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#actuallyautistic voices

Response to ASHA Statement

In 2018, the American Speech-Language-Hearing Association released a position statement discrediting the methods our students currently successfully use to develop communication skills. This position, from an organization with an abundance of power, has major implications for the communication rights of so many individuals.


As the Executive Director of Reach Every Voice, I joined with hundreds of others (that I know of) to write to ASHA to protest this statement. Here is my letter in its entirety.


ASHA statement

June 21, 2018

American Speech-Language-Hearing Association

Attn : Board of Directors

2200 Research Boulevard

Rockville, MD 20850-3289


My name is Lisa Mihalich Quinn, and I am a special education teacher. For six years I taught students in a program in our county dedicated to supporting AAC users grades 3-5 in inclusive environments. My students used DynaVoxes, PRC devices, and iPads in their communication. They accessed them through direct selection, switch activation, joystick use, partner assisted scanning, and eye gaze. Each of these students began their AAC journey in a largely self-contained environment where explicit teaching of the device, modeling of language development, and modeling selection of items was the norm. Students were routinely prompted while learning how to use their devices. Students frequently had the support of 1:1 classroom aides to assist with devices and modeling language use in addition to materials management, academic support, behavior management, and/or activities of daily living. Not one of these students has had their communication systems or methodologies called into question by ASHA. The world viewed and celebrated our program as providing what the students needed to be successful.


When this program closed, I accepted a position case managing in a Facilitated Communication pilot program in a local school. I was skeptical. I knew the controversy. I also knew that some students I’d met, most of whom had autism spectrum disorders, were capable of more than they were demonstrating either with speech or with a sequenced device. When I took the position, I researched recommended practices for eliminating factors that could continue to inspire doubt.


I learned to support each of my students to be able to act as a communication partner in grade-level classes or in a resource setting, acting as a backup to their regular communication partners. Students worked with multiple facilitators in their classes and around the school. We kept portfolios of student output to monitor for consistency across multiple facilitators and documented our prompting, each week taking time to work toward a new level of independence. Students demonstrated knowledge of grade-level content in minimally modified assignments, often meeting and surpassing the grades of their same-age peers. When the students entered middle school, attending 90-minute classes was very much a struggle. Midway through their 6th grade year, most students were able to do this with only one break mid-way through class, similar to all students in the classes. We received ongoing consultation and support from experts in the field. Our students thrived.


Much like in the AAC program in which I’d previously worked, we explicitly taught device use, modeled proper language and spelling, and prompted students to maintain attention to their devices. 1:1 classroom aides assisted with devices, materials management, academic support, behavior management and/or activities of daily living. None of this differed significantly from my past program. When any student can be successful in the least restrictive environment given proper supports, we provide them. The need for this type of human assistance does not negate a person’s communication.

In addition to building communication skills at school, most students continued to develop skills at home with a private practitioner. Some of our students also worked with professionals who were trained in Rapid Prompting Method. As I learned more about RPM and observed the gains my students were making with their motor skills, I realized the best way to be educated was to learn RPM directly from its creator.


RPM is, at its core, just good teaching. As an educator in a classroom teaching a guided reading group, I assess my students’ abilities and provide appropriate levels of scaffolding and support for them to demonstrate their knowledge. I may provide choices or sentence frames. I may provide word banks or teacher models. I may conference with them on their written output to help them shape their writing. No one doubts these evidence-based educational practices, yet if viewed through the lens of FC/RPM critics, all these things would be seen as influencing my students’ communication.

When I learned to drive a stick shift car, truly a complex motor action, I understood the steps I needed to take to make the car move. Clutch in, brake up. Off the clutch, push the gas. All the steps made sense in my head. They made sense when sitting in the driver’s seat, but making the car move was a different story. As I learned, I required someone to break this action down into discrete steps, to sit next to me and encourage me, to help me maintain attention to all the little things that went into driving. No one doubted that I was driving; I just needed someone to provide prompts and support. Over time those prompts faded and I became a more skilled driver. We need to view RPM/FC as drivers’ education and communication partners as someone coaching in the passenger seat.


Over the years, I have been a communication partner to more than twenty individuals who use FC or RPM. I have watched students progress from using physical support at their wrists to responding independently with only a person next to them. I have held a board when a student, listening to conversation in Korean - a language I do not speak or understand - responded appropriately to that conversation in English. Each of these individuals has experienced significant gains in their lives from being allowed access to FC/RPM. Significant aggressive and self-injurious behaviors have decreased or disappeared. Students with clinical anxiety or depression have been able to receive needed treatment. A student suffering after the death of his father was able to attend and participate in grief counseling. Students are receiving engaging, challenging, and appropriate education.


Your Ad Hoc Committee truly needs to consider input and evidence from actual users of FC/RPM and from ASHA members who have experience in using these practices. The individuals who comprise this committee have already formed opinions about these practices as are evidenced by their histories of personal attacks and disparaging remarks not only about the practices themselves but also about individuals who use them. If we are to be curious and continue learning, it is imperative that we examine all evidence with open minds.

ASHA needs to withdraw these proposed statements and apologize for the actions of this biased Ad Hoc Committee.


Sincerely,


Lisa Mihalich Quinn, M.A., M.Ed


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