Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people.
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Throughout this blog, I have briefly mentioned how harmful ABA therapy is to autistic people, but I haven't gone into a whole lot of detail regarding what ABA therapy actually is & WHY it's such a problem. So, I'd like to take a moment right now to talk about that. Now, I'm gonna be upfront with you by telling you that I'm absolutely no ABA expert & I've had to do a lot of research in order to have enough content to write about in this blog post. What IS ABA Therapy? ABA stands for "applied behavior analysis" & simply put, it is a behavioral therapy specifically designed for autistic children. The History Of ABA Therapy: The Lovaas Method, later known as Applied Behavior Analysis, was developed by a man named Dr. Ole’ Ivar Lovaas in the 1960s. The premise was to use behaviorism to "treat" autistic individuals. ABA therapy focuses purely on behaviors with a goal to make the autistic child "indistinguishable from peers." When Dr. Ole’ Ivar Lovaas was practicing ABA therapy, he used rewards for desirable behaviors, as well as abusive punishments (including electric shock) for undesirable behaviors. The Problems With ABA Therapy:
There is SO MUCH controversy regarding ABA therapy in the autism community. While the majority of autistic individuals passionately dislike every aspect of this type of therapy & speak out against it; their parents, their teachers, & their medical professionals often disagree; calling it a miracle that "cured" their child of her or his autism or made significant improvements to their child's autism. Well, that simply isn't the case at all. And this is why.
What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
WELCOME to the first Autism Acceptance Month blog post of 2024! Today, I wanted to take a few steps back & go over some autism terms & what they mean. I use many of these terms throughout my blog & I try to provide definitions as I write. It's always good to take the time to pause & review what some of these terms mean though. And there's no better time to do that than when we're kicking off Autism Acceptance Month! Important Autism Terms & Definitions:
I am typically reminded several times a week that I am autistic. What I mean by that is things are constantly happening in my life that I know wouldn't happen if I was allistic, or if I wasn't autistic. When these things happen to me, I tend to say in my head, "[This particular thing] happened because I'm autistic." & then I feel all sad & mopey on the inside. I really wish it wasn't this way because it's part of what makes being autistic feel so disabling. But, I blog about my life. And this is the type of thing I deal with every day. This my real life that I'm sharing with you, so here we go. This is the story of how purchasing a new winter coat reminded me that I am in fact, autistic. All winter long, the threads in my winter coat have been repeatedly breaking, leaving large gaping holes behind. Rather than continuously repairing the damage, I decided that it was time for a new coat. This coat is very old, anyway. The best time to purchase a winter coat is at the end of the season, when everything is on clearance, so now is the PERFECT time for a new one. The task of purchasing a new coat that I will wear almost daily for almost half the year is overwhelming to say the least, especially for an autistic person such as myself. These are the three main reasons why:
The Return Process:
This is where it gets really complicated. I purchased these two coats from Walmart's online marketplace. So, it wasn't actually Walmart who I bought the coats from, but I could return it there. I kept the deep purple coat in my car for about a week & a half, so that I wouldn't have to remember about it on the day I actually needed it. Walmart is a close drive for me, but one of my dog walking clients lives less than two miles from Walmart, so I wanted to return this coat on a day that I didn't have to go anywhere after walking this particular client's dog. It took twelve days before I had time to go to Walmart after walking this client's dog. My entire life is based around doing things in the most efficient manner, so that whatever I do outside of my home takes up the least amount of time possible. Because of my depleted energy levels, as well as my executive function difficulties, doing all my errands on a single day when I'm already in the area for another reason (such as visiting a client's dog or cat) is what works best for me. Anyway, after parking my car, I took the deep purple coat (still in the bag it was shipped in), into Walmart & found the customer service desk. The older woman who helped me was incredibly grouchy. Right away, she complained about the size of the coat (what winter coat isn't large?!) & to be completely honest, I was pretty intimidated & frightened by her. I showed her the barcode on my phone that was connected to the coat I wanted to return & she scanned it. But, I was really confused because she kept making comments about how the coat I was returning wasn't red. I never purchased or received any red coats, so I had no idea what she was talking about. I was scared of her though, so I just let her do her thing & I didn't speak up. She printed out a receipt with the coat's tracking number on it & the amount that I would be refunded. I looked the receipt over as I was walking away because I never trust that people are doing their jobs correctly. I was glad that I checked because the refund she issued me was for the incorrect amount. The coat I was returning was $5 more than the coat I was keeping. And the refund I received was for the coat that was at home! I went back to the customer service counter to ask her about it & she told me that the coat I gave her wasn't red. It was then that I realized why she had been talking about a red coat. 💡 The packing slip inside the shipping bag said that I purchased a red coat & a purple coat. Red wasn't even a color option for the coat I had purchased. I was SO confused by this! ⁉️ I had never even looked at the packing slip because I received exactly what I ordered. The woman returned the purple coat (which was at home) because the coat I gave her wasn't red. When I showed her the picture of the coat on my phone with the price I paid for it, she yelled at me & told me I should've shown her that from the very beginning. I thought I did though because I showed her the barcode, which she scanned & I would think that the barcode would tell the customer service person which coat I was returning & how much to refund. ⁉️⁉️ The only reason I didn't question the customer service woman originally was because I was intimidated & scared. I have lived my entire life having to endure pervasive mistreatment from everyone around me & I am quite certain that it has caused post-traumatic stress disorder, something that more than 40% of autistic individuals struggle with. The reason I didn't speak up was because I was simply autistic & afraid. In the end, a much kinder & younger woman (who was also working behind the customer service desk) called the seller I had purchased the coats from to get the remaining $5 refunded. Going to the store to return something is such a simple task, but being autistic turned it into such a big headache. And it was all because the person helping me wasn't kind. This is something that could've been avoided completely if the person helping me had exhibited kindness & had not been so intimidating. This is the type of thing that I deal with on a daily basis because I am living with autism. For those of you who are also autistic, I hope this story helps you feel less alone. And for those of you who are allistic, I hope this story helps illustrate how difficult it is to be an autistic woman living in a neurotypical world. 💙 With today being the Lunar New Year (the year of the dragon!), I just wanted spend this blog post telling you about Asian culture & autism. My mom's side of the family is of Chinese descent & while I definitely have had an American upbringing, Asian culture has had great influence over the way I was raised. In the Asian culture, you are taught from a very young age that all of your personal difficulties are to remain inside of the home. In fact, if you were to be open about your challenges in public, you would likely be thought of as a disgrace. Unfortunately, the majority of Asian Americans still have this mindset to this day. One of the times my mom taught me about this was when she talked to me about hiding the bottles of antidepressants that I was taking before my grandparents arrived for a visit (particularly because of my grandpa's background in pharmacology) in order to prevent questioning & criticism. Moments like these are probably why I have always been more comfortable confiding in my dad than my mom, both as a child & as an adult. I have always felt like the fact that I have had lifelong mental health difficulties, & now autism, is something to be ashamed of because in the Asian culture it is. Another example of this occurred many, many years ago when my grandparents took my mom & my aunt on a tour of China. I remember my mom telling me that everyone wanted to take pictures with a person in their tour group who was using crutches. The reason why? If you're using crutches or a wheelchair in China, you generally don't leave your home. So, that's not something you ever see out on public streets. Asian Americans love to pride themselves in (& even brag about) which colleges & universities they got into & their SAT scores & then later on, how successful their careers are. I remember my grandma telling me about a time in school when she cried (something I have never seen her do EVER) because she got a 98 on a test. I can't picture myself ever crying over a 98. In Asia, when students don't do well on a test, even if it was the entire class that didn't do well, it is never the teacher's fault. It is never because the teacher didn't teach the material well enough or the test was written poorly, for example. It is always because the student didn't study hard enough. When a child has a disability that makes achieving the types of academic & professional successes that Asian people strive for much more difficult, such as autism, it poses a very significant problem for the child & her or his family. Asian Americans don't have any issues asking for help when it comes to furthering their child's academics or career, but when it comes to autism, they tend to refuse help & then the child is left to suffer alone, in silence. When children are diagnosed with autism in China, they are often sent to costly private treatment centers for ABA therapy. However, while this type of therapy is the most common type of therapy for autistic children, it is an extremely traumatic type of conversion "therapy" that essentially teaches autistic children to act in ways that make allistic, or non-autistic people more comfortable. Children who have received this type of therapy often develop post traumatic stress disorder by the time they reach adulthood.
Sadly, autism is still a relatively new condition in the Asian community, with China first recognizing it as a neurological disability as recently as 2006. In fact, many Asians have heard about autistic non-Asians, but they've never encountered an autistic Asian before. This is because less than one percent of autistic Asians have been evaluated for autism, let alone are receiving support for it. The thought that ninety-nine percent of autistic Asians are undiagnosed is quite staggering. Asians are likely not diagnosed with autism because they are afraid of being a disappointment, something I felt that I was until shortly before my thirty-second birthday, when I learned that I was autistic. 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...
I had a very interesting conversation with my dad about why I've never been successful in the workplace that I'd like to tell you about. I had been sitting at the coffee table, filling out paperwork about my disabilities all afternoon & the last question stumped me: Use this space to write any additional information about why you cannot work. I had put SO much information on all of the other pages of that form explaining why I cannot work that I simply felt like I didn't have anything else to add unless I repeated myself. So, I asked my dad, "Why do you think I cannot work? I want to see if you have any other ideas that I haven't thought of already." My dad has a better understanding of me than most people do because we're so similar to each other. He took a moment to think & then said, "My impression of it is that it's because you can't handle criticism. And because of that, you work ineffectively, which then causes you to get fired." I had never thought of it that way before, but what my dad said was absolutely true. I can't handle criticism. Before we go any further though, I'd like to clarify something. It isn't that I CAN'T work because truthfully, depending on the specifics of the particular job, I CAN work. What I can't do is work for someone else, in the traditional sense. If it's a job where someone is supervising me, that's the problem. Interactions with supervisors are the biggest issue for me in the workplace. While I had never thought of it like how my dad summed it up before, supervisors criticize, whether they're doing it now or they're going to do it in the future. That's what makes me shutdown around them. Interacting with someone who is either actively criticizing me or will criticize me at some point in time causes my brain to completely shutdown. This makes it impossible for me to function, as terrible as that sounds. Total comfort & feeling like I'm not going to be criticized or judged is key in order for me to not shut down. Shutting down at work just doesn't work, supervisors don't know how to interact with me in a way that doesn't cause me to shutdown, & that's why I can't work. This blog post is about what you need to know before criticizing an autistic person, although chances are, if you're reading this, you have already done it at some point in your life. I'm gonna throw in some info about how it feels to be criticized as an autistic woman, too. Why We're So Sensitive To Criticism: Bad Experiences With Criticism: Bullying & being left out are forms of criticism. Every autistic person you talk to will have something to tell you about experiences with those two things. The teasing, the mocking, the name-calling, the fact that no one wanted to be our friend, & MORE. Both bullying & leaving us out does real harm that affects us, autistic adults, many years later. It still affects me today more than I would like to admit. The bullying I endured when I was seven all the way through my early twenties did real harm & it still haunts me to this day. As a fresh college graduate & as an adult, I was constantly criticized by my parents, as well as by other caring family members. I personally believe that Asian & Jewish families expect more from their children than all other ethnicities do. Think about the number of Asian & Jewish doctors & scientists that are out there! Because I have a Chinese mother & a Jewish father, my parents unknowingly set unrealistic expectations for me from a very young age. Once my college graduation was upon me, I quickly discovered that I couldn't live up to those expectations, but I didn't understand why. Being constantly asked if I was happy with my life (I wasn't & I'm still not) & if I worry about what will happen to me when my parents die (I did & I still do) hurt immensely. Not only that, I had no explanation & no understanding of why I couldn't get to the place I needed to be in order to meet their expectations. Living almost thirty-two years of my life feeling like I was a disappointment to my family was extraordinarily difficult. It was even more difficult that I wasn't only disappointing my family, but I was also disappointing myself because I had the same expectations of myself that my parents had of me. I certainly don't blame my parents for any of this because I know that if they had known that I was autistic all this time, those expectations wouldn't have been put on me like they were. However, feeling like I was always falling short & I was never good enough put such a damaging amount of pressure on me for so long that it still affects me to this day to the point where sometimes I forget that their expectations of me have changed since my autism diagnosis. The Criticism Is Constant: I remember being constantly criticized for my behavior ever since I was a young child. Many other autistics have had the same experiences as I have had with this. "Look at me while I'm talking!" "Why do you have that grimace on your face?" "Why are you smiling? That's not funny!" "You shouldn't have said that. You should've said this." "Your face looks funny. Are you okay?" All of the above things have been said to me numerous times throughout my life. Unfortunately, an autism diagnosis hasn't stopped these types of criticisms from happening. My behavior & every move I make have been criticized so much that I simply can't handle any more of it. We're Stressed:
Us autistic people live very high-stress lives. Things that seem so minuscule to you really stress us out. We're sensitive to a lot of things like light, noise, our physical environment, & emotions. For example, I remember a time where my mom insisted that I attend a neighborhood Christmas party. I really didn't want to go because I was expecting to watch Christmas movies in my pajamas that night & now I had to be dressed & socialize with other people. I wouldn't have had such a problem with this party if it wasn't for the fact that it came on suddenly & I had no time to mentally prepare for the fact that I had to attend this party that night. I was in college at the time, so I was definitely old enough to stay home. It just wasn't okay with my mom. The sudden change in plans caused me stress & displeasure & when I expressed that to my parents, I was criticized for how antisocial I was being. This resulted in a complete meltdown. I felt like no one cared about me that night because no one stopped to listen to my thoughts or feelings. When I eventually made it to the party, I ended up standing like a statue against a wall for the few hours we were there because the criticism I received just prior to arriving at the party made it so that I didn't have the emotional capacity to socialize with anyone. We Have Low Self-Esteem: Many autistic people, myself included, suffer from low self-esteem. This is often the result of external factors, like bullying & being left out when we were younger (discussed in more detail above↑). When we have low perceptions of ourselves, it makes us more sensitive to criticism. Low self-esteem also makes us unable to understand or interpret criticism. Even when criticism is communicated with the best of intentions, ALL criticism can make us extremely anxious, which has long-lasting effects on us, crushing our self-esteem even more. Every single time I'm criticized, I feel like I can't do anything right. In fact, I feel like that regardless of whether or not I'm criticized. I know that this is because of how much I have been criticized during the course of my life. Many other autistic people feel this way, too. Our Feelings Are Often Dismissed: I have gone through my entire life feeling like my feelings don't matter. I have always felt like when I speak up, my thoughts & feelings are brushed to the side. I've been talked over & ignored more times than I can count. This not only makes us extra sensitive to criticism, but it makes us think we're being criticized when we're not being criticized at all. What Is Rejection Sensitive Dysphoria?: Although not a clinical diagnosis, rejection sensitive dysphoria, or RSD, is when perceived rejection or failure causes so much intense emotional pain that it becomes very difficult for a person to cope with his or her feelings. Autism & RSD: Many autistic people struggle with RSD & I certainly believe I am one of them. However, this isn't an issue for every autistic person. Increased rejection & punishment for not meeting neurotypical standards puts autistic people at higher risk for experiencing RSD. Also, since autistic people often have different sensory & perceptual experiences than allistic, or non-autistic people, they often experience more intense emotions. Autistic people with strong emotional sensitivity tend to experience social & interpersonal rejection stronger than allistic people, which can increase rejection sensitivity. Complications Of RSD For Autistic People: While most people do not enjoy being rejected or criticized (I mean, who would?), RSD goes beyond simply disliking rejection. RSD is so intensely emotional & can even be physically painful. The desire to avoid this unbearable pain & discomfort often leads to increased masking behaviors, which puts the autistic person at higher risk for burnout. Additionally, RSD can trigger mental health issues in autistic people including anxiety, depression, & eating disorders. So, before you criticize an autistic person, remember that while no one likes to be criticized, criticism is often much, MUCH harder for us to take than it is for the allistic population to take. And if your criticism causes us to shut down or to act unconventionally, please treat us with love, care, & understanding. It's what we need most of all. 💙 The above was a statement my dad shared with me a couple nights ago. 🥰 All my life, my dad has been the one I could count on to say things like that to me, things that I need to hear. Let me tell you more about the background of this statement. My mom had recently made an appointment for my grandpa & herself to get the new COVID vaccine. Finally having convinced my dad to get the vaccine earlier than he had originally wanted to get it, she was trying to add him to the vaccine appointment group she had made for my grandpa & herself. That's when a thought came over me: should he really be getting the new vaccine then? My dad had been experiencing some kind of allergic reaction the past several days, so his doctor prescribed a steroid to help with the itchiness he had been experiencing. Now, this steroid helps with allergies & all kinds of autoimmune disorders. I know much more about this medication & how it works than I wish I did because one of my dogs took it many years ago, when he was very sick with a blood clotting problem. Knowing that this medication works so well by suppressing the immune system, I asked my parents about this drug before my mom added my dad to her appointment group. When you get a vaccine, you want the best immune response possible, so taking a medication that makes your immune system not work as well while you're getting a vaccine— that's probably not a good idea. My dad agreed with me, so he is holding off getting the vaccine until after the ten days on the steroid has passed & his immunity is back to normal. Out of curiosity, later on that night, I asked my dad if he would've thought of the impact of the steroid he's taking on his immune response to the new COVID vaccine on his own. He told me he definitely wouldn't have & he would've just gotten the vaccine on an earlier date, like my mom & I wanted him to. Feeling happy with myself for speaking up while trying to be humorous at the same time, I said something along the lines of, "See, sometimes having an immune- & germ-obsessed daughter can be beneficial!" If you'd like to read more about my experiences being a germaphobe, please feel free to go back & read my blog posts about how the coronavirus pandemic turned me into a "normal" person & how vestibular sensitivities effect my daily life. I then talked more about how he can thank my obsession with germs & the immune system, as well as my dog, Teddy for my knowledge about this steroid. If it wasn't for Teddy's illness, I wouldn't know so much about how this drug affects your body. That's when my dad said to me, "Everything about you is a blessing to me." No one's ever said that to me before, so my immediate reaction was that my dad was just being sarcastic again. I was sitting there talking about the immune system & my germaphobic tendencies, so hearing that that was a blessing really caught me off guard. I mean, I don't consider that a blessing to ME (it's so hard to live that way), so how could it be a blessing to someone else? Germaphobia is a BIG part of who I am. It turned out that my dad was being 100% truthful in that moment & wasn't being sarcastic at all. "Everything about you is a blessing to me." That was something I needed to hear. If you love me, tell me. If you're proud of me, tell me. If I look pretty, tell me. If I'm doing things right, tell me. If you love that design I just created, tell me. If everything about me is a blessing to you, tell me. I need to hear all those things & more. I've gone my whole life with terrible self-esteem & being super dependent on validation from others. Every positive thing you think about me: I need to know about it, I need to know how you feel. That's what keeps me going & I know that that's also why words of affirmation is my love language. What Are The Love Languages?:
The term love language refers to the way that a person prefers to express & receive love. While the term was first introduced to us by best-selling author, speaker, & marriage counselor Dr. Gary Chapman, the term is used more loosely today, referring to love that is expressed between romantic partners, family members, friends, & more. In Dr. Gary Chapman's best-selling book, The 5 Love Languages: The Secret to Love that Lasts, he proposed five specific love languages, which are:
If you'd like to learn more about the five love languages, you can visit Dr. Gary Chapman's love language website to take quizzes to learn more about yourself, as well as to take a look at other resources & videos he has available, all of which provide valuable insight. 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. This afternoon, I asked a close family member of mine for relationship advice (something I rarely do), which led to a conversation where he made a statement that I just can't stand. A statement he's made multiple times before. A statement I've corrected many, many times. A statement that causes me to cringe more with each time I hear it. And yet, a statement he continues to say. Specifically, the statement he said was, "The more I learn about autism, the more I believe that everyone is on the autism spectrum." Other ways of saying this are "We’re all a little bit autistic" & "All of us are autistic to a degree." If you've been in the autism community for long enough, you've likely heard one of these statements, or a similar statement that suggests that everyone is autistic. So, going off of that, the topic of today's blog post is about what these kinds of statements really mean & why hearing these statements hurts so much. As much as it hurts to hear statements like these, these are common beliefs among allistic, or non-autistic people, so I wanted to take the time to explain where these beliefs come from & what is so wrong about them. However, before we dive in, I want to make one thing clear. If you've ever said something like, "Everyone is on the autism spectrum" before, this post isn't about telling you that you are bad or wrong. I totally understand where the belief comes from & I know that most people who say statements like these are trying to be compassionate towards the autistic person they're talking with. However, this isn't how it comes across to the autistic person. Let's Take A Moment To Explore What The World Would Likely Be Like If Everyone Really Were On The Autism Spectrum:
To really understand why everyone simply cannot be on the autism spectrum, we have to understand what the autism spectrum really is. We already discussed this in my April 3rd blog post entitled What Does It Mean To Be Autistic?, but it never hurts to review what we already know, so...
What Exactly Is The Autism Spectrum?: Autism spectrum disorder is a lifelong neurodevelopmental disability caused by differences in the wiring of the brain that cause difficulties with social communication & interaction. It also causes restricted or repetitive behaviors or interests. The key problem with stating that everyone is on the autism spectrum is the fact that autism spectrum disorder is a neurodevelopmental disability. In order to be autistic, you have to have a certain combination of autistic traits that impacts your daily life on a significant level. A Couple Important Points To Remember:
Hearing That Everyone Is On The Autism Spectrum Hurts So Much Because... It is dismissive & it minimizes our struggles. It also translates to everyone being just like us when we know that couldn't be further from the truth. Also, if everyone were autistic, how could we still be so misunderstood? Whether someone was diagnosed as a child or as an adult, (s)he has gone through a lifetime of feeling different from his or her peers. Telling us that everyone is on the autism spectrum, or any similar statement dismisses these differences & the significant difficulties that come with them. What You Should Do Or Say Instead: Offer a listening ear & a shoulder to cry on. Autistic people, myself included, often feel alone, unheard, & like their perspectives don't matter. They have more than likely had a difficult life beginning in early childhood. Help the autistic person feel less alone by truly listening & by showing him or her that you care. Truly listening & being compassionate are the best things you can do & will likely combat the loneliness that the autistic person is currently experiencing. The past week has been incredibly stressful for me. A little over a week ago, one of my dogs woke up from his night sleep covered in his own urine. This is the first time he has ever done that in his lifetime. He's never even done that when he was a tiny puppy, prior to being fully potty-trained. He's always warm (dogs' body temperatures are warmer than humans' body temperatures), but this particular morning, he felt warmer than warm. I put him in the bath tub while I called his vet & figured out what to do with him. Unfortunately, his vet wasn't able to get us in until 7:20 that evening. I wiped him down, but didn't give him a full bath because he hadn't quite had his flea & tick topical on for long enough before being able to be bathed. Plus, with him needing to go to the vet that evening & me being the germaphobe that I am, I wanted to bathe him after he came home from the vet rather than beforehand. I have to tell you, that day was the longest day ever. My little guy; who will be turning ten in a week; is typically such a lively, happy, energetic little man; but the life was completely sucked out of him. I had never seen him this lethargic & sickly before & that was quite scary & stressful. He didn’t pick up his head if someone walked in or if his name was called. But, it was even more alarming that he didn’t want belly rubs. That boy is the king of belly rubs. Even with the number of dogs I've cared for, I've never met a dog who loves belly rubs more than my sweet Teddy. When it was finally time for Teddy’s vet appointment, my mom & I both took him in. Based on his appearance as well as my observations that I shared with the vet, she thought that due to the area we live in, he probably had a tick-borne illness. He was brought back for a urine test & couple of blood tests (one of which was to check for tick-borne illnesses). Teddy tested positive for two out of the three tick-borne illnesses that he was tested for. Specifically, ehrlichiosis & anaplasmosis. I am super religious about combing my boys & checking them for ticks every single night. Plus, them being all white helps tremendously with being able to easily spot something like a tick on them. Not only that; I apply a flea, tick, & mosquito killer & repellent topical on them twice a month during the warmer months of the year; & I don’t allow them to romp around in tall grass, in wooded areas, & in all other places where ticks are likely to be. I did everything right & I never saw any ticks on him. The first day that I really thought he was almost all better was yesterday (exactly one week since symptoms started), but until I saw major improvements, I was stressed to the max. That would stress anyone out, autistic or not. With that in mind, let’s take a moment to talk about stress, how neurotypical people deal with it, how autistic people deal with it, & how I deal with it. What Is Stress?:
As explained by the World Health Organization: Stress can be defined as a state of worry or mental tension caused by a difficult situation. Stress is a natural human response that prompts us to address challenges and threats in our lives. Not everything that we experience that causes stress is negative. Here are some examples of negative & positive stressors. Negative Stressors:
Positive Stressors:
The Impacts Of Different Intensities Of Stress: Mild Stress: This type of stress typically motivates the individual to work as hard as (s)he can to achieve some type of end goal. Severe Stress: This type of stress is typically debilitating for both the individual & his or her performance. How Stress Affects Autistic People: Because autism tends to reduce the resources a person has to cope with challenges brought on by stress, an autistic person's experience with & their ability to handle various stressors will likely be much different than it would be for an allistic, or a non-autistic person. Autistic Comorbidities: In my blog post about why most autistics don't want a cure for autism, I mentioned the fact that there are a lot of comorbid disorders that tend to accompany autism. Some disorders that autistic people are at higher risk for are mood disorders. In fact, it is estimated that 10 to 50% of autistic people develop depression in their lifetimes & about 5% of autistic people develop bipolar disorder in their lifetimes. In the general population, prevalence rates for depression & bipolar disorder are much lower & are estimated to be up to 7% & less than 1%, respectively. Other mood disorders that autistic people are at a higher risk of developing include, but are not limited to anxiety disorders, post-traumatic stress disorder (PTSD), & obsessive compulsive disorder (OCD). Autistic people who are verbal & who do not have intellectual impairments are at a much higher risk of developing mood disorders than those who are non-verbal &/or are intellectually impaired. Due to the high prevalence of mood disorders in autistic individuals, stress could be highly problematic to cognitive, physiological, & behavioral functioning in the autistic population. Common Stressors For Autistic People:
Common Ways Autistic People React To Stress:
Studies Indicate That Autistic People Have Heightened Responses To Stress:
How Stress Affects Me: I have never been able to handle stress well. Stress tends to cause me to get flustered & prevents me from being able to think clearly or rationally. Depending on the intensity of the stress I am experiencing, it may cause shutdowns, which prevent me from being able to communicate verbally or non-verbally with others. Meltdowns are an extremely rare occurrence with me, but stress has caused meltdowns to happen in the past. My Most Common Stressors:
While some of the above stressors also may stress out allistic people, it is important to remember that I experience stress on a whole different level than what is considered normal. For example, there have been times in the past where I was trying to have conversations with my supervisors, but was unable to form simple coherent sentences due to the panic that resulted from my supervisor simply being in the same room as me. Another good illustration of how stress affects me is I have been told from multiple police officers that they thought I was on drugs during their initial interactions with me. I have never been on drugs in my life, but clearly, police officers stress me out so much that interacting with them causes me to act like I'm under the influence even though I am far from it. There will be a future blog post written about issues surrounding police officers & autism where issues like this will be discussed further. 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. 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. Part of the reason I started this blog was to use my voice to help others in the autistic population. Our voices matter & no matter how much you read about or study autism, you'll learn the most valuable information from autistic people themselves because they are the only people who truly know what it feels like to be autistic. Autistic voices have been silenced, ignored, & talked over by allistic, or non-autistic, people for decades. Sadly, this has resulted in higher suicide rates, lower life expectancies, & higher rates of PTSD, depression, & anxiety for autistic people across all levels of autism. Personally, I feel that much of the time, I am talked over or ignored, unless I'm having a one-on-one conversation with someone who is very clearly giving me his or her full attention. I know this is part of the reason I have anxiety about expressing myself, even among close family. I felt this way a very, very, VERY long time before I knew I was autistic. We DO NOT need your voices. We NEED our voices to be heard. So, please remember to stop & listen to us. It really matters & you doing that one simple thing will really make a difference. Some Other Things To Remember:
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AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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May 2024
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