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 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 and Me

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.

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.

December Education Reading

Imagine that, instead of fawning over future-oriented “trends” or the future promise of products – be they virtual reality or “personalized learning” or “flexible seating” or what have you, that education technology actually centered itself on ethical practices – on an ethics of care. And imagine if education’s investors, philanthropists, and practitioners alike committed to addressing, say, economic inequality and racial segregation instead of simply committing to buying more tech.

Source: The Business of ‘Ed-Tech Trends’

My Writing

I chilled in December, resulting in only a couple posts with education relevance:

Older Pieces

Older pieces that I updated:

The Stories We Were Told about Education Technology (2017)

I highly recommend Audrey Watters The Stories We Were Told about Education Technology. She watches the stories ed-tech tells us and the money it spends. Each of the eleven parts is worth the time.

Previous years:

Continue reading “December Education Reading”

Autistic Anxiety and the Ableism of Accommodation

Autistic anxiety is a powerful presence in my life. Its intensity can be unfathomable to a neurotypical mind. I’m 44 years old and have trouble ordering food at a restaurant. I need hours to come down from the adrenaline poisoning of a one-minute phone call. I meltdown in crowds. Adrenal exhaustion is a near-permanent condition. This has been so for my whole life.

This, for me, is a disability. In a context where I’m required to talk and interact at length, I am disabled. If the internet and the web hadn’t come into being as I entered college and the workforce, I would likely have gone unemployed and ended up homeless. I didn’t expect to live to middle age. I expected to eventually defenestrate. “Written communication is the great social equalizer.

Disability requires context. Change the context, and eliminate the disability. The internet changed the context and made a world where I could survive. Remote work changed the context as I was burning out hard in corporate environments.

Change context with acceptance. Acceptance is practical and effective magic. Ditch the language of accommodations. Accommodation is not acceptance. You can’t have an inclusive-by-default culture when your mindset and framing are 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. You can’t build inclusion on accommodation. Inclusion requires acceptance.

I am disabled in certain contexts, but I am able and awesome in others. Like many autistic folks, my strengths are radically genuine passion, focused obsession, burning drive, pattern recognition, and hyper-empathy. In a context that harnesses these strengths instead of remediating my deficits, I can create pretty cool things with the help of a diverse team that compliments my shortcomings.

“Being autistic has always given me a strong sense of justice and fairness, and a burning drive to do the right thing and to fight for it, even when it seems like struggling against the weight of the world. This seems very related to my extreme empathy, which is also tied to my experience of being autistic.

“Knowing that injustice or violence exist anywhere is deeply painful for me, whether it directly targets me or not, and I believe that I must do anything within my capacity to work for a world where none of us have to be afraid anymore. If I were not autistic, I am certain I would not have the same drive as I do now.”

“The best things about being autistic for me are learning deeply about different subjects through hyperfocus, full immersion in sensory experiences like listening to music or watching a film, and noticing things others may not.

“The best thing for me about being autistic is the level of passion I have about my areas of interest. It drives and enables me to learn and memorize large amounts of information about a specific subject, or to become very good at a particular skill …

Source: 7 activists tell us the best thing about living with autism

In autistic circles, we have the saying, “Embrace the obsession.” That’s what I’ve been doing my entire career, embracing my obsessions in cooperation with others. Rather than remediating deficits, we need to embrace the obsession at home, in school, and at work.

Being autistic in a neurotypical company or school steeped in accommodation instead of acceptance is hard, often impossibly so. The culture is aligned against us. The culture fuels internalized ableism, anxiety, depression, and burn out. What if the tables were turned?

What if The Tables were Turned . . .

What would it be like if autistics were the founders, owners, leaders, managers, and supervisors in most businesses in the world.

And we told the non-autistics that we would train them for bottom-level entry jobs but they could work their way up, maybe.

And we told the non-autistics we would provide specialized training just for them, so they might possibly succeed.

And we told them managerial positions were hard to come by because of certain character traits the non-autistics lacked.

And we told them, even after they tried hard, and followed the guidelines and suggestions, and sat in on the seminars, and listened to everything that was different about them, that they still needed to try better and to look at their actions. We didn’t hesitate to highlight what they could improve upon during performance reviews. We needed to treat them like everyone else during evaluations. Equality.

Source: What If the Tables were Turned – Everyday Aspie

“We needed to treat them like everyone else during evaluations. Equality.”

This insistence on “equality” of treatment is ableist. It is used to drive neurodivergent and disabled people out of work and out of society. This sort of equality is anti-acceptance and thus anti-inclusion. “Fair is not when everyone has the same thing, but when everyone has what they need.

I recommend NeuroTribes to everyone working with other humans. We tech workers talk about changing the world and democratizing stuff; that book actually did it. It 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.

Help more minds survive to make modernity and a more inclusive world. Choose the language of acceptance over the language of accommodation. Years of fighting for accommodation of my chronic pain and sensory overwhelm fed my anxiety and burnout. Years of tilting at thoughtless ableism have exacted a toll. With compassion and acceptance, more minds will survive and thrive and create.