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Improving K-12 education for students on the autism spectrum in Montgomery County, MD

Nonspeaking Autistic Students Resources

Welcome to the xMinds Nonspeaking Autistic Students Committee webpage. Our goal is to contribute to the improvement of educational outcomes and experiences of nonspeaking and minimally speaking autistic students in Montgomery County by providing information and data on and from nonspeaking autistic students. This is a work in progress and we encourage questions and open conversation, as well as suggestions for additional information to be added to this page. Please note that inclusion of any therapies or communication methods on this page does not constitute an endorsement by xMinds.

Terminology

What exactly is speech? And why do we describe individuals as "nonspeaking" rather than "nonverbal?"

According to the American Speech and Hearing Association (ASHA) website “Speech” is “how we say sounds and words” and includes articulation, voice and fluency. 

Because the term ‘nonverbal’ derives from the Latin word for ‘without words’ it perpetuates the inaccurate assumption that individuals  without speech are unable to use words entirely. In fact many nonspeaking autistic individuals communicate using words even if they do not communicate by speaking those words; instead they communicate by writing, typing, using sign language, letter-boards,or eye-gaze -- and they often understand words they read and hear. It is for this reason that we prefer the term "nonspeaking" over the more commonly used term "nonverbal." The term Nonspeaking is not only more accurate, but is preferred within the autistic community, according to the Autistic Self-Advocacy Network.  


What is AAC or Augmentative and Alternative Communication?

Communication devices, systems, strategies and tools that replace or support natural speech are known as augmentative and alternative communication (AAC).  These tools support a person who has difficulties communicating using speech. They can be as low tech as using sign language or pencil and paper and as high-tech as electronic voice-generating devices. Examples of AAC are found later on this xMinds webpage, and you can see a comprehensive introduction to AAC here.  

Myths About Nonspeaking Autistic People

Popular misconceptions about nonspeaking autistic people:

  • nonspeaking people aren’t as intelligent as their speaking peers
  • autistic people who are nonspeaking cannot communicate

These statements are unsubstantiated. To get a fuller picture of what nonspeaking autistic people are really capable of, we invite you to explore the resources on this page from nonspeaking autistic people themselves, as well as the academic research and other media we have collected here.

General Information

There is a dearth of data on people with autism who are non– or minimally–speaking, so that even the most basic information is hard to find

Surprisingly, it is not even known with certainty what percentage of autistic individuals fall within the category of non– or minimally speaking. Estimates range from 25% to 40% of all individuals with autism. From our review of the research, it seems that the most commonly cited proportion is one-third. 

In an effort to learn basic information about this population for the school age population in Maryland, and specifically in Montgomery County, xMinds will be placing a request to the Maryland State Department of Education (MSDE) asking the following questions, and we will update this page with answers as we receive them: 

  • How many and what percentage of autistic students in Maryland public schools are non– or minimally–speaking?
  • How many and what percentage of autistic students in Montgomery County Public Schools are non– or minimally speaking?
  • How many students receive AAC (Augmentative and Alternative Communication) in MCPS?
  • In which MCPS programs are non– or minimally–speaking autistic students placed?  Which of these are diploma track and which are certificate track?
  • How many non– or minimally –speaking autistic students graduated with a diploma in the 2018-2019 school year?
  • What communication methods and/or supports does MCPS use with nonspeaking students?

Here is what we can estimate:  Based on the 2020 CDC report on prevalence of autism, 1.85% of the 164,000 MCPS students are autistic. That means 3,034 MCPS students are autistic. If 25% to 40% of the autistic students are nonspeaking, the population of nonspeaking autistic students in MCPS may be in the range of 758 to 1,214 students.

Straight from the Real Experts: Nonspeakers


Blogs and Articles

  • NeuroClastic is a nonprofit collective of neurodivergents who provide information about the autism spectrum in their own voices.
  • “I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second - on becoming a free soul. I had to fight to get an education but I succeeded, graduating high school with a diploma and a 3.9 GPA. I am continuing my education in college. I communicate by typing on an iPad or letter board.”
  • …”he sat up and began to talk, and Jesus returned him to his mother”. Luke7:15
  • My name is Mitchell and I am an autistic teen. I want to share my life with the world in hopes that I can bring awareness of what it is like to live with autism. I believe spelling as a form of communication is not well understood and I hope to bring awareness to this lifestyle and change that for autistic people everywhere

Books Written By

  • Carly's Voice: Breaking through Autism, by Arthur Fleischmann and Carly Fleischmann
At the age of two, Carly Fleischmann was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted that she would never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioral and communication therapy, Carly remained largely unreachable.  Then, at age 10 Carly had a breakthrough.
  • Ido in Autismland, by Ido Kedar

Ido in Autismland opens a window into non-verbal autism through dozens of short, autobiographical essays each offering new insights into autism symptoms, effective and ineffective treatments and the inner emotional life of a severely autistic boy.

  • The Mind Tree, by Tito Rajarshi Mukhopadhyay

In The Mind Tree, we meet Tito, a severely autistic and nearly nonverbal child who, despite these challenges, has an astonishing ability to communicate through writing.

  • The Reason I Jump, by Naoki Higashida

Parents and family members who never thought they could get inside the head of their autistic loved one at last have a way to break through to the curious, subtle, and complex life within. Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to ask.

Videos Featuring

  • A café experience from the perspective of Carly Fleischmann, a nonspeaking autistic teen. 
  • Trailer for the 2018 Emmy nominated movie documentary "Deej," about a nonspeaking autistic young man, told through his own words and poetry.  
  • Ido Kedar:  Autistic teen uses iPad to break out of silent prison, and NBC feature story.  
  • Danielle's Voice is a series of short videos showing a nonspeaking young autistic woman spelling her ideas and thoughts on a letter board.
  • Documentary video that follows the making of "Loop," a Pixar animated short film featuring a nonspeaking teen 
  • Short film (13 minutes) about nonspeaking 8-year old Thaysa Lumingkewas, and her successful inclusion in a general education class. It highlights the power of presuming competence, differentiated instruction, and augmentative and alternative communication.

Websites and Organizations Dedicated to Nonspeakers


The Center for AAC and Autism
 serves as a resource for parents and children working to improve the language and communication skills of individuals with autism.  The Center also conducts trainings in the "LAMP" methodology, which is a method of improving communication skills that begins by giving the autistic individual access to core words on a speech generating device. 

CommunicationFIRST is the only nonprofit organization dedicated to protecting and advancing the civil rights of more than 5 million people of all ages in the United States who, due to disability or other condition, are unable to rely on speech alone to communicate.

International Association for Spelling as Communication, located in Herndon, VA.  Their mission is to advance communication access for nonspeaking individuals globally through training, education advocacy and research.

NeuroClastic is a nonprofit collective of neurodivergents who provide information about the autism spectrum in their own voices. See this contribution from nonspeaking students. 

Reach Every Voice, nonprofit located in Rockville, MD. Their mission is to empower individuals with complex communication needs; they provide individual communication instruction as well as group activities for individuals in the typing community.

The Jaswal Lab at the University of Virginia is committed to building a world where autistic people are valued, supported, included, and welcomed. Their mission is to conduct meaningful, useful, and interesting autism research, inspired and informed by autistic people, their families, and the community. Here is a summary of an important study the Jaswal Lab has conducted, which demonstrates that autistic individuals using a letter board are typing their own thoughts -- they have "agency." 

Teachers' Toolkit for Students with Little or No Speech, a resource for educators offered by the Australia-based organization Communication Rights Australia. Some of the terms and agencies are different than in the U.S.

Therapies and Methodologies


ABA/Verbal Behavior (VB)

ABA/Verbal Behavior (VB) therapy is based on the principles of Applied Behavior Analysis (ABA) and the theories of behaviorist B.F. Skinner. This approach encourages people with autism to learn language by connecting words with their purposes. The student learns that words can help them get desired objects or results.  Find more information on ABA/VB.  See a video of a Verbal Behavior Therapy session here. In the video the term "mand" is used. A mand is a request. A child mands when the motivation is high. 


Association Method

The Association Method is a multi sensory, phonics-based method which is highly intensive, incremental, and systematic in its design, enabling seriously communication-impaired children to acquire reading, writing, and oral language skills simultaneously.  Find more information on the Association Method.


Facilitated Communication **  See note below concerning Facilitated Communication and RPM

Facilitated Communication (also know as supported typing) is a form of AAC in which a communication partner physically supports the autistic individual and helps them to point at pictures or words.  


PROMPT Speech Therapy

PROMPT, an acronym for PROMPTS for Restructuring Oral Muscular Phonetic Targets, is a multidimensional approach to speech production disorders. It has come to embrace not only the well-known physical-sensory aspects of motor performance, but also its cognitive-linguistic and social-emotional aspects. PROMPT is about integrating all domains and systems towards positive communication outcomes.  Find more information.  See a video of a PROMPT Speech therapy session here.


Rapid Prompting Method (RPM) ** See note below concerning Facilitated Communication and RPM

Soma-RPM is an academic program leading towards communication, the expression of reasoning and understanding, more reliable motor skills, and greater sensory tolerance. For more information on RPM click here.  To see videos of RPM sessions click here and here.  For a TEDx talk about RPM (including demonstrations) by journalist and mother Parisa Khosravi click here . 


Spelling to Communicate (S2C)

Spelling to communicate teaches individuals with motor challenges the purposeful motor skills necessary to point to letters to spell as an alternative means of communication.  Find more information.  See a video demonstration here


 Important Recent Finding:  A recent study published in May 2020 by Nature further bolsters autistic advocates' position that the blanket dismissal of assisted autistic communication is unwarranted. This study demonstrates by tracking eye-gaze of nonspeaking autistic individuals who are pointing to letters of the alphabet, that they are in fact expressing their own words and selecting letters with their own agency.


**Note on the controversy associated with Facilitated Communication and RPM.  In 2018 the American Speech and Hearing Association (ASHA) issued a position statement discouraging the use of Facilitated Communication and RPM, claiming that the words were cued by facilitators and were not the words of the autistic nonspeakers. The autistic community and other advocates of nonspeakers responded strongly in opposition to ASHA's position. Relying on the ASHA statement, MCPS currently does not support the use of RPM or Facilitated Communication by students.

Augmentative and Alternative Communication (AAC)


What is AAC or Augmentative and Alternative Communication?

Communication devices, systems, strategies and tools that replace or support natural speech are know as augmentative and alternative communication (AAC).  These tools support a person who has difficulties communicating using speech. They can be as low tech as using sign language or pencil and paper and as high-tech as electronic voice-generating devices. Examples of AAC

are found later on this xMinds webpage, and you can see a comprehensive introduction to AAC here.  

Examples of AAC Devices

These are organized from lowest technology to highest.  This is not a complete list, but spans the range of options.

Sign Language

American Sign Language (ASL) is a complete, natural language that has the same linguistic properties as spoken languages, with grammar that differs from English.  ASL is expressed by movements of the hands and face. It is the primary language of many North Americans who are deaf and hard of hearing, and is used by many hearing people as well. For more information.  Here is a video

BIGmack Communicator

BIGmack Communicator records a repeated phrase from a story or song for a user to play back at the right time. Here is a video.

Picture Exchange Communication System "PECS"

PECS is a unique alternative and augmentative communication system developed in the United States in 1985 by Andy Bondy, Ph.D. and Lori Frost, MS, CCC-SLP.  PECS was first implemented with pre-school students diagnosed with autism at the Delaware Autism Program. The PECS teaching protocol is based on B.F. Skinner's book, Verbal Behavior, and broad spectrum applied behavior analysis. For more information.  Here is a video.  

Low-tech Board

Here is a video. 

PODD (Pragmatic Organization Dynamic Display) book

PODD is normally a book or device that contains symbols and words to support communication between people with complex communication needs and their communication partners, whether that's carers, friends or support workers.  Here is a video.

Communication Board with head switch and partner assisted scanning

Here is a video.

ProxTalker

ProxTalker uses radio frequency identification technology (RFID) to enable independent verbal picture communication for non-verbal people. To trigger voice output place your sound tag card on any one of the 5 buttons and push. Here is a video

Switch Scanning

If a student is unable to physically select an option or choice on a screen, switch scanning can be used to move through the options and to select the option they want. Switch scanning is a setting available in certain software that enables a scan box to move across a series of on-screen items (it will highlight and/or provide an auditory prompt for each item).  The student can then activate a switch to select the desired item. Here is a video

TouchChat

TouchChat is a full-featured communication solution for individuals who have difficulty using their natural voice. TouchChat is designed for individuals with Autism, Down Syndrome, ALS, apraxia, stroke, or other conditions that affect a person's ability to use natural speech. The user presses buttons with his or her finger to direct the device to produce speech. Here is the video

Dynavox

This speech-generating device can be controlled by pushing buttons or by head movement. Here is a video.

LAMP Words for Life

LAMP Words for Life is structured to enable early success and allow the client's vocabulary and communication skills to grow in a way that doesn't require re-learning along the way. For more information.  Here is a video.

Proloquo

A symbol-based AAC app for iPad and iPhone (or iPod Touch). The user taps on or uses an adaptive switch to select a symbol that represents a word or phrase. The app then converts the input to natural-sounding voices. Here is a video.

Eye Gaze

Eye gaze or eye tracking is a way of accessing your computer or communication aid using a mouse that you control with your eyes. For more information.

Speech and Intelligence -- Why xMinds Presumes Competence

One common assumption about nonspeaking autistics is that they have below average intelligence. However, research shows this assumption is not universally true. Below are some research articles, which shed light on this question. 

From an article by Bal, Katz, Bishop, and Krasileva, published in the Journal of Child Psychology and Psychiatry in 2016, entitled "Understanding Definitions of Minimally Verbal Across Instruments: Evidence for Subgroups within Minimally Verbal Children and Adolescents with Autism Spectrum Disorder."  Read the full article.

Key Quote: Minimally verbal (MV) children with autism spectrum disorder (ASD) are often assumed to be profoundly cognitively impaired and excluded from analyses due to challenges completing standardized testing protocols. A literature aimed at increasing understanding of this subgroup is emerging; however, the many methods used to define MV status make it difficult to compare studies...This cautions against the assumption that minimally verbal is synonymous with cognitive impairment.  (pp. 1424-1433)


From an article by Courchesne, Meilleur, Poulin-Lord, Dawson, and Soulières published in Molecular Autism in 2015, entitled "Autistic Children at Risk of Being Underestimated: School-Based Pilot study of a Strength-Informed Assessment."  Read the full article

Abstract: An important minority of school-aged autistic children, often characterized as ‘nonverbal’ or ‘minimally verbal,’ displays little or no spoken language. These children are at risk of being judged ‘low-functioning’ or ‘untestable’ via conventional cognitive testing practices. One neglected avenue for assessing autistic children so situated is to engage current knowledge of autistic cognitive strengths. Our aim was thus to pilot a strength-informed assessment of autistic children whose poor performance on conventional instruments suggests their cognitive potential is very limited. Thirty autistic children (6 to 12 years) with little or no spoken language, attending specialized schools for autistic children with the highest levels of impairment, were assessed using Wechsler Intelligence Scale for Children (WISC-IV), Raven’s Colored Progressive Matrices board form (RCPM), Children’s Embedded Figures Test (CEFT), and a visual search task. An age-matched control group of 27 typical children was also assessed. None of the autistic children could complete WISC-IV; only six completed any subtest. In contrast, 26 autistic children could complete RCPM, with 17 scoring between the 5th and 90th percentile. Twenty-seven autistic children completed the visual search task, while 26 completed CEFT, on which autistic children were faster than RCPM-matched typical children.Autistic performance on RCPM, CEFT, and visual search were correlated. These results indicate that ‘minimally verbal’ or ‘nonverbal’ school-aged autistic children may be at risk of being underestimated: they may be wrongly regarded as having little cognitive potential. Our findings support the usefulness of strength-informed approaches to autism and have important implications for the assessment and education of autistic children.


From an article by Dawson, Soulières, Gernsbacher, and Mottron published in Psychological Science in 2007, entitled "The Level and Nature of Autistic Intelligence." Read the full article.

Abstract: Autistics are presumed to be characterized by cognitive impairment, and their cognitive strengths (e.g., in Block Design performance) are frequently interpreted as low-level by-products of high-level deficits, not as direct manifestations of intelligence. Recent attempts to identify the neuroanatomical and neurofunctional signature of autism have been positioned on this universal, but untested, assumption. We therefore assessed a broad sample of 38 autistic children on the preeminent test of fluid intelligence, Raven’s Progressive Matrices. Their scores were, on average, 30 percentile points, and in some cases more than 70 percentile points, higher than their scores on the Wechsler scales of intelligence. Typically developing control children showed no such discrepancy, and a similar contrast was observed when a sample of autistic adults was compared with a sample of nonautistic adults. We conclude that intelligence has been underestimated in autistics. (pp. 857-662)


From an article by R. S. Eagle published in the Journal of Developmental Disabilities in 2002, entitled "Accessing and Assessing Intelligence in Individuals with Lower-Functioning Autism."  Read the full article

Key Quote: It is often taken for granted that the non-speaking and/or non-attentive individual with autism is non-cognitive, non-verbal and unaware, and that the severe behavioural difficulties that may render the individual ‘untestable’, denote lower intelligence. The low scores of these individuals on standard tests of intelligence appear to ‘confirm’ this supposition. In some cases, the suppositions may be true. In many cases, however, people who ‘know’ the autistic individual will suspect, or feel certain that there is much more awareness and thought than the tests have been able to access and reveal.


From an article by M. G. Edelson published in Focus on Autism and Other Developmental Disabilities in 2006, entitled "A Systematic Evaluation of the Data." Read the full article

Abstract: There are frequent claims in the literature that a majority of children with autism are mentally retarded (MR). The present study examined the evidence used as the basis for these claims, reviewing 215 articles published between 1937 and 2003. Results indicated 74% of the claims came from nonempirical sources, 53% of which never traced back to empirical data. Most empirical evidence for the claims was published 25 to 45 years ago and was often obtained utilizing developmental or adaptive scales rather than measures of intelligence. Furthermore, significantly higher prevalence rates of MR were reported when these measures were used. Overall, the findings indicate that more empirical evidence is needed before conclusions can be made about the percentages of children with autism who are mentally retarded. 


From an article by Kasari, Brady, Lord, and Tager-Flusberg published in Autism Research: Official Journal of the International Society for Autism Research in 2013, entitled "Assessing the minimally verbal school-aged child with autism spectrum disorder."  Read the full article

Key Quote: It is important not to place too much emphasis on the standard scores obtained in an evaluation. For many minimally verbal children with ASD it may not always be clear whether a specific test captures their abilities. For example, some children may participate more readily on the Leiter especially if they have had ABA type interventions in which matching is taught. The Leiter involves a series of cards to match or sequence, and some children may be more successful with this format than others. The Raven’s Progressive Matrices, also a nonverbal test, involves somewhat more complex verbal instructions; thus, its utility may be more appropriate for older or higher cognitive level children. Despite widespread use of measures on non-verbal cognition, only a few studies have observed the validity of these measures with school-aged children with autism.


From an article by Rapin, Dunn, Allen, Stevens and Fein published in Developmental Neuropsychology in 2009, entitled "Subtypes of Language Disorders in School-Age Children with Autism."  Read the full article.

Abstract: Cluster analysis of test scores on expressive phonology and comprehension of words and sentences in 7–9-year-old children with preschool diagnosis of Autistic Disorder yielded 4 clusters. Cluster 1 (N = 11): phonology and comprehension both low; Cluster 2 (N = 4): phonology low, near average comprehension; Cluster 3 (N = 40): average phonology, comprehension low to low average; Cluster 4 (N = 7): average or better phonology and comprehension. The clusters support two major types of language disorders in autism driven by impaired expressive phonology, each divisible by comprehension ability. The clusters refute a single language disorder in autism and are consonant with earlier-defined clinical subtypes.


From an article by Tager-Flusberg and Kasari, published in Autism Research in 2013, entitled "Minimally Verbal School-Aged Children with Autism Spectrum Disorder: The Neglected End of the Spectrum." Read the full article.

Key Quote: One significant barrier is the dearth of valid, reliable and appropriate means for direct assessments of this population. Instead, most studies that do report on some characteristics of their sample rely on parent report measures (questionnaires or interviews) rather than clinical testing. Standard methods for assessing even foundational cognitive or receptive language skills depend on a range of behaviors that may not be part of the repertoire of the minimally verbal child. These include the ability to develop rapport with the examiner, the motivation to comply with task demands, capacity to understand the pragmatics of the testing situation, attention or interest in the testing materials, interference from challenging behaviors, anxiety or frustration, and basic responses such as pointing skills (Tager-Flusberg, 1999). For all these reasons it is often not possible to conduct direct assessments using currently available standardized tests (but see the companion paper on current options for assessing this population; Kasari, Brady, Lord and Tager-Flusberg).


From an article by Tager-Flusberg, Plesa Skwerer, Joseph, et al., published in Autism in 2017, entitled "Conducting Research with Minimally Verbal Participants with Autism Spectrum Disorder." Read the full article.

Abstract: A growing number of research groups are now including older minimally verbal individuals with autism spectrum disorder in their studies to encompass the full range of heterogeneity in the population. There are numerous barriers that prevent researchers from collecting high-quality data from these individuals, in part because of the challenging behaviors with which they present alongside their very limited means for communication. In this article, we summarize the practices that we have developed, based on applied behavioral analysis techniques, and have used in our ongoing research on behavioral, eye-tracking, and electrophysiological studies of minimally verbal children and adolescents with autism spectrum disorder. Our goal is to provide the field with useful guidelines that will promote the inclusion of the entire spectrum of individuals with autism spectrum disorder in future research investigations.


From an article by Wilkinson and Rosenquist, published in Augmentative and Alternative Communication in 2006, entitled "Demonstration of a Method for Assessing semantic Organization and Category Membership in Individuals with Autism Spectrum Disorders and Receptive Vocabulary Limitations."  Read the full article. 

Key Quote: A recognized challenge in the field of augmentative and alternative communication (AAC) is the assessment of the individual skills and preferences of potential users of AAC. Particularly in cognitive assessment, many traditional methods are inappropriate because they require the participant to produce a verbal response and/or involve complex verbal instructions. For individuals with limited verbal forms of language, failure at such tasks is relatively uninstructive, either for revealing their functional intellectual status or for developing effective interventions.


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