New film’s noble aims are gutted by the pushing of pseudo-science
Film Review
By Jill Escher
The new film The Reason I Jump, due for release on January 8, is a multifaceted adaptation of a best-selling book ostensibly written by Naoki Higashida, a 13 year-old Japanese boy with autism.
I say ostensibly because at the time it was published in English I searched for evidence that the book was indeed written by the autistic teen, but came up empty. Autism experts also strongly questioned the validity of the authorship (see Fein and Kamio 2014). So I was relieved to learn of this new documentary because finally, I thought, we would have the chance to see the author typing or letterboarding his poetic words.
But no. No Naoki. The protagonist, about whom there remains much controversy, was conspicuously missing from the film. Instead we have an adorable young actor with autism who runs and squints and explores as a narrator reads passages from the book. We also meet the book’s English language co-translator and popularizer, the acclaimed British novelist David Mitchell, who is the father of a boy with autism, as well as five young adults with autism whose stories the filmmakers loosely weave into the book’s narrative about a hypersensitive, secretly talented and processing-disorganized inner life with autism.
Along this journey we are asked to simply take it on faith that Higashida (and not, say, his parent or facilitator) authored the book. This struck me as absurd until I realized the film was not in reality a documentary adhering to any norms of journalistic standards but instead an act of heartfelt propaganda. This leap of faith required of the viewers is foundational to the fim’s mission: to convince you that despite what you see on the surface, you must suspend your disbelief and see nonverbal autism as a sensory-motor deficit masking fairly normal cognition.
If only we ignored patent impairments and presumed normal cognition! If only we taught our kids to point to letterboards to spell out complex thoughts! Then we would stop systematically suppressing our children’s inner genius, the film suggests. And in this battle for a transcendent neurodiversity, actual evidence hardly matters.
Now, it goes without saying that spreading the gospel of autism acceptance and lauding achievements of people with autism are unequivocally Good Things. We are fortunate, for example, to meet an exceptionally talented young artist from India named Amrit who creates colorful, joyous tableaus of people, drawn with a tightly controlled expressiveness. But the film also celebrates debunked and discredited facilitated communication, recently enjoying something of a spiritual revival under labels such as Spelling to Communicate or RPM. It insinuates that parents who fail to “presume competence” are somehow oppressive and failing their disabled children. It sells autism as a type of locked-in syndrome or large-scale apraxia, a wishful-thinking assertion that flies in the face of logic and decades worth of evidence.
Aside from the absent Mr. Higashida, the uncritical embrace of facilitated communication was most evident in the portrayal of two friends in the U.S., Ben McGann and Emma Budway, and an interview with Elizabeth Vassoler, founder of Spelling to Communicate. Emma’s mother is shown holding a letterboard and prompting the two young adults to answer questions about Argentine history. Ben, who is a board member of the Autistic Self Advocacy Network, taps repeatedly on the board while Emma’s mother reads out letters (which may or may not correspond with Ben’s tapping, as it struck me that there were more taps than letters read) which spell out that his civil rights were denied when he was in special education.
Now, are Ben and Emma actually expressing complex thoughts independently? Perhaps they were — every person with autism has a different range of competencies — but my point is that you really can’t tell. For example, that Emma spells out “WIFE” in response to a question about Eva Peron could have been practiced off camera, it could have been prompted by how her mother held the board, it could have been cherry-picked from among other takes that were less successful. We are not given enough information to reach conclusions.
Given the sordid history of outright fraud in facilitated communication (FC), a practice that resulted in false criminal accusations against parents, the deprivation of autistic subjects of their true voices, loss of out of pocket costs for desperate parents, and outright condemnation from the American Speech Language Hearing Association (which likewise has taken the position that Spelling to Communicate lacks an evidence base), it behooves us in the autism community, not to mention any responsible filmmaker, to start from a place of healthy skepticism. Why does a facilitator have to hold the letterboard? Why can’t the spellers point to letters fixed on a table or music stand? Why can’t other people, say one of the film crew, hold the board instead? The director did not even scratch at the surface, instead he simply diverts our attention, and emotions, with dramatic background music. Moreover, this second wave of FC is notorious for resisting attempts to objectively ascertain the independence of the spelling, perhaps in light of how easily tests as simple as blinding the facilitator exposed the fraudulence of FC in the past.
Of course many people with significantly disabling autism and related disabilities can independently communicate through typing or assistive communication devices, such as those using graphical icons. I would never criticize independent communication. My concern here is only with the facilitated aspect. I have even defrauded myself on this account. My precious nonverbal daughter had learned to write her name independently so I thought she would be ready for more. With only the lightest possible touch on her arm she spelled “DOG,” “CAT,” “PIG,” and similar. So after much practice when it seemed she had mastered such words I removed any touch, and very carefully and clearly, with visual cues, asked her to spell them. She wrote “SOPHIE,” “SOPHIE,” and “SOPHIE.” I learned that even the very lighest of prompts can radically change output, a phenomenon documented numerous times in the scientific literature.
To be fair, the film has certain notable strengths. For example, a visit to a gutsy family in Sierra Leone fighting a culture that saw their disabled daughter Jestina as a devil child, though narratively disjointed from the rest of the film, was a clear highlight (indeed this topic deserves a film of its own). In addition, a young British man named Joss, whose parents are two of the film’s producers, is shown with his full autistic impairments on display, and with an admission he had to be placed in a care home due to aggression. When Joss’s father chokes up sharing his fears about Joss’s care after their deaths, he speaks for all us autism parents facing the same horrific predicament. Additionally the film’s creative attempts to invoke the chaotic audio-visual world of autism are commendable.
At the end, we see Ben and Emma preparing to move into their own independent living apartments, seemingly bringing some closure to the “what happens when we’re dead” question invoked by Joss’s father. But on this account the film fails us again, as we are provided no information whatsoever about the arrangement, how it was achieved, how the supports operate, who is paying, etc. As with most of the film, we are fed grandiose ideas, vibrant cinematography and an emotional musical score, but little of substance.
[You can learn about opportunities to view the film here.]
Jill Escher is the President of the National Council on Severe Autism, an autism research philanthropist, a housing provider to adults with autism, and the mother of two children with nonverbal forms of autism.
References and resources:
American Speech Language Hearing Association, Facilitated Communication and Rapid Prompting Method: CEB Position
https://www.asha.org/ce/for-providers/facilitated-communication-and-rapid-prompting-method-ceb-position/
Donvan J, Zucker C. In a Different Key. 2016 Crown Publishers, New York. (See Chapters 33, 34 documenting past abuses of FC.)
Fein D, Kamio Y. Commentary on The Reason I Jump by Naoki Higashida. J. Developmental & Behavioral Pediatrics 2014;33(8): 539-542. (Here, unfortunately paywalled but you can read the first page.)
Mostert M. Facilitated communication since 1995: a review of published studies. J Autism Developmental Disord. 2001;31:287–313. (Here, but unfortunately paywalled. The abstract reads: “Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents' claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended. However, while FC is less prominent than in the recent past, investigations of the technique's efficacy continue. This review examines published FC studies since the previous major reviews by Jacobson, Mulick, and Schwartz (1995) and Simpson and Myles (1995a). Findings support the conclusions of previous reviews. Furthermore, this review critiques and discounts the claims of two studies purporting to offer empirical evidence of FC efficacy using control procedures.”)
Schlosser RW et al. Rapid Prompting Method and Autism Spectrum Disorder: Systematic Review Exposes Lack of Evidence. Review Journal of Autism and Developmental Disorders, 2019. https://doi.org/10.1007/s40489-019-00175-w. (Here, but unfortunately paywalled. The abstract reads: “This systematic review is aimed at examining the effectiveness of the rapid prompting method (RPM) for enhancing motor, speech, language, and communication and for decreasing problem behaviors in individuals with autism spectrum disorder (ASD). A multi-faceted search strategy was carried out. A range of participant and study variables and risk and bias indicators were identified for data extraction. RPM had to be evaluated as an intervention using a research design capable of empirical demonstration of RPM’s effects. No studies met the inclusion criteria, resulting in an empty review that documents a meaningful knowledge gap. Controlled trials of RPM are warranted. Given the striking similarities between RPM and Facilitated Communication, research that examines the authorship of RPM-produced messages needs to be conducted.”)
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