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.
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:
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.
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:
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
Blogs and Articles Written by Non– or Minimally-Speaking Autistic Individuals
Books Written by Non- or Minimally Speaking Autistic Authors
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.
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.
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 Nonspeaking Autistics
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.
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 to Assist with Communication*
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.
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
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 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.
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 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.
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 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.
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.
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 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.
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.
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.
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 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.