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Facilitated Communication
The content of this document is OFFICIAL. Please note: The research and literature reviews collated by our TAB Research Team are not to be shared external to the Branch. These are for internal TAB use only and are intended to assist our advisors with their reasonable and necessary decision-making. Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on access or planning matters, they are to call the TAPS line for advice. The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of these matters
Research question: What is the evidence base for Facilitated Communication? What are the risks or harms associated with Facilitated Communication? How common is Facilitated Communication in Australia? Date: 4/2/2021 Reviewed: 14/12/23 Requestor: s47F - personal privacy Endorsed by: s47F - personal privacy Researcher: s47F - personal privacy Cleared by: s47F - personal privacy
- Contents Facilitated Communication …………………………………………………………………………………………… 1
- Contents ……………………………………………………………………………………………………….. 1
- Summary ………………………………………………………………………………………………………. 2
- What is Facilitated Communication? ………………………………………………………………….. 2
- Evidence ……………………………………………………………………………………………………….. 3 4.1 Clinical Guidelines ……………………………………………………………………………………….. 5
- Facilitated Communication in Australia ………………………………………………………………. 6
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5.1 Providers ……………………………………………………………………………………………………. 6 5.2 Position statements ……………………………………………………………………………………… 8 6. References ……………………………………………………………………………………………………. 9
- Summary Facilitated Communication is a communication and training technique for people with complex communication needs. There is substantial evidence indicating that the technique is not effective. No systematic reviews have found good quality intervention studies to support the efficacy of Facilitated Communication. There is evidence of significant risks and harms associated with its use. Some clinical guidelines recommend against its use and no clinical guidelines were found allow or recommend its use. While Facilitated Communication is widely opposed by professional groups and researchers, some advocates still pursue research and dissemination. They often cite low quality, anecdotal or qualitative evidence in support of Facilitated Communication. Some services providers offer Facilitated Communication in Australia, though the extent of its use is difficult to determine. RES 327 Rapid Prompting Method contains further detail on Facilitated Communication and its relation to other communication methods that require facilitation.
- What is Facilitated Communication? Facilitated Communication is technique aimed to support people with complex communication needs to communicate in written language. A facilitator directly supports the user’s hand, arm or shoulder to encourage the user, point to letter or type messages on a keyboard, tablet or letterboard. It can also be used to assist users to handwrite messages with pen and paper. The facilitator may provide emotional, communication and physical supports in the course of the practice (Heyworth et al, 2022; Cardinal & Fulvey, 2014; Speech Pathology Australia, 2012). Facilitated Communication has been used by both adults and children with complex communication needs restricting their ability to communicate and participate freely and independently in community. The method was originally developed for a person with cerebral palsy (Tostanoski et al, 2014). However, most research focusses on autistic children or adults. The website of the Anne McDonald Centre in Melbourne states: Use of facilitated communication is not restricted to any specific age or any diagnostic group. It’s been used successfully by people with diagnoses including autism, Down syndrome, intellectual disability, cerebral palsy and acquired brain damage (Anne McDonald Centre, n.d. c).
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Facilitated Communication is also referred to as supported typing, assisted typing or hand- over-hand technique. The term may also be used as a generic term for different varieties of facilitator-dependent communication tools such as Rapid Prompting Method or Spelling to Communicate (Tostanoski et al, 2014; Speech Pathology Australia, 2012; for further information refer to RES 327 Rapid Prompting Method). Its proponents refer to it as a form of augmentative and alternative communication (Cardinal & Fulvey, 2014). However, critics suggest that this is a misnomer because Facilitated Communication does not produce independent communication (Beals, 2022). 4. Evidence There is a widespread consensus among professionals that Facilitated Communication is not evidence-based and that it can lead to significant harms (Raising Children, 2022; Simmons et al, 2021; Whitehouse et al, 2020; Steinbrenner et al, 2020). It is often assumed in the literature that Facilitated Communication has been discredited or should be considered a pseudoscience (Simmons et al, 2021; Steinbrenner et al, 2020; ASHA, 2018; Hemsley et al, 2018b). Serious risks and harms associated with Facilitated Communication include: • violating human rights of a person with disability • wrongly identifying preferences of a person with complex communication needs • generating false statements including false allegations of abuse • preventing access to better communication tools or learning environments • encouraging more passive communication • cost in time and money for no improvement in communication (Raising Children, 2022; Simmons et al, 2021; ASHA, 2018; ISAAC, 2014).
From the 1990s, researchers began to assess Facilitated Communication for effectiveness and authorship. Simmons et al describe typical controlled study methods: The facilitator and the user are shown the same image and then asked to type the name of the object. Invariably, the user answers correctly. Then, the facilitator and autistic individual are shown different images, but the facilitator believes they have been shown the same object. Invariably, the user answers incorrectly. In a particularly devastating study run by Wheeler and colleagues with 12 individuals with autism and nine facilitators in over 180 trials, the individual with autism did not get a single image correct (2021, p.12). Since this early research, high quality intervention studies consistently point to lack of efficacy: extensive reviews have repeatedly concluded that in well-controlled experiments, the preponderance of the evidence shows that FC messages originate from facilitators rather than from the people who receive facilitation or from people with disabilities who
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are equally able to provide the messages without the help of the facilitator (Singer et al, 2014, p.180). The most recent systematic review (Helmsley et al, 2018) found no intervention studies that could establish effectiveness of Facilitated Communication or confirm that messages generated using Facilitated Communication were primarily produced by the person with communication needs. Proponents respond to the evidence in a few standard ways. They argue: • Studies unsupportive of Facilitated Communication adopt methods which are not designed for people with complex communication needs, especially autistic people. • Researchers presume the subject’s communicative incompetence and set them up for failure. • Many qualitative and descriptive studies of Facilitated Communication confirm authorship. • Studies using sophisticated technology such as eye tracking devices confirm authorship. • Testimony of Facilitated Communication users who have progressed to independent typing validates the technique (Heyworth et al, 2022; Chan, 2022; Cardinal & Falvey, 2014; Wilson et al, 2014).
These arguments have been largely responded to in previous studies (Beals, 2022; Simmons et al, 2021; Helmsley et al, 2018; Singer et al, 2014; Schlosser et al, 2014; ASHA, 2018; ISAAC, 2014). Proponents of Facilitated Communication explain the consistent negative results in controlled studies by suggesting artificial and stressful testing conditions cause heightened anxiety in the subjects. In response, researchers point out that heightened anxiety does not appear to be a problem in studies supporting Facilitated Communication authorship, even when these studies occur in artificial situations and use novel technology such as eye tracking equipment. Simmons et al argue that “the conditions [of controlled studies] must assuredly be less stressful than the conditions that FC proponents often place users, such as presenting at the United Nations or at academic conferences or even producing documentary films” (2021, p.16). There is a large peer reviewed literature of qualitative studies supporting the use of Facilitated Communication. Cardinal & Fulvey (2014) point out that after the initial phase of controlled studies, most researchers have focussed on qualitative methods. They argue this can be explained by researchers coming to understand that qualitative methods are best suited to investigating Facilitated Communication. Heyworth et al (2022) suggests that qualitative studies have more explanatory power than randomly controlled trials. However, the studies
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referred to often assume the authenticity and effectiveness of Facilitated Communication and investigate its use from the perspective of Facilitated Communication users and their family (Beals, 2022; Simmons et al, 2021; Helmsley et al, 2018; Singer et al, 2014). Proponents also point to the number of Facilitated Communication users who have been able to transition to independent typing or other forms of communication (Heyworth et al, 2022; Cardinal & Fulvey, 2015). They suggest that testimony from these former users validates the technique. In response, Singer et al (2015) suggest that there is not enough information about these cases to determine whether Facilitated Communication assisted the user to gain independent communication. The presence of these cases does not rule out the possibility that evidence-based forms of AAC or communication training could have enabled faster or more effective communication.
4.1 Clinical Guidelines Three guidelines were found that recommend against the use of Facilitated Communication. No guidelines were found that recommend its use. Speech Pathology Australia – Augmentative and Alternative Communication Clinical Guideline Speech Pathology Australia’s 2012 Augmentative and Alternative Communication Clinical Guideline states that Facilitated Communication is “an approach with little supportive evidence and a preponderance of evidence that contraindicates its use, and its use is not recommended” (Speech Pathology Australia, 2012, p.29). The guideline also recommends: Speech pathologists have an ethical responsibility to inform their clients and families of the lack of supportive evidence and evidence of known harms associated with FC in the literature, including the harms of subconscious facilitator influence and false allegations of sexual abuse, if FC is discussed. Furthermore, speech pathologists supporting people who use FC cannot assume that messages communicated by FC are the person’s own messages. Speech pathologists have an ethical responsibility to: (a) assess whether the communication is the person’s own communication or has been influenced by the facilitator, and (b) explore all AAC system access methods (including direct and indirect access) and strategies that allow the person to communicate independently. In keeping with the principle that AAC includes all and multi-modal forms of communication, all of the person’s methods of communicating must be taken into account, including extant forms, such as, facial expression, body movements, and vocalisations (Speech Pathology Australia, 2012, pp29-30). The clinical guideline is no longer publicly available. Policy related to speech pathology practice or augmentative and alternative communication no longer mentions Facilitated Communication or its variants (Speech Pathology Australia, 2023a; 2023b; 2021).
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Autism CRC – National guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia Autism CRC published the National guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia (National Guidelines) in 2022. It was approved by the National Health and Medical Research Council. The National Guidelines do not mention RPM, Facilitated Communication, Spelling to Communicate or associated communication strategies. However, recommendation 27.4 states Supports focussing on how the child communicates should not … Have a communication partner use a child’s augmentative communication system (e.g., pictures, typing), or physically guide the child’s use of the communication system, to convey a message on the child’s behalf (Trembath, 2022, p.66). Scottish Intercollegiate Guidelines Network – Assessment, diagnosis and interventions for autism spectrum disorders Citing little evidence of effectiveness, substantial evidence that Facilitated Communication is ineffective and significant risk of harm, the Scottish Intercollegiate Guidelines Network’s 2016 Assessment, diagnosis and interventions for autism spectrum disorders national clinical guideline makes the following recommendations: 6.38 Facilitated communication should not be used as a means to communicate with children and young people with ASD (p.27). 7.8 Facilitated communication should not be used as a means to communicate with adults with ASD (p.29). 5. Facilitated Communication in Australia Facilitated Communication is used in Australia, though its prevalence is difficult to determine. Supports may be provided informally or training may be provided to family, carers or support workers. Few providers were identified (refer to 6.1 Providers for details). Few organisations in Australia openly endorse or oppose Facilitated Communication (refer to 6.2 Position Statements for details). Due to terminological variability, it is possible that some people are not aware they are using Facilitated Communication. For example, a recent media release from NSW Education Department describes the communication methods of a young autistic man, which suggest that the man’s parents developed a form of facilitated communication independently of established forms of the technique (Department of Education, 2022; Boynton, 2022).
5.1 Providers Few providers were identified (refer to Table 1 Practitioners of Facilitated Communication in Australia for the list of providers). This may be due to providers not advertising use of the technique or describing the technique differently. Facilitated Communication may be:
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e described rather than named (“supported typing”, “assisted typing”, “nand-over- hand’ etc.)
e delivered under other names or closely related variants (Spelling to Communicate,
Rapid Prompting Method)
e practiced as part of other daily supports, therapies or behaviour supports
e used by parents or carers informally
e left off public or commercial material to avoid controversy.
On the use of some variants of Facilitated Communication in Australia, refer to RES 327 Rapid
Prompting Method.
Table 1 Practitioners of Facilitated Communication in Australia
Organisation
NDIS
Reg.
Services
Qualifications
State
Currently Active
Anne McDonald | No Facilitated None listed. VIC Unclear. The Centre Communication | Multiple provider’s home including training | therapists. page states they and workshops, are not currently Speech therapy taking appointments and other AAC (Anne McDonald tools. Centre, n.d. a), however there is no sign whether they have stopped delivery of training and other services (Anne McDonald Centre, n.d. b). SpiralDance No Speech Therapy, | Certified QLD Yes. Most of the (Alice Owen) Dance Therapy, | Practicing links on the Facilitated Speech providers web page Communication | Pathologist; are broken. training Certificate in However, she has Dance recently facilitated a Movement workshop with Therapy; Queensland Graduate Facilitated Diploma Communication Inc.
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Movement and in July 2023 Dance (QLDFCT, 2023)
FCT Qld Inc No Training and None listed. QLD Yes. Workshops in Facilitated Communication and other topics.
Beacon Support Yes Multiple services. None listed. QLD Yes. They use the Multiple term “facilitated therapists. communication” in the context of providing other supports though it is possible they are referring to more generic communication supports (Beacon Support, n.d.).
5.2 Position statements Reframing Autism Reframing Autism is an Australian not-for-profit advocating for Autistic people, their families and allies. Reframing Autism supports the use of RPM, Facilitated Communication and related methods from a position of autistic self-advocacy: 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 (Chan, 2022). Communication Rights Australia Communication Rights Australia is an advocacy group for people with high communication needs. The group has previously endorsed Facilitated Communication by publishing testimonials of Facilitated Communication users (Chan, 2012). The group seems to be no longer operating due to loss of funding.
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Association for Behaviour Analysis Australia The Association for Behaviour Analysis Australia (ABAA) opposes the use of Facilitated Communication in their 2019 position statement: The Association of Behaviour Analysis Australia (ABA Australia) has considered the available scientific evidence related to Facilitated Communication, Rapid Prompting Method, and Spelling to Communicate. The scientific literature does not support the use of these techniques. The damage caused by these techniques includes, at a minimum, loss of opportunity for independent communication and, in some cases, extreme family trauma (e.g., false claims of sexual abuse). These techniques have not been demonstrated to empower communication from the person being facilitated and are not forms of Alternative or Augmentative Communication. The official position of the ABA Australia is that these techniques violate human rights as defined by the United Nations Convention on the Rights of Persons with Disabilities (ABAA, 2019, p.1). Victorian Advocacy League for Individuals with Disability The Victorian Advocacy League for Individuals with Disability (VALID) is a Victorian based advocacy organisation for people with intellectual disability (VALID, n.d.). VALID opposes the use of Facilitated Communication in its 2012 position statement: VALID does not support or endorse the use of Facilitated Communication as a form of therapy, communications system, or as a means of making important life decisions. In particular, communication arising from the use of Facilitated Communication should not be used to confirm or deny accusations of abuse, neglect, or other crimes, and should not be used to make decisions concerning guardianship or administration, treatment, diagnosis, housing, or custody (2012, p.2). 6. References American Speech-Language-Hearing Association. (2018). Facilitated communication [Position Statement]. https://www.asha.org/policy/PS2018-00352/ Anne McDonald Centre. (n.d. a). Home. https://annemcdonaldcentre.org.au/ Anne McDonald Centre. (n.d. b). Professional Training. https://annemcdonaldcentre.org.au/our-services/professional-training/ Anne McDonald Centre. (n.d. c). Frequently Asked Questions. https://annemcdonaldcentre.org.au/faq/ Association of Behaviour Analysis Australia. (2019). Position Paper on Facilitated Communication and Rapid Prompting Method. https://auaba.com.au/resources/Documents/Position%20Paper%20FC%20RPM ABA% 20Australia.pdf
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Beacon Support. (n.d.). Facilitated Communication. https://www.beaconsupport.com.au/ndis- service-provider/facilited-communication-in-home-care/ Beals, K. (2022). Why we should not presume competence and reframe facilitated communication: a critique of Heyworth, Chan & Lawson. Evidence-Based Communication Assessment and Intervention, 2(16), 66–76, https://doi.org/10.1080/17489539.2022.2097872 Boyton, J. (2022). NSW Teachers and FC – too much of a helping hand? Facilitated Communication: a thoroughly discredited but persistent practice. https://www.facilitatedcommunication.org/blog/nsw-teachers-and-fc-too-much-of-a- helping-hand Cardinal, D. N., & Falvey, M. A. (2014). The Maturing of Facilitated Communication: A Means Toward Independent Communication. Research and Practice for Persons with Severe Disabilities, 39(3), 189-194. https://doi.org/10.1177/1540796914555581 Chan, T. (2022). Position Statement on Autistic Communication. Reframing Autism. https://reframingautism.org.au/position-statement-on-autistic-communication/ Chan, T. (2012). My Experience With AAC. Communication Rights Australia. https://www.communicationrights.org.au/education/my-experience-with-aac-tim-chan- 2012/ Department of Education. (2022). Charlie emerges as an advocate from a cocoon of silence. Government of New South Wales. https://education.nsw.gov.au/news/latest- news/charlie-emerges-as-an-advocate-from-a-cocoon-of-silence Hemsley, B., Bryant, L., Schlosser, R.W., Shane, H.C., Lang, R., Paul, D., Banajee, M., & Ireland, M. (2018a). Systematic review of facilitated communication 2014–2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with disability. Autism & Developmental Language Impairments, 3. https://doi.org/10.1177/2396941518821570 Hemsley, B., Shane, H.C., Todd, J., Schlosser, R.W. & Lang, R. (2018b). It’s time to stop exposing people to the dangers of Facilitated Communication. The Conversation. https://theconversation.com/its-time-to-stop-exposing-people-to-the-dangers-of- facilitated-communication-95942 International Society of Augmentative and Alternative Communication. (2014). ISAAC Position Statement on Facilitated Communication. Augmentative and Alternative Communication, 30(4), 357-358. https://doi.org/10.3109/07434618.2014.971492 Queensland Facilitated Communication Training Inc. (2023). Understanding Sensory Movement Difference and Diversity in Autism. https://qldfctinc.square.site/product/alice- owen-workshop-support-workers-service-providers/3?cs=true&cst=custom
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Schlosser, R., Balandin, S., Hemsley, B., Iacono, T., Probst, P., & von Tetzchner, S. (2014). Facilitated communication and authorship: A systematic review. Augmentative and Alternative Communication, 30, 359–368. Scottish Intercollegiate Guidelines Network. (2016). Assessment, diagnosis and interventions for autism spectrum disorders [SIGN 145]. Edinburgh: SIGN. https://www.sign.ac.uk/media/1081/sign145.pdf Simmons, W.P., Boynton, J., & Landman, T. (2021). Facilitated Communication, Neurodiversity, and Human Rights. Human Rights Quarterly, 43(1), 138-167. https://doi.org/10.1353/hrq.2021.0005 Singer, G. H. S., Horner, R. H., Dunlap, G., & Wang, M. (2014). Standards of Proof: TASH, Facilitated Communication, and the Science-Based Practices Movement. Research and Practice for Persons with Severe Disabilities, 39(3), 178-188. https://doi.org/10.1177/1540796914558831 Speech Pathology Australia. (2023a). Augmentative and Alternative Communication. https://www.speechpathologyaustralia.org.au/Public/Public/Comm-swallow/Aug-alt- strategies/Augmentative-Alternative-Communication.aspx?hkey=b6dd3db5-465d-46a2- 94e0-c6b3a4c69de8 Speech Pathology Australia. (2023b). Scope of Practice. https://www.speechpathologyaustralia.org.au/Public/Public/About-Us/Ethics-and- standards/Scope-of-Practice.aspx?hkey=6e4daa08-aa40-4489-aede-f2faf685b4ef Speech Pathology Australia. (2021). Evidence-based practice for speech pathology in Australia. https://acdhs.edu.au/wp- content/uploads/2021/07/EBP speechpathologyinaustralia 16062021-3.pdf Speech Pathology Australia. (2012). Augmentative and Alternative Communication Clinical Guideline. Melbourne: Speech Pathology Australia. Steinbrenner, J. R., Hume, K., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy-Özkan, S., & Savage, M. N. (2020). Evidence- based practices for children, youth, and young adults with Autism. The University of North Carolina at Chapel Hill, Frank Porter Graham Child Development Institute, National Clearinghouse on Autism Evidence and Practice Review Team. Tostanoski, A., Lang, R., Raulston, T., Carnett, A., & Davis, T. (2014). Voices from the past: Comparing the rapid prompting method and facilitated communication. Developmental Neurorehabilitation, 17(4), 219-223. Trembath, D., Varcin, K., Waddington, H., Sulek, R., Pillar, S., Allen, G., Annear, K., Eapen, V., Feary, J., Goodall, E., Pilbeam, T., Rose, F., Sadka, N., Silove, N., Whitehouse, A. (2022). National guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia. Autism CRC. Brisbane.
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Victorian Advocacy League for Individuals with Disability. (2012). Position statement on the use of Facilitated Communication. http://www.valid.org.au/FCPosition/fc position statement.pdf Whitehouse, A., Varcin, K., Waddington, H., Sulek, R., Bent, C., Ashburner, J., Eapen, V., Goodall, E., Hudry, K., Roberts, J., Silove, N., Trembath, D. (2020). Interventions for children on the autism spectrum: A synthesis of research evidence. Autism CRC, Brisbane. Wilson, M., de Jonge, D., de Souza, N., & Carlson, G. (2014). Facilitated communication training: Exploration of perceptions of ability and reducing physical support. Disability Studies Quarterly, 34(1).
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