One Big Thought Experiment: Review of “The Reason I Jump”
In his introduction to the book The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, David Mitchell asks that readers follow along with a thought experiment: an imagined trip into the mind of an individual who cannot speak. He wonders, as a father of a child with profound autism, what life might be like for these individuals. How, for instance, do they cope with the sights and sounds of daily living with no way to put into words their own, individual experiences?
Letter board used during facilitated communication sessions between Naoki Higashida and his mother (facilitator). (The Reason I Jump, 2007, 2016)
The Reason I Jump was, most likely, facilitated, as the text describes (without calling it FC) and this commentary discusses at length. Knowing this, all I could imagine during the thought experiment was how helpless a parent must feel in watching their child head bang for the umpteenth time, flap fingers in front of their eyes at high speed with total absorption, and cry inconsolably for hours on end over a change in routine and what they might do to cope.
Mitchell writes:
Autism is no cakewalk for the child’s parents or carers either, and raising an autistic son or daughter is no job for the fainthearted—in fact, faintheartedness is doomed by the first niggling doubt that there’s Something Not Quite Right about your sixteen-month-old.” (p. X)
That, I believe, is true.
The Reason I Jump is a lengthy Q&A, presumably between Naoki Higashida and his mother (facilitator). Mitchell and his wife, K.A. Yoshida, were so enamored with the story they translated the book and later helped make it into a movie.
To me, the book does not represent the inner voice of a thirteen-year-old boy, as I will explain, but a continuation of Mitchell’s thought experiment: the imaginings of a mother faced with raising a child with profound autism. She asks a lot of questions and then, through facilitated communication (FC), proceeds to answer them.
To be fair, Naoki’s mother asks the questions any caring parent would ask in this situation. I can only imagine her worry, frustration, and concern as she asks: “Is he never going to learn?” “Why do you do things you shouldn’t even when you’ve been told a million times not to?” “Why don’t you wear shoes?” “Why are you always running off somewhere?” and “What causes panic attacks and meltdowns?”
In fact, there are 58 main questions in the book, with a smattering of others within the text. The questions cover a range of topics: characteristics of autism, behaviors, academics, social acceptance (or lack thereof), communication, language comprehension, and (perceived) internal thoughts of an individual with profound autism.
In all sincerity, the questions Naoki’s mother poses are a great start for critical or scientific inquiry. Even some of the speculative answers contained within the book could be seen as valuable information-gathering for further study. Several times in the book, readers are implored to understand that individuals with autism have feelings and should be treated with compassion. This, quite genuinely, speaks to how far we have to go as a society in accepting people with a wide range of physical, intellectual and emotional needs.
Reading between the lines, I also view the book as a cry for help where support is sadly lacking. There are several passages where Naoki apologizes (via FC) for making things difficult for his caregivers. He begs for them not to give up on him.
Parents face endless days caring for children with aggressive and impulsive behaviors. They are faced with trying to console their children who may lash out by biting, punching, scratching or bolting from the house—unpredictable actions that put themselves and others in danger. I suspect it’s not just individuals with autism who feel isolated, frightened and alone under these circumstances. FC appears to give parents a way to talk about these feelings through their writing.
The Reason I Jump is often included on proponent lists as “proof” that FC works. Despite this, along with Mitchell’s enthusiasm and the mostly uncritical acclaim of the book, the information contained within it is not proof of independent communication. The only thing that can be said for the writing is that Naoki somehow contributed to typing out the words while his mother provided visual, tactile, and auditory cues.
To believe the facilitated words are Naoki’s means accepting that a 13-year-old boy, when asked why he liked being in the water, answered:
People with autism have no freedom. The reason is that we are a different kind of human, born with primeval sense. We are outside the normal flow of time, we can’t express ourselves, and our bodies are hurling us through life. If only we could go back to that distant, distant watery past—then we’d all be able to live as contentedly and as freely as you lot. (p. 72)
Most people I asked in an informal poll said, “I like to swim.”
And, when asked about his thoughts on autism, Naoki responded (via FC):
Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And, if by our being here, we could help people of the world remember what truly matters for the Earth, that would give us a quiet pleasure. (p. 110)
Personally, I believe people with autism are people and not prophets, time travelers or alien beings.
It is not possible to evaluate Naoki’s language comprehension skills or his reading or written language abilities from reading this book. Watching the few, carefully edited videos of him being facilitated online raises questions about authorship, but again, does not reveal much else about his true abilities. As a person with profound autism, he may have some limited language and literacy skills. But, with the use of FC comes the increased (100%) chance of facilitator cuing and control of the typed messages. Mitchell and other promoters of the book want readers to ignore this fact and take the book at face value; in other words, to continue the thought experiment.
The speculative and sometimes misinformed responses in the book reveal multiple missed opportunities for further evidence-based investigation. Answers to these and the other questions posed in and raised by the book could lead to a deeper understanding of autism and treatment options, but, alas, believers in FC are content to leave the conversation as it stands. They have a tendency to stop just shy of knowing the truth about FC.
I had many questions about the extraordinary claims in the book, but for the sake of space, I’ve limited them to the following:
1) Are there known causes for impulsivity in autism and evidence-based treatments to help reduce these behaviors (especially if the impulsivity causes harm to the individual or others)? Are these impulses emotional (and, therefore “curable”) as implied in the book, or are there neurological (more permanent) factors that contribute to these behaviors?
2) Is there any evidence that individuals with autism avoid eye contact because, as claimed in the book, they are trying to “look at the other person’s voice” or that their sense of sight “zones out” when they’re listening?
3) Is there evidence to demonstrate that echoed speech is used by individuals to “play with words” (e.g., as a deliberate use of speech, rather than an impulse)? Would someone with echolalic speech, as in Naoki’s case, be able to consciously distinguish between echoed and non-echoed speech within themselves and discuss its nuances?
4) Is there evidence-based research discussing why individuals with autism show limited affect and/or facial expressions? Can they turn this off and on, as suggested in the book (e.g., use animated facial expressions only when no one is around)?
5) Why do people with autism have unusual speech patterns and difficulty with intonation and volume control? For example, Is there any evidence to show that variation in intonation is a result of not being able to “read a story and image the story at the same time,” as claimed in the book?
6) Doesn’t lack of eye contact impact language comprehension and literacy skills? This information seems to be missing from Naoki’s explanations. (See Joint Attention blog posts here, here and here).
7) Are the letters and symbols of written language really easier to grasp than spoken words, as claimed in the book? Can these be accessed simply by touching someone’s hand or holding a letter board in the air? Some individuals experience hyperlexia, but this ability to read words comes without comprehension of what is being read. How does language acquisition and comprehension impact the development of literacy skills? (These have to be taught).
I suspect that for many proponents of FC the non-facilitated answers to a number of the questions asked in The Reason I Jump are too time-consuming to research and/or too emotionally painful to accept. They take solace in the more immediate facilitated words even if the answers are just thought experiments.
As Mitchell states:
The academic texts are denser, more cross-referenced and rich in pedagogy and abbreviations. Of course it’s good that academics are researching the field, but often the gap between the theory and what’s unraveling on your kitchen floor is too wide to bridge.” (xi)
In this regard, the book felt very much like a self-soothing activity of a mother struggling to cope with the exhausting and exhaustive process of raising a child with profound autism. FC is immediate and, for facilitators at least, a rewarding activity.
I can empathize with people wanting FC to work and understand its allure as a coping strategy. FC does have a strong, psychological appeal, but that does not make its use ethical or evidence-based.
I find it less palatable when pro-FC books like The Reason I Jump, Ido in Autismland, and I Am In Here are promoted not as anecdotes and testimonials, but as evidence-based proof of authorship. The echoed phrases from facilitators who’ve read these books (e.g., “I am a bird freed from a cage”) demonstrates just how influential these books have been in shaping the FC narrative regarding autism. It bothers me that promoters are claiming a paradigm shift based on a relatively small number of facilitator-generated books that disregard the evidence-based research demonstrating FC does not work as an independent form of communication. (See Controlled Studies and Systematic Reviews).
Less palatable, still, is the thought of individuals being subjected to FC and having to submit to endless hours of hand holding or pointing to a letter board on cue as their dependency on their facilitators increases. Being deprived access to legitimate, evidence-based forms of Augmentative and Alternative Communication means their authentic verbal and non-verbal communications are delegitimized or ignored altogether. I wonder what is really going through their minds, but facilitator-generated messages prevent us from the possibility of finding out.
Note: I think fact checking The Reason I Jump (the movie and the book) could be a great project for someone interested in evidence-based research who wants to take on a project.