My girl cracking herself up with scripts last night
I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”
I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”
My questioner cocked his head. “Okay, so how does that read on a sign?”
I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”
I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”
He was right. I do.
Because for me, trying to reduce autism awareness / education / advocacy into a soundbite is a farce. Distilling our lives and our mission into five words or less is an exercise in absurdity. This is not the stuff of slogans on billboards – this is messy and sticky and complicated and real. This is humanity.
From No Sides From Which to Choose, June 2013
A professor at a local college recently asked me to guest lecture to her Early Education class. They were covering Autism, she’d said, and she wanted to present a variety of real-world perspectives to them. I was thrilled to have an opportunity to speak to tomorrow’s teachers.
The students had some wonderful questions, but there was one from a particular young woman in the back of the room that I will never forget.
“How did you feel,” she asked, “when your daughter was first diagnosed with Autism?”
I took a deep breath and answered honestly. “I was terrified,” I said. “I sobbed. I retched over a toilet bowl. I thought, because of everything that I thought I knew about Autism, that there was no real hope of a future for her.”
I took a deep breath before I continued.
“Because, you see, I didn’t know. I didn’t yet have someone like me to tell me that the terrifying rhetoric out there about Autism wasn’t going to be our reality.”
What I knew about Autism came from things like this … (edited to add: PLEASE take care when clicking on this video. It IS NOT for viewing around children.)
A video created by Autism Speaks whose purpose was, in the name of raising awareness, to evoke pity by showing what they called the reality of autism in every day life. It was in that video that Alison Singer now infamously said, in front of her daughter (whose name I have redacted from the quote below):
That was a very scary moment for me, when I realized I had sat in the car for about fifteen minutes and actually contemplated putting {my daughter} in the car and driving off the George Washington Bridge – that would be preferable to having to put her in one of these {autism} schools and it’s only because of {my other child} the fact that I have another child, that we didn’t do it.
That was what I knew. And therefore, I was terrified. What I didn’t yet know was that Autism is one word, but there is no one Autism.
“What I didn’t know,” I told that student, “was that our lives were going to be far different from what we’d expected, yes, but that both mine and my daughter’s would contain as much laughter as pain, as much joy as frustration, as much hope as fear. I didn’t yet know. So what I felt was despair.”
In 2009, Autism Speaks released another PSA. This one was called I Am Autism. In it, a menacing voice-over purports to BE autism. This is what it says,
I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.
By the time that video came out, my view of Autism had begun to dramatically evolve. This is what I would write the day after it aired:
Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it […]
I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that – but challenges and all, autism is part of who she is.
I later wrote about how I called Mark Roithmayr, then President of Autism Speaks on the day that video came out. I wrote about our conversation, in which I told him that had there been Autistic people on their Board of Directors, there was not a chance in Hell that video would have seen the light of day. And I told him why.
Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?
I explained to Mark that for every single adult on the spectrum that I knew, Autism was not something that they could separate from themselves. That it was simply part of who they are. So if Autism is responsible for all of that destruction, THEY were responsible.
You don’t mitigate saying to an Autistic person, “It’s not YOU that are a burden,” by clarifying, “it’s just your Autism that makes you a burden.”
I wish that back then I’d heard the story that I would later repeat again and again, about the young man who had been told that Autism was a “bad guy” in his head, making it hard for the “good guy” (presumably his non-existent “non-autistic” brain) to do its work. I wish I could have told him how that young man had put a gun to his head because he was going to kill the bad guy.
I wish I could have told Mark that story so that he would have understood that you can’t kill the “bad guy” when the “bad guy” is your brain. That the destruction of Autism is the destruction of human beings.
Over time, I continued to work with Autism Speaks. They are too big, I reasoned, too powerful, to walk away from. I believed that I could make an impact in their messaging. In some ways, I like to believe that I did.
I believed that I could help to save my daughter and a generation of others from growing up believing that it’s okay to say that they never should have existed, that eradication of people like them is an acceptable goal, that, in many cases, they’d be better off dead. I believed that I could make them understand the irrevocable damage that they were doing to the people whom they purported to represent.
To that end, I sat down with Liz Feld when she took over the Presidency of AS from Mark. After meeting with her, this is what I wrote:
The bottom line for me is this – Autism Speaks has done a lot of good in their short time in existence. They’ve grown at an astounding pace – one that made the pains of that growth nearly impossible to manage. Despite their efforts to evolve at the speed of light, they have stumbled in many ways, but none that Liz didn’t acknowledge and seek to learn from. I have made a choice to remain engaged and involved with them. I believe that with or without me – with or without you – they will still be the face of autism for most of the country, if not the world. Given their platform, they will be the ones who have the power to shape public perception. I’m not willing to let them do that without contributing to the conversation.
Despite huge accomplishments and contributions to our community, they have a lot to prove to many of you before you will trust them to get it right. I get that. Truly, deeply, I get that. I simply hope that you will give them – and Liz specifically – the chance to earn that trust.
This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
I read the words and I reeled. After what had felt like so much forward movement, we were back to mothers retching over toilet bowls. We were back to “lost” children and broken, bankrupt families. We were back to fear.
Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
We don’t get to use the numbers that way. We don’t get to twist people into narratives that simply aren’t theirs. To deny that Autism is a spectrum as vast and wide as the entirety of the human experience. We just don’t.
I was angry. I was hurt. I felt betrayed.
I was paralyzed.
But my autistic friends were not. They mobilized, as they do. They wrote incredible responses to the post.
Amy Sequenzia wrote:
Your words hurt me. I am an Autistic adult, yes, I have epilepsy, but this is not autism; yes I have GI problems, but this is not Autism. My family is living, happily and proud of me. I am non-speaking and I am living. I am not lost. The difference is that you cannot love autistics for who they are, so you attack us. Why did you create an organization that spread fear of and hate for autistics? Why don’t you talk to us, or better, listen to us? Your words are full of viciousness. My family sees the sun shine and they see me. They encourage me to be the best I can be and I learn every day. I cannot eat by myself, dress myself, I am not safe by myself but I have plans and I will have a future because my community has my back.
I feel sorry for your grandson. I cannot imagine my grandmother demonizing me the way you demonize him.
I hope you apologize, at least to him. He hears you, you know? The same way we do to and he will, one day, let you know how much you hurt him.
The only fear we autistics have is of people like you using this hateful power to get rid of us. Because you cannot “end” autism without ending us
When you quote the inflated numbers of us, you include a wide variety of those of us you are trying to erase. Why do you not want actual Autistics anywhere near you? Because we have read your financials and know how little money you devote to actually helping people and how highly you compensate yourselves? You use this horrible language to emotionally blackmail loving families into giving you money and time they scarcely have, to further your twisted agenda of eugenics and greed. Are there no mirrors in your house?
This is my daughter. She is not lost. She’s right here. And she can hear you. Whether or not you choose to believe that Autistic people can hear you, they can. How do I explain your words to them? To my daughter? How do I tell her what you mean when you speak of her parents and you say, ” How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?” How do I tell her that her Mama does not see her as a burden and never, ever will? How when you are telling her the opposite?
Do you remember when you met her?
Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.
Brooke doesn’t look up. She doesn’t stop stripping her stick.
Dig. Pull. Dig. Pull.
Our visitor reaches out a hand and cups it below Brooke’s chin.
I freeze. Oh God.
She uses the hand to pull Brooke’s head up by the jaw.
A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …
She does scream, but not in the way that I expect.
“I HATE BEING TOUCHED!!” she shouts.
I am flabbergasted.
Words. Self-awareness. Communication. Self-advocacy.
I know the sentence will need to be reformatted. But I am drenched in pride.
I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.
Our visitor is undaunted.
“I just want to see that beautiful face,” she says. “Lift up for me.”
I am stymied by etiquette. By deference to our host. By generational difference. By convention.
Brooke is not.
She lifts her head as instructed. And growls.
Autistic Self-Advocacy Network
Ed note: Special thanks to Lydia at Autistic Hoya for transcribing the video above.
a diary of a mom 
BRAVO, Jess! Just BRAVO!
Love you,
Proud Mom and Grammy
I am sure there are many, including me, that have given money to this organization, walked in its walks, without understanding….. thank you.
We knew you didn’t understand xx. They are lying to families and using tactics of emotional blackmail. I am heartsick for the pain this organization has caused not only Autistic people but also our loved ones. Thank you for turning your back on them now. Love, Ib
Well done
I am so, so grateful that, as we’ve begun learning about autism after my daughter’s diagnosis, your blog was one of the first that I found. I knew instinctively that so much of what I was reading just wasn’t true for Mae, but I am so incredibly thankful to have a blog like this and your wonderful perspective (and the hope that I feel so often when I read it!) Thank you!
Just have to echo these thanks: I feel the same way, just incredibly grateful that you write this blog, and that I happened to come across it early in our autism journey. You are changing the world with your passion and love.
Jess, I’ve done the same- walked away. And I can’t wait to post this on my page so that one of the higher ups can read it (again). Bravo. This is standing up for your child and so many other autistic people. Autism Speaks is a sham.
Awesome! You keep using your words and Brooke’s words to spread awareness.
ASD was not a diagnosis when I was a kid. If it had been…and my parents had heard the misinformation of the kind that Autism Speaks so often puts out there…my parents would have agreed wholeheartedly with them. My parents have always been uncomfortble with difference…they’ve always wanted to sweep it under the rug. They would have loved the idea that the differences found on the autism spectrum are monstrous, should be disappeared.
To me, that’s the real danger here. Autism Speaks not only presents a point of view that is wrong, and that is very disconnected from autistic community. They validate the views of people who do the most harm to kids. It’s frustrating…I’m often left without a good response to these situations. I tend to feel angry, hurt, and pretty shut down about it. Love that both parents like you and autistics like Amy and Lydia are finding the words and pushing back, making a difference.
So proud of Brooke for advocating for herself. That part made my stomach heard to read. And to Katie for so aptly pointing out she runs the biggest charity and doesn’t know to NOT do that?! I feel for the adults with autism who feel demonized. I don’t agree with the “cure autism now” and the campaigns either. I’m totally behind you and the adults with autism who hate it. But a small part of me understands the need for a call to action, an immediate need for housing, jobs and transition. The fact that when I read that part that is what I think of when they say invisible. Because that is where I am in this journey. I’m looking at transition for my son. When he was in Kindergarten it was tough. This is worse. This is the.rest.of.his.life. and most of his life. If we don’t get people mobilized, what will happen? The unfortunate part is how do you get people to listen without the drama and the showing of the dark side. If we only present the rainbow there will be no need for help. I hate all of it. I totally totally agree with you and I hate what they are doing, but I also understand it. Where does that leave me besides confused, angry, hurt and still without a place for my son? Thanks for this important piece.
I wanted to add one thing. When my son was diagnosed. NO ONE had any idea what autism even was. That was in 2000. 2000. At the time I thought “if only people knew what this is” and what we really needed was awareness. They definitely did that. Did they do it perfectly ? Nope. It was “new”. I think they are finding their way like we all do. We make mistakes and so do they. I think all of us continuing to check them on their mistakes is what is needed. Posts like this are important. I think I have a little bit different perspective because my son was invisible in 2000 when no one knew anything. I went to the library after his diagnosis and there was not one book there. NOT ONE BOOK. Can you imagine? Now he is 17 and we are looking to after high school. There is very very little. We are helping pave the way for all of the younger kids. Sometimes in order to get help and services you have to tell the whole story. Show why we need help.
Michelle, At every turn I’ve said that as long as they are continuing to evolve, I will continue to engage. That as long as they learn from their mis-steps (and mis-steps are inevitable) that I would give them the benefit of the doubt.
Their platform cannot be ignored. As long as the Wrights continue to levergae their enviable rolodex, they will continue to be the most visible “representatives” we’ve got.
Awareness matters. It’s where it all begins. But what exactly are they making the public aware of with this kind of rhetoric? How to help? How to recognize Autistics and how to support them? Include them? Help to keep them safe? I’d argue none of the above.
“Sometimes in order to get help and services you have to tell the whole story.”
I agree. Completely. But this isn’t the whole story. Even for those who live in the most extreme conditions with the highest, most urgent levels of need, this isn’t the WHOLE story. Additionally, to call this representative of the entirety of the 3,000,000-strong autistic population in this country is radically, and purposely, misleading.
As I said to a reader on the FB page, I do not remotely disagree that the fight for services is necessary. That conveying the urgency of need for suport and services RIGHT NOW and in the future is vital. But so is the safety and dignity, not to mention self-esteem, of a generation of Autistic people. We can not — and we need not — sacrifice the latter for the former.
And, my son is 27 and has Asperger’s. Back in my son’s day: when he was about to enter kindergarten, his diagnosis was ADHD with an anxiety disorder and auditory processing difficulties. When he graduated from high school in 2005, the Asperger’s diagnosis happened a few years later. As a family, we always had to advocate – learning as we went. My son’s been in the work force for almost 9 years and it’s only in the past 6 months, that he’s wanted to talk with his employer about how being on the spectrum affects his work style. His personal growth in the past 6 months has been magnificent! And, it was “sticky and messy,” and jaw-dropping wonderful. We’re a bit farther down the path than you are Michelle but, like a lot of people here, I’m reaching out to offer my parent story and to hear yours. Because what I know now is that together, we learn from each other and inspire each other. When both happen simultaneously, it’s a good day.
Truth be told, I decided earlier this year that our team would would be taking a break next week from the AS walk. I know they still do some wonderful things but we will raise money for a local autism charity. Bless you for keeping us informed, Jess. I would be so ignorant without you and others like you. hugs from North Jersey.
Gail, our group in a rural area of our province, does their own Walk for Autism. The money raised stays here in our community and helps our local people with autism. We provide a summer camp, social groups for teens and young adults, outings, etc. It’s nice to know that the money we raise, is accounted for and spent by volunteers who run our support group. We’ve done more as a volunteer group, to help our families than any other organization or government body.
Such an amazing and point on post! I too, was lost when my son was diagnosed. 4 years later, he is amazing, strong and so loved. My marriage has not crumbled, my family is strong and supportive. I would not change any part of who Nickolas is. You go Jess! Tell the world how it really is! Take away Autism Speaks power, because autism doesn’t “speak” their language!
Oh, no…I don’t want to believe it, but I know it’s true, the people NTs look to as experts on our kids, and adults on the spectrum have still got me running to the toilet. Thank you for being my voice, my son’s advocate when I want to curl up in a ball.
Thank you for speaking out and writing this. All I could think of when I read their blog post yesterday was “what if my kid read this? What if any of my kids read this? How would they feel about themselves? Their siblings? Their friends?”
I hope your post and others speaking out today show them what really happens when autism speaks – that hope and support and compassion and understanding are louder than fear, shame, and despair. I hope they take down the post and change their platform today at the summit.
I read this post as I sit staring at my Damien. My handsome, Autistic 9 year old. I was naive when he was first diagnosed and searched out Autism Speaks for information and help, only to find out it wasn’t the help I wanted. D doesn’t cause a burden, my marriage is strong and our family has not fallen apart. We are all there for him, every day and every minute. I love every part of him and there is no ‘bad guy’ in his head. There is Damien. Unique, genuine, analytical, playful Damien. He is but one leaf on the tree of Autism and he’s my leaf to love and guide and support. I proudly do so without Autism Speaks scare tactics and fear mongering.
Jess – I am so touched to see the comments from your mom. I have noticed she is usually the first to respond. Always supportive, always cheering you on. Just as you do for Katie and Brooke. Just as every mother should do for her children.
Oh God Jess, as I was reading this post this morning without me realizing it my boy walked into the room and started reading over my shoulder. His face turned pale and he simple said, “Mom do I make you ill?” I am crying and shaking as I type this. I spent the entire morning trying to undo this and pray that he is just not saying it is okay because he knows how upset I am because that is what my boy with a shit load of empathy would do. I am writing a letter today. I am sending it to Autism Speaks, sending it to Washington Post and to whom ever else I think just might read it because I never ever want to see that look on my boys face again! This has to stop! Never mind the horrible message we are sending to parents of autistic children and to people who no nothing about autism at all…What kind of message are we sending to our kids? I’m ill right now alright… but not because of Autism, but because of the simple fact that a powerful organization with so much money that could do so much good for our community just set my family back a bunch of steps. I work every day to build my boy up, to give him the self confidence to go out in a world that already does not understand diversity and where different is not accepted. To think that in one single sentence he read, because an organization has Autism in its name and therefore supposedly has creditability in his eyes… my boy was knocked down. Yeah I am ready to hit the toilet bowl but not because of Autism… because of Autism Speaks! Not my proudest MAMA moment right now, feeling pretty crappy about not being more careful about what I am reading around my boy! SIGH! Please keep doing what you are doing Jess and the next time they ask to go talk PLEASE DO!!! We need you, my boy needs you. I need you!
Sorry your child saw that. Please, if he allows you, tell the world, and the horrible Suzanne Wright, what he said (but only if he allows you to do that). This is psychological abuse
Oh my God, Sharon, I’m so, so sorry. I hope that he read enough to see that it was a pointed criticsm and not an endorsement of that rhetoric.
This is the whole point, isn’t it? The whole %$#*ing point. Autistic peopole are not separate from us. They are right here, reading over our shoulders. What we say about them matters.
God. I’m so sorry.
Jess it was the actual post on the Autism Speaks site he read. I clicked from your page to that one. We talked about why I was reading it and how hurtful words can be and how we knew they were so not true and how MAMA was going to write a response on my blog and hope that somehow Mrs. Wright would see it. This is the link to that post. If you have an actual email address you can share for her i will gladly email her it as well. http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/
Love to you xxoo
Sharon, your comment has really stuck in my mind and I’ve been thinking and thinking and thinking about it. And I’m so sorry that happened and I really hope you can tell your son how wonderful he is. But I also think that it’s absolutely wonderful that he *asked you the question.*
No, really. I think about when I was young, and what I would have done if I were in your son’s shoes. And I gotta say – I probably would not have asked. I would have read, and quietly accepted it as true and internalized the message. And then I would have walked away and curled in on myself, like I always did. My mom probably would have noticed within a day or so that something was wrong, but I doubt I would have found the words to express it, or explain how I felt.
I am so glad that you have fostered in your son the courage to speak up right away, to ask these questions and give you the opportunity to say that it isn’t true, that there are people who speak untruths. And the fact that he asked means that he did not immediately assume truth it in. He sought your opinion, he understood that you can tell him better than a website can. That’s awesome.
Thank you so much for this! Your words mean so very much to me! This has weighed heavy on my heart since it happened and I honestly had not thought of this in this way. I so appreciate this, more than you know and pray to GOD that my both my kids always feel like they can come to me and ask any questions… even hard ones like he asked. Hugs to!!!
I remember my aunt reading that and one of my cousins seeing it over her shoulder. This cousin is more profoundly Autistic than I am and she asked the same question your son did, to which I answered, “You never make your mummy ill, but Autism $peaks often does.” Now whenever anyone in the house is ill, guess which organisation gets the blame every time? }:D
I was going to e-mail you this morning. I should have known better :0) I read this last night and I couldn’t even form coherent sentences – all I could think was “ARRRRGGGGHHHH!!!!” Of course, I now have my own crises of conscience to wrestle with over here…..
Reblogged this on Transitions and commented:
Finding the right words for your child with autism is difficult. My child is amazing, fantastic and has deficits in learning and social development. His deficits do not define him, but often, we are asked to define what autism makes of us in 2 word sound bytes.
Strong words. Important words. Well said.
To me, the real tragedy is there is such a need for an organization like Autism Speaks, that can raise money, get the attention of lawmakers, conduct important research, connect a divided community, provide resources to families, and yet they seem married to this approach of embracing scare tactics to raise funds and garner attention. Even if its in the pursuit of noble goals, and I’m in the camp that this is calculated decision by AS to shock people unaffected by autism into caring enough to give money, this approach is no longer acceptable. I will have to take a long, hard look at my support for AS now and in the future. I still believe the organization can do a lot of good, but if this approach is the cost, I’m not sure I still believe it’s worth it.
My children are not broken; they are not damaged; they are not wrong. They are so, so different than I am, but I don’t even consider their differences to be deficits. I just see them as different. Of course we need support and help and all that jazz, but for us, we need the world to see our children for the whipsmart, intentional, funny children they are- children who are gifted with the ability to feel real, raw emotion with their entire heart. I have zero intention of fixing something that isn’t broken and I have zero intention of getting stuck in the muck of cure talk, fear mongering, and hate. I have every intention of standing with my children, with your Brooke, with Amy, and Ibby, and Ari, with countless other autistic individuals who deserve the same rights as every other human on this planet. There is so much power in true love and acceptance. I will only support those who promote such values.
Thank you for writing this, Jess. There have been so many times that I have shied away from joining in to the organized autism groups because this type of propaganda festers there. As a parent and a professional who works “in the field”, I have had an inclusive perspective for a long time which acknowledges strengths and values individuals. Those of us over in this camp just have to stay strong, use our autistic adult friends to help lead us, and find a way to get this message out there. It’s not easy. Heck, we’ve been talking about “inclusion” in terms of schools for 40 years!!! And I’m sure every parent who’s been to an IEP meeting lately knows how effective and easy that’s been! Until our society values all and values difference, it is an uphill battle. But one we must continue to wage, one way or another.
Reblogged this on Walkin' on the edge and commented:
“Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us.” Jess, A Diary of a Mom
Pingback: What is the Problem with the Autism Speaks Summit – A Parent’s Words - Evil Autie
Perfection.
I read this at work, thank goodnes, and read that post from her after my son – my lovely 6 year old PDD-NOS kiddo who is reading at a 3rd grade level and would have been able to understand what that horrible “call to action” said. It made me so angry! Yes, things can be hard, but it’s not ALL like that. Her “story” is so ridiculously one-sided and unhelpful!
Why is it that they doom and gloom so hard on the kids? Why don’t they tell the stories of the people who want to work but get “let go” for being “too strange”. Why don’t they talk about the bullying? Why don’t they talk about the amazing stories of technology unlocking the ability for some to communicate? Why don’t they show how the help can WORK? WHY???
I volunteered with my local Autism Speaks when my son was first diagnosed 2 years ago. Thankfully I had been exposed to Temple Grandin’s story so I wasn’t buried in doom/gloom. And my son is on the “quirky” side (what the doom / gloomers consider “not autistic enough”) so the wave of fear didn’t hit me. And like you said, the “bottom-up” message is different. The LOCAL people engage with autistic people. They are more about research and SUPPORT. I was actually surprised to see the anger/fear of the top-down messaging. The LOCAL people are wonderful. I have this piece of volunteering on my linkedin profile, and I’m torn about what to do with it because, thanks to this ridiculous attitude, I’m not proud of the connection. Do I add a P.S.? Do I delete it? I care about the local AS people who REALLY care – how do I make this work and respect my autistic friends at the same time?
Thank you for this post. I’m going to write to AS, because they need to hear from autistic people, and they need to hear from the parents they are supposedly advocating for that they are NOT helping! My son needs support to not be bullied. My son needs support so that school knows that simple modifications will help him succeed. He needs support to know that when he enters the work force, his boss/co-workers will appreciate the quirk and benefit from what he can bring to his job. REAL knowledge that will change the world, that will help our kids, our teens, our grown children live the best life they can in a world that’s already overwhelming.
That’s a tough one– you’re not the first person I’ve run into who has this experience, and is torn. But I believe you need to stand firm against Autism Speaks, and here’s why:
They know perfectly well that doing those amazing things on the local level– donating, advocating, helping autism families buy houses or get services– wins people over to their side.
But only 4% of their funding goes to those programs. They spend 4% to be the big fish in a community’s little pond, to wow families with their generosity. The rest of the money, sadly, most of it from donations, goes to hurting autistic people– with fear rhetoric, with overpaid executives, with research aimed at eliminating autism– all forms of autism– from the gene pool.
So, reach out to those caring, wonderful people who work at the local level. Tell them why they should leave the umbrella of Autism Speaks and strike out on their own. Tell them that, if they care about the wellbeing of autistic people, they need to create their own organizations, or go work for a better organization like Easter Seals (a national charity that works to improve life for people with all disabilities).
Oh my yes. I have been thinking about this ever since Autism Speaks put one of their daunting dark billboards on the main thoroughfare of my city. Lately my son’s autism support teacher has had parents of recently diagnosed children run out of her classroom because they cannot deal with the perceived stigma or trauma or acceptance of having an autistic child. I want to reach out to them so badly to tell them in so many ways, it will be a beautiful life. To put the blinders on to the hateful rhetoric. To look at the sweet little girl over there singing happily to herself who just memorized a new song verbatim. Or the little boy with the longest eyelashes quietly completing a craft. Or the tall boy with the infectious smile who freely gives hugs. Or my son. My son who lights up a room when he enters it. Who greeted my book club guests with “welcome to [my] house! What’s your name!” And then proceeded to say the Pledge of Allegiance perfectly and with so much heart and compassion. It hurts my heart that Autism Speaks’ message is so bleak and negative. Go forth, my friend, and let’s change hearts and minds. I have your back.
YES. Thank you Jess. I’ve never commented here before, but wanted to say I 100% agree with you and thank you for writing it.
My son does not have autism but a condition that impacted his development. Thanks to much hard work he is doing great. We have worked hard on motor skills. What drives me nuts most of all is the adults who say “you don’t want him to be different or children don’t want to be different.”
No one ever asked me…All I wanted to do was help him reach his full potential whatever that is.
What we all need regardless of the diagnosis is help, support and most of all understanding. This often is the hardest to come by.
Reblogged this on ramblings of an autistic wordsmith and commented:
“They need to know that while it is absolutely true that there are Autistics and their families in desperate need of immediate support, and that there is indeed an urgent need for both short- and long-term plans of action for them, they are not to be feared.
“They need to know that autism is only a death sentence if we continue to allow people like you to spew rhetoric like this from on high – rhetoric that demonizes and dehumanizes our loved ones, telling them that they are a tragedy, a burden — a thing to be feared rather than people to be included, supported and loved.”
A rousing call from one mother to Autism Speaks. No more.
Man, I am getting so tired of that organization and their anti-autism nutwitlery that does nothing at all to help autistic children and adults.
Plus, why do more parents need to fear autistic people? Having any child is challenging, but I doubt it’s all negativity and fear.
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Thank you thank you. Since my son’s diagnosis nine years ago, I have been learning that autism is not the “tragic fate” that i was told it was. We have learned and grown as a family, laughed, struggled, celebrated and been triumphant. I wouldn’t trade my son or my life now for anything. Thank you for speaking the truth.
Thank you thank you thank you, Jess.
I’ve never really felt “good vibes” about Autism Speaks. They are heavy handed and suck all the air out of the room, monopolizing the conversation and consuming a disproportionate amount of the limited non-profit funding pie.
This is feeling is evolving.
I am beginning to see them as a significant part of the problem.
My first and continuing impression of Autism Speaks is that they are a bunch of soccer moms who’s children are not as expected – and, therefore, they are tantruming.
Thank you, Jess. For this and all that you do for our children.
Thank you. Please keep being involved — just not in alignment with that hateful organization. I’ve added this post to https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links — please feel free to add any other related links there!
I’ve got some slogans:
1.)autism–some things different, some the same
2.)autism–more in common than you think
3.)autism–talking isn’t the only way to communicate
4.)autism-we are listening, are you?
5.)autism–listen and speak. That’s conversation.
Standing ovation of flaps. Putting on tinygracenotes.blogspot.com too.
I couldn’t believe it when someone linked that awful article to my Facebook page. I am autistic, 25 years old now and have suffered from severe depression for over 12 years. Thank goodness autism speaks is not a UK organisation and that they were not my Mum’s first port of call when I was diagnosed. Things could have been so bad. Your blog is wonderfully written and even I shuddered when you mentioned that lady making your daughter look at her! I still have trouble ‘using my words’ when that happens! It amazes me, however, that despite thousands of posts from autistic people on that article, they will continue to ignore us as a people who exist and continue to misquote numbers for financial gain.. I am going to start following your blog, feel free to take a look at mine too as I write about life with autism.
i absolutely will. thank you!
Thank you so much for this. This post, your evolution, everything you have tried so hard to communicate to Autism Speaks…thank you. I wish you hadn’t had to write this, but I’m so glad you did.
Thank you. Thank you for standing up to their bigoted nonsense.
Here in the UK we know them as Mr and Mrs Wrong
My sons were in the early parts of their diagnosis when autism speaks started their business. As I listened, I realized I had nothing in common with their speakers. I wasn’t devastated. I just wanted to learn how to help my boys. Their message wasn’t kind and their videos upset me. I didn’t want to be the only parent who didn’t support them so I kept rather quiet except for my own family and close friends who I shared that the only organizations I would support and speak for were those who actually helped our kids on a grassroots level. I love autism society and autism nj because they help families individually and they get it. Autism speaks wanted to charge me $40 for a book with information that had outdated contacts. CHOP received funding through autism speaks to conduct testing on my sons so i could find other CHOP physicians to help my sons. I later learned they took my sons info into the ATN but couldn’t get me to the physicians I needed for further testing….their testing of my sons was very archaic as well. I love to listen to self-advocates with autism and read their stories. Many are angry with the autism speaks message and I completely understand. I had a friend come to me after seeing Jenny McCarthy on Oprah. She had tears in her eyes and said I cried the whole episode for you. I thought to myself….why? They are still my boys and its a tougher road but its our road and you are welcome to join our journey….
I sat in a parking lot reading this post and watching the video instead of going to the gym where I was headed when I decided to check FB first. I remember seeing the Autism Speaks video when it came out and thinking “wow, someone else has my life”. At this point, it has been my life for 12 years, so to me it was just telling it like it is. However, I do see your point. Autism is a wide spectrum disorder, and awareness should cover the whole spectrum, not assume that all “3,000,000” are at the far extreme.
My problem with Autism Speaks is their focus on “curing” autistic kids. Autism cannot be cured. I had a geneticist/neurologist confirm that for me when we took our son to him for a last-ditch effort. Autism is genetic, from either 1 gene or a combination of genes, which can be either hereditary or from genetic mutation. What causes it can be different in every kid, hence the “spectrum”. But it can’t be cured. I was told that parents who think they have cured their kids’ autism though diet, chelation, etc, (we have tried it all), never really had an autistic child. Now I don’t know whether to feel stupid for spending all that money, or relieved that I don’t have to do it anymore.
My 16 year old (typical) daughter and I have have discussed starting our own blog, probably for the same reason you did, to bring awareness and understanding. We believe the focus for groups like Autism Speaks should be genetic research, and especially information for typical siblings, so they know their chances of having an autistic child, and providing respite care and therapy for families who don’t have the resources that we do. I can’t imagine not being able to get time with my husband and/or my typical kids to do the things we would never be able to do with their brother. And I certainly can’t imagine what our life would be like now if we hadn’t had access to the therapies and awesome school programs that we have. I just think that an organization that large and influential would serve the autism community better by helping the families living with autism rather than giving them (and the donors) false hope.
Absolutely! And yet, only 4% of AS’s funding goes to family services.
The other thing that really bothers them about me is: you watched their video and felt supported because you recognized your own life in it– the struggle, the misunderstanding, the isolation from your community, the worries. This part is valuable, yes. Parents need to feel supported.
But what would your son think if he saw that video? Would he recognize your life and see himself as your burden? Where does he get to see his life portrayed, from his perspective? What video does he get to watch and feel relieved that someone understands his struggles, his pain, his goals and concerns? Autistic children (and adults!) need that experience as much as their parents, if not more.
The thing with my son is that I don’t believe he would (a) watch the video because it would never interest him, or (b) believe that it relates to him at all. While he does have an incredible amount of empathy and love, we have seen no indication that he understands that his actions have any effect on us. I’m not sure if I am explaining that right, but it is the best I can come up with. Caleb is non-verbal and the only communication we get from him is what he wants (when he knows) and his pleasure/displeasure when he does/does not get it. We also get lots of kisses and hugs, but only when he wants them. He doesn’t understand that he is autistic or what autism is, as far as we know. He is 12 and doesn’t read or write or play video games or play appropriately with toys. He watches TV if it is one of his fave cartoons only, and then he doesn’t really pay attention. He loves his ipad because it makes animal noises and plays music. I think he gets his best support outside the family when he is in a classroom with other kids like him, and teachers/support staff who accept him for who he is, and don’t over-burden him with demands.
I don’t have a problem with the use of “disease” (though I usually use the term “disorder). I don’t even have a problem with advocacy groups like AS talking about how hard it is to be an autism parent. It’s hard, no question. And it draws eyes (and pity) to parents, which helps their voices be heard.
What I DO have a problem with is that autism is treated like the devil. And it just isn’t. There are good things that emerge, like my son’s love of being hugged by anyone (he’s very hyposensitive) and his joy of roughhousing. Of course the communication barriers are very frustrating for an intelligent, nonverbal child. Through it all, autism is PERVASIVE. It’s a big part of WHO HE IS.
I wrote a partial response to this a few weeks ago at Dmitry Laughs: “What I would Change About My Son”. It was in response to those who HATE autism.
Reblogged this on Dmitry Laughs and commented:
Because “Demonizing autism dehumanizes my child.”
This is one of the most powerful letters I have yet to read, powerful and moving, thank your for writing it and Brooke, thanks to you too!!
Jess, I am so proud of you and thrilled that you won’t continue to work with people who don’t listen to Autistics. What a great example to NTs everywhere! getting the message out is so important.
Your words made me cry. And I’ve never been so disgusted in my life as I was reading about that woman laying a hand on your daughter. I was filled with pride – thrilled that she stood up to the monster and spoke for herself. I’m sure you were thrilled.
Every time I find another “autism parent” that Gets It, I feel a little less alone in the world. So thank you for making me feel less alone.
So powerful, Jess. Thank you for writing this.
This is incredibly beautiful, thoughtful, caring, well-written, and all the other good adjectives, and it brought tears to my eyes. I am reblogging and sharing it absolutely everywhere I can think of.
Reblogged this on Restless Hands and commented:
Powerful words.
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I would never want to be on the wrong side of your pen even if you love me…
Wonderful, just wonderful….
A very proud dad
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Thank you. Right before I read your letter, i got a call from my oldest son who is autistic. He is a junior in college and we talked about a class he was in and i was so proud of him, as I am of my other three non autistic children. I know that he succeeds because who he is and because he is in an environment at Marshall University where each person at the school knows and wants him to succeed and because he wants to succeed. he is respected and provided the highest level of dignity. That is what we have to have existing for each person living with autism. Dignity, value, respect and appreciation for each person living with autism.
You have inspired me to respond to AS myself. Great post, one of my all-time favorite posts on wordpress. Followed you and look forward to more of your enlightening words.
Thank you Jess and everyone who has responded. The comments have been really good to read. What a great community you have fostered here.
Understood… completely….xoxox….in fact, REALLY understood!
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This is wonderfully written as usual. I follow your posts. Autism at our house is different from yours, yet the same. We are connected. In my case I was in complete denial that my son, even though he was non-verbal at 4 and had some other signs, could have autism because our autism wasn’t like what AS characterizes. We are happy most of the time as long as we are in our safe places. Autistic adults have helped me a lot! They get it. AS doesn’t want to get it.
That possibility hadn’t occurred to me, Kim. In my family’s case, we just read the wikipedia/webMD signs and kinda went “yep”. But when people turn to what they think is a reputable non-profit group for their info, their concept of autism is understandably distorted.
“AS doesn’t want to get it.” Uhhuh. They’d have to change their entire understanding, their entire donation structure, their entire narrative. And that won’t happen until and unless the public is educated over and above the tripe they’ve been fed by AS. And that’s up to us.
Reblogged this on Coloring Outside The Lines and commented:
I love how eloquently she writes. I love my son. I love his little idiosyncrasies, his quirks, his talents that have grown from what he hyper focuses on (his art) my son has Autism and although I wish that he could self regulate better (emotions, sensory issues, continence, etc.) I wouldn’t change who he is.
I read your blog regularly along with many others…I follow Brooke hoping that one day Ethan will be there too…I see signs that he will…I think this is one of the best pieces that you have ever written…I am a radical to so many because of my beliefs about my children…maybe one day the world will catch up to the truth.
Jess – I’m often floored by your ability to put things into words when I struggle to find the right ones. I left a comment at that article and I posted about it on Facebook, but the thought of blogging about it beyond that just left me struggling to find words … When I posted on Facebook another mom didn’t get it – she didn’t understand why she shouldn’t support AS since they are doing *something* and because she DID have to deal with so many of the things they talked about in their article … my reply back was way too long-winded – I wish I’d linked her to your article instead 😀
My husband and three guys are all on the spectrum, in crazy and awesome ways they all defy expectations and turn my world upside down, in a great way. Even with the challenges that come with it all, I can’t fathom belittling them, lumping them all together, or otherwise taking away their dignity and respect by demeaning their very existence. I can’t fathom denigrating an entire population of folks who are different by saying that not only are they all exactly the same, but they are the same in a disturbing, horrible, hurtful way.
One of my guys is old enough and is very high functioning – it would break his heart to read that travesty of propaganda. He has a hard enough time feeling different and trying to fit in and still be himself … he’s also the staunchest supporter you could ever hope for on his brothers’ behalf (and yes he still thinks it is highly amusing to tease them, annoy them, wrestle with them, and otherwise act like a brother with them).
I’ve found my GREATEST insights into what is going on in my kids’ world by talking with adult autistics – they understand what my guys are going through in a way that Autism Speaks just isn’t even bothering to do. I liked that you showed your progression as your understanding about your child and about autism in general grew – so many parents don’t get that it’s a process of understanding your child(ren) and part of that process is the desire to do so.
Don’t sell yourself short. Your words are perfect. If there was a like button, I would have given you a thumbs up.
Thank you.
I have defended Autism Speaks for years as I truly thought their goal was awareness, research and treatment. True, I have cringed at some of their PSA’s, but again, I told myself the ends justified the means. I told myself they are working for the severely affected individuals, the ones who need the most help. I thought maybe b/c my son is high functioning that I didn’t have a right to criticize. I was wrong. After reading today’s letter from Suzanne Wright, I can no longer support any organization that would tell me my son, my family, our lives are wrong. I am so sad that this organization is tearing our community apart. But I finally know….they are wrong. Jess, thank you as always for your incredible communication.
Well-said. I used to be a more hesitant supporter, but this dropped the last straw on my back (more like a hay bail!)
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I’m saddened by the ideology that the only way to raise money for improvement in Autism Services is to only portray the difficult side. My husband said this after I read the op-ed written by Suzanne “When you are talking about a small percentage of the population, even though it is growing, how do you get a call to action? You raise flags.” I don’t like how they are raising the flag!
Wait wait wait?? Brooke yelled at the president of autism speaks?!!?!
And GROWLED at her??
I am all flappy about that. Because it’s awesome. Brooke = my hero today.
One of the many reasons why I am probably not suited to be a parent:
I *would* have slapped her hand off of *my* daughter. In fact, I’d probably have punched her and threatened to have he arrested for child molestation. I’d point out that the papers would be very _interested_ to know that she was “inappropriately touching” a “young autistic child” who had “clearly expressed her displeasure,” isn’t it wonderful how you can make anything sound dirty?
And, of course, that wouldn’t set a good example for my child.
The correct response, of course, is a loud clear no, and gratuitous application of mace upon the second attempt.
We are fighting for our children without minimizing or degrading them while linguistically separating what makes them who they are from them.
Just sayin’.
I’m happy to hear you say this. You–and your family–are too good for them. I am glad you are done.
Thank you, Jess, and Brooke, each for speaking up in your own way. Good to have you each aboard, as an ally and a self-advocate respectively.
I love this comment. B entering the world of self-advocacy. In this case, with a phrase and a well-placed growl…
And Katie too — becoming an effective ally.
Hats off to all three of you: Brooke, Katie, and Jess.
I love that this discussion is happening. These kids/ adults have so much to offer and teach us. This shift in perspective is critical. Thank god were starting to shaking off the “cure” speak and look at what these kids can do. I’ve been sourcing jobs in the community for my 16 year old low verbal son. You would be amazed at how much is out there when you shift out of the cure perspective and into the integration model. You can see what my kids’s doing at PIEpdx.org Good work Brooke, Jess is going to make a great advocate for her community.
I saw Ms Wright’s post yesterday, and honestly it made me sick to my stomach. I am the proud mother of three beautifully autistic children, and I am still having trouble wrapping my brain around the idea that people actually think this way. What did encourage me was the comments section. Just amazing. And this. And that this community has developed such an amazing ability to mobilize and advocate on behalf of themselves and for all of us. Honestly, as sickening as I felt these videos and her post were, even more I stand in awe of all of the autistic self-advocates and parents and friends who responded with such force and such grace. It makes me so happy to know that when they are a little older my children will have this amazing community to welcome and support them. So thank you. Thank you all for just being here.
Sometimes change happens because every time someone gets it wrong we gently, repeatedly, consistently show them another way and sometimes it happens because we stand up and say ‘no more’. Each way has it’s time and place. Thank you for bringing the full force of your talents and your passion and your courage to each and every way you push for change.
Thank you for this important post.
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Thank you for this; thank you for sharing your story. Acceptance is the answer to that one-word campaign, don’t you think? Our differences make us beautiful, and not one of us should be cleansed of them or made to feel ashamed for needing help. It’s taken a lifetime for me to understand that, but it sounds like (with your help) your daughter will not have to waste years on that lesson. And THAT is a beautiful, beautiful thing. Thank you.
I do not have a child that is autistic, but have been around and worked with children with autism. You have done an amazing job not only as a mother, but at educating others. I want to thank you for standing up and speaking up. I will do the same.
I’m a father of a 5 year old autistic boy. Thank you for writing this really informative blog posting, and I totally agree. My autistic son has so many super powers and I’m privileged to be his father.
Reblogged on Just the Vax with this comment: This letter to Suzanne Wright of Autism Speaks appeared on A Diary of a Mom. Autism Speaks cannot be left to portray autistics as damaged and in need of a cure and this mom gets that. Now only if Autism Speaks will get that as they presumptuously speak for autistics without having any autistics in their organisation.
Ive shared this here,
http://sharon-theawfultruth.blogspot.com.au/2013/11/a-view-of-autism-speaks-from-afar.html
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I had never heard of this organisation – but I’m horrified. I can only imagine how I would feel if an organisation like this claimed to speak for me… I can totally understand why you tried to engage with them, but reading this, I can also see why you’ve stopped. Best of luck for forming a rival narrative.
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I am Autistic, And I have a Voice, Largely Ignored as it is, and given the sound of Other peoples Vocal vibrations, I am ignored, Dyeing slowly in my sleep, loosing my breath as other people speak.for me in disbelief. I will die, because I am not heard, I will die, because I am seen as inoperative, unintelligent, and to be disregarded at others words. I am Autistic, And I had a voice, unfortunately it has been silenced by those who refuse to show respect and compassion, View me as an equal, Do not speak as me, or for me, I have a voice. I will use it.
(Also thank you for this post. I hope it goes further out then it already has.)
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Well said, thank you so much.
I love this post Jess. I worry so much for our children and what the words that AS uses to describe them. I find pride in everything that my children do – the good and the bad because that means that they are trying, that they are doing, that they are living. I find awe and admiration in my children every day that I am with them and with every moment that I share. Especially when they use their words and tell me what is bothering them and what is effecting them, I gleam with pride. How could a group that is supposed to “speak” for our community, for our children, for our friends, be so deaf to the truth?
If I may address that as an autistic who is often ignored, It is hard to listen to what other’s are saying when one speaks over them and for them
Not that I am saying you do that, I mean Autism Speaks,
Thank you for the clarification. 😉
🙂
Is it me or did Autism Speaks close or take down all the comments on Ms. Wright’s Op ed?
I still see them on my phone. For some reason I don’t see them on my PC, but that was the case yesterday as well.
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Okay, I honestly have to say that even the worst things said by AS are things I have heard vehemently & heart achingly expressed by almost every single mom in our online support group daily. It does suck, it is hard, and it does feel like I, our family and my marriage has suffered intensely at times because of Autism. Yes, there are joys and moments of victory, but so were there in the Holocaust. If I had the choice I would NEVER pick autism because of “everything I’ve learned from it”. All I have to do is look at every counseling session, SIBR or questionnaire that I’ve filled out to see that what they’re saying is true. Would I love to be like one of the women who say child birth is “a little intense or uncomfortable”? Yes, but that would be a lie. This has been brutal, heartbreaking and beyond anything I ever could have imagined. To be completely honest, on my part, I agree with much that has been said; but the truth hurts. Deeply. I love my son and would never give him up, even if I knew before he was born what we’d go through. But I also sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, any social gathering for that matter-even bowling or going to the grocery store can feel like I’m being beat by this awful disease! Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it. Some people have the luxury of money or extended family to rely on, many of us do not. Should we make the best with what we’ve got? Absolutely, but that doesn’t mean pretending to the rest of the world that it’s a “gift” or anything short of an ongoing challenge. They don’t advertise Boot camp as a getaway, neither should they make autism out to be just something “different than expected”. That would also be completely irresponsible & untrue. Maybe not for you, but for the hundreds of mama’s I know who share their daily challenges it’s absolutely overwhelming at times.
if you compare autism to the Holocaust, you are referencing a situation in which many groups — including people with disabilities — were mass murdered, and you are saying it is equally tragic that disabled people *exist* in the first place.
What’s wrong with you? I thought NTs were supposed to have empathy and tact.
tobhiyah,
i hear the hurt in your words. and i’m so glad that you have a support group where you can talk to others who have similar experiences and vent about how you feel. because it’s necessary to have a private place to be able to say things that you would never want your child to hear. for any parent, that’s important.
because when we write about those feelings here, or on a website, or in any public forum where they are on view and will remain accessible forever, we speak in front of our children and in front of autistic adults. and when we talk about the entirety of the autistic population as “existing but not living,” “kidnapped,” “lost” etc, we negate the vast spectrum of experiences that autism comprises.
when we compare autism to the holocaust or call it brutal, heartbreaking, or an awful disease, we erode the humanity of everyone here who shares that neurology.
no one wants you to sanitize your story. this isn’t all unicorns and rainbows. some of it is really damned ugly and hard. but i guess what i’d ask you to consider is whether or not you would say this not even just in front of, but To your child.
would you say, “This has been brutal, heartbreaking and beyond anything I ever could have imagined. To be completely honest, on my part, I agree with much that has been said; but the truth hurts. Deeply. I love my son and would never give him up, even if I knew before he was born what we’d go through. But I also sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, any social gathering for that matter-even bowling or going to the grocery store can feel like I’m being beat by this awful disease! Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it,” TO your child?
because when we say it here, we’re saying it to all of our children and all the autistic adults who are here with us.
i’d urge you to read sharon’s comment above, about what happened when her son came upon Mrs Wright’s post and how it made him feel. Or Zoe’s response to your comment to see how it made her feel. You might say your son can’t read these words or wouldn’t understand them. i don’t by any means want to put words in your mouth, but if that were to be the case, I’d ask you to reconsider that notion as we continue to see more and more evidence that autistic people, speaking, non-speaking and everything in between, are perfectly cognizant of their world, if not far more so than their Nt peers.
i hear you. i really do. i have a lot of very close friends who experience autism very, very differently from the way do. who, or whose children, live with overwhelming struggles – with no discernible method of communication life is hard. and help is needed. as i said in the post, both short and long term support is needed urgently. but it can’t come at the cost of the safety, dignity and self-esteem of your son, or Sharon’s son, or Zoe, or my daughter. And i firmly believe that doesn’t have to.
I was already pissed after reading that horrible post at Austism Speaks but after hearing about your encounter with her doing that to your daughter, I am even more convinced that these people need to be shut down. They are dangerous.
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Well done! I love the story about Wright touching your daughter’s face and forcing her to make eye contact. CLEARLY Wright has little knowledge of how to behave properly around people with autism. Good for her for speaking out (I would have been so proud!!!)
I just visited the op-ed link to send it to someone, and all of the comments have been taken down. There were almost 200 comments there, 98% of which were parents and autistic individuals speaking truth to power. If anyone has a screen shot of this, I would love to know how to get a copy so we can get the information back out there – and to show that once again AS is trying to silence those who don’t agree with their perspective. It’s just really sad.
Ignore that post. My computer was acting up. There are now over 300 comments on the site. Jess, feel free to delete both of these if that makes sense. Sorry I goofed!
it’s not you. i don’t see the comments on my pc, only on my mac or my phone. it’s really strange.
I posted this over on Pucks and Puzzles Pieces, and the same applies here. With the additional comments that, your stories above about the previous PSAs and meeting with Suzanne Wright, only help cement my final comment.
Ahhhhhhh…I needed to take a breath. I just came home from a long day at work, and my wife asked me if I heard what happened today with Autism Speaks. No, was my response. An hour or so later here I am. I still consider my self a “new” autism parent as our son’s diagnosis was only a year and a half ago. So with that, I have never quite understood the issues that some people within the Autism, our Autism community have raised with Autism Speaks. I saw Autism Speaks as the voice of Autism, spreading awareness, which we desperately need.
As I read through the letter from Suzanne Wright, I realized that she was not speaking of my Autism (our son is high functioning). Did I agree with the comments, no, not at all, but the thought of a national plan (even though I am Canadian) was something I can get behind and agree that we NEED. The further I read, the more I wondered how those in my position fit in to this national plan. As I read through your comments above, I realized, amongst other things, that maybe we didn’t fit in at all. More alarmingly, as I thought about the comments in the letter, the comments above and other blogs, I realized that I did not want to fit into a national plan based on this philosophy of shock and awe.
My wife and I have fought to understand Autism, we understand that our Autism is not everyone’s Autism. We work to make sure our family and friends understand this same thing. Its a struggle that I am sure we all share. The comments in Suzanne Wright’s letter seem to indicate that Autism Speaks does not understand this. I do not want my family and friends, or the general pubic, to think that this is the only Autism. I understand that this may be Autism for some people. I understand that we need to talk about those people, they NEED help, I get that I really really do. But my Autism, MY SON needs help too. If a National Plan, the public’s perception, is based on this, Autism Speaks shock and awe version of Autism, where does that leave us? At the very least, it has the possibility to make our struggle, for help, support, awareness, everything, that much harder. I apologize if that sounds selfish, it is certainly not meant to, nor am I implying that we need help more then those that are more severely affected by Autism. Only that we all need help, and this shock and awe version may not be the way to help us all. If Autism Speaks is our accepted national (international) voice, and for all intents and purposes it appears that it is, at least in the general public’s view, should its mission not be to help all of us.
I can see how this position, especially from its founder, can cause some people to distance themselves from Autism Speaks. Unfortunately, I think I am joining those ranks.
Jason
this was wonderfully written, jason. thank you.
Thank you so much for everything you are doing!
I had no idea these kinds of videos and things were coming out from them 😦 I hope your post will open some people’s eyes. The video was heartbreaking. I just wanted to meet those women, the parents of those children, and tell them, children grow up, it gets better, stop trying to change them into something else, just help them be comfortable in this world. They are not a generation being thrown away, they have not had something taken away from them, unless it is your belief in them as the people they are, not someone else that you dreamed they would be. I am grateful I didn’t learn all these bad things about the autism spectrum before. In some ways I think it was better to find out as an adult, despite all the struggles, if this is what people see when they look at us.
Thank you, Jess! I am linking all the blog entries, articles, videos, etc. I can find on this topic (along with some of my own comments) here: http://paulacdurbinwestbyautisticblog.blogspot.com/2013/11/autism-speaks-kidnaps-policy-summit.html
So beautifully written. You, without a doubt, nailed it. I pray that this will be read by AS and that they will see the (huge) error of their ways and use their platform to do good.
Can I also say, that I am in awe of your Katie? I mean really. I love that she took the time to explain to Brooke that she DOES enjoy to be touched, but only on her terms and not by strangers. Nearly every post you write I am humbled by Katie’s compassion toward her sister, and above all, her ability to UNDERSTAND Brooke on such an amazing level. It is so very touching. You have two very amazing girls! 🙂
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Hello. I hope this reply expresses what I’m trying to express accurately. While I am diagnosed ADHD, I haven’t been diagnosed on the autism spectrum. I don’t have kids or siblings or any family that I know of with an autism spectrum disorder.
I first saw this article from a friend’s facebook post (http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/ – comments led to here). I must admit although I am in my second year of medical school, most of my knowledge about autism came from part of a 1 hour lecture titled “Introduction to Child Psychology” under a subheading of “pervasive developmental disorders” which includes ADHD, and Rett’s syndrome. For ADHD there were a few celebrities put up to show my classmates that people with it can be successful (which was nice for me – I rarely disclose my diagnosis), but only Dr. Sheldon Cooper from Big Bang Theory was put up for Asperger’s reference. Aside from that frame of reference, all I had really heard before about autism or Asperger’s was what’s in the media, like that House episode with the autistic child and so forth.
I wanted to say thank you for this post and making me reconsider a lot of my viewpoints. I think previously I would have viewed breaking the news to a parent that their child has autism on the same difficulty level as breaking to someone they have terminal cancer. My previous impression about autism was that the parents’ hopes for a normal life were over, their child was somehow “broken”, and they should be pitied for how much their lives would suck now. I’m glad I’ve read this piece as well as the comments and ashamed of my previous opinions.
I think I had never realized that the difference between how my own experience of ADHD differs from how ADHD is portrayed occurs with autism as well. The portrayal I’ve seen of ADHD is of the annoying kid in class who can’t sit still, won’t shut up, and can’t learn so they never will succeed in life. Yes, even with medication ADHD has made some things harder for me (mostly in inability to pay attention to most conversations or my tendency to wander off topic). But if I use that rapidly shifting attention and ability to jump from topic to topic constructively in putting together two symptoms that most people wouldn’t connect together and seeing the underlying problem, it’s a huge asset. The possibility that autism spectrum might have been treated the same way by people on the outside looking in hadn’t occurred to me until reading this. Autism is a range of issues, and while with autism a child might not interact with others “normally”, that doesn’t mean they can’t succeed. Autism doesn’t mean that the person can’t offer wonderful things to the world. It’s a lot more work, and a lot of struggle, but success shouldn’t be measured by money or prestige. It should be measured by smiles, by good memories, by happiness in both yourself and those around you.
I know I put my mom through the ringer as a kid prior to being diagnosed and medication has actually really helped me get a handle on the parts of ADHD that weren’t assets. I imagine it is incredibly frustrating and difficult for everyone on here who either has a child or themselves has this diagnosis. My understanding is there are very few options to help them work with the autism in some way similar to how I work with my ADHD, but please feel free to correct me if that’s inaccurate. I would love more caring and compassionate resources on how to help. But few resources added to misconceptions like what I had from people outside, all I want to say is I’m sorry for my previous views. I hope this very long post perhaps lets you know that your writing does make a difference, as you managed to change one person’s mind. Autism shouldn’t be seen as a sentence to a long miserable existence mourning what might have been. It doesn’t mean that the person doesn’t have wonderful things to contribute or a beautifully different way of viewing the world. Thank you for opening my mind.
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Thank you. I am a young autistic adult, and what Wright wrote broke my heart. I felt like… even Autism Speaks thinks I shouldn’t exist. I struggle with depression and am trying to find my place in the world. It’s very hard to be told that I don’t have a place, especially by someone who seems, on the surface, like they should support me.
So thank you for what you wrote. I needed to read it, and to be reminded that while I may not be “normal”, I am still a human being, god damn it. There IS a place for me.
Yes there is, damn it.
Hugs.
God bless you, chinchillazilla (love the name!). What is truly unfortunate about Suzanne Wright’s article is that she does not differentiate between her own experience with autism (as sad as that experience looks to be) and the experience of thousands of others – both parents and children and friends and family. While Suzanne Wright may think and assume she speaks for all of Autism Speaks and all of their supporters, please please know that she does NOT. I know many, many people involved with AS, of course the majority of us are parents. NOT ONE of us wishes our autistic children, or any autistic individual didn’t exist. I love my autistic son with all my heart, and I don’t think the same way she does. We live with joy and hope and we delight in our son and who he will one day be. (He’s 8.) Suzanne Wright does not speak for everyone in Autism Speaks. That is to say that many of us in AS are severely disappointed in her words.
You DO have a place in this world. I support you, chinchillazilla. You were created for a purpose. For LIFE. Not just to exist. You are important in this world.The parents with whom I am serving to fight for those needs and services don’t think the way Suzanne thinks either.
Keep your chin up – not because someone else is lifting it for you against your will, but because YOU hold it up. Blessings!
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Jess,
I just wrote my own response to Wright’s post as well. It is more than frustrating that I never hear her speak of the joy and hope that can be found in individuals with autism. I was at the Summit. I applauded the efforts being made on the housing fronts to enable autistic adults be able to live more independently. I personally don’t believe there IS a cure for autism, nor will we be able to fully understand it or control it. I have no desire to eradicate persons with autism, NOR do I support any notion of research for the purposes of eradication through abortions (which, I have to say I have never actually heard or read AS ever say or imply that.) In any case, I am fighting hard for equal benefits of autistic children and treatment everywhere to enable them to live life to its fullest – in whatever capacity that means for each child, including my own son.
If you’re interested in reading MY response to Suzanne, you can find it here:
http://hopeinautism.blogspot.com/2013/11/a-call-to-hope-response-to-suzanne.html?spref=fb.
I found the parents at the summit to feel the exact opposite of Suzanne. We ARE living. We are fighting for our children without minimizing or degrading them. We celebrate who they are with autism. It’s not always easy to raise and train them. It’s downright hard sometimes. The Summit even showed several videos of those celebrating heroes – not people fighting for autism, but autistic individuals themselves – brothers and sisters, sons and daughters of neurotypicals who were loving purely and teaching soundly every day through their beautiful autistic brain. Shame on Suzanne. That post was an embarrassment for so many, and even within AS, MANY are speaking out. I hope that our voices will be heard just as loudly as hers.
God bless!
We are fighting for our children without minimizing or degrading them while linguistically separating what makes them who they are from them.
Just sayin’.
I have until today read only two things your posted on your blog. We have absolutely nothing in common. I doubt we’ll ever meet. I came to your blog to say thank you. Who knows how many parents out there are being silent when they should have stepped up and spoken the truth about Autism Speaks. You have my deep respect for doing so. Peace.
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I hope you don’t object, but I referenced this post on my own blog; if you do have a problem with it I will be happy to remove the link. Just figured I’d let you know.
d’oh. Address is: http://neitherhighnorlow.wordpress.com/2013/11/15/a-letter-to-an-autism-mom/
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I have pruchased things in support of autism speaks not knowing all of this. Knowing this now breaks my heart.
I do not have any children. And I am not related to anyone with autism. But I have worked with a few different autistic children and have been changed for the better from knowing them.
I want to do more. To help. To understand. To support. To love. What can I do?
I’m autistic, and I can speak for myself, and I teach early childhood educators about autism and STEM. It is wonderful to see a parent not only advocate on behalf of a child with the child’s interests coming first, but also to promote the maximum self-advocacy and that of other children and adults, as an ally. AND also to take on issues that we’re not always able to take on on our own, as doing the daily life as it is takes a lot. I appreciate your thought and your research and support for your daughter, which is the main point, and by proxy for us all.
My sister-in-law sent this to me, and boy it made me mad for all kinds of reasons cogently explained above. So I’m going to say +1 to all of them.
More important than any of the crap about what Autism Speaks does: it is so, SO wonderful to hear that your daughter stood up for herself like that, and had such self-awareness and insight and expressiveness afterwards. She was even reassuring her sister that it’s OK to touch her! Those are skills I still struggle with now, in my thirties. And I don’t think I ever manage to be happy and engaged in any activity with another person for four hours at a time, come to think of it.
My diagnoses right now aren’t on the spectrum, but I have a lot of issues similar to those described by people diagnosed with HFA and Asperger’s. And several members of my family, including my AWESOME niece and nephew, are on the spectrum, some much more impacted in daily life than others. It absolutely infuriates me when “advocacy” people pull the kind of crap that Autism Speaks consistently does; I’ve heard for years from adults and teens on the spectrum how awful AS is, and this entire post just adds more fuel to my fire. And, who on earth would touch anyone’s kid like that, especially after the first sign that it’s not welcomed? When adults do that thing to other adults, we start talking in terms of “assault;” it’s at the very least several yards past mere rudeness.
Sometimes I think the key role that parents of non-NT kids play is like that of an offensive linebacker in football – shoving the idiot adults around, creating space for the kids to be their brilliant selves. Space to realize that they’re OK, that they’re different but not “broken,” that problems can be solved and things can be made better, that it’s not “wrong” to be yourself. You know, all the basic things we all say we want all children to learn – unless of course they have some kind of diagnostic label, in which case aren’t we all just so generous for letting them breathe and we had better figure out how to “solve” them because they’re very annoying right now. Ugh. It’s taken over thirty years to get to a place where I don’t hate myself for being depressed and “strange” (no one can decide yet what diagnosis best fits in the “strange” slot for me.) Why on earth would you try to make people feel worse than what society already generally feels about anyone who’s even a little bit different? Especially people you claim to love, people you claim to want to help! UGH!
(BTW I recommend she retain the skill of shouting “I DON’T LIKE TO BE TOUCHED” at the top of her lungs, because it can sometimes be the ideal response. There are jerks in college who need to hear that – you should at least give them the one chance, in my opinion, before you knee them in the gut. You can also try “I DON’T WANT YOU TO TOUCH ME!” as a sort of less-self-stigmatizing or more-accurate version. My gosh, she didn’t even hit that woman. Go Brooke! You are way past the 50th percentile on adult self-advocacy already!)
Unless I’ve gone a little crazy, the op ed looks like it’s been edited to be less awful, making the earlier upset commenters seem over-reactive which pisses me off even more. If anyone has a screen shot of the original piece, perhaps that can be posted somewhere so we can put it back out and expose this newest crappy move. They didn’t have the courage to apologize, but instead decided to try to pretend everyone else is wrong? I just can’t believe this level of unprofessionalism and disdain.
As far as I can recall, and the quotes in Jess’s post are all still verbatum, it doesn’t look edited to me…
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Greetings, I’m new to this subject and am learning of it on a professional level (Just completed Behavior Analyst Assistant Training) I learned a lot there but I learned more here. Especially from the comments of those in the “Spectrum”. Thank you so much for helping me learn. Maybe I will be able to be useful. BTW Brooke is my Hero too 🙂
Hi there. I think we all need to keep learning about this wider than wide spectrum. My 8 year old grandson is autistic and I hope you and anyone else might like to click on this link for a poem I wrote. I’m sure many will understand it. Cheers…Neil
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I get the viewpoint of the higher functioning kids/adults. My son needs lifelong care 24/7, non-verbal, not toilet trained, not for want of trying. He still doesn’t know where his bedroom is, he still can’t find his coat or shoes if you ask him. He is 14 years old. My son is a gift from God, we have all learned so much from this journey. Would I change the path of this journey – yes, HELL yes. Do I agree 100% with AS? No. Do aspies maybe need an advocacy group dedicated to their needs? I think so. In the meantime, I’m dedicated to anything that can make our lives a little easier.
“She lifts her head as instructed. And growls.”
Way to go Brooke! I wish I had her courage! To this day (and I am getting to be an old man) I can’t tell people not to touch me when I don’t want to be touched, or not to assume that I’m angry or unhappy because I don’t walk around grinning like an idiot all day long.
I can think of more than a few people I wish I had growled at.
My response… http://www.autismitsallinthefamily.blogspot.com/2013/11/dear-autism-speaks.html
Amen. Love the au-some horse you rode in on, sister.
[People. Read this. Please.]
Thank you. 🙂
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What happened to Brooke is why many people on the Autism spectrum grow up with a fear of other people. People think they can just go up to an Autistic child and mess with them, like they’re less than human or something? I don’t understand it, and then they act like we’re acting out or melting down because we’re trying to communicate “DON’T DO THAT!”
This is why many Autistic people associate interactions with other human beings, the way a Neurotypical person would associate interacting with a villain from a horror film. People treat us horrifically, they terrify us, they touch us without our permission and force us to do things we don’t want to do. Everyone is upset when the guy with a chainsaw does it, but when a normal person does this to an Autistic person it’s seen as no big deal.
I’m saying this because I came to a realization the only way I learned to stop fearing people was from watching horror films, because they taught me my fears aren’t ridiculous they’re valid. In Special Ed many children with Autism are taught what they fear is ridiculous and they need to just get over it. Why would we say that to them, when we would never say this to a neurotypical child? Why is it seen as even remotely okay to jerk a young girl’s head up like a horror film villain and forcing them to look at you. This type of behavior is a common theme in horror films, the prevailing message is only bad people would do this, so why is it okay to be a bad person to Autistic children?
I’ll never understand it, I’m glad Brooke spoke out. It took me 20 years after being brainwashed in Special Ed for years that my sound sensitivity was a “phobia” and to just “get over it” to feel I had a right to stand up for myself. Grabbing someone by the chin and demanding they look at you, is something I’d associate with Freddy Kruger. Maybe these Neurotypicals need to spend some time learning about the empathy they claim we don’t have. Maybe we lack empathy, after years of being shown no empathy by Neurotypicals, it could very well be their fault we just shut down and stop trying. Oh, then they’d have to realize perhaps they’re not as superior to us as they like to think they are.
Hi Jackie. I’m very sorry that you had to deal with all that. I want to let you know that there is a wave of neurotypicals out there, like Jess, who have listened to autistic adults like you, who have listened/paid attention to their kids, and who are doing their best to “get it”. We are also pushing back on the no-empathy BS, and calling out other NT’s who lack it themselves.
Thank you for giving us the horror movie analogy – it gives a very clear picture of your perspective.
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this is an excellent and heartfelt story. thank you for sharing, and so eloquently demonstrating the exact problem with AS as a “charity”. they just don;t understand the thing they claim to speak for.
Bravo to you and to Brooke
I would love to shake your hand. You had me crying with pride. You said that so very well. I am so sorry that you had to deal with that, but I am so glad that you did deal with it, and did so beautifully. I’m so glad that you didn’t stop, so glad that you made your voice be heard. Bravo to Brooke for speaking up. That was awesome! I want to thank you for sharing this.
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Jess, I have so many things to say about this story! The first thing I will say is THANK YOU for writing this!
I have a 10 year old Autistic son. That video is very disturbing and speaking like that in front of an Autistic child makes me beyond irate. I couldn’t even finish watching it for so many different reasons.
I also learned new things about Autism Speaks from this post. Us parents that have a child with Autism, or an adult with Autism are so desperate to find help, information, resources, etc. It’s hard enough to advocate for ourselves or our children, but to then not be able to trust the ones that are claiming to support and advocate Autism makes me nauseous.
You hit the nail on the head when you said “Autism is one word, but there is no one Autism.” So many do not know that, especially if they do not know about Autism. I didn’t know anything about it until my son was diagnosed. I learn new things about it every day. As a single parent, it is the hardest, scariest thing I have every been through. My son is an angel. He is the sweetest, well behaved child I have ever met. He loves everyone he meets and everyone he meets love him. He is so sweet I worry because he doesn’t know how to be mean and as we know, there are so many mean people in this world. I could go on and on of course, but thank you again for sharing this story. Unless we speak out about our experiences, like you did with this story, people will not know. Thanks again!
Jess, i need your help about something regarding this topic. Now that it’s autism awareness month, commercials about autism are back on TV, and i just came across a horrible commercial by a respectful organization in the middle east.
I was absolutely mortified, as this organization in particular, is known about its weight in the community, and how much it gave for autism. I personally don’t think they have intended to portray autism as awfully as they have, but this is how it looks like! while we are trying to build more understanding and acceptance, this commercial could destroy all that within 30 seconds.
I am thinking about writing to them explaining why this commercial is awfully presented, and i hope I could get the support from international organizations and mothers like you. I hope you could e-mail me so I could tell you the details about it all.
Nada
Nada, Ugh! Is there a link to the commercial that you can share here? Perhaps if you share the story on the Community Support Page we can crowdsource some ideas.
Sorry for the late reply, Jess. there is a link to the commercial but I was hoping to do this in private as to not spread the commercial, and not cause a bad reputation to the organization
Sorry to scuttle your boat, Nada, but Autism $peaks knows exactly how offensive everything they put out there is and why, and they just don’t give enough of a crap to do anything about it. Believe me when I say that even Temple Grandin is too high functioning to advocate for non-verbal individuals in the eyes of that poisonous organisation.
I was not talking about Autism Speaks here 🙂 I think in this part of the world, people are more aware of self advocacy, and more open to challenge organisations like Autism Speaks. For us, people are so desperate for help and much of the awareness of disorders like autism comes from the media. If the media portrayed autism as horrible as that ad did, this is the idea that sticks in their mind unfortunately.
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Hope.
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An Autistic Speaks to the Community – A Call for Action.
This week is the week America will fully wake up to the Autism $peaks crisis.
If six million people in America one day went missing – what would we as a country do?
If six million people in America one morning were wiped from existence – what would we as a country do?
We would grieve. We would blame terrorists. We would declare war on the guilty party and innocent countries. Finally, we would mourn the loss of so many opportunities for national advancement.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with six million American people, and as a community, we’ve done nothing.
We’ve let people be silenced, disenfranchised, and murdered.
No more. Today is the time to rise up and take our futures back from those who claim we have none. It is time to work together in a concerted effort to shut down the organisation that claims to want to help Autistic people speak even as it silences any and all criticism from us. It is time to shut down Autism $peaks.
Don’t we and our families deserve it? America has always been about its great people.
Yet we seem to be forgotten in the debate about a genocidal ‘cure’ – even though we have often led others into the future.
Each day across this country, six million moms, dads, and others who live with Autistic people wake to the sound of Junior stacking cans, Jack playing video games, or Mom typing her latest bestseller, and they smile. Do you get that, Autism $peaks? People smile knowing that their loved ones are happy doing what they do best.
These families are living better lives than you envisage for them.
Autism $peaks says that these people are only existing and dare not call their time their own, but they are not the hopeless, helpless victims of their loved ones’ neurology that the organisation so clearly wants them to be.
This is Autism.
Life is lived in the moment, enjoyed to the full, and people’s worlds are not a series of never ending meltdowns.
This is Autism.
Parents and guardians smile at their child’s joy in discovering communication through PECS, AAC, sign, and speech. They laugh to share their child’s pleasure as they dance with a long ribbon, the Autistic person intently watching it as it streams around them. They marvel at the astonishing imagination of their child as they draw complex fantasy worlds entirely from their heads.
This is Autism.
On the bad days, all the family members out there – 420 million around the world – feed into the lies of Autism $peaks because their loved one is melting down after reading about a parent, often female, who has been encouraged to murder their child by an Autism $peaks PSA. On the good days, of which there are so many, they feel the joy and contentment that is their right, and are able to ignore the poison spewed onto YouTube and other places by Autism $peaks.
This is Autism.
If any of this sounds familiar, you know Autism $peaks. And if you know Autism $peaks, you know we are looking at a monumental population and information crisis. And we have no international plan.
What I described above is really just the beginning. In the next ten years, up to a million Autistic Americans will lose their lives at the hands of those they are supposed to be able to trust, and those who kill them will be met with sympathy and face no charges as if we are not also human beings. Up to ten million Americans face the misapplication of ABA in their own homes and places like the Judge Rotenberg Center.
But what about sympathy for the human beings who died just because they had a different neurology? Why no jail time for those who choose to kill rather than giving their child to people who actually care? Why no condemnation for the organisation that actively encourages these murders by calling us ‘burdens’ and ‘financial nightmares’? And why is the torture of vulnerable people ignored and condoned when the waterboarding of suspected terrorists was rightly vilified in the international press?
There is no plan to build a city for a million people so we can be guaranteed our safety.
So let’s dial back a minute and consider the people being diagnosed as Autistic every day in this great country. Do we have a plan for them? Are they all being treated with dignity and compassion? Are we doing anything to guarantee they get a fair shot at a safe and secure future?
We know that children from minority and lower income families are not getting diagnosed as early as they could be, so their castigation begins later, which might increase their chance of a hopeful and successful life.
How about in school? Why should there be a national curriculum which underserves those who struggle with language? Why are we encouraging teachers around the country to share lesson plans and methods that work only with people of certain neurologies? Could it be because of Autism $peaks’ corruption?
But – there is no international plan.
And – our futures depend on it.
According to Autism $peaks, it costs $2.3 million dollars to care for one Autistic person for their lifetime, and they say it will be well over $137 billion dollars for all of us.
But that is because that is all we are to them; not people with varying levels of ability, only costs to be considered. They are very careful never to say what the real cost is to someone who raises money for them in the faint hope of receiving help for their child, help that is unlikely to be beneficial even if it is given.
What is our plan?
We can’t even craft one – without collaboration.
Close your eyes and think about an America where six million Americans and counting are told they cannot take care of themselves without help, even when they can. Imagine six million of our own – unable to dress or eat independently, unable to use the toilet on their own, unable to cross the street, unable to judge danger or the temperature for themselves, unable to pick up the phone and call a friend because their parents and guardians have been brainwashed into believing that they will never achieve these goals when all that is required is the right support at the right time, just like for non-Autistic people.
This is an international emergency. We need an international action plan – NOW.
I am posting this as a call for action on an international plan – NOW. I am asking the Autistic Community to respond to the threat of Autism $peaks with all the urgency it deserves – NOW.
Autism $peaks – here we come – because we have an equal right to life – NOW.
Suzanne Wright and her husband Bob co-founded Autism $peaks in 2005, and they have been ripping off their donors ever since by massively underdelivering the services they were set up to provide.
Copyright © 2014 Romersa’s Protégé. Individuals and groups are free to copy and share this work for all purposes except large scale distribution, subject to credit being given and any derivatives being released under the same or a similar licence. All other rights reserved.
Adapted without permission from an Autism Speaks blogpost under an exception for the purposes of criticism and review enshrined in the CDPA 1988.
Oh my god. This made me cry. This is wonderful.
Every time a friend or extended family member would link me to a page from Autism Speaks upon hearing about my atypicality, I’d look it up and feel actually, physically nauseous. It’s disgusting. Autism doesn’t speak, really. Autism generally has trouble speaking. Autism listens and watches and notices and only speaks if you are /really really /really// threatening those with it. This article really made me realize that other people go through stuff similar to what I go through very often (also, I was really able to relate to it, because my name’s also Brooke! :> ). Thank you for realizing and helping others to realize that beneath this label, after scraping away the years and layers of stigma and rumor and pseudoscience that we, too, are human. Often, people don’t notice that I’m autistic because I have learned many behaviors that come as instinctive to a neurotypical individual. People often look at things and automatically make assumptions. Everybody does that. When I first had an apple, I thought they were really gross because the iconic red delicious=apple, which meant apple=mealy and too sweet. But apples are now one of my favorite things, because of the variety in flavor and the consistency in texture (but not mealy. just normal, crisp apple feeling)! What I’m trying to say is that you can put a label as wide and generalized on people, but not all fruits are identical (there’s probably a more precise and commonly known metaphor for what i’m trying to get across but yeah). You can compare apples and oranges; they’re both fruit. However, they’re /completely different/ fruits. And people are different. People on the autism spectrum are probably a heck of a lot more diverse than AS’s board members! Ha.
Realize that we are not defective. We run with different programs, under different rules. I was not diagnosed until I was 14. I’m now 17 years old, the future is approaching with terrifying speed, and I don’t want to go out into the world with this label coated in stigma on my everything. But people like you give me hope. Thank you for sharing your experience, and thank you for really noticing and writing and helping to scrape off this stigma.
(postscript: i’m really sorry for the long sentences and weird extended metaphors. a lot of the stuff i try to say gets lost in translation from my head to words. i’ve spent probably an hour on this comment/reply thing because i’m not super good at writing things in ways that make sense to others, particularly people i’ve never met.)
a) it was perfect. b) never apologize here 🙂
Where do I begin? My life and my 2 son’s lives HAVE been turned upside down. Not exclusively because of autism. Mostly because of the lack of resources available when they were diagnosed with Aspergers,18 years ago. A diagnosis only helped to prevent them from being put on the wrong medications. It didn’t help get the services they desperately needed. They were bounced from one day care to another. Shuffled from one school to another. I had no choice but to accept low paying jobs that allowed flexibility to take time off. Time off that I needed to be able to go to their school or day care, usually because of a melt down. Melt downs because the day care or schools were not equipped to handle autistic children properly and only served to exacerbate the behavior.
Where is dad, you might ask? My (ex)husband was ejected from the family. He could not accept that his sons were “defective”. His words, not mine. I discovered that he was emotionally and physically abusing them, while I was at work. What he did not know, I was told by the psychologist, was that he showed all the classic signs of a high functioning adult with Aspergers. I could have and truly wanted to help him but not at the expense of my boys. They are my priority, my life and my love. Not my curse.
You might be interested in the following thing I wrote:
I Am CP
Enjoy!
Autism $peaks is getting bashed left, right and centre. They granted my daughter’s new residence money and when I found that on their website and started tweeting them being connected to my daughter’s kidnapping, they had NYC A$ contact me get the details and take down the grant off their website. A$ will have nothing to do with controversary. Especially if a Autistic person is being mistreated and a mother is fighting for a child. I have made it so the 2 organizations that is holding my daughter and keeping her from contacting me from ever getting another dime from them.
I have to deal with a corrupt group home owner, and I made that known that A$ works with corrupt people without investigating who they give money too. I have not got Jillian back, I have my recordings. I won’t stop until she’s Free to be with her original family she’s known all her life. No charity or corrupt residence is going to keep her from family on my watch to just to keep her money. This isn’t just about my daughter, I know there are others in this place and the parents are blinded or been already taken away and given up.
Can you imagine not even being able to give your adult child money without fear it being stolen? Why should they be secluded and have less a life because the only places A$ wants to grant money is residences in seclusion? That money they are taking from public would be better spent giving families AT HOME CARE.
My kid is 21 we have been around a lot longer than A$ and I have worked with more responsible Autism charities than them in our area with 50 years experience, reputation in the field. We don’t need A$ in our city, really we don’t we already have the best.
Jett
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Your daughter’s response in the car and to that woman’s face are the best things I’ve heard today. Thank you for raising such a wonderful person. 😀
I remember my aunt reading that and one of my cousins seeing it over her shoulder. This cousin is more profoundly Autistic than I am and she asked the same question your son did, to which I answered, “You never make your mummy ill, but Autism $peaks often does.” Now whenever anyone in the house is ill, guess which organisation gets the blame? }:D
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Hey, maybe you could take over Autism Speaks and then it might actually speak for Autistic people. That would be great.
I love this. As an autistic adult I am often invisible; I am not the stereotype that Autism Speaks would have everyone believe. I live on my own and am in college finishing up my bachelors degree with plans to go to graduate school. I am also female. My story, much like the spectrum, is as varied and different as every other Autistics. Autism Speaks seeks to create a world where people like me no longer exist; this hypothetical world would no longer have a silicon valley, particle physicists, etc. In short, brilliant minds would be lost. The world needs all kinds of minds, and not just neurotypical ones. Autism Speaks HAS NOT AND WILL NEVER SPEAK FOR ME.
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I agree that autism includes both challenges and gifts. As an uncle of a wonderful nephew with autism who brings so much sunshine to the family with his gifts and has so much wonderful help with his challenges, maybe a good billboard slogan would be: “Autism: Celebrate the gifts. Assist with the challenges. Love the people.”
I agree that Autism Speaks does a very poor job ‘helping’ those who have autism. What are some organizations that do better? I would like to recommend alternatives.
http://www.thinkingautismguide.com/p/position.html is a good place to start.
As an autistic adult I thank you for being a voice for us. For me and my daughter, and most of all thank you for helping expose the cancerous growth that is Autism Speaks.