ASHA’s Position Statement on FC and RPM Violates My Child’s Human Rights
Does ASHA hate autistic people?
I can’t count how many times I’ve asked myself that question over the past few years.
If you’re a parent, educator, or provider of a nonspeaking or minimally speaking child, this is an article you’ll want to read – even if you’ve never heard of FC or RPM. I’ve included hyperlinks throughout this article for further reading.
ASHA (American Speech-Language Hearing-Association) is the organization that sets the standard for SLP’s and related fields in the United States.
In 2018, ASHA wrote a position statement, discrediting Facilitated Communication (FC) and Rapid Prompting Method (RPM).
Due to their position of power, ASHA’s statement actively limits the communication options available to my son and his nonspeaking peers, which is a violation of their human rights.
If you aren’t familiar with this topic, it can be a bit confusing. I’ll use bullets to break it down:
- Simply put, any method that involves supporting someone with a disability to point to a letter board, or to type on a tablet/keyboard could be considered “assisted communication.”
- Communication support people, sometimes called communication partners (CP’s), can take on various roles depending on the individual needs of the person communicating.
They might arrange materials, assist with emotional and physical regulation, or prompt for visual attention. They also help ensure access to communication materials such as letter boards, keyboard, or stencils. - One form of assisted communication is known as facilitated communication. FC involves the communication support person providing various degrees of physical support.
They usually begin with applying backwards resistance on the communicator’s arm to help them feel proprioceptive awareness. This is similar to the effect of wearing a weighted vest.
They fade support by transitioning this resistance to the elbow, then the shoulder. The goal is always to help the communicator develop the most independence possible. - RPM and Spelling to Communicate (S2C) are educational methods that start with large letter stencils, transition to a letter board, and eventually to a keyboard.
With RPM and S2C, communication partners do not touch the communicator. They hold the stencil or letter board. As with FC, the goal is always to help the communicator develop the most independence possible.
All of these methods are based on the principle of presuming competence in their students.
Speech is a motor skill. Language is not. People who have motor differences shouldn’t be assumed to also have cognitive impairments so significant that it would preclude their ability to understand and communicate language.
Rather than focusing on basic cognitive skills, they all concentrate on developing motor skills and sensory/emotional regulation techniques to help communicators spell out their thoughts. The goal for all of them is to help the communicator develop the most independence and autonomy possible.
Most importantly, they are all under the same threat due to ASHA’s position statement.
Spelling is a huge breakthrough for many nonspeakers. The inability to use speech is often falsely equated to low intelligence. These misconceptions often translate to inappropriate educational models and therapies.
For decades, nonspeaking children have been sent off to institutions, never to be heard from again. Even now they’re segregated from their typically developing peers at a young age – just like my son.
There are several problems with ASHA’s position statement on FC that I want to lay out:
- It’s entirely too vague. ASHA considers any type of physical assistance to be “facilitation.” We all need assistance learning new skills.
Due to ASHA’s position of power, this overreaching language can easily be applied to deny appropriate support in schools for nonspeaking students and those who require physical assistance. - It uses deceptive language. ASHA’s board takes advantage of the organization’s reputation to influence people who trust them. They claim that facilitated typing “denies the user’s access to their human right of communication.” That type of language evokes strong emotions!
In reality, down here on planet Earth, it’s their own position statement limiting the communication options available to my son and his nonspeaking peers, which is a violation of their human rights.
I was once in a relationship with an abusive partner who used this type of manipulation. Since then, I’ve learned to call it out whenever I see it.
The tagline of ASHA’s website reads, “Making effective communication, a human right, accessible and achievable for all.” How can they claim that, while actively limiting access, and discrediting spellers who require assistance?
How can my child advocate for his own human rights if he’s denied the proper teaching strategies to learn how to use the alphabet? - It seems to contradict their own code of ethics. ASHA mandates their speech therapists to be autonomous professionals, responsible for holding the welfare of their clients paramount. Interestingly enough, their position statement continuously endorses behavioral interventions and cites ABA companies to back up their claims.
So which is it? Are they autonomous and interested in the welfare of their clients? Or do they want to restrict access to communication in exchange for behavior modification? - Sweep in front of your own front door. ASHA is a speech therapy organization that primarily subscribes to the medical model of disability. Their main focus is essentially verbal communication.
While they list AAC as an appropriate service (that FC somehow hinders people from accessing), I can’t count the number of parents who attend speech therapy with their children, yet have no clue what an AAC device is.
My own son was four years old before a doctor told me about it. By that time, he had seen over a dozen SLP’s. Maybe before restricting access to the alphabet, ASHA should first ensure they’re doing their own jobs correctly.
Furthermore, methods that teach skills for spelling or typing – FC, RPM, S2C, or any combination of these programs – focus on sensory and emotional regulation, and developing motor skills of the upper body, arms, hands, and fingers.
It seems to me that ASHA’s board has veered out of their lane on this topic. They might do well to reevaluate their priorities, being the “autonomous” professionals they are.
Over 150 organizations and respected professionals, many of whom are accredited by ASHA, have written responses to ASHA’s position statement. We need more SLP’s, educators, parents, and advocates to do the same.
You can write to them here:
Board of Directors
American Speech-Language-Hearing Association (ASHA)
2200 Research Boulevard
Rockville, MD 20850-3289
If you’re wondering why ASHA would take such a hard stance about facilitated communication, you’re not alone. They cite reported cases in FC where the facilitator unduly influenced the communication of the speller.
As with any professional service provided by humans, there are best practices, and there are people who don’t follow those best practices. If a few oxygen tanks from a single manufacturer suddenly malfunctioned, would the World Health Organization decide to not use oxygen tanks anymore?
No. No they would not.
For some reason, the onus always seems to be placed on the disabled community to prove errorless efficacy – unless it provides financial benefit to a specific organization. They obviously don’t hold ABA to the same standard.
The potential for individuals to misuse a great tool should never be an excuse to throw out the tool altogether. Instead, we should look at ways to prevent misuse of the tool.
ASHA doubled-down on the potential risk to family members and teachers, citing “several” false allegations of sexual abuse. Unfortunately (or conveniently), the journal article they reference isn’t written in English.
Luckily, Edlyn Peña sheds light on that topic in her book, Communication Alternatives in Autism. I’ll paraphrase (with permission) for plain language:
The media has highlighted several cases in which students who used FC falsely communicated that a parent sexually abused them… Parents were temporarily jailed and children were removed from their homes for months. These examples are horrific, leaving families unnecessarily broken and traumatized…
In 1994, researchers analyzed the medical records of over 1,000 children who reported sexual abuse in upstate New York from 1990 – 1993. Thirteen cases of sexual abuse were reported by children using FC. After extensive investigations, seven were determined to be indicative of abuse.
This indication rate is consistent with the average upstate New York indication rate for all children of approximately 47%. These results demonstrate that allegations of abuse that are initiated owing to an fC disclosure should be taken seriously.There are countless instances of spellers reporting pain or discomfort. Many of these complaints were medically validated by doctors after investigating the child’s symptoms. General practitioners, neurologists, and pediatricians have issued medical diagnoses after listening to these patients.
A 49 year-old man who used RPM spelled out, “Stop. I am in need of medical attention.” After describing his symptoms, his doctor discovered he had testicular cancer. After treatment, he now has a clean bill of health.
ASHA maintains that this risk of harm to caregivers outweighs the risk of limiting communication options to this perpetually undervalued, underestimated population.
I would argue the potential harm of limiting communication options is far greater. The audacity of this organization to limit the communication options of people who are already at a higher risk of abuse…
Shame on them.
So You’re Saying They Should Be Quiet?
In this section, it’s my pleasure to boost the voices of those who communicate by spelling in one form or another, and consequently wouldn’t ever have their voices heard if their communication choices were left up to ASHA. Because if ever there were a hill worth dying on, this would be mine.
It is my right as a person to always have communication no matter how controversial it is. Communication is vital to life, but it is taken for granted by those who are with a voice. Communication is more than talking; it’s the lifeline to love, friendship, needs, and success.
~ Diego Peña – author, advocate
Special education nearly killed my will to live. As a nonspeaking autistic person, I had no way to share my thoughts with the world for the first 13 years of my life… like most of my peers, I was trapped in a segregated school… My first big break came when I learned to control my movement enough to spell on a letter board.
Eventually, I found my voice through spelling. But even when I could communicate with my parents, I did not have support at school… When I changed schools, my disability did not change. The people who were around me did. They believed in me… The teachers brought my lessons outside and built trust that they would teach me even if my body eloped.
I am now regulated at school almost all of the time. I could not have gotten there without their firm belief that I could learn even when I could not yet fully demonstrate it.
~ Rachel Kripke-Ludwig – autistic advocate, college-bound student
Before I went to middle school, estimate that I spent six years trying really hard not to be autistic. My sweet, eager teachers asked me to point here or do this, apparently assuming that we could ABA the autism out of my body… Starting in fifth grade hope crept into my life.
~ Ethan Tucker – high school student, autistic advocate
We seemed to be convincing the school (that) autistic typers should actually be allowed the same education as every child who speaks. Sad isn’t it that the notion of educating all kids with the presumption they all can learn is so radical…
Spelling gave us the ability to explain ourselves. Our families and professionals finally understood why we did so many baffling things. I think until we spellers started communicating no one knew about our body brain disconnect. For the first time in history a group of people vastly misunderstood and discarded was able to reach out to the world.
Just thinking about that makes me sad and elated. Sad for the lives lost, elated for the lives being found. The theory of movement difficulties was born out of this new knowledge. The role anxiety plays in autism was finally revealed too.
~ Chandima Rajapatirana – poet, writer and advocate
Simply looking at me gives you exactly zero information about who I am. If you saw me at the store, you would see my stimmy hands and hear my scripts and think I am stupid. If you actually got to know me, you would realize I am a snarky, smart teenager operating a body of a fool. My brain and body don’t talk well to each other. It is like they run different operating systems.
The idea that people can be mentally competent but struggle to control their body is completely normal when we talk about someone who gets injured or has a stroke. This is not true when people think about autism. Apraxia does not discriminate, so neither should we when we assign the possibility of intelligence to humans.
~ Trevor Byrd – nonspeaking teen advocate
For the first thirteen years of my life, I actually lived the typical life of a non-verbal autistic person who was assumed to be intellectually disabled… I also suffered from behaviors often seen in autism such as biting, yelling, scratching, and head banging…
~ Sue Rubin – National Award-Winning Advocate
Life changed drastically when in the eighth grade I was introduced to facilitated communication… Without having been included in regular education in high school, I never could have attended college, which was an amazing experience intellectually and socially.
Although people tried to anticipate my needs, they let their understanding of their own bodies guide them, and thus, often missed the mark… I hum quietly, or flick my shoulders in order to cope with noises in the environment… Before I could communicate this, people at school often prevented me from using such strategies, then blamed me when I would engage in noisy, anxious, repetitive chatter…
When I learned to spell out my thoughts, I was able to provide suggestions as to how I could successfully navigate stressful environments. Once people understood my reactions, they allowed me to use my coping strategies, and provided the reassurance I required.
~ Damon Kirsebom – autistic advocate, award winning painter
Hardly a day goes by that I don’t thank my lucky stars that I know how to letterboard. My life would be so different: I wouldn’t be in general education; I wouldn’t be on my way to graduating with a regular diploma… I am irate over the notion of a committee of non-experts is trying to take away this form of communication.
~Niko Boskovic – autistic advocate and blogger
It seems like a personal vendetta, to be honest. I can’t understand what their motivation is except to stifle the voices of people with disabilities. This is where we are presently: the able-bodied deciding what’s best for us. I say enough to that historic oppression… your biases aren’t fooling anyone.
I had no way to communicate. You cannot imagine how that feels. At first you are hopeful but then despair sets in. You start to realise that no one has seen you. You see that the people around you have lost hope too. My story is a happy one… Tracy saw me immediately and started to help me out of my prison…
But many are not so lucky. They are stuck in schools that treat them as low functioning. They have doctors say that they are too stupid to learn. They are stuck in prisons of hell. My heart breaks for them. My soul screams with theirs.
~ Akha Khumalo – poet, advocate
For a more comprehensive resource list, click here.
Check out NeuroClastic’s Directory of Nonspeaking Bloggers and Advocates.
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11 replies to "ASHA’s Position Statement on FC and RPM Violates My Child’s Human Rights"
[…] ASHA’s Position Statement on FC and RPM Violates My Child’s Human Rights […]
The Board of Directors of the American Association on Intellectual and Developmental Disabilities (AAIDD) strongly endorses the right of people with intellectual and related developmental disabilities to self-determination and recognizes that having an independent mode of communication is essential for individual agency (e.g., taking actions, making choices, expressing preferences).
Based on the current scientific evidence, the Board does not support the use of Facilitated Communication (FC)1 or the Rapid Prompting Method (RPM)2 as modes of communication for people with disabilities. In the case of FC, there is no scientific evidence supporting its validity, and there is considerable evidence that the messages are authored by the facilitator rather than by the individual with a disability. In the case of RPM, there is a lack of scientific evidence for its validity, and concerns about message authorship similar to those for FC have been raised.
The Board of Directors concludes that rather than helping people express their thoughts, desires, and choices, FC and RPM have the potential to effectively take away people’s voices. This is due to the risk of facilitator influence/authorship as well as the potential to displace efforts to access scientifically valid communication modes, such as those associated with the field of Augmentative and Alternative Communication (AAC)3.
Daisy — If you still believe this nonsense after reading the compelling posts of the non-speaking self-advocates above, I don’t know what to say to you. Suffice it to say that my non-speaking son is now a published poet and a successful college student thanks to S2C, without which he can hardly communicate at all. As for the notion of facilitator influence authorship, none of my son’s facilitators — including me — are capable of writing the beautiful poetry my son writes. His voice is his own, and it would be silenced without S2C. Open your mind, and your heart, and stop advocating for the silencing of non-speaking voices.
Daisy,
The ASHA statement relies on two reviews, one produced for ISAAC and published in 2014, and the produced for ASHA itself. The claim that these present “considerable evidence†to discredit FC is laughable.
• The 2018 review was “empty†– no studies were reviewed.
• The 2014 review reviewed only four primary studies published since the turn of the century. Only one of those was published in the last decade, although the research it discusses was undertaken for a thesis submitted in 2005.
• While the 2014 reviewers described methodological problems with all four included studies, the shortcomings were taken to discredit only those results that may have been interpreted as supportive of FC. At least three of the four studies reported potentially supportive evidence, but this was ignored by the reviewers, who falsely summarised all four studies as unequivocally discrediting FC. For more information, see section 7 of https://www.academia.edu/38797833/Recent_Reviews_of_Facilitated_Communication_Mislead_Policy_Makers .
• The poor quality of the 2014 review was highlighted in 2020, when it was excluded from an Australian “umbrella review†on the basis that it was not systematic. See the above link for a critique of both the 2014 and 2018 reviews.
• The suggestion that facilitators may influence communication is not disputed by proponents of FC, but the interpretation of this as “control†is. The concept of “control†does not take account of the possibility that at times †for example, when unsure what is required of them or anxious about presenting a wrong answer †FC users may actively and intentionally seek cues from their facilitators. Available quasi-experimental data is inadequate to discriminate between these two interpretations. Please see section 5 of the paper linked above.
• The apparent lack of “scientific evidence†to support FC is, in part, an artefact of the mistaken practice of equating study quality with a “hierarchy of evidenceâ€. If the Internationally accepted GRADE approach to rating the quality of evidence were to be applied, the quasiâ€experimental evidence commonly taken to discredit FC would be “rated down†due to its reliance on a surrogate outcome measure of dubious importance to stakeholders. Under those circumstances twentyâ€first century mixed method studies that tend to support FC – all of which were summarily excluded by the 2014 and 2018 reviewers – provide the best available evidence and reviews would draw very different conclusions to those currently on record. (Please see section 3.3.2 of https://www.academia.edu/49548918/Comments_on_the_2020_Autism_CRC_synthesis_of_research_evidence_Interventions_for_children_on_the_autism_spectrum regarding quality assessment under GRADE).
• Extensive feedback to ASHA provided strong insight into the nature of outcomes that are important to stakeholders (see https://unitedforcommunicationchoice.org/letters-to-asha/ . Although ISAAC had requested this feedback, it was entirely ignored by the organisation that purports to “strongly endorse the right of people with intellectual and related developmental disabilities to self-determinationâ€.
ASHA should be ashamed to have been so misled in 2018, and current leadership has a responsibility to redress the situation.
Interestingly, when I asked to be on the AAIDD committee to review the evidence and address their concerns, I was shut out in a highly irregular and unprofessional manner. FYI, AAIDD, used to be a professional organization, but in recent years, is more concerned with selling assessments based on observations of behavior–a problem if they acknowledge that assumptions about cognition based on behavioral observations is not valid. If the organization acknowledged the neurological basis for FC and RPM, it would bankrupt the organization which has been losing members and membership dues for years.
Have you read the research used to discredit FC? It’s laughable – or would be, if not for the human suffering it ignores. I’ve seen “I want to stop” repeatedly being marked as a wrong answer in a test transcript, with testing continuing. I’ve seen a study conclude without medical examination of a boy with bloody diapers and an allegation of sexual abuse, simply because he didn’t do well on a test (PPVT) that FC theory would’ve predicted he’d do poorly on. Only bias to the point of malice could lead someone to read these studies and believe their conclusions.
Also, it’s ironic that the ASHA statement ends up accidentally forbidding aspects of the ABA-based treatment they support, too. It’s pretty common for ABA-based AAC programs to use a prompt hierarchy with physical assistance at the extreme end, such as hand-over-hand guiding a child to hand the PECS card to the communication partner.
The bloody diapers case especially makes me mad, because even if they were right and this kid wasn’t being sexually assaulted, bloody stools is also a potential sign of serious health problems. The YouTuber TotalBiscuit died of colon cancer, and the first sign he had was bloody stools, which he ignored for several months – a decision that may have made the difference between living and dying. There is no way to excuse not giving that child a medical examination after noticing bloody diapers.
Thank you so much for writing such a compelling post. S2C is one of many modalities of communication therapy we have employed with our son. We use AAC, traditional speech therapy, Prompt and the Kaufman method. Of all therapies, S2C has been the biggest game changer and offered our son the ability to not just functionally communicate, but to communicate for the joy of communication. It has allowed him to emote and express in a way no other approach has come close to providing. It may not be for everyone but it has been life changing for my someone.
How do so many of these children go from not even reading to “spelling” in paragraphs?
“Not even reading”? What a massively dangerous assumption! You might like to look at this: https://www.sciencedirect.com/science/article/pii/S014976341630639X?fbclid=IwAR0BNmoAqTKxhKIGMS1IJ2duH6mo9DrSlpmTV1fz0bu4cJPJYFWo65yg0VA
Because they actually could read all along and no one realized that they could.