I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with selections from “NeuroDiversity: The Birth of an Idea by Judy Singer”.

Computers as the essential prosthetic device for autistics?

Despite a common history of what can, with the wisdom of hindsight, be termed “oppression”, the limited social, networking, and organisational skills of people with AS together with their aversion to direct human contact, had prevented them joining together to form an effective movement to address their specific issues. All this changed however with the advent of the Internet. Computers are the communications medium par excellence for autistics. A significant number of autistics claim that computers mirror the way their minds work (Grandin, with Blume, 1997). By filtering out all the sensory overwhelm caused by actual physical presence, computers free up autistics’ communicative abilities.

InLv members regularly sing the praises of the new medium that allows them to have the form of communication they desire, while protecting them from the overwhelming sensory overload and rapid processing demands of human presence. For many, email lists are their first experience of community. Jane Meyerding, a member of InLv makes clear just how much autistics owe to computer technology:

Like a lot of ACs (autistics and cousins), I find myself able to enjoy “community” for the first time through the internet. The style of communication suits me just fine because it is one-on-one, entirely under my control in terms of when and how long I engage in it, and, unlike real-life encounters, allows me enough time to figure out and formulate my responses. In real-world encounters with groups—even very small groups—of people, I am freighted with disadvantages. I am distracted by my struggle to identify who is who (not being able to recognise faces), worn out by the effort to understand what is being said (because if there is more than one conversation going on in the room, or more than one voice speaking at a time, all the words become meaningless noise to me), and stressed by a great desire to escape from a confusing flood of sensation coming at me much too fast. (Jane Meyerding – Thoughts on Finding Myself Differently Brained, 1998)

As this statement shows, for autistics, computers are the essential prosthetic device, one which turns them from withdrawn, isolated individuals, to networked social beings, the prerequisite to effective social action, and a voice in the public arena.

Autistics compare the importance to them of computers with the importance of seeing-eye dogs to the blind. Martijn Dekker, who is the ‘owner’ of the InLv email forum, and a prominent autistic activist foreshadows puts it plainly:

For reasons obvious to our HFA/AS community, I consider a computer to be an essential disability provision for a person with Asperger’s. (8 Nov 1998)

Source: NeuroDiversity: The Birth of an Idea by Judy Singer

It seems as if the Open Space principles and the Law of Two Feet have been designed specifically for autistic communication and collaboration needs. Even the way of initiating conversations in Open Space feels highly intuitive from an autistic perspective:

  1. write down and briefly explain a problem statement,
  2. listen to other problem statements, and then
  3. allow participants to self-organise around specific topics of interest

Source: What CAN be misunderstood WILL be misunderstood | The Aspergian | A Collective of Autistic Voices

Autistic social motivation is deeply rooted in the desire to share knowledge and in the desire to learn, and this has big implications for the protocols that are used in autistic communication. In contrast, the societies we grow up in and live in value abstract social status symbols more than developing a shared understanding, and this leads to the communication challenges that define our social experiences.

Source: What CAN be misunderstood WILL be misunderstood | The Aspergian | A Collective of Autistic Voices

Computers as the essential prosthetic device for autistics?

Despite a common history of what can, with the wisdom of hindsight, be termed “oppression”, the limited social, networking, and organisational skills of people with AS together with their aversion to direct human contact, had prevented them joining together to form an effective movement to address their specific issues. All this changed however with the advent of the Internet. Computers are the communications medium par excellence for autistics. A significant number of autistics claim that computers mirror the way their minds work (Grandin, with Blume, 1997). By filtering out all the sensory overwhelm caused by actual physical presence, computers free up autistics’ communicative abilities.

InLv members regularly sing the praises of the new medium that allows them to have the form of communication they desire, while protecting them from the overwhelming sensory overload and rapid processing demands of human presence. For many, email lists are their first experience of community. Jane Meyerding, a member of InLv makes clear just how much autistics owe to computer technology:

Like a lot of ACs (autistics and cousins), I find myself able to enjoy “community” for the first time through the internet. The style of communication suits me just fine because it is one-on-one, entirely under my control in terms of when and how long I engage in it, and, unlike real-life encounters, allows me enough time to figure out and formulate my responses. In real-world encounters with groups—even very small groups—of people, I am freighted with disadvantages. I am distracted by my struggle to identify who is who (not being able to recognise faces), worn out by the effort to understand what is being said (because if there is more than one conversation going on in the room, or more than one voice speaking at a time, all the words become meaningless noise to me), and stressed by a great desire to escape from a confusing flood of sensation coming at me much too fast. (Jane Meyerding – Thoughts on Finding Myself Differently Brained, 1998)

As this statement shows, for autistics, computers are the essential prosthetic device, one which turns them from withdrawn, isolated individuals, to networked social beings, the prerequisite to effective social action, and a voice in the public arena.

Autistics compare the importance to them of computers with the importance of seeing-eye dogs to the blind. Martijn Dekker, who is the ‘owner’ of the InLv email forum, and a prominent autistic activist foreshadows puts it plainly:

For reasons obvious to our HFA/AS community, I consider a computer to be an essential disability provision for a person with Asperger’s. (8 Nov 1998)

Source: NeuroDiversity: The Birth of an Idea by Judy Singer

See also: Bring the backchannel forward. Written communication is the great social equalizer.

To be successful at a company like Automattic, you have to be able to communicate effectively via text

Source: Welcome to the Chaos – Distributed.blog

Distributed work, the future of work for many, runs on written communication. Fortunately for me, written communication is a great social equalizer, enabling me to participate and contribute.

See also,

When I finally turned to social media, I found that the recommendations I’d been given for how to care for Edmund were incomplete and ignored the crucial perspective of disabled adults. On Twitter, I connected with disabled people for the first time. I devoured their tweetstorms, blog posts, and articles. I started to learn about the experience of disability. Stella Young’s TED Talk on disability, with all her wry humor, made me rethink how disabled people are both sentimentalized and denied basic accommodations. By reading their perspectives, I saw Edmund in a whole new light.

I heard disabled adults argue that disabled kids need to learn agency and independence rather than compliance. They want to ensure that disabled people are accommodated and receive what they need to live their lives. Many disabled people don’t want to be cured; disability is frequently essential to their identities. This is even reflected in how most disabled people define themselves: They often prefer to be called “disabled people” because their disability is vital to their sense of self, whereas parents often say “people with disabilities” because they want to stress that their child’s disability doesn’t define them.

This may seem like semantics, but it reflects the tension between these two groups. Some disabled people resent that parents, not disabled people, are often the spokespeople for disability issues, because their priorities can be so different. Upon facing a diagnosis for a child that entails disability, parents often want a cure. Failing that, they frequently want their child’s disability to at least be less apparent to the outside world. I certainly empathized with this impulse. As parents, we want the world to readily accept our kids.

But when I read an autistic person describe firsthand how painful loud noises are, I began to understand how urgent it is that I protect Edmund from similar pain. I shouldn’t try to “manage” this behavior by coaching him to tolerate the pain, as some other parents and health care professionals recommended; I should instead remove him from a place with noises that hurt him. When I read some disabled people say that they did not want to be cured, that their disability was a part of who they were, I thought that perhaps Edmund felt that way too and was unable to communicate it. Julia Bascom, executive director of the Autistic Self Advocacy Network, writes movingly of the fear and pain of being forced as a child to stop flapping her hands: “Not being able to talk is not the same as not having anything to say.”

Source: Adults with disabilities are the best resource for parents of children with disabilities.

I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm”.

  1. Learn from autistic people
  2. Tell your child they are autistic
  3. Say NO to all things stressful & harmful
  4. Slow down your life
  5. Support & accommodate sensory needs
  6. Value your child’s interests
  7. Respect stimming
  8. Honour & support all communication
  9. Minimise therapy, increase accommodations & supports
  10. Explore your own neurocognitive differences

Source: Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm

Sometimes it takes another person with your specific disability label, not another neurotypical teacher or peer, to help the world understand your experience. One of the first books I read about autism was Donna Williams’s memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic (Jessica Kingsley Publishers, 1998). One of her observations has always struck me as particularly apt: “Communication via objects was safe,” Williams says. For me, computers are objects that can be a bridge to interpersonal connection and growth. Those are things we all want, regardless of our differences.

Source: Valuing differences: Neurodiversity in the classroom – kappanonline.org

See also:

Bring the backchannel forward. Written communication is the great social equalizer. – Ryan Boren

A contrast between parents and teens in how they use their phones from “It’s Complicated: The Social Lives of Networked Teens”.

The teens I observed were not making calls. They whipped out their phones to take photos of the Homecoming Court, and many were texting frantically while trying to find one another in the crowd. Once they connected, the texting often stopped. On the few occasions when a phone did ring, the typical response was an exasperated “Mom!” or “Dad!” implying a parent calling to check in, which, given the teens’ response to such calls, was clearly an unwanted interruption. And even though many teens are frequent texters, the teens were not directing most of their attention to their devices. When they did look at their phones, they were often sharing the screen with the person sitting next to them, reading or viewing something together.

The parents in the stands were paying much more attention to their devices. They were even more universally equipped with smartphones than their children, and those devices dominated their focus. I couldn’t tell whether they were checking email or simply supplementing the football game with other content, being either bored or distracted. But many adults were staring into their devices intently, barely looking up when a touchdown was scored. And unlike the teens, they weren’t sharing their devices with others or taking photos of the event.

Although many parents I’ve met lament their children’s obsession with their phones, the teens in Nashville were treating their phones as no more than a glorified camera plus coordination device. The reason was clear: their friends were right there with them. They didn’t need anything else.

I had come to Nashville to better understand how social media and other technologies had changed teens’ lives. I was fascinated with the new communication and information technologies that had emerged since I was in high school. I had spent my own teen years online, and I was among the first generation of teens who did so. But that was a different era; few of my friends in the early 1990s were interested in computers at all. And my own interest in the internet was related to my dissatisfaction with my local community. The internet presented me with a bigger world, a world populated by people who shared my idiosyncratic interests and were ready to discuss them at any time, day or night. I grew up in an era where going online—or “jacking in”—was an escape mechanism, and I desperately wanted to escape.

The teens I met are attracted to popular social media like Facebook and Twitter or mobile technologies like apps and text messaging for entirely different reasons. Unlike me and the other early adopters who avoided our local community by hanging out in chatrooms and bulletin boards, most teenagers now go online to connect to the people in their community. Their online participation is not eccentric; it is entirely normal, even expected.

Source: It’s Complicated: The Social Lives of Networked Teens

I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with a selection from “The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.”.

ANI launched its online list, ANI-L, in 1994. Like a specialized ecological niche, ANI-L had acted as an incubator for Autistic culture, accelerating its evolution. In 1996, a computer programmer in the Netherlands named Martijn Dekker set up a list called Independent Living on the Autism Spectrum, or InLv. People with dyslexia, ADHD, dyscalculia, and a myriad of other conditions (christened “cousins” in the early days of ANI) were also welcome to join the list. InLv was another nutrient-rich tide pool that accelerated the evolution of autistic culture. The collective ethos of InLv, said writer and list member Harvey Blume in the _New York Times _in 1997, was “neurological pluralism.” He was the first mainstream journalist to pick up on the significance of online communities for people with neurological differences. “The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”

Source: The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.