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.”

“What CAN be misunderstood WILL be misunderstood”

It feels good to be seen. These tweets and this piece resonate with my schooling and my career.

Autistic social motivation is deeply rooted in the desire to share knowledge and in the desire to learn, and this has big implications for the protocols that are used in autistic communication.

From an autistic perspective the extreme energy input required for any reasonably successful communication leads to the development of a number of complementary coping strategies for various situations.

I have developed a strong preference for written communication, which is a very effective strategy for avoiding the need for linguistic autistic masking.

Source: What CAN be misunderstood WILL be misunderstood – Autistic Collaboration

Related,

Bring the backchannel forward. Written communication is the great social equalizer.

Foregrounding of Complexity as the Baseline

Neurodiversity and the social model for bodyminds are about the “foregrounding of complexity as the baseline.”

I foreground all of this to underscore that there is a neurological difference, or a spectrum of neurology, that must be attended to. The movement for neurodiversity is not interested in homogenizing experience. We are different and we require different accommodations. On the other hand, my interest is not in the neural per se, which I find quickly loses its usefulness in such discussions, particularly in the ways it can be taken up in the humanities and the social sciences as an explanatory category. The neurological is only one point of departure for the question of autistic perception, and of autism more broadly.

So I would say that the concept of the neuropolitical is not particularly interesting to me. I want to support the movement for neurodiversity because I find it exciting and deeply important in its foregrounding of complexity as the baseline. And I want to think about the ways in which an engagement with neurodiversity affects how we think of the political and how we effect change. The political emphasis here is less on neurology than on the question of how normative modes of being subsumed under the unspoken category of the neurotypical organize experience, and how an engagement with neurodiversity changes the questions we ask and the actions we support.

Neurotypicality is a grounding narrative of exclusion. The neurotypical is the category to which our education systems aspire. It is the category to which our ideas of the nuclear family aspire. And, it is the category on which the concept of the citizen (and by extension participation in the nation-state and the wider global economy) is based.

In the context of education, which is the one I am most knowledgeable about, the mechanisms for upholding the neurotypical standard are everywhere in force. Every classroom that penalizes students for distributed modes of attention organizes learning according to a neurotypical norm. Every classroom that sees the moving body as the distracted body is organized according to a neurotypical norm. Every classroom that teaches predominantly for one mode of perception is organizing its learning according to a norm. Every classroom that knows in advance what knowledge looks and sounds like is working to a norm.

Intelligence, understood as the performance of a certain kind of knowledge acquisition and presentation, is built on the scaffold of neurotypicality as the unspoken norm. To speak of the normative tendencies of education is not new. My concern is with what remains largely unspoken in that conversation. Having “special needs” classrooms upholds neurotypicality, for instance, as the dominant model of existence. Drugging our children because of their attention deficit is upholding a neurotypical norm. Sending our black and indigenous children to juvenile detention centers in disproportionate numbers is upholding a neurotypical norm which takes, as neurotypicality always does, whiteness as the standard.

To engage with neurodiversity is to speak up about the extraordinary silence around neurotypicality and to acknowledge that we do not question ourselves enough as regards what kinds of bodies are welcomed and supported in education, and in social life more broadly. It is still far too rare that we discuss neurotypicality as that which frames our ways of knowing, of presenting ourselves, of being bodies in the world.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

“We’re advancing inclusive design now in Tech — which means that everyone’s individual identity and/or state will compete with each others’. Working collaboratively needs to become the norm.”

Source: John Maeda’s #DesignInTech

Previously: