invisible strings

Intro

There is good autism information on the internet and there is outdated stuff and a lot of it is simply incorrect and or even harmful. All of the different kinds of information circulate together online and it all moves in patterns.

That’s what this post is about: describing in a general way how those patterns work and identifying a few barriers that are hampering the flow of good information.

The sharing of good autism information across the internet, to state the obvious, is not going well. The situation is unlikely to improve until more people are aware of how and why the flow of information is getting disrupted. I am not going to say anything new here. My goal is to sketch out a few broad trends that are collectively working against efforts to better understand the lives of autistic people.

The pattern is that the internet is taking conversations about autism and forming them into knowledge-icebergs, where reliable information is staying bound up in a limited range of conversation networks.

The following seven sections point to different facets of this issue, but they all connect back to the same theme: this is about the flow of autism information online and the ways that this flow of information is getting disrupted.

I.

Google and the Western, English-language search engine scene is a problem.

In many communities throughout the world, how autism is discussed and reacted to is shaped by traditional spiritual beliefs, not Western medical or psychiatric categories. 

Autism seems to be acknowledged different ways in different places; it can go by other words and understandings. In many cultures, interior experiences like thoughts and emotions are not defined by the clinical boxes of psychology.

This is important to bear in mind. If an entire conceptual framework is different, then the words and phrasings that are used when describing autistic traits will likewise be very different.

When these differences in wording are typed into search engines, they then split into different, separate information-paths.

To say it another way: a piece of online content that uses the “autism” is automatically going to be less relevant to people in the world who are interacting with the same topic via different phrasing.

Search engines, as we interact with them, are creating icebergs of conversation and knowledge. Good information is staying bound up in different, separate, disconnected spheres of the internet.

These icebergs are creating serious barriers to education efforts worldwide and making it more difficult to improve the quality of life for autistic people and for many others in the developmental disability community (this sentence is “the stakes” basically, sorry for putting it here).

II.

The lack of information flow is a problem in both directions. Good information about autism that is phrased in psychiatric or academic terms is staying bound up in like-minded conversation networks. Good information contained in the exchanges that are happening in other parts of the world are likewise forming into distinct internet spheres.

This means it is not all that helpful to think that some communities “lack” autism understanding and need to “learn” them. This would be a self-aggrandizing way for Westerners, particularly white people like myself, to think of the issue. 

It is more the case that people all over the world already have long-standing traditions that inform how they think of, discuss and react to autism. New information from a different culture is often in immediate competition with more customary views, ones that are shared community wide and therefore held in place by intense social pressures. 

“Autism” facts can be difficult to share across cultural thresholds because too many people sharing the facts don’t realize how much less relevant Westernized phrasing makes a lot of what is being shared. 

The better way to view ideal information flow is something like “communication going in both directions” and not the Socratic, one-way, teacher/student version.

Insights that would enrich different understandings are not moving between the conversations and this is in part because search engines are encouraging the formation of disconnected conversation networks. 

I am sorry for being repetitive, I am trying to kind of roll the concepts together as I go.

III. 

Autism has been identified and talked about for a very long time, long before Kanner and Iceberger came along (sorry if I am getting any names wrong, I can be so forgetful). Again, autism can just go by different understandings, different phrasings.

To me, one thing this means is that the Kanner and Iceberger debate is given far too much weight and attention. Every time it is revived, their limitations and biases are revived and autism world gets pulled into ruts that have little informational value.

Kanner and Iceberger both identified fragments of autism. Certainly they shaped how many would view autism in the West, but they significantly undermined that work by focusing exclusively on observations of white male children. They both adopted narrow, limited diagnostic parameters. They caught fragments. 

We need a more meaningful accounting of the experiences autistic people are having- one that includes the wide range of perspectives that are available outside of whiter, English-speaking contexts. Kanner and Iceberger should be known more for the limitations they placed on our knowledge of autism than for the contributions they brought to it. 

Because their metrics are only helpful in understanding a smaller range of experiences, those metrics can’t help but be disproportionately beneficial to white people. If the diagnostic history has that problem, then the words and concepts formed within it are made out of that same problem. Those words have traveled onto the internet and into search engines and have been forming into overly white icebergs of autism knowledge.

In a large scale way, search engines are prioritizing autism information that just isn’t as useful for underrepresented communities. That is true in other countries, where different kinds of conversations are happening. It is true where clinical or neurological views are common. 

To summarize: 

A lot of autism information has a whiteness problem and is generally not being enriched by the perspectives and experiences of communities all across the world. I think if it were- if we all had a better sense of the different views and understandings of autism- the historical ruts we keep getting stuck in would be easier to get out of. 

We would have a path to a better, fuller understanding of autism.

IV.

Parallel to all of this, there are other factors that impact how the information flow works.

I have heard this a lot now: when people from other countries are trying to read English-language messaging about autism, they generally land with information that is brief and easy to understand.

That may seem obvious, but this tendency is having a subtle, growing impact on what search engines are doing to autism information.

Sometimes, people are trying to learn by following conversations in countries where a different language is spoken. People who do this understandably stick with platforms that communicate in short, concise sentences because those are the easiest to translate with those little “translate this” buttons that are attached to many posts. What else can people do in many cases but use those?

Another reason people like brevity is not so much for their own comprehension, but because it can make it a lot easier to share information with family members and neighbors in their community who may reject wording that is too unfamiliar.

All of that is to set up this:

While there are many platforms that create easy to follow messaging, there is one style of content that is made to be as easy as possible to absorb: educational messaging aimed at children and teens. Material like this is often greatly simplified and easy to follow. It also tends to be given a more positive and inspirational tone.

School material- shorter and therefore easier to put into those little translation apps- is what a lot of people are finding when they google the word autism. That inspirational phrasing/thinking then goes along with the translations and it can shape how the information is perceived

Cheery, exuberant memes aimed at younger readers like “Autism is a super power!” have no real informational value and can distort understandings of lived autistic experiences. But it is five words that have a better chance of being accurately translated by the little button than a longer, more nuanced piece would have.

If you have noticed all of the confusion regarding definitions of neurodiversity and disability, the way there can be clashes over the history of an understanding: it is in no small part due to the fact that many people are learning about these concepts in information bubbles that are being influenced by material originally intended for a younger audience.

The issue seems to be less about the school material and more about the little translator buttons. How they work drives which information gets chosen and they seem to create bias in the direction of inspirational, less nuanced messaging.

This is not the biggest problem on the list, but it is common and it is a good example of the kind of telephone game effect that internet tech can have on information.

V.

Another parallel issue to consider: too many people are gaming the system for clicks. I am talking about the measures some platforms take to bend searches their way, regardless of whether or not the information they are sharing is helpful.

Let’s say the message of a facebook or instagram post is something like “I heart autism!” and no other information is provided. And let’s say the creator of that posts adds a dense bundle of hashtags and keywords, hoping that search engines will cast a wide net and increase activity on the post. 

Odds are, it might work. Some people are good at gaming the system. But the effect is that information about autism is getting wallpapered over with empty messaging. 

You will find that these huge hashtag/keyword bundles are more common with frivolous messaging sites than anywhere else. They are intentionally tipping the scales their way and when that happens, their posts get translated by the little buttons, because posts like that are shorter and easier to translate. Over time it is impacting the ways people collect and understand information about autism. 

Using hashtags and keywords is good. It is helpful when people can connect up with material that is relevant to their interests. Using far more keywords than are necessary just to game the system for clicks: this is bad. Those blocks of hashtags even resemble icebergs, they can be huge barriers to the flow of information.

The majority of people who do this are sites who know what they are doing and they do not care. A lot of them have no real connection with autism issues and are mostly about selling handbags and t-shirts with like a puzzle piece and a kitten on them; I see this on facebook more than anywhere else; it is a cash game. Sites like this are generally the worst offenders, but it is common in autistic spaces as well and it, when taken to extremes, can be unhelpful. 

VI.

This is not to say that memes and other short bursts of information are bad. They are invaluable.

Generally speaking, people are much more likely to seek out and learn from very concise material. The tik toks that share autistic experiences, the instagram posts, you tube videos: I frequently hear from people in other countries that these things are the most accessible sources of information for them. They are comfortable to process and follow for those searching the English-speaking internet for autism discussions. 

But wherever possible, we need to be building in more context. Anywhere that it can be fit, I would encourage people to add additional links and information that can help others more fully understand the meaning of a post. Make it as easy as possible to facilitate learning across multiple platforms, not just your own.

Even if a post or video is brief, the content description is a good place to describe more background history, a good place to link to other, like-minded platforms and boost perspectives of those who originate concepts.  The comment section of a social media post often functions like a mini-forum, that is another good space to add in links or clarifying discussion. Anything that helps the flow of autism information move and circulate and not get stuck in internet echo chambers.

What to do about search engine gaming is an issue that goes beyond any easy solutions. My suggestions here are inadequate to the challenge and I am not a tech literate person. These are just initial attempts to describe some of the more obvious impacts that keyword bundles are having.

VII.

It matters because really short, concise messaging carries with it a higher risk of being misunderstood. Without context- without being anchored in a more established understanding- words can get untethered and their meanings can gradually shift into definitions that are at odds with their original formulation. 

Words like “autism” and “neurodiversity” are appearing in tweets, memes, they’re appearing in academic journals and on inspirational hand-bags sold on facebook, they are traveling all over the internet, but as the messaging gets increasingly shortened and the histories get emptied out, the meanings behind the concepts are blurring until they are understood in a multiplicity of ways. 

I will describe this as a way to illustrate one form it takes:

Most autistic adults I know are online talking about managing sensory pain, disability rights, surviving social isolation, dealing with suicidal feelings and so on. Difficult, serious topics. But many others perceive autistic adults as only discussing frivolous, easy topics. And it’s because when they are typing autism-themed words into the internet, search engines are taking them to empty messaging like “Autism is a superpower!” They are not being directed to accurate information because the accurate stuff is like this post, long and sprawling and messy. 

There is so much confusion about concepts like “autism” and “neurodiversity” in part because search engines are teaching people many different, contradictory definitions for all of the most fundamental concepts. 

Outro

Social media companies like Google and Facebook and all of the others: they are giving us broken tools and the breakage is making it harder to educate communities about autism and about the lives of autistic people. Search engines are not prioritizing reliable, current information. Internet algorithms are impeding the flow of knowledge between cultures. Discriminatory histories built into the tech and into the words are driving and reinforcing these widespread communication failures.

This is not a weather forecast. This is the weather.