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. 💙
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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 love taking care of my grandpa, who I call Gung-Gung. I really, really love it. I wouldn't trade this precious time I'm getting with him for the world. But, caregiving is HARD work & it's even HARDER work for an autistic person, like myself. Let me tell you why. My Gung-Gung has to get a blood test once a month & it's my responsibility to take him. It's an important responsibility, but it also gives me precious time with him. I love that one Thursday a month. This past Thursday was Blood Test Thursday. Going With The Flow: When I arrived at my Gung-Gung's apartment complex last week, I was surprised to find that the visitor parking had completely disappeared. Autistic people, like myself, like to be prepared & don't like surprises, like this one. Not that anyone would like a surprise like this. It's just more of a problem for autistic people. My mom had recently told me that a notice went out that they were reducing the visitor parking & there were now only going to be three visitor parking spaces. (There used to be roughly double that.) But, signs that read Resident Parking Only were posted in equal intervals, in front of the old visitor parking spaces. That included one of the spaces that was supposedly still a visitor parking space. So, I opted to park on the street. I really don't like doing that, since it takes longer to get inside the building. Plus, getting the car to bring to my Gung-Gung who's waiting for me when I need to drive him somewhere takes longer. I don't want him to yell at me for taking too long, which does happen sometimes. When I asked my mom about the parking situation later on that night, she didn't know what I was talking about & said that that sign wasn't there yesterday. 🤷🏻♀️ Also, walking into my Gung-Gung's apartment, whether I'm there for scheduled caregiving duties or I'm there for a surprise visit, gives me heightened anxiety. I never know what I'm going to be walking into. This gives my mom, an allistic, or a non-autistic person anxiety, as well. But, for me, my anxiety about this is on a whole other level. Autistic people need to know what to expect; they don't like surprises. I personally feel like I need time to prepare for whatever situation is about to happen, but not knowing what I'm walking into doesn't allow me to do that. The following questions usually run through my head:
Anyways, we took the elevator downstairs, I ran to get the car as quickly as I could, & off to the blood test we went. The medical building we go for the blood test is right next door to my Gung-Gung's apartment complex, but due to his age & his physical abilities, it is still too far for him to walk. So, I drive. Putting Someone Else's Needs & Wants Ahead Of My Own: I had this idea in my head that I wanted my Gung-Gung to sit outside with me after his blood test. It was an absolutely gorgeous day & now that we are sadly into the month of September, these perfect days are getting to be more limited. I am someone who needs a lot of sunshine in order to function, so I take a vitamin D3 prescription year round. Plus, I shine a happy light on my face for about ten minutes before getting out of bed in the morning during the late-summer through the mid-spring months. Like many people living in this part of the country, I believe I struggle with seasonal affective disorder, although it’s never been diagnosed. Anyways, once my Gung-Gung's blood test was over, I told him that it was a beautiful day & asked him if he wanted to sit with me by the gazebo across the street before going back to his apartment. It's good for him to get fresh air, something he can’t do without accompaniment. It's much easier to convince him to sit outside if he's already outside rather than if he's inside his apartment. Plus, I was giving up time that I would normally be spending out on the back deck in the sun to take care of him. Much to my disappointment, especially since I knew it would likely be much colder when it is time for his October blood test, he didn't want to go to the gazebo. He told me he just wanted to go back to his apartment afterwards. Knowing that he would make a scene if I tried to convince him otherwise, I knew I had to take a step back & let him take the wheel. This is something that's difficult for anyone in the caregiver position, but it is even more difficult for an autistic person. However, he obviously changed his mind between the time we had this conversation & the time we left the medical building. When we left the building, he started heading straight for the gazebo even though I told him I would drive him there. We sat on a park bench in the gazebo park for a short while, side by side, him tapping his hand on my leg to a beat & me with my arm around his shoulders. This right here was my old Gung-Gung. This was what we did together ever since I was a young child, way before he had his devastating stroke. Although, I only started putting my arm around him when I got big enough to do that. 😉 These glimpses of my old Gung-Gung overwhelm me with so much warmth & happiness that it is hard for me to properly convey how I feel. I've always felt so safe, secure, protected, loved, & cared about when his arms were around me. While I still feel some of those same things today, despite him being disabled & me being all grown up, I feel so blessed to now be doing the same thing to him. Giving him the safety, the security, the protection, the love, & the care that he always gave me while also doing something that is good for him. Getting him some fresh air & sunshine. On another note, I wrote more about how being an autistic caregiver affects me in blog posts entitled My Experiences Being A Caregiver With Undiagnosed Autism & Strengths & Weaknesses Of Caregiving With Autism, if you'd like to read those prior blog posts. The Grief We Deal With:
When my Gung-Gung decided that it was time for us to go inside, we went in a nearby door & up the elevator to get to the enclosed bridge that leads to the building that he lives in. This walk is a little far for my Gung-Gung & his favorite sitting spot is on this bridge. So, this is where he likes to take a walking break. You get a perfect view of the nursing home associated with his apartment complex from this bridge. This nursing home was where my grandma, who I called Haw-Bu, passed away. So, he feels a closeness to her when he sits there & looks at the nursing home. He & I sat in two chairs by a window with a view of the nursing home & almost immediately, he was gesturing & asking why did she have to die before him. Why did she have to leave him here on Earth? He then bursted into tears & was sobbing for the love of his life of over sixty years. It's probably been over a year since I've seen him cry like this for his wife. I came around behind the chair he was sitting in & wrapped my arms around him in a loving & a comforting embrace until he was able to collect himself. Once he let me know he was okay, I sat back down in my chair again & wrote in big letters on my whiteboard Kim♥ Gung-Gung. When I showed it to him, he smiled at me with love in his eyes. I mostly communicate with him through simple, written language now, along with some gesturing. Because his stroke caused him to acquire a condition known as global aphasia, he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language, with the exception of simple phrases written on a whiteboard. It is easier for him to understand third-person language rather than first-person language. So, this was why I chose to use my first name rather than a pronoun when talking about myself. Is There Something Wrong With Me?: In times like this, I wonder if there is something wrong with me. When my Haw-Bu passed away, I never grieved. I never even shed a single tear. In fact, all of the sadness I experienced after her passing was caused by my Gung-Gung's sadness & grief. If it wasn't for him, I wouldn't have experienced any sadness at all. How is it possible that she was my grandma & I don't miss her? There have even been times where I have wondered what it was about my Haw-Bu that my Gung-Gung was attracted to. What did he love about her? Don't get me wrong, I'm so glad for their absolutely incredible love story, for without their love story, I wouldn't exist. But, I could never relate to my Haw-Bu & many of the interactions I had with her were beyond frustrating, leaving me feeling flustered & misunderstood. I spoke at my Haw-Bu's celebration of life that my family held after her passing, but I had a lot of trouble writing the words I was going to say to my family & to my grandparents' friends. Much of the reason I spoke had to do with the fact that my brother & my cousins were speaking, so I felt like I needed to speak also. I was my Haw-Bu's oldest grandchild, as well as her only granddaughter, after all. But, how do you speak about someone who you were supposed to have had a relationship with, but didn't? I feel so guilty that I feel this way. In the end, though, my speech did make it sound like my Haw-Bu & I had a very close relationship. Many of her friends came up to me afterwards & made comments about how great it was that I had such a close relationship with my Haw-Bu. I felt like I had just lied to almost everyone in that room though, which was crushing. One thing that differentiated my celebration of life speech from the speeches of my Haw-Bu's daughters & grandsons was my speech didn't mention cooking or food. At all. My Haw-Bu loved cooking & the way she showed love was by feeding you. Food wasn't my love language. In fact, the amount of time she spent in the kitchen & the fact that she was always trying to feed me was quite annoying. This was particularly frustrating because most of the time she tried to feed me, I didn't feel like eating & forcing myself to eat to make her happy was terribly painful. I eat food because I need to in order to continue to be alive. I don't eat food because I enjoy eating it, especially because I almost never have a good appetite. I know that this isn't how most people think about food. I've always felt that if my Haw-Bu had spent a lot less time in the kitchen during visits, I would've been able to have a relationship with her. For one of my brother's birthdays when he was younger, he asked our Haw-Bu to cook him & some of his friends a Chinese feast. I wouldn't have ever dreamed of doing such a thing because I always wished she would spend quality time with me, outside of the kitchen. I wanted this from the time I was young child until she passed away & I never got it. I wrote more about how grief affects me & other autistic people in my prior blog post entitled Autism & Grief, if you'd like to read that prior blog post. Conclusion: All in all, this past Thursday was a good day. Everything went almost perfectly. I was impressed by the number of people who walked past my Gung-Gung & me sitting on the bridge who said hello to him using his name. That meant all of those people know his name even though his language abilities are very limited. (I usually spend most of my time inside my Gung-Gung's apartment when I visit.) One of the things that made my Haw-Bu hesitant about moving here was that no one here would've known my Gung-Gung before he had his stroke. But, in a building like this, he's getting much more social interaction than he ever got in his stand alone house in California. In fact, I even explained that Gung-Gung means maternal grandfather in Chinese to one of my Gung-Gung's friends who walked by. This particular friend saw the whiteboard that was lying in my lap that read Kim♥ Gung-Gung & asked me what a Gung-Gung was. I applied for disability this past December, shortly after I received my autism diagnosis. Now, the disability process is a very lengthy one. It typically takes just under a year for a decision to be made. Ever since I first applied, I have periodically been checking the status of my application via the Social Security Administration website. And I can now see that we're getting closer & closer to my application being fully processed, which brings me to what this post is about. My neighbor's son is just a few years younger than me & is also autistic. Knowing that my neighbor likely has a much greater understanding of my struggles than most people, I have gone to her for advice a few times. My mom & I had a very interesting conversation with her a couple evenings ago. Something I've never thought of until now was brought up, which I'd like to tell you about. My neighbor's advice to my mom & me was that when we're talking to people or filling out paperwork related to autism services or benefits (like disability or supplemental income), we have to remember to put the emphasis on what I CAN'T do rather than what I CAN do. She told us that she has a difficult time talking about what her autistic son CAN'T do & instinctively puts the emphasis on what he CAN do. Both my mom & I were very confused by this statement. My mom even asked my neighbor to clarify what she meant. When my neighbor kept going on & on about this, I realized that she probably had no idea that this wasn't a problem at all for me, so I interrupted her. I told her that I have the exact opposite problem. I have a difficult time talking about what I CAN do & always put the emphasis on what I CAN'T do. "Oh, so you have the opposite problem," my neighbor said in agreement. When I took a moment to pause & reflect on this conversation, I came to a realization. The difference in perspective between me & my neighbor is simply when the autism diagnosis was received. Her son was diagnosed with autism as a young child, while I was diagnosed with autism well into adulthood.
While I'm not a mother myself, I can imagine that as a mother, my neighbor wants to think positively for her son. Her positivity will then positively impact her son by making him feel loved & capable of doing whatever he wants to do with his life. For me, my autism diagnosis came from such a negative place. In fact, I believe that I wouldn't have received a diagnosis at all at this point in my life if I was someone who put the emphasis on what I CAN do. After I received my autism diagnosis, I've found myself constantly telling autism resource people about everything I CAN'T do. But, I can't remember telling anyone about what I CAN do. Sometimes, it has even led to heated, ugly arguments that have left me feeling more misunderstood, invalidated, & defeated than ever before. For example, I:
While yes, this is an extremely negative way of thinking, it is important to remember that if I didn't have such a long list of things I CAN'T do, I wouldn't be autistic. And I wouldn't have spent my entire life struggling & wondering why I am unable to get to where I want to be in life. It may not look like it from the outside, but autism is an invisible disability that really hinders what things I am capable of doing & how much of it can be done in a day. Ever since I was a child, I've had very specific limits, which include interacting with people, physical activity, & more. I've always known that surpassing those limits would cause trouble, but identifying those limits & advocating for myself wasn’t something I learned to do until I was in my upper teens. Living life in a constant spoon deficit is no easy feat, but I'm taking it day by day & trying my very best. I'd like to end this post by reiterating that while many people impacted by autism focus on what they or their loved one CAN do, it’s the CAN'Ts that are important to me. Every person is different, autistic or allistic, & we all have different perspectives on our abilities & on the life we're living. And that is perfectly normal & okay. We're all doing our very best & we're doing what works for us & that’s what matters most of all. 💙 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. 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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