Thank you for taking the time to read this blog and if you are intrigued, my book. An adapted excerpt from Autism Uncensored was recently featured in The Washington Post which created very strong reactions on all sides. I would like to speak to them, most especially those adults with Autism who have expressed to me their outrage and genuine hurt.
My first response is the uncensored truth ~ that my significantly impacted autistic son, Zack, is the best thing that has ever happened to me. He has shifted my perspective on life, redirected my career, and ignited a passion within me to advocate for persons with disabilities in ways that even my former career in the US DOJ Disability Rights Section was unable to do. The reason for this is simple – some experiences must be lived to be truly understood. My unique experiences with Zack, both searing and exhilarating, caused an evolution in my thinking from feeling overwhelmed and inadequate to meet his needs, to becoming a champion for inclusion of autistic persons everywhere, regardless of where they reside on the spectrum.
The profound isolation that Zack and I both felt many years ago inspired me to create “Autism Ambassadors” a charity that serves over 700 families impacted by Autism, by allowing them to engage with each other and recreate on their own terms. Every month I rent out a cool space (i.e., indoor splashpark and pool, gym, dance studio, movie theater) for our exclusive use for two hours to bask in the glow of being entirely ourselves. Siblings of autistic persons understand that they are not alone, parents are able to relax their shoulders, and our beloved ambassadors are free to flap, bounce, gallop and yelp in a judgment-free zone where we all “get it.” Nothing I have ever done in my career has brought me more intense satisfaction or joy.
To those autistic adults whom I have hurt or offended with my candor, I have only one ask ~ please read the entire book before drawing conclusions about my messages. Select lines posted via twitter is not a fair representation of all that I learned and recount within the pages. I understand that many are reacting to the Post excerpt, but even that story was redacted and not the complete chapter from which it was taken.
As to the hurt feelings I unintentionally provoked, please understand that the was the very last thing I ever wanted to do, and not at all what I anticipated. As I state in the prologue of the book, my goal was to tell the uncensored truth about my own experience with Zack in the interest of helping others in pain. I am not speaking for other parents, nor for other persons with Autism, nor for Zack himself. Nor could I. My goal, first and foremost, was to speak to other parents, caregivers and siblings of persons with Autism who might be struggling to cope with the very real challenges Autism presents, and provide them a perspective of realistic hope, attainable goals and genuine joy for themselves and their children, even if their children remain significantly impacted by Autism like Zack. I also wanted to encourage them to cast off whatever distress they might be feeling and involve their children in their communities regardless of any disruptive behaviors. I am talking about the civil rights of our disabled children to access public venues, partake in recreation, be employed and seize everything they deserve in life irrespective of their functioning level.
To those autistic adults who accuse me of abusing my son, nothing could be further from the truth. I never laid a hostile hand on my son, nor said a cruel or disparaging remark to him. I did use a protective hold to keep him from self-injury when he had a physical outburst, and over time I lovingly pushed him to overcome his phobias of unknown indoor spaces because his life was rapidly constricting. I pushed him because I respect him, because I wanted more for him than others believed he was capable of, because I knew him so intimately I could hold him firmly in my loving embrace while I whispered to his fears until he calmed. Today Zack is a self-confident child who navigates the world with competence, who attends rock concerts, swims like a shark in Special Olympics, dances wildly in clubs ~ all of which he might never have been able to do if he and I had surrendered to his intense fears. Far from stifling his autistic behaviors, they are on proud display complete with vigorous bouncing on his heels, flapping, yelping, galloping – and I could not be more proud of his nonconformity. My boy is smashing, a passionate live wire, on fire in the best way! And I cannot regret what I did to get him here and give him a life. And he has expressed his gratitude to me in turn.
I understand that my unguarded description of the emotional pain I felt along the journey is searing for many adults with Autism to read, and in this respect I’m afraid I honestly cannot help. You adults with Autism who are reaching out to me in brilliantly worded protest, you who are capable of self-advocating, organizing, who have children of your own – you in no way resemble Zack. Just as I do not know what it is to be you, you cannot know what it is to be Zack. Or me. You personify independence, and as such represent what so many of us parents of autistic children dreamed would be our own children’s outcome. But that was not the outcome for Zack or millions like him. I know that the words I use to express my anguish can be excruciating and frustrating for you to hear, but an honest account of my own experience demands that I reveal them. I would never want to hurt you or anyone. But I cannot spare you the pain of hearing my words while also speaking to others who might desperately need them in forging the way to their own reconciliation with the challenges they face.
Mine is only one mother’s story, told unguardedly and in real-time, so that you may know as intimately as possible what it was to be me. Whether or not the feeling is reciprocal, to all those with Autism and other disabilities, I am on your side, I am listening to your voice. I only hope you will read my entire story, and hear mine.
With love, Whitney