The experts at ASHA, the American Speech Language and Hearing Association, have evidently become concerned that more and more autistic people have broken through the communication barrier using methods other than theirs. Their response has been to put together a position paper condemning these other methods. It’s a bit ironic. In my own case, speech therapy didn’t accomplish much despite years of expert instruction. Too often, the failed autistic speaker is blamed for the failure to speak because he is labeled as being too low functioning, too lazy, or too dumb to advance. And the speech therapist is off the hook for failing to made headway in communication with the non-speaking student since he’s written off as being low functioning, lazy, or dumb. It’s a great system, to be sure.
So certain methods that try to teach another way to communication are derided as a hoax. Hoaxes certainly exist in autistic treatments. One must be vigilant because unknown neurological factors are at play and people can make treatment claims based on nothing more than the hopes of parents. But hopeful parents can also spend 10 years (or more) on well-established methods that give little result more than a few embedded phrases and some unclearly articulated words to show for it. When the end result of ten years of speech therapy is someone who speaks like I do, then from their point-of-view, it seems a logical extension to determine that the method that gave me the ability to express myself fluently through letters is invalid. Of course, if I had been left with my speech alone to communicate, I’d still be locked in and completely trapped. They reject my communication because they were not successful teaching me- or others like me- to communicate expressively.
So, no thanks. I’ll take a “hoax” that worked over a treatment that failed me any day.
The ASHA position is still in draft form. You can rebut or respond until June 24. Here is a link. And here are some sample quotes that show their line of thinking. Note that the communication of typers, (and this is regardless of the degree of autonomy), is discredited.
“For both FC and RPM, there is no credible evidence that messages are authored by the person with a disability, and there is no credible evidence indicating authentic independent communication or any other beneficial outcome arising from FC or RPM (Lang et al., 2014; Tostanoski et al., 2014; Schlosser et al., 2014).”
“(ii) In RPM, there is no empirical evidence to show that facilitated messages are authored by the individual with a disability.”
“Both FC and RPM rely on presumptions of competency (Travers & Ayres, 2015). Presumption of competency is a risk to an individual’s safety when it is given more credence in treatment decisions than known facts about the individual or evidence to the contrary.”
“In the absence of evidence that messages delivered by RPM are authored by the person with a disability, RPM poses a potential risk of harm to the person using RPM and their family members. This is because, RPM being untested, there is a risk that the messages delivered via RPM are not authored by the individual but are instead authored by the “facilitator.” Other professional associations have warned members against using RPM (Irish Association of Speech & Language Therapists, 2017; Speech Pathology Australia, 2012; Speech-Language and Audiology Canada, 2018).”
This is very important; I certainly will file my comments in favor of FC and RPM…..thank you for bringing this to our attention….i think it is very important that we do not go backwards in the field of disability….more knowledge on the abilities and intelligence of autistic typers (and non-typers!) must be made available to the professional community….in a manner that will be valid, and create believers….
The Institute of Communication provides a direct link to a peer review form for responding to ASHA’s proposed position statement on facilitated communication, in which they call it a “discredited technique that should not be used.” This link, which some may find easier to navigate, is
Ido, how is your book coming? I also have a book in production that addresses stigma and have quoted you several times. Could you contact me about obtaining permission to use these quotes? We Autistic authors have to stick together!
There are many ways to prove that messages delivered via RPM are not coming from the communications partner. The simplest would be correctly answering a question via RPM that the CP did not hear. Hopefully they are not (as it sounds) dismissing RPM altogether. Hopefully they are just saying that for some situations (testimony in a trial, academic exams, etc) it’s important to ensure the message hasn’t been changed. And for those special cases, it wouldn’t take much effort to have that assurance. Which means there’s no good reason for them to discredit or disallow RPM.
Well, I’ve looked at the papers. And I’m deeply saddened that they would propose such a position on RPM and FC. I naively hoped that the papers would be balanced, but they are not. I will read them carefully this week and respond to the questionnaires. The questionnaire is intimidating, since I have no degrees and my only connection to the autism community is recently having been privileged to be able to communicate with a friend’s son via his RPM/FC breakthrough and then reading Ido’s and Diego’s books. I feel like my unqualified comments won’t count for much, but it is important for ASHA to reconsider their proposed positions and also to think on the motivation behind such a position. Thank you for your efforts in letting people know about this opportunity to speak up.
Hopefully they are not, but they are. There is only a brief window of opportunity to give feedback to this statement.Here’s a quote from the proposed position which is available at
“It is the position of the American Speech-Language-Hearing Association (ASHA) that facilitated communication (FC) is a discredited technique that should not be used. There is no scientific evidence of the validity of FC, and there is extensive scientific evidence—produced over several decades and across several countries—that messages produced using FC reflect the voice of the “facilitator” and not of the person with a disability. Furthermore, there is extensive evidence of harms related to the use of FC. Information obtained through the use of FC should not be considered as the voice of the
person with a disability.”
While everyone is allowed to have an opinion, such statements ignore the fact that many vulnerable, stigmatized individuals consider their lives transformed when facilitated communication (which isn’t perfect) gives them access to complex language that no other method has. To say messages resulting from facilitated communication “should not be considered the voice of the person with a disability” is invalidating, further stigmatizing, and more than insulting. Anyone who agrees should make their voice heard on this issue by responding to the proposed position paper and letting others who feel this way know about this opportunity to weigh in.
Sorry for the long post, but I’m with Ido on this and thank him for posting it. We can always depend on Ido for timely and powerful advocacy.
So what does that mean—you’re going to have to change the name of this blog to Ido in Facilitatorland? Or even worse, Facilitator in Autismland?
Sorry to pipe in so much, but Ido himself no longer requires facilitation when he types. This is not only a claim he makes but Dr.Yoram Bonneh at Bar-Laan University in Isreal, who wrote the forward to Ido’s book, confirms it. Still, Ido first learned to type using the rapid prompting method (a form of facilitated communication) which demonstrates the method’s value and speaks against statements like ASHA’s that reject the method outright and throw the baby out with the bathwater. It is highly insulting to invalidate the communication of those less fortunate individuals who continue to need support to type. I would no more say their communication is not authentic than I would accuse a person who uses a wheelchair of having an inauthentic style of walking. I would also not deprive them of the support they need in any environment and would advocate the organization I worked not to do this. That is why it is important for those who see the value in facilitated communication, despite it’s limitations, to respond the proposed position statement.
In my opinion, my communication is not facilitated because I am not touched as I point to letters or type. Nonetheless, I do need a partner to keep me on track because I can get distracted easily. The fact that I require someone with me to keep me on track is enough for some specialists to label my communication as facilitated, even if my iPad sits on a table, no one tells me what to say and I move my own finger to the letters independently. At what point, then, does a person’s communication as their own?
The sad truth is that bad practitioners can abuse FC, and this hurts all of us. At the same time, good practitioners can save a life from stagnation and isolation, and I have seen that. Studies done by hostile panels could hugely and negatively impact the performance of a nervous, vulnerable autistic student. A better study strategy would be long term observation, including observing skill progression, and noting changes in behavior and improvements in happiness post communication.
Intelligently and eloquently articulated as usual. Can’t wait for your new book to come out!
The irony of this position is if ASHA had truly done research they would have noticed as I have that there is a unique quality among RPM and other such methods which for a natural speaker would be difficult to duplicate. It is especially noticeable among the younger predominantly non speaking writers. They seem to have a common style and dialect which, while still the English language, is more reminiscent of advanced level ESL than typical English. Which is quite logical given the accounts I have read of the difficulty of “translating” non word based thought into spoken or typed word. I can’t be the only person who has noticed this?
Hello Joy, you may not be the only person to notice this but it’s the first I’ve heard it articulated. You may be onto something! If you are interested in discussing this further, feel free to e-mail me at firstname.lastname@example.org.
Pingback: A Letter to ASHA
I support the use of letterboard for nonspeaking individuals
Hello again. I may not understand correctly, but even a letterboard can require facilitated support for certain individuals depending on their support needs. Some people find typing gives them better access to complex expression.
It is great to see the powerful, heartfelt, and well-articulated advocacy contained in the letters to the Speech-Language-Hearing Association by Rheema, Laura, Ido, Philip, Jordyn, and others linked to in the Pingback above. How can such voices be ignored? I have written my own blog about this issue as an ally which can be seen at https://www.sociophenomenal.com/forum/starting-the-discussion (sorry, I don’t know how to make a link). Let’s hope the professionals open their hearts and listen!
James Detwiler mentions proving “that messages delivered via RPM are not coming from the communications partner. The simplest would be correctly answering a question via RPM that the CP did not hear.” In my opinion this would be fairly simple to do, to rebut the claims against RPM. Another would be to communicate in a language the CP does not know, i.e., use a CP who does not speak the language of the assisted person. These would work regardless of the form of the assistance.
It’s more complicated than that. It isn’t easy to clarify. Maybe I’ll write an essay to explain how anxiety interferes with motor control and a communication partner who doesn’t understand what I’m saying would be the source of extreme anxiety. There are numerous examples of relaying unknown information that happens naturally, however because autism creates motor difficulties, novel experiences, such as tests, need to be tried without fear that mistakes confirm to a biased group that you’re an idiot who doesn’t understand words. So, I’m for testing, but done right and sensitively, not as a “gotcha.”
It was very disappointing (but alas not surprising) that the American Speech and Hearing Association went ahead so fast and confirmed their policy against Facilitated Communication. Did they listen to the voices of those who find the technique helpful and even life-changing? It would be nice if they addressed those voices more directly and said why they found it more important to “listen to science” (the “experts” who value one kind of evidence) rather than the voices of the people involved and first-hand reports. Maybe I didn’t have the patience to properly navigate their website, but they don’t seem to think this an important enough matter to post prominently, even for those who will feel this decision as another form of oppression and evidence of being ignored.
It is only evidence of their own rush to embrace the conventional standards of current scientific thinking. Sad for an organization that prides itself on it advocacy.
Thanks Ido for letting us know about their decision.
Dear Ido, On the above thread, a Commenter named Joy mentioned that some writers have non-word thought. Does this apply to you? I assumed since you listen to people around you speaking English (or occasionally Hebrew) that your flow of thought is the same as that of a NT such as myself.
However, I do know that there is controversy over whether NT’s really do formulate sound in their bean before saying the thought out loud or writing it. Making a rough guess here, I would say that I sometimes hear the words before I write them. Anyhow, do you?
I see the words spelled out in my head in English. That’s how I’ve thought since I was pretty young. I used to think everyone thought this way, but obviously I’m wrong.
Did you see the words spelled out in your head before you learned to communicate back when all you had for education was those basic drills? Do you remember how you thought before you learned to spell?
Just curious about other ways of thinking if that’s OK.