Vikram Jaswal is Professor of Psychology at the University of Virginia. His research focuses on communication and social interaction in autism, inspired and informed by the lived experiences of autistic children and adults and their families. We spoke with Dr. Jaswal about his research validating and supporting non-speakers with speech disabilities in their communication efforts, including facilitated communication. His lab website is www.jaswallab.org.
Thinking Person’s Guide to Autism: Can you please talk about your work on communication in nonspeakers, how you came to be in this field of study, and why it is important?
Dr. Vikram Jaswal: The nonspeaking autistic people I’ve gotten to know are the inspiration and motivation for the work I do. I was trained as a developmental psychologist, not an autism scientist. For many years, my research focused on questions about language, cognitive, and social development in typically developing kids. But about seven or eight years ago, I had a transformative experience: I had the chance to spend a week with a group of nonspeaking autistic young adults. One way that members of this group communicate is by pointing to letters on a letterboard held by a trained communication and regulation partner.
These young adults were taking part in a seminar series that summer, and I had been invited to join them to discuss research in psychology; they were particularly interested in research about autism. I’d never spent time with a group of people who communicate in this way, and I didn’t know what to expect. But I left each of our meetings with my jaw on the floor and my mind on fire.
It’s difficult now to think about the ableist assumptions I went into that week with, but honestly, I was bowled over by the group’s curiosity, humor, and thoughtfulness. I was also moved by the friendships I saw and the care members of the group showed for one another. None of this fit the textbook narrative of autism that gets fed to undergraduates or the deficit-focused research that is so pervasive in autism science.
I’ll share a couple of memorable moments from that summer seminar. One of the most famous experimental studies in all of autism science (and arguably, one of the most damaging to autistic people) claimed that autistic children lack a theory of mind. (For a recent review of empirical failures of this claim, see here.) Theory of mind is, roughly, the understanding that people have mental states like beliefs, emotions, and intentions that motivate their behavior. I won’t bother going through the details of the study here, but I described it to the seminar and asked for their comments. There were lots of critiques.
I asked one nonspeaker to generate an idea for an experiment that could tap into whether autistic people understand that behaviors are motivated by intentions. He quickly spelled something like, “I’d make a movie of someone about to go into a bathroom. I’d stop the movie and ask the subject what the person was about to do.” Impressive! What a simple and elegant way to get at the understanding of intention, I thought.
About five minutes later, another nonspeaker—who had been jumping around the room, listening to music through headphones during most of the conversation, and whom I had assumed was not paying attention (another of my ableist assumptions)—suddenly began waving his hand. He spelled, “If I were a subject in X’s experiment, I’d want to know whether the actor in the movie was autistic.” When I asked why, he explained, “Because if the actor was autistic, maybe he was going into the bathroom to take a sensory break rather than to use the bathroom.” Talk about sophisticated reasoning about another person’s mind!
Finally, at the end of the week, I spent some time describing the terrible history of research on (and claims about) intelligence and autism, and we had an intense discussion about the negative consequences of IQ research in education—especially for nonspeaking autistic students. I also highlighted a refreshing, strengths-based approach to thinking about intelligence in nonspeaking autistic kids done by Canadian scientists. We were going around the room, sharing thoughts about this work when one young man spelled, “Vikram, how can I collaborate with you at UVa [the University of Virginia]. Why should we let the Canadians have all the fun?”
Lucky for me, in the years since then, I have had the opportunity to collaborate with, learn from, and have a lot of fun with this group of nonspeakers (they call themselves “The Tribe”) and with many other nonspeaking people. One collaboration that I’m particularly proud of was a year-long community engagement seminar I used to teach at the University of Virginia called “The Science and Lived Experience of Autism.” Each year, undergraduates at UVa had the opportunity to get to know and learn from The Tribe and other nonspeaking autistic peers, through an online platform and several day-long in-person “exchanges.” During those events, we would get together to discuss everything from the cascading effects of motor differences early in life to how best to create welcoming communities.
So I have had the chance to get to know—to really get to know—many nonspeaking autistic kids and adults who communicate by spelling, their families, and the people who support them. The greatest challenge they have reported is the unbelievable institutional resistance to the method of communication that is most effective for them: pointing to letters on a letterboard held by a trained communication and regulation partner.
A complete explanation of where this resistance comes from would take us far afield (for summaries, see the first chapter of this recent book, or this recent piece in Frontiers in Psychology). But the short story is that a small, loud, and strangely influential group of individuals has dismissed the possibility that people who communicate with assistance from someone else are conveying their own thoughts. They insist that all users of these methods are actually being directed to point to particular letters by subtle cues that the assistant provides. This group of skeptics has made it impossible for nonspeaking autistic people who communicate with assistance to get the support they need in schools (see, for example, here). Some of these skeptics regularly ridicule and denigrate users of these methods and the people who support them.
I doubt these skeptics have spent any time with nonspeaking people who communicate with assistance. They don’t seem to understand that the assistance is meant to help individuals gain the skills to be able to communicate independently, or that some individuals who used to require assistance now type independently (here’s one example). They don’t seem to understand the significant sensory-motor and regulatory challenges experienced by most nonspeaking autistic people, which the trained assistant helps to mitigate. And they don’t seem to be aware of research showing that some communication interventions they believe are evidence-based (e.g., pointing to pictures, verbal training) are not effective for most nonspeaking people.
So, inspired by the nonspeaking spellers we’d gotten to know, my colleagues (Allison Wayne and Hudson Golino) and I conducted a study to investigate how plausible a cueing explanation was for their spelling skills. We measured how quickly and accurately nine experienced letterboard users looked at and pointed to letters as they responded to several questions. If spellers were responding to cues from the assistant, we know from research in cognitive psychology that this would take time and be subject to error—imagine having to isolate one target letter out of 26 on the basis of some kind of subtle cue the assistant provided, and then having to do so for each letter in each word in a response that is several words long.
The participants in our study pointed to about one letter per second, rarely made spelling errors, and looked at the next letter in a response about half a second before pointing to it. Additionally, they showed a couple of patterns in their response times that, when observed in non-autistic typists, have been attributed to cognitive processes underlying fluent spelling: They were faster to look at and point to letters within words than letters between words, and they were faster to point to the second letter in more common letter pairs than less common letter pairs (e.g., “e” following “h” than “e” following “j”).
Given the speed and accuracy with which the participants in our study spelled and given well-documented constraints on human information processing, we argued that cueing from the assistant was an implausible explanation for their performance. Instead, we argued that participants in our study looked at and pointed to letters they had selected themselves–they were demonstrating what we called “communicative agency.” (The paper is freely available here. A 20-minute talk about the study given at the 2021 UC Davis Neurodiversity Summit is here, and more details about the study—including an animated abstract and FAQs—are here.)
I think the study is important because it suggests that the blanket dismissal of assisted autistic communication is unwarranted. Our study shows that some nonspeaking autistic people who communicate with assistance can convey their own thoughts.
Of course, there is much more research to be done. But access to communication is a fundamental human right, affecting everything from educational opportunities to the ability to participate in medical decision making. I believe we should be supporting folks to learn to communicate in as many ways as they can. I hope that our study helps open the door for more research on assisted autistic communication. I hope it also gives pause to those who seek to deny access to a method of communication that is clearly effective for some nonspeaking autistic people.
TPGA: You recently said that 30% of autistic people aren’t able to use speech effectively (whether non- or partially-speaking). You also said that we don’t yet know why—but that it likely about motor control and not about motivation. Can you elaborate? Are you talking primarily about dyspraxia and apraxia, or are there potentially multiple factors?
Dr. Jaswal: Not long ago, some prominent autism scientists wrote that, “the almost complete absence of any social motivation may be associated with no spoken language.” Their claim was carefully worded: They suggested that lack of social motivation may be “associated with” no spoken language without explicitly claiming that it was the cause. But given the context and a pervasive assumption that autistic children and adults lack social motivation—an assumption for which the evidence is problematic and which is contested by many autistic people (for a colleague’s and my take on these issues, see here and here)—I think a fair reading is that these authors were suggesting a causal link.
I was astounded because I have never met a nonspeaking autistic person who lacked the motivation to engage in the social act of communication. They may lack the tools to be able to communicate in a conventional, language-based way. But to claim (even if indirectly) that their inability to effectively use speech stems from lack of social motivation suggests to me that these scientists may not have had the chance to spend much time with nonspeaking people or to appreciate the many ways they communicate and the many reasons they may not be able to communicate effectively using speech.
As you noted in your question, we don’t yet know why about 30% of autistic people cannot communicate effectively using speech. But speech is the finest of fine motor skills, and one promising hypothesis is that the well-documented motor challenges many autistic people face play an important role.
In a remarkable study published in 2008, Morton Gernsbacher and colleagues showed that “minimally fluent” autistic two- to eighteen-year-olds could be distinguished from “highly fluent” autistic children on the basis of their motor abilities as infants and toddlers. Gernsbacher and her colleagues also pointed out that other scientists have shown that motor skills can be better predictors of preschool speech fluency than the usual social suspects, like joint attention. I don’t work in this particular area, but I think the role of motor differences in autism is one of the most exciting and promising directions for autism science (for examples, see here and here).
Of course, I also think we need to take seriously what autistic people have written about their motor challenges. Many autistic people—both speaking and nonspeaking people—have described a disconnect between what they would like their bodies to do and what their bodies actually do, and they have reported on the extraordinary effort it takes for them to produce speech. It seems to me we ought to provide them with, and do everything we can to support their efforts to learn, alternatives to speech.
TPGA: Why do you think so many non-speaking people continue to be given speech therapy, instead of being provided with AAC systems and support once it becomes evident that they have a communication disability?
Dr. Jaswal: This is such an important question. I think it reflects a few entrenched assumptions. First, I think there is an ableist assumption that speech is superior to other forms of communication. To folks who can communicate effectively using speech, speaking can seem “natural” and therefore “desirable.” It can seem like something that all humans should do and should be able to do.
You can see this in the way speech is emphasized in early intervention by some autism scientists: “Perhaps the greatest goal of early intervention for children with autism is to gain functional spoken language by entry into school at age five years,” and “Acquiring spoken language before age five has been heralded as the single most important achievement leading to the best social outcomes of children with autism.”
To be fair, I think there’s a real concern that kids and adults who don’t speak will be marginalized, stigmatized, and dehumanized (which is absolutely true), that they won’t have access to educational, social, employment, and community opportunities (also absolutely true). The “easy” solution for everyone but nonspeaking people is to insist that they speak.
Second, I think that many people assume that speech and language are the same thing. They are not. Language is the representation of concepts and categories, and speech is one way to communicate about them.
Third and relatedly, I think some people assume that someone who does not speak does not think. Again, this is obviously wrong—some people who do not speak are lauded for their intellect, including the late theoretical physicist Stephen Hawking. But of course to be able to show what they know, they have to be provided with and supported to learn alternative ways of communicating that are effective for them.
TPGA: What do we know about assessing literacy and receptive language in people who don’t currently have reliable expressive communication in a language?
Dr. Jaswal: We know very little. Many standardized assessments require a verbal response, which clearly is not appropriate for nonspeaking people. And even if the assessments do not require a verbal response, they require a motor response that can prevent nonspeaking autistic people from being able to show what they know.
Cognitive scientists refer to this as the performance-competence distinction: People may not be able to show what they know because of the way their ability is assessed (i.e., because of performance limitations), not because they lack the ability (i.e., competence). If I tested your ability to play tennis the day after you’d broken an arm, it wouldn’t matter how good a tennis player you were—you’d be terrible.
Science is all about discovering the non-obvious. Over the past 30 or 40 years in developmental psychology, for example, ingenious studies have shown that infants are much more competent than they appear—they know, for example, that 1+1=2, and they keep track of who has been kind and who has been mean. Sadly, the ingenuity and open-mindedness that made these kinds of studies about infants’ competence possible have not typically been applied to understanding competence in autistic children and adults—particularly in nonspeaking autistic folks.
There are some fascinating recent efforts that may help to shed light on issues related to literacy and receptive language in nonspeaking people. Alexandra Woolgar, a neuroscientist at the University of Cambridge, is investigating whether nonspeaking autistic people show a signature brain wave pattern that is associated with language comprehension. And Yoram Bonneh, a vision scientist at Bar-Ilan University, and his group have reported preliminary findings that some nonspeaking people show signs of literacy when they are tested using eyetracking methods, but not when they are required to point at pictures.
TPGA: Are we coming any closer to consistent strategies for identifying which types of AAC approaches can work for specific users? Because speakers with communication disabilities are often only given one option (or whichever one their SLP is trained in), and if that doesn’t work for them they are out of luck.
Dr. Jaswal: I wish I could say that we were closer to having those kinds of strategies. Wouldn’t it be great not to have to use trial and error to figure out what approaches work best for which people at what points in their lives? Unfortunately, we’re not there yet. But this is an active area of research, and I know scientists and practitioners are working on this question.
A small consolation, perhaps, is that I think we have finally gotten to a point where it is well-accepted that there should not be any prerequisites to AAC. That said, I have met nonspeaking autistic kids who were not even evaluated by their school district for AAC until they were in late elementary school (and then only at their parents’ insistence), presumably because of assumptions that they were not “ready” or that more speech therapy was the solution. So there is obviously much work to be done.
TPGA: What’s known about *why* and *how* communicate education and support methods suitable for people with severe apraxia come with an influence/subversion risk? What’s known about effective and ineffective methods for mitigating those risks? Do we have evidence that it matters whether or not direct physical contact is involved?
Dr. Jaswal: Let me start by saying that all kinds of communication involve influence. How you phrased your question has influenced what I’m thinking about and how I’m responding; conversational partners influence each other by the kinds of signals they give (e.g., nodding their head or frowning); and so on. So influence is a natural, common, and important part of communication.
But your question of course is about undue influence—influence that leads someone to express something that does not reflect what they want to express. Can this happen when someone is assisting a speller to communicate? Absolutely. Do I think it’s unique to this population? No, people routinely say things that they think others want to hear, or are pressured into making claims they would not make on their own.
Still, I think it’s important to consider the possibility that nonspeaking people are especially susceptible to influence. I don’t know of any research on this, but here’s a theory. By virtue of being autistic and not having a language-based way to communicate, nonspeaking autistic people are not given nearly the level of autonomy (or opportunities to develop autonomy) that most non-autistic people are. They are told what to do, when to do it, and how to do it. They are praised for doing things people tell them to do and reprimanded for deviating. When they use the means they have available to object to something (e.g., by pushing away a food that causes sensory distress), their objections may be ignored (see here for a truly awful example).
It’s not difficult for me to see how this kind of experience, day-in and day-out, could lead someone to become compliant and highly attuned to what other people want them to do. Which is kind of ironic because autistic people are traditionally not thought to care much about pleasing other people.
In terms of ways to mitigate the risk of undue influence in assisted autistic communication, practitioners and spellers have shared several strategies. Ideally, you’d want a speller to object if an assistant led them to express something they did not intend. So one long-term strategy would be cultivating self-advocacy skills throughout development. This would entail, for example, respecting an individual’s protests where possible rather than insisting on compliance.
A more immediate strategy is to confirm with the speller that they intended to express whatever it is they spelled. They could be asked to rephrase a response or to offer an example. When sensitive information is disclosed, the stakes are obviously higher. But if a speller does share this kind of information, you’d obviously want to confirm that it was intended, you’d want to give the speller the opportunity to disclose the information when assisted by a different communication and regulation partner, and you’d want to seek out corroborating or converging evidence where possible and relevant. These strategies are the same that would be used with speaking people under these kinds of circumstances.
I think the elephant in the room here concerns false accusations of abuse made by nonspeaking autistic people through assisted forms of communication. There have been such cases—just as there have been false accusations of abuse made by non-autistic people through speech. But there have also been corroborated cases (see here). It seems to me that the same kinds of strategies described above that can be used to investigate accusations made through speech should be used to investigate accusations made through assisted forms of communication.
Disabled people are much more likely to suffer abuse than non-disabled people, and nonspeaking people are especially vulnerable to abuse because most of them have no way to communicate about it. Those who would deny people access to their most effective method of communication because of concerns about the potential for false accusations should, as Rua Williams recently wrote, “ask [themselves] why a false accusation is more harmful than the ability to accuse.”
Finally, the best way to mitigate the risk of undue influence is to help a speller develop the skills to be able to type independently. That is the goal of most of the spellers I know.
TPGA: What, if anything, do we know about how to interpret conflicts between what someone says verbally and what someone types? Eg: If someone says “no no no” verbally as they type “don’t pay attention to that, I don’t mean it,” how do we know which reflects their actual perspective, as in which one is unintentional vs. intentional?
Dr. Jaswal: Unfortunately, I don’t think there’s going to be a way to resolve these kinds of discrepancies that can apply to all people across all circumstances. But I’ll share one example from a nonspeaking young adult I know that, I think, makes clear that speech can be an unreliable medium for nonspeaking autistic people.
This fellow says a few words, including “yes.” But at one time, he did not say “no.” I don’t know why. But when he was in high school, a teacher found out that he did not say “no” and insisted that she could teach him. According to his parents, who learned about this debacle later, her approach was to ask him each day for a week whether she could have his lunch. And if he said “yes,” she would take it and he would go without. Of course, he always said “yes,” and of course he did not respond “no” by the end of the week.
So although one might have the intuition that speech is the most accurate indication of someone’s intent, clearly it is not. When there is a conflict between what someone says and what they write, I think asking for clarification, using context, history, and other information will be necessary.
TPGA: Facilitated communication practitioners argue that backwards pressure can overcome apraxic impulsivity and make it possible for someone to intentionally communicate by pointing at letters. Is there any good evidence for or against this theory?
Dr. Jaswal: I don’t know about experimental research on backward pressure and facilitated communication. I will say that nonspeaking (and speaking) autistic people have described difficulties feeling their bodies in space and controlling their movements. They have explained that pressure or resistance can help. We should take their testimony seriously. But for quantitative studies about this issue, someone else will have to weigh in.
TPGA: Can you talk about how eye tracking is understood as evidence of authorship rather than of attention?
Dr. Jaswal: Where someone is looking can be a pretty good (though by no means perfect) indication of what they are attending to. And, depending on the context, visual attention toward a particular object can also serve as an indication of someone’s intention toward that object. For example, sighted people tend to look at things before pointing to them, picking them up, or interacting with them. The reason is because, as cognitive scientists have shown, visual information helps guide their movements toward them.
In our eyetracking study, participants looked at most letters well before pointing to them. We would not have expected participants to consistently look at letters before making contact with them unless they were intending to point to them. Using these data, along with the speed, accuracy, and patterns in their response times, we argued that participants demonstrated “communicative agency”: They looked at and pointed to letters they selected themselves, not letters that were selected for them by someone else.
TPGA: Are you aware of any labs that are working on replicating your eye tracking study?
Dr. Jaswal: I am not aware of anyone who is working on replicating our study at the moment. Frankly and for the reasons we discussed earlier, some folks are never going to believe that nonspeaking autistic people have thoughts to communicate about, let alone that some of them have learned to communicate with assistance. It is at odds with what conventional scientific wisdom about this population is, and I think it’s hard for people who haven’t spent time with nonspeakers in many different contexts and over extended periods of time to wrap their heads around the apparent contradictions.
But I’m hopeful that the eyetracking study at least piques people’s curiosity and opens the door a bit to studying questions in this area. As new approaches, perspectives, technologies, and data become available (and as autistic people are finally included in the research process), we have to be willing to reconsider some/many/most beliefs about autism that have become entrenched over the last 75 years.
TPGA: Can you talk about any future work in this area—work you’re planning to do, or work you think would be good for other people to do?
Dr. Jaswal: Sure! My group continues to collaborate with nonspeaking people, their families, and folks who support them, working on projects related to assisted communication. You can learn about some of this work at my lab’s website. But briefly, we recently started a project with engineering colleagues at the University of Calgary to investigate the potential of augmented reality to provide nonspeakers with communication and educational opportunities. Another project in this space is investigating questions about literacy in nonspeaking folks who communicate with assistance.
I think there are really important questions to be addressed about the relationship between spellers and the people who assist them. In the case of pointing to letters on a letterboard, the assistant holds the board vertically, yes. But they also provide attentional, emotional, and regulatory support that spellers have explained is essential—that’s why some people refer to the assistant as a “communication and regulation partner.” Some folks who now type independently still benefit greatly from having a communication partner physically present (even if they are, e.g., sitting behind them in the room).
The benefits of being with a trusted other have been studied extensively in nonautistic people by social and affective neuroscientists (including a colleague at UVa named Jim Coan). I’d love to see (and be involved in!) research that seeks to understand and quantify the support that the communication and regulation partner provides to the person they are assisting to communicate.