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, coworker,
I’m autistic. You probably believe some wrong things about me. Myths, misconceptions, and misguided awareness campaigns overwhelm 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, Society, and Me
- Press Play for Perspective
- Advice to Teachers and Parents of Neurodivergent Kids
- Rules of Thumb for Inclusive Learning
- Neurodiversity and the Social Model
Autism, Society, 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 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 in an intense world. “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.” “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.“
- 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.
- Embrace the obsession. Special interests are “intimately tied to the well-being of people on the spectrum“. “Special interests have a positive impact on autistic adults and are associated with higher subjective well-being and satisfaction across specific life domains including social contact and leisure.“
- 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 present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm. “But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.“
- 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 self-advocacy movements and preferred by neurodiversity and social model of disability communities. Whether someone uses IFL or PFL (person-first language), respect their preference. “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.“
- 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 itself 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. Autistic is an identity and a culture. It is a valuable and natural part of human diversity.
- We are not puzzle pieces. “Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing.”
- Autism Speaks does not speak for us.
- 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.”
- “Functioning labels are useless for the autistic person.” They are harmful constructs. “Function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.” “Children grow up. Autistic children are children. The development curve might have more turns, but it tends towards the same end point. Some parents use functioning labels as a way to show how many challenges one autistic has compared to another. The more challenges there are, the lower the grade is. These parents are missing the point. When we experience hard moments, it feels bad no matter how you grade us. Everything can simply stop “functioning” even if we are said to be “high-functioning”.” ‘Aside from the fact that these labels are arbitrary, divisive, imprecise, and inaccurate, they just don’t make sense. As someone (not me) brilliantly stated, “Low functioning means that your strengths are ignored; high functioning means that your deficits are ignored.”‘ “Is Stephen Hawking low-functioning? Is being able to tie one’s shoes the pinnacle of human achievement?” “You don’t speak for everyone = be quiet. What about low functioning people? = be quiet. You’re high functioning = be quiet.”
- 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.” “Disability’s no longer just a diagnosis; it’s a community.”
- “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.” “Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.” ‘What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.‘ “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.“
- Compassion and acceptance are practical and effective magic. They remedy a lot of problems and contribute to psychological safety. Acceptance matters. “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. ” “We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.”
- “Compassion is not coddling.” Disabled and neurodivergent people are always edge cases, and edge cases are stress cases. The logistics of disability and cognitive difference in an ableist and inaccessible world are exhausting, often impossible. Part of compassion is recognizing the structural realities of marginalized people and rejecting narratives of resentment. “No one knows best the motion of the ocean than the fish that must fight the current to swim upstream. ” “By focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best.“
- “Written communication is the great social equalizer.” Phones are very stressful. If you work with neurodivergent kids, keep in mind that their parents are likely neurodivergent. Most of the autistic parents “you encounter will not be diagnosed, and may indeed be oblivious to their own social and communication difficulties. By making your systems and processes more adapted to the needs of autistic mothers, you will be supporting not only undiagnosed mothers (and fathers) but other adults with additional needs.” “Online communication is a valid accommodation for the social disability that comes with being Autistic. We need online interaction.” “Online communication for autistics has been compared to sign language for the deaf. Online, we are able to participate as equals. Our disability is often invisible and we are treated like humans. It provides much needed human contact otherwise denied us. ” “Thin slice studies showed that people prejudge us harshly in just micro-seconds of seeing or hearing us (though we fare better than neurotypical subjects when people only see our written words).” Both kids at school and adults at work benefit from backchannels. Bring the backchannel forward. “This kind of technology supports the shy user, the user with speech issues, the user having trouble with the English Language, the user who’d rather be able to think through and even edit a statement or question before asking it.“
- 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.“
- “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 statezone work where 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. Create Cavendish space. Fill our learning spaces with choice and comfort, instructional tolerance, continuous connectivity, and assistive technology. Design for agency, collaboration, intrinsic motivation, and real life.
- Interaction badges are useful tools. Their red, yellow, green communication indicators map to my cave, campfire, and watering hole moods. The cave, campfire, watering hole and red, yellow, green reductions are a useful starting place when designing for neurological pluralism. When we design for pluralism, we design for real life, for the actuality of humanity.
- 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.
- Segregation is always wrong, and “special” segregates. “The word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special” concepts that line the path to a life of exclusion and low expectations. A child with “special needs” catches the “special bus” to receive “special assistance” in a “special school” from “special education teachers” to prepare them for a “special” future living in a “special home” and working in a “special workshop”. Does that sound “special” to you?“
- “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 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.”
- Fix injustice, not kids. “It essentially boils down to whether one chooses to do damage to the system or to the student.”
- Don’t be an Autism Warrior Parent. “Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired, and how that wiring affects their life experience. Ironically, an AWP’s choices not only interfere with their own kid’s happiness and security, but contribute to social biases that prevent autistic people of all ages from getting the supports they need. Worst of all, by publicly rejecting their own children’s autism and agency, and by tending to hog the autism spotlight, AWPs are partially responsible for the public’s tendency to sympathize with parents rather than autistic kids — which, at its most extreme, can mean excusing parents and caretakers who murder their autistic charges.” “Autism Warrior Parents are those who, for whatever reason, refuse to accept their autistic child’s actual reality and needs, and instead put their energies into absolute change or control of that child.” “AWPs have also turned the internet into an autism information minefield, which is especially frustrating given that online resources are often invaluable for families who lack access to therapists, specialists, and other key resources.” “Enmeshed in fear and loathing toward autism, they condition themselves to forget that their children are fully human, and that humans respond best to compassion.”
- 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 education libraries for other great books.
- Autistic people are the experts on autism. Listen to us.
Press Play for Perspective
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 of 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.
- Instead of intensive speech therapy – we use a wonderful mash-up of communicationincluding 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 climbrocks 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 unschooland can follow our interests, dive deep in to passions, move our bodies, and control our environment
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.
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 and the Social Model of Disability
Our family often writes on neurodiversity, the social model of disability, and education.
- 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