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! 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:
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. 💙 During a recent family birthday dinner, my mom's cousin's husband made a comment about the fact that I probably didn't cry much as a baby or as a young child. The truth is, though, that that couldn't be further from the truth. In fact, as my dad told him, I was a very colicky baby with quite a loud cry for the first three months of my life. I remember family friends, neighbors, & some family making similar comments to both my parents & me ever since I was a little girl. We could always see their point because on the outside, I was a quiet, well-behaved, polite little girl who was comfortable interacting with adults. No, I didn't know how to start or keep a conversation going, but as long as I was talking to someone who could do that for me, that wasn't a problem. This is also often the reason why autistic girls who are now in their twenties & older are often not diagnosed until adulthood, if they are diagnosed at all. Little autistic girls often acted just like how I did growing up. They tended to be quiet, not cause trouble, did as they were told, & interacted well with adults. They were what my parents' friends would call a dream child. On the other hand, little autistic boys tended to be loud, troublemakers, disruptive, & had difficulty listening. Because of this, the parents & the teachers of these boys saw their behavior as problematic, which pushed them to get them evaluated for & diagnosed with autism spectrum disorder. The Girl Wearing The Mask: I have been told countless times by my parents' friends, particularly by the ones who have sons & no daughters, that they wished that they had a daughter just like me. I mean, I was the perfect child after all. A quiet girl who never caused any trouble. What else could a parent want? Growing up in a neighborhood full of boys, I remember sitting on my next-door neighbor's front steps, helping her pull dead flowers out of her large flowerpot while she braided my hair. I had the hair she so badly wanted to play with before her daughter was born. 😜 Given that picture I just painted for you, from the outside, I looked like I was any parent's dream child, so it was abundantly clear to me why my family's family & friends would think that raising a girl like me was easy. When comments like that were made to me, I just smiled & nodded my head, thinking to myself that they don't know what my home & school life was really like. The struggles I went through day in & day out. The worry I caused my parents. The struggles & worry that now make so much sense with an autism diagnosis. The Girl Behind The Mask:
Home Life: I experienced very intense dizzy spells when I was an infant & again from when I was six until I was seventeen. A big part of my & my family's life when I was growing up was revolved around preventing me from experiencing dizziness, or at least preventing dizzy spells from coming on when I was outside of our home. I remember the traumatic details of it so vividly that it's as if it is happening right now. I would be lying in bed & I would feel like the entire world was going round & round. The world felt like it was spinning so fast all around me, frightening me more than I've ever been frightened before. I remember screaming & crying at the top of my lungs & gripping my dad's hands for dear life. Nothing my parents could do or say would help. Nothing helped other than a full night's sleep. I was always told to try to go to sleep when this happened, but I never could unless it was actually bedtime. Yes, it was just as bad as I'm making it seem. If you would like to read more about my experiences with dizzy spells & my very intense fear of being dizzy, I go into even more detail about this in my previous blog posts about the coronavirus pandemic, about vestibular processing, & about vestibular overload. While I'm still very prone to dizziness to this day, it is such a relief that it no longer affects me like it once did. Due to this trauma I faced when I was growing up, feeling dizzy continues to be one of my top fears. So, I still live my life in a way where I do everything I can to prevent feeling even slightly dizzy. I know what my triggers are, I am very aware of my body & how certain things make me feel, & I have coping mechanisms to help the feeling of dizziness be more manageable. This is one of the reasons why when I drink alcoholic beverages, as soon as I start feeling like there is alcohol inside of my body, I stop drinking. The happy & relaxed feeling that you get when you drink is quite frightening for me & is something I want to do everything in my power to avoid. School Life: Academically: I couldn't learn like other students my age could & my very observant fourth grade teacher picked up on it, suggesting to my parents that they get me evaluated for learning disabilities. When I was ten, I was diagnosed with a nonverbal learning disability & processing speed difficulties. I now know that this was a misdiagnosis because many of the symptoms of nonverbal learning disabilities are the same as the traits an autistic child might have. Girls of my ability level were just not being diagnosed with autism back then. When I was in fifth grade, my parents took me into Boston to have further learning disability testing done. The results showed pretty severe deficits, which ended up being caused by a medication my neurologist prescribed me for my dizzy spells (discussed above ↑), which doctors believed was either a migraine or a seizure variant. My parents were super upset because this testing was very expensive & was not at all helpful. Unfortunately, this particular medication had no impact on the frequency or on the severity of my dizzy spells either. Socially: Because I wasn't well-liked by my peers, I was bullied pretty severely from the time I was in first grade until I was a college senior. This is a commonality among us autistics. Every autistic child & every autistic adult you talk to will likely have something to say about bullying. Knowing that I have always caused my parents extra worry, I tried to minimize the pain that I was experiencing in front of them. I think this is a lot of the reason why the effects of the bullying still have a profound effect on me to this day. Even at that young age, I was trying to be the best daughter I could be. 💙 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:
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. 💙 A couple days ago, my case worker called me regarding my disability application. This is the first time I ever heard from him since applying for disability benefits back in early December. In fact, before this week, I didn't even know I had a case worker! Unfortunately, the call ended with me feeling incredibly flustered. Despite the fact that my case worker & I were both speaking English & we are both native English speakers, I felt as though we were speaking two entirely different languages. This is quite a common occurrence for me, & for other autistic people, as well. Communication is so, so difficult when you're autistic. In fact, all my adult life, I've had my dad sit with me when I make phone calls about my personal needs. And it's not just because of the severe phone anxiety I experience. It's because I literally cannot communicate with people about the numerous issues I deal with everyday unless they are part of my very, very tiny inner circle. Especially when I'm on the phone. When I first received my autism diagnosis, I expected to have a much, MUCH easier time conveying my needs to & working with various resource people. I mean, now I have a name for my struggles, plus these people are used to working with people with disabilities, right? I was SO wrong here! I have found that it has been almost impossible to get my points across to anyone unless their background is specifically in autism AND they have a certain personality type. Without that exact combination, people are almost impossible to work with.
For instance, back in December, I had an extremely heated argument with the resource person at the autism center where I went for my autism spectrum disorder evaluation & diagnosis. I expected that this conversation would give me hope, but instead, it left me feeling more defeated & alone than ever before. I could go on & on about my conversation with her. I would think that not only working in an autism center, but having an autistic adult child at home would make her be able to speak to an autistic woman with respect & dignity. Much of what she said was completely uncalled for & inappropriate. Despite the fact that I consider myself a very patient person & easy to get along with, I can tell you that the only reason I didn't completely lose my cool with her is because I was walking my dog, Teddy at the time she called me back & I wasn't alone in my bedroom. I needed to control my emotions in order to not make a complete fool out of myself in public. That's how bad it was. The same exact thing happened during a phone call with my vocational rehabilitation counselor this past June, but I can give him more benefit of the doubt because he certainly knows a lot less about autism than the autism resource woman. Lastly, during my phone conversation with my case worker a couple days ago, he put so much more weight on my autistic comorbidities than on autism itself. I can tell you that while I likely would still struggle with mental health challenges without being autistic, being autistic is what makes my mental health challenges so disabling that it affects my ability to work. Autism is what's important here, not the plethora of other difficulties I have. Yes, I put down other diagnoses too because you can't forget that they do exist. But, that's not what's important here. People focus on the mental health aspect of things because that's what they know more about. They also think that if you take medication & go to therapy, you can be fixed. And if your issues can be fixed, then there's no need for disability benefits, right? That would save Social Security a lot of money. My case worker was very surprised that I don't see a therapist right now & it has been a very long time since I've seen one. I don't see a therapist is because I feel like it was a total waste of time & money. I'll get more into the details of therapy on another day. My experience in therapy is more than a blog post worth of info. Anyway, the conversation I had with my case worker scared me because how is he supposed to help me if we keep talking in circles & I can't get him to understand any of my points? This is not okay. I am posting about this to show you just how frustrating being autistic can be. I am SO beyond exhausted that no matter how hard I try, I can't get anyone to understand me or to respect my thoughts & feelings. 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 mom & I went to see Barbie this afternoon. I thought I would never, ever see this movie. My impression of this movie before knowing anything about it was that it was just a silly doll movie. Plus, I absolutely downright HATED Barbie growing up. My mom came home a couple days ago & told me she wanted to see this movie with me because she kept hearing people saying that it is a great movie for mothers & daughters to see together, it has great messages, & it has made them both laugh AND cry. I rolled my eyes, but agreed to go with her. Barbie & Me: At all of my birthday parties as a child, I would inevitably receive at least one Barbie doll. I mean, it was such a popular gift for a girl growing up in the 90's, but receiving one as a gift completely stressed both my mom & me out. I can still hear my mom right now: "When you open a Barbie at your birthday party tomorrow, remember to say thank you." Scripting was a common occurrence in my childhood. I didn’t know how to properly react to certain situations, so my mom had to prep me ahead of time. There was no gift I hated to receive more than Barbie. Now, picture an autistic girl trying to hide her disappointment in a gift that she knew she would inevitably receive, that she truly hated. That was HARD. Really HARD. If it wasn't for my younger brother who liked to play with my Barbies' hair & very inappropriately take her clothing off, my Barbies would never have even come out of their boxes to this day. 😂 😂 Why I Hated Barbie: I simply didn't know how to play with her or what to do with her. As I discussed in my blog post about autism gender differences & what autism looks like in females, one of the most common traits in both male & female autism is not knowing how to engage in pretend play. One difference between autistic boys & girls is that little girls are taught at very young ages to be little caretakers. They look at their moms, their friends' moms, & other important women in their lives who spend their lives caring for children. And they mimic their actions by doing the same things with their baby dolls & stuffed animals. I remember enjoying taking my baby dolls or stuffed animals out for stroller rides, feeding them pretend food, giving them baths or changing their diapers, & even pretending to nurse them. 😳 Boys are typically not taught these caretaking skills. So, it is much easier for outside adults to pick up on little autistic boys struggling with pretend play than it is for them to pick up on little autistic girls struggling with the same thing, who were taught these caretaking skills, like I was. This is one reason why more boys receive autism diagnoses than girls do & why boys tend to be diagnosed at younger ages than girls are. Because Barbie dolls aren’t the type of dolls that you play with by mothering, I just didn’t know how to engage in the type of pretend play that was required in order to play with them. In fact, I remember coming home from a friend’s house one day & proudly telling my mom that I successfully played with Barbies that afternoon. The reason why this made me so happy was because of how difficult playing with Barbies was for me. I didn’t enjoy playing with Barbies that day, but I still remember thinking that since I am a girl without a lot of friends, I wanted the friends I did have to like me & to have fun playing with me. I didn’t (& I still don’t) have an open mind about the kinds of activities I engage in, but I made a conscious decision that day to expand my boundaries in an effort to be fun for my friend to play with. Barbie, The Movie 🎥:
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:
I can't believe we've made it to the end of April already! Let's wrap up Autism Acceptance Month by talking about how you should react if someone in your life chooses to disclose an autism diagnosis to you. I was lucky that when I disclosed my struggles & my diagnosis, most people reacted correctly without any guidance, but unfortunately, that's not always the case. This is what autistic people REALLY want from you. The DO's Of Reacting To An Autism Disclosure:
The DON'T's Of Reacting To An Autism Disclosure:
Is Autism Really More Common In Males?: Statistically, boys are four times more likely to be autistic than girls, but because we know so much more about autism now than ever before, we are now questioning if it is actually more common in boys or if it is just more commonly diagnosed in boys. Since it was historically believed that autism was more prevalent in boys than in girls, scientists & doctors have focused their autism research on boys. Because of this, the diagnostic criteria for autism is modeled around male behavior. What we didn't know until very recently is that autism can look very differently in girls. Since autistic girls often have different traits that do not match the diagnostic criteria for autism, traits are easier to miss & are mistaken for other things, like shyness & social anxiety, which are much more socially acceptable in girls than in boys. Girls are also more likely to mask their autistic traits & may mimic appropriate social behaviors by copying behaviors that they see in everyday life & on tv in order to fit in. For example, many girls & women force themselves to maintain eye contact by looking in between someone's eyes rather than into them if eye contact makes them uncomfortable. (I do this until a certain level of comfort with a person is reached, which is when eye contact becomes comfortable & natural for me.) Masking is something that is much less common for boys & men to do. Girls are also often diagnosed with depression &/or anxiety, conditions that frequently coincide with autism, rather than with autism spectrum disorder itself. Because scientists & doctors just began learning about how autism presents itself differently in females within the past decade, many women in their twenties & older have just now been receiving the autism diagnoses that they deserve. Many of these late-diagnosed autistic women never presented stereotypical male autistic traits. These women tended to be evaluated for & diagnosed with autism spectrum disorder after having significant problems with things in their adult lives such as treatment-resistant mental health issues, employment, friendships, romantic relationships & more (all things I struggle with). Other women were diagnosed after their child(ren) was/were diagnosed & they recognized some of the same traits in themselves. I truly believe that the reason I was not diagnosed during childhood is because of my gender. What Does Autism Look Like In Females?:
Social Deficits
Pretend Play One of the most common traits of both male & female autism is not knowing how to participate in pretend play. However, it is more likely that this struggle will be noticed in boys because girls tend to be taught from a very young age to be little caretakers, taking care of a baby doll or a stuffed animal. Because boys tend to be not taught this, struggling with pretend play is much more obvious in males. However, I only knew how to play with baby dolls & stuffed animals. When my little cousin asked me to use her plastic horses & farm animals to engage in pretend play with her, that was a struggle for me. I would often ask my little three-year-old cousin what to say or do. My aunt bringing out a craft project for me to help my cousin with brought great relief! Special Interests One of the most common symptoms of both male & female autism is having a special interest. However, male special interests tend to be very specialized & technical, where female special interests tend to be more "normal." For females, the level of intensity of the interest is what is abnormal. Because of this, it can be harder to notice the difference between a "normal" interest & a special interest. Common special interests in females are:
Wheels Many autistic children have a fascination with spinning wheels that are on a toy truck or train, for example. However, because toy vehicles tend to be boy-specific toys & I was a very feminine girl, I didn't own any toys that had wheels other than a child-sized stroller I used to push my baby dolls & stuffed animals around in the neighborhood. Miscellaneous
What Are Autism Function Labels?: Autism function labels are used by allistic, or non-autistic people, such as parents, family members, friends, caretakers & medical professionals; to describe an autistic person's abilities. If you refer to someone as having "high-functioning" or "low-functioning" autism, for example, you are using autism function labels. What Is "High-Functioning" Autism?: "High-functioning" autism isn't an official medical diagnosis, but is a term that allistic people use when talking about autistic people. When people talk about an autistic person who is "high-functioning," they are referring to someone who despite his or her autism, is able to read, write, speak, & handle daily tasks such as eating, getting dressed, & personal hygiene independently. A "high-functioning" autistic person can also live independently. People may also call "high-functioning" autistic people mildly autistic, less autistic, or something similar. These terms essentially mean the same thing as "high-functioning" autism. "High-functioning" autism is just the term that is used the most often. What Is "Low-Functioning" Autism?: "Low-functioning" autistic people are usually unable to live independently & will require support from a parent or caretaker throughout their lives. "Low-functioning" autistic people are either nonverbal or they have much more pronounced communication impairments. People may also call "low-functioning" autistic people severely autistic, more autistic, or something similar. These terms essentially mean the same thing as "low-functioning" autism. "Low-functioning" autism is just the term that is used the most often. How Are Autism Function Labels Harmful?: Autism function labels are harmful because they cause ableism, or the discrimination of disabled people. How Autism Function Labels Harm "Low-Functioning" Autistics
How Autism Function Labels Harm "High-Functioning" Autistics
What Does the Autism Spectrum Look Like?: Many allistic people would be very surprised to learn that the autism spectrum is NOT linear & the below image is absolutely NOT what the autism spectrum looks like. The autism spectrum looks more like this ↓. More specifically, this graphic is what MY autism spectrum looks like because it illustrates my specific abilities, as well as my challenges. As noted below, the more white space a particular area of the spectrum contains, the more I struggle with that particular situation or activity & vice versa. You will not be able to find another autistic person out there who's spectrum looks exactly like this because each & every one of us is different from one another. What Terminology Should We Use Instead of High-Functioning & Low-Functioning Autism?: Instead of calling us high-functioning or low-functioning, please simply call us autistic or if you need to be more specific, refer to us an autistic person with low support or high support needs. This makes us feel less judged about who we are as people, but still lets caregivers, teachers, or employers know what to expect in terms of how much support & what type of accommodations we may require. |
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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