The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

Game-Changing Research in the World of Communication Rights

This week, I woke up to some big excitement in the world of communication rights. It was surrounding an academic study that had just been published: Eye-tracking reveals agency in assisted autistic communication (Jaswal, Wayne, & Golino).

The excitement might not be immediately obvious to anyone unfamiliar with the subject, so I wanted to jump on the chance to break it down and let fellow reliably-speaking autistics join in the excitement.

The study comes on the heels of years of concerted efforts to downplay the potential for authentic communication with new teaching methods. Jaswal et al. describe the situation, with reference to the message-passing experiments that were popular with facilitated communication.

Studies with nonspeaking autistic people who type while an assistant supports their hand or arm have shown that the text they compose can be influenced by the assistant: If the typist and the assistant are shown different images, for example, the typist rarely types the name of the image they were shown and may instead type the name of the image the assistant was shown. The results of these experimental “message passing” tests have led many scientists to conclude that anyone who appears to communicate with assistance […] is actually responding to subtle cues from the assistant.

The crux follows, though:

Yet behavioural scientists have shown repeatedly that tests that fail to take into account a group’s unique developmental history can underestimate or misrepresent the abilities of members of that group.”

Autistic advocates know many examples of this! As a prominent example, in 1985, Simon Baron-Cohen et. al. published a fairly famous study, “Does the autistic child have a “theory of mind?” The procedure they used is sometimes called the “false belief test.”

In short, it involves a narrative played out between two dolls (Sally and Anne), wherein the participant must correctly identify that Anne will look for a marble where she thought it was, not where Sally placed it when she wasn’t looking; presumably indicating that one understands what Anne is thinking.

“Theory of mind” has gone through various changes since that time, and particularly because autistic people have refuted the theory very soundly. In 2019, Gernsbacher and Yergeau published a review of studies of theory of mind in autistic people, “Empirical Failures of the Claim That Autistic People Lack a Theory of Mind,” which is incredibly extensive.

Back to communication, though: researchers have not yet come up with a successful controlled message-passing experiment, and there have been numerous hypotheses laid out for why that could be, particularly when people who have learned to type or spell to communicate regularly pass information unknown to their support people.

Because of this, teaching methods that rely on both physical assistance (like facilitated communication, or FC) as well as methods which rely more on non-physical prompts (RPM, S2C) have been plagued by Skeptics claiming that even those who have achieved independent typing or spelling are somehow being “cued” by their support person.

Using eye-tracking technology was an excellent choice in terms of examining the process of spelling as communication. It provides the quantitative data that skeptics demand while examining communicative agency in a real world setting. Many of the same skeptics have suggested eye-gaze communication devices as an alternative to letterboards, so it is clear that eye-tracking is a trusted technology.

(Eye-gaze technology is theoretically a possibility for nonspeakers, though there are certainly a lot of barriers; it may not financially plausible; it might not be a sensory possibility; a person would have to be trained to use it in the same way that spellers need to train their motor functioning to point at letters; and finally, expensive technology and the unpredictable movements of an apraxic autistic person just might not be a good mix.)

In this study, the researchers took nine nonspeaking autistic participants and asked them open-ended questions about a piece of text. They used head-mounted technology to track where the participants’ eyes were looking as they responded to the questions (by pointing to letters to spell their answers).

“The accuracy, speed, timing, and visual fixation patterns reported here suggest that participants were not simply looking at and pointing to letters that the assistant holding the letterboard cued them to. Instead, our data […] suggest that participants actively generated their own text, fixating and pointing to letters that they selected themselves.”

This is why the study is a big deal in the nonspeaking world. It provides empirical evidence of communicative agency; that the “blanket dismissal” of assisted communication (particularly by organizations such as the American Speech-Language-Hearing Association) is “unwarranted” … the same thing communication rights activists have been saying for years now.

It is only one step, but it’s a big step. I’ve checked around, and I know that dedicated skeptics are already trying to figure out how to discredit the results, but so far, none of them have directly addressed the data collected.

All we have to do now is wait for other studies to replicate the findings. We live in exciting times!

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