Note: Billy Man removed this post last night while I was reading it on Facebook livestream. Here is the text and some screens. I wish I had comments caught already before he removed his post.
The comments from the Autistic Activists and Allies were incredible and the real reason for the post removal. Autistics were speaking and Autism Speaks silenced us … again.
Thanks Billy Mann for the unapologetic, abliest twuntfest. You suck.
To the Autism Community
I owe the autism self-advocacy community an apology. I do and it’s real and heartfelt and I am compelled to begin this editorial with that, quite simply, first. My apology, while heartfelt and truthful, is also complex and layered as it is born from a unique perspective that autism self-advocates will not fully understand, and even, most parents of a child with autism may not necessarily understand or agree with.
Around 2009, while President of EMI Music, I was asked to speak at 10 Downing Street in London before then-Prime Minister Gordon Brown’s wife and many distinguished members of the PM’s cabinet, as well as several of the United Kingdom’s foremost thought leaders in the autism community.
Notables attending the event varied from renowned Oxford autism researcher Simon Baron Cohen to friend and soon-to-be Best Director Oscar winner, Alfonso Cuaron. Also, there were countless political figures as well as several of my music industry colleagues who, up until the event, knew very little of my personal connection to autism. As a national board member of Autism Speaks, then a relatively young but fast-growing not-for-profit charity which has truly moved the needle for the majority of the autism community, it was one of the organization’s co-founders, Bob and Suzanne Wright, who asked me to speak. Schedules aligned so that not only would I be in London at the time of this event, but my wife, Gena, would also be there.
On a high-speed train from Paris to London I was going over my remarks. It was boring, filled with all of the issues, rising statistics and daunting costs autism families faced. It was very (not to offend my British friends)…”English.” It read more like a librarian’s welcome from an episode of Downton Abbey than words to move leaders to action and, moreover, illustrate the depth and complexity of being a father of a severely autistic child.
The stark truth for my wife and me was that our oldest son Jasper’s autism was overwhelming us and becoming increasingly more challenging for everyone, most importantly, it was increasingly challenging for Jasper himself. Today there are some new television programs that have begun to articulate the various hues and degrees of autism (eg, Atypical, The Good Doctor, etc), but our little guy’s autism was not overflowing with card-counting savant characteristics that we could reach, or the gentle rocking back and forth autonomous behavior from which the term “autism” was in part born somewhere in Austria.
My son’s autism was—and is—sometimes very dark and involves screaming, energy bursts, SIBS (self-injurious behaviors, like hitting oneself), sleeplessness, repetitive patterns of all kinds, echolalia (repeating sounds and words over and over), apraxia, and the list goes on.
Our son was born into the world on a warm summer day and he crawled and babbled and giggled and walked and developed typically until…he didn’t. From the moment he was born, we loved and love him completely and wholly, but these challenges are not easy for him or the many who love him.
To an “autism self-advocate”—that is, one who has an autism spectrum disorder diagnosis and also has the depth, talent, articulation, analytical and emotional gifts to deploy in order to stand up for the rights of individuals with autism, some of what I will write here may not be easily digested. But I’m going to try to express myself as honestly as I can and, as this takes shape, hopefully the “reveal” may provide all of us with some latitude and room for shared perspectives.
I remember one of our first scary incidents was when we lived in an apartment building in Manhattan. Jasper was only a crawling baby and we discovered that, like many kids on the autism spectrum, he was a flight risk. One day, he simply vanished from our apartment. Our babysitter had apparently turned around for a moment and he was gone. Thankfully, one of the men who worked in our building found Jasper in the emergency stairwell half a dozen floors down from the back exit in our kitchen. Autism and some of the unique safety risks were starting to reveal themselves to us. My wife and I went from being an untouchably happy newlywed couple having our first baby in our first home to confronting a vague, confusing ASD diagnosis that no one seemed able to define for us.
Thank God for Autism Speaks, which today provides a host of free tools for families including a First 100 Day Kit for parents facing a diagnosis. (I wish we had had one of those!) Plus, there are support lines for people who really need it, walks and events that shine light on research, employment, community, and more…But at the time, we were hydroplaning emotionally and when the developmental psychologist told us that Jasper may be severely impacted by autism and may never live independently, I watched Gena stumble down the hallway to our bedroom, curl up in a ball and sob. We were both helpless. And my angel of a son, sat beatifically unaware, rosy cheeks and pink lips, big brown eyes staring into space. His only word was “Guh.”
But back to the speech in London.
So, on the train from Paris to London, I read my boring “Downton Abbey” speech to myself and looked at Gena and said, “I can’t read this. It says nothing. I’m just spewing facts and stats that these people already know. It won’t move anyone to see the urgency. It doesn’t capture any of what we experienced when Jasper was diagnosed or the actual grief you can feel for the loss of what you thought your child’s health was going to be.”
We were on our own and suffering and unlike most families, we were advantaged and living in the most sophisticated city in America. If you ask any parent who has been in our shoes (including the parents of self-advocates) I believe they will tell you an autism diagnosis can tear families apart.
The divorce rate is significantly higher. The bankruptcy rate is significantly higher. States are cutting aid and the number of children being diagnosed has exploded (with only a fraction reflected by greater identification of the disorder). More than that, autism doesn’t stop at 18.
In fact, the majority of services and scaffolding that our public schools do try and provide stop at what is referred to as “the cliff” after high school. Unemployment for individuals with autism is over 70% and the #1 most haunting thought every parent of a child with severe autism thinks every day is: who will care for and protect my child when we are gone?
Pure and simple. So how do I convey this in a speech? How do I express the emotion and the urgency of my experience as a father? And, on top of all this, I am a songwriter, not an amateur songwriter either. I write songs for the biggest artists in the world. What kind of music-less song will this be? So I wrote “I Am Autism.”
“I Am Autism” is dark but it was intended to leave the listener hopeful. Without realizing or certainly intending it, “I Am Autism” would become a jagged knife to the heart of many in the autism community.
I created this poem purely from my personal perspective as a father with a son with severe autism. To us, autism was a thief in the night who stole our once babbling happy son from us. To us, autism dismantled, tested, crumbled friendships and family relationships.
Autism applied economic pressures on us even as my career was blossoming.
Autism at the time did not feel like a gift to us; it was a cacophony of screaming, perseverating, and alienation imposed on us.
Autism sucked. And we wanted a cure. We prayed for a cure.
We didn’t sleep because our son didn’t sleep. And every waking hour was and is spent worrying about his safety after our lives end. So on that high speed train, I wrote…”I Am Autism.”
At 10 Downing Street, “I Am Autism” had the impact I had hoped for—or so I thought. I held the microphone and read the poem. And everyone cried. Everyone. (British people are not typically ones to cry publicly, in my experience.) And my emotions were stirred as I read because it was so dark and at the time, very much my truth.
But it should be noted that the second half of this poem was quite optimistic: that the specialists and advocates and therapies and families would push back on the dark force of autism and meet the challenges for our kids. I felt the kind of energy release that one gets from a confessional.
“The world needs to hear this, Billy!” she passionately told me. In retrospect I remember Simon Baron-Cohen gently suggesting we pause and reflect on it. “Might the high functioning autistics take offense to this notion?” he asked softly. But the momentum was Suzanne’s and if you knew Suzanne Wright, when she put her engine into gear, you best get out the way!
By dinner’s end, she had recruited Alfonso and me to collaborate. Autism Speaks would help produce a little video and we would use footage of families wearing white t-shirts and jeans. It was done. We would share “I Am Autism” and it would move people to action.
An Oscar and Grammy nominated duo would create it…and…with Suzanne’s intensity and focus behind it, it somehow happened. But the response was not what Suzanne or any of us had envisioned.
From some parents there was praise and from some there was outrage.
“I Am Autism” went from galvanizing the autism community to act and conquer this disorder to a dagger in the heart of a healthy segment of the community. And being perfectly honest, at the time I didn’t get it. I just didn’t.
For us, autism was so jarring, so overwhelming. Our sleepless friends with autistic children who wiped their feces on their bedroom walls night after night said thank you to me. Our friends whose children were a flight risk said thank you to me.
Random parents and educators wrote to me, thanking me with tears in their eyes, for “getting it,” for “saying the truth” of their pain and struggle. But there were others who were not so pleased and Autism Speaks was under a fierce attack. Alfonso and I were under attack, too. Even a couple of AS board members protested how awful this was.
And the most violent push-back came from the self-advocates. Most notably, Ari Ne’eman whom President Obama had appointed to help represent the autism community in the White House.
Back then, being entirely honest, I was livid: if an individual has the ability to live independently, show up to work, emote, express, analyze, evangelize, give public speeches, attend college and then engage in public policy, what could he know about my son’s autism?
That’s not autism, I thought; that’s “autism lite.” My son can barely speak. My son took 7 years to learn how to swim back and forth in a pool. My son is 16 and needs a storyboard to follow every time he has to wash himself. How on earth can a fully functioning autistic person speak for us? Moreover, how can they claim to speak for him?
Meanwhile, the self-advocates fought back asking the same, “How can Autism Speaks speak for us? We are a distinct minority among the 70 million individuals on the spectrum, but are we contaminated human beings possessed by evil?” they asked. Adults who have social quirks and challenges, who make noises and have complex associated disorders that we have to self-regulate and manage day after day while trying to feel normal and accepted– How can you speak for us?
And I didn’t get it…until our younger son, Felix, was diagnosed with autism, too. Except Felix can talk and laugh and play and learn guitar and taught himself Spanish (literally) and at a specious glance appears neurotypical. As a faith-based person, I realized that God clearly had more for me to learn.
Autism is a snowflake disorder and no two kids are exactly the same, even if they may share similar characteristics. Should Autism Speaks—a truly inclusive umbrella organization—choose, for lack of a better description—a side? Is one kind of autism really “better” or “worse” than another? And really worse, in today’s environment where cyberbullying has been weaponized by 12 year olds and political leaders, should the community’s largest charity ignore one segment of this growing population more than another? Felix’s future adult independence has yet to be clear but we are optimistic, even as we know Jasper will never be independent. Is this “survival of the autism-est?”
And I realized that after years of caring, not caring, rationalizing and spinning, “I Am Autism” was not my best most balanced moment. It was honest. But should it have been highlighted as anything more than just that: a dad in pain expressing his unique autism experience?
Today, I know I was wrong and I do hurt knowing that should my other son Felix read that poem given his struggle with communication subtleties, might he think I love him less? Typing these words alone fill me with shame and in an instant, I am enlightened, humbled and grateful to the self-advocacy community for never letting up.
While I grieved the loss of my traditional expectations of fatherhood, they stood up without me for the value and dignity of my two sons and I had to catch up. And I have. Perhaps only the father of two children—each uniquely autistic—could be swayed to understand how far the diagnostic pendulum can swing? And like most challenges each of us face, this paradox was tailor-made for me.
I am proud to say that Autism Speaks has been largely transformed. Like any big organization or start-up, it is a constant work in progress that ideally fails quickly with a misstep and wins slowly and strongly when things go well. The charity lost the indefatigable co-founder Suzanne Wright suddenly to pancreatic cancer and has wisely taken the period of grief as an opportunity for self-reflection.
The media savvy, powerbroker leadership had to change from Suzanne and her husband of 50 years, Bob Wright (the legendary GE/NBC Universal mogul and Chairman) to a more soft-spoken leadership, real estate mogul and autism dad, Brian Kelly, whose mantra and focus is purely about serving every facet of the autism community, from those who see autism as a blessing to those who see it as a tragedy.
Autism Speaks has illuminated this neurological disorder more brightly than anyone could have imagined and the organization deserves positive credit. That blue puzzle piece which I wear often and proudly—so much so that I have a puzzle piece tattoo on my left wrist–solidified the color and symbol for families.
Autism Awareness Month. World Autism Awareness Day, April 2nd, sanctioned by the United Nations. I remember Suzanne Wright coming up with the idea to light the world up blue and in only a couple of years, today, thousands of the world’s most iconic landmarks and building are lit up blue around the globe to promote acceptance, understanding and awareness.
AS has raised, lobbied for and helped deploy over a billion dollars in funding for research and education and done so working in a bi-partisan fashion at home and inclusive fashion overseas.
But autism remains complex and is too often thought of as a children’s disorder when in fact our children with autism become teenagers with autism, adults with autism, elderly people with autism.
Do we need a cure? Well…that debate is not for this piece. If you ask the families who are severely impacted, who face the financial, associated health challenges (ie seizures, GI challenges, immune deficiencies, etc) and practical hardships, I think that, yes, they would welcome a cure.
15% of ASD people have epilepsy compared to 1% of typical people.
49% of ASD people are at risk for wandering, which can often turn tragic
(Kudos to AS for pushing for Avonte’s Law!)
If you ask the self-advocacy community, they don’t want to be cured and find the notion offensive. They want to be included, accepted and embraced as a critical voice in every dialogue that is associated with the disorder and fully embraced everywhere.
To my two neuro-typical daughters who were given, in addition to the clunky road every kid travels when growing up, the were given no choice but to take the oftentimes isolating journey with autism each day, already our 11 year-old daughter gently asks, “Will my kids have autism, too?” She is not asking to be cowardly, she is asking because she is brave.
How would most autism parents wish to answer this question and would longing for the next generation to be able to opt-out of autism be wrong? I don’t know how to answer that question, I only know I cannot disqualify it.
I love my children—all of them equally. They are all incredible and my wife and I have been blessed with an extraordinary life and marriage and more resources than most to absorb many of the daunting costs (emotional and financial) associated with our boys’ unique challenges.
As Autism Speaks enters its second decade of existence, perhaps the snowflake paradox of being the parent of two fierce young daughters who already advocate for their brothers–my two magnificent (and vastly different) autistic sons–has led me to understanding that there is not one autism at all, there are many autisms deserving of our resources and compassion, and individuals on the spectrum who deserve our respect and parity. Perhaps Autism Speaks will be even better… as Autisms Speak.
I only know that today I sit on a more diverse Autism Speaks board that includes parents and individuals of all backgrounds, including those on the spectrum, and the charity’s standing and rating is higher and outreach is stronger than ever. But just as we are all works-in-progress, so should every non-profit charity organization. We can always do better and grow.
I can never un-say the words of my poem those years ago, but like both of my sons, I can learn to use my words better. Starting sincerely with two for anyone in the self-advocate community who felt hurt by them: