Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people.
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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. 💙 Since Thanksgiving was just last week, I thought I'd spend this blog post telling you about what I'm thankful for. And no, autism didn't make the list. As I have said many times in this blog before, while many autistic people see autism as a superpower, something unique & wonderful about themselves, I see it as a hardship & a burden. Something that has very much gotten in the way of me achieving the white picket fence lifestyle I have dreamt of ever since I was a little girl. I had an interesting conversation with my mom last night, so before we move onto what this blog post is really about, I'd like to talk for a moment about Autism Acceptance. My mom made a comment about how I have accepted my autism, but I was quick to correct her. "I haven't accepted my autism. That's one of the things that I hate the most about myself & I wish it would just go away!" I said to her. "But you write all about it in your blog. You're very open about it there," my mom said. "I haven't accepted it though & I probably never will. I can write about it without accepting it. I'm open about it because I want people to have a better understanding of me. I hate my autism!" I exclaimed. "Okay, acknowledge then. You acknowledge that you have autism," my mom said, correcting the verbiage that she had been using. Yes, I acknowledge that I'm autistic. And I'm open about it, too. I'm trying to use my diagnosis to help others have a better understanding of me & to be more accepting of people who are a little bit different from them. But, accepting my autism? I'm far, far, FAR away from that. And to be completely honest with you, I can't see myself ever accepting it. I mean, autism has made my life so much more difficult than it would've been if I was neurotypical. Autism is something I want to stomp on, throw into a fire, & never see again. You get the picture. Feeling that way about my autism isn't acceptance. I wish I could get to the place of autism acceptance, but I haven't gotten there. And I don't think I ever will. What I'm Thankful For:
However, there are certain life experiences, things I have learned, & perspectives that I have that I only have because I am autistic. And that is what I'm thankful for. While I am definitely NOT thankful for autism itself, I do have a lot to be thankful for this Thanksgiving, that is related to autism in one way or another. Those things include, but are not limited to...
Today is a big day for me because it marks my one year anniversary of my autism evaluation & me getting the validation I waited precisely four months & four days for (I can't believe it!), so in celebration of that, here are some things I've learned about myself over the past year, four months, & four days:
Looking Back On Six Months Of Blog Posts!
April's Blog Topics:
The above was a statement my dad shared with me a couple nights ago. 🥰 All my life, my dad has been the one I could count on to say things like that to me, things that I need to hear. Let me tell you more about the background of this statement. My mom had recently made an appointment for my grandpa & herself to get the new COVID vaccine. Finally having convinced my dad to get the vaccine earlier than he had originally wanted to get it, she was trying to add him to the vaccine appointment group she had made for my grandpa & herself. That's when a thought came over me: should he really be getting the new vaccine then? My dad had been experiencing some kind of allergic reaction the past several days, so his doctor prescribed a steroid to help with the itchiness he had been experiencing. Now, this steroid helps with allergies & all kinds of autoimmune disorders. I know much more about this medication & how it works than I wish I did because one of my dogs took it many years ago, when he was very sick with a blood clotting problem. Knowing that this medication works so well by suppressing the immune system, I asked my parents about this drug before my mom added my dad to her appointment group. When you get a vaccine, you want the best immune response possible, so taking a medication that makes your immune system not work as well while you're getting a vaccine— that's probably not a good idea. My dad agreed with me, so he is holding off getting the vaccine until after the ten days on the steroid has passed & his immunity is back to normal. Out of curiosity, later on that night, I asked my dad if he would've thought of the impact of the steroid he's taking on his immune response to the new COVID vaccine on his own. He told me he definitely wouldn't have & he would've just gotten the vaccine on an earlier date, like my mom & I wanted him to. Feeling happy with myself for speaking up while trying to be humorous at the same time, I said something along the lines of, "See, sometimes having an immune- & germ-obsessed daughter can be beneficial!" If you'd like to read more about my experiences being a germaphobe, please feel free to go back & read my blog posts about how the coronavirus pandemic turned me into a "normal" person & how vestibular sensitivities effect my daily life. I then talked more about how he can thank my obsession with germs & the immune system, as well as my dog, Teddy for my knowledge about this steroid. If it wasn't for Teddy's illness, I wouldn't know so much about how this drug affects your body. That's when my dad said to me, "Everything about you is a blessing to me." No one's ever said that to me before, so my immediate reaction was that my dad was just being sarcastic again. I was sitting there talking about the immune system & my germaphobic tendencies, so hearing that that was a blessing really caught me off guard. I mean, I don't consider that a blessing to ME (it's so hard to live that way), so how could it be a blessing to someone else? Germaphobia is a BIG part of who I am. It turned out that my dad was being 100% truthful in that moment & wasn't being sarcastic at all. "Everything about you is a blessing to me." That was something I needed to hear. If you love me, tell me. If you're proud of me, tell me. If I look pretty, tell me. If I'm doing things right, tell me. If you love that design I just created, tell me. If everything about me is a blessing to you, tell me. I need to hear all those things & more. I've gone my whole life with terrible self-esteem & being super dependent on validation from others. Every positive thing you think about me: I need to know about it, I need to know how you feel. That's what keeps me going & I know that that's also why words of affirmation is my love language. What Are The Love Languages?:
The term love language refers to the way that a person prefers to express & receive love. While the term was first introduced to us by best-selling author, speaker, & marriage counselor Dr. Gary Chapman, the term is used more loosely today, referring to love that is expressed between romantic partners, family members, friends, & more. In Dr. Gary Chapman's best-selling book, The 5 Love Languages: The Secret to Love that Lasts, he proposed five specific love languages, which are:
If you'd like to learn more about the five love languages, you can visit Dr. Gary Chapman's love language website to take quizzes to learn more about yourself, as well as to take a look at other resources & videos he has available, all of which provide valuable insight. 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. 💙 Donald Triplett (otherwise known as Case 1), the first person in the world to ever be clinically diagnosed with autism, lost his battle to cancer last week, at the age of 89. (Donald Gray Triplett's obituary) Don lived the entirety of his life in the rural town of Forest, Mississippi & was blessed to live in a community where he was nurtured, accepted, & loved by all who knew him. He was accepted for being exactly who he was, differences, quirks, & all, & was often described as "a great guy" by others who lived in his community. Don was a deeply introverted child who did not respond to his parents' gestures or voices, did not play or interact with other children, had his own way of using the English language, had a fascination with spinning objects, & was very distant from others, living in his own little world apart from his family & the rest of society. However, Don also had many special abilities, was extremely intelligent, & was always listening & learning. His interests included number patterns, music notes, letters of the alphabet, & the presidents of the United States. According to his father, when he was only a year old, Don "could hum & sing many tunes accurately." At two & a half years old, he sang entire Christmas carols, in perfect pitch, that he only heard his mother sing once. He could also perform rapid two & three digit mental multiplication, giving you the answer faster than you could get it on a calculator. However, this did not prevent him from being institutionalized. Don grew up during a time where doctors ordered parents of children who were not "normal" to put their children in an institution. This was so that the parents could try to forget their child & move on with their lives. So, this is what Beamon & Mary Triplett did in August 1937, when Don was just three years old. However, his parents visited him monthly & absolutely did not forget about Don. Despite the institution’s director trying to talk them out of it, Don's parents pulled him out just one year later, in August 1938. They recognized Don's gifts & wanted to do what they could to help their son live a happy & productive life. His parents first brought Don to Baltimore to see Austrian child psychiatrist Dr. Leo Kanner in October 1938. After several more visits with Don & seeing more children with similar behavior patterns, Dr. Kanner diagnosed Donald with autism in 1943. Donald was the first person in the world to receive this diagnosis, leading the world in the study of the complexities of autism & offering hope to families. Not only did Don graduate from high school (where he was accepted by his teachers & classmates); but in 1958; he graduated from Millsaps College; in Jackson, MS; where he was a part of the Lambda Chi Alpha fraternity & studied French & math. Don learned how to drive in his late-twenties, worked at a local bank that was partially owned by his father for sixty-five years, & lived in his own house (the house he grew up in). His hobbies were playing golf (which he did every day) & traveling by himself around the world. John Donvan & Caren Zucker interviewed Donald Triplett & those who knew him, chronicling his life story for an article in The Atlantic entitled Autism's First Child. In the video below, the authors tell the story behind their article, including how the tracked Don down.
Don was later featured in the book, In A Different Key, which was later adapted into a PBS documentary.
I have to begin this post by saying that I am so lucky, being someone who has felt so loved & so supported, particularly by my family & close friends, throughout the entirety of my autism diagnosis journey & beyond. I know that many, many people who receive diagnoses as adults, or even as children, are not as lucky as I am & are forced to find their footing in this neurotypical world on their own. Going off of that, a couple of days ago, my best friend texted me an article about the rise of neurodiversity at work. Interestingly, several weeks before, my cousin had emailed me a different article on the same topic, that was included in her work's most recent newsletter. Both articles were very similar, making very similar points about employers being more accepting of autistic & neurodiverse employees now, more than ever. The articles even made statements regarding how in certain aspects, neurodiverse employees add more value to a company than neurotypical employees do. However, when I read articles like these, what I'm seeing is that while we're definitely in a much better place now than we were before, significant changes still need to be made in the workplace & beyond. I had an interesting conversation via text with my best friend I'd like to share with you & that's what today's topic is about. Let's Step Away From The Technology, Mathematical, & Science Industries For A Moment: When you think autism, you generally think Dr. Sheldon Cooper in The Big Bang Theory or Dr. Shaun Murphy in The Good Doctor. I mean, this autistic stereotype is clearly illustrated within their characters, after all. Both articles that were sent to me mentioned this stereotype. My view on this is that articles written about this add to our already existent stereotype, rather than combatting it, which is what we really need. For example, the article my cousin sent me stated that, "Employers have begun to realize that individuals with autism are assets to the company, especially in the engineering and technology industry, where skills such as attention to detail, extended focusing, and mathematical concepts are in demand." On the other hand, the article that my best friend sent me mentioned that some industries, like tech & finance are moving faster than others when in comes to neuroinclusion. While I think that's great, what I'm more interested in are the other industries. Personally, I am someone who would not thrive in any of the stereotypical autistic industries. While I thrived in algebra & statistics while I was in school, I am not a technical- or a mathematical-oriented person. To be totally honest, I inputted numbers into formulas to get the answers because my teacher or professor told me to, but I never understood why I was doing that. And I was never required to remember the formulas I learned because having notecards for tests was an accommodation I had in both high school & college. Autistic people can also be extremely creative, be talented writers, & be great with animals. I can tell you that this is where my personal talents lie. Several industries autistic people tend to thrive in are journalism, animal science, pet grooming, animal care, filmmaking, videography, animation, photography, & graphic design. In elementary school & middle school, I spent my free time writing poetry. In high school & college, graphic design was my hobby. Even though I didn't write poetry as often when I was older, I often still used it to express my feelings. We don't hear about the link between these particular industries & autism often... or at all. What I'm interested in is how THESE industries & other industries outside of the technology, mathematical, & science fields are embracing autistic people & becoming more inclusive. Where These Autistic Stereotypes Came From:
I believe that these autistic stereotypes were created because there are so many undiagnosed autistic females. The technology, mathematical, & science industries are all male-dominated fields. So, of course if undiagnosed autistic females work in other fields, people are unaware of autism's presence outside of the tech bubble! A great illustration of this occurred shortly after I had a conversation with my physician about the fact that I am likely autistic. In my quest to learn more about autism & about myself, I purchased the book, I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults. When I finished reading it, I gave it to my dad to read. After my dad read the autistic traits section of that book, he told me he knows many people who are like the type of person Cynthia Kim is describing. My dad was an engineer for over twenty-five years, so I'm sure that many of his former colleagues are autistic. Engineering is one of the fields that fits that autistic stereotype. Also, after everything I have learned about autism over the past year, I believe that my dad is autistic himself. Where This Leads Us: While it's great that more & more organizations are willing to talk about & accept autism & neurodiversity, there clearly is significant work that still needs to be done. It is time for all industries to be more inclusive & welcoming; but I am most interested in what the industries outside of the technology, mathematical, & science fields are doing to achieve this. 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. Being that today is Teacher Appreciation Day, I thought I would share some of my former teachers' thoughts & memories of me back from when I was a student. I have always respected & admired my teachers & really valued their opinions. I was really surprised that so many of these teachers remembered such details about me when I was in school so many years ago. Reaching out to so many people who were a part of my life growing up was one of the things I did during the self-discovery process that I thought was so worthwhile. I learned SO much about myself from emailing & chatting with my former teachers. I never asked my teachers what they thought of me when I was a student in their classrooms, so asking them this question now gave me really valuable perspective, as you'll see below. I did omit my teachers' & school names to keep my & their privacy safe & secure. 💕 Email From Seventh Grade Language Arts Teacher on August 8, 2022
What a pleasant surprise to hear from you! Yes, I do remember you from Middle School Name. I remember a very kind, shy, reserved student (with black-framed glasses, if I recall correctly) in my Language Arts class. In reading the notes you've shared, I do remember what a hardworking, diligent student you were and that earning top grades was very important to you. I see that I commented that you were "not good with being caught off guard," experienced frustration with group members who are fooling around, and that you interacted better with adults than with peers. I'm so sorry to hear of the challenges you've been experiencing for so long. I wish that I could add more detail to what I remember about you back in 7th grade, but I'm afraid that these meeting notes cover what I can recall. Although I unfortunately don't think I have much to add to the information you've shared with me, I'm happy to chat by phone if you'd like. Just let me know and we can arrange a time. Thank you so much for having the courage to reach out to me, Kim. It was wonderful hearing from you! We did have a phone conversation back in August & chatted a couple more times after that as well. This teacher is no longer a middle school language arts teacher, but is a middle school special education teacher in a different district now. I truly believe that special education is her calling, what she was meant to do with her life. Those conversations I had with her helped me immensely, more than I could ever convey to her (even though I tried). Thank you so, so much for being there for me & for truly listening to what I had to say in such an overwhelming time for me. This teacher is truly an illustration of why teachers are so incredible & so amazing. I was a student in her classroom about twenty years ago & she still made time for me during a time that I was learning so much about myself & was going through so much. At the time I sent her my initial email; I wasn't sure if that was the right thing to do or if I was making a fool out of myself; but after emailing, texting, & conversing with her; I knew that reaching out was the right thing for me to do purely because her kindness, compassion, & helpfulness meant so much to me. It helped me to have the strength to go through all that I was going through while I was discovering so much about myself. I could never thank her enough for her kindness & time. Email From Seventh Grade Science Teacher on August 12, 2022 Wow! So great hear to from you. I am sorry to learn that things have been challenging for you, but am impressed by your perseverance to uncover more information about yourself. In thinking back to seventh grade, I remember you as being a quiet, shy student. You always worked so hard on your assignments, often going above and beyond what was expected of you. I also remember that when we had special activities or field trips, you liked to have your mom join us. I am not sure I can offer too much more than what you have already learned from the notes and speaking with Teacher's Name, but it seems you have a pretty clear picture of your middle school self. I wish you the best of luck on this journey of self discovery. I ran into this teacher while I was walking my client's dog a couple weeks ago. It was really great to see & chat with her in person as well! I have such fond memories of being her student about twenty years ago. Email From Second Grade Teacher on August 15, 2022 Thank you for reaching out to me. I am sorry to hear that you are experiencing some health issues and hope that you are able to resolve them as soon as possible. And while it's been a very long time since you were in my class and I can't recall every detail, I do have some clear memories of you. Yes, you were a very quiet and shy child. You seemed quite content to keep to yourself, and not too interested in other children. Making eye contact and initiating conversations weren't things you did often. Lately, more often than not, there is a student in my class who is on the spectrum. Each one has his or her own characteristics - but one common denominator I've witnessed is that students often are super-focused on specific things. For you, it was the love you had for your bunnies! Books you read and stories you wrote were all about bunnies. It sounds like you are doing all the right things to determine what's going on. If you receive this diagnosis, I wouldn't be surprised. I know I haven't added much to what you already have stated but if there's anything else I can do to help you, please let me know. Email From Middle School Physical Education Teacher on August 15, 2022 Thanks so much for the message! Of course I remember you!!! You are in your thirties?!?!? I'm getting old! I appreciate the kind words you gave me. Thanks so much. I remember you being very shy to start. I was informed of your dislike for PE so I was going to change that!!!! I remember you being stubborn!!!! I would try to get you to do some things that you would just not do!!!!! I do remember getting you involved in an asteroids game in which people could get back in ONLY if you throw them an asteroid!!! I was so proud of you for participating. Everyone was calling for your help!!!! Unfortunately, he wasn't able to change my dislike of PE, but he did make a huge difference in my experience in it. His kindness & compassion made it so that PE wasn't nearly as frightening as it was in all other grade levels. When I look back on PE, I have traumatic memories of PE in all grade levels except for middle school. The reason for that is because of his kindness, compassion, & the extra time he took with me. Quotes From Phone Conversation With High School Special Education Teacher on August 23, 2022 "I can totally see what you’re saying, especially looking through your early childhood development & some of the comments that teachers made & even your dad saying that it was something in the back of their minds. I can definitely see where your primary care physician may suggest that you look into that." "Definitely now that you’re saying that you’re looking into traits that you may have exhibited that you know to be in that autism checklist, I definitely remember you being very bright & artistic, creative. You definitely needed to be pulled out if you had a question or a concern, you weren’t always comfortable expressing that. Or advocating for help with your teachers. I saw over the four years, you became much more comfortable as time went on. And as you became comfortable with me, it definitely was easier for you to ask for help & advocate for yourself." "You tended to be very withdrawn when I first met you & then definitely came out & advocated a bit more junior & senior year. And people around you also made a big difference. I noticed that depending on who was in the classroom with you, who was in your skills class, & who was seated around you, that definitely had an impact on how comfortable you were, even making eye contact or joining in a conversation." "There were some times where I would think, "Aww, she’s just not comfortable in here" & I didn’t know if it was who you were sitting near or just the class in general. And then other times, I was just so happy because you seemed more at ease & I felt like you would ask for help or accept help more readily, depending on your surroundings & who was in your class." "I would not be surprised if you received this diagnosis. I feel like if you came into high school now, just from what I’m remembering, we would have a lot of red flags, where we’d say, "Oh, well, let’s look at this & let’s connect with Kim’s doctor" & we’d look back at your history, your educational history, whether you hit those milestones, things like that. I’m definitely not surprised that your doctor brought that up & I’m just so glad that you’re pursuing this because I think it will make a huge difference." Email From Freshman Year English Teacher on September 11, 2022 Yes, I absolutely remember having you as a student- it's so nice to hear from you! However, I am very sorry to hear about your medical struggles. It must be so frustrating to have had to deal with those for so long without having any clear answers as to the causes and the remedies, so I think you're doing the right thing in getting evaluated for the possibility of having autism spectrum disorder. What I do remember is that you were one of the best students in my class: very intelligent, and an excellent writer and reader. Yes, you were shy and quiet, but I've taught lots of students who were the same way, so your traits didn't seem out of the ordinary to me at the time. Please know that I always thought very highly of you and you made quite a favorable impression; that's why when I saw your name on the email, I instantly knew who you were. Sadly, I would not be able to say the same for many of the other students from the 2005-2006 school year. Email From High School Art Teacher on September 11, 2022 Of course I remember you :). It is good to hear from you. I remember you as a very hardworking and conscientious student. You cared about doing well in school. You were always well behaved and a pleasure to have in the room. Thinking back, I would describe you as a quiet student. You did not initiate many conversations. However, you were not afraid to come talk to me if you had something on your mind. I am not sure if I would describe you as shy or just quiet. Sometimes those two characteristics might be hard to differentiate. Feel free to contact me any time. I am happy to give you any information that I can remember. Quotes From Phone Conversation With Eighth Grade Algebra Teacher on September 12, 2022 "It was a long time ago, but I do remember you & I do remember you were a very diligent, excellent student. You always tried hard, but you were a little bit more to yourself. I do remember that you weren’t super social, you were very focused on school, the academic part of school & not so much the social aspect. That’s what I remember, Hun. That’s kinda what sticks out & I remember you were very sweet, nice, lovely, hardworking student, but I do remember the social piece, as being maybe more of a struggle." "I’m not surprised to say that’s something you’ve felt about yourself & there’s so much to the autism spectrum. I do kind of see that you could’ve fit that description of someone who really, the social part really was more of a challenge. And, I was a young teacher back then, I was just maybe ten years older than you, so I was kind of paying attention to the social thing." Email From Fifth Grade Math & Science Teacher on September 28, 2022 It is so nice to hear from you! Of course I remember you! Thank you for reaching out and sharing your story with me. It sounds like it must have been a long road and I applaud you for continuing to look for some answers. I remember you as a very quiet girl in 5th grade. You didn't talk very much, but would respond with body language. You had a great smile and you smiled a lot in response when someone was talking to you. You presented as someone who was very shy and walked down the hall typically next to an adult. I also remember your movements and work completion was in a much slower manner than others. I used to think that you were just taking things in and processing them. Please feel free to reach out at anytime. 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:
As I talked about earlier in this blog, when I received my autism diagnosis back in October 2022, I knew that I wanted to share it, as well as my experiences & my knowledge in order to spread more awareness & acceptance of autism & the many ways it can look. However, what I was not aware of was how rewarding & fulfilling that would feel, thanks to the unbelievable amount of love, positive responses, & support I received in return. As I was reading about autism disclosure & what other newly diagnosed autistic people went through, whether in autism books or memoirs or posts in autism support groups on Facebook, I have to admit that not knowing how people would react to this news was quite scary, especially after reading about other people's disclosure experiences, some which were pretty horrible. However, I knew that I wanted to "come out" as autistic to people. (Yes, coming out isn't just for sexual orientations & is also a term used for other aspects of life. Autistic people "come out" as autistic (or disclose their autism) if they so choose as well!) I felt like I had been misunderstood my entire life & I wanted people to get me, to understand me. Autism would explain all of my quirks, all of my difficulties, from early childhood through adulthood. However, I knew that there was a huge risk that I would get reactions that would be inappropriate, upsetting, make me uncomfortable, or all of the above. Before the idea of starting a blog even came to mind, I shared my struggles & my diagnosis with roughly eighty people, from all different aspects of my life. I began with telling family, close friends, former teachers, neighbors, & people I interact with on a regular basis. Later on, as I gained more comfort, I expanded the circle of people who knew to even more neighbors, my parents' friends & colleagues, & people who I went to school with, many who had to have been aware of the intense bullying I experienced all throughout my educational journey. I was extremely surprised that out of those eighty-ish people I "came out" to, only one of those people reacted in a way that made me uncomfortable. I was the most worried about this particular person's reaction, but it was a family member that in the goodness of my heart, I felt that I couldn't exclude due to sharing this news with everyone else in my family. I began writing my autism disclosure email in early September 2022. This was roughly a month & a half prior to receiving my autism diagnosis & roughly three months before being ready to send this email out for the first time. I sent this email out twice, to two separate groups of people & posted a similarly-worded Facebook post as well. I reread & revised this email almost everyday from the time I wrote it until I actually sent it out (a definite autistic trait). I received SO many compliments about how well-written this email was from those who received it. Multiple people told me they read it once & then reread it again & again. I was told many times from a multitude of people that I am such a talented writer. This is something that was true from the time that I was a child, as well. From rereading notes written by my former teachers, my elementary school, middle school, & high school teachers all seemed to agree that written communication was a strength of mine while verbal communication was a weakness (another autistic trait). As a child, it was easier to write a poem about how I was feeling than to just say it. Now, it is easier to write a letter or a blog post about how I feel than it is to talk about it.
The decision to start a blog was the result of how people reacted when I shared my struggles & my diagnosis with them, how rewarding & fulfilling that felt, as well as being complimented so many times about my writing. I wanted to branch out a little further by starting an autism acceptance blog & online boutique to help make a difference in the best way I know how: through writing & design! My background is in graphic design, but being complimented so many times about my writing solidified that going down this completely new avenue & combining these two things might be worth exploring because of my newfound passion for autism advocacy, as well as employment-related difficulties (which I now know is due to being autistic). This winter, during a deep & lengthy conversation about my struggles & my experiences I had with one of my neighbors, she told me I should write a book. At this point, I'm unsure about whether or not I'll get to the point where getting a book of my own published is a realistic goal, but I shared with my neighbor that I have been working really hard on getting a blog up & going with the goal of launching April 1st, just in time for Autism Acceptance Month. This blog would be a great step towards writing a book if that is something that is in my future. I am so excited to see what the future holds for me, but I am even more excited that you are coming along for the ride! I had a blog topic planned for today, but due to a phone call I received yesterday afternoon, I'm straying from it & blogging about something totally different (which is difficult for autistic people to do) instead. So, let's talk about autism resources! When you get an autism diagnosis, the next step is typically... you guessed it... resources! The resources that come after the diagnosis are SO overwhelming! Or, at least that's how it was for me. I decided to post about this instead of my planned topic because my vocational rehabilitation counselor called me yesterday afternoon to check in. There were multiple resources I applied for once I had my diagnosis. One of the resources I applied for was vocational rehabilitation services. What Is Vocational Rehabilitation?: Vocational rehabilitation is a process that helps people with lifelong & acquired disabilities find, get, & keep meaningful employment. All states have vocational rehabilitation services, but they might be called different things depending on the state. Now you know why this is so overwhelming for me. I have mentioned multiple times throughout this blog that anything & everything relating to employment causes intense amounts of stress & anxiety for me. The last time I had seen or spoken to my vocational rehabilitation counselor was back on Thursday, February 9, 2023; when I had my initial in-person meeting with him. That was roughly two months ago. During that meeting, I explained some of my anxieties involving employment & also showed him what I had done so far with my Splashed With Water website. Back in February, this website looked nothing like it looks now because it was not nearly as far along as it is right now. It was also not a live (or published) site at the time.
During today's conversation with my vocational rehabilitation counselor, I shared with him the link to this website, which he took a peek at while speaking with me. From what my autistic self could tell, he seemed quite impressed & asked if he could share it with the rest of the office. Of course, I gave him permission to do that. I also told him to be sure to let me know if any of his colleagues had any thoughts or feedback regarding my site. He then asked me what I actually wanted him, as my vocational rehabilitation counselor, to help me with. What I actually wanted to outcome of the vocational rehabilitation services to be. To be completely honest with you, that was a difficult question for me to answer. What I told him was that I think the traditional, corporate-style job is the safest choice & the choice that everyone who loves & cares about me wants me to make. However, I personally feel that that is not the best choice for me personally due to the fact that I think it could very likely be detrimental to my mental & physical health & wellbeing. I told him that what I think the healthiest thing for me to do is to focus on this website & make this new business work for me. Was that the right answer? I don't know, but I'm trying to figure it out. What I can tell you though is I really hope this business works for me. I can feel the burning passion inside of me as I type this blog post out. 🔥 Multiple times throughout this blog, I have referenced the three levels of autism, but what exactly do the levels of autism mean? And what's the difference between them? Let's get into that right now. Each person who received an autism diagnosis after May 2013 (when the DSM-5 was published) was diagnosed with level 1, level 2, or level 3 autism. The difference between the levels is simply the level of support that a person needs in his or her daily life, with level 1 autistics needing the least amount of support & the level 3 autistics needing the most amount of support. I am a level 2 autistic, so that means that I fall right in the middle. Level 1 Autism Spectrum Disorder:
Level 1 autism was formerly known as Asperger’s syndrome, high-functioning autism, or the mildest form of autism. It is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Although there isn’t just one set of characteristics that level 1 autistic children AND adults have (remember autism is a spectrum with a very wide array of characteristics), there are some traits & experiences that level 1 autistics tend to have in common:
Level 1 autistic people might also experience depression or anxiety that is the direct result of social difficulties. They also tend to get bullied or left out of social situations, which can lead to mental health issues & difficulties later in life. I personally experienced very severe bullying from early childhood all the way through college, with the worst of it being in my mid-teens & beyond. I will get more into this in a future blog post. Level 2 Autism Spectrum Disorder: Level 2 autism is where I fall on the autism spectrum. This level is in the middle of the spectrum & usually requires substantial support for independent & successful daily living. Level 2 autistics tend to experience all of the level 1 characteristics, but to a greater degree. They also might have more noticeable stimming behaviors (sometimes called restricted or repetitive behaviors). Stimming isn't something to get rid of unless it causes harm to the autistic person or to the people around them. Hair pulling, biting, slapping, & banging the head against something are all examples of harmful or dangerous stims that should be gotten rid of or exchanged for another stim that isn't harmful or dangerous. Level 3 Autism Spectrum Disorder: Level 3 autism was formerly known as low-functioning autism or severe autism. However, it is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Level 3 autistics require very substantial support for daily living. This means that they would benefit from more assistance & more accommodations at home, at school, at work, in the community, in relationships, etc. in order to live as independently & as successfully as possible. Level 3 autistic people may also need a lot more supervision, even in adolescence & adulthood than level 1 & level 2 autistic people do. Level 3 autistic children AND adults tend to experience all of the level 1 & level 2 characteristics, but to a much greater degree. Some other common characteristics of level 3 autistics are:
Final Thoughts: The levels of autism are the medical community's way to help clarify the needs & abilities of autistic individuals. It is also important to remember that individuals across all areas of the autism spectrum have amazingly unique strengths & abilities that neurotypicals often do not have. We need to remember to recognize & support these strengths & abilities as well. Regardless if someone is a level 1, a level 2, or a level 3 autistic person, all autistic people experience this world very differently from each other. We all may struggle with daily living, but in very different ways. 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. When you think of autism, chances are, colorful puzzle pieces come to mind. However, there is great controversy among the autism community regarding the use of puzzle pieces in relation to autism. Many autistic people, myself included, dislike using puzzle pieces to symbolize autism. In fact, I even educated my mom on this very important issue just a few days ago. When I was talking with her about my plans for Splashed With Water, she asked me if I was going to be creating designs with puzzle pieces. She was surprised to learn that I wasn't & that is one of the things that is going to make my business unique. Because many autistic people don't like what the puzzle piece symbolizes, I wanted to create a place where autistic people would be able to shop for autism acceptance items that align with their beliefs. (With the exception of one puzzle piece design, which shines light on the fact that we are people, not puzzles that need to be solved.) My mom works in an elementary school where people wear puzzle pieces during the month of April in support of those in the autism community, so she was confused about why puzzle pieces would be worn at her school when so many autistic people dislike its use. One of the reasons I wanted to create this blog & boutique is to solve issues like this, by sharing how one autistic woman thinks & feels. The History of The Autism Puzzle Piece:
The Meanings of The New Autism Symbols:
I have lived my entire life feeling unwanted & unaccepted. I didn't know I was autistic for almost thirty-two years of my life. Before, I didn't know why I wasn't accepted, why I felt so different from everyone around me. Now, it all makes sense to me. People are generally not accepting of people who are different from them. We need more love & acceptance in this world, not just towards autistic people, but towards everyone. If I had felt loved & accepted, my life experiences from my early childhood through adulthood would've been drastically different, in a very positive way. Autism advocates have been using the term acceptance rather than awareness for over a decade, but it took many years for the terminology to formally change. The month of April, formerly known as Autism Awareness Month, was renamed Autism Acceptance Month by the Autism Society of America in 2021. This is because we don't need you to be aware that we are here. You are already aware that we exist. We need you to accept us for who we are, our differences, our strengths, our weaknesses & all. We need you to accept that we are here. We need inclusion, acceptance, & love, not just in April, but the whole year through.
Autism spectrum disorder is a lifelong neurodevelopmental disability caused by differences in the wiring of the brain that often cause difficulties with social communication & interaction. It also can cause restricted or repetitive behaviors or interests. Autism is referred to as a spectrum because there is such a wide array of traits & it has a unique effect on everyone. No two autistic people will exhibit exactly the same traits or behave exactly the same way. There isn't any one single way that autism should look & for many people who know me personally, I am not their image of what autism looks like. When I "came out" as autistic to a member of my family, she asked me how being autistic affects my life. My autism affects every aspect of my life, from my social interactions to my relationships to how I communicate to my physical movements to my habits to my interests to my sensory sensitivities & more. There isn't a single day that goes by that I am not reminded in one way or another that I am autistic. I am still in disbelief that almost thirty-two years of my life went by before I knew this crucial information about myself.
Neurodivergent people are people who's brains are wired differently than what is considered typical. These people have different strengths & challenges than those of neurotypical people, or people who's brains don't have these differences. Neurodivergence embraces the positivity in these differences, bringing light to the idea that neurodiverse people have meaningful & positive insights & abilities that neurotypical people don't have. There are many types of neurodivergence, which include, but are not limited to:
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AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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