Quick Facts About Communication Choice
And Why the ASHA Proposals are Both Dangerous and Flawed
- Individuals with disabilities who cannot speak due to various neurological and motor conditions, including autism, are the most vulnerable and isolated members of society. Effective communication is essential to dignity, health, safety, education, inclusion, independence, and self-determination. Non-speaking and unreliably speaking children and adults need access to effective augmentative and alternative communication (AAC) in order to participate and thrive in their lives and communities.
- A small committee within the American Speech-Language-Hearing Association (ASHA) has proposed the organization take steps to prevent some people with disabilities from accessing their preferred and only effective means of communication. On June 1, 2018, an ad hoc committee proposed that ASHA adopt statements condemning two AAC training methodologies that teach individuals with motor-based communication disabilities how to type independently. The proposed ASHA statements are here and here.
- On July 16, 2018, a coalition of 23 national nonprofit civil rights and disability advocacy organizations asked ASHA’s Board of Directors to withdraw the flawed and dangerous proposals. Some disability organizations wrote their own letters as well, including the Autistic Self Advocacy Network and TASH. Hundreds of individuals, many with disabilities, wrote in protest too.
- In the wake of these threats to the human, civil, and legal rights of persons with disabilities, a coalition of individuals with disabilities, their families, and allies organized a grassroots campaign called United for Communication Choice. Through this website, letter-writing campaign, and other efforts, we seek to defend and protect the fundamental rights of children and adults with disabilities to choose their most effective methods of communication. We ask ASHA and others to join us in supporting these fundamental rights.
About Non-Speaking and Unreliably-Speaking Individuals
- There are at least 3 million non-speakers in the United States alone. According to the United States Center for Disease Control, about 3% of children in the U.S. have received a diagnosis of autism (National Center for Health Statistics, 2017). If that 3% prevalence rate were assumed to hold for the entire U.S. population, it would mean there are about 9.5 million autistics in the country. Given that roughly one-third of the autistic population over the age of 5 is non-speaking or minimally-speaking (Anderson et al., 2007), there may be more than 3 million non-speaking or minimally speaking autistics in the U.S. There are many conditions other than autism that can prevent individuals from being able to speak (e.g., Amyotrophic Lateral Sclerosis (ALS), stroke, Parkinson’s), and so the number of non-speaking people in the U.S. likely is considerably higher.
- Many people wrongly assume people who cannot speak are incapable of complex thought and language. ASHA’s proposals imply that non-speakers lack the intelligence to generate the messages they type. But there are no relliable data on the rate of intellectual disability in non-speaking people.
- In fact, all standard assessments of intelligence require the subject to either speak or move parts of their body in a controlled, volitional fashion. Several studies have demonstrated these assessments are inaccurate in measuring the intelligence of most non-speaking or unreliably-speaking individuals.
- There is no anatomical basis for assuming non-speaking individuals are “non-thinking”; speech and language are processed in different parts of the brain. Assuming that an individual with impaired speech has impaired language or lacks the intelligence to produce complex communication is neither appropriate nor “evidence-based.”
- A substantial body of research also indicates that autism is fundamentally characterized by motoric and sensory differences. One recent study found that nearly two-thirds of autistic children have a motor planning disorder called apraxia (Tierney et al., 2015). Non-speaking and unreliably-speaking autistic individuals are generally unable to speak because of motor issues, not cognitive ones.
- None of the diagnoses most commonly associated with an inability to speak necessarily involve cognitive disability. These diagnoses include cerebral palsy, Amyotrophic Lateral Sclerosis (ALS), autism, stroke, deafness, and Parkinson’s disease, none of which in and of themselves involve cognitive disability. It is not clear why people treat those who cannot speak as if they possess significant cognitive disabilities, but our history is replete with examples where such assumptions have been proven wrong. Real life examples immortalized in book, film, and other media can be viewed here (Ghost Boy), here (“At a Glance, A Computer Comes Alive”), here (Mr. Connolly Has ALS), here (The Diving Bell and the Butterfly), and here (explaining the genesis of the concept of “deaf and dumb”).
About Typing and Letterboard Use
- We estimate there are at least 5,000 children and adults in the United States who communicate by typing or by pointing to letters on a letterboard, or are learning to do so. (This rough estimate is based on an informal poll of professionals, listserves, and social media groups.) A variety of training methods, including facilitated communication (FC) and Rapid Prompting Method (RPM), have been developed to support individuals as they learn to communicate by typing or with letterboards.
- The goal of these methodologies is to support users as they learn to type independently. This process can take years; it does not happen overnight. Some videos demonstrating the acquisition of the skill over the course of several years can be seen here. Just as some children who are learning to use a pencil or ride a bike benefit from hands-on support, many individuals who are learning to communicate by typing benefit initially from supports provided by another person. As with all support techniques in education, the goal is always to fade this support as quickly as possible. The amount of time required to do so varies tremendously between individuals, and depends on the nature and extent of their disabilities.
- Why not sign language? Most individuals who seek training in methods to become independent typers are unable to use speech to communicate effectively because they are apraxic, unable to carry out skilled movements and gestures despite having the desire to do so. As a result, sign language—which requires advanced fine motor planning abilities and coordination—is rarely a viable option.
- Why not other forms of AAC? Most non-speaking individuals who are learning to type have tried—usually for years—a variety of other AAC methods, including, for example, PECS, PODD, or iPad/tablet-based variations like Speak for Yourself, LAMP, and Proloquo2Go. Many users of such programs have expressed frustration at the limited vocabulary available to them, especially during the early stages of training. Moreover, these types of AAC require extensive training and customization to enable the user to communicate truly fluently—for instance to compose poetry, tell a made-up joke, take AP Chemistry, or write an op-ed about gerrymandering. Click here for a poignant example of a family’s experience trialing one form of AAC (The New York Times, 7/6/2018).
- Non-speaking individuals and families make the decision to begin learning to type in a thoughtful and deliberate manner, after everything else has failed. Families are not “duped” into trialing AAC teaching methods like FC and RPM. They are aware that the process will be slow and that students will not be transformed overnight into fluent conversationalists. After years of practice, and while also being provided meaningful, age-appropriate academic instruction (often for the first time) and supported by people who presume their competence, many non-speaking people do type beautiful and profound stories, memoirs, and commentary—just as many speaking people do. But the most important outcome is that they develop the ability, over many years of practice which involves fading support, to communicate effectively. This allows them to participate and thrive in their communities, including school, work, and places of worship.
About Support and Independence
- Learning to effectively communicate with any form of AAC is a protracted process requiring the support of another person. Virtually all other forms of AAC are taught with a heavy reliance on prompting, and the use of trained communication partners who model, correct, and otherwise support the AAC learner. See here, here, here, here, here, here, and here for just a few examples.
- Many non-speaking people will require various kinds of support throughout their lives; some prefer that. Most individuals who lack the ability to communicate effectively with speech have other significant neurological and motor impairments. Many will depend on the part- or full-time assistance of another human to engage in employment and other activities of daily living throughout their lives. While many individuals with significant support needs prioritize independence, others have prioritized goals of greater interdependence rather than independence.
About Evidence-Based Practice
- According to ASHA’s definition, “evidence-based practice” draws on three sources: high-quality research evidence, practitioner expertise, and client preferences. ASHA goes on to explain that “[t]he notion that external research evidence somehow ‘trumps’ all other considerations is one of the big myths surrounding evidence based practice.”
- A research base to determine best practices in helping non-speaking people learn to type independently is essential and will take time. The research base on the two methodologies that are the subject of the ASHA proposals is limited and more research is needed. But methodologies that are now well-accepted by some practitioners—including Applied Behavior Analysis (ABA), one common autism intervention approach—once lacked a research base. If no new approaches to teaching AAC were allowed until a research base were established, there would never be innovation in the very young field of AAC. A fiat against new AAC teaching methods (which both FC and RPM are) ignores the fact that new research on, for example, motor and sensory differences in autism may inform the development of more effective AAC teaching approaches. See here for links to some of that research.
- Evidence against a particular teaching methodology should be taken seriously, but so should evidence demonstrating its efficacy. The failure of many individuals to succeed on so-called “message passing tests” is interesting, but message passing tests are not the only kind of evidence available to determine whether people can communicate effectively using a keyboard or letterboard. There is incontrovertible evidence that non-speaking and unreliably-speaking individuals have learned, through painstaking practice with FC or RPM over many years, to communicate independently by typing. To see videos examples of some of these individuals, click here. Before recommending against the use of techniques to teach individuals to communicate effectively—an ability that everyone agrees is a fundamental human right—much more high-quality research evidence, including measures other than message passing tests, is needed.
- An analogy may be helpful: According to a U.S. Department of Education report, ABA has no effect on communication/language competencies, social-emotional development/behavior, and functional abilities in children with disabilities (WWC, 2010). If these measures alone were used to determine the efficacy of ABA, it would not be considered evidence-based practice. Practitioners who use ABA either ignore the finding that ABA has no effect in these domains, or they choose to focus on the one domain where the same report suggests there may be some measurable influence (i.e., tests of cognitive development).
- The participation of people who rely on AAC is fundamental to the development and evaluation of AAC. Indeed, this is the first principle the Rehabilitation Engineering Research Center on Communication Enhancement’s list of six “key principles of AAC.” Several of the other of the principles also emphasize the importance of participation of AAC users. For example, it is essential to take into account their preferences and priorities (#3) and to recognize the “roles communication partners play during interactions” (#4). During the drafting of ASHA’s proposed statements on FC and RPM, no one from the community of typers or letterboard users—the users themselves, professionals, family members—was invited or allowed to participate.
Why ASHA’s Proposed Statements on FC and RPM Matter
- The Americans with Disabilities Act regulations mandate that public entities, including schools, support an individual’s preferred means of communication except in extenuating circumstances. 28 C.F.R. § 35.160. The statements, if finalized, would put thousands of ASHA members and their employers in the awkward and untenable position of deciding whether to comply with federal law or with the contrary guidance of a nonprofit credentialing organization. Click here for more on U.S. law that relates to effective communication for individuals with disabilities.
- The proposed statements perpetuate outdated, paternalistic approaches to disability. People with disabilities have made it clear that they do not want others to dictate the ways that are acceptable for them to interact with the world, which the ASHA statements (if adopted) would do.
- Banning exposure to a method of communication has been tried before; it represents one of the more egregious errors in the history of education. In 1880, the International Conference on the Education of the Deaf adopted a resolution that recommended against the use and teaching of sign language in schools. Out of 144 delegates, only one was Deaf. The resolution resulted in the effective ban on the use of sign language in schools in the United States, a ban that lasted for over 100 years. It wasn’t until 1980 that the International Congress on the Education of the Deaf agreed that “all deaf children have the right to flexible communication in the mode or combination of modes which best meets their individual needs.” For over 100 years, signing Deaf individuals were forced underground, unable to use or be taught sign language in schools.