The words above were the words my grandfather, who I call Gung-Gung, was screaming as he was sitting in the phlebotomy chair earlier this week. Let's back up for a moment, so I can fill you in on what happened. I take my Gung-Gung to his blood test appointment every month. When I brought him in last month & his phlebotomist, Lindsey, told me that she was leaving, my heart sank. Yes, autistic people have difficulty dealing with change & transitions, but this was absolutely NOT why this was so upsetting to me. Lindsey is the main person who has taken my Gung-Gung's blood ever since he moved to Shrewsbury in 2021. But, not only that, she seems to be the only person who is capable of taking his blood. No joke. His veins aren't great, plus his skin is super crepey & wrinkly. She is really, REALLY good at her job, but not only that, she is really, REALLY good to him, too. Without her, what would I do?! Since I'm the one who takes my Gung-Gung for his blood test every month, this was MY problem. The last time Lindsey wasn't there (this past December), my Gung-Gung's blood test was a complete nightmare. This is what happened:
This is what happened when I took my Gung-Gung to his blood test earlier this week:
That day was so incredibly stressful. Caregiving is HARD WORK. Caregiving while you have a significant disability such as autism is even HARDER WORK. Autism impairs our communication abilities, our processing speed, our ability to multitask, & more. All of those skills are needed when you care for someone, especially someone who isn't able to care for him/herself. Later on, when I told my mom what had happened at the blood test, she told me that I was really lucky that I was able to convince the phlebotomist to draw his blood. And she was right. He was screaming, "No!" & I don't have medical say over him. But, we're there every month for the same thing, I know the phlebotomist, I know what he needs, & I know the best way to advocate for him. (In fact, there are times where I feel like I'm better able to advocate for my Gung-Gung than I'm able to advocate for myself.) Those weren't things that were easy for me to learn when my grandparents first moved to Shrewsbury, but I did it. And I'm so glad I did because it's giving me precious moments with my Gung-Gung that I'll have forever. 💙
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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. 💙 Let me clarify something first. I am trying to be cognizant of using only identity first language throughout this blog, particularly in post titles. However, I had to call myself a caregiver with autism in the title of this (& my previous) post because if I called myself an autistic caregiver, that could mean that I am a caregiver of an autistic person, which I am not. Using person first language & calling myself a caregiver with autism was the only way I could think of to ensure that my words would be interpreted correctly. Now that I know I'm autistic & I have received my diagnosis, I have a much deeper understanding of myself, of my strengths, & of my weaknesses, all which are related to being autistic. However, my abilities when it comes to caregiving haven't changed at all. Caregiving is HARD work. I had my first go at it back in the fall of 2019, when I stayed with my grandpa, who I call Gung-Gung, & was his primary caregiver for three weeks. There have been a lot of changes in my family's dynamics since the fall of 2019. Sadly, my grandma's cancer returned two more times within two years. My grandparents had been on a waiting list for an apartment in a continuum of care facility here in Shrewsbury, MA; for several years. There was an opening for the exact type of apartment that my grandma, who I called Haw-Bu, wanted, in the fall of 2020. We took that apartment knowing that my Gung-Gung was going to outlive my Haw-Bu. What was best for him was for him to live somewhere where he could live independently & where he could have frequent time with family, after her passing. We moved my grandparents in, in the winter of 2021. They lived in that apartment together for only a few short weeks before my Haw-Bu's health declined drastically. She then had to be moved to the hospital & eventually to the nursing home in the same continuum of care facility where my Gung-Gung lived. Sadly, my Haw-Bu lost her battle with cancer in the spring of 2021. My Haw-Bu wanted my Gung-Gung to live the rest of his life here in Shrewsbury, MA for a plethora of reasons, & I know that one of those reasons was me. She knew that I wanted to take an active role in taking care of my Gung-Gung who I love so much. I wanted my Gung-Gung to live close to me for my entire life & I was so excited that it was finally happening. I only wished it had happened much, MUCH sooner. I was also happy that I could care for him without leaving home & without leaving my two dogs. Let's talk about the strengths & weaknesses of autism & how they affect my caregiving responsibilities: Autistic Strengths: I Am Loyal, Compassionate, & Caring. When I care about someone, I care with my whole heart, with every fiber of my being. Having struggled socially my entire life, there are only a few people I feel this way about & my Gung-Gung is one of those people. I know that outsiders can clearly see the love I have for him because they have told me so. Love, loyalty, & compassion come naturally for me when I care for my Gung-Gung because I've had such a strong relationship with him ever since I was a little girl. That's what made care so deeply. Those things aren’t things I could ever learn & they only come naturally for me with certain people. As I mentioned in my autism & grief blog post, once I began learning more about how autism presents itself in girls & in women, I learned that people can be a special interest & my Gung-Gung is one of mine. Because my Gung-Gung is one of my special interests, his presence & his mere existence in the world, & in my life takes precedence over everything else. Because of this, I would do anything for him, that is within reason, of course. That is the definition of loyalty. I Am Persistent (when I really, REALLY want something). I am persistent, but my Gung-Gung is also. Because of that & because of the damage the stroke did to my Gung-Gung's brain, it can be hard to win with him. My Gung-Gung still thinks he knows better than everyone else. However, I keep trying & sometimes, much to my surprise, he listens to me. Because I care so much about him, I'll never stop trying until he listens. Since my Gung-Gung listens to his doctors better than he listens to my mom & me, we ask his doctors to tell him to do the things we want him to do, but he gets angry when we suggest it. For example, walking more. I attend my Gung-Gung's podiatrist appointments to communicate with his podiatrist on his behalf, due to him having a language disorder known as global aphasia. You can read more about that in my autism & grief blog post. During one of my Gung-Gung's podiatrist appointments, I brought up walking AGAIN & asked his podiatrist if he could tell him he needs to take walks everyday. I translated what the podiatrist was saying in a way my Gung-Gung could understand & surprisingly, he was receptive. So, I texted that to my mom. I suggested reiterating what his podiatrist told him when she visited my Gung-Gung that afternoon. By the time my mom visited my Gung-Gung that afternoon, he unfortunately was no longer receptive. This brings us to my next point: being literal. I Am Literal. My mom suggested that tomorrow, I go over to my Gung-Gung's to ask him how he was doing with his walking, so I did. This conversation was one of the most depressing conversations I've ever had. Not only was he not happy with me OR receptive for suggesting he do something he didn't want to do, but he was telling me over & over that he's so old & the love of his life isn't alive anymore. So, what's the point? I took the stance that walking more would make his life easier & not that it would make him live longer, even though it probably would achieve both things. When I left his apartment, I thought I didn't achieve anything. When my mom came home that evening, she told me that she found my Gung-Gung walking up & down the halls, just like we had asked him to do, when she got there for her visit. She was SO happy & gave him a great, big hug. She thought something she said yesterday must've sunk in. When I told my mom that earlier that day, I had such a depressing conversation with my Gung-Gung about walking & about the state of life he's in, she was shocked that I went over there & told me that she didn't think I was actually going to do that. I mean my mom asked me to go over there to talk to my Gung-Gung & I care so much about him, so why wouldn't I do that? I am VERY literal, after all. I Am Incredibly Detail-Oriented. Just a couple weeks ago, we had some concerns about my Gung-Gung's health. He's had a cough ever since his stroke, but he was coughing more than usual. My parents even went over to his apartment one night to give him a COVID test & to set up a vaporizer. The COVID test came out negative. The next day, I was going to take my Gung-Gung to his monthly blood test. My mom texted me in the morning to ask me if I could let her know how I think he's doing once I saw him. When I got there, I was very worried about how weak he was & this was why:
Because of my concerns about weakness, my parents ended up taking my Gung-Gung to Urgent Care after work that day. However, when I spoke to my parents when they got home that night, neither one of them noticed any unusual weakness. My mom told me that the only reason she took my Gung-Gung to Urgent Care was because of my concerns about weakness. Because of my issues with self-confidence, I wondered if I saw something that wasn't there, if my view was skewed, if I had poor judgment, etc. In the end, however, I know I was right to be concerned. When my mom got to my Gung-Gung's for her visit the next day, she discovered that he had a fall because she found him on the bathroom floor. I am SO thankful that this fall did not result in tragedy, but I also believe that this fall wouldn't have happened if he had been using his walker, which we have been trying to get him to use for more than two years. The plus-side of this? He's now using his walker. Did I notice these things because I'm so detail-oriented due to being autistic? Or was my Gung-Gung really not as weak when my parents took him to Urgent Care? I have no idea & I will never know. Adherence To Routines Is Extremely Important To Me. My two consistent responsibilities for my Gung-Gung are taking him to his monthly blood tests & attending his podiatry appointments every few months. I am absolutely committed to those two things & won't let anything ever get in the way of that, whether a job, a social commitment, or anything else. This is partially because it allows me to have much-needed time with my Gung-Gung that is so precious to me & that I wouldn't have otherwise. I Have Deficits In Relationships. Because being autistic has made forming friendships & relationships incredibly difficult, I don't have other social commitments I feel like I am missing out on due to taking care of my Gung-Gung. My Gung-Gung is my whole world & there is no place I would rather be. 🌎 ❤️ Autistic Weaknesses:
I Have Deficits With Verbal AND Nonverbal Communication. My Gung-Gung has difficulties with verbal communication due to his global aphasia while I have difficulties with both verbal & nonverbal communication due to being autistic. I also have a difficult time knowing how someone feels from his or her facial expressions, but it is usually is a bit more obvious with my Gung-Gung, since he usually yells when he's upset. It is difficult that he can't tell me how he feels though. Because of this communication barrier, understanding each other can be very difficult. I've had a lot of time to polish up my communication skills, which do not come naturally. There are two ways which I tend to use to communicate with my Gung-Gung, but I use the first way more frequently:
My Cognitive Processing Is Very Slow. When my Gung-Gung yells, he YELLS! Most of the time he yells, he yells quicker than how quickly I can process whatever it is he's yelling about. I guess it makes it a little easier that because of his aphasia, there aren’t very many words he can use when yelling. It's easy for me to tell that he's mad about something, but figuring out what he's mad about can be a challenge, depending on the circumstances of the situation. I Have Rigid & Inflexible Thought Patterns. I love my Gung-Gung SO much & the Gung-Gung who was part of my childhood valued family & loved spending time with me. Now, he's only accepting of my visits if I'm there for a reason, like to take him to his blood tests or to attend his podiatrist appointments. Plus, he wants me to leave as soon as whatever it was that I was there for is over. Visiting because I love him & I want to spend time with him is not acceptable. That really, really, REALLY hurts, especially because I know that he's always accepting of my mom visiting him. The only way I can get away with visiting him without a reason, like the reasons I mentioned above, is if I bring one of my dogs with me, both who he LOVES. I'm glad I figured out that loophole so early on, but it really hurts that he doesn't want me to visit simply because I'm his loving granddaughter. I know that the stroke changed his brain in drastic ways, but even though I know that, I just cannot accept this new reality no matter how hard I try. I Am Resistant To Change. I have had to learn that when I'm with my Gung-Gung, he's the one holding the reins. Even if I think I know what's going to happen, that might not happen. I do just fine if I have some advanced notice of whatever change is going to happen, but I don't usually get that when I'm with my Gung-Gung. If he's not in charge & things don't go his way, it usually results in him having a fit, which we all try to avoid at all costs. I Have Sensory Sensitivities. I am sensitive to certain textures & flavors of food. For example, I won't eat tofu or anything with strong flavors like things that are even mildly spicy or very sour, to name a few. If my family is having a meal with my Gung-Gung & I don't eat every single thing that is served, he expresses his displeasure in a way that makes me extremely uncomfortable. Being the people-pleaser that I am, this is very difficult for me to deal with, so I've had to figure out ways to hide that I'm not eating what he thinks is on my plate. He also gets upset if he thinks I'm eating too many dumplings or noodles, both things that I love, & he knows it. Taking Initiative & Decision Making Are Difficult For Me. When you're caregiving, taking initiative & decision making are two things that happen often. If a situation happens that I've never dealt with before, I likely won't know what to do. However, if it's something that's happened before, I'll remember what I did in the past & I'll handle it like a pro. I Have Extreme Anxiety & I Don't Handle Stress Well. I feel like no explanation is needed here. Caregiving is EXTREMELY anxiety-provoking & stressful & I don't handle either of those things well. I have so much intense anxiety all the time that I actually don't know what it feels like to not be anxious. I Am An Autistic Person Living In A Post-COVID World. There will be a future blog post about this, but while everyone around me has moved past COVID, I still haven't & I probably never will. I was extremely germaphobic at least ever since I was two years old, long before COVID existed. While everyone around me has stopped wearing masks, I still mask up if I am somewhere where people outside of my bubble are closer than six feet from me. However, if my Gung-Gung is with us & notices me wearing a mask when other people around us are not, that is not okay with him & again, he expresses his displeasure in a way that makes me extremely uncomfortable. Not wearing a mask isn't an option for me as it would cause so much anxiety that I wouldn't be able to function. While being germaphobic is common for autistic people, I have also had some illness-related trauma that definitely exacerbated my fears of germs & illness. When I first disclosed my autism to my family, friends, & some former teachers; I received the following email response from one of my mom's cousins: Kim, I’ve read and re-read your email. I was super impressed with you when you came to take care of your gung-gung and am even more impressed now. I am fascinated by your story and the extent you are taking to understand your past, present so that you can move forward. I can tell that it has been monumental for you to put a name to explain all of the struggles you have had. I’m happy for you and if you spent any amount of time blaming yourself (like we all have a tendency to do). You now know, it wasn’t you. While I was disheartened to learn the extent of what you’ve been going through, it was equally troubling to learn that your delayed diagnosis was primarily due to your gender. Another example of how these stereotypes can do real harm. But you are not focused on that, you’re focused on moving forward. Everything in your email points to that. Again, so much respect for you. Thank you for putting so much care into this message. Thank you for including me. If I have said anything that does not strike the right tone, let me know. I am processing and want to learn. What my mom's cousin is referring to in the line that I made bold, is the trip I made to my grandparents' home in California in the fall of 2019, about three & a half years ago. My grandma, who I called Haw-Bu, was recovering from having part of her tongue surgically removed due to a malignant tumor & because I had so much flexibility in my schedule, I planned to stay with my grandparents for two weeks to help out during my Haw-Bu's recovery. However, my Haw-Bu ended up having numerous complications due to the surgery & needed to stay in a rehabilitation facility to gain her strength back before she could safely live at home. So, I ended up extending my stay by another week & stayed for three weeks instead of two. Also, rather than helping out both of my grandparents, I became my grandpa's primary caregiver during that timeframe. I was responsible for the usual caregiving & household responsibilities as well has driving my grandpa, or my Gung-Gung as I call him, to & from the rehabilitation facility everyday so that he could visit my Haw-Bu. My Gung-Gung survived a major stroke several years earlier that severely disabled him, so he couldn't live in his house alone. I had turned twenty-nine just before making this trip. That is a lot of responsibility for any person, but it's especially a lot for a young person, particularly one who had so many different mental health challenges & now I know autism, as well. Let's talk about how autism, diagnosed or not, affected my caregiving responsibilities:
Social & Communication Deficits
Excessive Adherence To Routines & Resistance To Change
Interests That Are Abnormal In Intensity & Focus
Hyper-Reactivity To Some Sensory Input
Prosopagnosia
Topographic Agnosia
Grief is something that is certainly not fun to talk about, but it's part of life, & there were a couple difficult events involving my grandfather (he is doing okay!) that happened within the past few days that has me thinking about it more than usual. Just to give you a reference point, the five stages of grief are:
Those who are close to me know how incredibly important my maternal grandfather, who I lovingly call Gung-Gung, is to me. Ever since I was a little girl, he & I have had the most incredible, special bond. I love that man so, so, SO much. Back in January 2015, while on a cruise in Mexico, he had a major & devastating stroke. As a result, he acquired a condition known as global aphasia, which means that he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language of any kind. He also lost feeling on the entire right side of his body. Transition & Change:
Now, remember that grief doesn't only occur when someone dies. It also occurs when any major negative change happens in someone's life. For example, people may grieve when going through a divorce or heartbreak or if a close family member or friend moves away. I have been in the denial stage of grief for eight years & four months now (since that very day in January 2015 that the stroke occurred). Yes, as horrible as that is (it's even more terrible seeing it in writing than it has been thinking it in my head all of these years), that's the complete & honest truth. A Side-Note About Therapy: I had been seeing a therapist at the time that the stroke occurred. And I did tell my therapist how much I was struggling with my Gung-Gung's stroke, but I don't think she understood to what extent. I stopped going to therapy in the fall of that year, when I had to change to a different insurance plan that my therapist didn't accept. I haven't tried therapy again since, because my experience in therapy was that it either was extraordinarily harmful & detrimental to my mental health (the exact opposite thing that therapy is supposed to accomplish) or that it didn't make any difference at all, good OR bad. I had been through a plethora of therapists, all who, believe it or not, I wanted to strangle, before I found my last therapist who I really loved. Going through so many different therapists before finding the right one was incredibly emotionally & physically exhausting & draining & going through that multi-year process again, especially when I don't see the benefit in it is just not something I feel I have the energy or the drive for. I'll get more into my experience with therapy on another day. Now that I know I'm autistic, struggling this much with my Gung-Gung's stroke more than eight years later makes complete sense. Autistic people thrive on routine. However, transition & change are extremely difficult for us. That has to be why I'm still in the denial stage of grief this many years later. I just want my Gung-Gung to go back to being the person he was before his stroke. I mean, I know my mom wishes that too, but she has long accepted that this is her new reality, while I'm still denying that. Special Interests Particularly in autistic girls & women, special interests can be people or characters in novels or in movies. If an autistic person's special interest is a person, not only is the autistic person is going to be incredibly loyal to that person, but rejection will be particularly devastating, whether the person of interest is a friend, a romantic interest, etc. I didn't realize it until very recently, after I began learning more & more about how autism presents itself in girls & in women, but my Gung-Gung is one of my special interests. For me, this means that his presence & his mere existence in the world, & in my life takes precedence over everything else. The changes that occurred in him due to the severity of his stroke completely crushed me. And once he eventually passes away, that will shatter my entire world. The following statements are all true about my Gung-Gung:
When my grandma passed away a couple years ago, broken heart syndrome became one of my special interests. Unfortunately, I never had a relationship with my grandma, so I didn't grieve when she died. The hardest part about losing my grandma was thinking that her death would be what would kill my Gung-Gung, who I love so much. (My grandparents had an incredible love story.) I learned that the risk of a man dying of a broken heart goes down dramatically at the three-month mark, so once we hit three months, I felt an instant wave of relief. My aunt & uncle were visiting this past December & I had a heart-to-heart conversation with my aunt one night during that visit. My aunt brought up that when my Gung-Gung eventually does pass away, it really won't be that devastating because of how much he's changed since his stroke. I absolutely did not agree with her because the finality of death is so terrifying to me. Never feeling his arm around my shoulders; being able to hold his hand; or seeing my puppy, Ollie kiss him all over his face, bringing him so much joy & laughter is just not acceptable to me. It would absolutely devastate me & break my heart & wouldn't bring me any relief whatsoever. What my aunt expressed to me is how the average neurotypical person would feel, given the situation. But, what I'm expressing here is how one autistic woman feels, given that same situation. Being Literal-Minded Autistic people are literal-minded. Now, with that being said, I personally don't believe in God, in Heaven, or in any kind of afterlife. So, as morbid as that is to believe, I believe that when someone you love passes away, you'll never see that person ever again. The idea of God, Heaven, & an afterlife are just so abstract, foreign, & unbelievable in my mind that until I've actually seen proof that those things exist, I'm not going to believe in it. I know that those beliefs bring comfort to many people & I wish it did to me as well, but it just doesn't make sense in my literal mind. I know my Gung-Gung believes in Heaven & he wants to go up there to be with my grandma, the love of his life, again, but because I don't believe in it myself, I don't have the comfort he does. In fact, the idea of that actually makes me sick to my stomach. I am also someone who believes that the two things that should never be talked about are politics & religion, unless you know for sure that whoever you're talking to has the same beliefs as you. Because of the role my beliefs play in my fear of death, I thought this was important to mention, but at the same time, I want you to know that I completely understand & respect your beliefs, whatever they may be. So, I tried my very best to make this section as short & as to the point as possible. Fear Of The Unknown Autistic people like to know what to expect. In my thirty-something years of life, I have lost two grandparents & two pet bunnies. (Luckily, I have not lost any other loved ones.) I didn't grieve when either of my two late grandparents passed away. I believe that when my Gung-Gung passes, it will be the first time I would have ever grieved. And from what I know about myself & about my relationship with my Gung-Gung, I'm very worried about my ability to handle that grief. I hope that this post gave you valuable insight as to what grieving might feel like as an autistic woman. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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May 2024
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