Author Anne K. Ross relates that when she began working as a school psychologist in the San Francisco area three decades ago, autism was defined by the extremes of "body rocking and twirling, no eye contact, echolalia, tantrums, virtually no communication or social interaction." Popular culture tended to pigeonhole autistic people as savants, like the character played by Dustin Hoffman in the 1988 film Rain Man. Only recently has the public begun to accept that autism exists on a spectrum and that it requires early and sustained intervention. The superbly engaging memoir, Beyond Rainman, illustrates this understanding through the painful but humorous learning curve of Ross's own educated middle-class family which includes Ross, her wife, Patty; a neurotypical son, Spencer; and a son, Matt, who is ultimately diagnosed with Asperger’s syndrome (now classified as mild autism).
While there are many accomplished memoirs by and about autistic people—one recent example is Life Animated by journalist Ron Suskind— Beyond Rainman is unique because Ross ably wields the dual perspectives of mother and professional, showing from multiple perspectives what the disorder looks and feels like. As a professional, she observes children on the spectrum hovering at the edges of school playgrounds, while at home, her stomach tightens when she senses Matt getting stuck and angry. Rather than use a strict chronology, Ross dramatizes Matt's symptoms and the family's coping strategies through vignettes arranged into thematic chapters with titles such as "A Literal Mind," and "Routine." This approach makes for an accessible book one can dip into and out of easily, although occasionally I missed the sense of resolution that comes with the passage of time. This is a minor complaint, because each vignette contains satisfying amounts of depth and insight. Tragicomic lists sprinkled throughout, such as "What Was Normal/ What Was Not Normal" and "My Worries About Middle School" make the book read like an oft-comedic literary diary leavened with the latest thinking about autism.
The central poignant irony of Beyond Rainman is that Ross—the pen name for an award-winning writer and school psychologist—had volunteered with children who exhibited more classically recognizable autism but didn't at first recognize the pattern in her own son.
I never imagined…I would be a career school psychologist who would call the police on her own teenaged son, follow an ambulance carrying him to a psychiatric hospital, plan to send him away, and cry so hard all the muscles in my face ached.
Ross's vulnerability radiates compassion and highlights the stress presented by living with a child with autism or any complex social-emotional delay: if even a caring, enlightened professional is blindsided, how much more overwhelming it is for the untrained—never mind for the child him- or herself.
There is a "now you see it, now you don't" aspect to raising a child with non-physical special needs that is difficult to explain, and Ross captures this essence by juxtaposing mundane family moments—movie outings, skiing, corny jokes—with insights into Matt's difficulties. At first Anne and Pat think that as a preschooler, Matt is merely "independent" when he rejects physical touch: they wonder if it's just "firstborn syndrome." When they read about sensory integration disorder, the parents have an aha moment. But accommodating his tactile defensiveness, while helpful, doesn't make Matt's titanic meltdowns or cognitive rigidity go away. Even in the enlightened enclaves of San Francisco, they find themselves in a kind of borderland with Matt, who, despite his many strengths, loses friends and opportunities as time goes by. It's only when he's 11 that he receives the correct diagnosis. While he has continuing challenges, gratifyingly, by the end of the book, Matt is an independent young adult who is able to make incredibly insightful comments about his journey with Asperger's when his mother shows him her manuscript.
In the intervening years, the family, like so many others who deal with misunderstood disorders, suffered isolation. In stark contrast to more social days when they were "trailblazer lesbian moms," the family "had no dinner parties, no barbecues, no coffee dates. We didn’t get pizza with other families." At the same time, Ross experiences the grief of loving a child who can barely stand to touch her and doesn't return her "I love yous."
They also face the judgments of others who can misinterpret Matt’s coldness as lack of obedience or proper parenting. There are times when Matt shows compassion, even snuggles; these tender moments only make the scenes when he unravels more heartbreaking. One of the great strengths of this book is its unflinching portrayal of what it's like to parent a child who can become dangerously out of control. Matt smashes a glass picture; attacks his brother over something exceedingly minor; becomes unglued when his burrito is cut in half. In a rage, he at one point breaks the author's toe (unintentionally). Ross's relationship with her wife suffers, and their younger son, Spencer, at times lives in fear of his elder brother. Ross is grittily honest about her less-than-perfect reactions: she yells and says things she regrets; she wonders if at times she pushes Matt too hard to change. If it's important for mothers of neurotypical kids to have validation in the form of hilarious "bad mom" narratives (a la The Big Rumpus or Anne Lamott’s now-classic Operating Instructions), it's that much more so for those of who parent atypical children.
Humor, which Ross has in abundance, helps: it may be one of the best 'treatments' in raising a child who is literal to the point of driving everyone around him/her batty. Ross devises a "Grump-O-Meter" to describe her moods and help her son recognize emotion in others. A doctor asks Matt what day he was born, followed by what year: Matt replies, "every year." When Matt goes through a stage of constantly whistling like a "noon siren," as a reader I was laughing through gritted teeth, right alongside his mom. My own experience raising a neuroatypical child verifies that it’s the seemingly small daily shocks that create the most havoc, and in hindsight, if we're lucky, humor. Recently a regularly visiting therapist covered all the clocks in our home with post-it notes, because our child's perseverating on time was getting out of hand. The only problem was, the microwave oven timer was obscured, too, which confused the adults who went to reheat their coffee. There's a fine line between desperation and creativity.
No child on the spectrum is, of course, exactly or even roughly like any other, and tailor-made therapies are hard to come by. Ross conveys the near-impossibility of trying to find a therapist "who knew Asperger’s from asparagus." When one psychiatrist’s dog jumps up on Ross's family during their first visit, one begins to wonder who, in fact, needs the medication and the manners. Matt, for his shortcomings, is, on the whole, bright and likable. The family tries everything from Brain Gym exercises to 1-2-3 Magic and Willbarger brushing, and Ross wonders if, some day, some of these treatments will be considered as wacky as the medical use of leeches. One of the many therapists the family sees promises Matt five dollars if he goes a week without a tantrum. "We paid $195 for that?" the author says; her wife replies drily, "Don’t forget, we'll get $5 of that back." The shared, desperate, laughter was painfully familiar to me.
Some of the family’s isolation is "self-imposed," Ross says, but surely some stems from a society that still just doesn't get it. Her book makes this crystal clear without expostulating: true to the form of memoir, the intimate details speak louder than any position paper could about the need for autism awareness and support. At a meeting in her role as school psychologist, Ross describes confronting the clinical psychologist, who refuses to acknowledge that a fifth-grader has symptoms of autism:
More kids are being missed—undiagnosed or incorrectly diagnosed—than are being over-diagnosed with an autism spectrum disorder. Every school year I see a half dozen middle school and high school students who clearly fall somewhere on the spectrum but whose parents or physicians still hold onto a salad diagnosis: a handful of ADHD, a dash of obsessive compulsiveness, a sprinkling of pragmatics disorder, dressed with anxiety, and with a side of stubbornness.
This hard-won observation serves as powerful antidote to the forces of denial, whether personal or societal.
As a mother who has spent more than her fair share of time in IEP (individualized education program) meetings and psychologists' waiting rooms, I cheered at Ross's clear-eyed message: at home and in schools we ought to be more vigilant about identifying spectrum disorders—yes, helicopterish, if you will—not less. We need more voices, like Ross's, to advocate for awareness with levity and understanding.