Actually this is mostly about you—and (indirectly) about FC
The 2021 biopic This is Not About Me, recently became available for a small rental fee on YouTube. Given its topic (more on that below) and financial backers (the pro-FC organization CommunicationFirst and several other pro-FC organizations and individuals), I felt I had to see it.
This is Not About Me aspires to send a broad message on behalf of all non-speakers. Teachers and therapists need to recognize that disruptive and aggressive behaviors are often the result of emotional distress and frustration--including the frustration of not having adequate means to communicate one’s wants, needs, and emotional distress. Instead of suppressing such behaviors through restraint, or corralling and punishing them through seclusion, teachers and therapists should view them as cries for help. Everyone who works with the child must figure out what the child is communicating, make changes to address the child’s needs and distress and, so that the child can express those needs more clearly going forward, help the child access the tools she needs to fully express herself. These tools may also reveal that the child is much more capable than teachers and therapists have assumed: capable, perhaps, of more than just life skills classes, simple object labeling, repetitive directions-following; capable, perhaps, of accessing the general education curriculum.
These messages are eminently wise, reasonable, and ethical. They’re also messages that properly trained teachers and therapists have been exposed to for decades—and that decent, self-controlled teachers and therapists routinely act upon (Heward and Orlansky, 1988).
What’s new, as recounted in This is Not About Me, are two completely different items. Item one is the challenges of its subject and the horrendous treatments she experienced at the hands of teachers and therapists who either were somehow ignorant of, or willfully ignored, the above messages. Item two is a set of curious omissions and suggestions which, taken together, might appear to lend some credibility to facilitated communication—at least in the eyes of those who are already prone to believe in one or more variants of it (FC, Rapid Prompting Method/RPM, and/or Spelling to Communicate/S2C).
In other words, This is Not About Me is more about its subject and her peculiar circumstances than about most other special education students and their experiences, and its messages—those, that is, that aren’t already part of the common, longstanding wisdom and professional ethics in the world of special education professionals—have more to do with the plausibility of FC/RPM/S2C as valid communication methods than with how schools should treat special education students.
The subject of the documentary, a now 29-year-old woman by the name of Jordyn Zimmerman, is repeatedly described as non-speaking, including on the This is Not About Me website. Zimmerman’s own website states that “After being diagnosed as autistic at a young age, she did not receive access to augmentative communication until the age of 18.” Zimmerman is Board Chair of the pro-FC organization CommunicationFIRST and serves on The United States President's Committee for People with Intellectual Disabilities. In addition, she is an Apple Distinguished Fellow and a guest blogger at AssistiveWare (AssistiveWare being another of This is Not About Me’s financial backers, and the creator of the software that Zimmerman uses on her Apple iPad as her augmentative communication tool). According to Zimmerman’s website, she is now pursuing an MBA at the online school Quantic School of Business and Technology.
This is Not About Me is bookended by two statements about how unusual Zimmerman is. One of its first sound bites is “She was probably one of the most challenging children I’ve ever worked with.” The speaker, autism program director Wendy Bergant, describes Zimmerman’s extreme reactions to unexpected change and how she would hurt herself in “ways that were very uncommon to see even in my field.” One of the last sound bites, from attorney Virginia Wilson, is “I think she is unusual but I think the things she’s done all kids that are nonverbal can benefit from.”
Even those who aren’t particularly familiar with autism spectrum disorders know that challenging behaviors are common in autism. For those who are familiar with autism, what should appear especially unusual about Zimmerman is her linguistic profile, as portrayed by This is Not About Me. While we never hear Zimmerman speak, we do see her type on her AssistiveWare-enabled iPad. And while many non-to-minimal speakers with autism can type basic words and routine phrases independently, Zimmerman can type sophisticated words and novel sentences: sentences like “I have a challenge for all of you,” “Tell students to go after their dreams,” and “Do you accept my challenge?” Furthermore, while nearly all FCed individuals appear to type sophisticated words and novel sentences, but only when a “communication and regulations partner” (CRP) hovers within auditory, visual, and tactile cueing range and stares at the letterboard or keyboard, Zimmerman’s typing is clearly independent. Not only is there no CRP hovering over her; she types much faster than FCed individuals and uses both hands—which makes letter cueing much more difficult than it is in the case of the single, wandering index finger that typifies facilitated typing.
But I’m guessing that most people won’t fully appreciate the significance of these differences between Zimmerman’s typing and the typing of someone who is subjected to FC—especially if that person’s CRP is merely sitting next to them and not touching them or holding up the letterboard. That’s because I’ve heard two of the autism language experts at last year’s NIDCD Webinar equate Zimmerman’s communication skills with that of an FCed individual who falls into the latter category.
This confusion has detrimental consequences. The more Zimmerman’s clearly independent typing is confused and conflated with too-subtle-for-naïve-eyes FC, the more it appears from Zimmerman’s example that FCed individuals can gain complete communicative independence, and the more legitimate FC appears to be. Unfortunately, This is Not About Me adds to this confusion. Zimmerman’s extreme, often self-injurious behaviors (as described by the autism program director, Zimmerman’s mother, and excerpts of a summary of psychological evaluations), as well as the rocking back and forth or side to side that we observe in many of her scenes, are more common in profound autism (where FC/RPM/S2C is also common) than in mild autism (where FC/RPM/S2C is rare if non-existent). Like many (most?) individuals who are subjected to FC, and unlike nearly everyone else on the autism spectrum, Zimmerman claims to have a brain-body disconnect: the voiceover of her typing tells us that she fights with her body on a daily basis; that her body doesn’t want to follow her brain. As with most (all?) individuals who are subjected to FC, everyone initially assumed she was low functioning and couldn’t communicate until she experienced a breakthrough through typing. Finally, Zimmerman uses a phrase for that breakthrough that matches one of the code phrases used for FC by FC proponents: “communicating through typing.” All this makes Zimmerman appear to have more in common with FCed individuals than with individuals at the non-FCed end of the autism spectrum.
One of Zimmerman’s most obvious points of commonality with non-speakers, of course, is that we never hear her speak. But is she actually non-speaking or, at the very least, as minimally speaking as those who are subjected to FC? This is Not About Me is oddly evasive. Its excerpts of the psychological summaries mentioned above omit all references to Zimmerman’s language abilities, even though all autism evaluations include language evaluations. One excerpt mentions a full-scale IQ “in the mentally retarded” range but cuts off before the score is disaggregated (as it nearly always is, especially in autism evaluations) into verbal and performance IQ sub-scores. In a documentary about communication problems, these are egregious omissions. Nor do the talking heads supply us with any more information: the closest anyone comes to suggesting that Zimmerman has minimal speech is to note that she sometimes produces “unintelligible noises.” But unintelligible noises do not rule out speech.
The only person to share anything about Zimmerman’s speaking skills is Zimmerman herself. This happens in an excerpt of Zimmerman’s presentation at a Board of Education meeting nine years ago, where we hear her voiceover say:
I can talk. But when I speak with my mouth, first I have to think of the word and if I even know what that word means. Then I have to figure out how to pronounce the word so everyone can understand me. Next I have to modulate my voice to the appropriate volume and tone so that it isn’t too loud or too quiet. It is very frustrating.
It’s not clear from this voiceover, however, whether Zimmerman can speak in full sentences with sophisticated vocabulary, or only in single, basic words.
However, if you go back to the original source, you’ll see that the above excerpt has omitted a number of phrases that would have suggested a much more complex communication profile. These omissions include mid-sentence cuts that were, suspiciously, so smoothly edited out of This is Not About Me that viewers would have no idea that anything was missing. Here is a transcript of the original source with the omitted material in boldface:
I can talk. I can even have a conversation with you. But I find speaking very difficult, especially when I’m upset or overstimulated. So for over a year now, I’ve been using an app on my iPad a lot of the time. When I speak with my mouth it isn’t just my voice box and my mouth. First I have to think of the word and if I even know what that word means. Then I have to figure out how to pronounce the word so everyone can understand me. Next I have to modulate my voice to the appropriate volume and tone so that it isn’t too loud or too quiet. Even though this is very difficult for me it is probably the easiest step. Lastly, I’ve got to talk and make sentences. I’m sure you’ve got to do all of these things too. Because my brain moves much faster than my mouth I have to constantly fight myself to do them. It is very frustrating. I also miss a lot of what I want to say and sometimes I say different things than what I mean or want to say.
As this longer excerpt makes clear, Zimmerman’s spoken skills extend well beyond those of most FCed individuals. For all the struggle and extra time it takes her, she can “make sentences” and “have a conversation with you.” Except for the remark about the brain-body disconnect (“sometimes say[ing] things different things than what I mean or want to say”), this longer excerpt is problematic for any pro-FC agenda This is Not About Me might possibly have.
It also strains psycholinguistic plausibility. Many of the above challenges—e.g., those of finding words and making sentences—apply to typing as well as to speech. The challenge of “my brain mov[ing] much faster than my mouth” should actually be more of a problem for typing: typing is generally a much slower process than speech, even in the case of people who have difficulty pronouncing words, and even in the case of Zimmerman’s relatively rapid typing. Why Zimmerman prefers typing over speaking remains largely unexplained.
Also straining credibility is the idea that none of Zimmerman’s teachers, therapists, or care providers appeared to have been aware of, or to have taken advantage of Zimmerman’s literacy skills. We learn that she is able to write words and that her typing skills emerged the moment she was handed an iPad. But, with pens and paper and keyboards ubiquitous in homes and classrooms, how did everyone go so many years without noticing Zimmerman’s ability to express herself in writing?
The only apparent explanation is that it was part and parcel of the mix of extreme incompetence and abdication of responsibility that led to Zimmerman’s scandalous treatment by school administrators, teachers, paraprofessionals, and clinicians throughout most of her school years, some of the more egregious examples of which include:
Being placed in a class where they played video games all day long
Later, being placed in a closet. Zimmerman’s mother reports that “They cleared out a closet in the high school. And that’s where my daughter stayed.”
Being forced to use an extremely limited PECS book (Picture Exchange Communication System) that only allowed her to form sentences that began with “I want,” “I see,” “I have,” “I smell,” “I hear,” and “It is,” and that had “cookie” as the only food option.
The PECS experience, in particular, was so frustrating to Zimmerman that she felt motivated to advocate for others who are subjected to PECS so that they, too, can get “the devices they need to express themselves instead of being forced to say what professionals want them to say.” Oddly, later on in the documentary we see Zimmerman volunteering in a classroom at CARES (Cardinal Autism Resource and Education School)—the one school Zimmerman attended where people tried to understand her, and where she had her iPad-based communication breakthrough—and here we see PECS books everywhere, as well as other legitimate AAC (augmentative and alternative communication) tools. Despite this, the film fails to clarify that there is nothing inherently limiting in terms of linguistic expression about PECS books: they are customized to contain whatever vocabulary and sentence structures the teachers think the child is ready for, and can even allow open-ended, word-by-word communication.
The same is true of other AAC tools: all high-tech voice-output devices have keyboards. But to dwell on this point would undermine the FC-friendly notion that open-ended communication is only possible with regular keyboards, iPads, and letterboards, especially when they are held up and/or hovered over by CRPs.
As for Zimmerman, the actual limitations on her ability to communicate, as this film makes clear, stemmed from the scandalously inept and unethical professionals that populated the educational settings to which she was subjected.
Which brings us to the This is Not About Me’s most compelling message: namely, for all the ethical guidelines that teachers, speech-language pathologists, other autism experts, and school administrators are supposed to follow, there are still some cases where professionals fail, for one reason or another, to adhere to those guidelines. When this happens, the rights—including the communication rights—of some of our most vulnerable citizens are egregiously violated.
The persistence of such violations, indeed, is one of the chief reasons for this website—and for this and many other blog posts.
REFERENCES:
Heward, W. & Orlansky, M. (1988). Exceptional Children, Third Edition. Merrill Publishing Company: Columbus, Ohio.
