It is no secret that autistic police brutality is a real problem. From beatings & violent, wrongful arrests to deadly shootings; the aggressive force police use against us, autistics, is our unfortunate reality. In fact, I DON'T FEEL LIKE POLICE OFFICERS PROTECT ME at all, but to be quite honest, it is the exact opposite— I FEEL LIKE I HAVE TO PROTECT MYSELF FROM POLICE OFFICERS. When I look at police officers, I see the grownup versions of my high school bullies. I knew for a fact that the majority of the guys who bullied me in school, the guys who made my high school, my middle school experiences a living hell were going onto college to study criminal justice to become police officers. It does make sense. The tough guys in school. The guys who bullied the quiet, meek girls like myself. They have the exact right type of personalities, the desire & the thrill deep inside of them to want to catch the bad guys. Of course they want to become cops! I have been absolutely petrified, absolutely terrified of police officers my entire life & that is the main reason why. In my mind, POLICE OFFICERS ARE BULLIES, people who misunderstand me, people who mistreat me, people who don't treat me like a human being. And no one, no situation has ever proven me wrong. Interacting with police officers causes me so much stress that my autistic traits become much more exasperated, much more visible than they are typically. But, even with how exaggerated my autistic traits become, I still don't "look autistic" in a stereotypical sense. I spent the majority of my life not knowing I was autistic, but despite that, I still knew that my interactions with police officers were dangerous. While I never act in ways that are considered "typical," that is exaggerated exponentially when I'm faced with high-stress situations, like when I'm in the presence of law enforcement personnel. And when police officers see someone not acting "typical," they often assume the worst & react in ways that put the life & the well-being of an autistic person, such as myself, at risk. I now know that the kind of stress police officers trigger inside of me causes autistic shutdowns. Before I knew I was autistic, I knew that I shut down when in the presence of police officers, but I had no explanation as to why that was. During an autistic shutdown, I more often than not become nonverbal, meaning, even if I wanted to talk, it would be impossible for me to make the words come out. And if I am able to talk during an autistic shutdown, I don't have control over what I am saying, my words often not making any sense. Acting in this way when conversing with police officers is extremely problematic because a person who acts like this is typically on drugs. I'm not on drugs; I never have been & I never will be. It's being autistic that makes me act this way. On top of that, it takes an extremely long time for me to process information & it takes exponentially longer when I'm highly-stressed. So, when spoken to by a police officer, I am often non-responsive. Not because I don't want to respond, but because I physically can't. I simply haven't had enough time to process whatever was just said to me OR that I was spoken to at all. Having an extremely long processing time is very common with autistics, but again, it is also very common with drug users. During the few interactions with police officers I've had in my lifetime, I have been told every time that there was something off about me, that they thought I was on drugs when they first interacted with me. It would have been SO helpful to know that I was autistic at the time I had those interactions rather than for those police officers to automatically assume that I was on drugs. The fact that it is automatically assumed that I am on drugs when I'm not is awfully troubling. This is why soon after I received my autism diagnosis, I designed myself an autism wallet card. This card explains that I am autistic, what autism spectrum disorder is, as well as certain behaviors that I may exhibit that others will likely perceive as unusual, but they are actually very typical behaviors of an autistic woman. I also wear a medical alert bracelet that contains my name, my diagnoses, & an emergency contact number. Plus, it states that I have a wallet card. I did this because I know that it isn't safe to reach for something without asking the police officer for permission first. But, since I often have trouble communicating verbally with police officers, I needed something that would allow me to safely communicate that I'm autistic & I have a wallet card without needing to speak. The reason why I have an autism wallet card & wear a medical alert bracelet is to protect myself from police officers, something that shouldn't be my job or my responsibility to do. Not only is a police officer's job to protect us, but I shouldn't have to disclose my disability in order to be treated with respect or to keep myself safe. My autism wallet card is pictured below (click on it to view it larger). Now, police officers aren't purposely harming autistic people. They simply aren't educated about how to recognize autism & the different behaviors autistic people exhibit. For example, when police officers see a person:
Autism Training & Education:
Police officers across the country & around the world are just not being properly educated or trained on how to treat & interact with autistic individuals. In fact, the type of & the amount of autism training that police officers receive is variable in different police departments in cities across the country. Plus, it's usually voluntary, not mandatory. Another problem is that the education police officers receive on autism tends to be tacked onto the end of the training on another topic. When this happens & only a short discussion is had about autism, how are police officers supposed to get the training, we, autistic people so desperately need them to have? On another note, it's hard to even pinpoint what constitutes as effective training. There is very limited research on how well various kinds of training programs work & ineffective training does more harm than good. There is also some research that suggests that while proper autism training makes police officers understand autism, it still doesn't make them any less likely to use force on autistic people. There really needs to be police training on autism that is standardized across all departments nationwide. However, some experts & advocates say that the best way to decrease violence is to minimize interactions between police & autistic people altogether. That just doesn't seem like a viable solution to me though, especially for autistic people like me, who drive. The Blue Envelope Program: The Blue Envelope Initiative represents a collaborative effort aimed at fostering a safer & a more understanding environment for autistic drivers during motor vehicle operator interactions & traffic stops. This program was just introduced in Massachusetts, the state in which I reside, earlier this month. It involves a Blue Envelope, which is intended to hold a driver's essential documents— a license, the car's registration, & a contact card. However, the significance of this envelope isn't that it is just a storage solution. This envelope features critical communication guidelines on its exterior, specifically tailored to assist law enforcement officers in recognizing & adapting their approach when interacting with a autistic drivers. While the thought behind this program is great & it shows that Massachusetts is trying, as an autistic driver, I don't love everything about the Blue Envelope Program. This is why I have a problem with the Blue Envelope Program:
Also, ever since the Massachusetts Police Department announced the introduction of the Blue Envelope Program, I have been reading numerous comments online from allistic people about how people who require a Blue Envelope in order to have simple conversations with police officers shouldn't be allowed to get behind the wheel. These comments are extremely hurtful & extraordinarily ableist. The people who made these types of comments clearly don’t understand autism or how it impacts people. I probably will get a Blue Envelope to keep in my car only because Massachusetts police officers recognize its purpose. But, it will either remain empty or I will put a few of my autism wallet cards inside of it. I don’t love the idea of keeping my driver's license anywhere other than my wallet. When Interacting With Police Officers, Autistic People May:
Key Facts About Autism, Disabilities, & Police Officers:
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What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
I'm going to start this blog post off by saying this: this is the most vulnerable blog post I have written thus far. Some things that are in it are things that I've mentioned before & some things aren't. But, everything in this post is as real & as raw as it gets, is one-thousand percent true, & is something that I felt needed to be said. Growing up, & even now, my life was & is a struggle. I was autistic & I didn't know it for almost thirty-two years because I grew up at a time when girls like me were just not diagnosed with autism. I was living in a world that I didn't fit into, but I had no understanding as to why that was until about a year & a half ago. I was so lucky because my parents did everything they could to give me the BEST childhood ever. And I'm so thankful for that. However, there were certain things that no matter how loving & how supportive my parents were, they just couldn't protect me from. Every autistic person you talk to will have something to tell you about how society treats her or him; about the trauma that (s)he endures on a daily basis. The way neurotypical people treat us does real, long-lasting harm. I never understood why people treated me so poorly because I didn't think I did anything wrong. Were they treating me that way because I simply exist? Probably. The bullying I experienced in elementary school through college was INTENSE, & it only worsened the older I got. From being made fun of for being too quiet to having my feet walked on top of on a daily basis to being barked at & growled at like an angry dog to boys trying to trip me in the hall & slapping my butt when I was at my locker. Freshman year in college, they put me into a quad with another Shrewsbury alum who inserted nasty things about me into the brain of another one of my roommates. They ganged up against me & made my life a living hell for the entire year. A couple years later, a different roommate suddenly gave me the silent treatment & I had no idea why, until one of her friends told me. It was because I was uncomfortable with boys sleeping over in our room, something that I thought was perfectly reasonable, especially for a quiet & a timid girl like myself. I was never given the chance to make any sort of compromise because she never told me why she was so mad. Many years later, I found out that this particular roommate now has an autistic child. What a coincidence! Being treated with such cruelty on a daily basis for so many years is extremely traumatic for us. And it often has the same types of consequences on our brains as going to war, witnessing someone get murdered, or having an abusive spouse would. It just takes a much longer amount of time to do the same amount of damage. More than 40% of autistic individuals struggle with post-traumatic stress disorder & although I have never been diagnosed, I do think I am one of them. I think that the effects of having to endure the type of treatment I described above for so many years is why it takes me such a long time to trust someone, even now, as an adult. I also never really voiced the significant amount of pain I was experiencing to my parents because I didn't want to worry them. So, I didn't get as much support as I probably needed while I was going through that. I knew I have caused them A LOT of worry ever since the day I was born & I didn't want to add to it even more. From a very young age, I wanted to do everything I could to be the best daughter I could be, even if it meant unintentionally harming myself. When I first learned from my physician that the cause of all of my lifelong struggles was due to living with undiagnosed autism, I took a couple of months to process it & to learn more about how autism affects girls & women. But, after I did that, I wanted to do more digging into my past to learn more about how autism affected me as a young child & as an adolescent. I knew that when I was in school, my mom kept a very thick manilla envelope full of documents & letters from various medical professionals & educators. Knowing how organized my mom always was, I asked her if she still had that envelope & she did. This envelope ended up being a treasure box into my past, containing a lot of information, some that I never knew about myself, from when I was less than a year old until I was eighteen years old. One of the things that really stuck out to me was meeting notes from my seventh grade language arts teacher, Peggy. Better expression in written vs. verbal. More sophisticated style of writing. Not good with being caught off guard. Interacts better with adults. Gets frustrated in groups since they are fooling around and she is so concerned with her grades. Kids aren't patient waiting for her to respond. Struggles with reading comprehension. Getting a bit better advocating for herself. ALL autistic traits. Thinking back to seventh grade, I had always thought very highly of Peggy. I wondered if she remembered anything else about me that would be helpful for me to know, going into an autism evaluation. I knew that she no longer worked in the Shrewsbury schools, but teachers' contact information is usually readily available online. I looked Peggy up & I wrote her an email explaining my lifelong difficulties & how they led to an impending autism diagnosis. I attached a scanned copy of the meeting notes to the email, as well. However, since at this time, I had been a student in her classroom just over eighteen years ago & I hadn't seen or spoken to her in at least fifteen years, I had this underlying fear that she wouldn't remember who I was. I felt like I was a fly on the wall in school, barely saying a word & blending in with the background. I knew she'd had a lot of students since then & I thought I was easy to forget. Spilling my guts out to her only for her to not remember me would've been SO utterly embarrassing. This was in early August of 2022, by the way. It was only a couple of days before I heard back from Peggy & I was beyond relieved to know that she absolutely did remember me. Peggy sounded so delighted to hear from me, too. She described me as a very kind, shy, reserved student (with black-framed glasses if I recall correctly), but she admitted that she didn't think she had much more detail to give me. However, she did offer to chat by phone. And I eagerly took her up on that. If we chatted on the phone, I might be able to foster another connection with a caring & a supportive person & I really felt like that was exactly what I needed because like many autistic people, my life was extremely isolating. This blog post is about my interactions with Peggy & how her kindness & her compassion have changed my life. Peggy didn't know this going in, but I had a lot going on in my life at the time I reached out to her, most of it not even having to do with autism. Back in 2015, my maternal grandpa had a debilitating stroke that left one side of his body without feeling & completely took away his ability to process language (this is known as global aphasia). I unfortunately did not grieve the stroke properly & still to this day, I am in denial that it ever happened in the first place. Now that I know I'm autistic, this makes total sense as we do not grieve in the same way that neurotypicals do. My grandma was his devoted caregiver ever since. The year prior to when I connected with Peggy, my grandparents relocated to Shrewsbury from California because my grandma was dying from tongue cancer. She lived here in Shrewsbury for just two & a half months before succumbing to the disease (six months earlier than expected). While I never had much of a relationship with my grandma, watching my grandpa grieve the love of his life for over sixty years & worrying everyday that he would die of a broken heart was the hardest thing I have ever had to do. At the time I had reached out to Peggy, we had recently passed the one-year mark of my grandma's passing. I was also still getting into the groove of being a secondary caregiver to my grandpa. Due to the brain damage caused by his stroke, my grandpa would often say & do things that hurt me tremendously. No matter how much I tried to remind myself that my able-minded grandpa would never say or do such things, I just couldn't get the hurt to go away. This was particularly difficult for me to deal with because my grandpa & I have always been incredibly close. His hurtful actions were a complete one-eighty from how he'd treated me for the first twenty-five years of my life. All of these things would be difficult for anyone to cope with, but when you're autistic, you're handed a plethora of challenges in life that allistic, or non-autistic people have the privilege of never having to experience. And it's those challenges that make dealing with things like this significantly more difficult. Keep in mind that I didn't know that I was autistic when all of the above events actually happened, so I didn't understand why I reacted like this, why I reacted completely differently from the rest of my family. Ever since I was a young child; I have yearned for my grandparents to live close by & I was so, SO happy to finally have that; but now that I did, my life had become a complete circus. It's something you can't understand without living it.
On the autism forefront, just a couple months ago, I had learned that the reason why I have struggled so much throughout my life was because I was living with undiagnosed autism. It was the reason why:
That first phone conversation I had with Peggy was a breath of fresh air. Back when I was her student, I remember her being really easy to talk to & that was still the case. I filled her in on a lot of things, many of those things being things that hardly anyone knows about me, things that I'm ashamed of. The fact that I even felt comfortable enough to fill her in on those things, after all this time, speaks volumes about Peggy's character, the person she is; especially since I've always felt like I need to protect myself from people; I've always been afraid to show the real me. The way Peggy reacted to the things I told her was really, really comforting. She really took the time to stop & to listen to what I had to say & she didn't make me feel judged, guilty, or like I had done anything wrong. Every time I mentioned how something made me feel, whether it was a positive or a negative emotion, she validated it. And if she suggested something that I didn't think would work, I would explain why, & that was totally okay with her, too. She also told me how much she admired my courage in reaching out to her & that she was here for me. Having that conversation with Peggy gave me the courage to reach out to many of my other former teachers, as well. And while some of those other teachers gave me much more detailed insight than what Peggy could offer me; a few even telling me that an autism diagnosis would absolutely not surprise them; it was Peggy's kindness, support, time, & most of all, her compassion that made the biggest difference to me. That was what I needed more than anything else in the world. As I had other conversations with Peggy later on, she felt that she could no longer offer me the kind of support I needed. Her experience was with adolescents & I was an adult with adult problems looking into adult resources (which I now know are scarce). However, I can tell you that this is absolutely NOT the case at all. I have gone my entire life feeling like when I talk, NO ONE hears me & my feelings don't matter. Sadly, these are commonalities among autistic people. Peggy was the first person I talked to in many, many, many YEARS who really made me feel like she heard what I had to say & she valued my opinion. Plus, she was so, so, SO kind. And she was so incredibly compassionate, too. I have lived a lifetime of people being unkind to me; being critical of everything I do or say, everything I don't do or say, every facial expression I make or don't make. So, it's extra noticeable when someone IS kind; when someone accepts me as I am; when someone ISN'T judgmental; when someone really, truly CARES. When I looked Peggy up to make that first contact & I discovered that she was no longer a language arts teacher, but she was a special education teacher, I wasn't surprised. The notes that she made about me were much more insightful & helpful than the notes I came across from every single one of my other former teachers. Every single one of Peggy's notes was so SPOT ON, about me, AND about an autistic middle school girl. However, after having the interactions with Peggy that I had, I really, truly feel that special education was what she was meant to do with her life; it was her calling. The kids in her classroom are SO lucky to have her. I know she's changing their lives because she's changed mine & it's been twenty years now since I've been her student. (Typing that out makes me feel so old!) More recently, a couple weeks ago, Peggy's mom passed away. When I found out about her family's loss, I knew I needed to go to the visitation. While I've tried to thank Peggy for what she's done for me numerous times before, I didn't think I got my message across effectively enough. There was no better way to thank her, to tell her how much I appreciate her than by going to the visitation to support her & her family during their time of grief. While I was still waiting in line, Peggy caught my eye & gave me a reassuring smile, totally calming my nerves. I knew that the only reason she recognized me was because I had sent her a recent photo of myself back when I originally connected with her. (I look A LOT different now than I did when she knew me in middle school.) That day, during what had to have been one of the most difficult times in Peggy's life, between small actions she was taking & things she said, Peggy was still blowing me away with her kindness & her compassion. When I spoke with her in the receiving line, Peggy asked me about how things were progressing. The fact that she continued to show me so much care & concern while she was grieving the loss of her mom, once again spoke volumes about the absolutely wonderful person Peggy is. As much as I wanted to express the great frustration I was feeling due to things moving slower than molasses, as well as some of the resource people I was working with not only not seeming to know how to help a late-diagnosed autistic woman like myself, but actually making things worse; I didn't. There was a line of people a mile long behind me, all waiting to talk to Peggy & her siblings. Plus, I wasn't there to talk about my personal difficulties. I was there to give her my condolences, my love, my compassion, & my support; things that she had given me a couple years earlier that meant so, SO much to me. I really, REALLY hope that I'll have the chance to fill her in on those things & more one day, at a much quieter time, when I'm not feeling like I need to give her MY support. A few days earlier, when I mentioned to my mom that I was going to go to this visitation, she told me I was very brave for going alone. (This was the first time I had ever been to, or even thought about going to visiting hours by myself-- the couple other times I had been to visiting hours, my family was with me.) In my mind though, I had no choice other than to go to this. I knew that Peggy would never expect me to be there, but Peggy made such a big impact on me recently that I really felt like I needed to go. I am SO quiet; I have a lot of anxiety when it comes to social situations, especially with people I don't know; & I'm someone who really struggles with coming out of my comfort zone. But, when I feel this strongly about something, I do it. And I was SO glad I did. When I talked to Peggy about why I wanted to be there to support her & her family & what an impact she'd made on me, I knew she was really touched by my presence. And that really warmed my heart. So, as I wrap up this very long blog post, why am I telling you all of this? Well, it's because I think you can learn a lot from what Peggy did. What she did is a very good illustration of how doing something so simple can really turn someone's whole life around. When I reached out to Peggy, I was hoping for a little bit of insight, but I got something so much more meaningful instead. She was so unbelievably kind & compassionate, giving me her time & a listening ear. Things that I so desperately needed. And that made such an enormous difference to me in the lonely world that I was living in. 💙 During a recent family birthday dinner, my mom's cousin's husband made a comment about the fact that I probably didn't cry much as a baby or as a young child. The truth is, though, that that couldn't be further from the truth. In fact, as my dad told him, I was a very colicky baby with quite a loud cry for the first three months of my life. I remember family friends, neighbors, & some family making similar comments to both my parents & me ever since I was a little girl. We could always see their point because on the outside, I was a quiet, well-behaved, polite little girl who was comfortable interacting with adults. No, I didn't know how to start or keep a conversation going, but as long as I was talking to someone who could do that for me, that wasn't a problem. This is also often the reason why autistic girls who are now in their twenties & older are often not diagnosed until adulthood, if they are diagnosed at all. Little autistic girls often acted just like how I did growing up. They tended to be quiet, not cause trouble, did as they were told, & interacted well with adults. They were what my parents' friends would call a dream child. On the other hand, little autistic boys tended to be loud, troublemakers, disruptive, & had difficulty listening. Because of this, the parents & the teachers of these boys saw their behavior as problematic, which pushed them to get them evaluated for & diagnosed with autism spectrum disorder. The Girl Wearing The Mask: I have been told countless times by my parents' friends, particularly by the ones who have sons & no daughters, that they wished that they had a daughter just like me. I mean, I was the perfect child after all. A quiet girl who never caused any trouble. What else could a parent want? Growing up in a neighborhood full of boys, I remember sitting on my next-door neighbor's front steps, helping her pull dead flowers out of her large flowerpot while she braided my hair. I had the hair she so badly wanted to play with before her daughter was born. 😜 Given that picture I just painted for you, from the outside, I looked like I was any parent's dream child, so it was abundantly clear to me why my family's family & friends would think that raising a girl like me was easy. When comments like that were made to me, I just smiled & nodded my head, thinking to myself that they don't know what my home & school life was really like. The struggles I went through day in & day out. The worry I caused my parents. The struggles & worry that now make so much sense with an autism diagnosis. The Girl Behind The Mask:
Home Life: I experienced very intense dizzy spells when I was an infant & again from when I was six until I was seventeen. A big part of my & my family's life when I was growing up was revolved around preventing me from experiencing dizziness, or at least preventing dizzy spells from coming on when I was outside of our home. I remember the traumatic details of it so vividly that it's as if it is happening right now. I would be lying in bed & I would feel like the entire world was going round & round. The world felt like it was spinning so fast all around me, frightening me more than I've ever been frightened before. I remember screaming & crying at the top of my lungs & gripping my dad's hands for dear life. Nothing my parents could do or say would help. Nothing helped other than a full night's sleep. I was always told to try to go to sleep when this happened, but I never could unless it was actually bedtime. Yes, it was just as bad as I'm making it seem. If you would like to read more about my experiences with dizzy spells & my very intense fear of being dizzy, I go into even more detail about this in my previous blog posts about the coronavirus pandemic, about vestibular processing, & about vestibular overload. While I'm still very prone to dizziness to this day, it is such a relief that it no longer affects me like it once did. Due to this trauma I faced when I was growing up, feeling dizzy continues to be one of my top fears. So, I still live my life in a way where I do everything I can to prevent feeling even slightly dizzy. I know what my triggers are, I am very aware of my body & how certain things make me feel, & I have coping mechanisms to help the feeling of dizziness be more manageable. This is one of the reasons why when I drink alcoholic beverages, as soon as I start feeling like there is alcohol inside of my body, I stop drinking. The happy & relaxed feeling that you get when you drink is quite frightening for me & is something I want to do everything in my power to avoid. School Life: Academically: I couldn't learn like other students my age could & my very observant fourth grade teacher picked up on it, suggesting to my parents that they get me evaluated for learning disabilities. When I was ten, I was diagnosed with a nonverbal learning disability & processing speed difficulties. I now know that this was a misdiagnosis because many of the symptoms of nonverbal learning disabilities are the same as the traits an autistic child might have. Girls of my ability level were just not being diagnosed with autism back then. When I was in fifth grade, my parents took me into Boston to have further learning disability testing done. The results showed pretty severe deficits, which ended up being caused by a medication my neurologist prescribed me for my dizzy spells (discussed above ↑), which doctors believed was either a migraine or a seizure variant. My parents were super upset because this testing was very expensive & was not at all helpful. Unfortunately, this particular medication had no impact on the frequency or on the severity of my dizzy spells either. Socially: Because I wasn't well-liked by my peers, I was bullied pretty severely from the time I was in first grade until I was a college senior. This is a commonality among us autistics. Every autistic child & every autistic adult you talk to will likely have something to say about bullying. Knowing that I have always caused my parents extra worry, I tried to minimize the pain that I was experiencing in front of them. I think this is a lot of the reason why the effects of the bullying still have a profound effect on me to this day. Even at that young age, I was trying to be the best daughter I could be. 💙 Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
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. No child wants summer vacation to end & to go back to school. I mean, who wants that?! But, I also believe that the term, first day of school jitters, is much too mild to accurately describe my experiences & emotions. Everyone dreads when that day rolls around every year, but I have always felt that my anxiety about that day was many, many, MANY levels above everyone else's. The anxiety, the stomach aches, the panic, the nausea, the fear, the dizziness, & a plethora of other emotions & symptoms can really just be summed up into one word: trauma. Yes, school was a traumatic experience for me from start to finish & the trauma only got worse with age. Autism & Trauma: Every autistic person, no matter how old (s)he is has experienced trauma at some point in his or her life. No, it's not the type of trauma you're probably envisioning when I say that word. Being bullied on a daily basis & constantly being left out can certainly cause the same types of consequences on a person as going to war, witnessing someone get murdered, or having an abusive spouse would. It just takes a longer amount of time to do its damage. This is one of the reasons why it is crucial to diagnose autism as early on in the child's life as possible. So that you can do as much as you can to stop the trauma & the damage it will cause once the autistic child grows up. Academics Were Easy!: I wasn't your stereotypically gifted autistic child. In fact, I struggled with math until I got to middle school. But, the academics were STILL the easy part of school for me. It was every other thing that naturally came along with it that was so painfully difficult. There were two main reasons why: bullying & friendships. Bullying: Every autistic child & every autistic adult you talk to will have something to say about bullying in school. Many autistic adults will have things to say about bullying &/or mistreatment in the workplace, as well. This is what I remember about bullying:
The effects of the bullying is the reason why it takes me such a long time to trust someone even now, as an adult. I know that this is due to the trauma I experienced, which I explained above. I think that part of this is also probably because I never voiced the pain I was experiencing to my parents. I have always felt that I caused them extra worry & I didn't want to add to it even more. I also see police officers as adult bullies because almost every one of the boys who bullied me in high school were going to study criminal justice in college to become a police officer. That makes police officers absolutely terrifying. When I look at a police officer, I see a bully who wants to hurt me, not someone who will protect me. Friendships:
Miscellaneous Difficulties:
These are the reasons why I am so glad I am no longer in school. When I was at my neighbor Patty's house this past winter talking to her about my experiences growing up as an undiagnosed autistic child, one of the questions she asked me was, "How was school?" I could've gone on for hours telling her about the problems I had in school. This is the first of a series of blog posts that answer that very question. While this topic is a painful & vulnerable one, I have a lot to say about it, so it is a topic that I have been very excited to write about. 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:
When I was in third grade, my mom got a job as a classroom aide at the elementary school I attended. And that's where she still works. Today, when she came home from work, my mom told us that one of the school busses was thirty minutes late this morning. One of the boys at her school told my mom that the reason why that bus was so late was because the children on the bus were so poorly behaved that the driver had to pull off the road to assign seats. Later on that day, my mom found out from one of the teachers she works with that there is also some bullying going on, on that same bus. The bullying had gotten so bad for a certain boy that his mom is afraid of sending him to school on the bus. Another boy does things to him, like pour his water from his water bottle onto this poor boy's head! I always try to link the things that happen in my everyday life to my experiences as an autistic woman. So, I wanted to take this as an opportunity to tell you about what it was like to ride the bus to school as an autistic student, long before I knew I was autistic. From the title of this blog post, you probably already know that I absolutely HATED riding the bus to school. Why I HATED Riding The Bus To School: I Was Afraid Of Getting On The Bus: When the bus pulled up to the bus stop, all the children ran to the bus because they wanted to get the BEST seat. The running children scared me. I have struggled with my gross motor abilities my entire life (this is a commonality among autistic people/children), so every day when it was time to get on the bus, I thought I was going to get trampled & injured from running children. I could feel a rush of adrenaline running through my body every time it was time to get on the bus. Being someone who has always avoided adrenaline-inducing activities, this felt absolutely terrible! I Usually Had No One To Sit With: This is a pretty self-explanatory reason, but when you're autistic, you tend to have trouble making & keeping friends. In the beginning of the school year, I would sometimes have a neighborhood girl to sit with, but as the year went on, that girl went on to make her own friends who she wanted to sit with on the bus. And where did that leave me? Alone of course. Not only was it embarrassing, but it made me so sad that no one wanted to be my friend. There Were Older Children On The Bus: There's a big difference between a first grader & a fifth grader. Whenever I was on the young end of whatever school I was in, I felt like being around older children was dangerous. I mean, I even felt like it was dangerous being around children my own age, so of course being around older children was even more frightening! One Of My Bus Drivers Was Scary: My middle school bus driver was crazy, mean, & scary! She often started driving before all the students were seated. Because of my gross motor difficulties, this was terrifying for me. She would also do things like yell at whoever had a dirty water bottle on the floor by his/her seat, being seemingly unaware that water bottles roll when the bus moves, so whoever she was yelling at likely wasn't responsible for leaving their dirty water bottle on the bus. It Was Loud: I didn't have noise sensitivities like the typical autistic student did, but I was a calm & quiet girl who preferred calm & quiet environments, rather than environments with excitable, yelling children. I Was Afraid Of Getting Off The Bus: Again, children moved much too quickly for my comfort level. Because of my gross motor difficulties, I have always had to take stairs slowly & cautiously. However, when it was time to get off the bus, I thought I was going to get trampled & injured from running children. I could feel adrenaline rushing through my body every time it was time to get off the bus. Having been an adrenaline-avoider my entire life, this felt absolutely terrible! I Was Afraid Of Missing The Bus: Again, because of my gross motor difficulties, it was hard for me to get to the bus at the end of the day quickly enough. This was particularly stressful in high school, when all of the busses were lined up at the front of the school simultaneously rather than being called over the loud speaker. There was never enough time for me to gather everything I needed in order to do my homework that night AND make it to the bus on time without stressing. If I were to miss the bus in high school, it would be particularly bad because it would mean that I would need to wait a whole extra hour & a half at the school in order for my mom to pick me up to go home, since she didn't get out of work until three o’clock & the high school was a twenty minute drive away. I don't think that ever happened, but the idea of it EVER happening terrified me. Just being in that school drained every ounce of energy I had that I couldn't wait to run away from the school building at the end of the day! (I'll tell you more about my experiences with school in a future blog post.) This is one of the many reasons why I was so relieved when I got my driver's license. Why I Never Struggled With Bullying On The School Bus:
I experienced very INTENSE bullying in school, but never had any problems with bullying while on the bus. The short reason why is simply because I always sat in the first few seats of the bus. The exact place where no one ever wants to sit on a school bus. If someone had ever hypothetically forced me to sit in the back of the bus, I would've been absolutely terrified because that's where the bullies sat. Even the kids who sat back there who were not bullies tended to be friends with them. The wild, loud, obnoxious athletes sat in the back of the bus. I generally didn't like athletes, unless they were runners, were part of the track team, or were tennis players. I wanted to do everything I could to stay away from bullies & everyone who associated themselves with them. Because I sat in the front of the bus, that was the only part of the day that bullies didn't bother me. They didn't go out of their way to bother the quiet, loner girl sitting in the front of the bus because she didn't want to be bothered by the bullies, among a plethora of other reasons. I was so glad about that. I sat in the front of the bus from when I was in kindergarten until I stopped taking the bus, when I was a high school sophomore. I Wished My Mom Drove Me To School! Within the past few months, I made a comment to my mom about how I hated riding the bus to school & I wished she drove me. I never understood why I had to take the bus to school. I assumed my mom had some very good reason for not driving me to school. Or that it was just too much trouble. I have always believed that I was too much trouble & caused too much worry. To my surprise, my mom never knew how much I hated riding the bus to school & she told me that she would've driven me if I had asked her to, particularly when I was in elementary school & I attended the same school she worked at. I wish I had known this twenty-five years ago. I have always been a meek person, as a child AND as an adult, both inside & outside of my family. I was really pushed by my special education teacher to advocate for myself when I was a junior & a senior in high school, in preparation for college, but speaking up for myself is & always had been difficult for me, particularly in my younger years. I know that is also likely why that despite all of the intense bullying that I endured, I never told anyone how painful it was, how much it bothered me. Issues I dealt with while I was in high school, & even while I was in middle school & while I was in elementary school are still affecting me well into my thirties. I'll share more about my experiences being a victim of such intense bullying in a future blog post. 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. You probably know that the five senses are sight, hearing, touch, smell, & taste, but did you know that there are actually eight senses? The three hidden senses are: The Vestibular Sense: Vestibular receptors, located in our inner ears, help us process movement & balance. The vestibular system helps us to distinguish between speed & the direction of movement. Many autistic people are either vestibular under- or over-responders. People who are vestibular under-responders seek intense or prolonged vestibular stimulation & may enjoy frequent rocking, swinging, bouncing, jumping, or other activities involving intense movement. People who are vestibular over-responders may react negatively to a wide range of vestibular input. They are often prone to motion sickness & have anxiety during activities that involve movement through space, such as walking down the stairs. They also tend to struggle with body control & coordination. I am someone who struggles a great deal with vestibular sensitivities. This is why numerous times throughout this blog, I have referred to vestibular processing issues & anxiety around certain things causing dizziness. Because I keep referring to vestibular sensitivities, I thought it would be good to take a step back & actually explain what I mean by that. The Proprioception Sense: Proprioception receptors, located in our muscles & joints, provide information about where our bodies are in space. This system impacts our sense of body awareness & coordination. It also helps to create smooth movement. Many autistic people are either proprioception under- or over-responders. People who are proprioception under-responders struggle with knowing how much pressure to apply. They may break pencils or use too much pressure when shaking someone’s hand, for example. They may enjoy jumping, bumping, & crashing into people & objects. They tend to be unaware of safety & can be accident-prone. Children tend to prefer rough play & seem to be constantly wrestling with siblings or other children. They tend to stand too close to others & touch them without permission. And they may crave pressure & bear hugs. People who are proprioception over-responders may are easily overwhelmed by touch & movement. They tend to avoid physical contact, like hugs & other types of contact or pressure. They also tend to become anxious in crowded spaces or when standing close to others. Children who are proprioception over-responders tend to avoid physical play & appear timid around others. They also may dislike slides, swings, other playground equipment, & phys ed class in school. I also struggle with proprioception sensitivities, but because I am now an adult, these issues are much less bothersome now than they were when I was a child. The Interoception Sense: Interoception receptors, located on our internal organs, provide us with information about our internal body & emotional states. These receptors tell us when we're hungry, thirsty, hot, cold, in pain, or needing to use the bathroom. They also tell us if we're happy, sad, or anxious. People who are interoception under-responders may be unaware of pain & temperature signals, not know when they're hungry or thirsty, be unaware of the urge to eliminate until it is urgent, or have alexithymia, otherwise known as the inability to identify his or her own emotions. People who are interoception over-responders may always be hungry, thirsty, or having to use the bathroom. They also tend to experience more pain & pain lasts longer. It is common for over-responders to have frequent sicknesses because even the mildest of illnesses cause them to feel terrible. Stereotypical Sensory Sensitivities:
In movies & on tv, you'll notice that autistic characters are often very sensitive to light & sound. Because of this, they often wear sunglasses, noise-canceling headphones, or ear plugs to relieve themselves from intense sensory input. Autistic people also tend to be very sensitive to touch, where they can only tolerate clothing made from certain types of fabric & they cannot tolerate tags in their clothing or seams in their socks. It is also very common for autistic people to dislike being touched. Lastly, autistic people commonly dislike very strong flavors in the foods they eat. They tend to not like spicy, sour, or minty food. The beige food diet is common for autistic people. People who prefer this diet stick to eating only food that is beige in color, such as plain pasta, bread, & chicken nuggets. My Sensory Sensitivities: I don't experience this world as a stereotypical autistic person, in the sensory sense. Most sensory sensitivities that are common to autistic people are not issues for me. In fact, I was not aware of many of my sensory sensitivities being at all related to autism until I began learning more about autism, as I was pursuing a diagnosis. Until pretty recently, I thought that what I was experiencing were quirks in my likes, dislikes, & behavior. The sense that is definitely the most sensitive & bothersome for me is the vestibular sense. Sight: I do not have any visual sensitivities. Bright lights do not bother me, like they tend to bother the stereotypical autistic person. However, when I was growing up, certain frequencies of lighting would bother me because they caused dizzy spells, which you can read more about in my previous blog post about how the coronavirus pandemic turned me into a "normal" person. For example, the first time I ever successfully ate in a Rainforest Cafe, I was in my twenties. My dad & I were visiting family in Texas & we were in San Antonio for the day. We wanted to eat lunch along the River Walk & the restaurant everyone decided to eat at was the Rainforest Cafe. Something about the atmosphere in that restaurant caused dizzy spells because this was the first time I had ever eaten in that restaurant without getting sick. Because of my history with that restaurant, both my dad & I had anxiety about eating in there, but it was a success! I think it was probably the Rainforest Cafe's lighting that was the issue, but I don't know for sure. Also, while I don't have issues with bright lights, I do have issues with blinking or flashing lights & lights that are moving, particularly in circles. That is more of a vestibular issue though, which I'll discuss more below. Hearing: I do not have any auditory sensitivities. In fact, I really love listening to loud music! Touch: I do not have any of the stereotypical tactile sensitivities involving the clothing I wear. I can generally wear all fabrics of clothing & I am not bothered by tags or by the seams in my socks. I am sensitive to the sheets on my bed touching my feet though, so I have to sleep with socks on. However, as I mentioned in my first blog post, I am very sensitive to water touching me, particularly on my face & in my eyes. Because of that, I can't wash my face with soap in the sink. I have to use a washcloth instead. I also dislike the feeling of breezes. For example, I don't drive with the windows open & I actually point the vents away from the driver's seat in my car. I am also picky about who touches me & how I'm touched. I love experiencing physical affection from family & people I'm close with. However, hugging people that I do not have a certain level of established comfort with is uncomfortable. I also greatly prefer hugs over kisses & dislike romantic touch. I remember that on the first day of school when I was a sophomore in high school, my biology teacher put her hand on my shoulder as I was walking to my desk. I disliked that so much that I couldn't stop thinking about that for the whole rest of the year. If she had done that after I had an established relationship with her, I wouldn't have thought anything of it & it probably would've even made me feel good. But, because it was the first day of school & I didn't have a relationship with this teacher, it really bothered me. Smell: I do not have any olfactory sensitivities. Taste: The gustatory sense is the one sense where I am a stereotypical autistic person. I dislike strong flavors of food & I tend to stay away from spicy & sour food. If I'm eating in a restaurant & the waitress asks me if I would like a lemon in my water, I always decline it. In cases where I am not asked whether or not I would like a lemon & my water arrives with a lemon in the glass, I always take the lemon out. I also don't like mint, even in chocolate or in ice cream! I tolerate it in toothpaste though. Lastly, I really like my drinks cold (with A LOT of ice) & my food hot (temperature-wise). Vestibular: The vestibular sense is the sense that is by far the most sensitive & interferes with my daily living the most. In fact, that is why the graphic I chose to use for this blog post is supposed to resemble spinning. I am definitely a vestibular over-responder & I have a lot of fears that are all caused by this sensitivity. I listed many of these fears in my previous blog post about how the coronavirus pandemic turned me into a "normal" person. I could write a novel about everything that causes dizziness, so I tried to pick the things that stuck out the most in my mind. I know what I generally can & can't handle, so I either try to avoid certain things or I use coping mechanisms to deal with certain situations that most people would think nothing of. This is also why I don't know how to ride a bike. Embarrassing, but true. An example of a coping mechanism I use is how I deal with glass elevators, which really bother me. I have learned to find a screw or another stationary object inside the elevator to focus my eyes on until the elevator stops moving. An example of a situation that caused vestibular oversensitivity took place at a family wedding when I was in middle school. My mom's cousin's husband wanted to dance with me & took me to the dance floor. I remember really struggling with that dance because he didn't know to not spin me & I wasn't comfortable enough with him to tell him to stop. My grandpa, who I call Gung-Gung, took me to dance right afterwards & he didn't spin me because he knew how sensitive I was. The difference & the relief that I experienced when I danced with my Gung-Gung was phenomenal. Proprioception: I have significant proprioception sensitivities, but luckily, these things no longer affect my adult life. When I was a child, I felt unsafe on playground & climbing equipment if other children were also using it. I was also unable to engage in age-appropriate physical play with other children. Phys ed was traumatizing. In fact, what I remember about my elementary school phys ed teacher is that she scolded me for running away from a fast-moving soccer ball & she didn't scold my peers for laughing at me. I was truly terrified of that ball & I was only doing what I could do to protect myself. In high school, the transition between classes & the transition from class to the buses or the parking lot was terrifying because I thought I was going to get hurt from navigating down a staircase among a fast-moving stampede of teenagers. Interoception: I do not have significant issues with interoception, but I occasionally will experience alexithymia. I don't have any trouble identifying intense emotions, but I sometimes will have difficulty distinguishing between closely-related emotions or more neural emotions. 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. 💝 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. Autism disclosure is a very personal issue that people within the autistic community are very divided on. Some people are very open about it & tell anyone & everyone. Others disclose in stages, disclosing first to their innermost circle, working out as more & more comfort is reached. Some people like to tell only their closest friends & family. And lastly, there are the people who like to keep their autism completely to themselves. MY Autism Disclosure Process: I personally fall into the second group of people listed above, being someone who disclosed in stages. This is how I went about it. Please keep in mind, there is no right or wrong way to disclose your autism & disclosing your autism isn't something you have to do at all.
WHY I Chose To Disclose My Autism Diagnosis: At first, I chose to disclose be better understood, accepted, & supported by family & close friends, as well as people who I interact with on a regular basis. I later disclosed to an even larger group of people with the purpose of educating them in effort to spread more autism acceptance & awareness in my community. Thinking About Disclosing YOUR Autism Diagnosis?:
Remember, there's no right or wrong way to disclose your autism diagnosis & you absolutely don't have to do it the way I did it. Some Things To Keep In Mind:
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. In my previous blog post about Autism Speaks, I briefly mentioned that my life would be so much easier I wasn't autistic & that I wish I wasn't autistic, but I didn't get into why I feel that way. Let's take a moment to get into that now. Why I Wish I Wasn't Autistic:
I know I am not like most autistic people, but this is truly how I feel about being autistic & how I think being autistic hinders my life. I would be elated if there was a cure for autism, or even if there was a medication (with minimal side effects) I could take that could get rid of my autistic traits, but, at the same time, I know that that isn't going to happen. At least not in my lifetime. I am someone who was brought up to be accepting of all people: different religions, different backgrounds, different cultures, different disabilities, etc. So, whether you are autistic or not, all I ask is that you are accepting of me regardless of whether you think similarly or differently from me. I am using Splashed With Water as a way to educate, but also to share what it's like to be an autistic woman & thinking these thoughts is part of what being an autistic woman is like for me. Now that we've covered why I DO want a cure for autism, let's talk about why most autistics disagree with me.
Why Autistics Don't Want A Cure For Autism:
You'll find that throughout this blog, my personal opinion often differs from the opinion of the autistic community as a whole. When that happens, I'll do my best to cover both sides. I hope doing it this way was helpful to you. This also shows you that all autistic people are different from one another, just like how all neurotypical people are different from one another. 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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