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A voice for all: Why I’m fighting to help Autistic students access the form of communication that works best for them.

This March, I filed a complaint with the Department of Justice on behalf of five non-speaking autistic students in Arlington, VA who use letter-boards to communicate (or, as one of these students has dubbed them, the “Arlington Five”). These students are only a few of the many non-speaking autistic people and families who have approached ASAN to complain that school administrators – especially at schools focused on behavioral approaches to autism – have been refusing to authorize the supports that would enable them to communicate without speaking.

Fighting for communication rights shouldn’t be controversial. But we’ve already encountered resistance from school administrators, especially promoters of disproven “behavior”-based approaches to communication. These administrators would apparently prefer to rely on outdated, disproven “speech-only” approaches to language than use a method that works but doesn’t fit their model. These approaches echo movements to stamp out sign language in Deaf children and force them to communicate orally – movements that researchers and disability advocates now recognize as discredited and abusive. It’s time to call this attitude what it is: unacceptable, inhumane, and illegal.

Denying autistic students effective communication

A young Asian man, a young white woman, and a young Black man are standing next to a white woman in her forties. They are in a hotel hallway. Huan, Emma, and A.S. stand next to speech-language pathologist Elizabeth Vosseler at the TASH conference. Photo used with permission of all subjects.

The Americans with Disabilities Act requires that schools, like many other public services, provide “effective communication” for their students with disabilities. This can include providing a sign-language interpreter for Deaf students, using sound amplification or CART technology for hard-of-hearing students, and providing materials in Braille for blind students. But it also includes providing augmentative and alternative communication supports (AAC) for students with motor and developmental disabilities – supports like iPad apps, speech-generating devices, letter-boards, and symbol systems.

Many non-speaking autistic students have a hard time getting their mouths to make the sounds that are required for speech. This means that AAC is as necessary to them as a sign-language interpreter is for a Deaf student (some autistic people may need interpreters as well – including sign-language interpreters and “speech-to-speech” interpreters for those who speak, but not in a way that is easily understood by others). Without these supports, their ability to participate in class and demonstrate what they know is severely limited.

But the administrators of schools focused on serving autistic students often believe they are entitled to force students to communicate in the particular way that the school wants them to, despite the law. Arlington Public Schools administrators, for example, offered some members of the Arlington Five a picture-board with just a few pre-selected words or phrases. Students could make simple requests using the board (as long as those requests were for something that happened to be on the board), but couldn’t demonstrate their knowledge in academic subjects.

Arlington Public Schools has not yet contacted us about our complaint. But in other situations when I’ve told schools that it was illegal to limit students only to the communication methods the school wanted to use, I’ve encountered a stunning ignorance of the ADA. For example, earlier this year I attended an IEP meeting for another teenaged non-speaking autistic student (not one of the Arlington Five) who attends Primetime for Kids in Rockland, NY, a school that uses “Applied Behavior Analysis, with a specific focus on Verbal Behavior.” At the meeting, a senior administrator of the school not only refused to accommodate the student’s preferred form of communication, but confirmed, on tape, that they also would refuse to accommodate a Deaf Autistic student who used American Sign Language. Later, as is noted in the GoFundMe page that the family’s advocate has set up to cover evaluation expenses, the school sent a letter to the student saying that he was not welcome back for the 2016-2017 school year. So much for the ADA. (The student’s family has filed their own complaint with the Department of Justice.)

“Evidence-based”: You keep using that word, I do not think it means what you think it means.

Both Primetime and Arlington Public Schools administrators have claimed that use of a letter-board or other forms of AAC are not “evidence-based.” But the National Joint Committee for the Communication Needs of People With Severe Disabilities (NJC) – a joint committee of leading experts on communication and developmental disabilities – recently published guidance acknowledging that people with disabilities may “develop unconventional and highly individualized or idiosyncratic means to communicate.” Members of our community may use spelling, signs and gestures, picture-based communication, pointing to symbols or core words, sounds recognizable only to those familiar with them, or an individualized combination of these and other strategies. This makes it impossible for every method of effective communication for people with developmental disabilities to be confirmed by peer-reviewed studies. In fact, there are almost no randomized controlled studies examining any communication intervention for autistic individuals older than age 5 who have not already learned to speak fluently – people like the Arlington Five or the student at PrimeTime.

This is a common challenge in education, medicine, and psychology: very rarely will you find an individual whose situation exactly matches a published study. That’s why evidence-based practice usually refers to use of the “best evidence” available – in this case, a combination of research evidence, understanding of how learning and communication happens, and familiarity with the individual in question.

The “best evidence” unquestionably supports the Arlington Five and others like them. First, we know that it’s possible in general for children to learn to communicate through spelling – in fact, it’s a core expectation in education. We know that spelling is a common method of alternative communication for individuals who, like my clients, have motor difficulties that make it difficult or impossible to speak – including stroke survivors and those with ALS such as Stephen Hawking.

We also know that these individual students are communicating independently: the complaint I filed with the Department of Justice, which is linked to above, includes links to videos showing that nobody is guiding the students’ hands or moving the board so that the right letters are under their fingers. Some of the students, as shown in the videos, even speak the letters out loud as they point. If these students were found to be basing their movements entirely on microscopic cues from their supporters – especially considering that they have been diagnosed with a disability that typically makes it far more difficult to follow eye gaze and track body language – it would be far more “miraculous” than simply teaching a kid how to spell.

Most tellingly, even school administrators who question the method still advocate other methods of communication that also involve pointing – such as pointing to one of three multiple-choice options or pointing to printed pictures. If pointing to a picture of a cookie in order to request a snack is supposedly “evidence-based,” why isn’t pointing to letters in order to spell? Many other AAC methods also involve either pointing or touching: individuals may touch core words or symbols on a communication device in order to form sentences. Others, like partner-assisted scanning techniques often used by people with certain physical disabilities, require a facilitator to read out letters or communication options and read a communicator’s body language to determine which option they choose. And, like people without disabilities, autistic individuals who use a variety of communication methods may point at or touch objects in order to refer to them in the course of communication.

On the other hand, the “best evidence” weighs heavily against so-called “verbal behavior” therapies, or other attempts to use Applied Behavior Analysis (ABA) to teach language.This may come as a surprise to a lot of people who believe that ABA is not only evidence-based, but the only evidence-based intervention for autism. But to the extent that behavioral interventions work at all, they only work on behaviors, not language.

In fact, mainstream developmental psychologists have known for almost 50 years that “behavior”-based approaches are ineffective at teaching language.

In the 20th Century, early behaviorists like B.F. Skinner (whose theories Primetime for Kids cites as the foundation for their “verbal behavior” approach) thought that children learned language the same way rats learned to push levers – through contingent rewards or consequences. According to this theory, children learned language because parents rewarded them for speaking – for example, by giving them the things they requested or by praising them for using words.

Famed linguist Noam Chomsky wrote a scathing criticism of this theory in 1959, over 50 years ago, in which he called Skinner’s theory on language “a reductio ad absurdum of behaviorist assumptions.” That review was only the first of a number of assaults on the theory. By 2004, when I graduated college with a focus in the psychology of language, it was impossible to get through an introductory-level psychology class without learning that behavioral techniques are not a useful way to teach language to children. The vast body of research on language since the late 1950s has shown us that language – like all communication – is an instinct, not a behavior that we need to be trained to perform. Human children typically learn language whether they’re rewarded for it or not.

That’s why the Department of Education’s What Works Clearinghouse, after exhaustive review of the research, found that Applied Behavior Analysis – which encompasses Verbal Behavioral Therapy – has “no discernible effects” on communication or language competency in autistic children. In fact, they found that if anything, these interventions have a small but negative effect on language competency.

As any parent who has tried to train their child to say “please” will tell you, behavioral approaches can be used to train people to say specific things. Children can learn pretty quickly that they won’t get a cookie if they don’t say “please” when they ask. Accordingly, “verbal behavior” interventions often focus on training child to say specific, scripted sentences in order to access desired objects: “I would like juice, please.” “I would like to go to the bathroom, please.” “I would like the toy truck, please.” In particularly bad cases, verbal behavioral therapy merely teaches students to say what they think they are supposed to say – undermining the entire purpose of communication.

But teaching a child to repeat scripted requests isn’t teaching functional language, or even teaching functional communication in general. It doesn’t teach students the skills they need to learn in order to express their knowledge, feelings, goals, likes, or dislikes. You wouldn’t expect a typically-developing child to make make requests in complete sentences before they were allowed to “graduate” to expressions of emotion, asking questions, or making statements about the world. So why would you expect this of an autistic language learner?

Letter-boards and other forms of AAC provide the necessary flexibility and generalizability that autistic people may need in order to communicate beyond a limited set of scripted requests. Signing, arranging language-based symbols, or using a communication device programmed with core vocabulary and other user-selected words all can help users not only to ask for more juice, but communicate emotions and preferences, ask questions, greet loved ones, and demonstrate knowledge. Although not everyone will be able to use any one method, to deprive people of the opportunity to use a method that works for them is simply unconscionable.

The worst part is, we’ve seen this before.

It’s not just that we have no evidence that “verbal behavior” therapy works. Because similar types of interventions have historically been used in deaf children, we actually have evidence that it hurts. Countless deaf children have been effectively deprived of access to language because so-called experts have told their parents to discourage use of sign language to communicate and to focus instead on intensive, drill-based training to teach children to lip-read or understand the signals from a cochlear implant – placing them “at great risk for later cognitive, learning, language, and reading challenges.”

Because communication is a powerful instinct, many of these these children nevertheless often find their own ways to communicate through signs recognized by the people they knew best – even when their attempts to sign are actively discouraged and punished. In some cases, this even led to the development of new sign languages. Experts now agree that teaching deaf children sign language, or a combination of oral speech and sign language, is better than expecting deaf children to communicate orally. Now, however, behavior-focused experts in autism education are repeating this horrifying history.

Communication is a human right.

In the guidance that it published last month, the National Joint Committee for the Communication Needs of People With Severe Disabilities affirmed that communication is “both a basic need and a basic right of all human beings.” The Board of TASH, a nationwide disability advocacy organization that is also a member of the National Joint Committee, also affirmed in a draft statement that “The right to communicate is both a basic human right and the means by which all other rights are realized. All people communicate, and are presumed to have an active interest in communicating their decisions and choices.”

All means all. Communication should not be solely the right of those who communicate the “right” way by some arbitrary standard. Although the growing variety of augmentative communication strategies and technologies for autistic people is exciting, we cannot achieve the full promise of these innovations if people do not have the right to use whichever one works best for them, and to do so immediately, rather than having to wait for research on each new tool to filter through peer review.

Luckily, I’m very confident that the law, and history, are both on our side. It’s time for those who claim to serve our kids to get on the right side as well.

ASAN’s representation of the Arlington Five is part of its Communication Rights Initiative, which aims to promote communication rights for all autistic individuals regardless of their form of communication. To donate, click here

This entry was posted in Autistic Community and Allies, Blog, Changing Perceptions, Disability Rights and Neurodiversity, Inclusive Education and College, Policy, Self Advocacy and Representation and tagged , , , , , , , , , . Bookmark the permalink.
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