Written by Tim Chan, February 2022
It is well known that Autism identification has increased in recent years with the US Center for Disease Control estimating a prevalence of 1 in 44 children (CDC, 2021). In Australia, the estimated figure for Autistics was 164,000 (ABS, 2015) or roughly 1 in 145. These figures are likely under-represented, at least in part due to the considerable number of Autistic adults who were not diagnosed as children, or who self-identify but have not been able to access formal diagnosis.
Communication differences are a core characteristic of Autism. Whether they experience challenges in generating traditional speech and language or not, many Autistics utilise their strengths in visual thinking and auditory memory to communicate, and may communicate most effectively via visual means, gestures, signs, diagrammatic representations, and alternative and augmentative communication or AAC (Koegel, et al., 2020), including non- electronic communication aids or NECAS (Scope Australia, 2020). Indeed, many Autists employ multi-modal communication, utilising a broad range of communication strategies to meet their context and needs across time. Recommended AAC methods usually include Picture Exchange Communication System (PECS), language boards, alphanumeric keyboards and typing devices, and electronic symbol- and text-supported communication applications (like Proloquo2Go).
Approximately 25 per cent of Autistics do not use speech at all to communicate (Wan et al., 2011). Communication for these members of the Autistic community, often classified as people with complex communication support needs (CSN), may be non-conventional and diverse.
Reframing Autism argues that Autists with CSN constitute a unique, intersectional group which faces specific areas of discrimination, stigmatisation, and prejudice.
Some of the most pressing issues concerning Autists with CSN include that they:
Some Autistics with CSN have testified to the power of particular AAC methods to foster their independent communication, including Rapid Prompting Method or RPM (Chen et al., 2012) and Partner Assisted Typing (PAT), also known as Facilitated Communication or FC (Biklen, 1990; Chan & Chan, 2019; Kedar, 2012; Rubin, 2021; Sequenzia, 2021). These types of AAC, however, have been rejected by many, including allied health professionals, as controversial, and are rarely recommended or offered to Autistic individuals with CSN.
Reframing Autism argues that all AAC methods should be regarded as effective and valuable options to support communication, providing that they are used to foster the autonomy, citizenship, and empowerment of the communicator.
In accordance with the Universal Declaration of Human Rights (article 19, UDHR, United Nations, 1948), the Convention of the Rights of Persons with Disability (article 21, CRPD, United Nations, 2008), the International Covenant on Civil and Political Rights (article 19.2, CCPR, United Nations, 1976), and the Convention on the Rights of the Child (articles 12 and 13, CRC, United Nations, 1990), to all of which Australia is a signatory, Reframing Autism argues that all people are entitled to access their preferred means of communication. This access is an inalienable and basic human right, which allows self-expression and asserts the individual’s prerogative to give and receive information through all forms of communication, including accessible formats and technology, AAC, Braille, and sign language. We note that under the CRPD, discrimination is not only defined as active discrimination, but is inherent in the denial of reasonable accommodations or in the exclusion or restriction of fundamental freedoms, of which communication is one.
Denying an Autistic individual access to their preferred means of communication is thus a human rights violation.
Reframing Autism asserts that all forms of communication should be respected and accepted as avenues for self-expression. Additionally, all AAC methods are legitimate and valuable opportunities to provide communicative competence, and to allow all communicators to achieve autonomy, citizenship, and empowerment. We endorse the right of every individual to have the opportunity to explore all AAC methods so as to determine their unique communication needs and preferences.
Diverse communication, including AAC, must be acknowledged as legitimate and respected as valid.
Due to neurological, developmental, and motor resonance differences (e.g., McCleery et al., 2013), some Autistic individuals do not acquire speech, displaying innate preferences for visual and other means of communication (I-ASC, 2020, testimony section). Having not attained speech as a reliable means for communication, often despite intensive intervention and speech therapy, individuals with CSN exercise alternative pathways for communicating which reflect their unique communicative preferences (I-ASC, 2020, testimony section; Welch, 2019).
Unfortunately, AAC users (both within and outside of the Autistic community) have been systemically and significantly disadvantaged by the dominant culture of speech, which is the culturally accepted, preferred, and privileged mode of communication.
For nonspeaking Autists with CSN, it is distressing and invalidating to have their non-speech communication dismissed and nullified as failing to comply with prevailing expectations of speech as the “gold standard” for communication (I-ASC, 2020).
The pervasive assumption accompanying this perspective is that AAC users and non-traditional communicators lack the capacity to communicate (e.g., Brady et al., 2012): that is, culturally we are likely to assume (wrongly) that when someone does not speak, they have nothing to say, or nothing of worth to say. This view has been – and should continue to be – challenged by research and by the direct testimony and evidence of nonspeaking Autistics globally (e.g., Chan & Chan, 2019; Higasheda, 2013; Kedar, 2012, 2018; Mukhapadyay, 2021; Peña, 2019; Rubin, 2021; Sequenzia, 2021).
Many individuals with CSN, including Autistics and those with Cerebral Palsy, make use of or rely upon FC and RPM for communication. FC is a process in which the communicator is physically supported or assisted by a facilitator, also called a communication partner (Crossley, 1994; Biklen, 1990, 2000). Such physical support varies considerably depending on the FC user’s needs, but might involve support at the hand, wrist, or elbow, or touch on the shoulder or back. The stated purpose of FC is that with practice and increased confidence, physical support could be withdrawn. The original aim of FC, then, was to encourage individuals towards independent communication, fading physical support as soon as appropriate.
However, FC and RPM users and their communication partners have faced a barrage of negative responses from many sources including academia, peak bodies (e.g., American Speech-Language-Hearing Association, 2018; ISAAC, 2014), and allied health practitioners.
The mainstream rejection of FC and RPM primarily stems from research in the 1990s which sought to ascertain the authenticity of FC-generated communications, using strict, quantitative, statistical, experimental control conditions. The issue of validity pertains to whether the typed output produced via FC represents the thoughts or communicative intentions of the FC user or is manipulated (consciously or unconsciously) by their communication partner who is “facilitating”.
Quantitative research (around 40 studies, conducted mainly in the 1990s) into FC, undertaken in strict clinical, experimental contexts, found that FC users seldom produced the correct responses to stimuli, with results indicating that facilitator influence coloured and shaped responses (Green, 1994; Mostert, 2001). On the basis of these studies, opponents of FC have decried its validity and worked to ban its use altogether, asserting an individual’s right not to be manipulated (e.g., Hemsley et al., 2018).
But it is vital to note that FC “failed” under strict protocols and controlled experimental designs. Such quantitative studies typically ignored or negated factors that would impact on the participants (both the FC user and their communication partner), and the experimental conditions themselves disadvantaged the participants (Williams, 2021).
By contrast, a larger number of qualitative studies (more than 100), mostly conducted after the 1990s (Cardinal & Falvey, 2014), considered the additional challenges individuals with CSN might face in being “tested” in such formal qualitative test conditions, including sensory overload, high levels of anxiety, and compromised motor coordination or dyspraxia (Biklen, 1990), all of which would add to their cognitive load (Cardinal & Robledo, 2012). These qualitative studies argue that the earlier quantitative studies produced less-than-optimal communication performance, at least in part due to the challenges of unfamiliar test situations (Cardinal & Falvey, 2014).
Research designs mitigating the effect of these challenges (including the use of naturalistic settings, establishment of genuine rapport between researcher and FC users, and additional commitment to improving the practice of FC), have affirmed authorship of FC users (Cardinal & Falvey, 2014). In fact, authenticity of the FC user’s authorship has repeatedly been demonstrated when research designs respect the neurological processing and lived reality of nonspeaking Autists (e.g., Bernardi & Tuzzi, 201; Cardinal, Hanson & Wakeham, 1996; Grayson et al., 2012; Jaswal et al., 2020; Niemi & Karna-Lin, 2002; Sheehan & Matuozzi, 1996; Tuzzi, 2009; Weiss et al., 1996).
For Reframing Autism, however, the most compelling evidence is from Autistic non- speakers themselves, who have used FC or RPM and later become independent communicators after prolonged FC use.
These include Lucy Blackman (Blackman, 1999), Sue Rubin (Bedingfield, et al., 2004) and Peyton Goddard (Goddard & Goddard, 2012). The voices of the many Autistics who successfully use physically supported communication are a vital – and distressingly under-recognised – source of compelling evidence for the potential of FC. Reframing Autism notes our strong objection that Autistic nonspeaking voices have been erased and silenced in the FC and RPM debates.
In listening to Autistic stories, Reframing Autism acknowledges that for FC users and their families, this method has provided a mode of communication, without which many non-speakers would be denied a voice.
FC and RPM have the potential to enable connection with others and engagement with the world for many non-traditional communicators (personal communications, Cameron & Lorraine Rodrigues, 2009-2019; I-ASC, 2020, testimony section; Rubin & Rubin, 2005).
Whilst debate surrounding the complex issues of physically supported communication is likely to remain (Stock, 2011), Reframing Autism considers the categorical invalidation of FC and RPM as reductive, unevidenced, ableist, and a violation of human rights.
We argue that the current dismissive approach to FC is oversimplified, unsupportive of the Autistic community, and by and large unsubstantiated by qualitative research evidence.
Reframing Autism asserts the right for the members of the Autistic community with CSN to use a method of communication that aligns with their preferred style of language processing.
Reframing Autism does not deny that abuses and misuses of FC are possible. However, we argue that further research is needed to promote understanding and acceptance of diverse communication.
For further information, explanation and justification for our position on FC, please see our open-access, peer-reviewed perspective article, “Presuming Autistic Communication Competence and Reframing Facilitated Communication”, in Frontiers in Psychology.
Most research on Autistic communication originates from a deficits-based model which unquestioningly privileges speech as the normative (and preferred) criterion for communication. This approach has been exacerbated by a tendency to pathologise Autistic deviations from speech production and related areas, including Autistic differences in pragmatics and prosody (e.g., Wan et al., 2011). Unfortunately, such research has been used to inform program implementation for “fixing” these anomalies (e.g., Chenausky et al., 2016; Goods et al., 2016; Wan et al., 2011). Rarely is Autistic communication valued as organic, valid, and legitimate.
Reframing Autism advocates that further research into visual and non-speech communication modes is crucial to provide genuine alternatives that will meet individual communication preferences and needs. Such research will be most successful and helpful to the Autistic community if it is conducted in partnership with Autistics in co-production, co-design, and implementation roles.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.