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:
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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 💕! Today is April 23rd, my younger brother's birthday! Thinking back, to when I was a little girl, there were two memories that could've been my first childhood memory. The only reason I don't know which one was my first memory is because they both happened the same year, at around the same time of year. One of those memories was visiting my mom & my baby brother in the hospital right after he was born & the other was visiting the house I grew up in before it was ready to be lived in. What does my brother's birthday have to do with autism?
Growing up, April 23rd was the day I disliked most & I feel really terrible admitting that, or typing that out. Now, I'm trying to come across in the best way possible because I love my brother & his birthday is definitely a day to celebrate. When we were kids, our grandparents would always come visit from New York & Pennsylvania for our birthdays too & that was always a really special treat. I would give anything for a visit from my grandparents, something I didn't get nearly enough of. The reason why I disliked April 23rd so much was because of one simple reason: having to say the words, "Happy Birthday!" to my brother when I got up in the morning. I had so much anxiety over that that it caused me to dislike that day so much. In fact, I even remember there being birthdays in the past where I didn't wish him a happy birthday at all & then I got in A LOT of trouble for it. I'll tell you this: I wanted more than anything to wish my brother a happy birthday, but I just couldn't. Like, no matter how hard I tried, I couldn't get the words to come out. At all. It was horrible because it made me feel & look like a terrible older sister & person, but having to initiate conversation first in the morning, even something as simple as wishing him a happy birthday, was an incredibly uncomfortable thing for me to do. When it was my parents' birthdays, I had no trouble wishing them a happy birthday, but when it came to my brother, it was SO dang hard & I didn't know why. Until now. There were multiple reasons why this was, but I think the main reason was the fact that he was close to me in age. It had always been very difficult for me to relate to & to converse with people who were my age. The other reason was the fact that he was just so different from me. He was so loud & rambunctious as a child that it was extremely intimidating, so the idea of needing to be the one to initiate conversation was absolutely terrifying. Even as we grew up & he became less that way, what I remembered was what he was like as a little boy, so I wasn't able to change the way I felt or reacted when April 23rd came around. Once he went off to college & then after college, when he entered the workforce, April 23rd was a much easier day for me because I didn't see him first thing in the morning, so could either text him or say, "Happy Birthday!" at the same time my parents did. Saying "Happy Birthday!" at the same time as other people wasn't an issue. It was saying it individually that was a problem for me. Now when I think back, it makes me so sad, the number of things I got in trouble for when I was a little girl & even when I was older, because we didn't know I was autistic at the time. This is just an example of one of those things. 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. No, it really doesn't. At least not in my view. That was just a fun play on words I thought of for today's topic. One of the things that is common among autistic people is their tendency for having a lot of rules & rituals that control their lives. For me personally, I don't have a lot of those, except in two very specific areas of my life. One of those areas is my dogs, which brings us to yesterday evening's frustration. Yesterday evening, my mom told me that she bought my dogs a new box of dog biscuits. Any neurotypical person would be thankful to have a mom who did that for them & I would've, as well, if she had bought the right type of treats. Now, I know how ridiculous this sounds, especially to any neurotypical dog parent who is reading this. But, & I'm not kidding; I am only one in my family who can buy dog food & treats correctly. There are very specific things I look for when purchasing dog food & treats. These Are My Rules For Purchasing Dog Food & Treats:
I don't allow my dogs to eat any dog food or treat that doesn't fit follow ALL FOUR of those rules. Clearly, my dogs eat better than I do. The particular type of dog biscuits my mom purchased didn't fit into three out of four of those rules. I know being this particular & getting this upset over a box of dog treats might seem ridiculous. But, I have done SO much dog food & treat research over the years that my dogs eating biscuits in the box that my mom bought would've been torturous for me. Feeling this way is absolutely not ridiculous for an autistic person. The next part of this situation that was upsetting was that I had to go exchange the box of dog biscuits RIGHT THEN. At six o'clock in the evening. After I thought I was home for the rest of the night. After I was already in that shopping plaza three hours earlier & needed to go the the shopping plaza again the next day, to visit a cat sitting client. Or my dogs would have to be fed those biscuits that I didn't want them to eat because there were no dog biscuits in the house & no one told me. I am extremely conservative with gas & drive with efficiency. So, driving to the same shopping plaza multiple times in the same day when I had to go to that plaza again the next day anyway made no sense to me. I tried to make sense with my mom, but couldn't. Yes, I still live with my parents. (Thanks, Autism.) So, off I went to PetSmart to exchange a box of dog biscuits. I picked out something that fit all of my qualifications, paid the $1.06 difference & drove home. When I got home, my mom happily asked me what I dog biscuits I picked out, so I showed her. This whole situation put me in a bad mood for the whole rest of the night & I am still frustrated about the tiny amount of unnecessary extra gas I had to use yesterday evening. The reason why? Anger rumination. A term I had never heard of until I knew I was autistic. It is something that a lot of other autistic people also struggle with.
What Is Anger Rumination?: Anger rumination is the tendency to dwell on upsetting & frustrating experiences that happened in the past. Why Am I Telling You This?: No, I am not telling you about this to vent about my evening yesterday. I am telling you about this because this is what it's like to be an autistic woman. I hope this helped you get a little glimpse into my life, the life of an autistic woman. I had a blog topic planned for today, but due to a phone call I received yesterday afternoon, I'm straying from it & blogging about something totally different (which is difficult for autistic people to do) instead. So, let's talk about autism resources! When you get an autism diagnosis, the next step is typically... you guessed it... resources! The resources that come after the diagnosis are SO overwhelming! Or, at least that's how it was for me. I decided to post about this instead of my planned topic because my vocational rehabilitation counselor called me yesterday afternoon to check in. There were multiple resources I applied for once I had my diagnosis. One of the resources I applied for was vocational rehabilitation services. What Is Vocational Rehabilitation?: Vocational rehabilitation is a process that helps people with lifelong & acquired disabilities find, get, & keep meaningful employment. All states have vocational rehabilitation services, but they might be called different things depending on the state. Now you know why this is so overwhelming for me. I have mentioned multiple times throughout this blog that anything & everything relating to employment causes intense amounts of stress & anxiety for me. The last time I had seen or spoken to my vocational rehabilitation counselor was back on Thursday, February 9, 2023; when I had my initial in-person meeting with him. That was roughly two months ago. During that meeting, I explained some of my anxieties involving employment & also showed him what I had done so far with my Splashed With Water website. Back in February, this website looked nothing like it looks now because it was not nearly as far along as it is right now. It was also not a live (or published) site at the time.
During today's conversation with my vocational rehabilitation counselor, I shared with him the link to this website, which he took a peek at while speaking with me. From what my autistic self could tell, he seemed quite impressed & asked if he could share it with the rest of the office. Of course, I gave him permission to do that. I also told him to be sure to let me know if any of his colleagues had any thoughts or feedback regarding my site. He then asked me what I actually wanted him, as my vocational rehabilitation counselor, to help me with. What I actually wanted to outcome of the vocational rehabilitation services to be. To be completely honest with you, that was a difficult question for me to answer. What I told him was that I think the traditional, corporate-style job is the safest choice & the choice that everyone who loves & cares about me wants me to make. However, I personally feel that that is not the best choice for me personally due to the fact that I think it could very likely be detrimental to my mental & physical health & wellbeing. I told him that what I think the healthiest thing for me to do is to focus on this website & make this new business work for me. Was that the right answer? I don't know, but I'm trying to figure it out. What I can tell you though is I really hope this business works for me. I can feel the burning passion inside of me as I type this blog post out. 🔥 Autism disclosure is a very personal issue that people within the autistic community are very divided on. Some people are very open about it & tell anyone & everyone. Others disclose in stages, disclosing first to their innermost circle, working out as more & more comfort is reached. Some people like to tell only their closest friends & family. And lastly, there are the people who like to keep their autism completely to themselves. MY Autism Disclosure Process: I personally fall into the second group of people listed above, being someone who disclosed in stages. This is how I went about it. Please keep in mind, there is no right or wrong way to disclose your autism & disclosing your autism isn't something you have to do at all.
WHY I Chose To Disclose My Autism Diagnosis: At first, I chose to disclose be better understood, accepted, & supported by family & close friends, as well as people who I interact with on a regular basis. I later disclosed to an even larger group of people with the purpose of educating them in effort to spread more autism acceptance & awareness in my community. Thinking About Disclosing YOUR Autism Diagnosis?:
Remember, there's no right or wrong way to disclose your autism diagnosis & you absolutely don't have to do it the way I did it. Some Things To Keep In Mind:
Multiple times throughout this blog, I have referenced the three levels of autism, but what exactly do the levels of autism mean? And what's the difference between them? Let's get into that right now. Each person who received an autism diagnosis after May 2013 (when the DSM-5 was published) was diagnosed with level 1, level 2, or level 3 autism. The difference between the levels is simply the level of support that a person needs in his or her daily life, with level 1 autistics needing the least amount of support & the level 3 autistics needing the most amount of support. I am a level 2 autistic, so that means that I fall right in the middle. Level 1 Autism Spectrum Disorder:
Level 1 autism was formerly known as Asperger’s syndrome, high-functioning autism, or the mildest form of autism. It is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Although there isn’t just one set of characteristics that level 1 autistic children AND adults have (remember autism is a spectrum with a very wide array of characteristics), there are some traits & experiences that level 1 autistics tend to have in common:
Level 1 autistic people might also experience depression or anxiety that is the direct result of social difficulties. They also tend to get bullied or left out of social situations, which can lead to mental health issues & difficulties later in life. I personally experienced very severe bullying from early childhood all the way through college, with the worst of it being in my mid-teens & beyond. I will get more into this in a future blog post. Level 2 Autism Spectrum Disorder: Level 2 autism is where I fall on the autism spectrum. This level is in the middle of the spectrum & usually requires substantial support for independent & successful daily living. Level 2 autistics tend to experience all of the level 1 characteristics, but to a greater degree. They also might have more noticeable stimming behaviors (sometimes called restricted or repetitive behaviors). Stimming isn't something to get rid of unless it causes harm to the autistic person or to the people around them. Hair pulling, biting, slapping, & banging the head against something are all examples of harmful or dangerous stims that should be gotten rid of or exchanged for another stim that isn't harmful or dangerous. Level 3 Autism Spectrum Disorder: Level 3 autism was formerly known as low-functioning autism or severe autism. However, it is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Level 3 autistics require very substantial support for daily living. This means that they would benefit from more assistance & more accommodations at home, at school, at work, in the community, in relationships, etc. in order to live as independently & as successfully as possible. Level 3 autistic people may also need a lot more supervision, even in adolescence & adulthood than level 1 & level 2 autistic people do. Level 3 autistic children AND adults tend to experience all of the level 1 & level 2 characteristics, but to a much greater degree. Some other common characteristics of level 3 autistics are:
Final Thoughts: The levels of autism are the medical community's way to help clarify the needs & abilities of autistic individuals. It is also important to remember that individuals across all areas of the autism spectrum have amazingly unique strengths & abilities that neurotypicals often do not have. We need to remember to recognize & support these strengths & abilities as well. Regardless if someone is a level 1, a level 2, or a level 3 autistic person, all autistic people experience this world very differently from each other. We all may struggle with daily living, but in very different ways. In my previous blog post about Autism Speaks, I briefly mentioned that my life would be so much easier I wasn't autistic & that I wish I wasn't autistic, but I didn't get into why I feel that way. Let's take a moment to get into that now. Why I Wish I Wasn't Autistic:
I know I am not like most autistic people, but this is truly how I feel about being autistic & how I think being autistic hinders my life. I would be elated if there was a cure for autism, or even if there was a medication (with minimal side effects) I could take that could get rid of my autistic traits, but, at the same time, I know that that isn't going to happen. At least not in my lifetime. I am someone who was brought up to be accepting of all people: different religions, different backgrounds, different cultures, different disabilities, etc. So, whether you are autistic or not, all I ask is that you are accepting of me regardless of whether you think similarly or differently from me. I am using Splashed With Water as a way to educate, but also to share what it's like to be an autistic woman & thinking these thoughts is part of what being an autistic woman is like for me. Now that we've covered why I DO want a cure for autism, let's talk about why most autistics disagree with me.
Why Autistics Don't Want A Cure For Autism:
You'll find that throughout this blog, my personal opinion often differs from the opinion of the autistic community as a whole. When that happens, I'll do my best to cover both sides. I hope doing it this way was helpful to you. This also shows you that all autistic people are different from one another, just like how all neurotypical people are different from one another. Part of the reason I started this blog was to use my voice to help others in the autistic population. Our voices matter & no matter how much you read about or study autism, you'll learn the most valuable information from autistic people themselves because they are the only people who truly know what it feels like to be autistic. Autistic voices have been silenced, ignored, & talked over by allistic, or non-autistic, people for decades. Sadly, this has resulted in higher suicide rates, lower life expectancies, & higher rates of PTSD, depression, & anxiety for autistic people across all levels of autism. Personally, I feel that much of the time, I am talked over or ignored, unless I'm having a one-on-one conversation with someone who is very clearly giving me his or her full attention. I know this is part of the reason I have anxiety about expressing myself, even among close family. I felt this way a very, very, VERY long time before I knew I was autistic. We DO NOT need your voices. We NEED our voices to be heard. So, please remember to stop & listen to us. It really matters & you doing that one simple thing will really make a difference. Some Other Things To Remember:
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
What Are Autism Function Labels?: Autism function labels are used by allistic, or non-autistic people, such as parents, family members, friends, caretakers & medical professionals; to describe an autistic person's abilities. If you refer to someone as having "high-functioning" or "low-functioning" autism, for example, you are using autism function labels. What Is "High-Functioning" Autism?: "High-functioning" autism isn't an official medical diagnosis, but is a term that allistic people use when talking about autistic people. When people talk about an autistic person who is "high-functioning," they are referring to someone who despite his or her autism, is able to read, write, speak, & handle daily tasks such as eating, getting dressed, & personal hygiene independently. A "high-functioning" autistic person can also live independently. People may also call "high-functioning" autistic people mildly autistic, less autistic, or something similar. These terms essentially mean the same thing as "high-functioning" autism. "High-functioning" autism is just the term that is used the most often. What Is "Low-Functioning" Autism?: "Low-functioning" autistic people are usually unable to live independently & will require support from a parent or caretaker throughout their lives. "Low-functioning" autistic people are either nonverbal or they have much more pronounced communication impairments. People may also call "low-functioning" autistic people severely autistic, more autistic, or something similar. These terms essentially mean the same thing as "low-functioning" autism. "Low-functioning" autism is just the term that is used the most often. How Are Autism Function Labels Harmful?: Autism function labels are harmful because they cause ableism, or the discrimination of disabled people. How Autism Function Labels Harm "Low-Functioning" Autistics
How Autism Function Labels Harm "High-Functioning" Autistics
What Does the Autism Spectrum Look Like?: Many allistic people would be very surprised to learn that the autism spectrum is NOT linear & the below image is absolutely NOT what the autism spectrum looks like. The autism spectrum looks more like this ↓. More specifically, this graphic is what MY autism spectrum looks like because it illustrates my specific abilities, as well as my challenges. As noted below, the more white space a particular area of the spectrum contains, the more I struggle with that particular situation or activity & vice versa. You will not be able to find another autistic person out there who's spectrum looks exactly like this because each & every one of us is different from one another. What Terminology Should We Use Instead of High-Functioning & Low-Functioning Autism?: Instead of calling us high-functioning or low-functioning, please simply call us autistic or if you need to be more specific, refer to us an autistic person with low support or high support needs. This makes us feel less judged about who we are as people, but still lets caregivers, teachers, or employers know what to expect in terms of how much support & what type of accommodations we may require. What Is Asperger's Syndrome?: No longer an official diagnosis, Asperger's syndrome is an autism spectrum disorder where a person has normal language & cognitive abilities, but has difficulties with social interactions & repetitive patterns of behavior & interests. Aspies, as individuals diagnosed with this syndrome call themselves, may struggle with conversational skills & nonverbal communication (e.g. eye contact, facial expression, body language, etc.). They also tend to have a narrow or intense focus on particular interests. The History of Asperger's Syndrome: Dr. Hans Asperger was an Austrian pediatrician who during World War II, sent nearly eight hundred children to Spiegelgrund, a special children's clinic in Vienna where children who were mentally ill or physically disabled were incarcerated, tortured, starved, & often murdered due to being deemed inferior or worthless by the Nazis. Asperger kept four highly intelligent, but socially awkward & physically clumsy children alive because they were higher functioning. These children were deemed worthy of survival, so that they could be studied. This is also why autism function labels (e.g. high-functioning autism, low-functioning autism, mild autism, severe autism, less autistic, more autistic, etc.) are harmful & should no longer be used. I will get more into autism function labeling in a future blog post. The term Asperger's syndrome was not coined by Asperger himself, however, but was coined by British psychiatrist Lorna Wing in 1981. It was added to the DSM-IV in 1994. "The Geek Syndrome":
In 2001, Asperger's syndrome gained some notoriety due to an article in Wired magazine entitled "The Geek Syndrome," where it was described as the "milder cousin" of autism. The article describes people with Asperger's as being quirky, creative, anxious, & socially challenged. The Retirement Of Asperger's Syndrome: The term "Asperger's Syndrome" was retired in May 2013 when the American Psychiatric Association (APA) published the 5th edition of the Diagnostic & Statistical Manual of Mental Disorders (DSM-5). Now, Asperger's syndrome is no longer a diagnosis, but is known as autism spectrum disorder, level 1. This is the lowest out of the three levels of autism spectrum disorder. Even so, lots of people still use the term Asperger's. Reasons For Reclassification:
Personal Thoughts: During my autism diagnosis journey, as I began learning more & more about autism spectrum disorder, one of the things that quickly came to light was that Asperger's syndrome is no longer a term that is used. When I learned the reasoning behind this & the history behind the syndrome, I was horrified, deeply disturbed, & sick to my stomach. I was raised in a culturally & religiously-blended household, celebrating both Christian & [some] Jewish holidays, growing up. Due to having a partial Jewish background & having family members who do still practice the religion, the history behind Asperger's syndrome affects me on a deeply personal level. In fact, my parents & I don't purchase German car or appliance brands due to the Holocaust! If I were ever in a situation where someone told me that they were an Aspie, it would take some serious tongue-biting for me to not tell them that they aren't!
Identity first language is often preferred in the autistic community, but personal choice needs to be respected as well. Personally, I am someone who uses both identity first & person first language, but in this blog, I'm intentionally trying to only use person first language if I'm talking about myself & using identity first language when I'm talking about the autistic community as a whole.
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:
You've probably heard of Autism Speaks before. After all, they're the leading autism "advocacy" organization in this country. There have been weeks where I haven't been able to turn on the tv or the radio in the car without seeing or hearing an Autism Speaks advertisement. People with kind & loving hearts run marathons to raise money for, donate to, & organize fundraisers for the popular organization without knowing the truth behind them. Autistic people do not support Autism Speaks, I certainly don't support them, & you shouldn't either. Shortly after I "came out" as autistic, I received an email from a member of my family letting me know that she was going to make a contribution to the organization. Luckily, she had not yet made the donation, so I was able to point her in the direction of other autism advocacy organizations that are much more deserving of her support & money. (See below↓.) Why Not To Support Autism Speaks:
Great Autistic-Led Organizations That Deserve Our Support Include:
I have lived my entire life feeling unwanted & unaccepted. I didn't know I was autistic for almost thirty-two years of my life. Before, I didn't know why I wasn't accepted, why I felt so different from everyone around me. Now, it all makes sense to me. People are generally not accepting of people who are different from them. We need more love & acceptance in this world, not just towards autistic people, but towards everyone. If I had felt loved & accepted, my life experiences from my early childhood through adulthood would've been drastically different, in a very positive way. Autism advocates have been using the term acceptance rather than awareness for over a decade, but it took many years for the terminology to formally change. The month of April, formerly known as Autism Awareness Month, was renamed Autism Acceptance Month by the Autism Society of America in 2021. This is because we don't need you to be aware that we are here. You are already aware that we exist. We need you to accept us for who we are, our differences, our strengths, our weaknesses & all. We need you to accept that we are here. We need inclusion, acceptance, & love, not just in April, but the whole year through.
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. Autism spectrum disorder is a lifelong neurodevelopmental disability caused by differences in the wiring of the brain that often cause difficulties with social communication & interaction. It also can cause restricted or repetitive behaviors or interests. Autism is referred to as a spectrum because there is such a wide array of traits & it has a unique effect on everyone. No two autistic people will exhibit exactly the same traits or behave exactly the same way. There isn't any one single way that autism should look & for many people who know me personally, I am not their image of what autism looks like. When I "came out" as autistic to a member of my family, she asked me how being autistic affects my life. My autism affects every aspect of my life, from my social interactions to my relationships to how I communicate to my physical movements to my habits to my interests to my sensory sensitivities & more. There isn't a single day that goes by that I am not reminded in one way or another that I am autistic. I am still in disbelief that almost thirty-two years of my life went by before I knew this crucial information about myself.
Neurodivergent people are people who's brains are wired differently than what is considered typical. These people have different strengths & challenges than those of neurotypical people, or people who's brains don't have these differences. Neurodivergence embraces the positivity in these differences, bringing light to the idea that neurodiverse people have meaningful & positive insights & abilities that neurotypical people don't have. There are many types of neurodivergence, which include, but are not limited to:
Welcome & happy first day of Autism Acceptance Month! As I sit here writing my first ever blog post, I find myself reflecting on how much my life has changed over this past year. More precisely, exactly one year ago today, I had absolutely no idea I was on the autism spectrum. (!!) It feels a bit strange typing that out. The Meaning Behind Splashed With Water 💦
During my autism evaluation, my mom described washing my hair when I was a little girl as being very difficult. Ever since I can remember, it was extremely painful if even a single droplet of water were to get into my eyes, nose, or ears. Especially my eyes. Due to my fear of putting my head under the water in the shower, my dad continued washing my hair in the kitchen sink long after I should have been able to do it myself. It was embarrassing, but washing my hair myself in the shower was physically impossible. My mom tried to teach me to just close my eyes & to keep a towel outside the shower to wipe my eyes if needed. But, doing it that way was impossible due to the amount of discomfort that a single droplet of water would cause. Whenever we talked about this, it tended to turn into an argument & all the muscles in my body would tense up. That is how intense the anxiety over the simple act of washing my hair in the shower was. Eventually, I came up with the genius idea that if I covered my eyes with a washcloth when I put my head under the water, I would be able to wash my hair like any other person could. As I grew up, I didn't outgrow my extreme aversion to water & this technique is something I still use today, well into my thirties. My mom was surprised to learn that I still do this, as I was talking about it during my autism evaluation. If I didn't literally shield the shower water from my face, I wouldn't be able to wash my hair in the shower even to this day. The name Splashed With Water is poking at a sensory sensitivity caused by autism that was undiagnosed for over thirty years. This is just one example of a plethora of lifelong difficulties that began to make so much sense with an autism diagnosis. Receiving this diagnosis has given me a huge sense of relief because I now have a much deeper understanding of myself & I know why I have struggled for so long without any answers. |
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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