"Nothing about us, without us."
To the parent autobiographer whose focus involves a child with autism, this motto — sometimes termed anthem, populist slogan, or political principle — presents a particular challenge within the tradition of the personal narrative. After all, parents inevitably pen their own perspective, even when including the voices of a son or daughter or excerpts from published books or blogs of other individuals on the spectrum. In other words, fathers and mothers represent autism through finding language and form for their personal experiences, affirming or refuting research, and selecting and framing viewpoints of those with autism. In doing so, they participate in the vulnerable task of self-revelation and polemic. However, to see the personal or "first-person" narrative as solely individual or singular is uniquely problematic in connection with autism. Parent memoirs, after all, arise from relationships with sons or daughters who may not be able to employ language to communicate. The dilemma of any nonfiction author writing about family, the reality that others do not ask to be represented in print, gets magnified. Moreover, these representations participate in cultural "stories" of disability — whether intentionally or not — and thus may reinforce and/or undercut dominant paradigms.
So how might such a parent memoirist deal with the task of representation? In the realm of the writing workshop, the answer is often a simple one: an author's primary responsibility is to render his or her own experiences with an unblinking accuracy. In this line of thinking, the story is not strictly "about" the son or daughter, though the child may be described in some detail; as noted, it is about a parent's understanding of his or her child. In James C. Wilson's Weather Reports from the Autism Front: A Father's Memoir of His Autistic Son and Michael Blastland's The Only Boy in the World: A Father Explores the Mysteries of Autism, however, we could argue that their negotiation of the art and politics of representation resists such absolute principles and results in questions or doubts rooted in the complicating realities of meeting across different ways of knowing. In the end, it is worth asking whether any absolute declaration — the unqualified (and thus unnuanced) assertion of authorial privilege or the forceful anthem of autism activism — can be embraced by fathers who honor the integrity of diverse, sometimes conflicting positions.
With Wilson's Weather Reports from the Autism Front, we have a memoir that does not overlook the hard circumstances of parenthood while embracing a neurodiversity philosophy. What recommends this book, what distinguishes it among the many parent narratives on autism, in fact, is its consistent integration of writing by people on the autism spectrum — the "canonical" works of Temple Grandin and Donna Williams and, even more fully, advocate and activist websites and blogs by Amanda Baggs, Kassiane Sibley, Joel Smith, Sue Rubin, and others. Wilson's narrative impulse is almost always to illuminate experiences through the inclusion of his son Sam's voice and the perspective of other "aspies" or "auties."
In "Self-Injury," a chapter that exemplifies the book's narrative method, Wilson turns to one of the most worrying aspects of autism: self-injury and physical aggressiveness. While these challenges represent an ongoing reality for father and son, Wilson devotes one section to Sam's pattern of head-banging — sparked by a change in routine, added stress, or, at times, without any clear cause. Drawing his son's bath after a particular incident, he tells of watching Sam sink into the bubbles, of pouring water over his head, of cleansing his wound with a Betadine solution. It is easy to forget that such moments, delivered in his book with directness and without sentimentality, still convey the vulnerabilities of both father and son. The lifting of the veil to reveal love and regret, after all, captures the space of a simultaneously painful and healing ritual between two adult men. Wilson quickly follows this poignant witnessing with a question ("Why do so many autistic people intentionally hurt themselves?") and then a typical transition: "To find an answer I launched an extensive online search, reading every blog, article, and interview transcript I could find of autistic people talking about self-injury" (71). Wilson invites readers to recognize that enough self-reporting from the spectrum exists to suggest answers that his son himself might not be able to provide, something few parent books do. From his personal experience and the views of Baggs, Rubin, Williams, and others, Wilson offers an intriguing theory of autistic communication: embodied language. "Williams and many of the autistic bloggers," he writes, "discuss self-injury as a kind of embodied language," i.e., "[a] form of communication that provides a second language for autistic people, much the same way that American Sign Language provides a second language for the Deaf community" (73). Of course, such speculation does not ease the predicament of the parent — which Wilson captures at the chapter's conclusion. What is a father to do in the face of such communication acts if they can lead to harm, even death in extreme instances?
Throughout the book, Wilson also captures what sometimes gets overlooked or sentimentalized in recovery or "cure" stories: the not easily resolvable tension between respecting his son's independence and his own need to provide assistance. His insights are hard-edged and hard-won, producing what the back cover shrewdly describes as a "realistic, irreverent account" laced with "enlightening truths as well as sardonic humor." Thus, in the chapter "Resentment," the discussion honors the mutual frustrations of a twenty-six year old who has labeled his father a "geezer" and of the sixty-year old who endures the embarrassment of an adult son's barking at a local Kroger's store. Such humor invites readers to exit the realm of sound bite and embrace ongoing, sometimes bone-wearying family tensions. In this instance, he asks that we acknowledge his son's personality in the biting humor, allow for the very real power imbalances between caregiver and caregivee, and still glimpse the fact of his own "shell-shocked" life, i.e., family stress that makes a vibrating phone feel "like a jolt of electricity from a taser gun" (184). In this image, Wilson succinctly communicates the visceral reality of one dimension of a life with autism for both son and father: the potential chaos that comes from sudden and sometimes unexpected causes.
Still, as with any narrative on autism, the selection of voices and incidents can leave gaps. In addressing the matter of electronic supports and facilitated communication for those on the spectrum, for instance, Wilson conveys the perspective of people who have benefited from this assistance. In doing so, he underscores the important truth that "not having the ability to speak does not necessarily mean not having the ability to communicate" (118). Focusing solely on the successes of this mode of communication, however, misses a range of essential viewpoints: those on the spectrum whose civil rights have been violated by facilitators who communicate false messages, including allegations of physical and sexual abuse by parents or caregivers. In these instances, the voices of those not on the spectrum — family members devastated by abuse allegations and researchers in the field — seem central, especially if someone with autism cannot verbally express the violation. In this case, the book's apparent skepticism toward traditional inquiry shown in the relative absence of conventional scholarship, though understandable given the aim to incorporate overlooked voices, leads to a two-dimensional rendering of a complex legacy.
For those who embrace Wilson's citing of those on the spectrum and the neurodiversity philosophy evoked by and invoked in Weather Reports, The Only Boy in the World may offer a bumpy ride. In his opening chapter "Fascination," Blastland writes that his son Joe "shares few of our pleasures, has many perplexing eccentricities, and isn't someone you'd instinctively turn to for enlightenment" (1). Later, he gives emphasis to what his son cannot apparently learn and lacks. Though this selection from his initial section misses necessary nuances, it does bring forth how the book imagines a neurotypical reader in the pronoun "our" and employs an "ableist" perspective in underscoring Joe's deficits. In addition, unlike Wilson, Blastland seeks understanding in the current research on autism and philosophy of mind rather than in the self-reporting of those on the spectrum. Thus, for instance, he leans heavily on the work of Uta Frith and Simon Baron-Cohen, especially the notions of mentalizing and mindblindness. According to these ideas, people with autism do not have the neurological wiring to conceive of other minds. As a result, what Frith describes as an autistic incapacity to "predict relationships between external states of affairs and internal states of mind" (Autism: Explaining the Enigma 77) can be seen as explaining the DSM-IV triad of impairments, i.e., impairments in social interaction, communication, and symbolic or imaginative play. As noted in Weather Reports (123-124), however, this current and pervasive explanation of autistic cognition has begun to be critiqued by those who supposedly lack theory of mind.
One significant paternal hitch is that, in thinking in terms of deficits, in defining Joe against or distinct from "normal" behaviors, ranges of emotions, and interests, Blastland has positioned his son outside what it means to be human — a quandary that he directly confronts in the second to last chapter. "If I accept the argument of philosophers that we define ourselves as humans not in the Linnaean fashion by our appearance but rather by what goes on in our heads," he confesses, "then I'm forced to a grim conclusion: Joe, my son, does not qualify" (183). In many respects, Blastland enacts a not unusual stage in a parent's understanding of autism; he frames questions in relation to his son's behaviors through a neurotypical lens and privileges scientific and philosophical frameworks in seeking answers. Not surprisingly, he gives voice to this dilemma as a conflict between head and heart: "I confess, as I said at the outset, that this problem gives my head some trouble, though my heart — following a less ponderous course — couldn't care less for my head's pretentious scruples…. And yet I would like to reconcile heart and mind, in favor of my heart naturally, but preferably with something approaching intellectual respectability. How to do it?" 184). Thus, the book captures ongoing and profound conflicts. What is the place of theory in understanding a specific child? When theory and personal observation do not coincide, how does a father reconcile the conflict? How does one accommodate the authority that comes from the intimate, singular case and from formal, collective study?
Perhaps the answers arise in what still makes The Only Boy in the World an illuminating and valuable book. For many readers, it enters the narrative space left uninvestigated or unaddressed in Weather Reports. That is, the memoir directly considers prominent research in ways that do not solely "other" his son. In other words, though problematic to some in the autism community, the notion of mindblindness — unfortunately named — leads Blastland to think of Joe as processing the world differently and reorients his own perceptions in ways that build the foundation for living with neurodiversity. In the "Postscript," then, the book echoes what Frith herself introduces in her second edition of Autism: Explaining the Enigma: those on the spectrum may be revealing a different cognitive style. Writing that a "fascinating current in these ideas is the tendency to talk about difference rather than deficit," Blastland goes on to say that "[t]his is a great leap in attitude that builds on Uta Frith's idea that some aspects of autism are a matter of cognitive style and is as big an innovation as there's been in sixty years of autism study; long overdue, in the view of some campaigners who resist talk of a cure for autism" (201). To conclude the book, the "Postscript" quotes at length a "satirical discussion of the problems" of NTs, or neurotypicals, from the aspie website WrongPlanet.net before turning to the image of Joe's joyful celebration of a successful badminton shot. Though perhaps an overstatement, it is nonetheless useful to suggest that Blastland's narrative journey ends at the place where Wilson's begins.
Though differently from Weather Reports, then, Blastland's text fully captures in curious and compassionate prose the emotional tenor of his life with his son. In the second chapter "Obsession," for example, the book conveys as well as any published parent narrative the life-consuming depth and breadth of a fixation. In this instance, it is a familiar one: videos. What makes this section so poignant is that Joe's need to watch favorite tapes literally endangers him. That is, it leads to frequent escapes from his home into neighbors' houses, to being hit by a car, and, potentially, to his very limiting and uncontrollable desire to watch and rewind favorite videos — at the very devastating cost of mutually-nurturing relationships. Narrated with a humor that captures parental weariness, amazement, and, at times, a kind of paradoxical pride in such tenacious focus, the book discerns the despair and desperation that leads to Joe's placement in a school away from his mother, father, and sister. Thus, The Only Boy in the World depicts the early years of autism when fixations and sensory issues may call for heart-rending decisions and the need for uncommon community resources.
In his chapter "Representation Politics," James Wilson begins in the same place as this review: "Nothing about us, without us." In doing so, he foregrounds the debate that is transforming the conversation about and narratives of autism. In drawing from the "autie" and "aspie" blogs, he cites one rendering of the discussion in the autism community from an Autistic Bitch from Hell post: "One faction, which she refers to as the 'pride faction,' sees autistic people as a social minority and stresses the importance of positive language and inspirational role models. The other faction, which she calls the anti-elitists, maintains that there are genuine difficulties associated with autism and that focusing too much on pride and accomplishments could result in discrimination against or lack of services for less fortunate autistic people." For Wilson, the dialogue among the bloggers affirms a clear fact: "So much for the idea of a monolithic autism community" (176). The same can be said of the broader community of parents and families who live with a son or daughter, grandson or granddaughter, brother or sister on the spectrum.
It is essential, then, to foster communal stories that give voice to the wide array of lived experiences, joyful and stressful; that acknowledge the power dynamics that disenfranchise and silence the disabled; that recognize such dynamics can lead to actual injury and death; that grant the place of alliances between people on and off the spectrum; that speak of the fact that parents and caregivers also experience physical injury at the hands of their sons and daughters. This larger story of autism is not an "either-or" proposition; it is not a dialogue of "yes-but." Rather, it points to the need for an inclusive representational politics — and, by inclusive, I do not mean to imply a false or naïve belief that currently all members of this broader autism community experience the same opportunities. It is hard to imagine a hopeful and satisfying future for those on and off the spectrum — whether in the home or broader community — without the feeling that the house stands on the foundation of an inclusive "us." Parents and their sons and daughters on the spectrum cannot afford inflexible principles or a divisive politics when it comes to the realities of autism.
As with memoirs, reviews, too, can fall victim to their own narrative momentum, leaving gaps that demand gestures to the next tale and voice. In considering self-injury, fixations, and representational politics, I create a contentious space, so to speak, and thus a face of father and son with jaws tight. It is perhaps best, then, to end with another image as a reminder that the story is large. Writing of his son's favorite time and place, the family's vacation at Florida's South Beach, Jame C. Wilson evokes what parents of those on the spectrum will often hold out to friends and in memory. "Photos taken of [Sam] there," he notes, "show an incredibly relaxed, comfortable demeanor." He explains: "There's something else about South Beach that makes it so good for Sam. It's the diversity, the cosmopolitanism. With diversity comes a freedom from conventional attitudes and values, a freedom that Sam finds liberating. For a week he's free of the stigma of being autistic and disabled" (167). Though shining light on the forces that create jaw-tightening stigmas, Weather Reports from the Autism Front and The Only Boy in the World still capture the renewing realities of sons at home in the world. Personal and collective good demands such images.