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

 

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#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

A Myth of Giant Proportions

When I first started working at Growing Kids, I worked with students who were brand new to Spelling to Communicate, as well as some who started with Elizabeth beforehand. Over that time, skills began to build, goals were being met, and fluency was increasing. For the students and for myself, as well! Doing a regular, ol’ lesson was getting too easy. We ALL needed a new challenge!

Mythology has always been one of my favorite topics, and I found that it also was a great way to get students to be creative in their own writing. There is always an interesting explanation of natural phenomena, like the changing of the seasons or how fire was created for man. Most importantly though, there is a moral to every story, a lesson to be learned. I was not quite prepared for the lessons my students taught me with their very own “mythology”. You’ll see what I mean.

With every lesson we do, there is always a “creative writing” question at the end. It’s a chance for the speller to express his/her thoughts on the topic. It’s a chance to be creative. This is always my favorite part of the lesson – personalities really start to shine! One of those personalities, is that of my dear friend, Alex.

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Alex is 17 years old and types on a held keyboard. He had been typing pretty smoothly on the keyboard for a while, and I decided it was a good time to practice typing longer chunks at a time. But I wanted to keep it fun! We were doing a lesson on spirit bears (the white bears that live in Canada) and in it, I included the mythology of the spirit bear. This led to the following creative writing prompt:  Write a myth/story about Spirit Alex! 

The story you are about to read, written by Alex, took several weeks to finish. We started out every session with a lesson to warm-up his arm, and we ended every session with his myth. The result is a beautiful, funny, heartwarming story that teaches a very valuable lesson. Check it out below, and feel all the feels!
Thanks for reading,
-Meghann

The Myth of Spirit Alex:

There once was a time when the earth was ruled by blond haired, gentle giants. However, these giants were not very smart. They often found themselves outsmarted at every village trivia night. They were always very good about losing, very kind and congratulatory to the winners. But inside all they wanted was to win. They decided to consult with their ancestors about what to do. The ancestors told the giants they would help. They told the giants to make bread dough, and to sprinkle it with lemon zest. The giants were to then sing to the dough ball.After their delightful serenading, the giants were to place the dough on the front step and go right to bed.

The next day, the giant named dad woke to crying and went to see what was up.
Lo and behold the crying was coming from the big baby now laying where the dough ball was. Dad yelped with glee and shouted for his wife, named mom, to come right away and see what the ancestors had done. Once mom saw what all the commotion was about she knew this baby was a gift from the ancestors. So, she called him Alexander.
Pinned under Alex was a note and it said:

This baby will teach you many things. First you should know that this baby is unlike any other baby. He does not communicate  like other people and he will say things he does not mean to say. It is up to you mom and dad to make this baby feel loved unconditionally and in return he will teach you both things you never thought were possible. P.s. He is super smart and will definitely help you win village trivia night.
Mom and dad were floored but they were up to the challenge. They scooped Alex up and brought him indoors.

Over the next few years Alex proved to be quite a handful.Dishes were broken, hair was pulled, tantrums were thrown and big messes followed Alex like a shadow. But no matter how infuriated mom and dad were at times, they cherished Alex and continued to let him be his own person.

One day, when Alex was big but not fully grown, he met a wise woman and her sidekick, sensei Elizabeth and master Meghann. They were the diamonds in the rough that was Alex’s and mom and dads life. First sensei E showed the trio the Alex that was trapped inside his giant and rude body. Then master Meg continued to push Alex to be stronger. Before you know it, mom could communicate with her boy at last, and he even made a few good pals.
But no matter how big the progress was Alex still was not ready for trivia night. He was swearing like a sailor, drawing on walls and pulling hair. The people of the village could not understand Alex and therefore did not like him very much. 

The people who adored him, however, never gave up on their doughy boy. Cue eye of the tiger, because they all went rocky style on those disbelievers butts. Days turned into weeks, weeks turned into months. Mom knew she needed to take matters into her own hands.
And that is exactly what she did. Gone were the days of trying to fit a square peg in a round hole. Alex was being hurt more than he was being helped by the people in the village who were trying to mold him into one of them, one of the normies. Mom was reminded of the letter left by the ancestors. This baby is unlike any other baby. Of course he was not going to be or learn like other kids, Alex was not like other kids. This was a huge turning point for the whole family.

Alex was inspired now more than ever. No stopping him now. Days and nights passed as Alex and mom worked tirelessly on his social skills. So when the day finally came, Alex was ready to compete in the event. He was on a team with mom, dad, sensei E and master Meghann. They were not at all nervous looking at their competition. Then the bell rang, it was time to start. The first ten questions were too easy for Alex. The next ten were a little less easy but not too hard for Alex. The last round, however, had Alex and the team sweating. He did not know if he knew the answer to the last question. What did Egyptian medics believe was the cure for flatulence? Wait a second, Meghann talked about this. Just then Alex spelled the answer. Leeches. The bell rang, the winner was announced. It was team giant. The crowd cheered and chanted his name. Alex did it.  The end.

Tribe and UVA Part 2: Social Connections and Friendship

There are many reasons why I love being so involved with Tribe, but the UVa-Tribe exchanges are at the top. As a UVa alum, a friend of Vikram (who teaches the course), and as an educator at GKTC, it’s truly the case of my worlds colliding, and it’s the best thing ever.

GKTC Tribe and UVa undergraduates met on October 28, 2017 for their second exchange in The Science and Lived Experience of Autism collaboration. The theme of the year-long collaboration is Creating Welcoming Communities. 

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In Exchange 1, the students discussed what makes people feel welcome or unwelcome. Following the design thinking process from a separate collaboration with the University of Maryland over the summer, we discussed how to redesign the meet-and-greet experience, which tends to be pleasant small talk at best. In Exchange 2, the students discussed what comes next – “making meaningful social connections and developing friendships.” We welcomed Assistant Professor of Psychology, Matt Lerner, from Stony Brook University, who studies friendship in speaking ASD adolescents.

We kicked off the first round of discussions by comparing how neurotypical people express their interest in social situations:

Ian: I know that there are a lot of expectations during conversation, like eye contact.

Sam (UVA): Facial expression

Flo (UVA): Body language

Madison (UVA): Voice intonation

Ben: Getting a smile from a stranger

Katie (UVA): Asking questions and being active listener

Emma: Leaning in

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Tribe then shared their experiences, particularly not being able to control their body to show interest in a typical way even though they are very much interested and engaged. 

Ryan: How most people interpret my behaviors is very different than I intend.

Ben: I always mean to look interested in others but I do not always meet others’ expectations. Hard enough to make my speech understood, much less make my hardheaded body comply.

Tom: My mouth is always saying something. Please don’t mistake it as a sign of my intelligence.

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What Vikram said in his group summarized things well: “We expect socially interested people to behave in certain ways because that is how we behave – when we’re happy/sad we look like this, expect others to do the same. We all recognize that just because someone doesn’t behave in certain way, doesn’t mean they’re not interested.”

We also discussed social competence, which can be summarized as:

Flo (UVA): Being flexible in different contexts and having an awareness of social standards;

and

Madison (UVA): understanding the needs of your surroundings and needs of other people and matching the needs between them.

Tribe shared their thoughts and experiences as nonspeaking autistics regarding studies that say speaking autistics take more time to process social cues.

Emma: No, [processing social cues is] not difficult, Huan can explain.

Huan: I’m with Emma, having a body that’s uncooperative has its upsides, like being able to process information in our brains rapidly.

Ian: I am completely capable of reading people’s social cues and understanding in the moment. It’s not slow processing, it’s a non-reliable body. What you see is not always what I feel.

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Matt added to the part of the discussion where we discussed other factors that might affect how socially interested we look: “I think another reason for this is that a person can have competing intentions in the same situation and can resolve behavior into one overriding intention. I’m here and I want to be social or I’m here and don’t want to be social. Say you are at a party with your boss and you want to be social but you are afraid of approaching him. These variables are not static.”

Elizabeth made a good point in response: “We tend to love static variables. How you might socialize in this class environment is very different than how you would socialize at a party with friends or even a dinner party your parents are throwing.”

Given our discussions of social competency (the standards of which were created through an NT lens) and the stories Tribe has shared, we can begin to reset expectations and the NT’s understanding of nonspeaking individuals and their perceived sociability. 

After lunch, we came together as a large group and shared out what was discussed in the breakout discussions. While we were talking about the social standards that society has set for autistic people to achieve, the social skill competencies we’ve built into IEPS, I was reminded of a quote Lisa had shared almost a couple of years ago: “I would just say just treat me the way you want to be treated.” In the moment I didn’t think of it, but Matthew also shared something along the same lines: “To my peers, we are both people so just treat me like a person.” We’ve created these lists of skill sets that we emphasize as necessary to demonstrate social competence. There are standards that we push the neurodiverse to reach, but there is also another standard for the neurodiverse AND neurotypical alike: the human standard – to be treated and respected as a human being and to treat and respect others as human beings. Elizabeth added, “What power was vested in us as NT that makes us think we are the litmus of all things socially appropriate?”

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The remainder of the large group meeting was a Q&A panel with Tribe and Matt:

Ian: I was wondering if we broke any stereotypes about non-speakers than you may have believed

Matt: I have spent a lot of time with nonspeaking people so I try not to have stereotypes. One that stands out, that I’m sure you know, is that your bodies aren’t always doing what you want them to do. I think there is a stereotype that you aren’t paying attention. I think what you all show is that even if you are playing Angry Birds or making sounds it doesn’t mean you aren’t paying attention or listening. I think you broke the stereotype in a big way so thank you.

Huan: I want to know if Matt thinks we’re socially competent.

Matt: I have a confession. I have a lab called the social competence lab. I’m still not sure I know what social competence is. You guys tried to define it earlier today and I’ve read almost everything I can on the topic. I think that social competence is about meeting your own goals. I think it depends on what your goals are Huan, it depends on your standards and that’s what matters.

Huan: Absolutely, yes

Ryan: I’m curious to know if and how NTs are taught to interact with autistics

Matt: It doesn’t happen too much. I think the places it happens are very variable. I think the ones you are having is rare. I teach a class at Stony Brook with 200 undergraduates and they read the research. I make sure 1/3 of the class is autistic. Most of the ways people are taught to interact with autistics is through clinical training and speech pathology. I don’t think we have yet achieved a standardized way that that happens. Some fields do better than others. So Ryan, to answer your questions, not enough. This is why we need good science in order to come up with ways to make training more inclusive. 

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The students broke out into their project groups for the remaining time to discuss specific aspects of creating more welcoming and inclusive communities, communities in which nonspeaking autistic individuals can “be accepted as me and treated like you,” as Ryan shared. Look forward to their projects about preventing bullying/harassment, housing options, supporting transition to higher education and providing employment!

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Until next time!

~ Janine Abalos and The Tribe

DEEJ The Movie: Inclusion shouldn’t be a lottery

What a spectacular night at the Atlas Theater in Washington DC for the screening of Deej! Deej is the must-see documentary about DJ Savarese, a nonspeaking autistic and his journey to be included as a college student. The film is powerful and a story that we hope will become common for all of our students. GKTC’s Benjamin McGann participated in a post-screening panel.  Benjamin is a nonspeaking self-advocate and a board member of The Nonspeaking CommUnity Consortium.  Benjamin discussed his thoughts on the film with: Julia Bascom, Executive Director of ASAN; Erica Ginsberg, Executive Director of Docs in Progress; Jenn Lynn, Executive Director of Upcounty Resources; Elizabeth Vosseller, Director of Growing Kids Therapy Center; and Robert Rooy, the director of Deej. Benjamin brought his usual wisdom, insight, and eloquence to the discussion.

The Atlas Theater, Washington DC

Benjamin McGann shares his thoughts about Deej having editorial control in this documentary.

When asked what Ben thought about the film he responded,  LOTS TO ABSORB. I LOVED IT ALL THOUGH.
Ben introduced himself. HI, I’M AUTISTIC. I AM REALLY REALLY HAPPY TO COME TOGETHER TONIGHT.

The panel discussed the film and the fact that Deej was such an intrinsic part of the film and its production.  Ben added,  MY THOUGHTS ARE RACING. THIS IS THE STORY WE NEED TO TELL OTHERS AND SHARE. THANK YOU, ROB, FOR TELLING THIS STORY SO RESPECTFULLY.

“…I CAN THINK AND LEARN AND LOVE AND WORK”

Julia Bascom talked about autism and disability in adulthood and the support needed for adults with disabilities to be successful.  In response to Julia’s points, Ben elaborated, THANK YOU. I USUALLY INTERNALIZE THESE KINDS OF FEELING.  IT IS REFRESHING TO HEAR THIS KIND OF DISCUSSION. I AM AN ADULT, HOWEVER, MANY VIEW ME AS A CHILD BECAUSE I CANNOT SPEAK. BUT I CAN THINK AND LEARN AND LOVE AND WORK.

An audience member asked, “Ben, what gives you hope about the future?”
B: I HAVE HOPE COMING HERE TONIGHT AND SEEING THIS FILM AND HAVING THIS DISCUSSION WITH ALL OF YOU.

 Deej screenings are being held all over the United States and Canada, often with panel discussions following the film. Be sure to check the Deej Facebook page for a screening near you.
~Elizabeth and Benjamin

Letterboards, not just life changing.. life saving

I am so excited to introduce Diane Belnavis and Brent Sullivan as guest bloggers!  We formed an instant friendship when I met Brent, Diane and Dylan at the TASH Conference in Portland Oregon in November 2015. They have one of the most beautiful stories I have ever heard and it keeps getting better and better with time.  I am so grateful to Brent and Diane for their willingness to share their story.  Be sure to meet Brent at the Nonspeaking CommUnity Consortium’s Motormorphosis Conference July 21-23, 2017!

Diane’s story:
In the spring of 1984, six years before my son Dylan was born, Brent joined our family. He is a non-speaker with autism and is now 48 years old.

Dylan (left) and Brent (right)

While in graduate school in Oregon in the early 80’s, I worked as the night manager of a group home for children with disabilities (yes, children. really). Brent moved into the home with four other children in 1982. He was thirteen years old. When I finished my degree a few years later and left my job at the group home, Brent came with me. By that time, we were close friends and I knew that there was no way I could leave him behind.

My son Dylan was born six years later. They grew up as brothers and have always been close, even though there is a 20 year age difference. When Dylan was in elementary school, he wrote an amazing story titled ‘My very own Rain Man’. It is the story of his childhood with Brent. They have created their own holiday family traditions together, and Brent has been there with Dylan through every one of life’s milestones.

Dylan was living in Portland, Oregon when Brent began using the letterboard three years ago. Of course I kept him up to date on the progress Brent was making, but until he saw Brent do it for himself, the reality of Spelling to Communicate didn’t really sink in. He met Elizabeth and the GKTC tribe in 2015 when they presented in Portland at the TASH conference, and months later decided to move back to Pennsylvania to learn letterboard with Brent.

Brent and Dylan – brothers in every meaning of the word.

Dylan became Brent’s official staff person last year and they now work on letterboard a few times a week (in between farm chores and planting sunflowers!). Last fall, Brent spelled to Dylan ‘Stop I am in need of medical attention’. Since then, for the last six months, Brent has been guiding us with spelling… through medical appointments, surgery, ultrasounds, cat scans, blood work and XRays. We have practiced scenarios, watched YouTube videos to prepare, and Brent has instructed us, by letterboard, what to say to the doctor in order to lessen his anxiety and keep his body calm through exams. I go into each test and appointment first, and explain to the doctor or technician the requests Brent has made and the trigger words to avoid.

Dylan was dedicated to learning to use the letterboards with Brent.

He has been unbelievable. He has been completely successful in completing everything asked of him. He has guided Dylan and me through each day as far as how he wishes to change his diet and his daily routine to improve his overall health. He has spelled ‘Do not offer me any sugar’, ‘Take me to the Y for exercise’, and even ‘No, I don’t want ice cream, I want a fruit smoothie for dessert’!

In March, he spelled to Elizabeth ‘Letterboard has saved my life’.

“THE SAD REALITY IS THAT MANY HAVE GIVEN UP ON ADULTS. OUR LIVES MATTER.”

Brent’s story:
MY DESIRE IS TO ADVOCATE FOR COMMUNICATION SUPPORTS AND HOUSING FOR ADULT AUTISTICS. LIFE IS WORTH LIVING NOW THAT I HAVE COMMUNICATION. ELIZABETH, COMMUNICATION JUST SAVED MY LIFE. I FEEL GRATEFUL BECAUSE I TOLD MY DOCTORS WHAT WAS HAPPENING. I AM WORRIED BUT BELIEVE IN THE DOCTORS AND MEDICAL INTERVENTION.

ELIZABETH, I AM THE MOST LUCKY MAN EVER. BUT THE ONES IN SILENCE ARE NOT SO LUCKY. THEY MIGHT NOT EVER BE ABLE TO TELL SOMEONE THEY ARE SICK. THEY MAY NEVER SAY I LOVE YOU. THEY NEED TO LEARN HOW TO SPELL ON THE STENCIL BOARDS AND LETTERBOARD TOO. TEACH THEM LIKE YOU TAUGHT ME.

ELIZABETH, I WAS THINKING ABOUT MY LIFE. I NEED TO MAKE SOMETHING OF MY TIME ON EARTH. THE WORST THING IS TO BE A VISITOR TO LIFE INSTEAD OF A PARTICIPANT. I WANT TO ADVOCATE FOR OTHER INDIVIDUALS WHO ARE TRAPPED IN THEIR OWN BODIES. THEY MUST FEEL THE SAME LONELINESS I DID. TIME TO JOIN THE CONVERSATION INSTEAD OF BEING THE CONVERSATION.

THE SAD REALITY IS THAT MANY HAVE GIVEN UP ON ADULTS. OUR LIVES MATTER. ELIZABETH, THIS IS MY MISSION NOW. THE ADULTS HAVE GONE SILENT TOO LONG. MY QUALITY OF LIFE HAS CHANGED DRAMATICALLY SINCE I STARTED SPELLING WITH DIANE AND ELIZABETH AND DYLAN.

ELIZABETH, NOT WITHOUT SPELLING WOULD I HAVE BEEN ABLE TO GET THE MEDICAL HELP I NEEDED. JUST HOW MANY HAVE DIED OR SUFFERED JUST BECAUSE THEIR OWN BROKEN BODIES CONDEMN THEM TO SILENCE?

ELIZABETH, THERE IS MUCH WE NEED TO DO. LET’S REACH OUT TO SILENT ADULTS AND TEACH THEM TO SPELL ON THE LETTERBOARDS. TEACH PARENTS, CAREGIVERS AND THOSE WHO WORK WITH MENTAL EDUCATION THAT ONE IS NEVER TOO OLD TO LEARN.

 

Elizabeth and Brent hamming it up!

Thank you to Brent and Diane for sharing their beautiful story, dreams and hopes with us. I am truly grateful to have you all in my life!  ~Elizabeth