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. What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
I'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. 💙 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. 💙 September 2nd, as well as the several days following it have been hard days for me ever since I can remember. The reason why? My birthday is over. It feels weird & inappropriate typing that out because what thirty-something-year-old still loves her birthday as much as she loved it when she was a child? 🙋🏻♀️ That would be me. This Is The Main Reason Why: My life is so isolating. Most of the time, I feel like I'm a fly on the wall. The whole world is going by & I'm just sitting there watching from a distance. I blame autism for my isolation. I have vivid memories of my maternal grandfather, my Gung-Gung, saying to me when I was a preteen & a teenager, "You're so pretty. If you would just talk more, you would have so many friends," & then giving me a squeeze. I don't remember what my response to him was, but I knew that while I completely agreed with him, doing that wasn't possible. I couldn't talk more. In fact, whenever I did talk, it caused panic & anxiety because I felt like I couldn't say the right things & I had a tendency to stumble over my words. Also, if I was ever wrong about something, I felt like my whole world came crashing down & I wanted to hide under a rock & never come out. This is probably also why my dad has told me multiple times that I'm always right. I only speak when I'm 1,000% certain that I'm right. This is why I never, ever, ever, ever raised my hand in class when I was in school. And those are also the reasons why I had such a hard time making friends as a child. When I had friends over when I was growing up, I got a sense of relief when they went home because I could finally relax & I would no longer have to be so tense over keeping a conversation going. Now I know that the reason for these struggles was that I was unknowingly autistic. Throughout my entire life, I have always either had just one friend or no friends at all. Sometimes, there was a group of friends that I was a part of, but whenever that was the case, I was always on the outside, never really fitting in & only truly being friends with one girl in the group. If they were gonna leave someone out, it would always be me. My ability to make friends hasn't changed since. My birthday is the one day out of the whole entire year where everything is about me. It's the one day a year where I feel like people remember that I exist. I hear from people I haven't heard from in 365 days, since my last birthday. Once my birthday is over, once September 2nd arrives, all of that stops & I go back to being a fly on the wall & feeling like no one remembers I exist. I wish I could feel like people loved & cared about me on days other than September 1st. My birthday celebration with my family is tomorrow, so luckily, the celebrating isn't over just yet. The Birthday Blues:
Believe it or not, the birthday blues or birthday depression is a pretty common experience. It is not a diagnosable mental health condition, but many people experience sadness in the days leading up to their birthdays. People experience it for many reasons, including but not limited to fears about aging & dying, not having people to celebrate with, having expectations that are not met, having experienced a traumatic birthday in the past, & not being in the place in life where they think they should be. For me, I don't experience these feelings in the days leading up to my birthday, which is the definition of the birthday blues. It is the days following my birthday that are the issue. Besides the issue that I described above, every year, there is at least one person who forgets my birthday who should have remembered. I also have experienced sadness the past several years around the issue of not being in the place in life I think I should be. I now know that this due to unknowingly being autistic, so now that I know this about myself, I can take the steps that are necessary to move forward in my life. Autistic Birthday Experiences: Autistic people experience birthdays a lot differently than allistic, or non-autistic people do, so before ending this blog post, let's talk about how I experience my birthdays now & how I experienced them as a child. Being The Center Of Attention: I've never liked this. This is why I was always glad that my birthday was at the very beginning of the school year, before they started announcing birthdays over the intercom. I need to get to a certain level of comfort with someone before I'm comfortable being wished a happy birthday by that person, so I'm not someone who likes everyone knowing when my birthday is. This is also why I stopped having birthday parties at such a young age & wanted to have weekends away with my family instead. I never liked the amount of attention I got at birthday parties, especially because I was never confident that my reaction or facial expression were gonna be appropriate in every situation (& to be honest, they probably weren't). Singing Happy Birthday: I never knew what my face should be doing at this part of a birthday party. Does my face look okay? Is now an okay time to smile, should I have a straight face, or a totally different expression I haven't thought of? And who should I make eye contact with? I never knew & everyone was looking at me, the birthday girl, so now wasn't the time to screw this up! Opening Gifts: I never liked surprises because I never knew if I was reacting to them appropriately. In fact, I remember saying to my mom once, "Don't you ever throw me a surprise party!" And she never has. When I said that to her, I didn't think she ever would, but I just wanted to make sure. With gifts, if I knew what it was ahead of time, I could try to prepare myself. I've always had this fear of not being able to hide when I didn't like the gift I just opened, but I also had a fear of looking like I didn't like something when I really loved it. I've often had a hard time matching my facial expressions to the way I really feel. I went on a date today with a man I believe is autistic. We met on a dating app. He doesn't know that I think he's autistic & I haven't yet told him about my autism either. After matching on the dating app, we spent several weeks messaging back & forth & had a conversation on video chat before meeting in person. Unlike other women my age, I started experimenting with online dating when I was just nineteen years old. I mean,...
Video Chatting With My Date: My video chat with my date was slightly less than two weeks ago. A couple hours before the time we had picked to chat, I was freaking out, confided in my dad about it, & asked him what he thinks I should do. At this point, I was pretty certain this man was autistic. From his occupation to what he spends his free time doing to taking things I say or ask way too literally to admitting that social activities are downright exhausting. It seemed like every new thing I was learning about him was an autistic trait. I can't help but wonder, if I had matched with this man prior to learning that I am autistic myself, would I still have been able to pick up on these things so easily? I have learned SO much about autism over the past year. Anyway, this is the interesting part. I'm trying to word this carefully because I know other autistic people are stumbling their way onto this blog. But, the reason I was freaking out over this video chat was because this is an autistic man. Would he be too autistic for me? Too strange or weird? Yes, I am an autistic woman, but interactions with other autistic individuals actually make me shut down. I've always been this way. Ever since I first learned that I'm autistic, I have been immersing myself into autistic literature & have been reading books, memoirs, & blog posts written by autistic women, mainly women who were diagnosed later in life. Each woman has her own story, but there is one thing that all of these women have in common: they all enjoy spending time with autistic people & most of them have a group of autistic friends. I am the exact opposite of these women. Every autistic trait or quirk I exhibit is something I dislike about myself SO strongly that I don't want my friends or my significant other to exhibit those traits or quirks either. While it gave me comfort to know that getting rejected for my quirks probably wouldn't happen if I dated an autistic guy, this is why it was also so frightening. I really enjoyed messaging back & forth with him for the past week, but now it was time for me to find out: was he too much like me? And if he was, the idea of breaking that to him was really scary. I've been rejected my whole life & I know how much it hurts. So, this is what happened. We video chatted for almost an hour & a half & I still liked him. Not only that, but he reminded me of one of my cousins who is such a nice, sweet guy. If I ended up with someone like my cousin, that would be totally fine with me! Our First Date:
This is the second first date I have been on since learning that I'm autistic. It was to a mini golf & ice cream place, a location that was comfortable for me, since I am still taking COVID precautions & feel uncomfortable being in close contact with someone who I don't know really well. He texted me that he was there when I was just a couple minutes away. When I got there, I saw him sitting on the steps of the ice cream shack. He was wearing a plain tee & corduroy long pants. My first thought was that he must be sweltering because it's in the 90's. Corduroy is something I would only wear in the cooler months. I was wearing a lacy spaghetti strap top & jean shorts, so in my opinion, the two of us looked like we belonged in two very different climates. He got up & shook my hand when he saw me, but I wished he gave me a hug instead. I'm a hugger, not a handshaker. The mini golf portion of the date was great! We chatted as we made our way along the golf course. The woman who we paid for a game of mini golf offered us a score card, which we didn't take because neither of us are competitive. He understood me in ways that no one else did. Mainly things having to do with not having a desire to have social interaction be a part of my life. I guess that's one positive thing about dating another autistic individual. After we finished our game of mini golf, we got some ice cream from the ice cream shack. I got English toffee soft serve. I always get flavored soft serve if I can because so few places offer that. He got an orange soda float. He was gonna stand in the corner, near the window where we picked up our ice cream to eat, but I suggested we get a table & sit down instead. Much more comfortable & way less awkward. Once we sat down, he wouldn't stop talking. Not only that, the conversation was going in a direction that just didn't interest me. He was telling me about courses he took in college & was asking me about mine. I just didn't care to listen or to talk about that & it went on for HOURS. I graduated from college ten years ago & strongly disliked the majority of my experience that I've tried to put it out of my brain. We'll talk more about that on another day though. I felt so far removed from what he was asking me that I just didn't remember the answers to most of his questions. I'm only a year or two older than him, so we were in college at the same time. Other topics of conversation came up in the middle. My dogs for example & the fact that I used to have bunnies before them. But, those topics of conversation were very short-lived & we kept going back to the same unenjoyable conversation topic. After meeting him in person, I was certain he was autistic, but he also reminded me less of my cousin than he did previously. In fact, this date was more than two hours longer than I wanted it to be because I just couldn't figure out a way out or how to get him to stop talking! Do I think he's the right person for me? No, I don't, because if I did, I don't think I would've wanted this date to end so badly. This is one of my experiences dating as an autistic woman. Dating as an autistic individual is very, very difficult &... This Is Why:
Let me clarify something first. I am trying to be cognizant of using only identity first language throughout this blog, particularly in post titles. However, I had to call myself a caregiver with autism in the title of this (& my previous) post because if I called myself an autistic caregiver, that could mean that I am a caregiver of an autistic person, which I am not. Using person first language & calling myself a caregiver with autism was the only way I could think of to ensure that my words would be interpreted correctly. Now that I know I'm autistic & I have received my diagnosis, I have a much deeper understanding of myself, of my strengths, & of my weaknesses, all which are related to being autistic. However, my abilities when it comes to caregiving haven't changed at all. Caregiving is HARD work. I had my first go at it back in the fall of 2019, when I stayed with my grandpa, who I call Gung-Gung, & was his primary caregiver for three weeks. There have been a lot of changes in my family's dynamics since the fall of 2019. Sadly, my grandma's cancer returned two more times within two years. My grandparents had been on a waiting list for an apartment in a continuum of care facility here in Shrewsbury, MA; for several years. There was an opening for the exact type of apartment that my grandma, who I called Haw-Bu, wanted, in the fall of 2020. We took that apartment knowing that my Gung-Gung was going to outlive my Haw-Bu. What was best for him was for him to live somewhere where he could live independently & where he could have frequent time with family, after her passing. We moved my grandparents in, in the winter of 2021. They lived in that apartment together for only a few short weeks before my Haw-Bu's health declined drastically. She then had to be moved to the hospital & eventually to the nursing home in the same continuum of care facility where my Gung-Gung lived. Sadly, my Haw-Bu lost her battle with cancer in the spring of 2021. My Haw-Bu wanted my Gung-Gung to live the rest of his life here in Shrewsbury, MA for a plethora of reasons, & I know that one of those reasons was me. She knew that I wanted to take an active role in taking care of my Gung-Gung who I love so much. I wanted my Gung-Gung to live close to me for my entire life & I was so excited that it was finally happening. I only wished it had happened much, MUCH sooner. I was also happy that I could care for him without leaving home & without leaving my two dogs. Let's talk about the strengths & weaknesses of autism & how they affect my caregiving responsibilities: Autistic Strengths: I Am Loyal, Compassionate, & Caring. When I care about someone, I care with my whole heart, with every fiber of my being. Having struggled socially my entire life, there are only a few people I feel this way about & my Gung-Gung is one of those people. I know that outsiders can clearly see the love I have for him because they have told me so. Love, loyalty, & compassion come naturally for me when I care for my Gung-Gung because I've had such a strong relationship with him ever since I was a little girl. That's what made care so deeply. Those things aren’t things I could ever learn & they only come naturally for me with certain people. As I mentioned in my autism & grief blog post, once I began learning more about how autism presents itself in girls & in women, I learned that people can be a special interest & my Gung-Gung is one of mine. Because my Gung-Gung is one of my special interests, his presence & his mere existence in the world, & in my life takes precedence over everything else. Because of this, I would do anything for him, that is within reason, of course. That is the definition of loyalty. I Am Persistent (when I really, REALLY want something). I am persistent, but my Gung-Gung is also. Because of that & because of the damage the stroke did to my Gung-Gung's brain, it can be hard to win with him. My Gung-Gung still thinks he knows better than everyone else. However, I keep trying & sometimes, much to my surprise, he listens to me. Because I care so much about him, I'll never stop trying until he listens. Since my Gung-Gung listens to his doctors better than he listens to my mom & me, we ask his doctors to tell him to do the things we want him to do, but he gets angry when we suggest it. For example, walking more. I attend my Gung-Gung's podiatrist appointments to communicate with his podiatrist on his behalf, due to him having a language disorder known as global aphasia. You can read more about that in my autism & grief blog post. During one of my Gung-Gung's podiatrist appointments, I brought up walking AGAIN & asked his podiatrist if he could tell him he needs to take walks everyday. I translated what the podiatrist was saying in a way my Gung-Gung could understand & surprisingly, he was receptive. So, I texted that to my mom. I suggested reiterating what his podiatrist told him when she visited my Gung-Gung that afternoon. By the time my mom visited my Gung-Gung that afternoon, he unfortunately was no longer receptive. This brings us to my next point: being literal. I Am Literal. My mom suggested that tomorrow, I go over to my Gung-Gung's to ask him how he was doing with his walking, so I did. This conversation was one of the most depressing conversations I've ever had. Not only was he not happy with me OR receptive for suggesting he do something he didn't want to do, but he was telling me over & over that he's so old & the love of his life isn't alive anymore. So, what's the point? I took the stance that walking more would make his life easier & not that it would make him live longer, even though it probably would achieve both things. When I left his apartment, I thought I didn't achieve anything. When my mom came home that evening, she told me that she found my Gung-Gung walking up & down the halls, just like we had asked him to do, when she got there for her visit. She was SO happy & gave him a great, big hug. She thought something she said yesterday must've sunk in. When I told my mom that earlier that day, I had such a depressing conversation with my Gung-Gung about walking & about the state of life he's in, she was shocked that I went over there & told me that she didn't think I was actually going to do that. I mean my mom asked me to go over there to talk to my Gung-Gung & I care so much about him, so why wouldn't I do that? I am VERY literal, after all. I Am Incredibly Detail-Oriented. Just a couple weeks ago, we had some concerns about my Gung-Gung's health. He's had a cough ever since his stroke, but he was coughing more than usual. My parents even went over to his apartment one night to give him a COVID test & to set up a vaporizer. The COVID test came out negative. The next day, I was going to take my Gung-Gung to his monthly blood test. My mom texted me in the morning to ask me if I could let her know how I think he's doing once I saw him. When I got there, I was very worried about how weak he was & this was why:
Because of my concerns about weakness, my parents ended up taking my Gung-Gung to Urgent Care after work that day. However, when I spoke to my parents when they got home that night, neither one of them noticed any unusual weakness. My mom told me that the only reason she took my Gung-Gung to Urgent Care was because of my concerns about weakness. Because of my issues with self-confidence, I wondered if I saw something that wasn't there, if my view was skewed, if I had poor judgment, etc. In the end, however, I know I was right to be concerned. When my mom got to my Gung-Gung's for her visit the next day, she discovered that he had a fall because she found him on the bathroom floor. I am SO thankful that this fall did not result in tragedy, but I also believe that this fall wouldn't have happened if he had been using his walker, which we have been trying to get him to use for more than two years. The plus-side of this? He's now using his walker. Did I notice these things because I'm so detail-oriented due to being autistic? Or was my Gung-Gung really not as weak when my parents took him to Urgent Care? I have no idea & I will never know. Adherence To Routines Is Extremely Important To Me. My two consistent responsibilities for my Gung-Gung are taking him to his monthly blood tests & attending his podiatry appointments every few months. I am absolutely committed to those two things & won't let anything ever get in the way of that, whether a job, a social commitment, or anything else. This is partially because it allows me to have much-needed time with my Gung-Gung that is so precious to me & that I wouldn't have otherwise. I Have Deficits In Relationships. Because being autistic has made forming friendships & relationships incredibly difficult, I don't have other social commitments I feel like I am missing out on due to taking care of my Gung-Gung. My Gung-Gung is my whole world & there is no place I would rather be. 🌎 ❤️ Autistic Weaknesses:
I Have Deficits With Verbal AND Nonverbal Communication. My Gung-Gung has difficulties with verbal communication due to his global aphasia while I have difficulties with both verbal & nonverbal communication due to being autistic. I also have a difficult time knowing how someone feels from his or her facial expressions, but it is usually is a bit more obvious with my Gung-Gung, since he usually yells when he's upset. It is difficult that he can't tell me how he feels though. Because of this communication barrier, understanding each other can be very difficult. I've had a lot of time to polish up my communication skills, which do not come naturally. There are two ways which I tend to use to communicate with my Gung-Gung, but I use the first way more frequently:
My Cognitive Processing Is Very Slow. When my Gung-Gung yells, he YELLS! Most of the time he yells, he yells quicker than how quickly I can process whatever it is he's yelling about. I guess it makes it a little easier that because of his aphasia, there aren’t very many words he can use when yelling. It's easy for me to tell that he's mad about something, but figuring out what he's mad about can be a challenge, depending on the circumstances of the situation. I Have Rigid & Inflexible Thought Patterns. I love my Gung-Gung SO much & the Gung-Gung who was part of my childhood valued family & loved spending time with me. Now, he's only accepting of my visits if I'm there for a reason, like to take him to his blood tests or to attend his podiatrist appointments. Plus, he wants me to leave as soon as whatever it was that I was there for is over. Visiting because I love him & I want to spend time with him is not acceptable. That really, really, REALLY hurts, especially because I know that he's always accepting of my mom visiting him. The only way I can get away with visiting him without a reason, like the reasons I mentioned above, is if I bring one of my dogs with me, both who he LOVES. I'm glad I figured out that loophole so early on, but it really hurts that he doesn't want me to visit simply because I'm his loving granddaughter. I know that the stroke changed his brain in drastic ways, but even though I know that, I just cannot accept this new reality no matter how hard I try. I Am Resistant To Change. I have had to learn that when I'm with my Gung-Gung, he's the one holding the reins. Even if I think I know what's going to happen, that might not happen. I do just fine if I have some advanced notice of whatever change is going to happen, but I don't usually get that when I'm with my Gung-Gung. If he's not in charge & things don't go his way, it usually results in him having a fit, which we all try to avoid at all costs. I Have Sensory Sensitivities. I am sensitive to certain textures & flavors of food. For example, I won't eat tofu or anything with strong flavors like things that are even mildly spicy or very sour, to name a few. If my family is having a meal with my Gung-Gung & I don't eat every single thing that is served, he expresses his displeasure in a way that makes me extremely uncomfortable. Being the people-pleaser that I am, this is very difficult for me to deal with, so I've had to figure out ways to hide that I'm not eating what he thinks is on my plate. He also gets upset if he thinks I'm eating too many dumplings or noodles, both things that I love, & he knows it. Taking Initiative & Decision Making Are Difficult For Me. When you're caregiving, taking initiative & decision making are two things that happen often. If a situation happens that I've never dealt with before, I likely won't know what to do. However, if it's something that's happened before, I'll remember what I did in the past & I'll handle it like a pro. I Have Extreme Anxiety & I Don't Handle Stress Well. I feel like no explanation is needed here. Caregiving is EXTREMELY anxiety-provoking & stressful & I don't handle either of those things well. I have so much intense anxiety all the time that I actually don't know what it feels like to not be anxious. I Am An Autistic Person Living In A Post-COVID World. There will be a future blog post about this, but while everyone around me has moved past COVID, I still haven't & I probably never will. I was extremely germaphobic at least ever since I was two years old, long before COVID existed. While everyone around me has stopped wearing masks, I still mask up if I am somewhere where people outside of my bubble are closer than six feet from me. However, if my Gung-Gung is with us & notices me wearing a mask when other people around us are not, that is not okay with him & again, he expresses his displeasure in a way that makes me extremely uncomfortable. Not wearing a mask isn't an option for me as it would cause so much anxiety that I wouldn't be able to function. While being germaphobic is common for autistic people, I have also had some illness-related trauma that definitely exacerbated my fears of germs & illness. Being that today is Teacher Appreciation Day, I thought I would share some of my former teachers' thoughts & memories of me back from when I was a student. I have always respected & admired my teachers & really valued their opinions. I was really surprised that so many of these teachers remembered such details about me when I was in school so many years ago. Reaching out to so many people who were a part of my life growing up was one of the things I did during the self-discovery process that I thought was so worthwhile. I learned SO much about myself from emailing & chatting with my former teachers. I never asked my teachers what they thought of me when I was a student in their classrooms, so asking them this question now gave me really valuable perspective, as you'll see below. I did omit my teachers' & school names to keep my & their privacy safe & secure. 💕 Email From Seventh Grade Language Arts Teacher on August 8, 2022
What a pleasant surprise to hear from you! Yes, I do remember you from Middle School Name. I remember a very kind, shy, reserved student (with black-framed glasses, if I recall correctly) in my Language Arts class. In reading the notes you've shared, I do remember what a hardworking, diligent student you were and that earning top grades was very important to you. I see that I commented that you were "not good with being caught off guard," experienced frustration with group members who are fooling around, and that you interacted better with adults than with peers. I'm so sorry to hear of the challenges you've been experiencing for so long. I wish that I could add more detail to what I remember about you back in 7th grade, but I'm afraid that these meeting notes cover what I can recall. Although I unfortunately don't think I have much to add to the information you've shared with me, I'm happy to chat by phone if you'd like. Just let me know and we can arrange a time. Thank you so much for having the courage to reach out to me, Kim. It was wonderful hearing from you! We did have a phone conversation back in August & chatted a couple more times after that as well. This teacher is no longer a middle school language arts teacher, but is a middle school special education teacher in a different district now. I truly believe that special education is her calling, what she was meant to do with her life. Those conversations I had with her helped me immensely, more than I could ever convey to her (even though I tried). Thank you so, so much for being there for me & for truly listening to what I had to say in such an overwhelming time for me. This teacher is truly an illustration of why teachers are so incredible & so amazing. I was a student in her classroom about twenty years ago & she still made time for me during a time that I was learning so much about myself & was going through so much. At the time I sent her my initial email; I wasn't sure if that was the right thing to do or if I was making a fool out of myself; but after emailing, texting, & conversing with her; I knew that reaching out was the right thing for me to do purely because her kindness, compassion, & helpfulness meant so much to me. It helped me to have the strength to go through all that I was going through while I was discovering so much about myself. I could never thank her enough for her kindness & time. Email From Seventh Grade Science Teacher on August 12, 2022 Wow! So great hear to from you. I am sorry to learn that things have been challenging for you, but am impressed by your perseverance to uncover more information about yourself. In thinking back to seventh grade, I remember you as being a quiet, shy student. You always worked so hard on your assignments, often going above and beyond what was expected of you. I also remember that when we had special activities or field trips, you liked to have your mom join us. I am not sure I can offer too much more than what you have already learned from the notes and speaking with Teacher's Name, but it seems you have a pretty clear picture of your middle school self. I wish you the best of luck on this journey of self discovery. I ran into this teacher while I was walking my client's dog a couple weeks ago. It was really great to see & chat with her in person as well! I have such fond memories of being her student about twenty years ago. Email From Second Grade Teacher on August 15, 2022 Thank you for reaching out to me. I am sorry to hear that you are experiencing some health issues and hope that you are able to resolve them as soon as possible. And while it's been a very long time since you were in my class and I can't recall every detail, I do have some clear memories of you. Yes, you were a very quiet and shy child. You seemed quite content to keep to yourself, and not too interested in other children. Making eye contact and initiating conversations weren't things you did often. Lately, more often than not, there is a student in my class who is on the spectrum. Each one has his or her own characteristics - but one common denominator I've witnessed is that students often are super-focused on specific things. For you, it was the love you had for your bunnies! Books you read and stories you wrote were all about bunnies. It sounds like you are doing all the right things to determine what's going on. If you receive this diagnosis, I wouldn't be surprised. I know I haven't added much to what you already have stated but if there's anything else I can do to help you, please let me know. Email From Middle School Physical Education Teacher on August 15, 2022 Thanks so much for the message! Of course I remember you!!! You are in your thirties?!?!? I'm getting old! I appreciate the kind words you gave me. Thanks so much. I remember you being very shy to start. I was informed of your dislike for PE so I was going to change that!!!! I remember you being stubborn!!!! I would try to get you to do some things that you would just not do!!!!! I do remember getting you involved in an asteroids game in which people could get back in ONLY if you throw them an asteroid!!! I was so proud of you for participating. Everyone was calling for your help!!!! Unfortunately, he wasn't able to change my dislike of PE, but he did make a huge difference in my experience in it. His kindness & compassion made it so that PE wasn't nearly as frightening as it was in all other grade levels. When I look back on PE, I have traumatic memories of PE in all grade levels except for middle school. The reason for that is because of his kindness, compassion, & the extra time he took with me. Quotes From Phone Conversation With High School Special Education Teacher on August 23, 2022 "I can totally see what you’re saying, especially looking through your early childhood development & some of the comments that teachers made & even your dad saying that it was something in the back of their minds. I can definitely see where your primary care physician may suggest that you look into that." "Definitely now that you’re saying that you’re looking into traits that you may have exhibited that you know to be in that autism checklist, I definitely remember you being very bright & artistic, creative. You definitely needed to be pulled out if you had a question or a concern, you weren’t always comfortable expressing that. Or advocating for help with your teachers. I saw over the four years, you became much more comfortable as time went on. And as you became comfortable with me, it definitely was easier for you to ask for help & advocate for yourself." "You tended to be very withdrawn when I first met you & then definitely came out & advocated a bit more junior & senior year. And people around you also made a big difference. I noticed that depending on who was in the classroom with you, who was in your skills class, & who was seated around you, that definitely had an impact on how comfortable you were, even making eye contact or joining in a conversation." "There were some times where I would think, "Aww, she’s just not comfortable in here" & I didn’t know if it was who you were sitting near or just the class in general. And then other times, I was just so happy because you seemed more at ease & I felt like you would ask for help or accept help more readily, depending on your surroundings & who was in your class." "I would not be surprised if you received this diagnosis. I feel like if you came into high school now, just from what I’m remembering, we would have a lot of red flags, where we’d say, "Oh, well, let’s look at this & let’s connect with Kim’s doctor" & we’d look back at your history, your educational history, whether you hit those milestones, things like that. I’m definitely not surprised that your doctor brought that up & I’m just so glad that you’re pursuing this because I think it will make a huge difference." Email From Freshman Year English Teacher on September 11, 2022 Yes, I absolutely remember having you as a student- it's so nice to hear from you! However, I am very sorry to hear about your medical struggles. It must be so frustrating to have had to deal with those for so long without having any clear answers as to the causes and the remedies, so I think you're doing the right thing in getting evaluated for the possibility of having autism spectrum disorder. What I do remember is that you were one of the best students in my class: very intelligent, and an excellent writer and reader. Yes, you were shy and quiet, but I've taught lots of students who were the same way, so your traits didn't seem out of the ordinary to me at the time. Please know that I always thought very highly of you and you made quite a favorable impression; that's why when I saw your name on the email, I instantly knew who you were. Sadly, I would not be able to say the same for many of the other students from the 2005-2006 school year. Email From High School Art Teacher on September 11, 2022 Of course I remember you :). It is good to hear from you. I remember you as a very hardworking and conscientious student. You cared about doing well in school. You were always well behaved and a pleasure to have in the room. Thinking back, I would describe you as a quiet student. You did not initiate many conversations. However, you were not afraid to come talk to me if you had something on your mind. I am not sure if I would describe you as shy or just quiet. Sometimes those two characteristics might be hard to differentiate. Feel free to contact me any time. I am happy to give you any information that I can remember. Quotes From Phone Conversation With Eighth Grade Algebra Teacher on September 12, 2022 "It was a long time ago, but I do remember you & I do remember you were a very diligent, excellent student. You always tried hard, but you were a little bit more to yourself. I do remember that you weren’t super social, you were very focused on school, the academic part of school & not so much the social aspect. That’s what I remember, Hun. That’s kinda what sticks out & I remember you were very sweet, nice, lovely, hardworking student, but I do remember the social piece, as being maybe more of a struggle." "I’m not surprised to say that’s something you’ve felt about yourself & there’s so much to the autism spectrum. I do kind of see that you could’ve fit that description of someone who really, the social part really was more of a challenge. And, I was a young teacher back then, I was just maybe ten years older than you, so I was kind of paying attention to the social thing." Email From Fifth Grade Math & Science Teacher on September 28, 2022 It is so nice to hear from you! Of course I remember you! Thank you for reaching out and sharing your story with me. It sounds like it must have been a long road and I applaud you for continuing to look for some answers. I remember you as a very quiet girl in 5th grade. You didn't talk very much, but would respond with body language. You had a great smile and you smiled a lot in response when someone was talking to you. You presented as someone who was very shy and walked down the hall typically next to an adult. I also remember your movements and work completion was in a much slower manner than others. I used to think that you were just taking things in and processing them. Please feel free to reach out at anytime. Multiple times throughout this blog, I have referenced the three levels of autism, but what exactly do the levels of autism mean? And what's the difference between them? Let's get into that right now. Each person who received an autism diagnosis after May 2013 (when the DSM-5 was published) was diagnosed with level 1, level 2, or level 3 autism. The difference between the levels is simply the level of support that a person needs in his or her daily life, with level 1 autistics needing the least amount of support & the level 3 autistics needing the most amount of support. I am a level 2 autistic, so that means that I fall right in the middle. Level 1 Autism Spectrum Disorder:
Level 1 autism was formerly known as Asperger’s syndrome, high-functioning autism, or the mildest form of autism. It is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Although there isn’t just one set of characteristics that level 1 autistic children AND adults have (remember autism is a spectrum with a very wide array of characteristics), there are some traits & experiences that level 1 autistics tend to have in common:
Level 1 autistic people might also experience depression or anxiety that is the direct result of social difficulties. They also tend to get bullied or left out of social situations, which can lead to mental health issues & difficulties later in life. I personally experienced very severe bullying from early childhood all the way through college, with the worst of it being in my mid-teens & beyond. I will get more into this in a future blog post. Level 2 Autism Spectrum Disorder: Level 2 autism is where I fall on the autism spectrum. This level is in the middle of the spectrum & usually requires substantial support for independent & successful daily living. Level 2 autistics tend to experience all of the level 1 characteristics, but to a greater degree. They also might have more noticeable stimming behaviors (sometimes called restricted or repetitive behaviors). Stimming isn't something to get rid of unless it causes harm to the autistic person or to the people around them. Hair pulling, biting, slapping, & banging the head against something are all examples of harmful or dangerous stims that should be gotten rid of or exchanged for another stim that isn't harmful or dangerous. Level 3 Autism Spectrum Disorder: Level 3 autism was formerly known as low-functioning autism or severe autism. However, it is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Level 3 autistics require very substantial support for daily living. This means that they would benefit from more assistance & more accommodations at home, at school, at work, in the community, in relationships, etc. in order to live as independently & as successfully as possible. Level 3 autistic people may also need a lot more supervision, even in adolescence & adulthood than level 1 & level 2 autistic people do. Level 3 autistic children AND adults tend to experience all of the level 1 & level 2 characteristics, but to a much greater degree. Some other common characteristics of level 3 autistics are:
Final Thoughts: The levels of autism are the medical community's way to help clarify the needs & abilities of autistic individuals. It is also important to remember that individuals across all areas of the autism spectrum have amazingly unique strengths & abilities that neurotypicals often do not have. We need to remember to recognize & support these strengths & abilities as well. Regardless if someone is a level 1, a level 2, or a level 3 autistic person, all autistic people experience this world very differently from each other. We all may struggle with daily living, but in very different ways. Is Autism Really More Common In Males?: Statistically, boys are four times more likely to be autistic than girls, but because we know so much more about autism now than ever before, we are now questioning if it is actually more common in boys or if it is just more commonly diagnosed in boys. Since it was historically believed that autism was more prevalent in boys than in girls, scientists & doctors have focused their autism research on boys. Because of this, the diagnostic criteria for autism is modeled around male behavior. What we didn't know until very recently is that autism can look very differently in girls. Since autistic girls often have different traits that do not match the diagnostic criteria for autism, traits are easier to miss & are mistaken for other things, like shyness & social anxiety, which are much more socially acceptable in girls than in boys. Girls are also more likely to mask their autistic traits & may mimic appropriate social behaviors by copying behaviors that they see in everyday life & on tv in order to fit in. For example, many girls & women force themselves to maintain eye contact by looking in between someone's eyes rather than into them if eye contact makes them uncomfortable. (I do this until a certain level of comfort with a person is reached, which is when eye contact becomes comfortable & natural for me.) Masking is something that is much less common for boys & men to do. Girls are also often diagnosed with depression &/or anxiety, conditions that frequently coincide with autism, rather than with autism spectrum disorder itself. Because scientists & doctors just began learning about how autism presents itself differently in females within the past decade, many women in their twenties & older have just now been receiving the autism diagnoses that they deserve. Many of these late-diagnosed autistic women never presented stereotypical male autistic traits. These women tended to be evaluated for & diagnosed with autism spectrum disorder after having significant problems with things in their adult lives such as treatment-resistant mental health issues, employment, friendships, romantic relationships & more (all things I struggle with). Other women were diagnosed after their child(ren) was/were diagnosed & they recognized some of the same traits in themselves. I truly believe that the reason I was not diagnosed during childhood is because of my gender. What Does Autism Look Like In Females?:
Social Deficits
Pretend Play One of the most common traits of both male & female autism is not knowing how to participate in pretend play. However, it is more likely that this struggle will be noticed in boys because girls tend to be taught from a very young age to be little caretakers, taking care of a baby doll or a stuffed animal. Because boys tend to be not taught this, struggling with pretend play is much more obvious in males. However, I only knew how to play with baby dolls & stuffed animals. When my little cousin asked me to use her plastic horses & farm animals to engage in pretend play with her, that was a struggle for me. I would often ask my little three-year-old cousin what to say or do. My aunt bringing out a craft project for me to help my cousin with brought great relief! Special Interests One of the most common symptoms of both male & female autism is having a special interest. However, male special interests tend to be very specialized & technical, where female special interests tend to be more "normal." For females, the level of intensity of the interest is what is abnormal. Because of this, it can be harder to notice the difference between a "normal" interest & a special interest. Common special interests in females are:
Wheels Many autistic children have a fascination with spinning wheels that are on a toy truck or train, for example. However, because toy vehicles tend to be boy-specific toys & I was a very feminine girl, I didn't own any toys that had wheels other than a child-sized stroller I used to push my baby dolls & stuffed animals around in the neighborhood. Miscellaneous
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! |
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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