A couple of what it means to be. autistic to me columns

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ASPartOfMe
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20 Oct 2022, 11:24 am

My diagnosis lifted a lifetime of guilt and shame from my shoulders
Carrie Watts, Chair of the National Autistic Society Scotland Highland Branch

Quote:
I was 42 when I got my autism diagnosis, but that doesn’t mean I hadn’t always known I was different. Quite the contrary – I always felt frustratingly out of sync with everyone, always plagued by the riddle of why everything was so easy for others and so unbearably impossible for me (how do you all know how to make small talk? It remains a mystery to me still…). I vividly remember the moment when, as a six-year-old, already exhausted from the effort of trying to fit in and never managing to do it, I concluded the only reasonable explanation was that I was fundamentally broken. I already felt the hopelessness of my situation. Although I wasn’t technically “labelled” with a diagnosis, I certainly knew that whatever I was, it was wrong.

What would my life have been like if I’d received a childhood diagnosis? I can’t say. But I can say what it’s been like to not have it. I can clearly describe how my life was shaped by being denied this essential piece of personal information because of flawed diagnostic criteria, deeply rooted gender biases, and a mistaken belief that “academically gifted” is the same thing as “happy” or “doing well”. The path it determined was one of suicidal thoughts at the age of 13, of anxiety, depression, rock-bottom self-esteem, isolation, a certain conviction that I was incapable of having the kind of life I wanted, and always, always the voice in my head demanding to know “What is wrong with you?”.

While I’ve been lucky enough to find a few special souls who treasure me for my neurodivergence, I’ve also struggled through relationships with those who have belittled me for it. Despite exceptional academic achievement (academia is nothing if not predictable and structured!), I’ve gone most of my adulthood without fulfilling employment due to sensory, cognitive, and social pressures stemming from never quite understanding others, and never, ever understanding what I was doing wrong. I’ve had more than a few breakdowns – weeks, months, years lost to autistic burnout before I even knew what that meant.

I hope you can see the significance, then, of that eventual diagnosis at 42 – it lifted a lifetime of guilt, shame, and embarrassment from my shoulders. I could finally let go of the voice inside me that constantly asked “What is wrong with you? Why don’t you get it?”. I wasn’t broken, I wasn’t wrong. I was autistic.

After years of reframing my life through the lens of my diagnosis, I’ve decided that what being autistic means boils down to this: environment is everything. I wasn’t out of sync because I wasn’t trying hard enough, I just wasn’t in the right environment. I mean, taking a fish out of its fishbowl and telling it to work hard to be human won’t result in a walking, breathing fish, will it? It will result in a dead fish.

And so it is for autistic people – telling us to work hard to be “less autistic” will do nothing but harm us, some of us fatally. After all, the high rate of depression, self-harm, and death by suicide amongst autistic people is no coincidence.Getting the right environment isn’t easy, though. It needs big, systemic change. Meanwhile, everyone can do their part to give autistic people what they need. And what’s that? Listen to us, hear us, believe us. Make it unacceptable to exclude us, deny us accommodations, manage us out of jobs, and inflict torture upon us in pursuit of making us “neurotypical”. And acknowledge that while it is traumatising & disabling to be autistic in a non-autistic world, that does not invalidate our humanity.

Love the fish analogy


I Have Autism—TikTok Trivializes My Condition'.
Cecily is a singer-songwriter from Auckland, New Zealand. You can follow her on Instagram or TikTok at @cecilyisaloser or find her latest EP on Spotify or Amazon Music
Quote:
“I've been writing songs since I was around seven years old. I'm a pianist, but never really liked sheet music, so I would always try to do my own thing. I started performing my own original tracks when I was around ten. It's something I've always been good at, which is nice. I've never had an issue with performing; I didn't really understand that I was supposed to get nervous.

Because of my autism, I often have emotions but just don't really understand what they are. I can't label them, I just feel them. But when I am forced to sit down and write a song, I get this sense of clarity, which I think is really lucky. Music in itself is very emotional.

I was partially deaf until the age of four, when I had an operation to clear a blockage in my ear. I think because of my difficulty hearing when I was a toddler, nobody ever realized I was autistic. I was extremely shy, which is really common among girls with the condition. I think the stereotypical autistic boy is very loud, so nobody thought I was that different, they just thought: "Cecily doesn't really talk”

When I was very young, I was diagnosed with both autism and an eating disorder around the same time. I had stopped eating for various reasons. I was dealing with some issues at home and I noticed that on the television shows I watched and in the books that I read, if someone was skinny then they were perceived as more vulnerable.

At school, I was bullied a lot for my appearance and struggled to make friends. I thought: "I can't change what I look like, but I can make myself thinner. People might feel sorry for me and be nicer to me."

I started obsessing over the idea of being skinny, but doctors didn't really get why—they just said: "She'll grow out of it." Then, when I got my diagnosis, they said it would be difficult for them to help me, because their model was not made for autistic people.

I was just told this was how it was going to be. I have had many specialists in my life who I believe have seen my autism spectrum disorder (ASD) and thought: "Okay, that's it." I think eating disorders are often overlooked among autistic people.

During my younger years, I was in and out of the same facility to treat my eating disorder and would always hear the same thing. I told doctors that my issue was not having any friends and feeling like nobody liked me. Usually, they said: "Well, that's because you're autistic and you don't understand people." But that was it, there was never any help to be able to make friends. I felt like I wasn't able to talk about any of my social issues, it seemed to be: "Well that's how it is with autism."

At this point, I did not feel ASD was a good thing for me to have on my file. It seemed that nobody ever wanted to help me. Mostly, I felt the doctors were dismissive, that they assumed my brain would not understand what they were talking about, which is fundamentally not true.

I definitely spent my childhood and teenage years not telling people about my autism. I didn't want to be even more of an outcast than I already was. There are so many misconceptions about autism, I didn't know what my peers would think of me after telling them.

have a lot of issues with communication. For example, nobody ever told me that speaking to your male and female friends in the same way, may have different outcomes. This meant that sometimes I would speak to my guy friends in the same way as my girl mates, and they would think I was interested in them romantically.

I often say things instinctively, which can sometimes offend people. For example, if someone looks bad in an outfit and ask me whether they do, I would tell them the truth. That person may be insulted, but in my eyes, I am being nice. It's not in my nature at all to be manipulative or deceptive.

I take everything at face value and assume everyone else is doing the same. Although I'm not good at manipulating people, I'm probably not very easily manipulated because I just always assume everyone is telling the truth.

I've seen a lot of rhetoric on social media platforms like TikTok about sensory issues among autistic people, however that has personally never had a huge impact on me. I think for a lot of women and girls with ASD, interacting with other people is the biggest struggle. For many with the condition, you don't really understand social interaction, unless you practice by observing and learning from other people. It can be very isolating.

Everyone with autism has different behaviors, but for me, it's like the whole world has this inside joke that I don't understand. It's like everyone's part of a huge group chat, but I missed out on the beginning, now I'm just not quite sure what's going on. I can try and keep up, but at the end of the day I probably won't ever really get it.

I think masking depends on who you're with. If I'm around my best friends or my family there's not as much pressure, because they know me, but if I'm with loads of people it's harder.

My biggest fear is unmasking. To me, it feels like when you have a very ripe, lovely, apple. You know that no matter what, no matter how amazing the apple originally was, that at some point it's going to go through a chemical reaction and become rotten, thrown away and get eaten by worms. That's kind of how I feel about unmasking; like once people know I am autistic, see me having a meltdown or doing something unconventional, I'm never that person who I was originally and will become someone who is "crazy."

I was signed to a record label two years ago. Often these days aspiring musicians get recognised through social media, but for me it was all through live performances. It was just me and my keyboard and I happened to run into the right people, all by chance.

I didn't really have a choice about being open with my autism in the music industry, because I was getting a reputation as someone who was impolite. I would work with people who I think expected women to be super vague about their feedback, but of course I am very direct. Especially some of the men I was working with; I felt they did not like that. I don't think they'd experience girls in the industry saying: "This is what I want and if I don't like it, I will be open and tell you." People thought I was too blunt and aggressive and I didn't want people to think I was doing this on purpose, because I'm not.

Recently, I have noticed that videos about autism have started flooding platforms like TikTok. They seem to have been circulating online for a long time, but because I don't tend to engage with the mental health side of social media, plus I believe they actually have been targeting those who are not autistic, it took me a little while to notice them.

I have seen videos stating that things such as disliking velvet, hating big spoons or bumping into walls could be signs you have autism. While of course, sensory issues are associated with autism, it made me feel more self-conscious, because I thought: "Now, if I tell people I'm autistic, are they going to think I just bump into walls? Is that all it is now?"

I saw one video with the caption: "We all have that one friend that is low-key autistic." I felt the creator of this content was just using words without meaning. When you are diagnosed with autism, it's a very long process and doctors have this huge chunk of paperwork. I just imagined a doctor holding up this big pile of documents and saying to parents: "Your child is low-key autistic."

I feel these types of trends are harmful because they're taking these little things that autistic people do and creating a narrative that these quirks are the only thing autism is, which I believe is harmful because it is reducing those with the condition to their small behaviors and ignoring the fact that at its core, ASD is a developmental disability that affects your entire life.

Because I'm a small person, if I have an emotional reaction, people will not likely think I'm a threat. However when larger men with autism have meltdowns, it can be seen as aggression and could lead to them being physically restrained. I think it's important to acknowledge that sometimes people do get scared of those with autism, so to only associate the condition with something like not liking a certain fabric, I believe is really dangerous and absolutely takes away from bigger issues, which I don't see anybody really talking about.

Sometimes, my personality can be very extreme; my mood can switch from fine to being extremely low in seconds. For example, a few weeks ago my earphones broke as I was walking. When it happened, I had an extreme drop in mood to the point where I felt suicidal. Rationally, it's obvious I can go and buy a pair of headphones, but at that moment, it does not feel like that.

I feel this kind of thing isn't really spoken about online because that unpredictability is not palatable; to say that sometimes things can affect me to the point where it's disabling my entire existence. I understand why some autistic creators don't want to talk about it, because there's a sense of shame. So, instead of doing that, they talk about autism in a family friendly way. I think they're trying to be helpful but it makes people like me think: "Am I nuts? Is this not normal for someone with autism?"

Sometimes, I think people on social media randomly pick things to obsess over, which at the moment seems to include autism. It's easy for a lot of people to relate to videos picking out these small quirky behaviors, so they get a lot of views. But if the person running the account talked about issues like autistic people being particularly susceptible to bullying, I suspect it would not be so relatable and fun and would not get the same amount of interaction. I really want people to understand the less talked about symptoms, like the extreme anxiety, mood swings which occur really regularly.

I don't want to get caught up in the narrative that life with autism is inherently going to be difficult. I believe a lot of autistic people are told that they are difficult to love and that life will always be hard.

I have so many qualities that other people would love; I've always been creative, I can impersonate people, do accents and am great at memorizing things. It's not all bad and you have to focus on the things that come naturally to you, otherwise it's so easy to be caught up in the narrative that life with autism is inherently going to be difficult, because it absolutely does not have to be like that.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


autisticelders
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24 Oct 2022, 8:19 am

thanks for this!! !


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ASPartOfMe
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24 Oct 2022, 1:05 pm

autisticelders wrote:
thanks for this!! !

You are welcome.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman