“Autism Everyday” Video transcript.

Video opens to soft music, and various children making a variety of noises of frustration and distress, from crying to babbling, to screaming.

Danson’s Mom: Hey, Danson, Danson!

Jackson’s Dad: If you eat that piece of chicken…

Christian’s Mom: No hair pulling.

Music changes to soft, somber music as the title flashes on screen, “Autism Every Day.”

Jackson’s Mom: You can’t really take a day off autism. Autism never took a day off on me.

Alison Singer: In a lot of ways, she’s like a baby. She’s just big and she needs constant attention.

Jodie: Are you crying?

Alison Singer: She can’t be left alone for a minute. She always has to have my attention, and it’s exhausting.

Jackson’s Mom: In one year, we had three kids that were diagnosed with spectrum disorders.

Alison Singer: He used to take his clothes off a lot, and we’re working on that.

Christian’s Mom: He doesn’t speak much at all. (Christian humming in the background) Hey, hi.

Jackson’s Mom: He has never spoken a single word.

Daniel’s Mom: Everything about Daniel’s life that seems normal for a typical kid, like going out to dinner, or going out to a park, all that, for us, is work.

Jackson’s Mom (while brushing Jackson’s teeth with electric toothbrush): Oh, good. A little bit more, I’m almost done. (Jackson screaming)

Alison Singer: It’s impossible for me to talk on the phone at home.

Daniel’s Mom: Take your plate and bring it to the kitchen.

Christian’s Mom: I so hope that I won’t be changing diapers when he’s six and a half.

Daniel’s Mom: I didn’t choose to do this, and I’m not a therapist. I was drafted; I have an autistic child.

Jackson’s Mom: Everything I do is about autism. (Jackson whimpering)

Do you wanna do the alphabet or the numbers?

Christian’s Mom: Do you wanna go up, up? Okay. I have to stay home with him because I have to facilitate the therapists, going here, going there, going there, the medication, the constant medical appointments.

Jackson’s Mom: I really had to give up my entire life as I knew it.

Daniel’s Mom: Well, I left the job that I never intended to leave.

Jackson’s Mom: And I did have to quit my job.

Alison Singer: Our entire social life revolves around autism, and all of our friends are parents of children with autism.

Daniel’s Mom: The parents of autistic children often stick together, and we have to.

Alison Singer: Because they understand, if your kid is having a meltdown, and there’s no judgment. It’s just, that is how it is.

Jackson’s Mom: You know, it’s very hard to maintain friendships with people that have no idea, like just how difficult, you know, life is on a day to day basis.

Christian’s Mom: They have no idea how easy it is compared to this. You know, your heart is breaking all day long. You know, you think about his future, and all the pain he’s in, and I don’t think they can understand that.

Jackson’s Mom: And the parents who are going out for bagels together and are like, “Oh, do you wanna come for a bagel?” and I think, yes, in another life, I’d love to come for a bagel, but right now, I have to write down what he’s doing, so we can go home and work on that. And then I have to take the other two to therapy, so no, I can’t go for a bagel.

Danson’s Mom: Danson ran out the door himself, which was absolutely terrifying. And it was freezing cold, no shirt on, and no shoes on.

Daniel’s Mom: Daniel had walked out the front door.

Christian’s Mom: He got away from me, and he was running down the middle of 1^st Avenue.

Alison Singer: She took off once, and we had to call the police.

Danson’s Mom: I immediately called the police.

Christian’s Mom: I was just running, straight on into traffic.

Daniel’s Mom: Daniel wouldn’t look at traffic.

Danson’s Mom: Running, sprinting down to that traffic light.

Christian’s Mom: He’s gonna get hit by a car.

Danson’s Mom: I really was sure that he would be struck by a car.

Christian’s Mom: People were beeping.

Danson’s Mom: My heart was racing.

Christian’s Mom: And I felt my life going in slow motion.

Danson’s Mom: Anything could’ve happened.

Christian’s Mom: It’s very scary. It’s very, very scary.

Daniel’s Mom: I feel like I’m playing this game, which is life or death to me.

Daniel’s Mom: Can’t you just keep your child quiet? (Daniel vocalizing in background) No.

Alison Singer: People have no idea what it’s like to have a child with autism.

Christian’s Mom: Pah, paci? He’s too old for that, he shouldn’t be having that. We’re just judged more harshly and more constantly, and expected to do things that no human being should be expected to do.

Alison Singer: Why is she screaming?

Daniel’s Mom: Why is he hitting himself?

Alison Singer: What are you doing to her? Why are you making her cry?

Christian’s Mom: And I say, well, you know, are you an expert in autism?

Alison Singer: It’s always heartbreaking. When Jodie was on the swings and crying, the other moms are sort of looking and wondering why this 8 and ½ year old was screaming and carrying on, because she didnt wanna get on a swing.

Daniel’s Mom: I would like people to second guess themselves when they look at me, and they think A, I can’t control my kid, or B, I’m abusing my child because he’s screaming. (Daniel grunting) Have a little bit more understanding, and a little bit more compassion and show that to your children, as well.

Danson’s Mom: Now I’m an educator, and I have a child that I have no idea how to teach. Okay, come on in your seat. This morning, I wanted Danson to sit with me and do a puzzle. (Danson screaming) Put that in the puzzle? (Danson babbling) He could care less, you know? When he feels like doing it, he will sit there, and do that whole puzzle in 30 seconds or he won’t. (Danson screaming)

Alison Singer: And I was a grown woman, afraid of the phone ringing, because it was the school principal, calling me, saying she had bitten someone, or she had kicked a kid, or she had hit a teacher.

Daniel’s Mom: And that’s why they have special ed classes, and they don’t want Daniel to be disruptive, they don’t want, a lot of times, for their kids to have to deal with them.

Christian’s Mom: And when he turns 5, I wish so much that he could go to kindergarten here.

Jackson’s Mom: He can’t go to kindergarten. You know, my school district doesn’t have, they don’t have anything appropriate for him.

Alison Singer: There are parents—

Jodie: What are you doing, Mom?

Alison Singer: Who are forced to put their kids in schools that are completely overcrowed, 12 kids and one teacher, and the kids don’t make progress, but I remember, that was a very scary moment for me, when I realized I had sat in the car for about 15 minutes, and actually contemplated putting Jodie in the car, driving off the George Washington Bridge, and that that would be preferable to having to put her in one of these schools. And it’s only because of Lauren, the fact that I have another child, that I probably didn’t do it.

Christian’s Mom: See you later.

Woman: Let me take little Mattias off your hands. I love you.

Christian’s Mom: Say bye-bye. Mattias was four years old when Christian was diagnosed. It just took a lot of the naturalness, the joy of having a baby out of the equation, because we were always filled with fear. Bye, bye.

Alison Singer: And I have Lauren, whose babyhood I missed, because she was two months old when Jodie was diagnosed.

Lauren: I see Pooh Bear’s house. What do you see, Jodie?

Alison Singer: And so, the first two years of Lauren’s life are a complete blur.

Christian’s Mom: He wants to fix Christian, and he makes a big show about examining people.

Lauren: I don’t want anybody to make fun of her.

Christian’s Mom: It’s sad. I forget, soemtimes, that he lost Christian, too.

Lauren: I wish I had a sister without autism.

Jackson’s Mom: When you have a child with autism, I think the rate for divorce is like 80%.

Danson’s Mom: Having a child who needs what Danson needs made it really difficult for me to balance my life, and be a mother, and have a job, and be a wife. I didn’t that marriage what I could’ve, ’cause I had nothing left to give.

Alison Singer: We never have any time to be together. It’s always one of us with Jodie.

Danson’s Mom: It was just an angry time, where we, I think both felt so helpless and did not know what to do and really sort of turned on each other.

Christian’s Mom: It’s very hard to manage the emotional issues, the financial issues are huge.

Jackson’s Mom: We had to borrow money from my parents, we had to borrow money from my sister, so that we could create this environment for the kids, but all the money in the world, the $50,000 that we’re in debt, is all about the autism. (Jackson crying)

Daniel’s Mom: What I spend on the medical activities that the insurance companies are not paying for, it’s a large number.

Jackson’s Mom: We had a big leak in the living room that was coming down like a bucket. It’s been over two years, and those holes are still there, because we don’t have any money to fix that.

Daniel’s Mom: We keep saying that we’re just sending, you know, Daniel to Harvard over and over again, (laughing) every year for the rest of his life.

Jackson’s Mom: We just keep taking out loans to pay the bills, and we pay for special food and extra therapies all out of loans. So you just keep borrowing and you just keep trying, and you just keep being disappointed, and you just keep going broke.

Danson’s Mom: Danson goes through phases where he doesn’t sleep for like two or three weeks, and you’re up all night.

Christian’s Mom: It’s like you have a hangover the next day, but you didn’t have any fun the night before.

Danson’s Mom: The only solace he will find is if we’re driving around. So I have literally driven around in the car the whole night long.

Christian’s Mom: You wake up in like a frat house, like I wake up here, sleeping on the couch, I’m in my other son’s room, I’m there, Christian’s sleeping sideways across our bed, I mean, we just pass out.

Danson’s Mom: It occurs to me that this is insane, like my life is completely insane at this moment.

Daniel’s Mom: I have to live forever. Nothing can happen to me.

Jackson’s Mom: I can never die.

Daniel’s Mom: I don’t think there’s a day that doesn’t go by where I don’t think about oh, what happens when I’m not here? Who’s gonna take care of Daniel?

Jackson’s Mom: I’m panicking, because I didn’t write an updated list of what to do, in case something happens to me. I’ve gotta write who’s in charge of his program, what doctors he goes to, what vitamins and supplements he needs and what the plan is, because it’s all up to me.

Daniel’s Mom: You first get diagnosed, and you say to yourself, I’m gonna do a year of really hard work, and he’s gonna be fine, he’s gonna be better. And tehn, the year comes by, and you’re like, okay, maybe like two years. And tehn maybe like three years, and then you realize, okay, so basically, this is lifelong.

(somber music)
(Daniel grunting)

Danson’s Mom: I imagined Little League and trips and vacations and girlfriends, and it’s taken me a very long time to let those dreams go.

Christian’s Mom: Christian’s a human being who’s fighting so hard, like you can’t believe. And what’s been taken from him is, (crying) it’s indescribable.

Jackson’s Mom: Jackson is never gonna get married, and never gonna have kids. When I’m at somebody else’s wedding, and they’re dancing with their mother, what I would do to dance with Jackson.

Daniel’s Mom: He is trying so hard to stay in himself, and I’m trying so hard to pull him out all the time. Look up, let me see your face. Okay.

Christian’s Mom: I think that they have this misconception that all our kids are just mentally retarded, and that’s it, and what can you do, what can be done? And we wanna change that.

Alison Singer: I know that science is making great breakthroughs, and my hope is that by the time Lauren’s ready to have a baby, we’ll have a cure or we’ll understand how to prevent autism.

Daniel’s Mom: I’m never going to say, you know, I quit. It’s not really in my vocabulary, as I assume it’s not in a lot of autistic parents’ vocabulary.

Christian’s Mom: I just cannot accept that you have to throw away this generation of children. No way.

Jackson’s Mom: If you don’t think positively, you won’t make it through the day.

Danson’s Mom: Danson is my greatest teacher, and I know that, and he teaches me something every single day.

Jackson’s Mom: When I see him do something that we’ve worked so hard on, and he’s worked so hard on, it gives me hope that he’ll get there. It’s just gonna take a long time.

Christian’s Mom: He’s very, very loving to me.

Alison Singer: Say, I love you, Mommy.

Jodie: I love you, Mommy, I love you.

Alison Singer: I’ll take that, I’ll take that.

It doesn’t seem like it’s even possible that it’s been a nearly 7 years since I penned my first Autism Speaks masterpost. At the time, I was hanging out mostly on Tumblr and in Facebook groups, and I’d received several messages asking me why I wasn’t a fan of Autism Speaks. That was an easy enough question for me to answer, but after I had answered it for the 20^th time in a row, I considered that maybe creating a resource would be a good plan.

Two years later, I expanded the resource, and made another Autism Speaks masterpost.

Now, nearly 7 years later, I’ve gone through those resources, taken out some things that are no longer relevant, added some information that wasn’t available when I first created these resources, or is no longer available. Ah, DoNotLink, I miss you.

There are many, many Autism Speaks blog posts and resources out there. I don’t create this to replace any of those. The reason this exists is so that I could correct some misinformation that exists in my older posts (because it’s now outdated and incorrect). In addition, I’ve tried to make the information more accessible. I’ve added image descriptions where they were missing, and I’ve tried my best to pare down and simplify my language as best a I can. I have also provided links to transcripts in places where videos aren’t captioned or are using YouTube’s autocaptions.

Additionally, I’ve removed a couple of resources that, though they may be good information, stemmed from people who were racist, misogynistic, antisemitic and the like. I’ve also provided commentary alongside other resources in order to show how things have or have not changed. I have tried my best to vet the sources I have provided here. I hope you will find this resource useful.

If you were to ask a group of people, “Name a charity whose focus is on autism,” nine times out of 10, I guarantee you the answer is going to be Autism Speaks, at least if you’re talking to folks in the United States. Between large corporate sponsorships and celebrity endorsements, they are easily the most recognizable organization in the United States when it comes to autism awareness. They are also often the first resource provided for parents of newly diagnosed autistic children, or to parents of children suspected to be autistic. That would be fantastic if they were a good resource. They are not. They promote a culture of fear around autism, and while there have been improvements, it’s quite a bit of talk without much action.

Disability advocacy’s rallying cry has been, and continues to be “Nothing about us without us.” Years ago, when I first wrote about Autism Speaks, I critiqued their status as the number one autism-related resource in the United States that had not a single autistic person in the highest positions of leadership on their Board of Directors.

I mentioned, of course, the fact that John Elder Robison had once been a member of their Science Advisory Board. I linked to this article, which details Robison’s decision to step down. Additionally, once I learned that Autism Speaks had decided to appoint two new members to its Board of Directors, Dr. Stephen Shore and Valerie Paradiz, I made an edit to my post to include this information. Link here.

I remained cautious when Dr. Stephen Shore and Valerie Paradiz were appointed to the Board of Directors, because I knew that even if they succeeded against the very loud voices of the non-autistic leadership, it would be, at best, an uphill battle. The reason for this is that there were 35 people on the Board of Directors, including the founders, Bob and Suzanne Wright. In addition to the fact that Shore and Paradiz were enormously outnumbered by presumably non-autistic board members, neither of them held a position on the Executive Committee within the Board of Directors, or even as a Staff Officer. You can read the full list and the individual roles of the Board of Directors on page 18 of the 2015 Annual Report, which you can access here.

Among their fellow board members was Sallie Bernard, who founded a chapter of Cure Autism Now, and who also co-founded SafeMinds, an organization whose goals include “Autism is a national health crisis,” and “Autism is environmentally induced.” Link here. In short, it is an anti-science and anti-vaccination organization that instead of accepting autistic people as we are, and finding out what supports work for autistic people, would rather work towards finding a cure for us in order that we won’t exist in the future. She is no longer a board member of Autism Speaks, having stepped down in December 2016.

Other members of the board at the time included Holly Robinson Peete, Tommy Hilfiger, and a slew of folks in the entertainment and financial industries, including such companies as Staples, FX Networks, Goldman Sachs, Fox Sports and others. Now this is not to question their objectives in the least, but when you place people with a lot of power and equity against an assistant professor (Shore) and a business owner (Paradiz), there’s some inequity to be had there. That doesn’t even address the fact that 2 autistic board members out of 35 is a mere 5%. That’s poor representation, no matter which way you look at it.

Autism Speaks was founded in 2005 by Bob and Suzanne Wright, a year after their grandchild was diagnosed with autism. In 2006, it merged with the National Alliance for Autism Research, and in 2007, it merged with Cure Autism Now, an organization focused on the prevention and cure of autism.

Autism Speaks has been instrumental in pushing the narrative of autistic people being something to be changed and cured. Instead of focusing on how to accommodate us as human beings, Autism Speaks has repeatedly showcased our lives (and the lives of our caretakers) as difficult, inhuman, and broken. They even launched a campaign with Google called The Ten Thousand Genome Project (AUT10K) and used their ad campaign called MSSNG to imply that there’s something missing in autistic people, when we know this is not the case at all.

They also ran a set of fear-mongering ads in a campaign called “Maybe” back in 2013, showing autistic children exhibiting perfectly normal autistic behavior such as lack of eye contact, interest in objects, etc. as a reason for early assessment of autism. Links here and here. (Transcript to come). Then there’s this ad, called “Close to Home,” which is supposed to indicate that the rate of autism is increasing, and we should be afraid of that, I suppose? Except it’s not actually an epidemic, and there is a similar rate of autistic adults as there are autistic children. We’re, as a society, getting better at identifying autistic people (though we still have much work to do). Link here.

Autism Speaks is also highly associated with the Light It Up Blue initiative, which is intended to raise awareness of autism in support of World Autism Day (April 2nd of every year), and Autism Awareness Month in the United States (the month of April). All around the world, the buildings of major cities light their buildings up blue for “autism awareness.” Link here. Autism Speaks tried (and failed) to get President Obama to light the White House up blue for World Autism Day. Donald Trump fulfilled a promise to Suzanne Wright that he would light up the White House blue, in 2017. Link here.

Originally, Autism Speak’s mission statement was quite grim. This has since been highly edited and deleted from their website, but at one time, Suzanne Wright, co-founder of Autism Speaks, had this to say.

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Thankfully, in 2016, Autism Speaks took the approach of removing the “cure” language from their mission statement. It now reads:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow

https://www.autismspeaks.org/about-us

It’s great that they’ve removed the word cure from their mission statement. However, that doesn’t erase what they have said is their goal for the next 10 years.

Building upon the legacy of three leading autism organizations, Autism Coalition for Research and Education (ACRE), the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), who merged with the organization, Autism Speaks has made extraordinary advancements in the autism community. 

Chief among these are increased global awareness of autism, better understanding of the breadth of the autism spectrum, and advocacy to increase research and access to care and support.

Today, Autism Speaks is dedicated to advancing research into causes and better treatments for autism spectrum disorders and related conditions both through direct funding and collaboration.

To accomplish this, Autism Speaks will relentlessly pursue strategies that make significant progress toward the following outcomes over the next 10 years:

• A better understanding of the causes and typology of ASD
• Children with an autism spectrum disorder being diagnosed before the age of 2
• Children having access to appropriate intervention, services and resources immediately following diagnosis
• The availability of better treatments both for underlying pathology as well as co-existing conditions that decrease quality of life for those with autism
• People with ASD and their families have transition plans that result in more independent adult life that is meaningful to the individual
• Individuals with ASD will have effective interventions, services and supports throughout their lifetime

Those all sound like great goals. The problem is that though they’ve taken the word “cure” out of their statements, what they haven’t done is taken the concept of finding a cause or reason why autism exists out. Additionally, they merged back in 2007 with Cure Autism Now, so they’ve not done anything but try to rhetorically distance themselves from their past actions. More information here.

It’s quite telling that Autism Speaks isn’t apologizing or making amends for their past misdeeds, but just hoping that they can move past them. Some of these past misdeeds include the following.

• Producing the short film “I Am Autism” with Alfonso Cuaron as director. You can find more information about this film (and a transcript) here. The entirety of the video features a disembodied voice saying things like, “I am autism… I know where you live… I will make sure your marriage fails,” citing an outdated and now-disproved statistic that 80% of marriages end in divorce when a child is autistic.
• Producing another short called “Autism Everyday”, which features Alison Singer, former Autism Speaks board member and founder of the Autism Science Foundation. Singer expresses frustration at having an autistic child. At one point (clip here), she even talks about driving herself and her daughter off the George Washington Bridge. She only decides to not do this because she has another child, this one non-autistic. Link to transcript on my blog here.
• They’ve produced a document called the “100 Day Toolkit”, which a parent is supposed to use to navigate the first 100 days following their child’s autism diagnosis. The idea behind this toolkit is fantastic, as parents of newly diagnosed autistic children do encounter difficulties in knowing what to do next once their child is diagnosed. However, the information contained inside is very stigmatizing, and even encourages parents to grieve their autistic children. More information from ASAN on this here.
• They teamed up with Google for the Ten Thousand Genomes Program (AUT10K). The Autistic Self Advocacy Network has detailed the informed consent and privacy issues that exist with this project here.
• They’ve allied themselves with the Judge Rotenberg Center. This is a facility that utilizes horrific practices on the people they “serve”, including doling out electroshock punishments. This resource is very hard to read, but is necessary for understanding exactly how horrible Autism Speaks’ history is.
• They expressed sadness over the attempted murder of Issy Stapleton by her mother, Kelli Stapleton. They released this statement, which they’ve since deleted from their website. It is, unfortunately, a very neutral statement that does not say anything about Kelli’s culpability. Kelli was later sentenced to 10-22 years. Link here. This is enormously frustrating because of the large number of disabled people killed by their caretakers. It is why the Disability Day of Mourning exists in the first place.
• They allowed a Neo-Nazi group to form a team for one of their fundraising walks. Link here.
• Back in 2013, they held a conference in Washington. Ahead of the conference, Suzanne Wright published a “Call to Action,” using dehumanizing and horrific terminology to refer to autistic people. Link and some commentary here.
• Autism Speaks has taken charge of some legislative issues, which is beyond problematic considering their more problematic points of view. Back in 2014, they blocked the inclusion of the Schakowsky Amendment in the Autism CARES Act.
• They plagiarized/used an autistic adult’s writing without consent. More on that here.
• They rescinded a job offer to a mother of an autistic child because the mother had difficulty initially securing childcare. More here.

Those are all some of the issues that Autism Speaks has had in the past, and has yet to atone for. It’s one thing to take the word “cure” out of your rhetoric, but it’s another thing to actually work for lasting change. I don’t know if it’s possible for Autism Speaks to do so. The history is too mired in controversy and issues, not just with demonizing autistic people, but with aligning with people who commit human rights atrocities (the JRC) and Neo-Nazis. Is it possible to move forward? I’m not sure.

The only positive piece of information I was able to obtain while doing my research is that one thing has changed, and that is the amount of funding that is provided for family services. It used to be the case that only 2-4% was being allocated for family services. Now it’s up to a whopping 16%, if I’ve done my math correctly. Link to most recent financial statement here. It’s a pretty major change, although it’s certainly not enough.

Additionally, it seems as though their Charity Navigator score has jumped from a rating of 2 out of 4 to a rating of 3 out of 4. It’s still not great, and its financial reporting is still scored as a 2 out of 4, but it’s definitely a bit of a change. Autism Speaks hasn’t rated as more than 2 out of 4 since 2013.

Finally, I hope that what you’ll do here is click on all the provided links, and do some of your own research. It’s becoming more and more difficult to avoid supporting Autism Speaks. I will certainly ask that you don’t donate directly, and try to avoid using their resources if at all possible. I’ve presented you with many resources here, but there’s a ton on the internet, including this big Wikipedia link that has just about every post that exists regarding the Autism Speaks controversy.

What I actually want you, dear reader, to do is to make an informed decision about the charities that you support. I want you to listen to autistic people when we present the facts that organizations that claim to be about us many times are more about the almighty dollar (something that continues to be true, in many ways, about Autism Speaks). I want you to seek out resources from autistic adults and from organizations with autistic leadership.

With that said, I present you with a few alternatives.

Autistic Self Advocacy Network, founded in 2007.

Autistic Women & Nonbinary Network.

We Are Like Your Child.

Parenting Autistic Children With Love & Acceptance

A list of organizations that ASAN partners with can be found here.