It’s Autism Acceptance Month, and I am autistic.
This year, I’ve started becoming much more open about the fact that I am autistic. Why? Because I’m tired of being misunderstood and misinterpreted. I’m tired of hearing autistic jokes (shockingly common), carrying an invisible burden, and pretending not to be bothered by certain things.
I know that I have no obligation to disclose this. But I want to disclose it, because it’s an important aspect of my identity. It shapes me. Intentionally hiding it and trying to fit into neurotypical society like a chameleon is something that personally taxes me. Being open is a relief.
My close friends have been wonderful about it. I also came out about it to my patrons last month (if you missed it, the post is here), who all responded with overwhelming support. I have no doubt many of my other friends will be great too, but in order to protect myself, I hope you at least skim the rest of this blog (including the “Not helpful” section) in order to avoid saying something upsetting. Please don’t be afraid to ask questions. And don’t be afraid to interact with me as usual after reading this. I will be updating this note as more things come to mind. I will not be responding to abusive comments, and if I can’t keep up with them, they will get deleted, so as to protect other autistic people reading this.
What is autism/what does it mean for me?
Autism is a neurological variation classified as a developmental disability that is often referred to as a spectrum. Characteristics tend to include:
- Different sensory experiences, including intense sensitivities and sensory cravings. I personally am very sensitive to certain smells, lights, textures, temperatures, and other environmental aspects, which makes merely uncomfortable things almost like hell for me (ex. certain classrooms at school are unbearable for me to set foot in, and I am unable to learn in those rooms). The are also certain forms of touching that are so displeasing to me that they feel caustic and painful (light stroking, for example). On the contrary, I crave extremely deep pressure all the time.
- Deeply focused thinking and passionate interests in specific subjects, sometimes called obsessions.
- Atypical movement.
- Need for consistency, routine, and order. People on the autistic spectrum may have trouble disrupting their consistent way of doing things and may take great pleasure in organizing or arranging items. I am frequently accused of inflexibility, or made fun of for liking things a certain way every single day. The truth is, I take great pleasure in having things in my predictable way. I don’t eat sweet potatoes and soup every day to punish myself. I do it because I like it; it makes me feel calm, peaceful, in order. Going out to lunch or dinner (even though that would be more fun for most people) sends me in a panic of unpredictability. If I have to make lunch plans, I need to know several days in advance so I can mentally prepare for the routine shake-up. Same goes for attending events.
- Difficulties in understanding and expressing language as used in typical communication. I relate to this a lot. Since childhood, I have been accused of not speaking when spoken to. I often just shut down, especially if the conversation gets emotional or angry. Words are the first thing to leave me, and I react instead with music exploding inside my brain, which is unfortunately difficult to communicate real-time. It usually looks like I’m just standing there completely uninvolved. It’s hard to describe.
- Difficulties in understanding and expressing typical social interaction, for example having delayed responses to social stimulus, or behaving in an “inappropriate” manner to the norms of a given social context (for example, not saying “hi” immediately after another person says “hi”). This is me to the max. My whole life, people have thought I was cold, uncaring, nonchalant, or “too cool for school,” when that couldn’t be further from the truth. I am aware of the fact that I don’t outwardly express myself in a warm or ebullient way, but I can’t really change it.
- Another great way to learn about the autistic experience is to read blogs by autistic people, search for the #actuallyautistic hashtag on social media, and watch the fantastic, short documentary Neurotypical (currently available on Amazon Prime streaming).
How you should treat me
- Likely, the same as you did before. Talk to me, text me, laugh at my jokes, laugh when I do something kind of silly, schedule things with me, invite me to your gatherings, set boundaries with me, tell me about your day, ask me questions…just be normal…
- Don’t make it a big deal if I respond to something in a “socially unacceptable” way. Don’t make me feel weird if I can’t be spontaneous, if I need to email a place in advance to check on some details, if I refuse to make a change in plans. Don’t make me feel bad if I don’t laugh at something, if I don’t get the sarcasm, if I don’t want to give you a hug, or if I ditch something early. I may not always react quickly enough, say hi back when you pass me, or remember to wave.
- Overall, a good rule of thumb is to please refrain from making assumptions about me based on behavior (or lack of certain behavior). Try not to read into things. Just move on!
- Understand that sometimes I don’t have enough spoons left to do things. If something agitating happens early in the day (that may not be a big deal to other people), it’s very possible that I’ll peter out by 3pm and be unable to communicate on your level, smile, or attend an extra event at night. One thing that uses up a lot of spoons is worrying about how others will react to my actions, wondering if I’m being socially acceptable enough, mitigating my responses, and trying too hard to fit in. This is part of the reason I’m writing this note. I’d like to have spoons left to do other things instead, like have real interactions, finish my homework, or go to a concert. If I feel I have a little more understanding, I can perhaps put less pressure on myself to put up with sensory hell or force a painful interaction.
Other helpful things:
- Ask me questions! Ask me to clarify things. Bring up old memories or stories. It’s okay to want to think about it and talk about it and attempt to put old things into context! I’ve had some pretty hilarious and wonderful “blast from the past” conversations this year.
- Overall, it’s best to just let me off easy when it comes to things I tell you I can’t handle. I am very self-conscious of appearing weird or “incapable,” so anything that reduces my shame or guilt is helpful.
- Respect my boundaries. Don’t make it weird or about you.
- I am inspired by the neuroqueer perspective and personally identify as neuroqueer. It’s an aspirational identity in many ways, but I am working on it.
- Asking “Are you sure you’re really autistic?”
- “Aw, don’t worry. You don’t act autistic at all! I couldn’t even tell!” Yikes, okay, this is meant to be a compliment but it’s SO not that. I am here essentially saying “Hi! This is me!” And what you’re saying is “It’s okay, you don’t really act like you!”
- “But you don’t act like [insert some other person you know who is autistic].” Yep…that’s because I’m not that other person you know who is autistic.
- “But you don’t [insert stereotype]!” I’m sure I don’t need to tell you why this is wrong.
- Telling me I’m blowing things out of proportion or insinuating that I’m making an excuse. That “everyone” has a little bit of what I’ve got going on.
- “Blaming” my autism on vaccines, diet, lifestyle, or anything else.
- Making any reference to curing autism, wanting to cure autism, or preventing autism. I love being autistic. It’s not just a “thing I have.” It’s literally a fundamental part of me, integral to how I operate. And I’m fucking awesome.
- Unloading your guilty insecurities about how you treated me in the past and expecting me to absolve or make you feel better. I don’t mind if you have regrets or feel the need to apologize. But please don’t make me feel the burden of patting you on the head and saying “aw it’s okay.”
- Making excuses for your behavior.
- Making me prove my disability to you in any way. Please don’t make me prove my misery at any given time. If I step out of class, decline your party, or seek a sensory comfort, just let me do my thing. Don’t push my buttons. Don’t make assumptions. Don’t go around thinking and saying “well Chrysanthe is just not a good sport” or “she probably hates us.” Trust me, if I could show up to everything, sit still, and look like a perfect angel child all the time, I freaking would. (This has been the story of my entire life, in fact, and if you’ve known me for a long time, you know how overly-concerned I am with trying my hardest, doing everything, and appearing under control. But the truth is, I am not always in control, and I am not always okay, so if I choose to duck out of something, just let me! It’s taken a long time to get to a point where I trust my needs enough to take care of them.
Other things to know:
- The signs in “girls” (or really, non-cis-boys) are often missed, which is why it’s easy for people like me to slip under the radar as children. People of color also have lower rates of diagnosis. I was diagnosed as an adult. I also have ADHD, which further complicates matters. And on top of that, as a professional performer I have adopted an extraordinary amount of coping mechanisms that also make my autism not so readily apparently. Don’t be fooled though. The signs in Autistic Females — Hidden for Too Long.
- Don’t support Autism Speaks. They are considered by many autistic people to be a hate organization. If you have posted their articles or participated in their campaigns in the past, I don’t judge you for it; after all, they are the most prominent autism organization out there, and you were undoubtedly trying to help. I point this out so you know for the future. 7 Reasons Not To Support Autism Speaks.
- Along those same lines, the puzzle piece image is the Autism Speaks logo, thus I would avoid purchasing any Autism-related accessories that feature the puzzle piece.
- “Light it Up Blue” is also an Autism Speaks thing (damn, they’re everywhere!) in honor of their World Autism Day, which is why many autistic people choose to celebrate #RedInstead for Autism Acceptance Day today instead.
- Most autistic people, myself included, prefer identity-first rather than person-first language. I like “autistic person” better than “person with autism.”
- Here are some Autism Acceptance Month Resources (collected by Kit Mead).
- The Mighty (website) has some helpful autism-related posts here.
“Are you sure? Did you get a second opinion?”
If you’re asking me this, it tells me that you are probably more uncomfortable with autism than I am. Yes, I am sure. And the thing is, I don’t have a problem with it. It’s totally cool. I’m guessing you are having a protective reaction caused by the stigma of the word “autistic,” and I understand that, as I used to feel it too. I’m here to tell you that I am autistic, I have gotten lots of opinions, and it’s like, totes cool. Moving on!
“Were you formally diagnosed?”
Yes. But lots of autistic people aren’t diagnosed, and that’s also okay, perhaps an issue for another note. It is a privilege to have access to doctors and be able to have these things formally recognized. In case you’re curious about specifics, the official diagnostic code assigned to me is F84.0 for Autism Spectrum Disorder. For what it’s worth, I’m classified as Level 3.
“Do you have Asperger Syndrome?”
Okay, a lot of people have asked this! I was not diagnosed with Asperger Syndrome, as it was already expunged from the DSM by the time I was diagnosed. Asperger’s was considered a type of autism, and the stereotype was/is usually that Asperger’s isn’t “as severe,” that it’s more “high-functioning.” Everything is now considered under the umbrella or general spectrum of Autism. According to this Atlantic article, “whether a child was labeled as having Asperger’s or diagnosed instead with autism, or some other developmental disorder, depended mostly on the clinician’s somewhat arbitrary interpretation.” By the way, someone a couple months ago told me “there’s no way you are autistic, unless maybe it’s Asperger’s.” This is offensive. Don’t say that.
“Why do you need a name for it though? Isn’t that stigmatizing?”
This is a great question that I totally understand! Not everyone likes to adopt the name for things (like queer, etc, which by the way I also like to call myself). As my diagnostic specialist says, autism and other diagnoses are cultural constructions. Autism is a diagnostic label that encapsulates a bunch of neuroanatomical patterns associated with it but that aren’t UNIQUE to autism. Owning autism as part of one’s identity provides further explanation, opens further vistas of exploration and empowerment, treatment, accommodation, and most importantly, vibrant community. It is ultimately up to me whether to embrace the label and be open about it, and I have decided to do just that. Hence the neuroqueer thing I was talking about earlier.
“But you look like you’re so normal onstage!”
First of all, I challenge you to elaborate on what you mean by normal. Then, I want to let you know that a lot of things I do are things I have carefully worked on in order to appear neurotypical. I have learned to act as “normal” as possible as a means of survival, especially professionally and socially. Believe it or not, when I look like I’m having the time of my life, I am sometimes feeling absolutely nothing inside. That said…I am a professional performer. And you know what? I’m really really good at my job!
“Are you always being inauthentic when you’re performing?”
Omg no. When I perform something that I’m passionate about and invested in, that is probably my biggest joy in life, because I am finally getting to communicate with others in a language I can actually speak. This is why I am increasingly trying to perform my original music more and more.
“Can I share this note?”
Yes, please share it with someone who may feel less alone reading it!
“How can I best support you?”
I appreciate you asking! Other than showing me compassion, the best possible way a person can help me — a queer, autistic, independent artist of color — is to join my Patreon for $1/month and get all of my music in return. Alternatively, I also have an album on iTunes and Bandcamp.
Chrysanthe Tan is a composer, violinist, and singer-songwriter of Cambodian and Greek descent. She is also queer and autistic. Her debut album of chamber music for piano, strings, and electronics is available on iTunes, Spotify, and all other online retailers. When not making music or writing about autistic perspectives, Chrysanthe is generally at home cooking vegan food, reading Star Wars fan theories, or staring at her cat, Anakin. Pronouns: she/they.