I'm going to start this blog post off by saying this: this is the most vulnerable blog post I have written thus far. Some things that are in it are things that I've mentioned before & some things aren't. But, everything in this post is as real & as raw as it gets, is one-thousand percent true, & is something that I felt needed to be said. Growing up, & even now, my life was & is a struggle. I was autistic & I didn't know it for almost thirty-two years because I grew up at a time when girls like me were just not diagnosed with autism. I was living in a world that I didn't fit into, but I had no understanding as to why that was until about a year & a half ago. I was so lucky because my parents did everything they could to give me the BEST childhood ever. And I'm so thankful for that. However, there were certain things that no matter how loving & how supportive my parents were, they just couldn't protect me from. Every autistic person you talk to will have something to tell you about how society treats her or him; about the trauma that (s)he endures on a daily basis. The way neurotypical people treat us does real, long-lasting harm. I never understood why people treated me so poorly because I didn't think I did anything wrong. Were they treating me that way because I simply exist? Probably. The bullying I experienced in elementary school through college was INTENSE, & it only worsened the older I got. From being made fun of for being too quiet to having my feet walked on top of on a daily basis to being barked at & growled at like an angry dog to boys trying to trip me in the hall & slapping my butt when I was at my locker. Freshman year in college, they put me into a quad with another Shrewsbury alum who inserted nasty things about me into the brain of another one of my roommates. They ganged up against me & made my life a living hell for the entire year. A couple years later, a different roommate suddenly gave me the silent treatment & I had no idea why, until one of her friends told me. It was because I was uncomfortable with boys sleeping over in our room, something that I thought was perfectly reasonable, especially for a quiet & a timid girl like myself. I was never given the chance to make any sort of compromise because she never told me why she was so mad. Many years later, I found out that this particular roommate now has an autistic child. What a coincidence! Being treated with such cruelty on a daily basis for so many years is extremely traumatic for us. And it often has the same types of consequences on our brains as going to war, witnessing someone get murdered, or having an abusive spouse would. It just takes a much longer amount of time to do the same amount of damage. More than 40% of autistic individuals struggle with post-traumatic stress disorder & although I have never been diagnosed, I do think I am one of them. I think that the effects of having to endure the type of treatment I described above for so many years is why it takes me such a long time to trust someone, even now, as an adult. I also never really voiced the significant amount of pain I was experiencing to my parents because I didn't want to worry them. So, I didn't get as much support as I probably needed while I was going through that. I knew I have caused them A LOT of worry ever since the day I was born & I didn't want to add to it even more. From a very young age, I wanted to do everything I could to be the best daughter I could be, even if it meant unintentionally harming myself. When I first learned from my physician that the cause of all of my lifelong struggles was due to living with undiagnosed autism, I took a couple of months to process it & to learn more about how autism affects girls & women. But, after I did that, I wanted to do more digging into my past to learn more about how autism affected me as a young child & as an adolescent. I knew that when I was in school, my mom kept a very thick manilla envelope full of documents & letters from various medical professionals & educators. Knowing how organized my mom always was, I asked her if she still had that envelope & she did. This envelope ended up being a treasure box into my past, containing a lot of information, some that I never knew about myself, from when I was less than a year old until I was eighteen years old. One of the things that really stuck out to me was meeting notes from my seventh grade language arts teacher, Peggy. Better expression in written vs. verbal. More sophisticated style of writing. Not good with being caught off guard. Interacts better with adults. Gets frustrated in groups since they are fooling around and she is so concerned with her grades. Kids aren't patient waiting for her to respond. Struggles with reading comprehension. Getting a bit better advocating for herself. ALL autistic traits. Thinking back to seventh grade, I had always thought very highly of Peggy. I wondered if she remembered anything else about me that would be helpful for me to know, going into an autism evaluation. I knew that she no longer worked in the Shrewsbury schools, but teachers' contact information is usually readily available online. I looked Peggy up & I wrote her an email explaining my lifelong difficulties & how they led to an impending autism diagnosis. I attached a scanned copy of the meeting notes to the email, as well. However, since at this time, I had been a student in her classroom just over eighteen years ago & I hadn't seen or spoken to her in at least fifteen years, I had this underlying fear that she wouldn't remember who I was. I felt like I was a fly on the wall in school, barely saying a word & blending in with the background. I knew she'd had a lot of students since then & I thought I was easy to forget. Spilling my guts out to her only for her to not remember me would've been SO utterly embarrassing. This was in early August of 2022, by the way. It was only a couple of days before I heard back from Peggy & I was beyond relieved to know that she absolutely did remember me. Peggy sounded so delighted to hear from me, too. She described me as a very kind, shy, reserved student (with black-framed glasses if I recall correctly), but she admitted that she didn't think she had much more detail to give me. However, she did offer to chat by phone. And I eagerly took her up on that. If we chatted on the phone, I might be able to foster another connection with a caring & a supportive person & I really felt like that was exactly what I needed because like many autistic people, my life was extremely isolating. This blog post is about my interactions with Peggy & how her kindness & her compassion have changed my life. Peggy didn't know this going in, but I had a lot going on in my life at the time I reached out to her, most of it not even having to do with autism. Back in 2015, my maternal grandpa had a debilitating stroke that left one side of his body without feeling & completely took away his ability to process language (this is known as global aphasia). I unfortunately did not grieve the stroke properly & still to this day, I am in denial that it ever happened in the first place. Now that I know I'm autistic, this makes total sense as we do not grieve in the same way that neurotypicals do. My grandma was his devoted caregiver ever since. The year prior to when I connected with Peggy, my grandparents relocated to Shrewsbury from California because my grandma was dying from tongue cancer. She lived here in Shrewsbury for just two & a half months before succumbing to the disease (six months earlier than expected). While I never had much of a relationship with my grandma, watching my grandpa grieve the love of his life for over sixty years & worrying everyday that he would die of a broken heart was the hardest thing I have ever had to do. At the time I had reached out to Peggy, we had recently passed the one-year mark of my grandma's passing. I was also still getting into the groove of being a secondary caregiver to my grandpa. Due to the brain damage caused by his stroke, my grandpa would often say & do things that hurt me tremendously. No matter how much I tried to remind myself that my able-minded grandpa would never say or do such things, I just couldn't get the hurt to go away. This was particularly difficult for me to deal with because my grandpa & I have always been incredibly close. His hurtful actions were a complete one-eighty from how he'd treated me for the first twenty-five years of my life. All of these things would be difficult for anyone to cope with, but when you're autistic, you're handed a plethora of challenges in life that allistic, or non-autistic people have the privilege of never having to experience. And it's those challenges that make dealing with things like this significantly more difficult. Keep in mind that I didn't know that I was autistic when all of the above events actually happened, so I didn't understand why I reacted like this, why I reacted completely differently from the rest of my family. Ever since I was a young child; I have yearned for my grandparents to live close by & I was so, SO happy to finally have that; but now that I did, my life had become a complete circus. It's something you can't understand without living it.
On the autism forefront, just a couple months ago, I had learned that the reason why I have struggled so much throughout my life was because I was living with undiagnosed autism. It was the reason why:
That first phone conversation I had with Peggy was a breath of fresh air. Back when I was her student, I remember her being really easy to talk to & that was still the case. I filled her in on a lot of things, many of those things being things that hardly anyone knows about me, things that I'm ashamed of. The fact that I even felt comfortable enough to fill her in on those things, after all this time, speaks volumes about Peggy's character, the person she is; especially since I've always felt like I need to protect myself from people; I've always been afraid to show the real me. The way Peggy reacted to the things I told her was really, really comforting. She really took the time to stop & to listen to what I had to say & she didn't make me feel judged, guilty, or like I had done anything wrong. Every time I mentioned how something made me feel, whether it was a positive or a negative emotion, she validated it. And if she suggested something that I didn't think would work, I would explain why, & that was totally okay with her, too. She also told me how much she admired my courage in reaching out to her & that she was here for me. Having that conversation with Peggy gave me the courage to reach out to many of my other former teachers, as well. And while some of those other teachers gave me much more detailed insight than what Peggy could offer me; a few even telling me that an autism diagnosis would absolutely not surprise them; it was Peggy's kindness, support, time, & most of all, her compassion that made the biggest difference to me. That was what I needed more than anything else in the world. As I had other conversations with Peggy later on, she felt that she could no longer offer me the kind of support I needed. Her experience was with adolescents & I was an adult with adult problems looking into adult resources (which I now know are scarce). However, I can tell you that this is absolutely NOT the case at all. I have gone my entire life feeling like when I talk, NO ONE hears me & my feelings don't matter. Sadly, these are commonalities among autistic people. Peggy was the first person I talked to in many, many, many YEARS who really made me feel like she heard what I had to say & she valued my opinion. Plus, she was so, so, SO kind. And she was so incredibly compassionate, too. I have lived a lifetime of people being unkind to me; being critical of everything I do or say, everything I don't do or say, every facial expression I make or don't make. So, it's extra noticeable when someone IS kind; when someone accepts me as I am; when someone ISN'T judgmental; when someone really, truly CARES. When I looked Peggy up to make that first contact & I discovered that she was no longer a language arts teacher, but she was a special education teacher, I wasn't surprised. The notes that she made about me were much more insightful & helpful than the notes I came across from every single one of my other former teachers. Every single one of Peggy's notes was so SPOT ON, about me, AND about an autistic middle school girl. However, after having the interactions with Peggy that I had, I really, truly feel that special education was what she was meant to do with her life; it was her calling. The kids in her classroom are SO lucky to have her. I know she's changing their lives because she's changed mine & it's been twenty years now since I've been her student. (Typing that out makes me feel so old!) More recently, a couple weeks ago, Peggy's mom passed away. When I found out about her family's loss, I knew I needed to go to the visitation. While I've tried to thank Peggy for what she's done for me numerous times before, I didn't think I got my message across effectively enough. There was no better way to thank her, to tell her how much I appreciate her than by going to the visitation to support her & her family during their time of grief. While I was still waiting in line, Peggy caught my eye & gave me a reassuring smile, totally calming my nerves. I knew that the only reason she recognized me was because I had sent her a recent photo of myself back when I originally connected with her. (I look A LOT different now than I did when she knew me in middle school.) That day, during what had to have been one of the most difficult times in Peggy's life, between small actions she was taking & things she said, Peggy was still blowing me away with her kindness & her compassion. When I spoke with her in the receiving line, Peggy asked me about how things were progressing. The fact that she continued to show me so much care & concern while she was grieving the loss of her mom, once again spoke volumes about the absolutely wonderful person Peggy is. As much as I wanted to express the great frustration I was feeling due to things moving slower than molasses, as well as some of the resource people I was working with not only not seeming to know how to help a late-diagnosed autistic woman like myself, but actually making things worse; I didn't. There was a line of people a mile long behind me, all waiting to talk to Peggy & her siblings. Plus, I wasn't there to talk about my personal difficulties. I was there to give her my condolences, my love, my compassion, & my support; things that she had given me a couple years earlier that meant so, SO much to me. I really, REALLY hope that I'll have the chance to fill her in on those things & more one day, at a much quieter time, when I'm not feeling like I need to give her MY support. A few days earlier, when I mentioned to my mom that I was going to go to this visitation, she told me I was very brave for going alone. (This was the first time I had ever been to, or even thought about going to visiting hours by myself-- the couple other times I had been to visiting hours, my family was with me.) In my mind though, I had no choice other than to go to this. I knew that Peggy would never expect me to be there, but Peggy made such a big impact on me recently that I really felt like I needed to go. I am SO quiet; I have a lot of anxiety when it comes to social situations, especially with people I don't know; & I'm someone who really struggles with coming out of my comfort zone. But, when I feel this strongly about something, I do it. And I was SO glad I did. When I talked to Peggy about why I wanted to be there to support her & her family & what an impact she'd made on me, I knew she was really touched by my presence. And that really warmed my heart. So, as I wrap up this very long blog post, why am I telling you all of this? Well, it's because I think you can learn a lot from what Peggy did. What she did is a very good illustration of how doing something so simple can really turn someone's whole life around. When I reached out to Peggy, I was hoping for a little bit of insight, but I got something so much more meaningful instead. She was so unbelievably kind & compassionate, giving me her time & a listening ear. Things that I so desperately needed. And that made such an enormous difference to me in the lonely world that I was living in. 💙
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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. 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'm feeling kind of sad as I type this out because my aunt & my grandma were visiting for the past several days & they left this morning. Side-Note: I tried to blog as much as I could while my aunt & my grandma were visiting, but posting blogs are very time-consuming, so I could only get one blog posted while they were here (sorry!). It takes me anywhere from one hour to several hours to put one blog post together, depending on the blog's topic. I design all graphics that go in my blogs myself & that's the most time-consuming part. The writing portion doesn't take that much time, especially since I've always been a very strong writer. If you look back on notes written from my teachers back from when I was in school, my elementary through high school teachers all seemed to agree that my written communication was much stronger than my verbal communication. That is the way I [still] feel as well & is a very common thing among autistic people. It is also one of the reasons why I decided to give blogging a try. Up to this point, the blog that took me the longest to put together was April 12th's blog, The Harm of Autism Function Labels (the linear & circular autism spectrum graphics took a very, very, VERY long time to create!). Back The Topic Of This Blog... FAMILY: My family is my entire world 🌎— they always have been & they always will be. I mean, lots of people are family-oriented, but for me, there's a bigger reason why. I know a lot of the reason my family takes up so much of my heart & so much of my world is because I depend on my family to take on roles that friends typically take on in people's lives. As sad as it is, throughout my life, I historically could never depend on friends. From having friends in general; to making plans with them & having the plans happen when, where, & how I expected them to; to leaning on them for emotional support in times of need. This is as true now as when I was a child, so because of this, my family was always extra important to me. Growing Up In Such A Family-Oriented Town... Without Family
I've lived in Shrewsbury, Massachusetts ever since I was 2½ years old. This town, & New England in general, is incredibly family-oriented. I love the strong family values that New Englanders have. Many people I grew up with had all their grandparents, aunts, uncles, cousins, etc. living less than an hour's drive from them. Many people I know who are in my parents' generation grew up in Shrewsbury themselves & also attended the Shrewsbury public schools, some having the same teachers my brother & I had growing up. Growing up in a town where so many people were surrounded by their extended family, but I didn't have that was really hard on me, & it still is. I wanted more than anything to not have to get on an airplane to see my grandpa & my aunts. Now, my grandpa lives just five minutes down the road from me, but it's because he needs my mom & I to be taking care of him. So, I can't depend on him now like I could when he was healthy. My aunts living so far away from me is really, really hard on me though; especially since I've seen how loving & supportive they have been with all that I have been going through this past year. My Aunts Are Amazing People! I have learned so much about myself & about the world that I am now a part of over the past several months. Both of my aunts are people who have been wanting to learn & wanting to be more educated about autism-related issues that I wasn't aware were effecting my life in such big ways until recently. Having the love & support of motherly figures who are not my mom has been incredible & very much needed, especially since I've been feeling like at home, it is wished that I was neurotypical, & I often feel that I do not belong, always [unintentionally] saying or doing the wrong thing. With my aunts, I can just be myself. If they have a question about something I'm doing or saying, they'll ask me about it with love in their hearts, & we can have an open & honest conversation about it without judgement being an issue. Being able to have in-person conversations with both my aunts this month & last month has been absolutely amazing. While I know that they're both there for me always, sometimes the type of love that I need can just not be achieved over text or through conversations on the phone, but is only possible in person. My aunts are doing everything right & are treating me exactly the right way without being told what to do or say, which feels so, SO good. If you have family close-by to you, please cherish them. I so wish I had what you have! And to my aunts: thank you for being so amazing 💕! Now, if you're allistic, or non-autistic, you might think that receiving an autism diagnosis, especially as an adult, would be quite crushing. Let me tell you, it's not. In fact, it's quite the opposite. At the end of my evaluation, when my evaluating psychiatrist told me that I am in fact, autistic, the instant wave of relief that I experienced was absolutely incredible & was like nothing I have ever experienced before in my life. What would've been crushing is if I went through this whole thing & I did not receive this diagnosis. Because then, I would've been like, "Now what?!" Receiving an autism diagnosis isn't like receiving other medical diagnoses. Let's take cancer for example. You thought you were a perfectly healthy thirty-something-year-old, but now they've found a malignant tumor. I'm sure if I were in that situation, that would absolutely shatter me to the core. There's nothing about an autistic person that changes when they receive a diagnosis. This is something that that person has had since birth. It's just that now, there's finally a name that can explain all of the lifelong struggles that this person has had.
I knew since mid-June, when my doctor first brought this up & I first began reading about autism spectrum disorder & what it looks like in girls, in women, & in adults, that I am autistic. Reading those articles & that literature was like reading descriptions of myself. Receiving this diagnosis was only confirming what I already knew about myself for all of these months. I will never forget the afternoon of October 20, 2022 because I was so elated to finally know for sure why I struggled for so long, why my childhood was so difficult. Why I'm having so much trouble achieving the things I should be able to achieve as an adult, but can't. Getting this diagnosis was the answer to a plethora of medical & social difficulties I've had from my early childhood into adulthood & that is a good thing. During a birthday celebration that my family threw for my grandfather this past winter, one of my mom's cousins told me that I looked much more confident than the last time she saw me, slightly less than a year ago. The last time she saw me, I didn't know I was autistic. I've never been a confident person, so I certainly didn't feel confident. But, now when I think about it, I think what my mom's cousin could've seen is the relief that just a few months prior to that party, I was finally able to understand myself on a much deeper level than was ever possible at any other point in my life. The sadness that comes along with autism is caused by the fact that I've had so many struggles throughout my life. Now I know that autism has caused all of these struggles, but I've never known a life without autism. It just took over thirty years for me to know that autism was the reason for all of the challenges in my life. Is Autism Really More Common In Males?: Statistically, boys are four times more likely to be autistic than girls, but because we know so much more about autism now than ever before, we are now questioning if it is actually more common in boys or if it is just more commonly diagnosed in boys. Since it was historically believed that autism was more prevalent in boys than in girls, scientists & doctors have focused their autism research on boys. Because of this, the diagnostic criteria for autism is modeled around male behavior. What we didn't know until very recently is that autism can look very differently in girls. Since autistic girls often have different traits that do not match the diagnostic criteria for autism, traits are easier to miss & are mistaken for other things, like shyness & social anxiety, which are much more socially acceptable in girls than in boys. Girls are also more likely to mask their autistic traits & may mimic appropriate social behaviors by copying behaviors that they see in everyday life & on tv in order to fit in. For example, many girls & women force themselves to maintain eye contact by looking in between someone's eyes rather than into them if eye contact makes them uncomfortable. (I do this until a certain level of comfort with a person is reached, which is when eye contact becomes comfortable & natural for me.) Masking is something that is much less common for boys & men to do. Girls are also often diagnosed with depression &/or anxiety, conditions that frequently coincide with autism, rather than with autism spectrum disorder itself. Because scientists & doctors just began learning about how autism presents itself differently in females within the past decade, many women in their twenties & older have just now been receiving the autism diagnoses that they deserve. Many of these late-diagnosed autistic women never presented stereotypical male autistic traits. These women tended to be evaluated for & diagnosed with autism spectrum disorder after having significant problems with things in their adult lives such as treatment-resistant mental health issues, employment, friendships, romantic relationships & more (all things I struggle with). Other women were diagnosed after their child(ren) was/were diagnosed & they recognized some of the same traits in themselves. I truly believe that the reason I was not diagnosed during childhood is because of my gender. What Does Autism Look Like In Females?:
Social Deficits
Pretend Play One of the most common traits of both male & female autism is not knowing how to participate in pretend play. However, it is more likely that this struggle will be noticed in boys because girls tend to be taught from a very young age to be little caretakers, taking care of a baby doll or a stuffed animal. Because boys tend to be not taught this, struggling with pretend play is much more obvious in males. However, I only knew how to play with baby dolls & stuffed animals. When my little cousin asked me to use her plastic horses & farm animals to engage in pretend play with her, that was a struggle for me. I would often ask my little three-year-old cousin what to say or do. My aunt bringing out a craft project for me to help my cousin with brought great relief! Special Interests One of the most common symptoms of both male & female autism is having a special interest. However, male special interests tend to be very specialized & technical, where female special interests tend to be more "normal." For females, the level of intensity of the interest is what is abnormal. Because of this, it can be harder to notice the difference between a "normal" interest & a special interest. Common special interests in females are:
Wheels Many autistic children have a fascination with spinning wheels that are on a toy truck or train, for example. However, because toy vehicles tend to be boy-specific toys & I was a very feminine girl, I didn't own any toys that had wheels other than a child-sized stroller I used to push my baby dolls & stuffed animals around in the neighborhood. Miscellaneous
Happy Easter, Splashed With Water readers! Due to the holiday, we're gonna talk about something different today: Easter egg hunts. You may ask, "What do Easter egg hunts have to do with autism?" The truth is, Easter egg hunts actually have a lot to do with autism. The reason why? I absolutely HATED them! This Is Why.
Some things that aren't talked about quite as often are the gross motor difficulties & the processing delays among autistic children & adults. I have experienced gross motor & processing delays & challenges ever since I can remember. I had fine motor challenges as well, but the gross motor challenges were definitely more of a struggle & were most definitely more pronounced. I hated Easter egg hunts because my younger brother found all of the eggs before I even found just one egg. Imagine being a little girl & how sad & frustrated that would make you. I remember one Easter, my mom pulled my brother aside & told him that she knew the Easter Bunny personally (impressive!). She told him that she talked to the Easter Bunny who said that since he hid sixteen eggs, he's only allowed to find eight because he needs to leave some for his sister to find. The reason why I still remember the exact number of eggs the Easter Bunny hid all these years later? Autism! This solved the Easter egg hunt problem, but what I remember about them is my younger brother finding all of the eggs & me finding none. I didn't know I was autistic at the time, but I know the reason for this happening was because of the gross motor difficulties & the processing issues that being autistic caused. What Is "Light It Up Blue"?: "Light It Up Blue" is a campaign to promote autism awareness. People are encouraged to wear blue clothing & to post on social media using the hashtag #LightItUpBlue to raise awareness. Additionally; landmarks around the world; such as Niagara Falls, the United Nations, the Empire State Building, the White House, & state government buildings; glow blue in support of the cause. This all sounds great, right? Not so much. Why We Shouldn't "Light It Up Blue" This April:
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 had mental health challenges all my life & quite truthfully, I cannot remember a time where this wasn't an issue. A very difficult transition to college caused my symptoms to get out of control, so that's when I tried to find a medication to help me feel better. I frustratingly wasn't able to find anything that gave me relief even by the time I was in my thirties. At my appointment with my physician in mid-June 2022, she suggested getting evaluated for autism spectrum disorder. Between trying an impressive number of medications, none of which made any difference, along with other traits my physician had noticed over time, she thought it was likely that I was on the spectrum. When my physician asked me if I met my early childhood milestones on time, if I was ever diagnosed with a learning disability, & if I experienced bullying in school, all of my answers were in line with someone on the spectrum. My physician then went onto explain that so much more is known about autism now than when I was growing up. The stereotypical autistic traits are male traits, but autism can look very different in females. Sometimes undiagnosed autism in females can look like treatment-resistant depression & anxiety (something I have struggled with for many years). When there's a condition such as autism that could also be causing depression & anxiety symptoms, sometimes medications don't work like they're supposed to. I then had an aha moment & was so thankful to have such an observant physician. I am certain that my mental health challenges coexist with autism spectrum disorder, especially since these mental health challenges do run in my family, but I learned so much that day about the cause of my lifelong difficulties. I spent the summer of 2022 educating myself about autism. I read several books about how it presents itself in girls, in women, & in adults & I connected to what was in these books on so many levels. I felt like these books were written about me because they were descriptions of me throughout my life thus far, from my early childhood all the way to what I currently experience, in adulthood.
On October 20, 2022; I received confirmation of what I already knew about myself: I am autistic! More specifically, I have level 2 autism out of three levels total. The instant wave of relief I experienced that day when the evaluating psychiatrist told me that I am on the autism spectrum was absolutely incredible & was like nothing I had ever experienced before in my life. |
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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