Navigating Autism Acceptance Month and Autism Myths

April is a tough month for #ActuallyAutistic people. Stereotypes, myths, and inspiration porn are everywhere. Let’s confront some of that misinformation.

Contents:

Autism Speaks

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 eugenicist hate group that diverts resources, talks over autistic people, spreads harmful “awareness”, and funds research and practices that abuse and kill us. 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.

Support ASAN and Autism Women

Instead of supporting Autism Speaks, support The Autistic Self-Advocacy Network (ASAN) and Autism Women’s Network.

Puzzle Pieces

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,”

“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.”

Source: Is It Time To Ditch The Autism Puzzle Piece?

Acceptance > Awareness

Autism Acceptance (or Appreciation) Month is preferred over Autism Awareness Month. acceptance > awareness

Hashtags

Instead of promoting Autism Speaks, Light It Up Blue, and puzzle pieces, promote these.

Identity-First Language

Like most 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.

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

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.

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.

Stimming and Quiet Hands

Stimming is a natural behavior that can improve emotional regulation and prevent meltdowns in stressful situations.” Contrary to the interventions of behaviorism, do not interfere with stimming.

“Quiet hands!”

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 know.

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.

Source: On Stimming and why “quiet hands”ing an Autistic person is wrong

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.

Source: A parent’s advice to a teacher of autistic kids

  • 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

Source: Respectfully Connected | #HowWeDo Respectful Parenting and Support

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.

Source: The Basics of Open Technology | Edutopia

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.

Source: “Presume Competence” – What Does That Mean Exactly? | Emma’s Hope Book

“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.

Source: A Q&A about autism with Steve Silberman, author of NeuroTribes

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

#ActuallyAutistic Tweets

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

I reference several Ask an Autistic videos above. I recommend the entire series. Amythest confronts many autism myths.

Some of my favorite episodes:

More Resources

 

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