Autistic Rights Do Not Depend on Reading or Writing Ability

There have long been reports of minimally verbal and nonverbal autistic people precipitously displaying advanced reading, writing, and other skills not previously evident. Nearly invariably, these reports are the product of different forms of facilitated “co-communication” wherein the heretofore nonverbal or minimally verbal person communicates with the assistance of a communication facilitator who guides the individual’s hands over an alphabet board, keyboard, or electronic device used to augment verbal communication. In the overwhelming majority of these cases, it turns out that the “co-communicator” is either partially contributing to or is the actual (sole) author of the communication. Candidly, I worry about the implications of implicitly presuming that autistic people have an inherent ability to read, write, or do math that can somehow be “unlocked” via supported or facilitated communication.

To be sure, every autistic individual I have met does have abilities that are not readily apparent and may not be evident in traditional testing or communication settings. Examples of this are described in a recent book discussing “hidden brilliance” in autism[1] co-authored by Lynn Koegel of Stanford Medical School. On the other hand, reasonable procedures employed to teach device use wherein a co-communicator supports an autistic person when using an alphabet board to spell words or during the acquisition phase of some forms of electronic-assisted communication can inadvertently lead to a co-communicator unconsciously influencing the messages—in effect becoming the autistic individual’s “pseudo” voice. Worse, a “neurotypical” facilitator could then project their own performance expectations to read, write, or complete math problems on an autistic person.

Often, these “typical” expectations that autistic people can—and should—demonstrate advanced skills in reading, writing, and math can displace reasonable, common-sense procedures and safeguards to ensure that messages are in fact being authored by the autistic individual rather than a facilitator. The pressure to “unlock” autistic abilities via supported co-communication yields important insights into how neurotypical values are unconsciously imposed on autistic people.

Importantly, there is an emerging literature—and policy recommendations—arguing that autism assessments and “interventions” too often prioritize “neurotypical” values and goals without adequately considering autistic peoples’ values and perspectives.[2] Pushing for demonstrations of “hidden” abilities in reading, writing, and math that neurotypical people prioritize is a striking example: Does the inherent “worth” or “value” of a minimally or nonverbal autistic person in any way, shape, or form change if a co-communicator suddenly “discovers” heretofore “hidden” skills or abilities not previously shown? What happens to an autistic person’s “value” when it becomes clear that the “abilities” are actually a product of co-communicator influence or unconscious bias and do not originate from the autistic individual? Does this then diminish the societal “worth” of the autistic person when, in fact, their abilities and identity are totally unchanged? I can think of nothing more chauvinistic or dehumanizing than stealing an autistic person’s voice in order to demonstrate abilities that are prioritized by neurotypical society.

Co-communicator bias in message authorship also has the potential to have an adverse impact on the ability of autistic people to communicate their priorities and preferences to family members, teachers, and community members. This is particularly troubling at a time when autistic people are finally being invited to contribute to discussions and policy decisions on autonomy, research priorities, and education preferences.[3] For example, researchers now routinely include autistic people on advisory committees to ensure autistic perspectives are considered in study design and implementation. It is absolutely crucial that this input reflects authentic autistic voices. Simple common-sense procedures should be utilized to ensure that co-communicators are not unconsciously influencing or authoring these messages. It is absolutely essential that the goal of this process is to validate rather than discredit message content and fairly ensure that autistic message authorship is protected. That is, when a co-communicator “facilitates,” authentic questions should exclusively be directed to and answered by the autistic communicator. In practice, previous writings (so it is inarguable that the autistic person has demonstrated knowledge of topics and contents) can be discussed with a communication partner who is not the facilitator. This partner could review a list of recommendations from an autistic person to the research team, write a query about one or more of the recommendations, and then show these to the autistic person, but not the facilitator, so the autistic person can answer with their own voice. The co-communicator can continue to facilitate if that is what the autistic person wishes, but safeguards should be included during the interactions. There are many variations on this procedure and all co-communicators should welcome opportunities to ensure that autistic people’s messages are free from unconscious bias.

Autistic individuals have fundamental human rights, including a right to authentic communication regardless of math, reading, or writing ability, and should not be coerced to "perform" in order to meet “neurotypical” expectations. Facilitated or any other co-communication is especially vulnerable to bias, having an adverse impact on protecting these rights.