I’m an autistic parent of autistic kids. April is a tough month for us and other #ActuallyAutistic people. Stereotypes, myths, and inspiration porn are everywhere. Let’s confront some of that misinformation.
- Autism Speaks
- Support ASAN and Autism Women
- Puzzle Pieces
- Acceptance > Awareness
- Identity-First Language
- Autism Is Not a Disease
- Behaviorism and Applied Behaviour Analysis
- Empathy and Theory of Mind
- Stimming and Quiet Hands
- Inspiration Porn
- Advice to Teachers and Parents of Neurodivergent Kids
- #ActuallyAutistic Tweets
- Ask an Autistic
- More Resources
I don’t know a single autistic person who supports 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 Autism Women
“Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing,”
“If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt,” the study authors wrote. “However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.”
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.
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.
Source: 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.
A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.
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.”
Source: 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.
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.
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 Behaviour Analysis
ABA (Applied Behaviour Analysis) 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.
“Noncompliance is a social skill”. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.“
- 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.
- Mindset Marketing, Behaviorism, and Deficit Ideology
- Autistic Empathy
- The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults
Empathy and Theory of Mind
Autistic people do not lack empathy. In fact, many of us are hyper-empathic. Don’t mistake communication differences for lack of empathy.
One of the cruel ironies of autistic life is that autistic folks are likely to be hyper-empathic. Another irony is that neurotypicals and NT society are really, really bad at empathy and reciprocity. When your neurotype is the default, you have little motivation to grow critical capacity. Marginalization develops critical distance and empathic imagination.
The non-reflective embrace of “theory of mind” is a kind of “mind blindness”. Theory of mind is an empathic liability that gets in the way of understanding autistic and neurodivergent people.
And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability – a disability. Because not only are neurotypicals just as mind-blind to autistics as autistics are to neurotypicals, this self-centered belief in theory of mind makes it impossible to mutually negotiate an understanding of how perceptions might differ among individuals in order to arrive at a pragmatic representation that accounts for significant differences in the experiences of various individuals. It bars any discussion of opening up a space for autistics to participate in social communication by clarifying and mapping the ways in which their perceptions differ. Rather than recognize that the success rate of the neurotypical divining rod is based on mere statistical likelihood that the thoughts and feelings of neurotypicals will correlate, they declare it an ineffable gift, and use it to valorize their own abilities and pathologize those of autistics. A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.”
“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.
Source: 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.
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.
Advice to Teachers and Parents of Neurodivergent 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.
- 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.
- Instead of school – we unschool and can follow our interests, dive deep in to passions, move our bodies, and control our environment
No student will have mechanical limitations in access to either information or communication — whether through disability, inability at this moment, or even just discomfort. Learning is our goal, and we make it accessible.
Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.
To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.
Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.
Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.
It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.
To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.
Presuming competence is not an act of kindness.
Presuming competence is not something we do because we are a “good” person.
We do not get to pat ourselves on the back because we have presumed competence. If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.
“To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world. Presuming competence is nothing less than a Hippocratic oath for educators.”
Never assume that the ability to speak equals intelligence. There are plenty of autistic people who have trouble speaking but who have glorious creative worlds inside them seeking avenues of expression. Never assume that an autistic person who can’t speak isn’t listening closely to every word you say, or isn’t feeling the emotional impact of your words. I’ve interviewed many autistic people who said they could hear and understand everything around them while people called them “idiots” or described them as “out of it” to their faces. Ultimately, presuming competence is the ability to imagine that the person in front of you is just as human as you are, even if they seem to be very impaired. If you understand that the autistic students in your class are just as complex and nuanced and intensely emotional and hopeful as you are, you’ll do everything in your power to help them lead happier and more engaged lives.
No child within the Albemarle County Public Schools should need a label or prescription in order to access the tools of learning or environments they need. Within the constraints of other laws (in particular, copyright) we will offer alternative representations of information, multiple tools, and a variety of instructional strategies to provide access for all learners to acquire lifelong learning competencies and the knowledge and skills specified in curricular standards. We will create classroom cultures that fully embrace differentiation of instruction, student work, and assessment based upon individual learners’ needs and capabilities. We will apply contemporary learning science to create accessible entry points for all students in our learning environments; and which support students in learning how to make technology choices to overcome disabilities and inabilities, and to leverage preferences and capabilities.
Source: Seven Pathways
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…
Yes, I think you’re ableist. I think most of us are ableist (even if we are ourselves disabled), and because the social climate is ableist, it takes a lot to question ourselves. They way to be respectful is not about being perfect, but we can question our own ableism so as not to let it interfere with our children and their rights.
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?
No, not really. The hardest part is challenging yourself and dominant social assumptions. It is a long road but the great thing is that you’re already on it. You’ve started; because you’re questioning yourself.
This Twitter moment collects Autism Acceptance Month 2017 tweets made by #ActuallyAutistic people. These are the voices that should be centered during acceptance month.
We have enough “awareness”. The time is now for acceptance and inclusion.
Ask an Autistic
Some of my 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?
Also, visit the #AskingAutistics hashtag on Twitter.
- I’m Autistic. Here’s what I’d like you to know.
- Education, Neurodiversity, the Social Model of Disability, and Real Life
- Presume Competence: A Hippocratic Oath for Education
- Autistic Burnout: The Cost of Coping and Passing
- Autistic Empathy
- The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults
- Autistic Anxiety and the Ableism of Accommodation
- Neurodiversity and Unilateral Accommodationism
- Eye Contact and Neurodiversity
- Picking Floods, Picking Senses
- Navigating Autism Acceptance Month and Autism Myths
- The Gift: LD/ADHD Reframed
- Identity First
- Bring the backchannel forward. Written communication is the great social equalizer.
- Inspiration Porn, Growth Mindset, and Deficit Ideology
- Neurodiversity Library
- Interaction Badges
- Hidden Disability
- Ben Foss on Dyslexia and Shame
- Compassion is not coddling. Design for real life.
- The Many Forms of Difference
- Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity
- Bathroom Bills, Neurodiversity, and Disability
- Neurodiversity and Cognition Representation
- Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry
- Transitioning from invisible to visible disability
- Atypical and Autism Representation
- An Actually Autistic Review of “To Siri with Love”
- Designing for Inclusivity with the Social Model
- Classroom UX: Bring Your Own Comfort, Bring Your Own Device, Design Your Own Context
- The Segregation of Special