CHD Book Club: Underestimated: An Autism Miracle

The third selection (March 2023) in the CHD Book Club is “Underestimated: An Autism Miracle,” by J.B. Handley and Jamison Handley.

Generation Rescue’s cofounder J.B. Handley and his teenage son Jamison tell the remarkable story of Jamison’s journey to find a method of communication that would allow him to show the world that what a brilliant, wise, generous, and complex individual he was — previously misunderstood and underestimated by everyone in his life. Jamison’s emergence at the age of seventeen from his self-described “prison of silence” took place over a profoundly emotional and dramatic twelve-month period that is retold from his father’s perspective and punctuated by Jamie’s wisdom. Jamison’s remarkable transformation has challenged the conventional wisdom surrounding autism and ignited a revolution for nonspeakers with autism.

Here are some thought-provoking discussion questions to think about as you read “Underestimated.” In addition, we invite you to view our in-depth interview with J.B. and Jamie Handley on Good Morning CHD, Saturday, March 18, 2023.

Questions for Discussion

1. Autism is a spectrum disorder, and many with the diagnosis are much more severely affected by it than others; that includes J.B. Handley’s son Jamison Handley. Like Jamie, some 30–40% of people diagnosed with autism spectrum disorder (ASD) either do not speak at all or cannot use speech to reliably communicate their thoughts and feelings. Some autism self-advocates allege that autistic nonspeakers can speak, they simply choose not to. Does Jamie’s journey, as well as those of his “Dude-Bro” friends support that claim? Why or why not?
2. Elizabeth Vosseller, creator of the Spelling to Communicate method, says that speech requires a great deal of fine motor control, exactly the skill that nonspeakers with autism have most difficulty with. Language, on the other hand, requires only cognitive understanding. Vosseller maintains that even dramatic impairment in fine motor control does not imply impairment in cognitive understanding. Therefore, she uses gross motor movements, which are easier to control than fine motor ones, to access the intelligence previously locked inside of some nonspeakers. What do you think of Vosseller’s hypothesis and approach to communicating with nonspeakers?
3. How do you think Vosseller’s concept of “presumed competence” affects her clients? Is there any potential downside to approaching communication from that viewpoint?
4. Autism was first described by Leo Kanner in his 1943 paper in The Nervous Child, “Autistic Disturbances of Affective Contact,” wherein Kanner describes the unusual behavior of eleven children who were referred to his psychiatric clinic in Maryland. Three of these children had no language whatsoever, while eight learned to speak at some point along the way. Even the eight children who could speak, Kanner noted, did not use speech to communicate the way that neurotypical children do. Does Kanner’s original paper support Vosseller’s hypothesis? Why or why not?
5. Recent understanding has broadened the “autism” umbrella to include children who would previously have been diagnosed with Asperger syndrome, first described by Hans Asperger in an Austrian paper in 1944. Asperger’s clients, in contrast to Kanner’s, typically had no difficulty at all learning to speak. What advantages and disadvantages do you see to including such a wide range of symptom manifestation under the same diagnosis?
6. On its website the American-Speech-Language-Hearing Association (ASHA) equates S2C with Rapid Prompting Method (RPM) and says, “With RPM, you can’t tell whether the words being spelled out belong to the autistic child—or to their aide. The aide holding the alphabet board may move the board unintentionally in the direction of the letter that they think the child should select next.” Do you agree or disagree with the statement that “you can’t tell” whose words are being spelled? Could you design an experiment to determine whose words are being spelled?
7. “RPM,” says ASHA, “effectively strips people of their human right to independent communication because the technique relies on an aide for prompting. This reality raises a host of questions, concerns, and possible dangers. With RPM, children miss out on critical services tailored to their needs, jeopardizing their development, education, and autonomy.” Do you agree or disagree with ASHA’s assessment of S2C as “dangerous” because it keeps children from “critical services tailored to their needs”? Why or why not?
8. Do you think ASHA has a bias that unfairly influences their assessment of S2C? If so, what do you think is the basis of that bias?
9. J.B. mentions a recent article in Nature, “Eye-Tracking Reveals Agency in Assisted Autistic Communication.” How does this paper support the idea that people who communicate via the letter boards that S2C uses to begin communication efforts are actually communicating their own thoughts and ideas and not those of their assistants?
10. At the beginning of Underestimated, we see that Jamie has some disturbing behavior patterns. He bangs his head when agitated, potentially causing permanent head injury. Jamie is having weekly “incidents” when he must be picked up and removed from school. After Jamie learns to communicate his wants and needs, the self-harm incidents disappear. A 2016 study indicates that 68% of individuals with ASD have a history of aggression toward caregivers, and 49% had a history of aggression toward noncaregivers. Only 15–18% of adults with intellectual disability, on the other hand, were found to exhibit aggression. Given Jamie’s history, what effect do you think the inability to communicate may have on aggressive behavior in people on the autism spectrum?
11. During the course of S2C work, spellers’ fine motor control improves. Spellers progress from using three letter boards, to one letter board, and eventually to a keyboard. Some spellers reach a point where they no longer need an assistant to communicate. How does this support or refute ASHA’s assessment of assisted communication?
12. All of the spellers introduced in “Underestimated” exhibit a strong urge to advocate for other nonspeakers. Do you think the ubiquity of this urge to advocate is just a coincidence among Jamie’s friends, or is it a thread that runs throughout disability communities, in general, or the autistic nonspeaking community, in particular?
13. Half of the teachers at Jamie’s school, Victory Academy, are “BCBAs” (Board Certified Behavior Analysts) trained in Applied Behavioral Analysis (ABA), which is often billed as the only “evidence-based” therapy for autism. As a therapy focused exclusively on behavior, however, ABA is often criticized for being little more than the sort of behavioral training people might do with their dogs. Did you know about ABA before reading “Underestimated”? If so, does Jamie’s journey change your opinion of it?
14. The BCBAs at Jamie’s school refuse to use S2C in their classrooms, despite the obvious and unprecedented leap forward that Jamie made in both behavior and ability to communicate while using it. What do you thing of that decision? What factors do you think go into such a decision?