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:
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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. 💙 Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
And This Is The Story: The Week Of August 28th: One morning, my mom was coming home from walking one of our dogs when she heard scuttling coming from underneath the hood of my car. Thinking there must be an animal in there, she asked my dad to investigate. When my dad opened the hood of my car, there was a chipmunk inside. He yelled at it & scared it away. 🐿️ Sunday, September 3rd: My brother, who was home last weekend for my birthday, was waiting to take a walk with my mom & one of our dogs when he heard scuttling coming from underneath the hood of my car. Knowing that there was a chipmunk in there just a few days prior, he told our mom about it. She gave him my car keys & asked him to get rid of it. When he opened up the hood, there were at least four chipmunks in there. This time, the chipmunks were staring at him, seemingly unafraid & unwilling to move. My brother, afraid of the chipmunks, grabbed a broomstick from the garage to try to get them to leave. They scurried out. My dad also put some mothballs inside a little KFC takeout container which he put inside there to deter chipmunks from making the hood of my car their home in the future. 🐿️ 🐿️ 🐿️ 🐿️ Tuesday, September 5th: A couple days later, I was driving to & from my dog walking clients' houses & thought to myself, "There is a really strange smell in the car." Not confident enough in my ability to recognize the unpleasant smell of mothballs, that night, I asked my dad if the smell of the mothballs he put in the hood of the car could possibly effect the smell of the interior of the car. He replied that that is certainly a possibility & one that he thought of, too. Wednesday, September 6th: The next day, my dad told me that he investigated the smell inside my car & it's definitely not mothballs. He smelt the hood of the car & it doesn't smell. The interior of the car did smell though, so he asked me if I spilt anything inside the car, even if it was water. I told him that I definitely didn't spill anything in the car. The only thing I ever regularly consume in the car is water & it's always in a very tightly sealed water bottle that I'm sure didn't spill. I said to him, "I wonder if Mom drove the car & spilt something in it without telling us." That was the only thing I could think of because I know my mom has a tendency to spill things in cars. Then, I went on to say that it was a very strange coincidence that a couple of days after we found chipmunks in the hood of my car, the interior of the car smells. My dad agreed. I was pretty certain that the smell had to do with chipmunks & not with a spill. Friday, September 8th:
It was a super hot & humid day & I was driving to & from my dog clients' houses again. Between walking my own dog & walking my clients' dogs, I was super hot & sweaty. So, I put the car's air conditioner on maximum strength. I then started to notice the unpleasant smell in my car getting significantly worse. A thought went through my head: What if that smell isn't mothballs & there's actually a dead chipmunk lying next to the vents in the hood of my car?! NO, NO, NO! That better not be the case! That better not be! Well, I totally forgot to mention this to my dad by the time I got home. The reason why? The largest rainstorm I've ever driven in happened that afternoon on my drive home. Super stressful drive. It came on so suddenly & without any warning. One moment it was cloudy & the next, it was like I was driving through the middle of a hurricane. There was so much rain that I thought the water was gonna swallow up my car with me inside of it. I could barely see & I didn't think it was safe to pull over either because I didn't think anyone would see me if I did. Saturday, September 9th: The next morning, when I was about to take my dog for his walk, I noticed that the hood of my car was open. So, I asked my dad if he was still investigating the smell. Not surprisingly, he pointed to the backside of my vents & said, "There's a dead chipmunk in there, but I can't see it. I tried looking with the flashlight on my phone & can't see it, but I know it's in there." I KNEW IT. I asked him what we're gonna do about it. Do I have to drive around with a dead chipmunk inside the hood of my car for the rest of the time I drive that car? And most importantly, how are we gonna get the smell to go away? His response? We're not gonna do anything about it because if we can't see it, we can't get rid of it. It will stop smelling. Eventually. The most surprising thing he said though? The chipmunk was probably sick & dying & went in there because it was a nice, quiet place for it to die alone. Yeah, right. 🤦🏻♀️ When I told my mom about my chipmunk situation, she Googled what to do about a dead chipmunk inside the hood of your car. I mean, what else should the queen of Google do? An article she came across said that it can take many months for the smell to go away on its own & it suggested purchasing something called a dead mouse deodorizer. We purchased that from Amazon. 🐿️ Sunday, September 10th: The next afternoon, I had to drive to the next town over to meet my new cat sitting client. I had just barely left home when the world's most horrible smell came over me. I had walked my dog just before this, so yes, the A/C was on. And due to the humidity, it was on maximum. I quickly opened both back windows & put them as far down as possible. I seriously thought I was gonna vomit. The smell was a gazillion times worse than it had ever been before. I was so glad it hadn't started raining yet or I don't know what I would've done. I probably would've died. Or come close to it. By the way, my dad's story changed. Now, he told me that my brother only saw three out of the four chipmunks scurry away last weekend. One of them disappeared. That makes a lot more sense. A chipmunk did not in fact choose its dying place to be behind the vents inside the hood of my car. So, that means one of two things likely happened:
Sensory Sensitivities: Now, let me take a moment to tell you about the open windows in my car, as I mentioned above ↑. I can't tolerate open windows in a car, in a bus, in a ferry, in anything that is moving pretty much. Blowing air, breezes, wind, etc. They all bother me SO much. Convertibles, open air jeeps, etc.? Forget it! That's why I opened my back windows & not my front windows. You know when kids are little & they sit in front of a fan, going, "Ahhhhhhhhhh..." because they love how the fan changes the sound of their voices? I never did that because that would require me to sit in front of a fan. Sitting in front of a fan meant air blowing in my face. Nope, nope, & nooooope! I even had trouble in college with fans. The dorms when I was an underclassman were not air conditioned, so we depended on fans to keep the room cool in the warmer months. That was a problem for someone like me who is intolerant of fans. Also, I have all the vents in my car turned away from the driver's seat so that no air will blow on me while I'm driving. During times where I'm really hot, I have turned them back towards me briefly, just until I cool down before turning them away again. In fact, one time when my dad drove my car, he wondered why he was so hot & then he realized that the reason why was because all of the vents were turned away from the driver's seat! 💨 Monday, September 11th: Last night, a very close friend of mine took me out to dinner for my birthday. Just what I needed. I texted her the evening before to ask her if she could pick me up. I had no clients yesterday, so if I didn't have to drive to dinner, I wouldn't have to drive at all that day. Breathing in that horrible, vomit-inducing stench right before sitting down to dinner? I'd rather not. I mean, there's no good time for that, but right before a meal is an especially bad time for that. Tuesday, September 12th: I had three clients I needed to drive to today & I could barely smell the stench in my car. Could the stench have not been there at all & I'm just imagining it? Quite possibly. I'm still not convinced that this is the end though. There were days that the smell wasn't as bad & then it got bad again. I guess we'll just have to wait & see. Many autistic people have sensitivities to smell. Luckily, I am not one of them. But, being that I am so sensitive to blowing air, my sensory sensitivities did play a factor into how I am surviving this chipmunk situation. And that, everyone, is my story about autism & chipmunks. 🐿️ As my eighth grade school year neared its end, there was so much excitement & chatter among my classmates about high school. High school. Now those were two words I never wanted to hear. If you had asked me about anything having to do with high school that year, one of two things would have happened:
Throughout my life, each transition that I've experienced was harder than the one before. Now, I know why. Autism. We're known for having a tough time with change. Middle school wasn't a time that I would ever want to relive (I mean, who would?), but high school? Now that was terrifying. Eighth grade was the first time I ever had a male main subject teacher. My science & homeroom teacher, Gil, really took a liking to me. He gave me special treatment & gave me privileges that no one else in the class was allowed to have. He even intervened in situations where I didn't think it was necessary. He simply wanted to be there to take care of me. Being someone who didn't (& still doesn't) trust men, I considered myself pretty lucky to have had Gil be my first experience with a male teacher. He's retired now, but I've been able to reach out to him a few times since my college graduation to thank him for being so good to me. Anyway, Gil knew that I was nervous about going to high school, so he met my parents, my grandparents, & me one day over spring break to give us a personal tour. He used to work at the high school, so he knew it pretty well. My town was growing so fast, that the eighth grade needed to be moved to the high school for several years because there was no longer room for it in the middle school. By the time I entered eighth grade though, the grade had moved back to where it was supposed to be. I'm not sure how much that tour helped my transition to high school because just the idea of going to high school was SO upsetting. I knew I had no other choice because staying in eighth grade forever & skipping high school weren't viable options either. Having that love, care, & extra time from a teacher who could've been spending his spring break doing so many other things meant so much to my family & me. My First Day Of High School: Now, this is something I hate to admit, but on the first day of high school, as I was walking to the bus stop, there were big, ugly, fat tears that wouldn't stop forming. Like many parents, ever since I started school, my mom has always taken a picture of me on the first day. I couldn't pull myself together enough to take a picture that morning, so my mom took a picture of me after school instead. To this day, when I look at that picture, all I see is a sad, scared girl hidden behind the smile on her face. See below↓. On that particular morning, my next-door neighbor was looking out her front door at me walking to the bus stop, full of excitement for me. My neighbor was someone I have been very close to ever since I was a toddler, but I couldn't manage to turn to look at her for even a brief second because my face was so streaked with tears. Luckily, my mom could be my voice that morning, providing an explanation for my strange behavior which was completely embarrassing. What Exactly Was SO Terrifying?: There were three main things that were upsetting about going to high school.
I know that this is a very vulnerable & heartbreaking post, especially for those who know me personally. Please know that everything written in this post was written with my heart & soul & is absolutely true. School is very, very difficult for us autistics & my experiences are illustrations of why this may be. 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:
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:
I have to begin this post by saying that I am so lucky, being someone who has felt so loved & so supported, particularly by my family & close friends, throughout the entirety of my autism diagnosis journey & beyond. I know that many, many people who receive diagnoses as adults, or even as children, are not as lucky as I am & are forced to find their footing in this neurotypical world on their own. Going off of that, a couple of days ago, my best friend texted me an article about the rise of neurodiversity at work. Interestingly, several weeks before, my cousin had emailed me a different article on the same topic, that was included in her work's most recent newsletter. Both articles were very similar, making very similar points about employers being more accepting of autistic & neurodiverse employees now, more than ever. The articles even made statements regarding how in certain aspects, neurodiverse employees add more value to a company than neurotypical employees do. However, when I read articles like these, what I'm seeing is that while we're definitely in a much better place now than we were before, significant changes still need to be made in the workplace & beyond. I had an interesting conversation via text with my best friend I'd like to share with you & that's what today's topic is about. Let's Step Away From The Technology, Mathematical, & Science Industries For A Moment: When you think autism, you generally think Dr. Sheldon Cooper in The Big Bang Theory or Dr. Shaun Murphy in The Good Doctor. I mean, this autistic stereotype is clearly illustrated within their characters, after all. Both articles that were sent to me mentioned this stereotype. My view on this is that articles written about this add to our already existent stereotype, rather than combatting it, which is what we really need. For example, the article my cousin sent me stated that, "Employers have begun to realize that individuals with autism are assets to the company, especially in the engineering and technology industry, where skills such as attention to detail, extended focusing, and mathematical concepts are in demand." On the other hand, the article that my best friend sent me mentioned that some industries, like tech & finance are moving faster than others when in comes to neuroinclusion. While I think that's great, what I'm more interested in are the other industries. Personally, I am someone who would not thrive in any of the stereotypical autistic industries. While I thrived in algebra & statistics while I was in school, I am not a technical- or a mathematical-oriented person. To be totally honest, I inputted numbers into formulas to get the answers because my teacher or professor told me to, but I never understood why I was doing that. And I was never required to remember the formulas I learned because having notecards for tests was an accommodation I had in both high school & college. Autistic people can also be extremely creative, be talented writers, & be great with animals. I can tell you that this is where my personal talents lie. Several industries autistic people tend to thrive in are journalism, animal science, pet grooming, animal care, filmmaking, videography, animation, photography, & graphic design. In elementary school & middle school, I spent my free time writing poetry. In high school & college, graphic design was my hobby. Even though I didn't write poetry as often when I was older, I often still used it to express my feelings. We don't hear about the link between these particular industries & autism often... or at all. What I'm interested in is how THESE industries & other industries outside of the technology, mathematical, & science fields are embracing autistic people & becoming more inclusive. Where These Autistic Stereotypes Came From:
I believe that these autistic stereotypes were created because there are so many undiagnosed autistic females. The technology, mathematical, & science industries are all male-dominated fields. So, of course if undiagnosed autistic females work in other fields, people are unaware of autism's presence outside of the tech bubble! A great illustration of this occurred shortly after I had a conversation with my physician about the fact that I am likely autistic. In my quest to learn more about autism & about myself, I purchased the book, I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults. When I finished reading it, I gave it to my dad to read. After my dad read the autistic traits section of that book, he told me he knows many people who are like the type of person Cynthia Kim is describing. My dad was an engineer for over twenty-five years, so I'm sure that many of his former colleagues are autistic. Engineering is one of the fields that fits that autistic stereotype. Also, after everything I have learned about autism over the past year, I believe that my dad is autistic himself. Where This Leads Us: While it's great that more & more organizations are willing to talk about & accept autism & neurodiversity, there clearly is significant work that still needs to be done. It is time for all industries to be more inclusive & welcoming; but I am most interested in what the industries outside of the technology, mathematical, & science fields are doing to achieve this. Mother's Day is a day to celebrate the women who have made a difference in your life, whether that's your mom, your grandma, your aunt, your second mom, etc. I am so lucky to have had the experience of having both a wonderful mom AND second mom. Having a second mom is a true gift. It really takes a special person to make someone who isn't your daughter feel loved like she is. So, let's talk about my close friend, Beth, for a moment. I have known Beth for about twenty-five years now. She was my classroom aide back when I was a little second grader. And she is probably the person who knows me best, after my parents. Every single part of school was painfully difficult for me, but the academic aspects of it were (sadly) a breeze compared to all other aspects. I didn't have friends, I was bullied very severely, & because of my gross motor difficulties, I couldn't keep up with the other children at recess, even if I wanted to. I also didn't know I was autistic. I know I leaned on Beth way more than I should have back then. But, she was my only friend. She was who I hung out with at recess, who I laughed with, who I wanted to spend my time with, etc. Her time, her kindness, & her love made such a huge impact on my life back then. She really took me under her wing & she made school so much less painful than it would've been without her influence. As I grew older, our relationship only grew. I've told Beth things about myself & thoughts that I've had that I've never told anyone else, not even my own mom. I love my mom with my whole heart, but with my mom, I have fears about disappointment, judgement, & worry. Fears that probably every daughter with a caring & loving mother has. With Beth, those fears are not there, but the love & care that I so desperately need is. She's someone I confide in & tell my deepest secrets to. I also sometimes share my worst fears & concerns with her, so that I don't worry my mom. She's allowed me to vent & complain about whatever it is that's on my mind, as well. Her life experiences, perspective, & advice have been so valuable to me throughout the years. Because of the way I've been treated by my peers when I was growing up, the intense bullying, being constantly left out, I've built cement walls around myself that are so strong that even a bulldozer couldn't knock them down. With Beth, there are no walls because with her it's total comfort all the time. She was one of the first people I told that I was going to be getting an autism diagnosis & I was certain that that wouldn't surprise her. I was right. But, not only that, sharing this information with her only made our relationship stronger.
Beth has done so many things over the years to show me she cares. Here are a few examples:
I am so beyond thankful to have such an amazing person & friend in my life who has changed my life in countless ways. I love you so much, Beth! If there is anyone else reading this who has taken someone in who is not their own daughter & made her feel loved, I want to thank you from the bottom of my heart. It takes a really special person to do that & what you're doing really, truly matters. I know because it did to me. 💝 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
I have had mental health challenges all my life & quite truthfully, I cannot remember a time where this wasn't an issue. A very difficult transition to college caused my symptoms to get out of control, so that's when I tried to find a medication to help me feel better. I frustratingly wasn't able to find anything that gave me relief even by the time I was in my thirties. At my appointment with my physician in mid-June 2022, she suggested getting evaluated for autism spectrum disorder. Between trying an impressive number of medications, none of which made any difference, along with other traits my physician had noticed over time, she thought it was likely that I was on the spectrum. When my physician asked me if I met my early childhood milestones on time, if I was ever diagnosed with a learning disability, & if I experienced bullying in school, all of my answers were in line with someone on the spectrum. My physician then went onto explain that so much more is known about autism now than when I was growing up. The stereotypical autistic traits are male traits, but autism can look very different in females. Sometimes undiagnosed autism in females can look like treatment-resistant depression & anxiety (something I have struggled with for many years). When there's a condition such as autism that could also be causing depression & anxiety symptoms, sometimes medications don't work like they're supposed to. I then had an aha moment & was so thankful to have such an observant physician. I am certain that my mental health challenges coexist with autism spectrum disorder, especially since these mental health challenges do run in my family, but I learned so much that day about the cause of my lifelong difficulties. I spent the summer of 2022 educating myself about autism. I read several books about how it presents itself in girls, in women, & in adults & I connected to what was in these books on so many levels. I felt like these books were written about me because they were descriptions of me throughout my life thus far, from my early childhood all the way to what I currently experience, in adulthood.
On October 20, 2022; I received confirmation of what I already knew about myself: I am autistic! More specifically, I have level 2 autism out of three levels total. The instant wave of relief I experienced that day when the evaluating psychiatrist told me that I am on the autism spectrum was absolutely incredible & was like nothing I had ever experienced before in my life. |
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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