Jill Escher is the mother of two children with nonverbal autism, a provider of low-income housing for adults with developmental disabilities, and president of Autism Society San Francisco Bay Area, a nonprofit focused on the mounting adult autism crisis. This is her second book review (the first one dealt with Steve SIlberman’s Neurotribe).
New memoir captures moments of searing anguish and joyous transcendence for an autistic boy and his mother.
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By Jill Escher
To quote Oprah at the Golden Globes, “Speaking your truth is the most powerful tool we all have.” But when it comes to autism, agonizing truths are often buried under mounds of socially palatable euphemism, or locked inside homes where family members are barely able to survive, much less write a book. So when a work comes along that deftly shares agonizing scenes of a family besieged by severe autism we should all pay attention.
In Autism Uncensored: Pulling Back the Curtain, author Whitney Ellenby throws the door wide open for all to see, in vivid detail served with layers of emotional turbulence shifting atop like clouds on a changeable day. We see the ripped up books, hear the tantrums, and feel the bites. She does not expose her family’s narrative for any mean-spirited or weird voyeuristic purpose, but rather to explain the choices she’s made with respect to her son Zack and to seek understanding and true acceptance based on lived experience rather than the sanitized autism fantasies trending in the media. Indeed, she says she explicitly set out to write an “antidote to the recent swell of sugar coated mainstream portrayals that bear no resemblance to reality.”
In TV fantasyland autism might be the brilliant Good Doctor, but in countless homes across our country, profound neurodevelopmental disorders labeled as autism can result in, to borrow Ellenby language, “a kaleidoscope of horrors.” I’ve seen the bruises, bite marks, shredded upholstery, punched-out plaster, ruined carpets, broken chairs, shattered windows and shower doors. I’ve seen parents with PTSD, broken and at the end of their rope, with jobs lost and marriages in tatters, simply hoping for nothing more than to survive another day. If we strive for honest awareness and acceptance, with the ultimate goal to optimize research, opportunities and policy, this sector of the autism population must be heard.
In its truthiness, Uncensored offers several particularly satisfying messages.
1. The book nails the phases of grief and coping often seen in autism families
Ellenby structures the book in chronological order, starting from her pre-Zack life as a disability rights attorney (cue Twilight Zone music for this bit of foreshadowing), to his 7th year. Her personal experiences parallel those commonly seen in autism families, and many parents will have a “me too” feeling as they venture through her phases of grief and coping:
- In his infancy, she develops a gut feeling something is wrong.
- Followed by the crushing moment and “frantic alarm” of the autism diagnosis, and an ensuing flood of utter disbelief.
- The rage, and finding no answers as to how this could have happened given the “absence of any rational explanation.” Waves of self-blame and cycling through potential culprits before dismissing them all.
- The endless daggers in the heart as other kids skyrocket past hers.
- Various forms of wishful thinking and false hopes and desperately trying to help her child, whose learning incapacities become more apparent by the day. Spending vast amounts of time, money, and emotional energy on behavioral interventions.
- Exhaustion, chronic strain, pressure on the marriage. Horrifically difficult behaviors including fecal smearing, massive meltdowns, savage bites. Here’s one glimpse into their daily lives: “In the meantime all frivolous photos and other adornments to Zack’s room have been stripped from the walls because he has ripped and shattered them into bits. No use repainting his walls which are permanently stained from fecal smearing because he’ll just defile them again.”
- Finding behavioral interventions causing much stress and expense with little benefit; growing resentment about the myths and over-selling of interventions. Anger about the continued, if subtle, culture of parent blaming that persists in the autism world that suggests, “You just aren’t doing enough to help your child.”
- Seeing the innocence and sweetness of the child who acts impulsively due to his mis-wired neurology, not due to any pre-meditation or bad character; respecting the stimming and his sensory needs. Wanting to find a better way.
- The second child panic—would this second pregnancy also result in a child with autism, given the sharply increased risk in younger sibs? (Spoiler alert—Ellenby’s second child, a daughter, developed typically.)
- Struggling to find a way—any way—to live with severe autism. Shifting gears away from dead-end interventions, and instead seeking a fuller life, a “way out of the darkness” and painful isolation.
The latter part of the book focuses on that last phase as Ellenby strives to find a new way for her son to break free of his mental loops and phobias, and live a larger life. More on that below.
2. The book is not about “autism”
Personally, I am done with the word “autism.” If the same word can encompass a profoundly impaired boy like Zack and also a highly articulate college professor like Temple Grandin, it deserves a place in the dustbin of outdated diagnostic terminology, along with dropsy, distemper and hysteria. Ellenby’s purpose however is not to wallow in abstraction and pontification about the nature or meaning of “autism” or anybody else’s experience of mental pathology or difference. Her version of autism is Zack, whose dangerous behaviors and overall impairments make even my severely affected children look mild by comparison.
Zack is a complicated kid. Not only does he exhibit the social, communication, and behavioral symptoms of autism, there seem to be more than light touches of oppositional defiant disorder, obsessive compulsive disorder, psychosis, profound learning disability/intellectual impairment, phobias of many stripes, and a wallop of sensory processing disorder. His brain wiring defies any simple labeling scheme, and “autism” hardly does him justice.
Because Ellenby does not get caught up in the artifice that is autism, she sees Zack for who he is, underneath and despite of the label. She accepts that he is permanently cognitively disabled, for sure, but she focuses on Zack as Zack, inviting fresh, out-of-the-box thinking about how to be the best parent she can be. That lesson alone is worth the price of the book.
Whitney Ellenby and her son Zack.
3. The book lucidly captures the dark interior monologues that flit through the heads of many an autism parent
Being an autism parent can be brutal, and tough times can conjure dark thoughts. Ellenby brilliantly captures raw interior moments of anguish that pop up from time to time. A few examples: “[T]his feeling of being so completely hollowed out inside that I cannot even summon tears.” “Should I take him for a walk or read a book to him? Does it even matter?” And, “I’m chained to this denigrating, unpaid forced labor with no tangible reward for all my sacrifice.” None of these moments—sometimes seized upon by neurodiversity trolls to vilify Ellenby—are meant as assertions of permanent truth or pleas for pity. Instead, they are honest snippets of painful thoughts that surface during some excruciatingly difficult moments, thoughts that shift and change over time.
An important message of Uncensored is this: if you have dark angels whispering in your ear, you are not alone. What you are going through can be crushing. Like Ellenby, you are probably doing the best you can under excruciatingly difficult circumstances. If you, like she, are “a woman who spends hours every night on her hands and knees scraping feces off walls” no one should judge you for your painful thoughts or sacrifice.
4. Ellenby seeks to dissolve the isolation endured by many individuals with autism and their families
Ellenby is keen to share her passionate advocacy for inclusion. She describes how she reinvented her life and her relationship with her son to open the world to him. “I am Teflon in defense of my son,” she writes, “emboldened to go to extremes to rescue him from a life imprisoned by fear, as real as any institutional confinement.” She describes, often in painstaking detail, how against all odds she successfully took him to a Sesame Street Live show, the film Happy Feet, a production with the Rockettes, and a water park. She finds strangers and crowds surprising supportive, even in the most difficult of situations, including on a DC Metro train where everyone handed over their wipes and Kleenex after a poop incident.
The efforts pay off. “I’m increasingly discovering that there is no genre of music, movie, art, concert, sport, dance or any social activity to which he doesn’t eagerly gravitate,” she says. “His recreational appetite is huge and he adores exposure to everything.”
Her quest for inclusion extends beyond Zack to all other families like hers. “Whether or not they admit it to themselves, their world is rapidly shrinking,” Ellenby writes. “[T]hey retreat home after a swift kick in the teeth, just another cruel consequence of having a child with autism. And with that resignation, they quietly surrender another piece of their soul.” To my taste this is a bit over-written, but I get the point. I too frequently encounter families isolated and essentially locked up at home, unable to join the larger world due to unceasing severe behaviors. As founder of the nonprofit Autism Ambassadors, she translates her emotions into action by providing recreational events and community experiences for over 600 families in Maryland and surrounding areas, a feat that is truly heroic.
5. The book shows why painful choices are sometimes necessary
Before Uncensored was published, ruthless neurodiversity trolling erupted against Ellenby, calling her a “bitch,” “racist,” “abuser,” “torturer,” and “sadist” among other epithets. Why? Because she described intentionally pushing Zack past his narrow comfort zone toward resolution of his incapacitating phobias. Just search the hashtag #ElmoMom to get a sense of what she has endured online.
I cannot begin to fathom these judgment bombs.
Many autism parents including myself, have little choice but to force their kids through discomfort if they are to have any chance at community participation. For example, last month I took a ski trip with my nonverbal autistic daughter who flew into full-blown panic at the mere sight of a chair lift. Now, I could have said, “Oh we’ll let you stay in your room playing Pink Fong apps all day, since that is your comfort zone,” but instead an instructor and I put my trembling princess on her first chair lift and swoosh, off she went, utterly terrified, with us firmly pressing ski poles against her lap. And then… the terror melted away. She glided off the lift and skied happily down the slope, repeated the task 12 times, no problem, and the next day eagerly hopped onto a longer and faster lift. We’ve been through this pattern more times than I can count—immersing in a pool, swimming in the ocean, boarding an airplane, you name it. First panic, then pushing, then calm (and, blessedly, usually joy).
Had I not listened to my gut, as did Ellenby with Zack, my daughter would have remained locked in her phobias, and in her room with her apps. Go ahead and accuse me of child abuse, as trolls did to Ellenby. Make my day. Faced with extraordinarily challenging and mysterious circumstances we autism parents have no choice but take calculated risks all the time—should we try this medication or that one with the awful side effects? Should we try this therapy or that one that one that might drain my bank account? Dare I take my screeching daughter to the market? Should I call 911 when my son attacks me? Should I take my son to an Elmo show or stay at home, again? There is no roadmap for autism, particularly for autism as overwhelmingly severe as Zack’s. We are forced to make many difficult and often harrowing decisions as we go along. Just as there is no one autism, there is no one way to be a parent of someone with autism.
6. The book contains a brilliant presentation to promote awareness and acceptance
Toward the end of the book, Ellenby has become a one-woman autism awareness and acceptance machine. I found her presentation to Zack’s mainstream peers at school an instant classic. I won’t repeat it here (hint, it’s at pages 266-269), but can only say I wish every schoolchild in America could hear it. It would make our autism world a much better place.
While Autism Uncensored provides a welcome contribution to the overall discourse about autism, the book also has its faults. Notably, Ellenby mischaracterizes the role of Leo Kanner in the development and popularization of the “Refrigerator Mother” hypothesis. The book is a personal memoir rather than a footnoted academic tome, and therefore I can’t know of the sources for her portrayal, but I would like to make some effort to correct the record by pointing readers to this recent commentary by James Harris, MD, Leo Kanner and autism: a 75-year perspective. In short, Bruno Bettelheim popularized the horrid idea of cold parenting causing autism, not Kanner. If the book is re-printed I hope the author will make appropriate corrections.
Another minor gripe concerns the photos at the end. After all the uncensored prose describing Zack’s first 6 years, we get cherry-picked images of a handsome and well-kept brown-haired boy. Absent are any photos of the punched out walls, the ripped up books, the destroyed bedroom, the spinning, biting, or screaming. While it’s lovely to see him, the selections ironically skew sugar-coated and idealized. Also, at the end of the book, as her life with Zack turns more harmonious, her prose sometimes veers a bit Hallmark card. For example: “No matter where your child resides on the spectrum, no matter how severe the behaviors, your child has the same potential as any other to make serious functional progress.” As much as I love to see limitless potential in each person affected by autism, I know this sweeping optimism to be overstated.
Finally, while Ellenby is a powerful writer and passionate advocate for her son and community, a memoir about a severely autistic boy that ends at age 7 is only the beginning of a long journey. Ellenby’s most important chapters have yet to be written, but when she does I will look forward to the sequel, warts and all.
Jill Escher is president of Autism Society San Francisco Bay Area, an autism research philanthropist, and a housing provider for adults with autism and developmental disabilities. She is also the mother of two children with nonverbal forms of autism.