We are autistic parents, adults, and young people. April is a tough month for us and other #ActuallyAutistic people. We are spoken over and marginalized from our own narrative. Stereotypes, myths, and inspiration exploitation are everywhere. Let’s confront some of that misinformation.
- Busting Stereotypes in Three Minutes with Libby
- Autism Speaks
- Support ASAN and AWN
- Puzzle Pieces
- Acceptance > Awareness
- Identity-First Language
- Autism Is Not a Disease
- Behaviorism and Applied Behavior Analysis
- Empathy and Theory of Mind
- Stimming and Quiet Hands
- Inspiration Exploitation
- Advice to Teachers and Parents of Neurodivergent Kids
- Ask an Autistic
- Reframe Autism
Busting Stereotypes in Three Minutes with Libby
Libby’s speech is a tight 3 minutes that challenges some of the most pernicious stereotypes about autistic people.
None of the autistic people in our community support Autism Speaks or the Light It Up Blue campaign. Many autistics consider Autism Speaks to be a hate group that diverts resources, talks over autistic people, spreads harmful “awareness”, and funds research and practices that amount to eugenics. April is a month of disinformation, and Autism Speaks is responsible for much of it.
This video explains what’s wrong with Autism Speaks.
Here are a few pieces detailing the troubled history of Autism Speaks.
- New Autism Speaks Masterpost (Updated 4/4/17) – The Caffeinated Autistic
- A Roundup of Posts Against Autism Speaks – Kirsten Schultz – Medium
- What’s Wrong With Autism Speaks? | Emma’s Hope Book
Support ASAN and AWN
Our field guide explains how to tell a good autism charity from a bad one.
Autistic people are not puzzle pieces. Instead of the puzzle piece propagated by Autism Speaks, use the neurodiversity rainbow infinity symbol.
“Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing,”Is It Time To Ditch The Autism Puzzle Piece?
Acceptance > Awareness
Autism Acceptance (or Appreciation) Month is preferred over Autism Awareness Month.
Awareness means we know what is hard for us. As we grow up autistic we are measured against the yardstick of “normal” in many ways over and over. Thus, autistic children often have a keen sense of who they are NOT. This deficit-based understanding may be necessary in the diagnostic realm, but it does little to support a healthy lifestyle. Who we ARE in this world – our abilities, strengths and interests – provide us with a satisfying life because that is the way it is with human beings. And yes, autistic people regardless how autistic they may or may not be, are ALL human beings. This means ALL autistics have intrinsic value.
Awareness focuses on the deficits – on understanding the deficits of the autism diagnosis – which leads to general assumptions by society of a substandard, less than group of people and it spirals downward from there, as we all have seen in today’s status quo autism rhetoric, stereotypes and assumptions. Awareness extends a hand the erroneous idea of a flawed group of substandard human beings. Awareness often provides the fertile soil supporting the growth of inspiration porn about our tribe.
Acceptance focuses on autistics rather than on autism. And yes, there is a difference. Autism is our diagnosis; it is about what is hard for us. Autistic is who we are as autistic human beings; being autistic is about who I am in this world, how I function and what I contribute. Acceptance lends itself to ideas of equality, the premise of different rather than lesser creatures. This can lead to an upward spiral towards embracing concepts such as neurodiversity, inclusion and universal design.
For society, when awareness is the focus – society understands the deficits and which, when unbalanced with the humanity of autistics, often result in a hopeless and burdensome feeling. I believe when autistic acceptance becomes society’s focus we will shift to looking at abilities, strengths, interests of autistic individuals, which will then allow us our place in the fabric of society – as actually equal human beings.
So, at this point in time, as a society we have mostly Autism Awareness, especially during the month of April. We also do have a tiny wee bit of Autism Acceptance, mostly from autistic people themselves and their allies. When society is focused on Autism Awareness deficits of autistic people and inspiration porn about them are highlighted. When society is focused on Autism Acceptance strengths and abilities of autistic people are highlighted.Autism Awareness and Autism Acceptance • Ollibean
Awareness focuses on deficits and made up ideas of normal. Awareness reinforces the deficit and medical models. Awareness is inspiration porn and the “ableist autism warrior parent” archetype. Awareness is the segregation of special. Awareness is more of the same, and, for many, that means more years of burning out attempting to pass as neurotypical.Acceptance > Awareness
My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.
The first Autism Acceptance Month celebrations were organized by Paula Durbin Westby in 2011, as a response to traditional “Autism Awareness” campaigns which the Autistic community found harmful and insufficient. “Autism Acceptance” as a concept has a history as long as the Autistic community itself, dating back to Jim Sinclair’s seminal classic “Don’t Mourn For Us” and perhaps most visibly popularized by Estee Klar’s “The Autism Acceptance Project.”About | Autism Acceptance Month
Instead of promoting Autism Speaks, Light It Up Blue, and puzzle pieces, read and promote these.
- #ActuallyAutistic – A tag for actually autistic people to hang out. If you’re not autistic, lurk and listen.
- #AskingAutistics – Ask questions of the #ActuallyAutistic community.
- #AmplifyingAutistics – “How about a NEW TAG? –
#AmplifyingAutistics for RT’s and BOOSTS of #ActuallyAutistic voices (just in time for #AutismAcceptanceMonth)”
- #AutisticParent – Conversations on autism are often dominated by Autism Warrior Parents who aren’t autistic and don’t really understand autism. Get a different perspective in this hashtag where autistic parents talk parenting.
- #DoILookAutisticYet – What does autistic look like? Like this. “I started a hashtag #doilookautisticyet for autistic people to share photos of themselves to prove that we are all as diverse as anyone else.“
- #AutisticMomsRise and #AutisticsRise – Autistics taking the narrative away from AWPs, Autism Speaks, and awareness campaigns.
- #REDinstead – An alternative to the Autism Speaks Light It Up Blue campaign. The choice of red is in rebuttal to the misconception that autism is predominantly male, which LIUB has propagated. “In other words, it’s an effort to swim against the tide of “charity” organizations that seek to unilaterally transform us into something more socially acceptable, at least until they’re finished spearheading successful attempts to treat, cure, and prevent autistic people.“
- #LightItUpGold/#LIUG – Another alternative to Light it Up Blue. “The Gold Infinity is for use on ANY work, event, campaign, fund raising, whatever! It is meant as a symbol of authenticity, declaring support for acceptance all year round and stating this message came from an authentic autistic voice.“
- #AutismAcceptanceMonth – Acceptance > Awareness
- #BoycottAutismSpeaks – Boycott Autism Speaks, their marketing, and their narratives.
- #AreYouAwareOfMeNow – Enough of awareness without acceptance.
- #NothingAboutUsWithoutUs – “Nothing About Us Without Us” is a phrase championed by self-advocacy movements.
Like most self-advocacy, neurodiversity, and disability communities, we prefer identity-first language, not person-first language. 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.
“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.Using “Correct Language” And “People First” by Ira David Socol — Bowllan’s Blog
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.The cognitive dissonance of “person-first” references to #autistic people – Happy, Healthy Autist
Autism Is Not a Disease
Autism is not a disease. Vaccines do not cause autism. There is no cure for autism, nor do autistic people want to be cured. Autism is an integral part of our being. Removing it would be a death of self. Autism is an identity and a culture. It is a valuable and natural part of human diversity.
Behaviorism and Applied Behavior Analysis
ABA (Applied Behavior Analysis) and other forms of behaviorism are not evidence-based. They ignore everything we know about autism. They are harmful.
We have ABA survivors at Stimpunks. ABA is abuse. It is torture. There is no excusing it. We do not condone it. Autistic people are not neurotypical. We cannot and should not be made neurotypical. Trying to pass as neurotypical comes at great cost and leads to burnout. Being forced to pass leads to PTSD. Compliance and behaviorism are harmful, especially to neurodivergent kids. Reject autistic conversion therapy.
Autistic self-advocates are very concerned about behaviorism and deficit ideology, particularly ABA. “My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self-advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.” With behaviorism, “the literal meaning of the words is irrelevant when you’re being abused. When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.” “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.“
- Why I Left ABA | Socially Anxious Advocate
- I Abused Children For A Living – Diary Of A Birdmad girl
- I Abused Children And SO DO YOU: A Response To An ABA Apologist – Diary Of A Birdmad girl
- I’m an ABA therapist, I’ve noticed a lot of the… – neurowonderful
- I’m sorry, but that’s not earning your token
- ‘Cardgate’ Scandal Uncovers Widespread Disrespect of Autistic People | NOS Magazine
- The Misbehaviour of Behaviourists
- Applied Behaviour Analysis – Personal Reflections
- Read what one autistic adult had to say the day she realised that the therapy she went through as a child was actually ABA
- My Thoughts on ABA – Autism Women’s Network
Empathy and Theory of Mind
Being autistic in our ableist societies is full of cruel ironies. One of the cruelest and most damaging is the myth of the unempathetic autistic. We are portrayed as robotic savants in TV and movies, reduced to an unfeeling trait. Whenever there’s a school shooting, out come the autism and mental illness tropes. Empathy myths marginalize and criminalize us.
One of the hallmarks of autism is sensory overwhelm. Many of us are hypersensory to the point of overload, meltdown, and burnout. The intensity of sensation is a flood. The world is perceived in high fidelity. We are hypersensitive to our environment, other people’s energy, and the emotional climate around us.
It’s that myth again that autistic people don’t have empathy, when in fact we often have so much that it’s hard to deal with. That empathy is what helps me to write characters and imagine how they’re feeling.Autism Awareness Week: Stop telling me I don’t ‘look’ autistic | Metro News
Many experience this as hyper empathy, an exhausting flood, a painful over-abundance of empathy that we must tamp down to avoid meltdown. We’re not hypo empathetic; we’re hyper empathetic to the point of distress. Some describe their empathy surges as automatic, instinctual, and uncontrollable.
I am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I’m experiencing (see point below), but I am overwhelmed by the emotional responses of people around me — which includes things I read on the internet, because I’m experiencing them as the other person does. (Not in the way of, I know how it is to be them when I’m not them or don’t have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can’t get rid of it.)Autistic Hoya: Why do I think I’m autistic . . .
You might not be able to see this flood from the outside. Autistic folks can have difficulties with verbal expression and communication, particularly in neurotypical social settings. Exposure anxiety and situational mutism make it difficult to dare expressive volume. The overwhelming empathy is corked up inside. Just because you can’t perceive it, doesn’t mean it’s not there.
The non-reflective embrace of “theory of mind” by those who deny our empathy is a kind of “mind blindness”. Theory of mind is an empathic liability that gets in the way of understanding autistic and neurodivergent people.
“Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.” We can’t truly step into another neurotype, but we can seek story and perspective and respect lived experience.
Stimming and Quiet Hands
“Stimming is a natural behavior that can improve emotional regulation and prevent meltdowns in stressful situations.” Contrary to the interventions suggested by behaviorism, do not interfere with stimming.
I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.
The literal meaning of the words is irrelevant when you’re being abused.
When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.
They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”
I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.Quiet Hands
I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.
When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.
So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.On Stimming and why “quiet hands”ing an Autistic person is wrong
We are not here for your inspiration. Don’t objectify us for your feels. “Inspiration porn is a term used to describe society’s tendency to reduce people with disabilities to objects of inspiration.” “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.”
Inspiration porn. What’s that?
It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people.Speechless on Twitter: “Not your inspiration porn, thank you very much.”
Advice to Teachers and Parents of Neurodivergent Kids
Instead of the myths, we follow and recommend this advice:
But embracing autism or accepting autistic people for who they are does not mean ignoring the legitimate challenges. Far from it. It simply means acknowledging that autistic people and all neurodivergent people deserve the same civil rights as others, which advocates like Sam Crane at ASAN have articulated. Often, they are the ones who want to include it in the larger movement for disability rights and request more accommodations. Many of them recognize that some autistic people have more impairments than others and want to find ways to help autistic people with comorbidities like epilepsy and gastrointestinal issues. Embracing autistic people and acknowledging their needs are not mutually exclusive ideas; they are complementary. For the most part, the increase in diagnoses has given autistic people something important: a community.We’re Not Broken: Changing the Autism Conversation
“Autism is a unique condition in medicine because it confers powerful disability and really extraordinary exceptionality,” he told me back in 2015. “Our duty in autism is not to cure but to relieve suffering and to maximize each person’s potential.”We’re Not Broken: Changing the Autism Conversation
Instead of intensive speech therapy – we use a wonderful mash-up of communication including AAC, pictures scribbled on notepads, songs, scripts, and lots of patience and time.
Instead of sticker charts and time outs, or behavior therapy – we give hugs, we listen, solve problems together, and understand and respect that neurodivergent children need time to develop some skills
Instead of physical therapy – we climb rocks and trees, take risks with our bodies, are carried all day if we are tired, don’t wear shoes, paint and draw, play with lego and stickers, and eat with our fingers.
Instead of being told to shush, or be still- we stim, and mummies are joyful when they watch us move in beautiful ways.Respectfully Connected | #HowWeDo Respectful Parenting and Support
A parent’s advice to a teacher of autistic kids
- Be patient. Autistic children are just as sensitive to frustration and disappointment in those around them as non-autistic children, and just like other children, if that frustration and disappointment is coming from caregivers, it’s soul-crushing.
- Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.
- Meet them at their level. Try to adapt to the issues they’re struggling with, as well as their strengths and special interests. When possible, avoid a one-size-fits all approach to curriculum and activities.
- Treat challenges as opportunities. Each issue – whether it’s related to impulse control, a learning challenge, or a problem behavior – represents an opportunity for growth and accomplishment. Moreover, when you overcome one issue, you’re building infrastructure to overcome others.
- Communicate, communicate, communicate. For many parents, school can be a black box. Send home quick notes about the day’s events. Ask to hear what’s happening at home. Establish communication with people outside the classroom, including at-home therapists, grandparents, babysitters, etc. Encourage parents to come in to observe the classroom. In short, create a continuous feedback loop so all members of the caregiver team are sharing ideas and insights, and reinforcing tactics and strategies.
- Seek inclusion. This one’s a two-way street: not only do autistic children benefit from exposure to their non-autistic peers, those peers will get an invaluable life lesson in acceptance and neurodiversity. The point is to expose our kids to the world, and to expose the world to our kids.
- Embrace the obsession. Look for ways to turn an otherwise obsessive interest into a bridge mechanism, a way to connect with your students. Rather than constantly trying to redirect, find ways to incorporate and generalize interests into classroom activities and lessons.
- Create a calm oasis. Anxiety, sensory overload and focus issues affect many kids (and adults!), but are particularly pronounced in autistic children. By looking for ways to reduce noise, visual clutter and other distracting stimuli, your kids will be less anxious and better able to focus.
- Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.
- Encourage play and creativity. Autistic children benefit from imaginative play and creative exercises just like their non-autistic peers, misconceptions aside. I shudder when I think about the schools who focus only on deficits and trying to “fix” our kids without letting them have the fun they so richly deserve. Imaginative play is a social skill, and the kids love it.
I just want to do what is best for my child. Can this notion of Neurodiversity help me do that?
Yes, absolutely! The notion of Neurodiversity can allow you to embrace your child for who they are, and it can empower you to look for respectful solutions to everyday problems. It can also help you to raise your child to feel empowered and content in their own skin.
Do you think I am ableist? I thought I was helping my child…
That is hard for me to hear. I didn’t think I was ableist and it hurts to be told I am.
That’s fair enough. However, if you want to do what is best for your child you will need to move past that in order to begin to shed this ableism from your everyday reactions and choices.
How does it feel to be autistic?
That is really complex and difficult to answer. I cannot explain that in as much depth as would give you a good knowledge of it, however there are so many autistic writers you can look to for guidance on that. If you are asking me to to describe how I experience life, as compared to how you experience life, this is a huge question.
Is there a quick way to understand all this?Respectfully Connected | Neurodiversity Paradigm Parenting FAQs
Ask an Autistic
Some of our favorite episodes:
- Ask an Autistic #1 – What is Stimming?
- Ask an Autistic #2 – What is Passing?
- Ask an Autistic #3 – What is Autistic Burnout?
- Ask an Autistic #5 – What is ABA?
- Ask an Autistic #8 – What About Functioning Labels?
- Ask an Autistic #12 – What Shouldn’t I Say to Autistic People?
- Ask an Autistic #14 – What are Some Good Therapies for Autistic Children?
- Ask an Autistic #15 – What are Autistic Meltdowns?
- Ask an Autistic #19 – What is Neurodiversity?
- Ask an Autistic #21 – What About Eye Contact?
- Ask an Autistic #23 – What is Autism?
Reframe yourself and others. This is hard and important work necessary to all other work. Change the narrative. Start reframing with our “reframer’s journey”.
The Reframer’s Journey
This post is also available in: Español (Spanish)