Let’s do something a little different for this entry.
This is from a Tumblr called, well, “30 Days of Autism Acceptance”. They did a 30-day Tumblr challenge that I participated in for Autism Acceptance Month (April).
Day 1. Make yourself known. Tell the world your name and age. Talk about your diagnosis. Are you self or professionally diagnosed? Do you think self-diagnosis is valid? When did you realize/find out you were autistic? Post a photo of yourself if you’d like.
I’m Mara Lee, and I’m not comfortable giving my exact age.
I was self-diagnosed circa middle school and professionally diagnosed at 23.
I absolutely think self-diagnosis as autistic is valid, especially because there are so many barriers to paper diagnosis: race, socioeconomic class, disability, and hell, even gender. Autistic women are so underdiagnosed that even the World Health Organization still believes autistic men are five times as common as Autistic women. For all their training, doctors will never know our brains as well as we do. And sometimes they’re wrong! I have an Autistic friend who was misdiagnosed as ADHD! The real experts on autism are Autistic people. That means sometimes we can’t rely on doctors for diagnosis. Especially if they were taught bullshit like the “extreme male brain” theory (gag me).
I realized I was Autistic almost as soon as I found out what Asperger’s was (back when that was still in the DSM). It described me perfectly, although I pass as allistic very well because my mom devoted herself to making me not autistic and forced me to learn allistic social skills.
I’m not posting a photo because I have a cyberstalker.
Day 2. Talk about passing and/or being out. Are you out as autistic? How have people reacted? Do they treat you differently after they found out? Do you attempt to pass? If you do try to pass have you experienced autistic burnout from trying to pass?
I’m out as Autistic to almost everyone. Most people are surprised because I am hyperverbal and female, and they don’t see my stims as, well, stims. When I give the example of happy- or stress-flapping as one of my main stims, I usually get “but a lot of people do that”. (UUUUUUUGH.)
I mostly haven’t noticed people treating me differently after I disclose that I am Autistic. If they had in any way besides being openly ableist, though, I probably wouldn’t notice. I think most people don’t believe me or don’t “see me” as Autistic because I’m not a young nonverbal math genius boy who’s obsessed with trains. (This is also ableist, btw.)
I pass, much to my chagrin. I was trained from a young age to act allistic, especially with “social skills” that still make no sense to me. I don’t think I’ve ever burned out from trying to pass, but I am constantly fighting the impulse to elope when allistic social interaction is too much for me. I honestly don’t know how I have the self control to not constantly bolt from interactions at work; on Friday, I had to talk to several coworkers in a row about a work-related issue and nearly went nonverbal and came about this close to bolting three times. It was exhausting.
Day 3. Talk about relationships, both platonic and romantic. Have your relationships been affected by your being autistic? Have you found it hard to make and maintain friendships? Do you have a lot of friends or very few?
My relationships have definitely been affected by my being Autistic because pretty much all my interactions with people are affected by my being Autistic. It means I frequently don’t understand certain types of humor, take almost everything literally, and have next to no intellectual empathy. I do find it hard to make and maintain friendships because ableism is so prevalent. It’s rare that I find people I feel safe around. But I do have a few close friends who I absolutely love.
Day 4. Talk about your family and support. Who in your life has helped you? Have medical and mental health providers served your needs? Do you feel like your family is supportive of you being autistic?
My friends have been wonderful. They are always open to hearing me talk about ableism, how harmful Autism $peaks is, and what accommodations I need. I have some genuinely great friends ❤
Day 5. Talk about employment and your career. What do you do to support yourself? Are you on disability? Was it hard to get?
I work full-time, but do something unique enough that I don’t want to say lest my cyberstalker see this. I often am out of spoons before the workday ends and am sort of useless for the last few hours, but I still wouldn’t trade being Autistic for anything.
Day 6. Talk about music, art, writing, and other forms of creativity. Are you a creative person? What do you create? Do you include autistic themes in your creations? Does your creativity help you to deal with your autism?
First of all, I don’t have to “deal with [my] autism” and I do not appreciate that phrasing. But I do a lot a lot a loooooot of creative stuff.
I write constantly. I churn out fanfiction at a rate that I’m not sure is impressive or embarrassing, and many of my fics involve characters I headcanon as Autistic. I have three novels in progress, one of which is on draft four. And the main character in that one is Autistic, as is her best friend. I also have an Autistic character who starts out as a side character and then ends up saving all the “main” characters’ asses at the end of a different novel. My third novel…I’m sure somebody or (multiple somebodies) in there is/are Autistic and it hasn’t hit me yet. I don’t really get allistics, so I probably write plenty of Autistic characters without even realizing it. And very few of my characters are neurotypical. Oh, and I’m also writing a rock opera in which the main character is undiagnosed Autistic.
I have been writing lyrics since I was about 13. I have written several songs lambasting ableism. I wrote one in particular about how Autism $peaks is the devil and that’s an insult to the devil.
As for art…well…I’ll let my Redbubble speak for itself http://www.redbubble.com/people/autisticbanshee?asc=u
Day 7. Talk about community. How are you treated by your local community? Do you participate in any online communities? How have they reacted to you being autistic?
Almost nobody in any community reacts well to me being Autistic unless it’s an Autistic community. I’m not in any LGBTQIA+/DSGROI/MOGAI or feminist communities because of how ableist they tend to be. A lot of social justice communities are ableist as hell and are convinced they can’t be ableist because they’re “woke”. It disgusts and disheartens me. And gaming communities? Writing communities? Music communities? Don’t make me laugh. Academic communities? I could write an essay on ableism in academia. A long one.
This is why I don’t have many friends. Finding groups of people willing to see me as Autistic AND a human being? Not easy. People tend to pick seeing me as one or the other.
Day 8. Talk about traditional media. Have you been influenced by autism themes in the media? Have you had to correct misinformation about autistic people that others got from the media?
Autism is basically never done right. There are a few stereotypes I’ve seen:
-Impossible hell-child (an episode of House M.D. had parents of an Autistic kid be indifferent to their child not dying because he was Autistic)
-Social awkwardness presenting as raving assholery (Sheldon Cooper from The Big Bang Theory)
-Quirky savant (Rain Man)
-Mysterious innocent angel (I can’t think of an example, but trust me, it happens)
I wouldn’t say I’ve been influenced at all by autism themes in the media aside from being blisteringly angry at the terrible representation. I am constantly correcting misinformation about autistic people, some of which i’m sure comes from the stereotypes shown in the media.
And while we’re talking about autism themes in the media, fuck The Big Bang Theory. Fuck fuck fuck fuckity fuck The Big Bang Theory in the ear.
Day 9. Talk about Autism Speaks. Do you support them? What’s your opinion about their policies? And/or Talk about special interests. Do you have a special interest? What is it? Feel free to infodump.
Autism Speaks is an ableist hate group that needs to burn to the ground. They support eugenics, ABA, and shocking disabled children as an aversive. They are the worst kind of insidious, evil scum.
Day 10. Talk about a cure. What is your opinion about seeking a cure for autism? Do you want a cure? Why or why not? And/Or Talk about stimming. Do you stim? How? What are your favorite stims? Do you have different stims for when you are happy or agitated?
A “cure” = eugenics. Being Autistic is an inherent part of who Autistic people are. If we weren’t Autistic, we wouldn’t be ourselves. “Curing” us would kill who we are. Jim Sinclair said it best: “This is what we hear when you pray for a cure: that your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”
Not a happy topic, but something I feel is important. And it made grad school awkward because I knew professors who researched autism, so…yeah, being taught by someone who doesn’t want you to exist? Kind of uncomfortable. I actually put a poster about how A$ is The Worst on one of my professors’ doors when I found out he supported them. I still don’t know if he ever saw it…but how could I not do something?
Day 11. Talk about sensory issues. Do you also have sensory processing disorder? What kind of clothes do you wear? What foods do you eat? Are you sensitive to light or sounds? How do you deal with overstimulation?
I do have SPD.
Clothes alone don’t usually bother me, but seams on socks are the devil–actually, fuck socks in general–and itchy tags are also the devil. My SPD makes itself very known when it comes to food. Anything slimy or anything that smells even remotely of fish is a giant pile of not gonna happen. I also hate the texture of kidney beans and anything with a similar texture. I’m not sure what you call that kidney bean-esque texture, but it’s prime nope for me.
As for light and sounds, sudden loud sounds have been known to startle me into shutting down. Being unable to stand loud noises was probably my most obvious Autistic trait as a kid. Loud music is different, but you still won’t find me and my sensitive ears at Warped without earplugs. People noises are also The Worst. Loud cafeterias or restaurants? Oh man I am so out of there. Once in grad school, I eloped the hell out of a noisy cafeteria when the last straw was not being able to hear a pissed-off cashier over the people noises. I’m also hella sensitive to bright light. I have literally said “I can’t hear you; it’s too bright” because my senses were overwhelmed by the light. I see best in low light.
How do I deal with overstimulation? I wear my sunglasses a lot, usually carry earplugs, and if neither of those are available or helping, I get the hell out of there.
Day 12. Talk about ableism. Have you experienced discrimination? Have you been the target of hate speech or slurs? Have you been a victim of abuse or violence? What’s the rudest thing someone has said to you about autism or you being autistic?
I have experienced discrimination, mostly from academic professionals who were supposed to be helping me. I have also survived abuse aimed at making me less Autistic, which gave me CPTSD, but I’ve been in therapy for that and am handling it pretty well.
The rudest thing anyone ever said to me about being Autistic was “you’re not r*****ed, you have Asperger’s” when I tried to explain that the r-slur is a slur. I also pretty frequently get the stunned “I never would have guessed”, which is hella insulting.
Day 13. Talk about something funny. Has anything humorous or ironic ever happened to you because you were autistic?
Um. Not that I know of. You’d think my brain would be good for a hilarious misunderstanding or two, but I can’t think of anything.
Day 14. Talk about role models. Who are your role models? How have they influenced you?
Well, if you’re reading this, you already know.
Carrie. Carrie Fisher. She was my everything.
She was so open and honest about her bipolar disorder. She advocated for everyone getting the treatment that was right for them and removing the stigma around mental illness. Hell, she was even buried in a ceramic Prozac pill.
RIP, Carrie. I miss you.
Day 15. Talk about identity. How do you identify? Autistic? Asperger’s? Person with Autism? What’s your take on person/identity first language?
I am Autistic. I was diagnosed Asperger’s at 23, but that is no longer and should never have been a separate diagnosis from Classic/Kanner’s. I support identity first language because being Autistic is an inherent part of who Autistic people are, so saying “person with autism” like it’s a disease or separate from the person is inaccurate and dehumanizing.
Day 16. Talk about treatment. Have you been through any therapies? What ones did you like? Which ones didn’t you like? Do you think autistic people need therapy for their autism?
I have had a number of therapists in the double digits, but have never had therapy specifically for being Autistic. I think whether or not any individual needs therapy for any condition that affects them will depend on the individual, and that therapy for Autistic people should focus on getting accommodations and dealing with ableism, not forcing us to act allistic.
Day 17. Talk about empathy. Many people think autistics do not have empathy. What’s your experience with empathy? Are you hyper empathic or not empathic at all?
First of all, unusual empathy is very common with Autistic people. This refers to multiple kinds of empathy as well as being hyperempathic or hypoempathic. There are two main kinds of empathy: affective empathy, the ability to feel what other people are feeling, and intellectual empathy, the ability to think what other people are thinking. Some Autistic people have empathy of any kind, which is okay. Some Autistic people are hyperempathic at one or both, which is also okay. There’s this really unfortunate tendency of hyperempathic Autistic people to be all “Autistic people have empathy! we have too much empathy!” which…A+ lateral ableism, there my guy.
I have absolutely trash intellectual empathy and am hyperempathic when it comes to affective empathy. I feel what other people are feeling way too easily, and it can actually be really debilitating when I take on other people’s negative emotions to such a degree.
Day 18. Talk about functioning labels. What is your opinion about functioning labels? Where are you on the spectrum? If you don’t like functioning labels how would you describe your functioning ability?
UGH, functioning labels. They are inaccurate at best, dehumanizing at worst. I don’t like support labels either. I mean, I think they’re better than functioning labels, but I prefer to just be specific. Instead of saying “low-functioning” about a person, say what trait is debilitating to them that causes you to think “low-functioning”. Are they nonverbal? Incontinent? Do they have frequent meltdowns when they leave the house? Do they have zero interest in interacting with other people? Instead of saying “high-functioning” about, say, me, people usually mean “hyperverbal”, “having a high IQ”, or “has a job at a prestigious university”. I once had such a hell of a meltdown on public transit that someone else on the bus asked me if I lived in a halfway house. I was a graduate student living independently and caring for a pet at the time. Functioning labels need to die. They’re useless garbage.
TW: suicidal ideation
Day 19. Talk about your struggles and strengths. What things are difficult for you because you are autistic? What are the positives of being autistic? Do you have a special skill or talent?
Oh fuck me upside down, my struggles. Well, right now I’m fighting with suicidal ideation that cropped up over my CPTSD-born sensitivity, and my CPTSD is from someone trying to abuse the autism out of me, so there’s that. I’m also feeling suicidal right now because I feel completely hopeless about the state of the world in that it will never be safe for me as an Autistic person, so I might as well just remove myself from it.
Aside from that sunny thought, my executive function is shit sometimes–I especially can’t keep a living space clean for anything–and grocery shopping is sensory hell and I need Xanax to do it. I also go nonverbal under times of high stress, especially when talking on the phone. That is super inconvenient, mostly because I have been dragging ass when it comes to learning sign, and I don’t use AAC.
As far as positives, my favorite positive is stimming. I also love how much I can enjoy a special interest and how much I can enjoy repeated stimuli that allistics would get tired of. I can usually rhapsodize about how awesome being Autistic is, but right now I’m trying to talk myself out of jumping in front of my train to work tomorrow, so I’m not in the best mood.
Day 20. Talk about communication. Are you verbal? Nonverbal? Partially verbal? How do you usually communicate?
I am hyperverbal in most situations. In stressful social situations, I have trouble finding the right words, and if the stress gets bad enough, I become nonverbal. The easiest way to make me go nonverbal is to make me talk on the phone. I started learning ASL to communicate when I’m nonverbal or partially verbal, but I didn’t keep up with it. Bad me.
Day 21. Talk about comorbid conditions. Do you have any other disorders commonly related to autism? Were you misdiagnosed as something else first?
I have prosopagnosia, auditory processing disorder, and sensory processing disorder, which I’m not even sure I’d consider comorbid conditions as much as Autistic traits. (Some people consider them comorbid conditions, though.) I also have anxiety and depression, which seem to be fairly common in Autistic people. I also really wish there were more studies about PTSD in Autistic people because it seems like a ton of us get abused for being Autistic and end up with PTSD from it, not to mention we are more susceptible to trauma because we’re sensitive. I have CPTSD, which makes me particularly curious about this.
Day 22. Talk about autism parents. How do you feel about this section of the community? Do you feel as if they speak over you? Do you find the term ‘autism parent’ rude or offensive?
Autism parents, a.k.a. allistic parents of Autistic people, do not belong in the autism community. They need to shut up forever. The term “autism parent” is only offensive in that it implies that being the parent of an Autistic person gives you expertise on autism. Which it doesn’t, seeing as autism parents™ (also referred to as paaaaaaaaarents, by the way) are so frequently full of ableist shit.
Day 23. Talk about your living situation. Where do you live? Do you live alone or with other people? Are you happy with your current living arrangements?
I am not comfortable answering this.
Day 24. Talk about the stereotypes and misconceptions that neurotypicals and allistics have. What stereotypes have you heard about autism? How do you respond to people who have incorrect stereotypes about autism? What kind of things should people not say to autistic people? What’s something you wish NTs/allistics knew about autism?
I feel like allistics think of Autistic people as “screaming nightmare child” white boys, hyperverbal white boys who are obsessed with trains and excellent at math, or quiet, pure, angelic white boys. They also might think of Sheldon Cooper (as I have said before and will say again, fuck The Big Bang Theory in the ear). here are some other misconceptions I’ve heard about Autistic people:
-We can’t lie (I am an animate coffee cup)
-We have no empathy (true for some of us, and some of have low cognitive or low affective empathy, but it isn’t true that none of us have empathy)
-None of us can learn social skills (I have none naturally, but oh seven hells were they trained into me)
-Our behavior is mysterious and inexplicable (it has reasons, but allistics don’t bother to try to understand what they are)
-There are no Autistic adults/it is possible to grow out of being Autistic (dude…I’m almost 30)
-We’re all white and male (PoC and non-male people are underdiagnosed)
-Stimming is something that should be stopped (stopping stimming is abusive)
-It’s always obvious that we’re Autistic
Here’s a list of common things that are said to Autistic people that should never be said:
-”So are you high-functioning or low-functioning?” or any use of functioning labels
-”So I bet you’re great at math, huh?”
-”I never would have known!”
-”So you’re r****ded?”
-”A lot of people are like that” in response to someone explaining an Autistic trait
-Any use of ”handicapable” or “differently abled”
-”Have you been professionally diagnosed?”
-“Your poor parents”
-”You’re too sensitive”/”you’re overreacting”
-”Are you special needs?”
One thing I wish all allistic people knew is that society is set up to oppress Autistic people and that the least they could to is be accommodating and listen to us about our needs.
Day 25. Talk about meltdowns/shutdowns. Do you have them? How often? What are your triggers?
I will shut down in response to extreme stress, usually related to social situations. I melt down very, very rarely—about once a year, and I’ve already had one this year and hope that’s it—and I almost never have meltdowns that aren’t set off by the intensity of a post-traumatic flashback. (Ain’t comorbidity fun?)
Day 26. Talk about echolalia and scripting. Do you use echolalia? What about scripting?
Oh man, I thrive on scripts. If you hang out around me long enough, you will hear me say the exact same thing multiple times, sometimes in terms of entire anecdotes. The only reason my Autistic ass was good at cashiering was because I was able to rely so heavily on scripts.
I do use echolalia, mostly when I’m really happy and want to verbally stim with a phrase that I find gratifying. Usually it’s a phrase from a movie or a lyric from a song I like. Sometimes when I’m barely verbal, I use echolalia to communicate, but only under stress. My favorite echolalia for a while has been a phrase I saw on Tumblr to describe a pile of kittens: “writhing pile of cat children”. I have to roll the r’s.
Day 27. Talk about eye-contact. Do you make eye-contact? Why or why not? Does it make you uncomfortable?
Eye contact is uncomfortable verging on scary for me, but I am a champion at faking it. I try to look at eyebrows or the face as a whole.
Day 28. Talk about autism as a disability. Do you think autism is a disability or a difference? Or both? Do you feel more disabled by society than by your autism?
Being Autistic is 100% a disability, and I have never encountered anyone who believes otherwise for any reason besides internalized ableism. (Well, anyone Autistic, anyway; I’m not including allistic people in that because their opinions don’t matter.) Autism is certainly a neurodevelopmental difference, but as an Autistic person, I am disabled by the way society treats me and, yes, by the way my brain works. Society isn’t responsible for me having a meltdown because I heard a sudden loud noise.
The social model holds that disability is due only to the way society treats Disabled people, and as a person with multiple psychiatric disabilities, I VEHEMENTLY disagree. Society does not cause my brain to malfunction catastrophically. Even if there were no ableism, my brain would still malfunction catastrophically, and I would still be Disabled. This is why I favor the complex embodiment model over the social model.
Day 29. Talk about executive functioning. Do you experience executive dysfunction? How do you deal with it?
I do experience executive dysfunction, or, as abled people call it, “laziness” or “excuses”. Executive dysfunction can be best described as being a video game character whose abilities are on cooldown. You still know how to do productive things, and you may want to, but the ability is still recharging.
How do I deal with it? Not very well, to be honest. It’s really hard for me to keep a living space clean/organized, and I still haven’t figured out a good way to get that under control. A lot of ~adult responsibilities don’t happen due to my executive dysfunction; I recently cost myself about $400 because my mail-opening ability wasn’t happening. (I have managed to deal with this by always opening my mail right when I get it, because waiting until I have more EF doesn’t work. This will probably push me into a meltdown or shutdown one day, but oh well.)
Day 30. Talk with pride. Are you proud to be autistic? How do you show the world your pride?
Yes. Yes, I am. I find pride in one’s identity when it’s a marginalized identity can be pretty damn necessary. Or you’ll end up listening to society too much. I show the world my pride by making Autistic pride designs on Redbubble (mentioned earlier). And doing activities like this 30-day autism acceptance challenge! Oh, and I sang some good outsider anthems for open mic night last year. If there were any convenient open mics, I’d have done that this year.
Mentally ill activist and angry Disabled loudmouth. Neuroqueer as hell.