Within local autism politics, I’ve become aware of an alliance between parents whose children are subjected to variants of facilitated communication (Spelling to Communicate and Rapid Prompting Method) and parents of higher-functioning autistic children, who aren’t. At first this alliance surprised me. Wouldn’t parents of verbal autistic children recognize how odd it is that facilitated children are able to output messages of much greater linguistic sophistication and social insight than those produced by their own children? That facilitated messages contain so many more metaphors and sophisticated social and psychological vocabulary words than unfacilitated messages produced by higher-functioning individuals who communicate independently?
Compare:
“The irony of a nonspeaking autistic encouraging you to use your voice is not lost on me.” (Facilitated)
“This fan is made by Halsey, and doesn't have a brand name anywhere on top of the motor housing or on the switch housing.” (Unfacilitated)
“My senses always fall in love: they spin, swoon; they lose themselves in one another’s arms. Your senses live alone like bachelors, like bitter, slanted rhymes whose marriage is a sham.” (Facilitated)
“Doing something fairly bad is only 3 and bad is 2 and very bad is 1.” (Unfacilitated).
Furthermore, why would parents of higher-functioning children who speak and type independently have any vested interest in believing that facilitated communication, despite all the evidence against it, is valid?
The more I’ve thought about this, however, the more sense it makes to me that parents of unfacilitated autistic children not only are susceptible to believing in FC, but actively support those whose children use it.
First, developments in the last few years reveal that large numbers of people are gullible, including major media outlets (see our FC in the media tab), the National Institutes of Health, and numerous autism experts. There’s little reason why parents of unfacilitated high-functioning autistic children should be any different.
Second, some parents of unfacilitated high-functioning children request accommodations that, while not going nearly as far as FC does, nonetheless lean towards FC. That is, while the sought-after accommodations mostly do not substitute the words of the student’s helper for the student’s own words, they do go a certain distance in that direction. And while the rationale behind these accommodations does not assume that there’s a verbally normal-to-way-above-normal mind locked inside a non-speaking individual, it often presupposes something similar.
Luisfer Valenzuela, via Wikimedia Commons
Many parents of unfacilitated autistic children, like the parents of facilitated children, are eager to get their kids out of special ed classes and into general ed classes, or (where possible), honors classes. Many would like to believe that, with proper academic accommodations, their children can handle honors-level assignments. This is particularly true in wealthy suburbs, home to some of the most competitive parents: people with the motivation and means to choose where to live based on the reputation of the local schools, particularly their honors programs. For many of these parents—whether or not their kids have special needs—failing to get their children into honors classes (as some have told me outright) is an embarrassment, a badge of shame—as much for the parents as for their children.
In other words, my child is at least as highly intelligent as his peers and just needs proper supports to allow that intelligence to emerge.
What about the supports themselves?
These include several that have what we might call “FC-adjacent” connotations and implications:
Pictures and wordbooks to guide the child’s writing. The rationale is not that the child doesn’t know the words and their meanings, but that she simply has trouble retrieving them from memory. In other words, the words are there but are locked inside. Proponents of FC often use retrieval difficulties as an excuse for message-passing failure; RPM proponents also evoke it as justification for the facilitator’s prompts.
Alternative ways of “demonstrating understanding.” In lieu of an essay, for example, a child might produce an illustration or cartoon. The rationale is that all kids understand: it’s just that some need a customized way of outputting that understanding. For some, it is a picture; for some, a travel brochure; for some, a puppet show; for some, extra time and/or a smaller “sample”, or subset, of the assigned work; for some, the option to retake a test of up to three times; for some, an aide who makes sure they understand directions, assignment prompts, and test questions, helps them organize their ideas, and keeps them on task; for many, some combination of all of the above. Especially when it comes to aides, who often end up (sometimes unintentionally or even unwittingly) doing a lot of the work for the student, it’s not too many steps to a facilitator holding up a letterboard.
Outlines, keywords, and study guides (guides that often must contain everything that might later appear on a test). The rationale, again, is that while all kids have the linguistic skills to understand what they read and what’s discussed in class, some need help with organization and attention. This recalls another justification for the RPM facilitator: helping a distracted child stay organized and on task.
Fill-in-the blank and multiple-choice questions instead of long-answer questions; a reduction in multiple choices from 4-5 to 3 or 2; the option to indicate choices with an index finger rather than filling in the bubble. Rationale: some students may have difficulty with expressive language but still understand the academic content; some may have handwriting or other motor difficulties that undermine their ability to answer long-answer questions or fill in or circle bubbles; some find too many multiple-choice options overwhelming. A child pointing to one of two or three multiple-choice answers recalls the initial stages of RPM, in which a child “demonstrates understanding” by pointing to one of two held-up fragments of paper with words on them.
These accommodations aren’t specific to honors classes or general education; they also routinely occur in special education classes, especially when students take state-mandated tests. Nor are competitive parents the other underlying factors.
The other players are the Powers that Be in the education world. These folks believe—or want the rest of us to believe—that academic goals should be based exclusively on students’ calendar ages. Only those with extreme cognitive disabilities—about 1 percent of the population—are exempt. Everyone else, the Powers that Be feel (or want the rest of us to feel), have it in them to meet these goals, so long as they are given adequate supports to demonstrate and output their understanding. The Powers that Be, in other words, are allied with many (though by means not all) special needs parents.
Second, there’s the reality of special education classrooms. Ideally, such settings allow tailored instruction optimized for each child, delivered via a much lower student-to-teacher ratio. In reality, many of these classrooms are hampered by a highly heterogeneous array of special needs that are hard even for the most talented, dedicated teachers to address simultaneously, and by the often highly unrealistic expectation that the teachers focus, not on material within their students’ zones of proximal comprehension, but on the one-size-fits-all goals for all students that happen to have the same calendar age. This, naturally, has many special ed parents, not just FC parents, thinking that a general education classroom with an aide and lots of accommodations might be preferable.
What all this leads to, at least among the more well-resourced, aspirational parents, is a broader alliance with broader goals than just FC parents promoting FC. And the bigger picture, in many quarters, is a Lake Wobegon scenario in which all the kids are above average.
It’s just that some of these kids need extra support and facilitation in order for this to come to light.
REFERENCES AND FURTHER READING
Beech, M. 92010). Accommodations: Assisting Students With Disabilities. Learning Systems Institute Florida State University Bureau of Exceptional Education and Student Services Florida Department of Education Third Edition. https://files.eric.ed.gov/fulltext/ED565777.pdf
Florida Department of Education Bureau of Exceptional Education and Student Services and Division of Community Colleges and Workforce Education. (2005). Accommodations and Modifications for Students with Disabilities in Career Education and Adult General Education, https://cdnsm5-ss15.sharpschool.com/UserFiles/Servers/Server_70176/File/Academics%20&%20Curriculum/Subjects/ESE/ese311201_acmod-voc.pdf
Hipsky, S. (2011). Differentiated Literacy and Language Strategies for the Elementary Classroom. Pearson.
Strauss, V. (2015, March 20). ‘You do not speak for our children.’ The Answer Sheet. Washington Post.
