, dislike using puzzle pieces to symbolize autism. In fact, I even educated my mom on this very important issue just a few days ago. When I was talking with her about my plans for Splashed With Water, she asked me if I was going to be creating designs with puzzle pieces. She was surprised to learn that I wasn't & that is one of the things that is going to make my business unique. Because many autistic people don't like what the puzzle piece symbolizes, I wanted to create a place where autistic people would be able to shop for autism acceptance items that align with their beliefs. (With the exception of one puzzle piece design, which shines light on the fact that we are people, not puzzles that need to be solved.) My mom works in an elementary school where people wear puzzle pieces during the month of April in support of those in the autism community, so she was confused about why puzzle pieces would be worn at her school when so many autistic people dislike its use. One of the reasons I wanted to create this blog & boutique is to solve issues like this, by sharing how one autistic woman thinks & feels. The History of The Autism Puzzle Piece:
The Meanings of The New Autism Symbols:
You've probably heard of Autism Speaks before. After all, they're the leading autism "advocacy" organization in this country. There have been weeks where I haven't been able to turn on the tv or the radio in the car without seeing or hearing an Autism Speaks advertisement. People with kind & loving hearts run marathons to raise money for, donate to, & organize fundraisers for the popular organization without knowing the truth behind them. Autistic people do not support Autism Speaks, I certainly don't support them, & you shouldn't either. Shortly after I "came out" as autistic, I received an email from a member of my family letting me know that she was going to make a contribution to the organization. Luckily, she had not yet made the donation, so I was able to point her in the direction of other autism advocacy organizations that are much more deserving of her support & money. (See below↓.) Why Not To Support Autism Speaks:
Great Autistic-Led Organizations That Deserve Our Support Include:
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AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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