Ways to Be an Ally During Autism Acceptance Month

”It’s a sad indictment on our society that Autism Awareness Month (April) is the month that Autistic People feel they have no other option but to hide, just to make it through.”

Autism Acceptance/Awareness Month is a hard time for autistic people. Myths and misinformation are amplified over our voices. We are drowned out and harassed.

How can you help? Here are some ways.

Contents:

  • Avoid amplifying these myths.
  • Learn about us from us.
  • Learn about autistic burnout.
  • Don’t amplify inspiration porn.
  • Don’t support behaviorism.
  • Use and promote identify-first language.
  • Connect autistic kids with autistic adults.
  • Change your framing.
  • Know that we are dying young.

Avoid amplifying these myths.

Navigating Autism Acceptance Month and Autism Myths” covers the common myths and misconceptions. Please don’t amplify these. Seeing them dominate and drown us out on social media makes for a depressing month.

Learn about us from us.

Nothing about us, without us. That’s a golden rule for inclusion and pluralism. Learn about us directly from us, not just from parents, educators, and healthcare workers, many of who have a 1940s era conception of autism.

Here’s what our autistic, ADHD, dyslexic, dyspraxic family wants you to know about us. This collects the voices and thinking of the #ActuallyAutistic self-advocacy movement:

I’m Autistic. Here’s what I’d like you to know.

Here are some hashtags where autistic people will be sharing and educating during Acceptance Month. Learn and amplify.

Learn about autistic burnout.

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Source: An Autistic Burnout – The Autistic Advocate

My piece on autistic burnout is the one I get the most feedback on from other autistic people, including autistic students and teachers. If you learn one thing about autism for your autistic family member, student, patient, or co-worker, let it be burnout.

Don’t amplify inspiration porn.

Inspiration porn is called porn because it objectifies disabled and neurodivergent people. Our family has had to navigate well-intended inspiration porn. Here’s what it is and how to avoid it:

Inspiration Porn, Mindset Marketing, and Deficit Ideology

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Source: How the Media and Society Objectify Disabled People | Paginated Thoughts

Don’t support behaviorism.

Autistic people don’t support Autism Speaks for many reasons, but one of the foremost is their support for Applied Behavior Analysis. The #ActuallyAutistic community is very much against ABA, PBS, and behaviorism is general. ABA is autistic conversion therapy. It shares history and bad actors with gay conversion therapy, a widely and rightfully condemned practice.

“We KNOW conversion therapy has seriously dangerous mental health implications for those that have had to experience it. Experts caution those who attempt to change someone’s sexual orientation. So WHY are we allowing people to attempt to change someone’s orientated thinking?”

The spread of ABA, PBS, and behaviorist ed-tech into education is of great concern. We watch the autism industry expand through public education with alarm and despair. Drop the B from PBS. Many autistic self-advocates consider such behaviorism an existential threat, myself included. Help us push back against behaviorist ed-tech at your school.

Asperger even anticipated in the 1970s that autistic adults who “valued their freedom” would object to behaviorist training, and that has turned out to be true.

Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

Use and promote identify-first language.

Disabled, Deaf, Blind, autistic. Just say the word. The majority of those in these communities prefer identity-first language, not person-first language. Promote identity-first language, and respect language choice, be it PFL, IFL, or otherwise.

When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes – but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?

Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.

So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.

Source: The cognitive dissonance of “person-first” references to #autistic people – Happy, Healthy Autist

Connect autistic kids with autistic adults.

Autistic is a community, a culture, and an identity. Connect autistic kids with autistic adults. We can help them. We know what it’s like.

Disability’s no longer just a diagnosis; it’s a community.

“Autistic kids need access to autistic communities. They need access to autistic mentors. They need to know that the problems they go through are actually common for many of us! They need to know they are not alone. They need to know that they matter and people care about them. They need to see autistic adults out in the world being accommodated and understood and respected. They need to learn how to understand their own alexithymia and their own emotions. They need to be able to recognize themselves in others. They need to be able to breathe.”

“That study identified, unsurprisingly, that it’s parents & professionals are ones fighting to hang onto ‘special’ but here’s the thing I honestly don’t get – you are depriving the kid of their membership in a big, welcoming, fantastic, supportive community by doing so. Why?”

Change your framing.

Autism cannot be understood without the social model. Reframe.

A Change of Frame: From Deficit Ideology to Structural Ideology

Autism is a genetically-based human neurological variant that can not be understood without the social model of disability.

Source: A communal definition of autism | Autistic Collaboration

Know that we are dying young.

CW: mentions of abuse, PTSD, therapy, behaviorism, suicide

Feel our urgency. We are dying young. We’re dying of PTSD induced by forced neurotypicalization. Behaviorism contributes to burnout, high suicide rates, and short lifespans for autistic people. We need allies and amplification, not more behaviorism and inspiration porn.

”I’m autistic. I just turned 36 — the average age when people like me die.”

The abuse of autistic children is so expected, so normalised, so glorified that many symptoms of trauma and ptsd are starting to be seen as autistic traits.

“#ActuallyAutistic people would do ANYTHING to stop young children going through some of the things they have. The pain. The trauma. The distress. The lack of compassion. The lack of understanding. Listen to us when we tell you the pain ABA therapy causes.”

“Pretty much everything an autistic child does, says, doesn’t do or doesn’t say is pathologised and made into a way to invent a ‘therapy’ for it. It’s actually hell to experience. We should stop doing this and start learning about autism. Thank you for listening.”

When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.”

Person-first Language and Sarcastic Teachers and Behaviorists

I hear administrators, and behavioral professionals mandate person first language but freely mock students in front of peers and teachers.

I am sick of it. Words matter.

This is how a lot of teachers in both general education and special education classrooms “communicate” with their students. Snide remarks abound. Direct answers are not provided to direct questions. Sarcasm from teachers is rampant, but the same behavior is not tolerated from students.

Sarcasm is never okay. When we are sarcastic with students it fits both the CDC definitions for relational and verbal bullying.

We are harming the child in front of their peers and we are intentionally denigrating them.

What is sad is that even the when teachers said no to using sarcasm, they managed to miss the point entirely. They avoid it because they may get in trouble or because famous education researchers like Robert Marzano are emphatic in his appeal to why sarcasm is never appropriate. It strikes me as puzzling that so many people defend using sarcasm in their day to day life as a form of humor, but then immediately turn and say it is never appropriate for a students to be sarcastic back to the teacher. It is a behavior that is a non-negotiable from students.

Source: Students Do Not Deserve Your Sarcasm – Why Haven’t They Done That Yet?

Person-first language is problematic:

“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.

Only when people get to choose their own labels will we get anywhere toward building an equitable culture.

If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue.

Source: Using “Correct Language” And “People First” by Ira David Socol – Bowllan’s Blog

I’m autistic, not a person with autism. Autistic is my identity.

I’m a disabled person, not a person with disabilities. Disabled is my identity.

Identity first language is common among social model self-advocates. When hanging out in social model, neurodiversity, and self-advocacy communities, identity first is a better default than person first. Every autistic and disabled person I know uses identity first language. The words autistic and disabled connect us with an identity and a community. They help us advocate for ourselves.

Disability’s no longer just a diagnosis; it’s a community.

There’s a language gap between self-advocates and the institutions that claim to represent us. There’s a gap between parents and their #ActuallyAutistic and disabledkids. There’s a generational gap in the disability movement. This is confusing for those trying to be allies. The articles below offer perspective and advice on identity first and person first language from self-advocates. At the end, I collect tweets from autistic and disabled self-advocates in a Twitter moment. Witness and respect these perspectives.

Source: Identity First – Ryan Boren

This is autistic life in the person-first cultures of education:

We navigate systems stacked against us to get access to what amounts to dog training-that dog trainers know better than to use-and a segregated “special” track through our systems that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.

The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people (managing sensory overwhelm, avoiding meltdown and burnout, dealing with ableism, connecting with online communities, developing agency and voice through self-advocacy) as they are specialized in deficit and medical models that pathologize difference and identity.

So heartbreakingly many can’t even bring themselves to use our language or educate parents about our existence. After autistic students age out of our care, we erase them again as adults.

Source: Neurodiversity in the Classroom – Ryan Boren

We hear the “abuse them now to prepare them for later abuse” line regularly at school. It is used to justify bad practices not at all in touch with the “real world”.

More than a few teachers have notified me that by being sarcastic – particularly with autistic students – they are preparing the students for sarcastic people in the “real world” and these teachers ardently refuse to “coddle” these autistic kids because they demonstrate difficulty with recognizing or learning social cues.

Source: Students Do Not Deserve Your Sarcasm – Why Haven’t They Done That Yet?

“Coddle” suggests a lot about the people saying it. It suggests they don’t have a structural understanding of our society. It suggests their framing is deficit ideology and meritocracy myths. It suggests they’re out of touch with the workplace and the future of work.

They’re not interested in designing for real life. They’re not allies.

Compassion is not coddling, and sarcasm from teachers and therapists isn’t comedy.

There’s been a lot of talk, of late, about laughter. Laughter as power. Laughter as luxury. Laughter as empathy. Laughter as beauty. Laughter as philosophy. Laughter as complicity. Laughter as division. The current political moment has been in one way a lesson in how easily jokes can be weaponized: Jokes can win elections. Jokes can insist that, despite so much evidence to the contrary, lol nothing matters. Jokes can contribute to the post-truth logic of things. They can lighten and enlighten and complicate and delight; they can also mock and hate and lie and make the world objectively worse for the people living in it-and then, when questioned, respond with the only thing a joke knows how to say, in the end: “I was only kidding.”

Source: Trump Mocks Christine Blasey Ford; The Rally Loves It – The Atlantic

“We can hear the spectacle of cruel laughter throughout the Trump era.”

Source: The Cruelty Is the Point – The Atlantic

Suddenly, even the most powerful people in society are forced to be fluent in the concerns of those with little power, if they want to hold on to the cultural relevance that thrust them into power in the first place. Being a comedian means having to say things that an audience finds funny; if an audience doesn’t find old, hackneyed, abusive jokes funny anymore, then that comedian has to do more work. And what we find is, the comedians with the most privilege resent having to keep working for a living. Wasn’t it good enough that they wrote that joke that some people found somewhat funny, some years ago? Why should they have to learn about current culture just to get paid to do comedy?

Source: The price of relevance is fluency