Visualizing the Autism Spectrum

What do you envision when someone says, “autism spectrum”?

Like most people, you probably imagine a line going from mild to severe, or good to bad, or something similar. At one end would be neurotypical (non-ASD), at the other severely autistic.

The problem is that’s not how the spectrum works. I learned this when C was diagnosed and I, like any parent, wanted to find out where he was on this so-called spectrum. Was he in the middle? Toward the more severe end?

It wasn’t that the experts couldn’t or wouldn’t answer me. It’s that I was asking the wrong question. I wanted to be able to plot his autism on a linear scale, but the autism spectrum isn’t linear at all.

So I did my own research to figure out what C’s autism looked like. I felt like visualizing it would help me understand where his strengths and weaknesses were. However, several trips to Google left me more befuddled than ever: there wasn’t any agreed-upon visualization of the autism spectrum.

Since I earn my living trying to make complex things simple and easy to understand, I decided to create my own autism spectrum diagram, something that would provide a more accurate representation of the condition.

I based my visualization on the fact that there are three generally accepted axes for ASD: social, communication, and behavioral.

On each axis, the range goes from typical — what we'd expect to see in a non-ASD individual — to severely impaired. Here are the generally accepted criteria for each axis:

Social impairment

Problematic nonverbal behaviors; failure to interact appropriately with peers or make friends; playing alone while other children the same age approach each other, cooperate and imitate each other; problems sharing interests, achievements or pleasure with others; problems responding to social and emotional cues.

Communication Impairment

Delay or absence of speech with no attempt to compensate by using gestures; an inability to carry on a conversation even when speech is adequate; stereotyped and repetitive language; lack of imaginative play.

Repetitive Behaviors or Interests

An interest of intense or abnormal focus; rigid adherence to a routine or ritual that has no purpose; repetition of particular movements or gestures; persistent preoccupation with parts of objects.

My Visualization of the Spectrum

My diagram helps visually distinguish the three primary forms of ASD — Autistic DisorderAsperger Synrdome, and PDD-NOS — from one another. (C has Autistic Disorder.)

Hypothetical “classic autism” diagram

Hypothetical PDD-NOS diagram

Hypothetical “aspergers” diagram

Plotting the level of impairment is subjective, of course, and one’s point on each axis may change over time, with therapy and other treatments. Nonetheless, what my diagram shows is that the so-called autism spectrum doesn’t result in a single point plotted on a line, but several points that create a shape, a map of each individual’s unique ASD landscape.

Of course, the diagrams above are hypothetical, not based on any particular individual. In reality, each individual would map differently based on their own levels of impairment.

What Do You Think?

My diagram is a work in progress. I’m not formally educated in autism spectrum disorders, obviously, but I felt this format was helpful. What do you think?

Originally published at on March 14, 2012. I am presently working on a total redesign of this diagram based on my expanded knowledge and experience with autism.

Designing a digital community one level at a time

Spoiler: you might only need one level

The vibrant and convivial restaurant with a hive of happy diners will draw more customers than an empty one.

Cultivating an online community can be a powerful way to attract, engage and retain an audience. We’re social creatures, after all. But digital communities are difficult to build and maintain, and getting them right requires a lot of planning, resources and time.

Considering that comments sections—the only communal areas on many sites—are notorious garbage fires, and social networks tend to make us hate ourselves, it becomes clear why organizations are often loathe to make the leap. It’s risky, a potential resource suck, and usually hard or impossible to demonstrate ROI. But does it have to be so?

In a recent meeting about developing community on TED’s flagship site and apps, I suggested that a sense of community could be the first step, and I used that word—sense—quite intentionally: when we remove the feeling of aloneness, we begin to create the sense of community. And creating that sense of community might be all we need to do. It’s not all or nothing.

I went on to describe three tiers of community, each correlating to an increased level of effort, cost, resources and risk:

  1. Exposure

  2. Contribution

  3. Interaction

1. Exposure

This is the sense level. Put simply, exposure is where we show that people are engaging with us using data we already have. It’s merely a matter of finding the right way to play that data back to them.

On TED, for example, this could be as simple as showing how many views a video has generated: six million views means six million people have engaged with that bit of content. It could mean a map showing where all the views for a given video originated; imagine seeing that most views for a TED Talk were in North Africa and Southeast Asia, while another talk was popular in Europe and North America. Does that start to create a sense of community?

One of my sons standing in front of TED’s visitor counter

At TED HQ, we have a large, real-time counter showing the number of views we’ve generated thus far on any given day. We’re exposing our data to show staff and visitors how many people are engaging with us. We’re using simple numbers to visualize our community. In a similar vein, I can picture our home page displaying how many people are on our site at that very moment.

“Hey, I’m not alone. 3,423 other people are here with me right now.”

We might show a visitor that 264 other people around the world are watching the same TED Talk. Perhaps we could use a world map to show where the viewers are. What might it feel like to know someone within a few miles was watching a TED Talk with you? Or that most of the other viewers were in China? (Note: avoid the creep factor.)

We could let someone with a TED account see how many other account holders are in their town, state, or county—without exposing any personal data, of course. We could show them the numeric impact of their shares and recommendations. How might it feel to learn that your recommendation inspired over 10,000 people around the world to watch a talk you loved?

What if instead of numbers, we used dots, each representing a viewer. What if these dots were placed around a map of the world, flickering and flashing with activity? What if you could see connections between the dots based on talks each dot—er, person—has watched? What if you could click on a dot to see some basic profile information? Is this how community starts?

What if in our app you could see how many people in the world had similar interests as you, and where they lived? Maybe you’d discover people who love neuroscience cluster in and around cities, while people with an interest in personal growth are found in coastal regions? This could expose some fascinating insights about TED’s global community.

These are just a few ideas for what we might do to create a sense of communityand are obvioulsy somewhat specific to TED. But they show how exposure—playing data back to users—might begin to create the sense of a vibrant and active community, a community defined by a shared love of ideas delivered via spoken word.

Exposure is low risk, and relatively low effort.

2. Contibution

Contribution is the next level, and it’s where things start to get more complex, more costly, and riskier. Contribution means user-generated content. It means letting people post their thoughts, their comments, their ideas. It might mean user profiles with photos, bios, links.

Contribution requires platforms or tools to ensure that user-generated content is positive, additive, not detrimental. It requires moderation by staff or contractors, or identifying and empowering sub-communities to help out.

One recent example of contribution on TED is the personalized recommendations that accompany most of our video content. These are heartfelt messages from our audience members articulating what a particular TED talk meant to them, and why they think others should watch it, too. But even something as simple as short recommendations shared with our global community requires a fair amount of care and curation.

Contribution is democratizing, but it can also be noisy and ugly. Nonetheless, if done right, contribution is a way for users to feel they are truly adding to the experience, and thus have an investment in the community. Examples abound; see, for example, Quora.

3. Interaction

Interaction means providing avenues and forums for people to engage directly with one another. It means connecting, networking, relationship building. For obvious reasons, it’s the hardest level of community to develop, the most costly, and the riskiest.

Done right, and in the correct context, however, interaction can be a powerful way to engage people in your digital community. But if it’s not an explicit organizational objective to develop networks based on direct interaction, it probably isn’t worth the time, effort, or risk.

Back to my earlier analogy: when I stand on the sidewalk outside the bustling restaurant, my thought isn’t that I want to interact with every diner I see on the other side of the plate glass. More likely I’m thinking, “Wow, this must be a good place to eat. It feels lively.”

In other words, creating a sense of community doesn’t require interaction, and it may not even require contribution. It can be as simple as letting people know they aren’t alone, that they’re engaging in a shared experience.