“Written communication is the great social equalizer.” It allowed me to participate and be a part of things bigger than myself. As I reflect on my life and career in light of a mid-life autism diagnosis, I realize how much I was driven by the desire and need for written communication. I became an engineer who helped build the infrastructure that would allow me to socialize with the written rather than the spoken word. Consciously and unconsciously, I helped create technologies and culture that suited my neurotype.
I’m in good company.
- Technology, Text, and Alternative Socialization
- Online Communication and Autistic Community
- Phones Are Very Stressful
- Bring the Backchannel Forward
Technology, Text, and Alternative Socialization
The curious fascination that many autistic people have for quantifiable data, highly organized systems, and complex machines runs like a half-hidden thread through the fabric of autism research.
Asperger may have been the first clinician to notice that his patients’ imaginations occasionally anticipated developments in science by decades, forcing him to amend his statement that the interests of his little professors were “remote” from real-world concerns. But his joking suggestion that the designers of spaceships themselves must be autistic also turned out to be prescient.
Tommy the Space Child was not the only member of Asperger’s forgotten tribe to turn his youthful obsession with science fiction into a career in science. For many people on the spectrum in the years when they were still invisible to medicine, science fiction fandom provided a community where they finally felt like savvy natives after years of being bullied and abused by their peers for seeming naïve, awkward, and clueless. Another community that enabled autistic people to make the most of their natural strengths in the early and mid-twentieth century was amateur radio. By routing around the face-to-face interactions they found so daunting, even people who found it nearly impossible to communicate through speech were able to reach out to kindred spirits, find potential mentors, and gain the skills and confidence they needed to become productive members of society.
Amazingly, both of these communities were launched by the same man who was likely on the autism spectrum himself: a visionary entrepreneur named Hugo Gernsback, who foresaw the decentralized, intimately interconnected nature of twenty-first-century society before nearly anyone else with the help of his equally eccentric friend, the prolific inventor Nikola Tesla. Along the way, Gernsback and Tesla anticipated the development of television, online news, computerized dating services, videophones, and many other conveniences that we take for granted a century later.
It seems that for success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways.
The revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabled by the limitations of space and time.
The kids formerly ridiculed as nerds and brainiacs have grown up to become the architects of our future.
One day someone will write a history of the Internet, in which that great series of tubes will emerge as one long chain of inventions not just geared to helping people connect in more ways, but rather, to help more and more types of people communicate just as nimbly as anyone else. But for the story here, the most crucial piece in the puzzle is this: Disability is an engine of innovation simply because no matter what their limitations, humans have such a relentless drive to communicate that they’ll invent new ways to do so, in spite of everything.
You could describe this in that old cliche that necessity breeds invention. But a more accurate interpretation is that in empathizing with others, we create things that we might never have created ourselves. We see past the specifics of what we know, to experiences that might actually be universal.
A useful artifact of this fascination for technology, text, and alternative socialization is the rise of backchannels.
Backchannel is the practice of using networked computers to maintain a real-time online conversation alongside the primary group activity or live spoken remarks. The term was coined in the field of linguistics to describe listeners’ behaviours during verbal communication. (See Backchannel (linguistics).)
The term “backchannel” generally refers to online conversation about the conference topic or speaker. Occasionally backchannel provides audience members a chance to fact-check the presentation.
First growing in popularity at technology conferences, backchannel is increasingly a factor in education where WiFi connections and laptop computers allow participants to use ordinary chat like IRC or AIM to actively communicate during presentation. More recent research include works where the backchannel is brought publicly visible, such as the ClassCommons, backchan.nl and Fragmented Social Mirror.
Source: Backchannel – Wikipedia
Both kids at school and adults at work, regardless of neurotype, benefit from backchannels. “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.“
Online Communication and Autistic Community
Backchannels especially support autistic people. “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.” “Online communication is a valid accommodation for the social disability that comes with being Autistic. We need online interaction.” “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).“
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.”
Until one day… you find a whole world of people who understand.
The internet has allowed autistic people- who might be shut in their homes, unable to speak aloud, or unable to travel independently- to mingle with each other, share experiences, and talk about our lives to people who feel the same way.
We were no longer alone.
One could make the argument that autistic people created the very computer environment autistic people are most comfortable in.
In fact, there is pretty good evidence that most of the science, technology, and arts you enjoy are the products of autistic minds.
Phones Are Very Stressful
Phones are very stressful. ‘Call if you have a problem’ is an inaccessible gauntlet for me and many others. If you work with neurodivergent kids, keep in mind that their parents are likely neurodivergent too. 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.“
Considering that autism professionals must know how we autistics struggle with verbal communications, it is troubling how few willingly offer alternatives. My life, and my ability to advocate for my son, has been immeasurably improved through the use of email.
If you do one thing to improve your service, please provide your email address and show willing to communicate in this format. I can think of no reason to withhold email addresses, and am not sure what’s stopping you.
When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact
There’s a lot of misunderstanding about autistic people, and phone calls.
Many autistic people are not always able to speak, or may not be able to speak at all.
Unfortunately, not a lot of people know this. So there can be major difficulties with people misunderstanding what’s happening.
Lots of autistic people can only sometimes use phones. It’s a major barrier to healthcare, to job success, to getting basic services and basic human rights. It’s great when companies and organisations know the law, want to work with us, and create different ways to interact. Text. Email. Webchat. Timed called with a known person. Anything that works for us as individuals.
Quantitative data indicated that email ranked highly when accessing services, seeking customer support and communicating about research. When communicating with family, friends, in employment and in education, both face-to-face and written modes (email or text message) were preferred. In the qualitative data, four main themes were identified: Not the Phone, Written Communication, Masking versus Autistic Communication and Avoiding Communication. There is a clear message that mode of communication can be either enabling or disabling for autistic people. A reliance on phone calls can create barriers to access, yet the option to adopt written forms of communication can improve accessibility. For known connections, the preference for face-to-face communication is dependent upon how close and accepting the relationship is.
When contacting unknown people or organisations, we found that generally email was preferred, and phone calls were very unpopular. However, for friends, family and people they felt comfortable with, they preferred both face-to-face and written forms of communication (e.g. email and text message).
Implications for practice, research or policy
The findings suggest that services should move away from a reliance on phone calls for communication. They should make sure that access to support is not dependent on the phone, and instead offer written options such as email and live messaging which are more accessible. Future research should investigate the impact of COVID-19 on autistic people’s communication preferences, as video calling has become much more commonly used and potentially combines benefits and challenges of other modes discussed in this article.
The existing evidence suggests that autistic people may prefer written modes of contact. For example, autistic adults perceived success of healthcare interactions is asso- ciated with their willingness to provide written mode options (Nicolaidis et al., 2015), and a survey on Internet use indicated that autistic people typically preferred email over face-to-face interaction (Benford & Standen, 2009). It seems that written communication may diminish some of the social interaction challenges autistic people experi- ence in face-to-face contexts. Benford and Standen (2009) interviewed autistic Internet users, who reported that writ- ten Internet-mediated communication provides more con- trol, thinking time, clarity and fewer sensory issues and streams of information that must be processed and inter- preted. Similarly, Gillespie-Lynch et al. (2014) reported autistic people to perceive computer-mediated communi- cation as beneficial, as it provides more control and increased comprehension in interactions. Consequently, there are reports of autistic adults utilising Internet- mediated modes of communication to foster and develop social connectiveness and relationships (Burke et al., 2010). This previous research has focused on Internet usage, yet there are a range of similar communication modes available. This study aims expand this work and explore the autistic community’s communication mode preferences more broadly, in range of different scenarios.
The sound of the phone ringing can immediately evoke anxiety for some people, especially for autistic people and people with anxiety. If the call hasn’t been agreed in advance, many of us find ourselves simply unable to answer it and let it go to voicemail. Why is this?
Bring the Backchannel Forward
Bring the backchannel forward. Embrace the equalizer. Backchannels accommodate neurological pluralism while fostering the serendipity of networks. Backchannels are vital parts of the internal networks that allow us to tap into not just “a diversity of voices, but a diversity and divergence of thinking and ideas.” Build such networks in your school with indie ed-tech. Look to distributed work for ways to integrate backchannels into education and workplace cultures.
Excerpted below are selections from teachers, tech workers, and autistic people on the benefits of backchannels.
A backchannel is a separate, often text-based, discussion students engage in while they’re receiving information via a lecture, a movie, a television show, or a PowerPoint presentation. Students use a digital device to participate in a behind-the-scenes chat so as not to disturb others trying to listen.
Backchannels provide the perfect outlet for students who have something to say but refuse to open up in class discussions. When everyone participates in the conversation, no one feels singled out. As a result, inhibitions about sharing decrease and the courage to speak up increases. Plus, when everyone types at once, the teacher spends less time calling on students one by one.
I personally believe that the backchannel is the greatest unharnessed resource that we as educators have available to us. It does not threaten me nor bother me that you learned as much if not more from the backchannel the other night — in fact, it makes me feel great that I facilitated the connection.
And that’s not even touching on the ways 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.
Whenever you “teach,” there is a “back channel.” It has always existed in every classroom, every lecture hall, every on-line learning environment.
It includes, “Hey, what did she say?” “This sucks.” “I don’t understand.” “That’s stupid, why doesn’t he answer the question?” “Do you know how to do this?” “When is that paper due?” even, “C’mon, come to the party with me tonight.”
In other words, students are talking, or passing notes, or rolling their eyes at each other as you talk, or asking for answers, or help, or complaining, or wondering, or wishing you’d get to stuff that somehow connected the topic to their interests.
I really began to appreciate the value and potential of this back channel a couple of summers ago taking an International Education course. Every time some claim was made Google searches exploded across the room, followed by emails: “That’s not true.” “Go this link.” “The UN says this…” And after that burst of activity someone would interrupt the class with a new data set or collection of opinions.
Powerful, powerful stuff.
Written communication is the great social equalizer.
Remember this if you start to fear your Autistic child is spending too much time interacting with others online and not enough time interacting with others face-to-face. Online communication is a valid accommodation for the social disability that comes with being Autistic. We need online interaction and this meta-study demonstrates exactly why that is the case.
I couldn’t help wondering, since the study showed the durability of first impressions and the positive response to the written words of Autistics, with all visual and auditory cues removed, could we mitigate childhood bullying in any way by having a class of students meet first online, in text, and form their first impressions of one another in that format before ever meeting face-to-face?
Getting online was revolutionary and may have saved my life.
The difference between offline and online communication could not have been more dramatic.
For the last few years, I’ve been spoiled. I’ve been surrounded by people who, when asked a question, immediately bring out a digital device and look it up. The conferences that I’ve attended have backchannels as a given. Tweeting, blogging, Wikipedia-ing… these are all just what we do.
I have become a “bad student.” I can no longer wander an art museum without asking a bazillion questions that the docent doesn’t know or won’t answer or desperately wanting access to information that goes beyond what’s on the brochure (like did you know that Rafael died from having too much sex!?!?!). I can’t pay attention in a lecture without looking up relevant content. And, in my world, every meeting and talk is enhanced through a backchannel of communication.
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.
Source: Dr. Elena M Chandler on Twitter: “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. #TheMoreYouKnow… https://t.co/Y2hZT8UBr9”
One could make the argument that autistic people created the very computer environment autistic people are most comfortable in.
In fact, there is pretty good evidence that most of the science, technology, and arts you enjoy are the products of autistic minds.
The results were remarkable. The employees who had used the tool became 31% more likely to find coworkers with expertise relevant to meeting job goals. Those employees also became 88% more likely to accurately identify who could put them in contact with the right experts. They made these gains by observing what their coworkers talked about on Jive-n and with whom. The group that had no access to the tool showed no improvement on either measure over the same period.
These tools can promote employee collaboration and knowledge sharing across silos. They can help employees make faster decisions, develop more innovative ideas for products and services, and become more engaged in their work and their companies.
Over the past two decades organizations have sought some of these benefits through knowledge management databases, but with limited success. That’s because determining who has expertise and understanding the context in which it was created are important parts of knowledge sharing. Databases do not provide that type of information and connection. Social tools do.
But we have found that companies that try to “go social,” as many of them call it, often fall into four traps. Here we’ll look at those traps and share recommendations for capitalizing on the promise of social tools.
Inability to tap into the diversity of thinking and novel and new ideas that exists within those networks, severely limits our individual and organizational ability to move into the future in a much more progressive and relevant manner.
It is within these spaces, these networks, that connectivity is acquired and achieved, cognitive resources and idea flows are managed and exchanged, and where provocation for action upon these ideas is often mediated, accelerated and catalyzed.
Or as the work Network Science by the National Research Council shares, “Networks lie at the core of the economic, political, and social fabric of the 21st century.” For which the National Research Council adds, “Society depends on a diversity of complex networks for its very existence.” And yet, “In spite of society’s profound dependence on networks, fundamental knowledge about them is primitive,” at best.
What we are learning, especially as we look at the scaling up and proliferation of networks across society, and the level of data and knowledge they are providing, is that today’s organizations must learn to support a much more robust and dynamic set of internal and external networks, utilizing a variety of metrics that lead to a greater understanding how divergent idea flows, as well as organizational novelty and innovation awareness and dissemination can be cascaded across the organizational landscape in much more fluid, clear and coherent manner.
Today’s organizations must be able to unlock and engage both internal and external networks, in an effort to not only tap into a diversity of voices, but a diversity and divergence of thinking and ideas. These networks not only provide a platform for engaging an ongoing flow of the novel and new, they also create a cognitive space to play with ideas that often leads to not only the creation of new knowledge, but new actions and new ways of working.
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.
I have developed a strong preference for written communication, which is a very effective strategy for avoiding the need for linguistic autistic masking.
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)
Over the last 200 years, starting with the deployment of the first electrical telegraphs, human societies have been incrementally equipped with global zero-marginal cost communication technologies, culminating in what we now refer to as the web. This development, made possible by people with creative autistic minds, has fundamentally altered the social power dynamics within human societies.
On the one hand modern industrialised empires, states, and corporations have unprecedented abilities to influence and manipulate large populations, and on the other hand, there is nothing that can stop autistic and otherwise neurodivergent people from connecting and collaborating across spatial and cultural boundaries.
For me and many other LGBT individuals with autism, the internet has been a socialising goldmine, filling in the gap left by our inability to engage with other LGBT spaces. Online, tone of voice and nonverbal facial expressions are removed as factors from understanding conversational intent, with words alone explaining intent. Social media allows me to socialise with other LGBT people, regardless of their location, while controlling my sensory information. I can listen to my own music on loop, eat my texture-limited foods, in comfortable clothing, under a weighted blanket, in my own home while making a new friend who communicates by saying the words they mean directly.