Who’s Behind “Who Decides the Autism Science Agenda?”
This week’s post is our response to news story published last week by the prestigious journal Nature. We’ve received several emails about this article from concerned readers.
The news story, entitled Who Decides the Autism Science Agenda?, makes no explicit mention of facilitated communication (FC) or Rapid Prompting Method (RPM) or Spelling to Communicate (S2C). However, it makes a number of FC-friendly claims, uses quotes that are extracted from two facilitated individuals, and showcases an image of one of them:
The story’s author, Mexico City-based researcher-reporter Emiliano Rodriguez Mega, appears to base much of his piece on statements associated with a group called “Global Autistic Task Force on Autism Research” (GATFAR), founded in 2022. This group, as their website states, emerged “as a reaction to the publication of a report made by the Lancet Commission on the future of care and clinical research in autism.” In an open letter in response to this report, GATFAR objects to the term “profound autism”, the focus on behavioral interventions, the focus on “randomized control trials,” and the exclusion of “more recent, promising approaches.” They don’t say what these more recent, promising approaches are.
As portrayed in Mega’s piece in Nature, GATFAR, views the academic and clinical research community as anti-autism, anti-neurodiverse, and wrongly focused on “suppressing autistic traits and adopting neurotypical behaviours, rather than developing services and programmes to support autistic people.” Mega, like GATFAR, remains vague about what these services and programs might include.
But there are enough clues out there for an educated guess.
One set of clues is found in the list of supporters on the GATFAR’s website, which include a number of entities who support FC/S2C/RPM. Other clues are found in statements that appear in both GATFAR’s open letter and Mega’s Nature article: statements that echo those made by FC advocates. These include claims that researchers are biased against autistic/neurodiverse people because they:
use the term “profound autism”
characterize autistic people as “lack[ing] the uniquely human ability of sharing emotions, experiences and activities,” as “shut down from the outside world,” and as “rigid”.
But demonizing these linguistic acts amounts to denying the existence of actual autism as currently defined by all the standard diagnostic tools.
Consider “profound autism.” What used to be called “autism” is now more precisely called “autism spectrum disorder”: a reflection of the consensus that autism is a spectrum of gradations in the frequency and intensity of autistic traits. So if at one end of the spectrum there’s “mild autism”, how are we supposed to refer to the autism at the other end? If not “profound” then “severe”? “Extreme”? “Intense”? But those who object to “profound” don’t like “severe,” “extreme,” or any other linguistic intensifier any better. Indeed, “profound autism” detractors aren’t just objecting to the term; they’re also objecting to the very existence of a form of autism that is diametrically opposite to “mild.”
As for lacking in “sharing emotions, experiences, and activities”, being “shut out from the world,” and being “rigid”, these are direct reflections of the core traits of autism as defined by both the DSM (the Diagnostic and Statistical Manual of Mental Disorders) and the ICD (International Classification of Diseases)—the two standard references on the diagnostic criteria autism. These criteria include deficits in social reciprocity and a tendency to rigid, repetitive behaviors and narrow, all-consuming interests. Without these deficits, an autism diagnosis does not apply.
So to say that words like “profound”, “deficits in sharing”, “shut off”, and “rigid” should not describe autistic people is to deny the very existence of autism as standardly defined.
But denying the existence of autism as standardly defined is an essential part of belief in FC. FCed individuals, most of them non-to-minimally speaking, tend to be those diagnosed with profound/severe autism. In accordance with the diagnostic definitions and the scientific consensus that autism is a spectrum disorder, this means that FCed individuals tend to have profound (or severe or extreme) deficits in sharing emotions, experiences, and activities, to be profoundly (or severely or extremely) shut out from the world—i.e., aloof from the activities and interactions around them—and to be profoundly (or severely or extremely) rigid. And causally connected to all of these traits are profoundly (or severely or extremely) limited language skills.
These last four factors, in turn, call into question the validity of the messages that are facilitated out of these individuals. That’s because these messages invariably show a desire to share emotions and experiences, a desire to connect with the world, a lack of rigid fixations, and high-level language skills. Here, for example, is a message extracted via a variant of FC known as Spelling to Communicate, broadcast on the movie Spellers:
I lived in silence until last month. Other than a finite number of my family members most people thought I was dumb. I hated being talked to like a baby now I’m going to change the reality for myself and others.
In willing away profound autism and its core social deficits and rigidities, along with the resulting language limitations, both GATFAR’s letter and Mega’s article help further the belief that messages like this one are generated by the people being facilitated rather than by their facilitators.
But Nature’s endorsement of FC/S2C/RPM via Mega’s article goes much further than this.
First, there is the above image of Rachel Kripke-Ludwig extending a finger toward a letter board while a facilitator holds the board in the air. A video, Rachel Tells It All, confirms her FC use.
Second, there are quotes from Kripke-Ludwig and a second FCed individual, Payam, (see video here) promoting the idea that FCed individuals are profoundly gifted, not profoundly low functioning. Reinforcing this is Payam’s mother, Parisa Khosravi, who tells people to “presume competence and listen to our non-speakers rather than assume intellectual disability.”
“Presume competence”, as we’ve noted frequently here on this website, is an injunction commonly made by FC proponents to rule out validity testing of FCed messages. But empirical and ethical considerations tell us that such testing is essential. That’s because, whether they hold onto the client (as in “traditional” touch-based FC) or hold onto the letter board (as in variants such as RPM and S2C), facilitators exert (often inadvertent) control exert over the typing process, thus directing the typed-out messages.
Thus, far from being anti-autistic, validating authorship through single- or double-blind message passing tests (e.g., where the facilitator is not aware of test protocols) is how we ensure the words being attributed to the FCed individuals are their own and protect them against potential violations of their fundamental communication rights.
Given its support for FC, there are a few other ironies in Mega’s piece.
Mega claims that most autism research is focused on “suppressing autistic traits” and inducing autistic individuals to “adopt[] neurotypical behaviours.” But facilitated communication, in presenting the communications of a non-autistic person as those of the autistic person, suppresses autistic traits more fundamentally and drastically than any other intervention.
Mega advocates for participatory research and “prioritize[ing] the views of autistic people”, including “whether research questions are relevant, recruitment protocols respectful and methods scientifically sound” But FC, in substituting the views of autistic people with the views of their non-autistic facilitators, fundamentally undermines participatory research.
Mega mentions insufficient attention to “debunking pseudoscientific treatments”. But FC is one of the most egregious pseudoscientific interventions in autism, with scores of studies debunking it.
Disappointingly, Mega’s article joins a spate of recent articles that perpetuate the notion that FC is a legitimate form of assisted communication and that there is no such thing as profound/severe/low-functioning autism.
A truly pro-autism, pro-neurodiverse position would recognize the realities of profound autism and support access to both legitimate AAC and message authorship protections. Autistic individuals should be celebrated for who they are and not who their facilitators wish them to be.
We conclude by noting that the Nature article also contained some misinformation about the origins and use of Applied Behavior Analysis (ABA). While these go beyond the scope of a website focused on Facilitated Communication (FC), we have listed some resources below for those who wish to explore this further.
ABA REFERENCES:
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968. 1-91
Green, G. (2018). Consumer corner: Identifying applied behavior analysis Interventions. Science in Autism Treatment, 15(2), 6.
Morris, E. K., Altus, D. E., & Smith, N. G. (2013). A study in the founding of applied behavior analysis through its publications. The Behavior Analyst, 36(1), 73–107. https://doi.org/10.1007/ BF03392293
Leaf, J. B., Cihon, J. H., Leaf, R., McEachin, J., Liu, N., Russell, N., Unumb, L., Shapiro, S., & Khosrowshahi, D. (2022). Concerns About ABA-Based Intervention: An Evaluation and Recommendations. Journal of autism and developmental disorders, 52(6), 2838–2853. https://doi.org/10.1007/s10803-021-05137-y