Experience Autistic Culture

Are you autistic, or is one of your loved ones on the spectrum? Do you feel lonely, or do you want to learn more about autism? Introducing yourself to autistic culture is a great way to educate yourself and find companionship.

Steps

Experiencing the Culture

  1. Realize that autistic people make autistic culture—not non-autistic people. If autistic people don't have a clear voice in an autism organization or event, then it is probably not a good place to find autistic people. Look for spaces that affirm, include, and empower autistic people across the board.
    • If an organization is run partially or completely by autistic people, its about page will usually say so.
    • Look at partner organizations, and whether they include or mistreat autistic people.
    • Stay away from stigmatizing groups like Boycott Autism Speaks.
  2. Read autism-friendly books written by autistic people and allies. Plenty of autistic adults have written about their experiences, as well as some compassionate loved ones and experts.
    • The Ed Wiley Autism Acceptance Lending Library has a book list that can be useful for finding books to read.[1]
  3. Go to autism-friendly hashtags online. Many autistic people use the internet to find friends and build community, so you can find a lot of autistics online if you know where to look. Certain hashtags are buzzing with activity from autistic people and their allies.
    • #AskAnAutistic is a hashtag where anyone can ask questions, and autistic people will come answer. You can also try #AskingAutistics.
    • #REDinstead is a hashtag where people take selfies or pictures involving the color red to promote autism acceptance. It was created as an alternative to #LightItUpBlue, a campaign which many autistic people find hurtful. #ToneItDownTaupe and #LightItUpGold are two other alternatives.
    • #ActuallyAutistic is a space for only autistic people to post in, without being drowned out by non-autistic people. If you aren't autistic, it's bad manners to post in this tag (but it's okay to read what you find, and often okay to retweet or reblog).
    • #DoILookAutisticYet is a tag for autistic people to post selfies, created to represent how autistic people are (and look) unique. #YouCantBeAutisticBecause is similar, in that it's a tag for autistic people to post things regarding assumptions about how they don’t “seem” autistic.
  4. Find prominent voices in the autistic community. The autistic community is full of wise, compassionate, and educated people. Some well-known autistic writers include:
    • Cynthia Kim
    • Amy Sequenzia
    • Ari Ne'eman
    • Julia Bascom
    • Emma Zurcher Long
    • Jim Sinclair
    • Lydia Brown
    • Judy Endow
  5. Participate in autism-related events. These can be rare, but if you live in more populated areas, you may be able to find positive autism events. Look for walks, charity fundraisers, pride festivals, and more.
    • Always research an event before participating in it. Some events are run by harmful organizations, and the money they raise may be hurting more than it helps.[2]
  6. Learn the common terminology. Autistic people use a unique set of terminology to discuss autism-related issues and experiences. Here are some example terms:
    • Stimming: Repetitive motions such as rocking, hand flapping, echolalia, and more. Useful for coping, and self-expression (like a smile)[3]
    • Neurodivergent: having a neurological disability such as autism, Down Syndrome, dyslexia, or bipolar disorder
    • Neurotypical/NT: having no neurological disabilities
    • Allistic: non-autistic, though not necessarily neurotypical[4]
    • Neurodiversity: the biological diversity of human brains[5]
    • Neurodiversity paradigm: the idea that autistic and other neurodivergent people are not broken, just different, and should be accepted and accommodated instead of forced to change against their will
    • Curebie: a person who believes that autism is a horrible disease that should be cured (regardless of what autistic people want)[6][7]
  7. Learn about the negative language to avoid. Some autism language is considered insulting or outdated. Sometimes, it is hard to find out what language has negative connotations, especially since autistic people are often pushed out of the conversation. Here are words and phrases that have negative connotations:
    • High/Low-Functioning:[8] It's considered rude to put people in boxes, especially since they may be skilled in some areas and significantly impaired in others.[9][10]
    • Person with autism or “Person who has autism:” Disliked by the autistic community in general because it implies that autism is separate from a person, and that it is antithetical to humanity. Autism is part of an autistic person and should be accepted and respected, just as the person is.[11] Only use this to describe someone if it is their personal preference.
    • Suffering from autism: Many autistic people are not suffering.[12] They have challenges, but so does everyone, and they consider themselves all right.
    • Autism epidemic: Autism doesn't kill people, it is not a disease, and it is not communicable.
  8. Learn about positive and negative symbols related to autism. Different symbols have developed different connotations based on how they have been used. Understanding the symbols can help you know what to put in any media you create, and spot signs of different communities.
    • The puzzle piece[13][14][15] and the color blue[16] have negative connotations.[17]
    • The neurodiversity symbol (a rainbow infinity sign), rainbows in general, red for #REDinstead, and Autisticat have positive connotations. These symbols are used by the autistic community. [18]
  9. Listen to how autistic people describe autism. Some descriptions of autism are inaccurate, because they are written by people who don't really understand autism, or they are motivated by a desire to control autistic people. Autistic people tend to paint a more factual and accepting picture.
    • Read from lots of autistic people to get the best picture. You will want to read from people who can speak and those who can't, those who can drive and those who can't, those who have active social lives and those who don't, et cetera. Understanding autism means understanding the diverse experiences that autistic people can have.
  10. Mark autism events on your calendar. Several events take place yearly, and you can join in and post about them to spread acceptance and positivity around autism.
    • Autism Acceptance Month is every April[19]
    • Autistic Pride Day is June 18[20]
    • Autistics Speaking Day is November 1[21][22]

Being an Ally

If you're non-autistic, you may be wondering how to be a good ally to autistic people and participate respectfully in Autistic culture.

  1. Realize that it is okay to join most discussions. You may want to comment to show your appreciation, or ask questions. The autistic community is an autistic place, but friendly visitors are always welcome.
    • It is okay to share articles or retweet/reblog things you found in the #actuallyautistic tag. (You may wish to mention that you aren't autistic, though, so people don't get confused.)
    • It's okay to say that an article helped you, or that you agree.
    • It's okay to ask questions. However, autistic people are not search engines, so they are not obligated to provide an answer.
    • Remember, there are plenty of allies who participate in discussions and write autism-related posts!
  2. Use a search engine for basic questions. While plenty of autistic people are happy to help, some questions ("Do autistic people have bellybuttons too?") seem a little obvious or demeaning. If you have a question, search the internet for a few minutes first, because the answer might be readily available.
  3. Be aware of general etiquette. Like all subcultures, the autistic community has some unwritten etiquette guidelines. Here some insider tips regarding things to avoid:
    • Avoid posting in the #ActuallyAutistic tag if you aren't autistic. It was developed specifically for autistic people to discuss things, without non-autistics interrupting.[23] Non-autistics can post in the #autism, #AskingAutistics, and #AskAnAutistic tags.
    • Respect all autistic people. All autistics, regardless of ability, deserve dignity and respect. Your average autistic person wants respect for everyone, including people who are more capable than they are, and people who need more help than they do.
    • Don't assume you understand someone else's struggles. Never dismiss someone as being "articulate" or "too high-functioning" to understand what "real autism" is like. You don't know what that person might go through on a daily basis, and they may face serious issues. Furthermore, even if their life is fairly good, that doesn't mean they aren't allowed to have opinions, or that they haven't listened to autistic people who have it worse.
    • Remember not to take venting personally. Sometimes, autistics may talk about bad experiences they've had, and possibly make generalizations in the heat of the moment. Just like it's rude to say "Not all men!" or "Not all white people!" saying "Not all NTs" or "Not all therapists!" only derails the conversation and makes it about your feelings.[24] If you don't do the bad thing they're talking about, then it's not about you. If you do the thing, then you can use this information to re-evaluate your behavior.
  4. Don't be afraid to help out! Allies are welcome, and autistic people can always use a hand in organizing events, finding resources, or simply educating the community. If you see autistic people organizing something, feel free to ask "Can I help?" or "May I join you?"
  5. Look for resources written for non-autistic people. Some autistic writers have articles written specifically for how you can help your loved ones and be a great ally. Never be afraid to ask for tips!

Being Understanding

Especially if you're non-autistic, you may hear things that surprise or upset you as you learn about autistic culture. Some autistic people have endured horrible abuses in life, so you may encounter upsetting discussions. Do your best to be understanding and considerate.

  1. Understand the range of bad things that autistic people can face. In addition to the regular challenges of life, autistic people are at higher risk for being mistreated. This can lead to mental health issues like PTSD or depression, trust issues, bitterness, and other effects. You may notice that some autistic people you meet are very cynical, fearful, or hesitant to trust others. Be compassionate, and keep in mind that they may have been hurt or abused in the past. Autistic people may experience things like:
    • Facing abuse: Being abused in therapies like ABA, special education, or other contexts[25][26]
    • Being put down and isolated: enduring years of bullying at school and/or work, having family members say awful things about them, discovering media that claims autistics are burdens
    • Being ignored: being told that they are "too high-functioning" receive accommodations or to talk about autism,[27][28] or on the flip side, being told they are "too low-functioning" to amount to anything.[29]
    • Gaslighting: being told that they are overreacting to their problems, or that their problems aren't real problems[30][31][32][33]
  2. Be mindful when bringing up controversial topics. All controversial subjects can ignite strong emotions and hurt feelings, especially online. It's important to remember that many autistic people have Understand PTSD (sometimes severe) from bullying or abuse.[34][35] PTSD can involve overpowering emotions and difficulty trusting others.[36][37] So they may perceive a threat even when one isn't there. Do your best to communicate your positive intent and help them feel safe around you.[38]
    • For example, perhaps you said "Not every single ABA therapist is an abusive monster." A mentally healthy autistic person might agree, understanding that the issue is nuanced. But a severely traumatized autistic person might panic, remembering the unspeakable things their therapist did to them, and start thinking that you're excusing or minimizing that type of abuse.
    • After severe trauma, some people may react like a wounded animal, panicking at the slightest perceived threat. Just like you wouldn't blame a dog from a puppy mill for being jumpy, try not to blame the trauma survivor for being reactive. Don't take it personally, and remember where they're coming from.
    • Of course, trauma doesn't justify bad behavior, or mean that you should let someone mistreat you. It's okay to set limits, like "You're allowed to be upset, but I need you to stop name-calling."
  3. Validate others' feelings, even if you don't understand right now. Be empathetic, and try to understand where they are coming from. This can keep discussions caring and productive. There are all kinds of experiences in the world that you may not be aware of. Treat them with the same compassion and understanding that you would want people to give you when you talk about your struggles.
    • For example, if someone is discussing abuse in ABA therapy, instead of saying "That doesn't happen," you could say "I didn't know that could happen" or "That sounds awful. Do you want to talk about it?"
  4. When in doubt, be kind, or just listen. Sometimes, you might hear things that sound completely different than what you understand about autism. It's okay to do a double take and be surprised by this. Remember your manners, and respond with empathy or kindness if you choose to speak. Otherwise, you can just listen quietly, or walk away if you don't want to be part of the conversation. Kindness matters, so it's better to either be kind or just be quiet.
    • You don't have to engage in a conversation if you don't want to.
    • If you are quiet and someone asks about it, you can say "I'm just listening" or "I'm not familiar with this topic, so I am learning by hearing what others have to say."
  5. Choose discussion spaces mindfully. It's okay to be thoughtful about what groups you participate on, based on your age, mental health, personal preferences, et cetera. Some discussion spaces are geared more towards newcomers and young people, and others are very political and activism-based with the expectation that you know the basics already. Look for the discussion spaces that feel right for you.
    • Keep an eye out for trigger warnings. These signal that more sensitive topics are being discussed, and that the material may not be suitable for young people or people with mental health difficulties.
    • Look at who seems to be participating. Some communities are created with autistic people specifically in mind, and some are meant for autistic people and loved ones.
    • Notice the amount of unfamiliar language, and whether it's explained. If you see a lot unfamiliar words that aren't explained, you can assume the community is probably oriented towards people who have more experience in the Autistic community.
  6. Remember that autistic people are people too. If you treat them with compassion and respect, presuming competence and listening to them, they are likely to respond well to you. If you are kind, it's hard to go wrong.

Related Articles

References

  1. https://neurodiversitylibrary.org/book-list/
  2. Joint Letter to the Sponsors, Donors, and Supporters of Autism Speaks
  3. Stimming 101: Or How I Learned to Stop Worrying and Love the Stim
  4. [1]
  5. John Elder Robinson: What is Neurodiversity?
  6. The Guardian: "It is not a disease, it is a way of life"
  7. The New York Times: How About Not "Curing" Us, Some Autistics are Pleading
  8. Susan Etlinger: "He's So Functional"
  9. Amy Sequenzia on functioning labels
  10. Cynthia Kim: Decoding the High Functioning Label
  11. Golden Hearted Rose speaks strongly in favor of identity-first language
  12. Jim Sinclair: Don't Mourn For Us
  13. http://journals.sagepub.com/doi/abs/10.1177/1362361317727125
  14. https://learnfromautistics.com/the-problem-with-the-autism-puzzle-piece/
  15. https://ollibean.com/goodnight-autism-puzzle-pieces/
  16. https://the-orbit.net/teacosy/2016/04/11/sunday-links-dont-light-blue/
  17. https://www.meriahnichols.com/light-it-up-blue-is-bad-this-is-why/
  18. https://nsadvocate.org/2018/04/30/alex-kronstein-what-is-autistic-culture/
  19. Autism Acceptance Month
  20. http://www.autismacceptancemonth.com/resources/101-3/autism-acceptance/autistic-culture/autistic-pride/autistic-pride-day/
  21. http://www.autismacceptancemonth.com/resources/101-3/autism-acceptance/neurodiversity/autistics-speaking-day/
  22. https://www.forbes.com/sites/emilywillingham/2015/10/31/autistics-speaking-day-is-november-1-so-it-is-really-time-to-listen/#6f0eb29c5c3c
  23. The Actuallyautistic Tag: Etiquette
  24. TIME Magazine: Not All Men
  25. Lydia Brown: What They Should Be Talking About
  26. Quiet Hands by Julia Bascom
  27. John Elder Robinson: "High-Functioning Aspies Don't Know What Real Autism Is" (note: contains the r-word)
  28. "Not Really Autistic" from Yes, That Too
  29. Autistic Hoya: 15 Things You Should Never Say to an Autistic
  30. Parenting Autistic Children with Love and Acceptance: Gaslighting
  31. The Gaslighting of Women and Girls on the Spectrum
  32. Are You Being Gaslighted?
  33. A Message to Women from a Man Yashar Ali looks at gaslighting in sexism
  34. https://www.emeraldinsight.com/doi/abs/10.1108/AIA-08-2017-0016
  35. https://iancommunity.org/aic/abuse-and-ptsd-among-youth-autism
  36. https://www.bbrfoundation.org/content/ptsd-brain-overreacts-cues-not-directly-linked-negative-experiences
  37. https://skywoodrecovery.com/trust-issues-after-trauma/
  38. https://theaspergian.com/2019/07/03/angry-autistics/

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