Billy Mann is a board member of Autism Speaks. He also wrote that horrid commercial that we all love to hate. He wrote a fake apology. This means its a gas lighting , pity party rant. Allow me to dissect each part of it so you can see how truly horrible it is. As usual, exact verbage is in italics and my thoughts are in normal print. Links to the screenshots are at the end.
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 an autistic child with autism may not necessarily understand or agree with.
There is a lot to unpack here. We are not the “autism self-advocacy community,” we are the autistic community! He says he owes us an apology but I do not see one. He says we cannot understand from the perspective from a parent of an autistic child. I assure you, since I have three, I understand that all too well. Parenting is hard. Period. We understand more than you give us credit for. Let’s see if we find an apology. Its going to be quite a ride.
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 man 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 truely moved the needle for the majority of the autism community. It was one of the organizations co-founders, Bob and Suzanne Write, who asked me to speak. Schedules aligned so that not only would I be in London at the time of this even but my wife, Gena, would also be there.
He is just listing his credentials that have nothing to do with this monstrosity that he is writing. he says he was president of this music company. I have a Bachelors of Applied Science in Veterinary technology but it has nothing to do with this. Does he want a participation trophy? He says he met all these famous people. I met Dr. Oz. So what? ::insert eye roll here:: Autism Speaks was not a small organization. It started with a 25 million dollar donation from Home Depot. I hardly call that small. Not only that. They absorbed five different awareness organizations so they have the power of misinformation.
On a high-speed train from Paris to London I was going over my remarks. It was boring, filled with all 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 Jasper himself. Today there are some new television programs that have begun to articulate the various hues and degrees of autism (Atypical, The Good Doctor, ect.) 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 and many who love him.
Still no apology. There is a lot to unpack here. He goes on to say how autistics are a financial liability. He complains about what he wrote was boring. He then goes into functioning labels. He says how his son is “severe” and lists the different behaviors. He says how his son’s autism is “overwhelming him.” How about Jasper? He has to live with parents who will not accept and accommodate him. He goes and lists the different characteristics his son does not demonstrate. How is that relevant? Then, he goes on to complain that his son thrives on routine, repeats certain words or phrases (the start of speech, oh no!), stimming (which helps him self regulate), hurting himself (could be out of frustration from not being accepted for who he is), lack of sleep (a doctor can prescribe medication for that) and poor fine/gross motor skills (occupational therapy can help with that) . He is just complaining about his son while saying he loves him unconditionally. This does not sound like unconditional love. He just assumes its hard because he speaks for him instead of listening to him and giving him a voice.
To an “autism self advocate” – that is, one who has an autism spectrum disorder diagnosis and also has the depth, the talent, articulation, analyutical and emotional gifts to deploy in order to stand up for the rigths 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.
Still no apology. He is just using filler words. My language delayed five year old knows that he uses very poor grammar. His use of grammar makes my head hurt and I have some language difficulty. He assumes all advocates are savants. I am far from it. I am educated but definitely not a savant. Higher learning was very difficult. I am using me as an example of the flaw in his logic. This is a paragraph that he could have done without.
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 bulding found Jasper in the emergency stairwell half a dozen flights 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 untouhably 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 G-d for Autism Speaks, which today proves a host of free tools for families including a First 100 day kit (I will be dissecting that at a later date) for parents facing a diagnosis. (I wish we 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 that time, we were hydroplaning emotionally and when the developmental psychologist told us that Jasper might 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.”
That incident was scary. EVERY parent has a child that runs off. Its part of being a baby and a toddler. It is not unique to autistic children. Its part of being a parent. Having an autistic child does not ruin marriages. He mentioned that he used to be happy in his marriage but does not mention that having an autistic child ruined his marriage. It does not make any sense. Autism Speaks is a hate group that wants to rid us from this earth but THANK G-D for AUTISM SPEAKS! Part of the 100 day kit is telling parents to grieve the child they thought they had even though the child is still alive. Its sickening. When I get my hands on this kit, I will tear that apart as well. They focus how the parents lives are over because their child will never be independent. Being independent is not the only way to live a full and happy life.
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 am just spewing facts and stats that these people already know. It won’t move anyone to see the urgency. It does not 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.”
He goes on about his speech and how tragic it is that his son is autistic. Its how it affects the parents. Nothing about his son. I hear the sea gulls from Finding Nemo.
We were on our own and suffering and unlike most families we were advantaged and living in the mist sophisticated city in America. If you ask any parent who has been in our shoes (including parents of self-advocates) I believe they will tell you an autism diagnosis can tear families apart. The divorce rate is slightly higher. The bankruptcy rate is significantly higher. States are cutting aid and the number of children being diagnosed is 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 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 song writer, not an amateur song writer 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.”
Still no apology. Billy still goes on and complains how hard he has it because he has to care for his son. I hope his son doesn’t hear him talk like this! He goes on to say he lives in a nice house and has enough money for everything. He gives statistics without actually giving them. Donald Trump’s statistics are more specific than his. He keeps up his tragedy narrative that we are trying to fight. He tells the story on how he came up with this horrid poem like we care. Autistic adults have children and know what parenting autistic children is like! Do not infantize us!
“I Am Autism” is a dark but was intended to leave the listener hopeful. Without realizing or certianly 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 that 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, persevering, and alienation imposed on us. Autism sucked. And we wanted a cure. We prayed for a cure. We did’t sleep because our son did not sleep. And every waking our was spent worrying about his safety after our lives end. So on that high speed train, I wrote “I am autism.”
No apology still. Again, nobody cares why or how you wrote it. It could have been in a tree and still we would not care. It does not matter how it was intended. It was and still is very harmful. He did not think how others would receive it. He did not give autistic people enough credit. When you say you hate autism, you hate your child. Pure and simple. Autism is a part of your child, whether you like it or not.
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 the 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.
He got the reaction he wanted from the tragedy narrative. Everyone cried and was sad for their children. Not what they need. They need to be empowered to live the best way they can. Like any child. This poem was dark. It shows how much we should hate ourselves and our children. The second half shows that the parents should fight their children. That is not how to parent. You support your children. You do not fight them. I am Jewish so I do not know what a confessional feels like.
Later that night, there was a private dinner hosted by Bob & Suzanne Write. Suzanne, whose grandson is severely autistic, was such a fierce advocate for the autism community. “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 such a notion?” he asked softly. But the momentum was Suzanne’s and if you knew Suzanne Write, when she put her engine into gear, you best get out of the way!
The word fierce does not describe Write. Fierce is someone who fights for what is right, Suzanne Write heard a perfect poem for her next tragedy propaganda and told him that it must be heard. He was warned that it was hurtful and ignored that! He did not care! Still no apology. Lets keep going.
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.
He explains how he made the video. Again, we don’t care. It was hurtful and we do not want ot know what this message of hate went through before completion.
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 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 feces on their bedroom walls night after night 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 was under fierce attack. Alfonso and I were under attack, too. Even a couple of the AS board members protested how awful it was.
Wow even some of the board did not like “I am autism.” It shows how dangerous is truely is. The martyr parents thanked him but the the true advocates were outraged. He goes on why he was right. This is no apology. He is faking one to take the heat off him several years later.
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 lit.” My son could barely speak. My son took seven years to learn how to swim back and forth in a pool. My son is 16 and needs a story board to follow every time he has to wash himself. How on earth can he fully functioning autistic person speak for us Moreover, how can they claim to speak for him?
The “self advocates” he keeps on referring to are AUTISTIC PEOPLE. I said it loud for the people in the back. Great job Mr. Ne’eman. We are proud of you as a community. How can he say how wasy we have it. He just assumes we are all “healthy.” No idea of our struggles. Its not all peaches and ice cream but we can have a great and happy life. Do not tell us how we should feel about ourselves. You say we cannot speak for you or your son? You are not autistic and you are not involved in this conversation. You do not speak for your son, your son speaks for himself!
Meanwhile, the self-advocates fought back asking for the same “How can Autism Speaks speak for us? We are a distinct minority among the 70 million individuals on the spectrum, but we are contaminated human being possessed by evil? They asked. Adults who have social quirks and challenges, who make noises and have a 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?
Autism Speaks is made of neurotypical people. They cannot possibly speak for the autistics. We never claim to speak for the people who need more support. They are perfectly capable to speak for themselves. Neurodiversity is for everyone. Nothing about us, without us!
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 G-d clearly had more for me to learn.
Now he thinks he gets it because his other son can pass as neurotypical. He made his other sona bout him again. Its all about him, not the people he hurt. Still no apology.
Autism is a snowflake disorder and no two kids are exactly the same, even if they may share similar characteristics. Should Autism Speaks – a truely 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 cyber bullying has been weaponized by 12 year olds and politial leaders, should the community’s largest charity ignore one segment of this growth in 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 the survival of the autism-est?”
He goes on to what he thinks is an epiphany. He still doesn’t get it. We are all people and we can all advocate for ourselves. That is the beauty of technology. Even if you cannot talk, there is a way you can express yourself. Autism Speaks does not spread inclusiveness. It spreads exclusiveness.
I realized after years of caring, not caring, rationalizing and spinning, “I am autism” was not my best most balanced moment. I was honest. But should it have been highlighted as anything more than just a dad in pain expressing his unique autism experience? Today, I know I was wrong and do hurt knowing that should my other son Felix read that poem given his struggle with communication subtleties, hemight think I love him less? Typing these words alone fill me with shame at 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.
Your children being autistic is not about you. You keep on making it about you and it is not. It is about the people you hurt. Still no apology.
I am proud that Autism Speaks has been largely transformed. Like any big organziation 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 in the indefatigable co-founder Suzanne Wright suddenly to pancreatic caner and has wisely taken the period of grief as an oporutnity for self refelction. 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.
People see it as a tragedy because Autism Speaks influenced the general public to! They say it changed but wont say how. Very fishy. Still no apolology.
Autism Speaks has illuminated this neurological disorder more brightly than anyone could have imagined and the organization deserves positive credit. That blue puzzle peice which I wear often and proudly- so much so I have a puzzle peice 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 ionic landmarks and buildings 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 its too often thought as a children’s disorder when in fact our children with autism become teenagers with autism, adults with autism, elderly people with autism.
Because of Suzanne Wright and Autism Awareness, the median age of autistic people is 35. It puts us on a spotlight. It increases bullying. We are just trying to live, not have more attention on us. THe increased stress causes suicide. Autism Awareness is litterally kiling us. The research is to try to find a cure and find the gene. This way they can practice eugenics and abort autistic babies. This is just like the T4 Program only for this day and age. The genome research is Aut10k.
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 deficencies, etc) and practical hardships, I think yes, they would want a cure. 15% of ASD people hae epilepsy compared to the 1% of typical people. 49% of ASD people are at risk for wandering, which can turn tragic (Kudos for AS for pushing 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 neurotypical daughters who were given, in addition to the clunky road every kid travels when growing up, they 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 to be brave. How would most autism parents wish to answer this question and would longing for the next generation to opt-out of autism be wrong? I don’t know how to answer this question, I only know I cannot disqualify it.
He says the cure debate isn’t going to be in this piece but he does go into it. He wants a cure but recognizes that some do not. He is not speaking from an autistic perspective, but a martyr parent perspective. It does not count! He give stats for different disorders that happen with typical people and autistic people. They are not part of autism. Those we would want to cure those. Epilepsy, PCOS, autoimmune disorders are not a good thing. A different way of experiencing the word is. Get it now? He asks if he would be wrong for wanting the next generation not to be autistic. I say yes! His daughter asks if her kids will be autistic because she lives in the tragedy narrative. She doesn’t know anything else. The kids aren’t born with bigotry, it is taught.
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 danting 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 tha 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 Speaks. 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.
After spending most of this essay complaining about his sons, he says he loves all his childrne equally. If you did, you would not be complaining how miserable your children make you. HE is saying the hate group is better but does not say how. He is trying to make it sound like they changed when they clearly have not. They do not respect identity first language and what autistic people prefer, as a majority.
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.
There was no apology. He had a real problem using the word autistic. Always “with autism” He has not learned anything. He promises to try to do better. That is not an apology. You know what would be? Actually doing better!
Since he deleted this post and the talented Eve Reiland at internationalbadassactivists.org captured it, I have included it here for your reading pleasure but I quote it exactly in my article. It was a long ride but we made it. This is an important part of autistic history. Thank you for joining me.