Open Letter to ASHA by Elizabeth Vosseller

To the Board of Directors:

I am writing to you to ask that you withdraw the proposals from the Ad Hoc committee on FC and RPM.  The members of this committee have a longstanding public record of trying to discredit the use of FC, RPM and other forms of typing or spelling as a form of communication.  A review of their articles, Twitter posts and other public commentary ridiculing nonspeakers makes their bias abundantly clear.

I have been a SLP and ASHA member for 24 years. In my career as a SLP, I have specialized in autism and complex communication disorders through my work at: Children’s National Medical Center in Washington DC;  as a professor and clinical supervisor at The George Washington University – teaching and supervising in both speech-language pathology and later in special education; and as the owner of a private practice, Growing Kids Therapy Center. I currently work exclusively with nonspeaking individuals who spell or type to communicate.

In Speech Pathology 101 we learned that speech and language are two different functions and that if speech is impaired, it does not necessarily mean that language is impaired. Neuroanatomy and physiology teach us that the primary centers of language are Wernicke’s and Broca’s areas and that speech occurs as a complex motor process involving the primary and supplementary motor cortex. Individuals who have childhood apraxia of speech, a neurological speech sound disorder that affects the planning and programming of the motor movements required for speech sound production (ASHA, 2007), may have difficulty producing spoken language without any impairment in language. A growing number of studies indicate a high comorbidity of autism and apraxia, as high as 63.6% (Tierney et al., 2015)–that is, nearly two-thirds of children diagnosed with autism also have apraxia.  

In other explanations of apraxia, ASHA (2007) has further stated, “Individuals with apraxia of speech know what words they want to say, but their brains have difficulty coordinating the muscle movements necessary to say all the sounds in the words. As a result, they may say something completely different or make up words (e.g., “bipem” or “chicken” for “kitchen”). The person may recognize the error and try again—sometimes getting it right, but sometimes saying something else entirely. This situation can become quite frustrating for the person.” Nonspeaking autistics present with patterns consistent with childhood apraxia of speech: difficulty imitating, initiating and inhibiting actions; poor sequencing and coordination of movements; errors in prosody; groping for proper articulatory positioning; better production of automatic speech than novel speech; uncoordinated speech-breath timing; frustration; and limited gains from traditional speech and language intervention.

The earliest documentation of autism by Leo Kanner (1943) and Hans Asperger (1944) both note clumsiness, awkward gait and motor irregularities in many of the autistics they first studied. There is a growing body of research documenting the motor differences in autistics. Focaroli et al. (2016) found that an early predictor of autism in infant siblings of children diagnosed with autism was delays in early motor skills. Researchers at Kennedy Krieger also observed limited fine motor activity, grasping and use of motor for object exploration in these infants (Klaus et al. 2014). In a meta-analysis of 83 studies related to motor and autism, Fournier et al., (2010) concluded that “motor deficits are a potential core feature of ASD” (p.1237).  

Anne Donnellan and Martha Leary’s work over the past twenty years has focused on documenting and describing sensory movement differences in autism. Using first-person accounts and experimental evidence from autism and other well-characterized motor disorders (e.g., Parkinson’s), Leary et al. (1999, as cited in Robledo et al., 2012) define sensory and movement differences as a “difference, interference or shift in the efficient, effective utilization and integration of movement; a disruption in the organization and regulation of perception, action, posture, language, speech, thought, emotion and/or memory” (see also Hill & Leary, 1993; Donnellan & Leary, 1995; Leary & Hill, 1996; Leary & Donnellan, 2012; Robledo et al, 2012). To many autistics–both speaking and non-speaking–difficulty in planning and executing purposeful movement in speech as well as in other domains like pointing, responding to novel motor movement demands and initiating self-directed actions is the most disabling aspect of their disability (Robledo et al., 2012). Although experimental research on movement differences in autism is relatively new (compared to, e.g., putative social differences; Kanner, 1943), researchers are beginning to argue that because movement differences are objective and quantifiable and, the movement perspective on autism shows considerable promise (Torres & Donnellan, 2015).  

Why is there a persistent belief that nonspeaking individuals cannot possibly have the language skills to communicate? Testing. All tests of language, academics, cognition, and intelligence require a motor response such as speech, pointing, gesturing, touching or manipulating objects.  If motor differences are at the core of autism, those with motor planning and control issues significant enough to affect speech will not be able to respond reliably to standardized testing. When an assessment is used that takes advantage of autistics’ strengths (e.g., pattern-matching) and involved making responses that were familiar and well-practiced (e.g., fitting pieces into puzzles), Courchesne et al. (2015) showed that many minimally speaking or nonspeaking school-aged children’s intelligence was vastly underestimated. In fact, a systematic evaluation of data by Edelson (2006) concluded that when appropriate measures of intelligence are used to account for the interference of autism, a significantly lower rate of intellectual impairment was found relative to rates commonly reported in the literature. Despite this finding, the practice of assuming significant intellectual impairment in nonspeaking individuals continues. During an IEP meeting after the team reported his poor performance on triennial testing, my client Ben spelled, “With all due respect, your tests measure my motor skills not my cognitive skills.”

Although my 24 years of clinical experience and reading of the literature makes me confident that my nonspeaking autistic clients experience significant–almost unimaginable–motor challenges, what if I (and many others) are wrong? That is a possibility. But what if the motor perspective is right? If we ignore the implications of motor in autism and assume a lack of interest, motivation, ability, intelligence or desire to learn, how might we fail our nonspeaking clients? This conundrum is called the least dangerous assumption (Jorgensen, 2005). On the one hand, we can accept low standardized test scores as resolute fact, interpret out of control bodies as intentional behavior, and view limited speech as the extent of cognition. On the other, we can believe that testing does not account for all skills, that speech is not an indicator of intelligence, that motor differences can make regulation difficult, and that autistics–just like non-autistics– learn best when valued and will excel when challenged and supported. Both approaches are not without danger if we later learn our assumptions were incorrect. If we put our faith in the results of standardized tests and years later learn that those tests were not an appropriate way to measure a client’s potential or ability, we will have failed to provide them with an appropriate education. If we provide an individual with age-appropriate instruction and later learn that we have overestimated their capabilities, we will also have erred. But to my mind, the latter option represents the least dangerous assumption: I will risk teaching too much and choose to believe that my clients are indeed capable every time.  

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Spelling gave this client the opportunity to participate in a college course at the University of Virginia.

Although the steps involved: assess, teach, shape, practice, and generalize are the basis of most of our intervention as SLPs there is one significant difference when teaching spelling or typing to communicate. The emphasis is on teaching motor skills, not cognitive skills or language, though all of the lessons I use to practice the motor skills are designed to provide content that is interesting, new, and age-appropriate. They may introduce new vocabulary or new concepts, but the presumption is that the client is capable of learning this material and of reflecting on it. The premise of spelling as a form of communication for nonspeaking individuals is that the core issue is motor and that despite motor planning issues for speech, language is intact. Acquisition of skills for letterboards can vary significantly – just as it does in traditional therapy – and depends on factors such as significance of motor impairment, degree of regulation, amount of practice outside of intervention, skill of the communication partner, and the client’s familiarity and relationship with the communication partner.

This was not my assumption for the first 19 years of my career as an SLP, professor, and educator. Language-based intervention was the backbone of my practice as an SLP specializing in autism until I started working with clients on the letterboards. Some of the first clients I worked with on the letterboards were long-term clients whom I had been using traditional methods with for years and years. I quickly found that as the motor skills developed and my clients could accurately and consistently point to the intended letters, their communication became increasingly sophisticated. They used rich vocabulary, grammatically complex sentences, made keen observations and demonstrated age appropriate or better comprehension skills. This was not what I expected given my traditional understanding of autism. My clients began to show me that the traditional thinking about autism–including my own–was wrong.

I spent my first year on the letterboards in constant shock as my clients spelled things that I had not imagined them capable of expressing. I kept asking them, “how do you know this?” and they kept responding with some variation of, “I am always listening.” As my clients became fluent on the letterboards and keyboards, they explained that their motor skills impaired their ability to communicate, to play, to establish friendships, but that they were always listening, observing and absorbing information. They were self-aware and sensitive. I found they each had unique personalities, perspectives, and styles of communicating. They each had their own “voice.” I saw these unique voices not only in my clients but also in the communications of other nonspeakers working with other practitioners or their parents around the world.

Communicating by pointing to or typing one letter at a time is slow. Even though the nonspeaking individuals begin to communicate, it does not change their diagnosis nor their sensory and motor differences. They are still autistic, still have trouble managing their bodies, and struggle to be regulated physically and emotionally.  Carrying over skills to new communication partners is not easy and requires time to build a trusting relationship as working with a new communication partner can be challenging and dysregulating. Communication is only as strong as the weakest partner, so each new person who is going to work with the client needs to learn how to use the letterboards, how to coach the motor, and to develop their skill set as a communication partner.  

The field of autism is still young and we have much to learn. In fact, the first autistic that Leo Kanner studied, Donald Tripplet, is still alive (Donvan & Zucker, 2010). He has lived a life that Kanner would likely have never predicted. Although he was institutionalized as a preschooler, his parents brought him home after a year. He attended mainstream high school, graduated from college and lives on his own in his family Mississippi home. He has been embraced and accepted by his hometown community.

Certainly, more research is needed to better understand how to support nonspeaking autistics find effective ways to communicate. New multidisciplinary research is supporting the motor and sensory differences in autism (e.g., Fournier 2010;  Focaroli et al., 2016; Robledo et al., 2012; Torres & Donnellan, 2015) and researchers are beginning to study forms of spelling to communicate as one method that some nonspeaking autistics have found helpful–an effort I enthusiastically support and participate in. Evidenced-based practice (EBP) is important and informs our work as speech-language pathologists.

ASHA’s guidance (http://www.asha.org/Research/EBP) on EBP states, “The goal of EBP is the integration of: (a) clinical expertise/expert opinion, (b) external scientific evidence, and (c) client/patient/caregiver perspectives to provide high-quality services reflecting the interests, values, needs, and choices of the individuals we serve.” As practitioners, we can contribute to the research enterprise by taking clinical data, analyzing results, and using that data to inform our daily practice. In my practice we have transcripts of every session with our nonspeaking clients as well as periodic video data. We can partner with scientists to develop ways to document and understand the clinical phenomena that we observe. Most importantly, we need the perspective of the speaking and nonspeaking autistic self-advocates who are the true subject matter experts; we can learn from their lived experience of autism.

Once you see a nonspeaking student spell out their thoughts, you can’t unsee it. You have two choices, believe or do not believe what you are seeing. Choosing to believe means that there is more to learn about autism and that we don’t yet have all the answers. Choosing to believe means you must change the way you practice and interact with your nonspeaking clients. My clients’ ability to communicate via spelling pushed me into a complete paradigm shift, into the motor literature and research, and into advocating for the communication rights of nonspeaking individuals.

I have always been proud to be a member of ASHA. As a rigorously trained and experienced SLP, ASHA should allow me to use clinical experience and judgement to make the best clinical decisions to support my clients. Although there have not been any clinical efficacy studies on spelling or typing as a form of communication, you can see that there is strong research supporting approaches with motor based teaching I strongly urge you to withdraw the proposed position statements on RPM and FC and issue a statement of apology for the damage that has been done via the social media campaign around this proposal.

Respectfully submitted,

Elizabeth Vosseller, MA, CCC-SLP

Speech Language Pathologist

Owner/Director Growing Kids Therapy Center

 

Group

#WeStandWithNonspeakers

 

References

 

American Speech-Language-Hearing Association.(2015 Sep). Apraxia a Common Occurrence in Autism, Study Finds. The ASHA Leader. 20(18). doi:10.1044/leader.RIB1.20092015.18.

American Speech-Language-Hearing Association. (2007). Apraxia of Speech in adults. Information for the Public. Retrieved on September 15, 2017 from http://www.asha.org/public/speech/disorders/ApraxiaAdults.

American Speech-Language-Hearing Association. (2007). Childhood apraxia of speech. Position Statement. Retrieved on September 15, 2017 from http://www.asha.org/policy.

Biklen, D., Burke, J. (2006). Presuming Competence.  Equity and Excellence in Education. 39. 166-175. doi: 10.1080.10665680500540376.

Courchesne, V., Meileur, A. S., Poulin-Lord, M., Dawson, M., Soulieres, I. (2015). Autistic children at risk of being underestimated: school-based pilot study of a strength-informed assessment. Molecular Autism. 6(1). 1-10. doi: 10.1186/S13229-015-0006-3

Donnellan, A.M., Hill, D.A., Leary, M.R. (2013 Jan). Rethinking autism implications of sensory and movement differences for understanding and support. Frontiers in Integrative Neuroscience. 28. doi: 10.3389/fnint.2012.00124.

Donnellan, A.M., Leary M.R. (1993). Movement Disturbance. A Clue to Hidden Competencies in Persons Diagnosed with Autism and Other Developmental Disabilities. Madison, WI. DRI Press.

Donnellan, A.M., Leary, M.R. (1995). Movement Differences and Diversity in Autism/Mental Retardation. Madison, WI. DRI Press.

Donvan, J., Zucker, C. (2010 Oct). Autism’s first child. The Atlantic. (online). Retrieved on September 30, 2017 https://www.theatlantic.com/magazine/archive/2010/10/autisms-first-child/308227/.

Edelson, M. (2016 Jan). Are the majority of children with Autism mentally retarded? A systematic evaluation of the data. Focus on Autism and Other Developmental Disabilities.21(2). 66-83. https://doi.org/10.1177/10883576060210020301.

Focaroli, V., Taffoni, F., Parsons, S.M., Keller, F.,  and Iverson, J.M. (2016 13 May) Performance of Motor Sequences in Children at Heightened vs. Low Risk for ASD: A Longitudinal Study from 18 to 36 Months of Age. Front. Psychol. 7.:724 doi: 10.3389/fpsyg.2016.00724.

Fournier, K. A., Hass, C. J., Naik, S. K., Lodha, N., and Cauraugh, J. H. (2010). Motor coordination in autism spectrum disorders: a synthesis and meta-analysis. J. Autism Dev. Disord. 40, 1227–1240. Doi: 10.1007/s10803-010-0981-3.

Jorgensen, C. (2005). The least dangerous assumption. A challenge to create a new paradigm. Disability Solutions. 6(3). 4-15.

Jorgensen, C. (2007). Presumed competence reflected in the educational programs of students with IDD before and after the Beyond Access professional development intervention. Journal of Intellectual & Developmental Disability. 32(4). 248-262. doi: 10.1080/13668250701704238

Jorgensen, C. (2016 Aug). Inclusion is More Than Just Being “In”: A Planning Process for Full Participation and Learning; Instructional Adaptations and Technology Tools that Support Inclusive Learning.  Presented at “Communication is More Than Just Speech. Building Inclusion Through Typing.” ICI Summer Institute. Columbia, Maryland.

 

Landa, R.J., Libertus, K., Sheperd, K.A., Ross, S.W. (2014 Dec). Limited fine motor and grasping skills in 6-month old infants at high risk for autism. Child Development. 85(6). 2218-2231. doi: 10.1111/cdev.12262.

Leary, M.R., Hill, D. (1996). Moving on: autism and movement disturbance. Ment. Retard. 34. 39-53.

Robledo, J., Donnellan, A.M., Strandt-Conroy, K. (2012 Nov). An exploration of sensory and movement differences from the perspective of individuals with autism. Frontiers in Integrative Neuroscience. 16. doi: 10.3389/fnint.2012.00107.

Tierney, C., Mayes, S., Lohs, S., Black, A., Gisin, E., Veglia, M. (2015 Oct). How valid is the checklist for Autism Spectrum Disorder when a child has Apraxia of speech? J Dev Behav Pediatr Journal of Developmental Behavior Pediatrics.: 36(8). 569-74. doi: 10.1097/DBP.0000000000000189.

 

Torres, E.B., Donnellan, A.M. (2015) Editorial for research topic “Autism: the movement perspective.” Front. Integr. Neurosci. 9(12). doi: 10.3389/fnint.2015.00012

 

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Open letter to ASHA from Emma Budway & Benjamin McGann

Emma: My name is Emma Budway,

Ben: and I am Benjamin McGann and we both use spelling to communicate.

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Ben & Emma at the ASAN 2016 Gala. where they received the award for Self Advocates of the Year 

Emma: The majority of my and Benjamin’s childhood was spent in countless therapies and special education.

Ben: Each claiming to get through to the autistic child and teach him or her to be normal, or at least their version of normal.

Emma: The problem with that is we are not their version of normal. We do not move, communicate, or learn in conventional or traditional ways. Yet, we are tested and measured in conventional and traditional ways.

Ben: Those tests show results that do not accurately reflect our true intellect or ability to take in and comprehend information. They do reflect, however, the disconnect between brain and body.

Emma: That is where spelling to communicate benefits nonspeaking autistics. It’s not someone simply picking up a letter board and words magically come out,

Ben: It involves rigorous training for the communication partner, and weeks to months and sometimes even years of practice and dedication for the autistic and their family to be able to get to open communication.

Emma: Now that we can, we can tell our families we love them.

Ben: We can tell doctors what hurts.

Emma: We can teach the Neurotypical world about the Neurodiverse.

Ben: If that is taken away, a generation of bright minds will be silenced once again.

Ben

Ben & Emma have been friends since preschool, now they have a way to communicate with each other.

Sincerely,

Benjamin McGann and Emma Budway

Open Letter to ASHA from The I&I Guys

Re: [TIME SENSITIVE] ASHA Policy Statement on RPM

My name is Thomas Pruyn and I am a nonspeaking autistic who uses spelling to communicate.

I am Ryan McMahon and I am a nonspeaking autistic who uses spelling to communicate.

Like many other nonspeaking autistics, I, Ian Nordling, have found my voice by spelling on a letterboard to communicate.

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Tom: We are a group of young adults who have undergone various tests, interventions, techniques and methods all trying to fix something that was purportedly broken.

Ian: The many other therapies fall short as they do not necessarily meet the basic need for meaningful communication. Do not limit my expression to a handful of pictures or icons. I have so much more to share.

Ryan: When one experiences apraxia, which is the difficulty connecting brain and body and executing purposeful motor, and is given tests using or requiring fine motor skills to measure intellectual ability he will undoubtedly fail. How valid can the results be?

Tom: My life is different because my body is wired differently than yours. However, my brain is bright. I have emotions and a thirst for knowledge, relationships, and to lead a life that is fulfilling.

Ian: Our story is not unique to us. We are a group of friends but more pertinent to the proposal, we are nonspeaking people who need a letterboard to communicate.

Tom: Being able to express ourselves reliably requires a letterboard and a trained communication and regulation partner.

Ryan: We deserve to have a voice. Stopping proper research through an attempt to discredit methods that use letterboards means people like me must speak louder than ever.

Tom: We write to you to implore you to consider the extremely negative impact of this proposal. Using the letterboard has allowed me to show my intelligence, to participate in the activities that guys my age enjoy like family game nights and intellectual conversations, and more importantly, to share my needs, wants, and dreams.

Ian: Like most people, I just need the basics to live. I need communication to live a life of autonomy. It is as important as food and water.

Ryan: It is most important to realize that this proposal promotes exclusion.

Tom: We ask you to reject the proposal and stand by those with motor, sensory, and communication differences. Include us. Accept us. Hear us.

Sincerely,

Ian Nordling, Thomas Pruyn, and Ryan McMahon