April is a difficult month to be autistic. Every day we are bombarded with “awareness” campaigns calling us broken or diseased, spreading misinformation and fear, and promoting abusive practices “for our own good.”
But I talked quite a bit about ableism in my previous post.
Autistic self-advocates are taking back the month of April with a movement called “Autism Acceptance month.” This year, I participated in autism acceptance by making one post to social media every day about the experiences of autistic people. I’ve compiled them all here. This is a particularly long one, so I’ve separated and labeled each day for easy scroll-and-skim. Enjoy!
DAY 1: What is Autism Acceptance?
According to the creators of Autism Acceptance: “During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.
Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.
DAY 2: A$ in a nutshell
Because April 1st was a Sunday, April 2nd was the international “Autism Awareness Day” complete with the campaign to “Light it up blue.” At the school where I work, many teachers and paras wore matching blue T-shirts featuring cartoons of stick-figure children happily playing together, brightly-colored puzzle pieces, and a big yellow caption reading “It’s OK to be different!”
Which would be all well and good without A$’s long history of behaving as if the exact opposite were true.
On that day, I was working with a student in a classroom for young children with complex support needs. Almost all of the students are paired with a para educator throughout the day. As I was packing up my materials, I heard a para – who happened to be wearing one of those blue shirts – shout “STOP FLAPPING YOUR HANDS” to the 4-year-old student she was working with. When I stepped around the divider to intervene, I saw the little boy fixing her with a deadpan expression and hand-flapping freely. I spoke to the para as diplomatically as I could, which perhaps wasn’t the best solution because even by the end of our conversation she still had no idea that she’d done anything wrong.
And that is the trouble with Autism Speaks in a nutshell. It’s okay to be different, except in ways that make neurotypical people feel uncomfortable, or worse: less proud of their openness. In those cases, difference is a problem that needs to be eradicated.
(Side note: I do speech therapy with this student, and we sometimes use movement stims to help him understand and retain the language that we target. It’s been really effective, and he loves coming to speech.)
DAY 3: Instead of giving money to A$, consider supporting organizations run by autistic people FOR autistic people.
In America, good examples include the Autistic Self Advocacy Network (ASAN) and the Autism Women’s Network (AWN)*. I’m not sure which organizations and/or charities are best in other countries, but feel free to comment if you know any!
*AWN has now changed their name. See Day 26.
DAY 4: Thank you, ProloQuo!
Proloquo2Go is one of the most well-known communication apps for iOS. This app can turn an iPhone or iPad into a communication device, allowing a nonspeaking person to produce language by touching buttons on a screen.
Although a myriad of Augmentative and Alternative Communication (AAC) apps exist, Proloquo2Go is one of the biggest and widely viewed as one of the best.* Autistic people, many of whom are nonspeaking, form a large portion of their consumer base.
Unlike other companies that develop adaptive tools for autistic people, Proloquo honors Autism Acceptance month instead of Autism Awareness month. Not only did they offer a sale with the specific word “Acceptance” (no puzzle pieces to be found!), but they also shared an adorable infographic about autism from the Neurodiversity Library.
Also there are more Neurodivergent Narwhals where that came from. You’re welcome.
*As a speech therapist with an interest in AAC, I find Proloquo to be comprehensive and easy to navigate, but tougher to customize on-the-fly than other AAC apps. Also very expensive. Just in case you wanted to know.
DAY 5: What it feels like to be an autistic person of color in the eyes of the police
“I live in a world that fears my skin color and doesn’t want to understand how my brain works.”
In this article on the Daily Beast, Eric Garcia, an autistic person of color, describes his experience fearing police brutality on multiple fronts.
Hearing cops say they hadn’t meant to shoot the black man, but the autistic one, hit close to home. I feel less secure than white people with autism and less secure than my friends of color who are neurotypical.
It’s not surprising, per se, but it’s frustrating and disappointing.
In a way, the police using an autistic person as an alibi makes sense. A recent white paper released by the Ruderman Family Foundation showed that up to half of all people killed by police are disabled and a medical condition or “mental illness” is used to blame victims for their own deaths. On top of that, 80 percent of all cases involving disability are labeled mental illness.
Definitely worth a read.
DAY 6: Follow Friday Part 1. Neurodivergent Rebel
Neurodivergent Rebel has a blog with text posts, video posts, and pages of great merchandise on neurodiversity and autism acceptance. Her posts contain a variety of great insights on being autistic in a neurotypical world that insists on consistently misunderstanding us. Check out her website, Facebook page, or Twitter handle. I have one of her tote bags, and I like it a lot!
DAY 7: Identity-first Language
Why “autistic people” instead of “people with autism?” I posted some links last month, but here are some more that explain the issue, and its importance, clearly and beautifully.
A quote from Identity-First Autistic on why language matters:
Because autism – and by extension autistic people, are demonised every day when our neurology is referred to as a sickness or a disease and we are called a burden and a curse…we believe that a positive change in language is the catalyst to a positive change in our thoughts and actions.
Another from ASAN breaking down the difference between PFL and IFL.
When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.
DAY 8: ‘All the Weight of Our Dreams: On Living Racialized Autism’
This is an anthology of short narratives, essays, poetry, and artwork by autistic creators of color, discussing the intersection between autism and race in our white neurotypical world. It’s not easy to find in bookstores, but I did find a local independent seller who was willing to order it, and it is worth it! It’s a very powerful read, enough that I’m needing to go through it slowly with frequent breaks, but I am really enjoying it so far.
Also, Autistic people of color are not given enough of a voice in most spaces, and Autism Acceptance needs to work on fixing that. This is a great way to start.
DAY 9: Autistic Queer Theory 101
Intersectionality in advocacy doesn’t only mean acknowledging that not all autistic people are white; it also means recognizing that not all autistic people are straight and/or cisgender. This introductory-level article on the Asperger/Autism Network (AANE) goes into it a bit more.
Because someone is diagnosed with an autism spectrum condition does not mean that person is less capable of determining their own sexual orientation or gender identity. It is more likely that family members or professionals will question their identification with these non-mainstream identities because of the autism profile and out of concern that their loved one will be part of yet another marginalized, vulnerable group.
DAY 10: On being an autistic woman
On April 9th of this year, Julia Bascom, the executive director of ASAN, made the keynote speech at a UN event on empowering autistic women and girls. Here is a transcript of her address, with some of my favorite quotes listed below.
As a society, we still see autism as a negative, sad, scary thing. But for autistic women, an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.
Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels. One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. The diagnostic criteria for autism are normed off of 4-year old white boys in upper-middle class families in the US, so anyone who doesn’t fit in that box has an uphill climb.
It’s really powerful and moving.
It shouldn’t be surprising, but the needs and struggles of autistic women and girls are very similar to the needs and struggles of women and girls broadly. We need our voices to be heard and honored. We need access to education and employment, we need access to the tools that empower everyone to be a part of the world and in charge of our own destinies. We need equal pay, not segregated employment and subminimum wages. We need real education–not 40 hours a week of behavioral modification, not compliance training, not forced normalization…My life, in many ways, looks different from that of other women and girls–but in the essentials, it is exactly the same. I deserve that same endless possibility. I deserve that same support. I deserve to be my own best champion. I deserve to be my own sun, my own moon, my own stars. And none of that depends on how well I can make eye contact or how still I can sit or how fluently I can speak. This is my birthright as a woman. Autism shapes what it might look like, but it doesn’t change a single one of my rights.
DAY 11: Allyship 101
The truth is most autistic people are brushed away and passed off when the conversation turns to autism – and the megaphone is usually handed to our loved ones and our medical professionals. We need to have a voice and a say in the autism acceptance movement, and in how we’re treated with respect and dignity.
Interested in being an ally to the autistic community? Check out this article on Everyday Feminism for a list of great ways to start.
An accountable ally wants to amplify our voices and make them heard by a larger audience. An accountable ally wants to make sure spaces are accessible to autistic people. They work to respect and center our needs and wants.
An accountable ally is constantly challenging ableism – both other people’s and their own – because they know we’re all part of a system of oppression.
DAY 12: AAC and Voice
Augmentative and Alternative Communication (AAC) is a means of communicating without speaking (see Day 6 for an example of one of the biggest developers of iPad-based AAC; for one of the most famous examples of an AAC-user, look up “Stephen Hawking”). A disproportionately large number of autistic people use AAC to communicate, whether it’s through iPads, picture boards, or something else. The U.S. Education system is not very good at teaching nonspeaking autistic students, but thanks to the work of people like DJ Savarese, it’s getting better.
AssistiveWare, the company who developed the Proloquo2Go software (See Day 6), wrote a great article on AAC and voice in honor of Autism Acceptance month.
Some AAC users do call
#AAC a voice – and you might have seen AssistiveWare using this kind of language too. But nobody can decide for somebody else what their true voice is. Some people who need AAC don’t have access to it yet. Others can only express a limited range of messages and ideas with their system. Supporting people in these situations to expand their communication is important, but only part of the solution. We also need to work on respecting people for who they are now and learning to listen to the voice they already have.
DAY 13: Follow Friday Part 2. ‘Growing Up Aspie’
DAY 14: On Meltdowns and “autism parent” pity-parties
Neurodivergent Rebel wrote a post about parents who post videos to social media of their autistic children having meltdowns.
If you have an autistic or otherwise neurodiverse child, please never EVER do this. These videos create a permanent record of a child without their consent, which could follow them through high school, higher education, and even job applications. Don’t presume your child will never have these opportunities. Don’t assume strangers won’t be able to find these videos, now or in ten years. Don’t pretend to raise “awareness” in order to gain pity for yourself.
Meltdowns are intense, harrowing experiences that make nearly everything impossible. It takes a long time to recover and even longer to rebuild trust in the people who triggered them or made them worse. Do not be those people. Do not tolerate it when your friends or relatives do this to their autistic children. Do not do this to your autistic child. It doesn’t matter what your intentions are. Just don’t.
DAY 15: Simple, everyday things you can do to support your autistic friend/family member/coworker/acquaintance/etc
Credit to Autism Ambassador
DAY 16: ‘The Visibly Invisible: Autistic People of Color’
I got it. You had to be tough to be black. There was no crying, no picky eating, none of this I can’t look you in the eye. Humor was a way of toughening yourself up, because the world was going to be tough for us, so if you don’t have a sense of humor now, you had better develop one.
Here’s an article about what it’s like to grow up and exist in our neurotypical society as an autistic woman of color.
Autism is written off not just as a condition affecting white people, but as a behavioral problem, a set of character flaws, stubbornness, and eccentricity bordering on mental illness.
TL;DR: it’s tougher than anyone who is NOT an autistic woman of color can understand.
I have told people I have autism. Too many times the reactions are either disbelief or fear.
“There is nothing wrong with you that God can’t fix,” is often the reaction. Or “I know a little something about that, but you can look me in the eye, unlike my cousin’s child.” Or worse there is fear. I feel as if other black people are saying we have failed her, she is not one of us. She is how old and acting like that? Poor girl.
DAY 17: Autism and gender diversity
Autistic people are more likely to identify as transgender or non-binary than neurotypical people are. Trans/NB people are more likely to be autistic than cisgender people are. And yet, trans or NB autistic people have to deal with a laundry list of barriers as a result of being both neuro- and gender diverse. Here’s a post with a million references on the topic.
DAY 18: Book recs!
Another great way to support autistic people while learning to see the world from a different perspective is to read books by autistic authors. Here’s a list to get you started.
I particularly recommend:
- So You Want to Be a Robot by A. Merc Rustad (Science Fiction/Fantasy, Short Stories)
- Ninefox Gambit/The Raven Stratagem by Yoon Ha Lee (SF)
- Queens of Geek by Jen Wilde (Young Adult)
- On the Edge of Gone by Connie Duyvis (YA SF)
- Emergence: Labeled Autistic by Temple Grandin (Memoir).
DAY 19: We need to talk about ABA
Hoo boy this was a long one.
Applied Behavior Analysis is a therapy technique that has been used to “treat” autism since around the 1970s, with some precursors in institutions in the 1960s. Basic tenets of the practice include interpreting behavior as a functional response to stimuli, teaching complex tasks step-by-step, and trying to “condition” preferred behaviors using systems of reward and punishment.
Ableism gets in the way of my access to the queer community and in turn makes me less proud to be part of that community. While I feel comfortable in autistic spaces, I do not always feel visible and affirmed as a queer, nonbinary person. I am always dividing myself into fractions in order to be socially accepted; I can never show up as my full queer, autistic self.
I do not exist as a fraction, and I cannot extricate my queerness from my autism. Queerness and autism are both marginalized identities that make navigating society difficult; thus, I crave companionship and solidarity in both communities. In order to do this, I need queer spaces that are more accessible to autistic people.
- Don’t bombard an autistic person (or non-autistic person with processing difficulties) with tons of information at once. That can get frustrating and overwhelming.
- Ask your question or present your information, then wait, even if the person doesn’t respond right away. Your instinct might tell you “they didn’t hear me – I should repeat myself” or “they didn’t understand – I should explain more.” This is likely not true, even counterproductive. The best thing you can do is wait.
- Don’t follow a question with another question if you haven’t gotten an answer to the first one. “How are you? How have you been? Did you do anything exciting recently? See any good movies? How about [recent movie]? Did you see that one?” As an autistic person, I can promise that if you do this to me, by the time you reach question 3 or 4, I’m no longer even trying to process what you say. I’m just planning my exit strategy.
- Prompts or pressure to make decisions quickly can be counterproductive and stressful for people who have processing delays. In extreme cases, they can cause a shutdown or meltdown. If you need a quick decision, better strategies for an autistic person are to reduce pressure and background noise while providing visual aid for choices. Informing the person of the need for an immediate decision at the time that you present the choices is not going to end well for anyone.
- Be aware that an autistic person may have trouble hearing and understanding you in noisy environments. Funny story: I used to think I had mild hearing loss, because it’s very difficult for me to understand people in spaces with lots of background noise. I was actually surprised when my hearing test fell within normal limits. Then I read about and talked to other autistic people (see Day 22), many of whom had experienced the same thing!
- Respect an autistic person’s need to protect themselves from loud noises. For some, noisy environments aren’t just annoying; they’re overwhelming. Same with sudden, loud, or high-pitched sounds. The person may need to leave the space or wear sound-suppressors due to auditory sensitivity.
Big, stressful, or emotional decisions may take days to process. Even non-autistic people sometimes need extra time to make big life decisions such as moving in with a significant other, accepting a job offer, or having children. For a person with processing difficulties, this may apply to any decision that carries weight.
DAY 25: CDC report on the prevalence of autism
The Centers for Disease Control recently released a report on the prevalence of autism in children in certain areas of the U.S. According to this report, 1 in 59 eight-year-old children in these communities has a diagnosis of autism (roughly 1.7%). This is an increase from reports conducted in previous years.
In The Autistic Self-Advocacy Network released a statement that addressed some limitations with the CDC’s methodology (examples: small sample size, limiting the survey to children) and positive changes in the data (for example: more girls and children of color are being identified than before).
Among the autistic community, people are mainly relieved that people who were not being diagnosed before are now having access to necessary supports at a younger age, attributing this increase to a better understanding of autism.
In other spaces, media outlets and certain organizations are using this information to promote fear of autism, mostly for the purpose of increased publicity. I’m not linking to examples here. They’re easy enough to find if you want to see them.
DAY 26: Autistic Women & Non-Binary Nework
The Autism Women’s Network (See Day 3) is officially changing its name to Autistic Women & Non-Binary Network. It’s always great to see advocacy organizations taking steps toward intersectionality and inclusion. Also, I admit, I’m kind of enjoying the trend where organizations that originally established themselves as “for women” redefine themselves as “for everyone except cis men.”
DAY 27: Follow Friday part 4. Ada Hoffmann.
Ada Hoffman is an autistic writer, poet, blogger, and book-reviewer who has a lot of fantastic things to say about the portrayal of autism in fiction. Her book recommendations have been extremely helpful to me, and I’m currently on the lookout for HER book, Monsters in My Mind. (No luck so far.) She’s also the one who wrote that mind-blowingly good article about emotional labor and autism. Check out her website and/or her Twitter account.
- Abed Nadir from Community (TV show). He’s far and away my favorite of the bunch. Everyone else is listed in a sort of random order.
- Denise from On the Edge of Gone by Connie Duyvis (book)
- Dr. Julian Bashir from Star Trek: Deep Space Nine (TV show)
- Lunella Lafayette from Moon Girl and Devil Dinosaur (comics)
- Tesla from “How to Become a Robot in 12 Easy Steps” (short story)
- Lisbeth Salander from The Millennium Trilogy by Stieg Larsson (books)
- Alternate Astrid from Fringe (TV show)
- Keith from Voltron: Legendary Defender (cartoon)
- Maurice Moss from The IT Crowd (TV show)
- Carlos the Scientist from “Welcome to Night Vale” (podcast)
DAY 29: Special Interests
In my favorite writing class in college, we spent a day talking about obsessions, what they were and how they could be an asset to writing. College was really the first time I had the opportunity to see special interests as a source of strength and pride rather than shame. Now as a therapist, I use them with my students all the time, as motivators or topics or teaching tools. Special interests are strengths and we should play to them. Here’s a whole article on special interests and autism.
DAY 30: For more information…
I’ve been throwing a lot of articles and information into the social media abyss this past month. I know that at least a few people found it interesting, and some learned a thing or two. I hope I’ve made a positive difference. Because there are still people out there who are afraid of people like me, who pity our families for “putting up” with us, call on abusive practices to force us to change who we are, and celebrate the prospect of an autism “cure.” And probably worse.
I’m leaving this one last article for the rest of you. It’s a page of links to MORE pages of links with information about autism, advocacy, and disability (even more pages of links can be found under “resources” on the red menu bar). I hope you enjoy it, or at least find it useful in some way.
Happy Autism Acceptance month, everyone.