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

We assembled this as a quick introduction for those interacting and working with our neurodivergent, social model family.

Hello teacher, principal, professor, coach, tutor, therapist, psychologist, nurse, doctor,

I’m autistic. You probably believe some wrong things about me. Myths, misconceptions, and misguided awareness campaignsoverwhelm and erase the actual lived experiences of autistic people. Here is what I’d like you to know about me, autism, and my needs.

Autism and Me

• I have difficulty responding to greetings and compliments. I am not rude; it’s just hard. Please afford me space and understanding, and recognize that that sociality has many ways of expression.
• Auditory processing and time perception differences mean I often need extra processing time during social and learning interactions. Be patient, and don’t get frustrated or insulted if I can’t respond.
• Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.”
• Anxiety is common among autistic people, including myself. “Autistic anxiety is a powerful presence in my life. Its intensity can be unfathomable to a neurotypical mind.”
• Sometimes I need a mind/body break. I need to be alone, I need to be in my head, and I need to stim. I stim by flapping my arms and clapping my hands while pacing. Stimming is a necessary part of sensory regulation. Stimming helps keep me below meltdown threshold. “Stimming is a natural behavior that can improve emotional regulation and prevent meltdowns in stressful situations.“
• Please proceed with what you are doing when I take a sensory break. I will observe from the edges and rejoin you when I am able.
• Autistic communities have a saying along the lines of, “I can either look like I’m paying attention, or I can actually pay attention.” Not making eye contact does not mean I’m not paying attention. “It may look like I am playing with something in my hands while my gaze is someplace far away, but I’m here with you – working to process things in my own way.” Please, never force eye contact. It is counter-productive, at best, and can cause physical pain.
• Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be patient and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm.
• Overwhelm, meltdowns, and the stress of trying to fit into neurotypical society lead to autistic burnout. “Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible. Being something that neurologically you are not is exhausting.”
• My family uses identity-first language. I am an “autistic person”, not a “person with autism”, and certainly not a person “suffering from autism”. IFL is common in and preferred by neurodiversityand social model of disability communities. Whether someone uses IFL or PFL (person-first language), respect their preference.
• 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”. It’s 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.”
• Autism is not a disease. 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.
• Presume competence. “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.”
• I am an agent, not a patient. Autistic is my identity, not a diagnosis. “We’ve built this whole infrastructure about fixing folks, about turning people into passive recipients of treatment and service, of turning people into patients. But being a patient is the most disempowered place a human being can be. We have created a system that has you submit yourself, or your child, to patient-hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.” “We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.”
• “Non-compliance is a social skill”. “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.”
• Compassion and acceptance are practical and effective magic. They remedy a lot of problems. “Compassion is not coddling.”
• “Great minds don’t always think alike. To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.” The social model, for both minds and bodies, is essential to inclusive design, collaboration, and learning. We are responsible for humanizing flow in the systems we inhabit, and we need the social model to do it.
• Inform the spaces you control with neurodiversity and the social model of disability so that they welcome and include all minds and bodies. Provide quiet spaces for high memory state zone workwhere people can escape sensory overwhelm, slip into flow states, and enjoy a maker’s schedule. Provide social spaces for collaboration and camaraderie. Create cave, campfire, and watering hole zones. Fill our learning spaces with choice and comfort, instructional tolerance, continuous connectivity, and assistive technology. Design for agency, collaboration, intrinsic motivation, and real life.
• The language and narratives of accommodation are harmful. Accommodation is not acceptance. You can’t have an inclusive-by-default culture when your mindset and framing are strictly accommodation. Accommodation encourages the harmful ableist tropes of people being “special” and “getting away with” extra “privileges” and “advantages”. Accommodation is fertile ground for zero-sum thinking, grievance culture, and the politics of resentment. We can’t build inclusion on current notions of accommodation. Inclusion requires acceptance.
• “Fair is not when everyone has the same thing, but when everyone has what they need.” Insistence on “equality” of treatment is usually ableist and exclusionary in outcome. “Equality of treatment” drives neurodivergent and disabled people out of school, out of work, and out of society. This sort of equality is anti-acceptance and anti-inclusion.
• We’re 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.”
• Fix injustice, not kids. “It essentially boils down to whether one chooses to do damage to the system or to the student.”
• Our family recommends NeuroTribes to everyone working with other humans. NeuroTribes changed the conversation about what it is to be human. It is a history of the 20th Century through the lens of the dispossessed and misunderstood. It is a trip through anguish and horror and a celebration of the minds that survived to make modernity. See also our neurodiversity and educationlibraries for other great books.
• Autistic people are the experts on autism. Listen to us.

Videos

For an introduction to autism and a taste of sensory overwhelm, check out these videos:

For a deeper dive, the entirety of the Ask an Autistic series is great:

“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. These videos offer a taste what it is like to endure the daily gauntlet of neurotypical questioning. To not respond to questions is to be called rude. To not respond will get you publicly color-coded as an orange or red and denied perks that the compliant NT kids get. To not exchange this disposable social styrofoam is to be a problem. Make it stop. Empathize with what it is like to navigate these interactions while dealing with the sensory overwhelm of raucous environments not designed for you.

Advice to Teachers and Parents of Neurodivergent Kids

Our family follows and recommends this advice:

• 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

Rules of Thumb for Inclusive Learning

The following heuristics bring together ideas from neurodiversity, the social model of disability, student-directed learning, passion-based learning, progressive education reform, social justice education reform, critical pedagogy, critical instruction design, restorative practices, hacker ethos, just culture, and distributed work. Use them when building inclusive spaces and culture.

• social model > medical model
• social model > deficit model
• spectrums > binaries
• structural ideology > deficit ideology
• agency > compliance
• compassion > coercion
• acceptance > awareness
• acceptance > accommodation
• rights based > needs based
• intrinsic motivation > extrinsic motivation
• agent > patient
• identity > diagnosis
• collaboration > curriculum
• projects > lectures
• communities > platforms

For more on these rules of thumb, see Rules of Thumb for Human Systems.

Neurodiversity, the Social Model of Disability, Diversity, and Inclusion

Our family often writes on neurodiversity, the social model of disability, and education as well as diversity and inclusion.

• 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
• Eye Contact and Neurodiversity
• Navigating Autism Acceptance Month and Autism Myths
• The Gift: LD/ADHD Reframed
• Identity First
• Neurodiversity Library
• Interaction Badges
• Hidden Disability
• Ben Foss on Dyslexia and Shame
• Compassion is not coddling
• 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”
• Inclusive Education
• Contributor Covenants and Codes of Conducts
• The Segregation of Special
• Inclusion > special
• Affinity Groups, Psychological Safety, and Inclusion
• Surviving Is Diversity Work
• GenderMag and Cognitive Walkthroughs