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.
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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:
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! 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.
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AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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