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...
0 Comments
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. 💙 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. 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. 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! 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
|
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
All
Archives
May 2024
|