Whitney Ellenby is a former US Department of Justice, Disability Rights attorney whose writings have been published in The Washington Post, a law review periodical, and the U.S. DOJ website. She is the author of “Divinity vs. Discrimination: Curtailing the Divine Reach of Church Authority,” Golden Gate University Law Review (1996)), as well as an amicus brief on behalf of the U.S. DOJ Disability Rights Division regarding discrimination against mobility-impaired individuals in violation of the Americans with Disabilities Act (ADA). She is the proud parent of a son with Autism and founder of “Autism Ambassadors,” a charitable venture through which she runs exclusive recreational events for over 600 families impacted by Autism in the Washington, DC/Maryland area, including a Sensory-Friendly showing of the world-famous “Gazillion Bubbles Show.” She is an expert on Autism and has testified before the Maryland Senate on disability-related issues, is a member of the Developmental Disabilities Advisory Council for Montgomery County, MD and serves on the University of Maryland Autism Spectrum Disorder Advisory Board. Whitney’s expertise is steeped in her extensive disability law background, personal experience with her own son, and over 10 years of serving children, teens and adults with Autism of all ages through her “Autism Ambassador” events. Her monthly “Ambassador events” have been featured in local t.v. news, The Washington Post, Bethesda Magazine, and The Bethesda Gazette. Whitney was most recently honored with an “Autism Awareness Proclamation” and “Community Leader” award for her advocacy and dedication to the disability community of Maryland. She has what she describes as a “healthy obsession” with all things Autism.
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1. What inspired you to write your book?
I frankly felt both inspired and fed up. Fed up that the depiction of autism in Hollywood movies and TV shows was overwhelmingly of the extremely gifted, high-functioning person “dusted” with autism but not wholly consumed in ways that are anything but entertaining. I felt that the demographic of parents, siblings and caretakers struggling to cope with autism were being misled by false hope of recovery from autism, in part because the media kept featuring accounts of someone with autism who “broke through” or was seemingly cured. I knew from personal experience and over ten years of engaging with persons with autism of all ages and abilities that the “miraculous breakthrough story” was the exception to the rule. Zack, my own son, who is significantly impacted by autism, received the best early intervention therapy that money could buy. But it was not until years later that I came to understand that the best that money can buy is not the same as providing the best intervention. Zack only made significant real-world functional progress when I took on his autism with an unconventional—and admittedly controversial—experiment of forcible exposure to social venues he feared.
Many years ago, when the first exposure method worked and Zack overcame his intense phobia of an indoor venue, I was immediately ignited. My passion was lit both to create recreational opportunities for persons with autism to thrive, and also to describe the overwhelming joy and satisfaction I felt in helping Zack overcome his fears. I knew my unguarded story would receive some backlash, but it was worth the risk. The thrust of the book was for me to speak very candidly to fellow parents in pain who might be feeling demoralized, frustrated or embarrassed by their children’s lack of progress and unusual behaviors, and liberate them with radical new ways of approaching autism.
The book is also aimed at the general public who cannot imagine how genuinely excruciating the experience of an autistic public meltdown can be, as well as the myriad daily behaviors with which we parents and caretakers cope. The book is told through my voice and, although it is primarily about me and Zack, in a very real sense the public is another main character in the book. As I wrote I became increasingly aware that my journey would not have succeeded without them.
2. How have you used your book?
My book releases on April 15, 2018 but has already created a lot of buzz prior to its release—both supporters and fierce opponents. For me the book is a personal manifesto. My truth, my voice, my story, and my hand outstretched to others in pain to tell them that, while autism can indeed shatter your life, it can also get a whole lot better. The book is both confessional and cathartic. Confessional in the sense that for many years after Zack’s diagnosis I struggled with the feeling that I was being punished for some sort of existential sin in my past, deservedly so. Once I finally shed those toxic beliefs, my story became about the release of the myths, false hope and unrealistic expectations of recovery by which I had been held captive for so many years. The turning point for me was ironically the precise realization that my son would never, ever be normal, never, ever recover from autism; it was unexpectedly liberating and gave rise to an entire shift in my thinking. The philosophies I eventually grew to own—about shedding shame, openly disclosing Zack’s autism everywhere we went, letting go of the façade that everything was all right in life and home, admitting the ways autism had hijacked my marriage—all of these were gradual pivots that ended up being life-changing for me, and I wanted to share them with others. Without these discoveries I would still be grieving.
So, in a sense, my book is my gift to others in pain. While my candor can be painful to read, it’s authentic. And what’s extraordinary about my story is that it’s not extraordinary at all—it’s what’s playing out in the minds, marriages, lives and hopes of parents universally struggling to cope with autism. My candor is my support, so others know that they are not alone. I stand with them. I have traveled to the places where they lie wounded, and I’m here to encourage them to stand upright and discover there is indeed a shining light at the end of the tunnel.
3. Would you advise other leaders to write a book? Why?
Yes—but only on the condition that they commit to truth, no matter how painful it is to reveal or for others to hear. Because truth is indeed the most valuable currency. Without it we starve. And a leader is not a leader who is not transparent about what it took to allow her/him to rise. As I say in the book, people cannot grab hold of the ropes needed to pull themselves out of the quicksand if the ropes are coated in sugar. Credibility about hope for the future is predicated in truth about the past. So if a thought leader, or any other person who believes they have something useful to say, really wants to state something of value that others can hold onto, in my opinion it must reflect the entire truth—good, bad and ugly. This is true across all topics in life worthy of being written about.
Oh, and be prepared. One of the consequence of being truthful is that others may be very, very uncomfortable. And that’s fine. That’s how you know you’re doing it right.
In terms of why to write, now that I’m on the other side I realize that writing is a way of exposing and discharging the inner demons we all wrestle with, particularly in confronting adversity. A leader is someone who is not afraid to go first. Someone who sets a healthy and sustainable example for others to follow, who imparts important truths, and rejects falsehoods. So in writing I believe that leaders are themselves strengthened by the very act of committing their philosophies to paper. There’s something transformative about putting your beliefs in writing for all to see. That’s one very crucial way of determining just how strongly your beliefs are held: Are you willing to write them down, share them for all to see and judge?
4. Has your book created new business or professional opportunities, such as speaking engagements or new contacts?
Yes, so far I have several speaking engagements lined up locally, and hopefully many more to come. The book has also created a platform upon which I can not only tell my story but delve into public policy, such as the need for “Sensory-Friendly” opportunities (adapted for persons with autism) to become the law of the land; the need for the general public to assume some of the burden of ensuring that a person with autism can meaningfully access public venues open to all. The book marks the beginning of my journey of telling the uncensored truth in furtherance of policies that help people with autism, and those who care for them, to have better lives in every capacity.
So far I have given many radio and print interviews broadcast from all across the country, which are indescribably cool because of the various radio personalities involved, the insightful questions no one else thought to ask, the particular audiences who are listening. I have heard from strangers, other parents with whom my story has resonated, expressing profound relief that someone finally said out loud all those thoughts that have tormented them silently—these are my best contacts. But I have also heard from other people, many adults with high-functioning autism, some other parents of autistic children, who deeply resent my raw candor, my methods, my messages. The protest against my voice has itself been very instructive because I am hearing from people I never expected. I’ve angered people I never expected—all good in a feisty democracy. An honest book can ignite this very type of confrontation.
5. Has your book inspired or motivated others?
Yes, in many directions. On one hand, some parents have written to applaud me for my candor and giving voice to their own, telling me they have a newfound sense of hope for their autistic children born of realistic expectations. This was my primary goal, and if I reach this demographic of parents and caretakers in large numbers, I have succeeded regardless of any backlash. Even in its infancy the book has inspired many parents to unburden themselves of the weight of pretending it’s easy or manageable to cope with autism; they now feel freer to acknowledge the enormous daily challenges they face, understanding I have their back because I spoke up first, candidly and loudly. And will continue to.
On the other side are those who feel deeply offended by unguarded disclosures and have communicated it to me in many forms. While I disagree with them on substance, I can’t help but notice that, in an unexpected way, my book has also galvanized self-advocates with autism to speak up loudly. Whether or not I agree with them on substance of their criticism, I find it inspiring to see how they have mobilized, and I respect their voices.
Many owners of recreational facilities now reach out, asking me to consult and guide them on how to make their performances or services more accessible for persons with autism, so of course I love that!
Clinicians and therapists who work in the field of autism were another demographic I was targeting, and I’m thrilled at the extent to which they are listening with open minds to a parent’s perspective. These professionals deal not just with children on the spectrum but, by extension, their parents, and I’ve been humbled and deeply gratified to learn that many feel better equipped and informed about how to speak with their clients/parents after reading my story. They feel they now have a deeper glimpse into the pain and vulnerability from which parents are operating and approaching them. Some professionals have asked my opinions on various therapies and interventions and I always return to my truth—that for literal thinkers with autism, there is no epistemic substitute for real-world exposure. That’s a message I imagine I’ll be repeating over and over in the following months. With pleasure. Thanks for the megaphone, John Koehler!
6. Why did you choose Koehler Books from among your many publishing suitors?
Oh, so many reasons! From the beginning I wanted an independent, discriminating publisher. I’m not one for giant monolithic companies. The key to me was to find a publisher with an independent spirit, with the courage to take a chance on a first-time author with a controversial message. When I began searching I found a handful of potentials, but one stood out because it went above and beyond my expectations—the head of the company himself had a direct personal connection to disabilities. John Koehler was deeply connected to people with disabilities because he had worked with them through his own ministries, which moved me enormously and made me feel an immediate kinship. One other point that caught my attention was that the bios of every person working at Koehler included truly personal details—the type that lend themselves to a sense of community, which I very much needed for the type of story I was telling. I needed the hand-holding at times, and the moral support that only a certain type of publisher could provide. It’s why in the “With Gratitude” section of my book I credit John Koehler and editor Joe Cocarro as being my “unicorns in the publishing world” that I’d hoped for but didn’t really believe existed.
Oh, and John Koehler’s whole boomerang champion gig—once you encounter a boomerang champ, you stop looking elsewhere. You have arrived.
“And when in the grips of a public tantrum, amidst the horror and humiliation of him shrieking and splayed out on the floor while strangers recoiled in shock, my mind lurched towards an inescapable truth—that I want out from this nightmare. I want out from this child.”
So begins the turbulent ride of one parent’s decision, crafted in despair and desperation, to abandon traditional interventions for her autistic son in favor of a “hands on” approach of repeatedly exposing her son to real-world settings. Autism Uncensored is an unrestricted portal into the mind of someone who had no intention of sacrificing her career or life for Autism, unaware of the many ways it would irreversibly redefine both. As she clarifies at the outset, “this is not the story of a miraculous breakthrough or recovery.” Zack is still very much autistic and always will be. It is instead the true, real-time account of her decision to allow Zack to indulge in the very behaviors that formal therapies sought to extinguish, to disclose Zack’s diagnosis in public settings, and to repeatedly expose him to real-world situations and override his tantrums regardless of public ridicule or scorn.
Autism Uncensored goes where no other book dares—revealing the private disgrace and self-blame about having a “defective” child; the near disintegration of marriage; the failure of the traditional behavioral interventions; and the mercenary way in which service providers prey on parents’ desperation for a cure. It is a personal manifesto about how a socially integrated life is attainable regardless of whether a child overcomes the major limitations of Autism, sparking a new conversation which goes beyond simply accepting persons with Autism for who they are, but considers pushing them beyond their comfort zones to learn who they are capable of becoming. An unstoppable ride with jolting twists and turns, Autism Uncensored will leave you exhilarated, informed and still gasping for air.