Internalized ableism is something that most, if not all, disabled, chronically ill, & neurodivergent people have experienced. But, first of all... What IS Ableism? Ableism is the discrimination of & the social prejudice against people with disabilities based on the belief that "typical abilities" are superior. Examples Of Ableist Comments About Autism & Autistic People:
Sadly, several of the above comments are said to me on a consistent basis. A few of them many, many years before I even knew I was autistic. And I have no choice but to take it. Hearing those things hurts. It really, really hurts. Examples Of Ableist Quotes By Temple Grandin, The "Face" Of Autism:
Now that we know what ableism is...
What IS Internalized Ableism? Internalized ableism is when people with disabilities absorb & believe the negative stereotypes & prejudices society holds about them. Examples Of Internalized Ableism For Autistic People:
ALL except for three of the above statements are true for me, in my experience of growing up autistic, & BEING AUTISTIC. This is one reason why it is so important to be kind & to not use ableist language. Your words really, truly matter. A LOT.
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Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people. Throughout this blog, I have briefly mentioned how harmful ABA therapy is to autistic people, but I haven't gone into a whole lot of detail regarding what ABA therapy actually is & WHY it's such a problem. So, I'd like to take a moment right now to talk about that. Now, I'm gonna be upfront with you by telling you that I'm absolutely no ABA expert & I've had to do a lot of research in order to have enough content to write about in this blog post. What IS ABA Therapy? ABA stands for "applied behavior analysis" & simply put, it is a behavioral therapy specifically designed for autistic children. The History Of ABA Therapy: The Lovaas Method, later known as Applied Behavior Analysis, was developed by a man named Dr. Ole’ Ivar Lovaas in the 1960s. The premise was to use behaviorism to "treat" autistic individuals. ABA therapy focuses purely on behaviors with a goal to make the autistic child "indistinguishable from peers." When Dr. Ole’ Ivar Lovaas was practicing ABA therapy, he used rewards for desirable behaviors, as well as abusive punishments (including electric shock) for undesirable behaviors. The Problems With ABA Therapy:
There is SO MUCH controversy regarding ABA therapy in the autism community. While the majority of autistic individuals passionately dislike every aspect of this type of therapy & speak out against it; their parents, their teachers, & their medical professionals often disagree; calling it a miracle that "cured" their child of her or his autism or made significant improvements to their child's autism. Well, that simply isn't the case at all. And this is why.
What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
One of the last things I learned about when I became aware that I am, in fact, autistic, are the problems autistic people have with self-care. Now, I can tell you that in some ways, being as germaphobic as I am is a real blessing because that is why many of these self-care tasks actually get completed. If I wasn't so finicky about cleanliness, being a hygienic person would be much more of a problem for me. All my adult life, I have had to complete self-care tasks in a certain way in order for them to get done at all, or in order for them to get done in a timely manner, depending on what the task is. I know that if you are an allistic, or a non-autistic person, you are probably wondering what exactly makes self-care so difficult. This is why.
Let's take a moment now to talk about various self-care tasks.
Showering 🚿 Steps Involved:
That is over SIXTY steps (because some of these steps are actually two or three steps) that need to be completed in order to take a shower every night. Doing that EVERY single NIGHT is EXHAUSTING. I take a shower immediately after dinner every single night in order to ensure that my shower is completed in a timely fashion. If I didn't do that autistic inertia would get in my way. I don't use a hair dryer, so I like to shower several hours before going to bed. I don't use a hair dryer because:
The other night, my mom came knocking on the door after I had already taken my clothes off because she had taken her glasses off & couldn't remember where she put them. And she couldn't see to find them. She wanted ME to find them for her of course. I told her I couldn't because I had already taken my clothes off in preparation for my shower. Putting my clothes back on after I had taken them off just wasn't possible due to my executive functioning difficulties & autistic inertia. Asking a neurotypical person to do this might annoy her or him, but for an autistic person like myself, putting my clothes back on after I had taken them off would make it so my shower take many more hours to get completed. And following the routine of getting my shower done by a certain time is EXTREMELY important to me. If I wasn't so germaphobic, my shower might not get done at all with such an interruption, but I have certain rules that I follow. They are:
If my dad hadn't been home & able to find my mom's glasses for her, I know this would've turned into an ugly fight. The entire mindset of not being able to put clothes back on after taking them off is a foreign concept for neurotypical people & is one of the many things that make living in a neurotypical world so stressful & so frustrating. Especially when those people just tell me I'm strange & they don't take the time to understand the way I live or WHY I do the things I do. By the way, my mom's glasses ended up being in her bathrobe pocket, a location I would've NEVER looked in, even if I HAD tried to find them. Childhood Difficulties: Growing up, my dad continued to wash my hair in the kitchen sink until a very old age because I just couldn't tolerate doing it on my own. My mom told the neuropsychiatrist who evaluated me for autism that washing my hair when I was a child was incredibly difficult because I would scream if even one droplet of water made it into my eye. Eventually, my parents forced me to wash my own hair in the shower & that was so, so, SO HARD. And it caused so many fights & so many meltdowns. Putting my head under the shower water felt no different than as if someone was pouring rubbing alcohol over my head. And then it seeped under my eyelashes & into my eyes despite the fact my eyes were squeezed shut. No joke. As time went on, I came up with the coping mechanism of using a face cloth to shield my face from the water & that is something I still use to this day. This is why I decided to call my blog Splashed With Water. I talk more about it in my first blog post, if you would like to go back & read it. Rather than boring you, by giving you the step-by-step breakdown of the rest of the self-care tasks, I'll just talk briefly about the following: Dressing 👚 I have to get dressed the second I wake up because with autistic inertia, it will get to be two o'clock in the afternoon & I'll STILL be in my pajamas. Brushing Teeth 🪥 Until I was in middle school or high school, I used a children's strawberry-flavored toothpaste. My mom forced me to change to a normal "adult" toothpaste at some point around the teenage years. Because it's what normal people use. Until I got more used to it, the minty flavor made it feel like my mouth was literally on fire. 🔥 And I just had to live with it. When I was talking about this during my autism evaluation, my evaluating neuropsychiatrist asked me why I couldn't use a non-mint flavored toothpaste. My response? My mom told me I had to use mint because that's what EVERYONE uses, that's what "normal" people use. I always felt like I was abnormal & needed to force myself to be "normal" in order to be accepted. And my efforts didn't work because I STILL wasn't accepted. I still can't use mouthwash, even though my dentist recommends it because the mint is too strong & it burns my mouth. Mint is a flavor that autistic people tend to be way oversensitive to. Now it all makes sense to me, but my mom still makes fun of me because I adamantly dislike mint-flavored anything, including ice cream & chocolate. How could someone dislike certain flavors of ice cream & chocolate? 🤷🏻♀️ Using The Toilet 🚽 Due to autistic inertia & executive functioning difficulties, I have great difficulty getting up to use the toilet if I'm not already in the standing position, so if I happen to be in the standing position, I literally act like it's a bathroom emergency when it isn't because I know that if I didn't do that, I'm not going to use the bathroom until I take a shower that night, many hours later. I know how ridiculous that sounds, but it's absolutely true. When I was a child, I wouldn't flush the toilet after using it because I was completely terrified of the sound it made. I also wouldn't use the bathroom if my mom happened to be doing laundry at that time. The spontaneous & LOUD sound that the washer & dryer made would scare the living daylights out of me! A good night's rest is imperative for a person's health & wellbeing & I'm sure you know what I mean when I say that you just feel better when you're well-rested. However, this is MUCH easier said than done, especially when you're autistic. Being autistic is downright exhausting, so autistic people generally need more sleep than their neurotypical counterparts do. But, at the same time, sleep problems are very common in autistic individuals. This cycle is endless & a perfect example of that is the fact that it is after 1:30 in the morning as I am typing this. Bedtime procrastination is something that is very common with us autistics & it is something that I struggle with SO much. But, that is something I'll get to on another day. So, let's take this time to talk about autism sleep statistics:
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. 💙 Since Valentine's Day was earlier this week, I wanted to write about love, experiencing it, expressing it, & how it looks differently for autistic people than it looks for allistic, or non-autistic people. But, before we begin... What IS Love? Love is a complex mix of emotions that is everyone in the world experiences, whether they are neurodivergent or neurotypical, autistic or allistic, disabled or non-disabled, etc. It is associated with certain behaviors & strong feelings of affection, protectiveness, warmth, & respect for other people (e.g. family, friends, romantic partners, etc.), animals, principles, interests, hobbies, &/or religious beliefs. How Autistic People Experience Love: Widespread stereotypes suggest that autistic people are incapable of feeling love, romantic or otherwise. However, the reality is that autistic people experience love quite intensely (often much more intensely than allistic people). Interestingly, brain scans of autistic people show that when we express feeling love & affection for someone, different areas of the brain are activated than for allistic people. The empathy circuitry of the brain is also working differently. We, autistic people, are typically extremely attached to our close relationships, often more so than allistic people are. This is because we usually have significantly less people that we are close to than allistic people do. Like allistic people, we have a deep desire for those types of relationships, making the close relationships we do have so much more important to us. With this being said, it is important to remember that autism is a spectrum. So, autistic people experience & express love in unique ways that can vary quite drastically from each other. Our experiences & expressions of love are greatly influenced by our individual strengths, challenges, & sensory sensitivities. How Autistic People Express Love: While autistic people feel love & empathy very intensely, often much more intensely than you do, it may be very difficult or impossible for us to express our love & empathy for you in ways that make you feel loved & cared about. Some ways that we express our love include:
Many autistic people experience what is called "limerence." This is when the person we are romantically interested in becomes a special interest. We fixate on every aspect of their being, want to learn about all of their favorite things, or start to picture the rest of our lives with them after just a few (maybe even one) interaction(s). This can sometimes lead to a devastating end when the effort isn't reciprocated or worse, we can't see that it isn't being reciprocated. Tips For Loving An Autistic Person:
Benefits Of Loving An Autistic Person:
A Few Other Things To Remember:
I'm going to start this blog post off by saying this: this is the most vulnerable blog post I have written thus far. Some things that are in it are things that I've mentioned before & some things aren't. But, everything in this post is as real & as raw as it gets, is one-thousand percent true, & is something that I felt needed to be said. Growing up, & even now, my life was & is a struggle. I was autistic & I didn't know it for almost thirty-two years because I grew up at a time when girls like me were just not diagnosed with autism. I was living in a world that I didn't fit into, but I had no understanding as to why that was until about a year & a half ago. I was so lucky because my parents did everything they could to give me the BEST childhood ever. And I'm so thankful for that. However, there were certain things that no matter how loving & how supportive my parents were, they just couldn't protect me from. Every autistic person you talk to will have something to tell you about how society treats her or him; about the trauma that (s)he endures on a daily basis. The way neurotypical people treat us does real, long-lasting harm. I never understood why people treated me so poorly because I didn't think I did anything wrong. Were they treating me that way because I simply exist? Probably. The bullying I experienced in elementary school through college was INTENSE, & it only worsened the older I got. From being made fun of for being too quiet to having my feet walked on top of on a daily basis to being barked at & growled at like an angry dog to boys trying to trip me in the hall & slapping my butt when I was at my locker. Freshman year in college, they put me into a quad with another Shrewsbury alum who inserted nasty things about me into the brain of another one of my roommates. They ganged up against me & made my life a living hell for the entire year. A couple years later, a different roommate suddenly gave me the silent treatment & I had no idea why, until one of her friends told me. It was because I was uncomfortable with boys sleeping over in our room, something that I thought was perfectly reasonable, especially for a quiet & a timid girl like myself. I was never given the chance to make any sort of compromise because she never told me why she was so mad. Many years later, I found out that this particular roommate now has an autistic child. What a coincidence! Being treated with such cruelty on a daily basis for so many years is extremely traumatic for us. And it often has the same types of consequences on our brains as going to war, witnessing someone get murdered, or having an abusive spouse would. It just takes a much longer amount of time to do the same amount of damage. More than 40% of autistic individuals struggle with post-traumatic stress disorder & although I have never been diagnosed, I do think I am one of them. I think that the effects of having to endure the type of treatment I described above for so many years is why it takes me such a long time to trust someone, even now, as an adult. I also never really voiced the significant amount of pain I was experiencing to my parents because I didn't want to worry them. So, I didn't get as much support as I probably needed while I was going through that. I knew I have caused them A LOT of worry ever since the day I was born & I didn't want to add to it even more. From a very young age, I wanted to do everything I could to be the best daughter I could be, even if it meant unintentionally harming myself. When I first learned from my physician that the cause of all of my lifelong struggles was due to living with undiagnosed autism, I took a couple of months to process it & to learn more about how autism affects girls & women. But, after I did that, I wanted to do more digging into my past to learn more about how autism affected me as a young child & as an adolescent. I knew that when I was in school, my mom kept a very thick manilla envelope full of documents & letters from various medical professionals & educators. Knowing how organized my mom always was, I asked her if she still had that envelope & she did. This envelope ended up being a treasure box into my past, containing a lot of information, some that I never knew about myself, from when I was less than a year old until I was eighteen years old. One of the things that really stuck out to me was meeting notes from my seventh grade language arts teacher, Peggy. Better expression in written vs. verbal. More sophisticated style of writing. Not good with being caught off guard. Interacts better with adults. Gets frustrated in groups since they are fooling around and she is so concerned with her grades. Kids aren't patient waiting for her to respond. Struggles with reading comprehension. Getting a bit better advocating for herself. ALL autistic traits. Thinking back to seventh grade, I had always thought very highly of Peggy. I wondered if she remembered anything else about me that would be helpful for me to know, going into an autism evaluation. I knew that she no longer worked in the Shrewsbury schools, but teachers' contact information is usually readily available online. I looked Peggy up & I wrote her an email explaining my lifelong difficulties & how they led to an impending autism diagnosis. I attached a scanned copy of the meeting notes to the email, as well. However, since at this time, I had been a student in her classroom just over eighteen years ago & I hadn't seen or spoken to her in at least fifteen years, I had this underlying fear that she wouldn't remember who I was. I felt like I was a fly on the wall in school, barely saying a word & blending in with the background. I knew she'd had a lot of students since then & I thought I was easy to forget. Spilling my guts out to her only for her to not remember me would've been SO utterly embarrassing. This was in early August of 2022, by the way. It was only a couple of days before I heard back from Peggy & I was beyond relieved to know that she absolutely did remember me. Peggy sounded so delighted to hear from me, too. She described me as a very kind, shy, reserved student (with black-framed glasses if I recall correctly), but she admitted that she didn't think she had much more detail to give me. However, she did offer to chat by phone. And I eagerly took her up on that. If we chatted on the phone, I might be able to foster another connection with a caring & a supportive person & I really felt like that was exactly what I needed because like many autistic people, my life was extremely isolating. This blog post is about my interactions with Peggy & how her kindness & her compassion have changed my life. Peggy didn't know this going in, but I had a lot going on in my life at the time I reached out to her, most of it not even having to do with autism. Back in 2015, my maternal grandpa had a debilitating stroke that left one side of his body without feeling & completely took away his ability to process language (this is known as global aphasia). I unfortunately did not grieve the stroke properly & still to this day, I am in denial that it ever happened in the first place. Now that I know I'm autistic, this makes total sense as we do not grieve in the same way that neurotypicals do. My grandma was his devoted caregiver ever since. The year prior to when I connected with Peggy, my grandparents relocated to Shrewsbury from California because my grandma was dying from tongue cancer. She lived here in Shrewsbury for just two & a half months before succumbing to the disease (six months earlier than expected). While I never had much of a relationship with my grandma, watching my grandpa grieve the love of his life for over sixty years & worrying everyday that he would die of a broken heart was the hardest thing I have ever had to do. At the time I had reached out to Peggy, we had recently passed the one-year mark of my grandma's passing. I was also still getting into the groove of being a secondary caregiver to my grandpa. Due to the brain damage caused by his stroke, my grandpa would often say & do things that hurt me tremendously. No matter how much I tried to remind myself that my able-minded grandpa would never say or do such things, I just couldn't get the hurt to go away. This was particularly difficult for me to deal with because my grandpa & I have always been incredibly close. His hurtful actions were a complete one-eighty from how he'd treated me for the first twenty-five years of my life. All of these things would be difficult for anyone to cope with, but when you're autistic, you're handed a plethora of challenges in life that allistic, or non-autistic people have the privilege of never having to experience. And it's those challenges that make dealing with things like this significantly more difficult. Keep in mind that I didn't know that I was autistic when all of the above events actually happened, so I didn't understand why I reacted like this, why I reacted completely differently from the rest of my family. Ever since I was a young child; I have yearned for my grandparents to live close by & I was so, SO happy to finally have that; but now that I did, my life had become a complete circus. It's something you can't understand without living it.
On the autism forefront, just a couple months ago, I had learned that the reason why I have struggled so much throughout my life was because I was living with undiagnosed autism. It was the reason why:
That first phone conversation I had with Peggy was a breath of fresh air. Back when I was her student, I remember her being really easy to talk to & that was still the case. I filled her in on a lot of things, many of those things being things that hardly anyone knows about me, things that I'm ashamed of. The fact that I even felt comfortable enough to fill her in on those things, after all this time, speaks volumes about Peggy's character, the person she is; especially since I've always felt like I need to protect myself from people; I've always been afraid to show the real me. The way Peggy reacted to the things I told her was really, really comforting. She really took the time to stop & to listen to what I had to say & she didn't make me feel judged, guilty, or like I had done anything wrong. Every time I mentioned how something made me feel, whether it was a positive or a negative emotion, she validated it. And if she suggested something that I didn't think would work, I would explain why, & that was totally okay with her, too. She also told me how much she admired my courage in reaching out to her & that she was here for me. Having that conversation with Peggy gave me the courage to reach out to many of my other former teachers, as well. And while some of those other teachers gave me much more detailed insight than what Peggy could offer me; a few even telling me that an autism diagnosis would absolutely not surprise them; it was Peggy's kindness, support, time, & most of all, her compassion that made the biggest difference to me. That was what I needed more than anything else in the world. As I had other conversations with Peggy later on, she felt that she could no longer offer me the kind of support I needed. Her experience was with adolescents & I was an adult with adult problems looking into adult resources (which I now know are scarce). However, I can tell you that this is absolutely NOT the case at all. I have gone my entire life feeling like when I talk, NO ONE hears me & my feelings don't matter. Sadly, these are commonalities among autistic people. Peggy was the first person I talked to in many, many, many YEARS who really made me feel like she heard what I had to say & she valued my opinion. Plus, she was so, so, SO kind. And she was so incredibly compassionate, too. I have lived a lifetime of people being unkind to me; being critical of everything I do or say, everything I don't do or say, every facial expression I make or don't make. So, it's extra noticeable when someone IS kind; when someone accepts me as I am; when someone ISN'T judgmental; when someone really, truly CARES. When I looked Peggy up to make that first contact & I discovered that she was no longer a language arts teacher, but she was a special education teacher, I wasn't surprised. The notes that she made about me were much more insightful & helpful than the notes I came across from every single one of my other former teachers. Every single one of Peggy's notes was so SPOT ON, about me, AND about an autistic middle school girl. However, after having the interactions with Peggy that I had, I really, truly feel that special education was what she was meant to do with her life; it was her calling. The kids in her classroom are SO lucky to have her. I know she's changing their lives because she's changed mine & it's been twenty years now since I've been her student. (Typing that out makes me feel so old!) More recently, a couple weeks ago, Peggy's mom passed away. When I found out about her family's loss, I knew I needed to go to the visitation. While I've tried to thank Peggy for what she's done for me numerous times before, I didn't think I got my message across effectively enough. There was no better way to thank her, to tell her how much I appreciate her than by going to the visitation to support her & her family during their time of grief. While I was still waiting in line, Peggy caught my eye & gave me a reassuring smile, totally calming my nerves. I knew that the only reason she recognized me was because I had sent her a recent photo of myself back when I originally connected with her. (I look A LOT different now than I did when she knew me in middle school.) That day, during what had to have been one of the most difficult times in Peggy's life, between small actions she was taking & things she said, Peggy was still blowing me away with her kindness & her compassion. When I spoke with her in the receiving line, Peggy asked me about how things were progressing. The fact that she continued to show me so much care & concern while she was grieving the loss of her mom, once again spoke volumes about the absolutely wonderful person Peggy is. As much as I wanted to express the great frustration I was feeling due to things moving slower than molasses, as well as some of the resource people I was working with not only not seeming to know how to help a late-diagnosed autistic woman like myself, but actually making things worse; I didn't. There was a line of people a mile long behind me, all waiting to talk to Peggy & her siblings. Plus, I wasn't there to talk about my personal difficulties. I was there to give her my condolences, my love, my compassion, & my support; things that she had given me a couple years earlier that meant so, SO much to me. I really, REALLY hope that I'll have the chance to fill her in on those things & more one day, at a much quieter time, when I'm not feeling like I need to give her MY support. A few days earlier, when I mentioned to my mom that I was going to go to this visitation, she told me I was very brave for going alone. (This was the first time I had ever been to, or even thought about going to visiting hours by myself-- the couple other times I had been to visiting hours, my family was with me.) In my mind though, I had no choice other than to go to this. I knew that Peggy would never expect me to be there, but Peggy made such a big impact on me recently that I really felt like I needed to go. I am SO quiet; I have a lot of anxiety when it comes to social situations, especially with people I don't know; & I'm someone who really struggles with coming out of my comfort zone. But, when I feel this strongly about something, I do it. And I was SO glad I did. When I talked to Peggy about why I wanted to be there to support her & her family & what an impact she'd made on me, I knew she was really touched by my presence. And that really warmed my heart. So, as I wrap up this very long blog post, why am I telling you all of this? Well, it's because I think you can learn a lot from what Peggy did. What she did is a very good illustration of how doing something so simple can really turn someone's whole life around. When I reached out to Peggy, I was hoping for a little bit of insight, but I got something so much more meaningful instead. She was so unbelievably kind & compassionate, giving me her time & a listening ear. Things that I so desperately needed. And that made such an enormous difference to me in the lonely world that I was living in. 💙 Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
Happy Halloween! Well, maybe it's a Happy Halloween to you, but it's not for me. I've never liked this haunting holiday. So, there. I've come out & said it. I don't like Halloween! Now, having said that, if you're a Halloween-loving person, that's no biggie. In fact, one of my closest friends has a Halloween birthday & I just love her excitement around this frightful day. But, for me, Halloween just isn't my day. And that's okay, too. This Is Why:
I don't dislike everything about Halloween, so this is what I do like about the holiday:
Halloween Challenges For Autistic People:
How You Can Help:
Today is a big day for me because it marks my one year anniversary of my autism evaluation & me getting the validation I waited precisely four months & four days for (I can't believe it!), so in celebration of that, here are some things I've learned about myself over the past year, four months, & four days:
Looking Back On Six Months Of Blog Posts!
April's Blog Topics:
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. Some time ago, my parents' financial guy had made an offer to assist my brother & I if we ever wanted it. My mom took me to see him today because for awhile now, I've had concerns about having too much money in the bank. The reason why? I'm in my thirties now & I have barely spent any money ever since I started earning it when I was a teenager. In simpler terms, I'm really, really, really good at saving money. This Is Why I'm Such A Money Saver: I cannot depend on myself to make money. I became very aware when I was looking for my first "real" job after college that no one wanted to hire me. I don't blame them because if I was someone who was in the hiring position, I wouldn't want to hire myself either, as sad as that is to admit. I really, really, REALLY struggled with this. I was raised in an Asian & a Jewish household. I believe that those two backgrounds expect more from their children than any other background does. I even struggled emotionally that I went to a lowly state school rather than a college that was more highly respected. How many high school seniors get into every single one of the colleges they apply to? 🙋🏻♀️ I didn't have any reach schools & I didn't take any AP classes in high school because I wouldn't have been able to handle the pressure of either one of those things. Ever since I graduated from college ten years ago, I have had an intense amount of pressure put on me by my family & by myself to achieve things that were just not attainable. That really ate away at my self-esteem. My self-esteem wasn't good before this, but this made it a whole lot worse. For many years, my parents would say to me, "Aren't you scared about what's gonna happen to you when we die? Don't you want to make a living?" And for years, I avoided answering that question because I had no answer that would be acceptable to them, no answer that would be acceptable to me. The truth was, I was petrified & I still am. But, until I received my autism diagnosis last year, I had no understanding about why I was never able to reach the types of goals I went to college to achieve, why I am a college-educated person who can't support myself. It was EXTRAORDINARILY frustrating. College & Financial Independence: Achieving financial independence is what everyone strives for & it is a big reason why many high school graduates go on to college, isn't it? Well, let me tell you this. A college education doesn't buy you financial independence. It just doesn't. What a college education buys you is simply that: a college education. Yes, many jobs require a college degree & having a college degree can get you a higher salary than you would've had without one, but having a college degree doesn't get you a job. That was one of the first lessons I learned when my college commencement was upon me. I was an art & graphic design major, so my mom suggested that I call several design firms in the Boston area to see if they were hiring. Trying to be a good daughter, I unhappily obliged. I've always had problems talking to people & making phone calls to people I don't know personally causes anxiety on such a high level that I can't put it into words. None of the design firms I called were hiring, which surprisingly gave me great relief. This was something I never expected, but I knew it was because of the feelings of panic I endured when I thought about life after college. My college experience was absolutely terrible, so the whole four years I was there, I kept thinking that things would get better once I graduated. Well, they didn't. I believe that in general, companies want to hire people who:
I Wasn't Made For The Corporate World!:
Both corporate environments & supervisors, whether I'm interviewing or working at a job, cause me to freeze, become nonverbal, get tongue-tied, panic, act in unexpected ways, & a plethora of other things that give a bad impression. Whenever I try to explain this to people, they just don't get it. Most people work because they have to, not because they want to & they do what they have to do to make a living. But, if all of those things have always happened to me when I'm either interviewing for a job or working for a supervisor, how is that going to work? Job Interview Experiences: I have been told so many times to just practice, practice, practice. But, I believe that in this instance, practice isn't going to help. There's no reasoning with anxiety & until I have reached a specific required comfort level with the person who is interviewing me (something that both takes a very, very long time & isn't possible), everything I've hypothetically practiced will just go out the window at the time I need it most. Plus, that's not even taking into consideration that if I don't actually want the job, I'm not going to be able to convince someone else that I want the job. Now, if you're thinking, "How could you not want the job?!" Wanting the job & wanting money are two totally different things. I have never interviewed for a job that I wanted because every job that I've ever interviewed for was a job that I believed I was better off without. Experiences In The Workforce: I strongly believe that I have never been a good employee, so that in turn makes me not a good employee. I know now that much of this has to do with being an unawarely autistic employee. I have been told the following things from various supervisors:
What I Need In A Job: If I'm not able to be in control of when, how, where, for who, & with who I'm working all of the time, it's not going to work for me. I know that chances are, unless you're self-employed, you don't control all of those things. For an autistic person, not having control of all or at least the most important of those things all the time will cause autistic burnout. This is why many autistic people:
Autistic Burnout Is: The complete physical & mental exhaustion that autistic people experience from trying to live in a neurotypical world &/or from masking their autistic traits too often. This is often a problem for autistic people in the workplace & is often why they often don't have enough sick time or their job performance might be lower than it should be. 💔💔 This is the heartbreaking reality for many autistic people out there & this is why we need more support. 💔💔 My dogs are a breed that requires grooming because they have hair that grows rather than fur that sheds. They typically go to the grooming salon every eight to twelve weeks. Now, those of you who don't have dogs might not be aware of this, but most grooming salons keep dogs in crates for hours until it is his or her turn to get groomed. Because of this, dogs are typically at the salon all day long. I think this is COMPLETELY UNACCEPTABLE. I've brought my ten-year-old dog, Teddy to the same grooming salon ever since he was a tiny puppy, so that's how my expectations of dog groomers were set. This particular groomer took dogs by appointment only & Teddy never took longer than an hour to be finished. Once I had two dogs, they took an hour & a half to be finished. Last year, this groomer who was located about thirty minutes away from us ended up relocating to a town that was another thirty minutes away from us. She later had to close down completely due to medical reasons. My Journey Finding A New Grooming Salon: This was no fun task, particularly for an undiagnosed autistic woman like myself who dislikes change & is extraordinarily picky when it comes to her dogs' care. Seriously, NO ONE can do it right. This is also why I rarely travel. I don't trust anyone to take care of my dogs. Grooming Salon #1: We tried this salon a little over a year & seven months ago when our groomer had COVID & our normal salon suggested we give them a call. They also suggested that we stay with them if we like them, but my response was, "No way, we like you too much!" We didn't know our groomer was planning to relocate at this point, but now them making this suggestion makes a lot of sense. The groomer there barely cut their hair even though I gave her a reference photo, so Teddy & Ollie walked out looking almost exactly the way they looked when they walked in. This salon typically keeps dogs there for way longer than I'm comfortable with, but because they knew we had anxious dogs & both my mom & I were stressed over it, they told us that they would get them done as quickly as possible, which they did. It only took two hours. I knew they couldn't do that if we were regular clients, so this salon wasn't an option. Grooming Salon #2: One of my dog sitting clients takes her dogs to this salon & it is run by appointment, like I am used to. I brought my dogs here a few times & while they looked super duper cute after their cuts, there were several things about this salon that made me a little uneasy:
Grooming Salon #3: This salon was a salon that I had preconceived notions about because I know a lot of people who bring their dogs here. I absolutely DID NOT want my dogs to get groomed at this salon because of how uncomfortable it made me. The reason I was so uncomfortable was because one of my neighbors told me that their dog took four & a half hours here. My neighbor's dog is only slightly larger than my boys, so how long it takes to groom her should be comparable. ⭐️⭐️ Once an autistic person has preconceived notions about something, it is absolutely impossible to change her or his mind! Many neurotypical people think this is stubbornness, but I can tell you it is not stubbornness. This is in fact autism at its finest & it makes me just as uncomfortable as it makes you. ⭐️⭐️ I'll never forget the day that my mom called me to tell me that she thinks we should bring the boys here for grooming. She was trying to convince me that this salon was just perfect. It was clean, well-decorated, & obviously very well taken care of. The woman she talked to was nice, friendly, & helpful. I was not convinced, but not only that, I was furiously mad. Remember, you can't change an autistic person's mind once (s)he has preconceived notions about something (see above↑)! My mom told me I should stop by to see it for myself because she was impressed. So, I stopped by on my way to my client's house who lives just down the street from this salon. Stopping by solidified my negative feelings about this salon. When I got there, it was super hectic, which didn't give me a good first impression. Hectic environments are always a turnoff for me (that's my autism speaking again). But, here's what really made me upset:
My Experience Taking My Dogs To Grooming Salon #3:
My experience taking my dogs to this salon was just horrible. I felt like I was the only one who felt this way though because almost everyone else I know who uses them just LOVES them. I'm used to this though & that's another autistic trait— my opinion often differs from everyone else's. I used to look forward to Teddy & Ollie having grooming appointments. They both looked so dapper afterwards! But, now I dreaded grooming days. I usually had knots in my stomach that started anywhere from a week before the appointment to a day before the appointment. I knew my dogs were crated here, which really bothered me. I know that small dogs like mine are safer in a crate, but what I wanted in a grooming salon was for it to be safe for my dogs to not be crated. Plus, I needed predictability & I never knew how long they were going to take. Predictably is very important to autistic people & unpredictability drives us crazy. I couldn't handle the unpredictability of bringing my dogs here. Also, I am so attached to my dogs that if I'm home & my dogs aren’t, I am very distraught. So, I needed a distraction the entire time my dogs were there. That wasn’t possible. I based my tip on how long my dogs took. If they took two hours or less, I gave a 20% tip & if they took any longer than that I gave a lower tip. Since I've always paid for both dogs, my mom has told me how much to tip. We've brought them here several times & they only took less than two hours once. That was the only time I gave the tip my mom suggested. I was always in such a bad mood on grooming days that it caused me to get into these really bad arguments with my mom & I would snap over the most minuscule of things. Thinking back, I think there wasn't a single time my dogs got groomed at this salon where this didn’t happen. I knew I couldn’t continue bringing my dogs here. It just wasn’t good for me, or for anyone. But, it was important to me that both dogs got groomed together & because of that, I had no other choice. I HATED it. This is a very good example of how I feel so unheard & like my opinion & my feelings don't matter. The fact that I downright HATED this salon didn't matter to my mom & that hurt. Finding Grooming Salon #4 😇: My mom called me one morning a little less than a week ago & said to me, "I found a grooming salon you'll LOVE! I know what you like & you'll love both the salon & the groomer here." Unlike the time she called me to tell me about Grooming Salon #3, the vibe I got from her that morning was completely different. I totally trusted my mom this time, so there was absolutely no convincing needed. But, she wanted to bring me & the pups to this salon to see it & to meet the groomer. This salon was perfect. I LOVEd the groomer, too. She also listened to us when we told her that the easiest way to tell our dogs apart is by their tails. The salon was clean & well taken care of. The groomer had her Cavalier with her that day, but also had a Bichon at home that she takes with her sometimes, too. We let Teddy & Ollie run around in the grooming area & they both looked happy. They were probably super confused as to why they were at a grooming salon & left without a haircut though. They both hate getting groomed! Our First Appointment At Grooming Salon #4: We went to visit the salon this past Wednesday & we booked an appointment for this morning, the following Tuesday. We also cancelled yesterday’s appointment we had scheduled for our dogs at Grooming Salon #3. I was beyond excited for that. The groomer brought her Bichon with her today because she remembered that I made a comment last week about how our dogs love other small, white dogs. She also knew which dog was Teddy & which one was Ollie immediately, so she remembered how to tell them apart by their tails. I gave her a reference photo of a haircut they had at our original groomer & they both came out looking super duper cute. Their hair wasn't cut short enough, but it usually isn't on a first visit to a new salon. That can be easily fixed though. How long did it take us to find this salon? Slightly less than a year & seven months. I'm hopeful that we'll continue to be happy here. Did almost no salon fit my needs because I'm autistic? I don't know, but I think that's quite possibly the case. That's also why I told you all this. To show you how being autistic can complicate someone's life & to show you just how frustrating & aggravating it can be. You may have heard of it, or maybe you haven't, but let's talk about what Spoon Theory is & how it applies to autistics. If you've ever heard someone exclaim, "I'm out of spoons!"; you might've been super confused. And no, (s)he didn't run out of silverware. It was Spoon Theory that (s)he was referring to. Spoonies, as we call ourselves, are people living with chronic illnesses, autism, mental health issues, terminal illnesses, disabilities, & more who use this theory to give their healthy family & friends a glimpse of what it's like to be in our shoes. What Exactly Is Spoon Theory?: Now, it's important to remember that I did not create Spoon Theory & I'm no Spoon Theory expert. I'm simply an autistic woman living with persistent, lifelong mental health issues who has benefited greatly from having a simple & concise way to explain my energy & ability levels on any given day. The Origin Of Spoon Theory: First, I highly encourage you to read the entire origin story of Spoon Theory, but here is Spoon Theory in a nutshell: Spoon Theory was originally created by Christine Miserandino, a woman with lupus. She & her best friend were at a diner late one night when her friend asked her what it was like to live with lupus. And that's when Spoon Theory was born. Christine handed her friend a collection of spoons as a concrete way to illustrate what it was like to live a day with lupus. "I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted." Every chronically ill, autistic, mentally ill, terminally ill, & disabled person begins each day with a limited number of spoons. The number of spoons most spoonies begin the day with is twelve because that's how many spoons Christine handed her friend that night. And every task that you do throughout the day takes up one or more of your spoons. How many spoons each task takes up depends on how difficult the task is for you to do. Depending on the person & his or her illness or disability, certain activities may allow spoons to be replenished. I'll talk more about that later on in this blog post. Remember that an activity such as getting ready for work has to be broken down into smaller steps. Getting ready for & getting to work usually contain all or most of the following steps for most people:
Once a spoonie runs out of spoons, (s)he has no energy left for the rest of the day, so we have to make choices about how we're going to use our precious spoons. For example, are you going to shower or eat breakfast today? If you go to the grocery store after work today, will you have enough spoons left to cook? Healthy people have the luxury of not needing to make these choices because they wake up each day with an infinite number of spoons. While the Spoon Theory was originated by a woman with lupus, it applies to so many other illnesses & disabilities out there as well. How Does Spoon Theory Apply To Autistics?: Autistic people wake up each day with a limited number of spoons. Let's continue to use the number twelve. Sometimes the number of spoons we wake up with can be lower than what is typical. For example, if we had a meltdown yesterday or if we didn't sleep well, we might hypothetically start the day with eight spoons, no spoons, or a negative number of spoons rather than the typical twelve. We have to plan our days very carefully in order to conserve our spoons. We face unique struggles because we live in a world that wasn't built for us. Navigating a neurotypical world uses up our spoons at an astronomical rate. The tasks that I find to take up the most amount of spoons tend to involve interaction with people. Also, because of my vestibular sensitivities, I live my life in fear of germs & illness, so tasks that involve cleaning or being in close contact with people I don't know also take up a lot of spoons. The below image outlines how many spoons I use up for many of the typical tasks in my daily life (although some tasks are hypothetical). As you can see from the below image, many of us, myself included, consistently run on a spoon deficit. It would be impossible for me to only use twelve spoons in a day. I try to conserve my spoons as much as I can, but so many daily tasks take up such a significant number of spoons that spoon conservation is impossible. This is why autistic burnout & meltdowns are so common in the autism community. We are quite simply out of spoons. Most days, I wake up feeling like I am out of spoons before I'm even out of bed because the limited number of spoons I am given each day just isn't enough. When you've run out of spoons every single day of your life, it really takes a toll on you. Because I am consistently spoon-deficient, I try to avoid the majority of tasks that take up five & six spoons. The only task in this group of tasks that I passionately love doing is taking care of my grandfather. Autistic people do not handle stress well & because caregiving is very stressful, it takes up a lot of spoons. However, it also can be very rewarding & it gives me precious time with my grandfather, which I love. Spoon Replenishment: While I am consistently running on a spoon deficit, I feel lucky that sometimes, my spoons can be replenished. This isn't the case with all spoonies. The below image outlines how I personally experience spoon replenishment. Certain activities are much more effective at accomplishing this than other activities. Sleep is something that helps replenish spoons for many spoonies, but that isn't something that helps me. I have many other things that replenish my spoons though, which I am grateful for. Because my spoons are used up much more quickly than they are replenished, this only helps my spoon deficit ever so slightly. Why Does Spoon Theory Help?: I love Spoon Theory because it gives our community a common language that explains our daily energy levels in a simple way. It also helps our healthy & neurotypical family & friends understand what their ill or disabled family & friends are facing in a concrete way. Sometimes, it may look to others that we are lazy when that isn't the case at all. We are simply out of spoons. Without this language & understanding, many of us would be using more of our precious energy than we had left explaining to our family & friends that we are all out of energy. (How ironic is that?!) If you’re new to Spoon Theory, I hope that this explanation helps you to see the struggles that us spoonies face on a daily basis in a new way. And if you know me on a personal level, I hope this helps you understand me better, too. 💙 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:
Happy Independence Day! Due to the holiday, we're gonna spend some time today talking about the difficulties that fireworks can pose on autistic individuals & their families. For many people, fireworks are magical & fascinating, filling up the night sky with mesmerizing colors & patterns. The perfect way to cap off a fun day full of patriotic festivities, whether spent at a picnic, a barbecue, the beach, or by the pool. However, this isn't the case for everyone. One of the groups of people fireworks can effect negatively are autistic individuals. My Personal Experiences With Fireworks: As a child, I didn't have the sensory sensitivities that autistic children stereotypically have. Because I was generally not bothered by most sounds or lights, fireworks didn't bother me the way that they typically bother many other autistic individuals. However, going to firework displays was still an incredibly traumatic experience for both me & my family. The reason for this was simply the time of day that fireworks happen. Obviously, fireworks happen at night, but due to the dizzy spells I endured from the time I was six years old until I was seventeen years old, I would almost always have one of those dizzy spells whenever we went to see fireworks. Dizzy spells were often triggered by tiredness, so they were much more likely to happen during nighttime activities than during daytime activities. This made nighttime activities, including something as simple as going out for dinner, very stressful for me & my family. I constantly felt like I was ruining my family's fun because of something I could not control. So, I often found myself trying to hide my dizzy spells for as long as I possibly could & being afraid of telling my parents that I could feel a dizzy spell coming on. If you would like to read more about my experiences with dizzy spells, I go into more detail about them in my previous blog posts about the coronavirus pandemic & about vestibular processing. As an adult, my after-dinner routine consists of taking a shower, getting in my pajamas, & then snuggling up with my two dogs for the rest of the night. In fact, most nights, I'm in my pajamas prior to 8:30pm. The idea of going out into a crowd of people, being eaten alive by mosquitos, being away from my dogs, & not being able to wash off the germs of the day until late at night sounds incredibly unappealing, in most situations, except if I was visiting family from out of town or vice versa or if I was at Disney World or someplace where the fireworks display was absolutely spectacular. Fireworks Are Fun!
Some autistic people really enjoy fireworks & being someone who finds fireworks enchanting & magical, I am one of them! What I don't like about fireworks is the fact that due to the time they happen, they are extremely disruptive to my nightly routine. Plus, it's so much hassle to get there & there is so much waiting involved for a display that is usually relatively short. But They Can Be Painfully Loud... And I really mean this. I am not an autistic person with auditory sensitivities, but to some autistic people, this can be incredibly overwhelming. Even though to you, the sound is far away in the night sky, your autistic loved one may be hearing it as if the fireworks are exploding in his or her own ears. ...And Painfully Bright! Yes, fireworks can actually hurt. All of the bright sparkles that make fireworks look so cool & awe-inspiring, as well as the strobe-like effects they create, can cause big problems for autistic people. Once I outgrew my childhood dizzy spells, which were often triggered by certain frequencies of lighting, I no longer had sensitivities to lights. Many autistic people hate bright lighting, making fireworks an overwhelming & difficult experience for them. Just like certain frequencies of lighting triggered my childhood dizzy spells (which likely were a migraine or a seizure variant), these same types of lighting can trigger seizures in autistic people, something many autistic people struggle with. While I've never heard of someone having a seizure due to an overload of fireworks, merely knowing the effect that certain types of lighting has on certain people can be very overwhelming & cause a lot of anxiety for them. The Crowds & The Music Are Loud, Too! Firework displays always include people & almost always include music. Loud voices & loud music can be just as hard on autistic ears as fireworks are. Also, because of our difficulties being able to read people's tones of voice, it can be hard for some autistic people to tell the difference between voices raised due to excitement from voices raised due to anger. This gives us a whole other level of anxiety that neurotypical people do not experience. Weather Sensitivities: Another consideration to take into account is the weather. Some autistic people cannot tolerate humidity. Others have sensitivities to water, so they would have issues if it's raining. Personally, I have an issue with raindrops touching my face, so I'm always shielding my face from rain! How You Can Help:
Traditionally, it was thought that autistic individuals were not interested in having sexual or romantic relationships. However, the reality is that this couldn't be further from the truth. My Personal Experiences: For me personally, I had always envisioned that I would have what my parents had: I would meet my future husband at a young age, I would get married in my early to mid-twenties, & I would start creating my family shortly after that. If things had gone how I had planned, I would have two or three children at this point in my life. As a very young child, I struggled with being able to relate to & connect with others. Back then, I didn't know what I know now: that this was why I didn't have friends. In fact, the majority of my friendships, particularly in my younger years, were forced on me by my mom. As I got older, my inability to relate to & connect with others also interfered with my romantic relationships, the longest one lasting just a couple short months. Both relationships ended for the exact same reason: physical intimacy was extremely uncomfortable for me. Eventually, I realized that my inability to form personal connections & relationships isn't something I would ever outgrow & it would haunt me for the rest of my life. While yes, I did come to this realization, does this mean I have accepted this reality? Absolutely not. As I'm quickly approaching my mid-thirties, my biological clock is ticking, which is absolutely terrifying. This is also the reason why whenever I hear of a couple who is newly engaged or who is expecting a baby, it causes intense sadness for me, rather than causing me to be happy for the couple, like I should be. Dating has always been extraordinarily challenging for me & now I know why: being an autistic individual, no matter how much you want love, can make the dating scene almost impossible to navigate. Autism & Sexual Orientation: On a different, but relatable note, as the month of June, otherwise known as Pride Month, comes to an end, I wanted to touch on the correlation between autism & the LGBTQIA+ community. Did you know that autistic people are more likely to identify as LGBTQIA+ than allistic, or non-autistic, people are? According to a 2021 study conducted by the Autism Research Centre at the University of Cambridge in the UK, autistic individuals are three to nine times less likely to be heterosexual than individuals in the allistic population. About 2,400 people ages sixteen to ninety, which included 1,183 autistic individuals, participated in this study. This research found that autistic men were more than three times more likely to identify as bisexual than their allistic counterparts would be. On the other hand, autistic women were slightly less than two & a half times more likely to identify as either bisexual or homosexual than their allistic counterparts would be. In regards to sexual activity, the research revealed that autistic individuals are less likely to be sexually active. More specifically, the research found that for every ten neurotypical adults who were sexually active, only four autistic adults could say the same. It was also found that autistic people were close to eight times more likely to identify as asexual than their allistic counterparts would be. Regardless of asexuality, this research also revealed that autistic women in particular had less sexual desire & less libido than allistic women did. What Is Asexuality?: The "A" in LGBTQIA+ stands for asexuality. An asexual person does not experience sexual attraction— they are not drawn to people sexually & they have no sexual desires. Unlike celibacy, which is the choice to abstain from sexual activity, asexuality is not a choice, but is an integral part of who we are that we are born with, just like other sexual orientations. Like autism, asexuality is a very diverse spectrum, meaning every asexual person has his or her own very specific needs & boundaries regarding relationships, attraction, arousal, physical intimacy, & more. Why Are Autistic People More Likely To Identify As LGBTQIA+?:
There isn't currently any firm scientific evidence as to why autistic people are more likely to identify as LGBTQIA+ than their allistic counterparts are. However, according to Cambridge researcher & doctoral scientist Elizabeth Weir, "One possibility is that people with autism may be less attached to social expectations & feel more free to express their true identity." Autism & Gender Identity: According to a 2020 study, also conducted by the Autism Research Centre at the University of Cambridge, transgender & gender-diverse adults are three to six times more likely to receive an autism diagnosis than their cisgender counterparts are. About 600,000 adults in the UK participated in this study. However, it is likely that many of these transgender & gender-diverse adults were undiagnosed as autistic during the time of the study. While about 1.1% of the UK population was estimated to be diagnosed as autistic during the time of the study, this study suggests that between 3.5 & 6.5% of transgender & gender-diverse adults in the UK are autistic. 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. 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. Grief is something that is certainly not fun to talk about, but it's part of life, & there were a couple difficult events involving my grandfather (he is doing okay!) that happened within the past few days that has me thinking about it more than usual. Just to give you a reference point, the five stages of grief are:
Those who are close to me know how incredibly important my maternal grandfather, who I lovingly call Gung-Gung, is to me. Ever since I was a little girl, he & I have had the most incredible, special bond. I love that man so, so, SO much. Back in January 2015, while on a cruise in Mexico, he had a major & devastating stroke. As a result, he acquired a condition known as global aphasia, which means that he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language of any kind. He also lost feeling on the entire right side of his body. Transition & Change:
Now, remember that grief doesn't only occur when someone dies. It also occurs when any major negative change happens in someone's life. For example, people may grieve when going through a divorce or heartbreak or if a close family member or friend moves away. I have been in the denial stage of grief for eight years & four months now (since that very day in January 2015 that the stroke occurred). Yes, as horrible as that is (it's even more terrible seeing it in writing than it has been thinking it in my head all of these years), that's the complete & honest truth. A Side-Note About Therapy: I had been seeing a therapist at the time that the stroke occurred. And I did tell my therapist how much I was struggling with my Gung-Gung's stroke, but I don't think she understood to what extent. I stopped going to therapy in the fall of that year, when I had to change to a different insurance plan that my therapist didn't accept. I haven't tried therapy again since, because my experience in therapy was that it either was extraordinarily harmful & detrimental to my mental health (the exact opposite thing that therapy is supposed to accomplish) or that it didn't make any difference at all, good OR bad. I had been through a plethora of therapists, all who, believe it or not, I wanted to strangle, before I found my last therapist who I really loved. Going through so many different therapists before finding the right one was incredibly emotionally & physically exhausting & draining & going through that multi-year process again, especially when I don't see the benefit in it is just not something I feel I have the energy or the drive for. I'll get more into my experience with therapy on another day. Now that I know I'm autistic, struggling this much with my Gung-Gung's stroke more than eight years later makes complete sense. Autistic people thrive on routine. However, transition & change are extremely difficult for us. That has to be why I'm still in the denial stage of grief this many years later. I just want my Gung-Gung to go back to being the person he was before his stroke. I mean, I know my mom wishes that too, but she has long accepted that this is her new reality, while I'm still denying that. Special Interests Particularly in autistic girls & women, special interests can be people or characters in novels or in movies. If an autistic person's special interest is a person, not only is the autistic person is going to be incredibly loyal to that person, but rejection will be particularly devastating, whether the person of interest is a friend, a romantic interest, etc. I didn't realize it until very recently, after I began learning more & more about how autism presents itself in girls & in women, but my Gung-Gung is one of my special interests. For me, this means that his presence & his mere existence in the world, & in my life takes precedence over everything else. The changes that occurred in him due to the severity of his stroke completely crushed me. And once he eventually passes away, that will shatter my entire world. The following statements are all true about my Gung-Gung:
When my grandma passed away a couple years ago, broken heart syndrome became one of my special interests. Unfortunately, I never had a relationship with my grandma, so I didn't grieve when she died. The hardest part about losing my grandma was thinking that her death would be what would kill my Gung-Gung, who I love so much. (My grandparents had an incredible love story.) I learned that the risk of a man dying of a broken heart goes down dramatically at the three-month mark, so once we hit three months, I felt an instant wave of relief. My aunt & uncle were visiting this past December & I had a heart-to-heart conversation with my aunt one night during that visit. My aunt brought up that when my Gung-Gung eventually does pass away, it really won't be that devastating because of how much he's changed since his stroke. I absolutely did not agree with her because the finality of death is so terrifying to me. Never feeling his arm around my shoulders; being able to hold his hand; or seeing my puppy, Ollie kiss him all over his face, bringing him so much joy & laughter is just not acceptable to me. It would absolutely devastate me & break my heart & wouldn't bring me any relief whatsoever. What my aunt expressed to me is how the average neurotypical person would feel, given the situation. But, what I'm expressing here is how one autistic woman feels, given that same situation. Being Literal-Minded Autistic people are literal-minded. Now, with that being said, I personally don't believe in God, in Heaven, or in any kind of afterlife. So, as morbid as that is to believe, I believe that when someone you love passes away, you'll never see that person ever again. The idea of God, Heaven, & an afterlife are just so abstract, foreign, & unbelievable in my mind that until I've actually seen proof that those things exist, I'm not going to believe in it. I know that those beliefs bring comfort to many people & I wish it did to me as well, but it just doesn't make sense in my literal mind. I know my Gung-Gung believes in Heaven & he wants to go up there to be with my grandma, the love of his life, again, but because I don't believe in it myself, I don't have the comfort he does. In fact, the idea of that actually makes me sick to my stomach. I am also someone who believes that the two things that should never be talked about are politics & religion, unless you know for sure that whoever you're talking to has the same beliefs as you. Because of the role my beliefs play in my fear of death, I thought this was important to mention, but at the same time, I want you to know that I completely understand & respect your beliefs, whatever they may be. So, I tried my very best to make this section as short & as to the point as possible. Fear Of The Unknown Autistic people like to know what to expect. In my thirty-something years of life, I have lost two grandparents & two pet bunnies. (Luckily, I have not lost any other loved ones.) I didn't grieve when either of my two late grandparents passed away. I believe that when my Gung-Gung passes, it will be the first time I would have ever grieved. And from what I know about myself & about my relationship with my Gung-Gung, I'm very worried about my ability to handle that grief. I hope that this post gave you valuable insight as to what grieving might feel like as an autistic woman. |
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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