CW for autism, ABA, eugenics

This write-up results from a rabbit hole I went down about a year ago when I was on my delightful little corner of the internet, which was mostly autistic and trans. This was before I reluctantly left twitter & floated around, like a dandelion seed, looking for fertile soil (the fediverse I guess). I logged onto twitter one day & autistic twitter was in a tizzy. This was because there was a study that had been published that scraped the hashtag #actuallyautistic for tweets to essentially create its own autism diagnosis algorithm.

When autistic twitter found out about this after the study had been published, of course, a lot of them had negative things to say about the study, the aims of the study, and the methods they used to approach those aims. There are many more instances at this point of researchers scraping tons of data from unknowing communities, so I’m not going to litigate the ethics and concerns of this. I personally took it upon myself to understand where the motivation for this was, and why this was happening.

This brought me to one of the researchers of the study. His name is Peter Johnson, and in late 2023, the lab he belonged to, the Hawaii Digital Health Lab (whose website is now curiously offline) was rewarded a $2.1m grant for studying autism. In the linked article, he is quoted.

“Diagnostics for childhood and adolescent psychiatric conditions are inaccessible to many populations due to long waiting lists, lack of health insurance and the absence of proximity to the nearest available and affordable clinician,” Washington said. “We hope that the project will result in convenient and affordable psychiatric healthcare for families living in places such as rural Hawaiʻi.”

What caught my eye, personally, was that he mentioned “long waiting lists” and technology as being a solution for this. This is because autism has expanded as a definition and diagnosis, and has also expanded in popularity since the 90s as it has caught on culturally. An industrial base has grown since the 90s around autism as something to be identified and cured, which has given rise to the enormously lucrative ABA industry. It is currently the standard “treatment” for autistic people in many states, including New York and Washington, including the US military.

As you can see, ABA certificates have been given out in a surprisingly neat growth pattern since the 90s, going from 0 in 1999 to almost 60,000 per year in 2022. Source

The concept and definition of autism over the past 50 years has grown significantly, and with that, cultural relevance has grown as well. It has never been a static category. (if you’re curious about what I mean, here is a history of the expansion of autistic diagnostic criteria). This along with other factors is why many right-wingers believe that autism is an epidemic, and are frantically looking for a “cause”. This also contributes to the categorization of autism as a disease, and therefore something that needs to be fought - I do also recognize the irony in COVID not being addressed in any discernible way at the same time. At the same time that technology is reaching critical mass in identifying autism, which will not be 100% correct, this seems like a confluence of events.

Peter Johnson is also connected to a larger ecosystem of “autism tech” bros who seem to be doing the same thing the rest of Silicon Valley has been doing - trying to solve literally everything they perceive as a problem with technology.

In his dissertation, titled “Machine Learning and Crowdsourcing for Digital Behavioral Phenotyping”, he echoes the interview I pulled from earlier:

“…there are major bottlenecks to care, with a massive shortage of clinicians for diagnosis and treatment, disproportionately affecting underserved populations. This thesis centers around developing a streamlined system for continuously phenotyping children with potential developmental delays by leveraging distributed non-expert crowdworkers in conjunction with machine learning algorithms”.

Once again, he mentions that there are just too many people to diagnose! We must use technology! This illustrates, to me, what technology is often used for - with an ever-decreasing workforce due to increasing concentration of capital, the tech industry frequently uses tech as a replacement for labor.

He lists a man named Dennis Wall as his primary advisor, and in his acknowledgements he also mentions that Mr. Wall ever so graciously financed a Hawaii trip for him and his fiance. On top of that, his thesis was built upon previous research from Dennis Wall, and his Stanford lab, Wall Labs. The dissertation itself mentions autism 528 times, and most of it is based around identifying and treating autism, also at Wall Labs.

Wall Labs included a few different researchers who initially did a lot of work with Google Glass (yes, I know) - after Google Glass was proven to be a failure, they tried to use it as a tool for ABA - the idea being that Google Glass could help autistic children recognize emotions and cue them act “correctly” in social situations.

“The aim is to use the best of the current Applied Behavioral Analysis (ABA) methods and combine them with the rise of technology over the last decade. Current ABA methods for helping autistic children develop social skills consist of rote memorization through means such as flashcards.” Source

As an autistic person myself, I can’t imagine anything more off-putting than having something police my behavior with the tirelessness of technology.

Thankfully, Google Glass did not end up getting a lot of support and the project seems to have fizzled out. But Dennis Wall powered on, smelling that VC money just around the corner. He founded a company called Cognoa for this purpose back in 2013, and below I’ll list a quick timeline:

• 2017 - $12m round of funding
• 2021 - FDA approval for diagnostic tool using AI
• 2022 - Another $12m round of funding
• 2023 - Signed with the Health Transformation Alliance
• 2024 - Signed Highmark as an insurer
• 2025?

With the rise in AI software and the merging of surveillance software, this seems to be a potentially catastrophic situation for autistic people - especially with RFK Jr. looking to create an autism database.

I’m sure Cognoa isn’t the only company in this space, but I wanted to provide a deep dive into the origins of the technology side of this, which in my mind is relatively underreported, and also a recent history of autism as a concept. These two seem to be, in my mind, on a crash course, and personally I’m not excited to see what happens. Speaking from experience, no one autistic ever decides what happens with the autistic community, the new infrastructure being built for them, or anything. We’re kinda just along for the ride.

I’m happy to do more writing on this as I do have more to say about autism & the connections to technology & fascism, but I’ll leave it here for now.