Considerations in Self-Representation
among Non or Minimally-Speaking Autistic Individuals:
A Selected Review of the Literature
January 31, 2023
Seonghwi Bang, Ph.D
Faculty of Social Work, University of Calgary
Executive Summary
Self-expression can be verbal or non-verbal. Self-representation entails an individual’s perspectives being understood which can emerge from self-expression. Non or minimally-speaking autistic individuals with cognitive issues are at heightened risk of being misunderstood or misinterpreted. Such risks and challenges potentially impose negative impacts on individual health and well-being, thus amplifying the importance of finding effective ways to ensure self-representation.
This review offers a brief summary of selected literature addressing the self-representation of non or minimally-speaking autistic individuals with or without intellectual disabilities. Individuals may use a range of ways to represent their perspectives such as typing, recording a video clip of what they would like to share, use of signs or pictures, and/or spoken language. Examples of approaches that support self-expression are briefly offered such as augmentative alternative communication (AAC) using various types and degrees of technologies. Examples of AAC are photo-elicitation, audio-visual technologies, and ‘Autism Voices’.
Research and strategy development are invited to better elicit and/or discern self-representation among autistic individuals with non or minimally-speaking ability and/or intellectual disabilities. Practical advice for supporters includes taking time, forging relationship, and carefully observing an individual’s needs, perspectives and wishes. The literature advocates for knowledge development and training in communication strategies and alternative means of communication among community members such as health care providers. Research that integrally engages the perspectives of non or minimally-speaking autistic is recommended.
Introduction
Communication consists of a variety of verbal (e.g., language and speech), nonverbal (e.g., gestures, facial expressions, various other forms of expression) (Denworth, 2018), and visual (e.g., imagery, symbols) cues to convey information to another person or group. Correspondingly, autistic individuals may express their opinions and thoughts through various ways such as typing, recording a video clip of what they would like to share, showing signs, using pictures, and/or using spoken language. Due to the interpretative aspect of communication, use of nonverbal and visual communication can incur greater risk of potential misunderstanding or misinterpretation. Finding effective ways for autistic individuals’ viewpoints and preferences to be understood emerges as critically important in ensuring their perspectives are ascertained and respected.
No statistical data were found that indicate the proportion of autistic people in Canada who are non or minimally-speaking. We can presume the approximate prevalence of the minimally or non-speaking autistic population from studies in other countries. Rose, Trembath, Keen & Paynter (2016) estimate 25 to 35% are minimally speaking in Australia. Tager-Flusberg & Kasari (2013) and Rock and Becker (2021) estimate that the prevalence of non-speaking autistic persons is around 30% of the autistic population. Reliability of prevalence data reflecting the non and minimally-speaking autistic population may be questionable, reportedly due to: (1) the broadening of the diagnostic criteria of autism, (2) more speaking individuals are now diagnosed with autism, and (3) earlier diagnoses and greater access to more effective early interventions may significantly improve spoken language and communication skills in the autistic population (Tager-Flusberg and Kasari, 2013). Gorlin, McAlpine, Garwick, and Wieling (2016) indicate that non or minimally-speaking autistic individuals’ communication barriers worry families as they consider their loved one’s needs and vulnerability in areas such as healthcare. According to Gorlin and colleagues (2016), parents of non and minimally-speaking autistic children may have difficulty understanding the health needs of their child when ill. Gorrindo, Williams, Lee, Walker, McGrew & Levitt (2012) examine parental reports of autistic patients with gastrointestinal dysfunction, and discuss the importance of understanding the relationship between health conditions and communication barriers. Parents report that the assessment of discomfort can be particularly difficult for non-speaking autistic individuals, and pain may be communicated through behaviour (Kopecky, Broder-Fingert, Iannuzzi & Connors, 2013).
Non or minimally speaking individuals may have difficulty self-representing their perspectives (Chapman & Veit, 2020). Self-advocates indicate the importance of being respected in one’s own ways of communication. Wood (2020) identifies prejudice toward autistic individuals which may impose bias rather than sufficiently working to apprehend what an autistic person is conveying. Notwithstanding instances of helpful support, autistic children are noted to be at risk of being ignored or misunderstood. Unique ways of communicating and being such as making sounds and tapping to represent feelings, for instance, may be viewed as “mak(ing) noises”. In Wood’s study (2020), a non-speaking autistic child reports that he had to be in speech therapy whether or not he wanted to be, and he was treated as “noise and disorder” when in fact he was communicating through sounds and tapping.
Wood’s study emphasizes the importance of taking time, forging a relationship, and carefully observing and assessing the needs, perspectives, and wishes of the autistic individual. Considering health care, several authors suggest that health care personnel (and extending this focus, others) need greater knowledge about and training in communication strategies and the use of alternative means of communication (Barber, 2017; Kopecky, Broder-Fignert, Iannuzzi & Connors, 2013; Morris, Greenblatt & Saini, 2019; Shaw et al., 2022). Education to the community needs to include core knowledge about autism and ways to advance/implement accessible language and communication (Nicolaidis et al., 2015) such as the use of picture charts (Thompson, Tielsch-Goddard; 2016).
Engaging Autistic Individuals to Represent their Perspectives and Opinions
Research and strategy development to promote self-representation are needed for individuals with non or minimally-speaking ability and/or intellectual disabilities. However, there limited studies involving autistic individuals with intellectual disabilities. Involving the perspectives of this population in research, program development and community activities not only upholds their human rights, but also could decrease barriers to quality of life.
Of the limited studies addressing strategies to self-advocate for individuals among the range of speaking and intellectual disabilities (Boardman, Bernal, & Hollins, 2014; Goldberg, & Kleintjes, 2022), suggestions are offered to better represent and understand the perspectives of people with complex communication needs or significant challenges in speech (e.g., Heyworth, Chan, & Lawson, 2022; Courchesne, Tesfaye, Mirenda, Nicholas, Mitchell, Singh, Zwaigenbaum, & Elsabagh, 2022; Shane, Laubscher, Scholosser, Flynn, Sorce & Abramson, 2012). Examples of approaches are briefly described below.
Supported Typing/Facilitated Typing
Supported typing – known as facilitated communication (FC) – was introduced by Crossley (1994) as a communication training method supported by a facilitator, for non-speaking individuals with disabilities. Using this approach, a facilitator physically supports a trainee to type letters/words to express what the trainee wants to say until the trainee is able to type on his/her own. It was used as a way to facilitate communication, but became controversial due to concerns that the facilitators may be teaching trainees to convey the facilitator’s perspective, rather than their own (Schlosser, 2014). According to Heyworth et al. (2022), arguments against this approach reflected concerns about the method’s validity. The American Academy of Child and Adolescent Psychiatry (2008) and the American Academy of Pediatrics (2020) support the concern that FC is not a scientifically valid approach for autistic individuals. The American Speech-Language-Hearing Association (2018) even indicates “negative and harmful consequences in that FC has been associated with significant preventable harms arising through false allegations of sexual abuse” (https://www.asha.org/policy/ps2018-00352/).
Augmentative and Alternative Communication (AAC)
AAC is used to either facilitate or supplement communication (Lorah, Holyfield, Griffen, & Caldwell, 2022). AAC can be used with sign language or equipment/devices ranging from low- to high-tech applications, including laminated paper, pictures, and computerized technology (Courchesne et al., 2022). The method has been developed along with various materials and technologies. In the 1980s and 90s, a wide variety of AAC was developed, ranging from no-tech to high-tech AAC (Shane, Laubscher, Scholosser, Flynn, Sorce, & Abramson, 2012). High-tech AAC ranges from single message devices to complex and highly flexible voice communication aids (VOCAs) (Goldbart & Caton, 2010; Shane et al., 2012).
Different approaches such as Participant-Driven Photo-Elicitation, Audio Visual Technologies and eclectic approaches like Autism Voices, as outlined below, supplement communication using different visual and/or audio supports to augment communication in an effort to capture the perspectives of individuals with autism.
Participant-Driven Photo-Elicitation
Photo-elicitation is a qualitative visual research technique (Danker, Strnadova & Cumming, 2017). Researchers may identify photographs that are considered to be meaningful to participants. Alternatively, participants may take photographs and can elaborate on their meaning using words, text, or additional pictures during interviews (Kurtz & Wood, 2014; Mandleco, 2013). This is called participant-driven photo-elicitation (PDPE) (Danker et al., 2017). Danker et al. (2017) examined student well-being from the perspectives of autistic individuals with intellectual disabilities, parents, and teachers, using PDPE. Danker et al. (2017) offered information sessions to autistic students with intellectual disabilities at individual meetings with students about photographing protocols. After the students completed taking photographs, the researchers and students discussed what photographs represents. Dander et al. (2017) note that “the use of PDPE empowers students with ASD and engages them in various aspects of the research process, helps build essential skills such as social skills and self-awareness, and most importantly enables their authentic voices to be heard” (p. 48).
Audio-Visual Technologies
Audio-visual technologies such as MeCalendar (Wilson, Brereton, Ploderer, Sitbon & Saggers, 2017) and MyWord (Wilson, Brereton, Ploderer & Sitbon, 2018) can be used as a catalyst for increasing confidence in the expression of interests and competencies. This approach invites person-led appropriation based on personal strengths and interests, and is noted to support autistic individuals’ competencies. Autistic individuals contribute to create their own application, using audio-visual technologies (i.e., MeCalendar and MyWord) with their own pictures and videos that are reflective of their interests and perspectives. According to Wilson et al. (2017) and Wilson et al. (2018), audio-visual technologies can increase one’s confidence in the expression of interests and competencies. The approach entails customizing an open-ended implementation, which enables the individual to document daily activities of interest (named MeCalendar).
Autism Voices
Courchesne, Tesfaye, Mirenda, Nicholas, Mitchell, Singh, Zwaigenbaum & Elsabbagh (2022) developed the Autism Voices protocol to capture first-person perspectives on barriers and facilitators in daily life of autistic youth with a range of speaking ability (minimal to able to speak) and/or intellectual disability. Autistic participants’ caregivers/parents were invited to tailor the questions to the participant’s preferred methods of communication prior to meeting with the autistic youth, and questions were delivered according to preferred communication methods (e.g., AAC device, writing, drawing, texting, using emojis, choosing or pointing at pictures, speaking) (Courchesne et al., 2022).
General Guidance: Toward Greater Opportunity for Self-Representation
In a Canadian study entitled, “Autistic students’ views on meaningful inclusion: A Canadian perspective”, Lebenhagen (2022) indicates that autistic students advocate for accepting them as they are, flexible opportunities, understanding their autistic characteristics and supporting self-advocacy in the aim of more favorable experience. The autistic students in the study preferred to use non-speaking modes of communication because typing and drawing helped to improve the clarity of their messaging and minimized feelings of stress and anxiety.
Nicolaidis, Raymaker, Ashkenazy, McDonald, Dern, Baggs, Kapp, Weiner & Boischlair (2015) conducted interviews with autistic adults and service providers in healthcare settings. The results demonstrate the importance of understanding autistic characteristics and working with the individual to enhance success in healthcare interactions. Shaw, Davis & Doherty (2022) report that non-speaking autistic patients may need to rely on AAC or proxy communication via caregivers. They stress that understanding autistic characteristics, taking time to communicate with autistic individuals, and having multiple methods to engage, result in better healthcare support.
Boardman et al. (2014) identify the importance of clarification and simplification in language or information, and checking that the modified version is understood by the individual. When engaging with an individual with communication difficulties, Boardman et al. (2014) suggest using short and simple sentences with personally familiar words, avoiding jargon, and allowing time for the individual to process information. “Careful attention to body language, and showing respect, warmth and patience are even more important” for individuals with intellectual disabilities than with individuals without intellectual disabilities (Boardman et al., 2014, p, 30). Donaldson and colleagues argue that individuals should be able to choose their own communication methods as a form of communication autonomy. Rentenbach, Prislovsky, and Gabriel (2017) further offer practical guidance, based on Rentenbach’s own experience as an autistic person: (1) presume competence even when you don’t see or hear it yet, (2) smile, (3) listen, (4) wait, and (5) make room for non-speaking communication.
Self-advocacy support activities can be helpful to develop skills or ways to represent oneself. Advancing self-advocacy practices requires heightened knowledge of: self, one’s rights, communication, and leadership (Test, Fowler, Wood, Brewer, & Eddy, 2005). In a recent scoping review, Schmidt, Faieta, & Tanner (2020) highlight the benefits of self-advocacy education for individuals with intellectual disabilities, including increased confidence to talk about needs, seek help and recognize appropriate support; and improved self-representing skills. Schmidt et al. (2020) further note that self-advocacy skills can be developed by interactive multimedia education, peer-led group intervention, writing interventions, workplace modifications and specific healthcare-related programs that prioritize needs and promote communication with health care providers and ability to manage information to promote care services. Such self-advocacy education may increase confidence and improve self-representation skills among non- or minimally-speaking autistic individuals and/or those with intellectual disabilities.
In summary, we have reviewed self-representation considerations for non or minimally-speaking autistic individuals, including those with intellectual disabilities. Unfortunately, relatively few studies about self-representation significantly engage self-advocates (de Haas et al., 2022; Goldberg, & Kleintjes, 2022; Schmidt et al., 2020). Deeply listening to, and engaging with, individuals, and developing individually tailored tools to support communication, require intentionality and skill development. Such advancement is needed to better address communication barriers and gaps, and thus, to better access these individuals’ perspectives and preferences.
Emerging Key Messages
This review identified the following key messages.
1. A substantial proportion of autistic people are non or minimally speaking; however, the prevalence of this population in Canada remains undetermined.
2. The perspectives of many of these autistic people are not well-understood.
3. There is a general lack of awareness about non or minimally-speaking forms of communication.
4. Although studies have increasingly advocated for first-person perspectives, there remains a lack of studies guiding approaches to optimize self-representation for non or minimally-speaking individuals.
5. Intentional, concerted effort and ingenuity are needed to better understand the perspectives of non and minimally-speaking autistic individuals with intellectual disabilities.
6. More research is needed including co-designed research with autistic non or minimally-speaking individuals and their caregivers to elicit needs and perspectives.
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