ASAN Has Ended Partnership With Sesame Street

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ASPartOfMe
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08 Aug 2019, 4:47 am

Mona Pereth wrote:

ASPartOfMe wrote:

If you look at any discussion involving ABA therapists or parents trained in it they use the expression “tantruming”. The non understanding of the difference between a tantrum and an Autistic meltdown is very bad.

WTF???? Still??? That's unbelievably ignorant. Even Autism Speaks knows the difference between a tantrum and a meltdown.

Keeping it Real - Friendly Vocabulary of ABA

Quote:

Timmy, who tantrums (problematic behavior) to get toys.
teach individuals socially appropriate behaviors by rewarding individuals for engaging in appropriate behavior (e.g., parents will reward Timmy for asking for his toys instead of tantruming).

How to Stop a Tantrum on the Way to a Store Using ABA - Todd A. Ward, PhD, BCBA-D & Leanne Page, M.Ed, BCBA Brett DiNovi, M.A., BCBA

APPLIED BEHAVIOR ANALYSIS (ABA)

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Tantruming – Crying, screaming, whining

How to Handle Autism Temper Tantrums In Children With Autism - Bright Hub Education

Applied Behavioral Strategies

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Why is PJ Tantrumming?
Attention Seeking Tantrums

UNDERSTANDING HOW ABA THERAPY WORKS CAN HELP YOUR CHILD OUT IN MANY WAYS

Quote:

Our therapist had us tracking tantrums and your ABA therapist will likely do the same. How long where they lasting for? How many incidents of property destruction, violence, or self harm occurred? How bad was the destruction, violence or self harm? Suddenly this overwhelming experience becomes a numbers game. You detach from that fear and become a detective, getting to the route of the problem.
“Yes, he/she tantrumed for 20 minutes today, but looking back in the chart we can see they also tantrumed for the same amount on this day last week. Perhaps an incident of property destruction has gone down by one or two times in that last week? Perhaps we can identify something different about that day causing more tantrums?” Each reduced number and dash on the page becomes a little ray of hope.

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magz
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08 Aug 2019, 5:52 am

That's really disturbing.
I'm looking for options to get help for my daughter and I shiver every time when I see sentences like "AS children lack empathy" or "early intense treatment up to 40 hours a day proved successful" on professional sites.
I want to get some accommodations at school for her sensory issues and learn how to efficiently help her with her shutdowns during classes. Instead, I'm bombarded with offers of therapies to "correct" her.

I hoped so much that my child wouldn't need to go through what I had been as an undiagnosed Aspie... but it looks like a diagnosis wouldn't make her life much better.

How long until we will be able to get help instead of being told to stop have problems?

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ASPartOfMe
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08 Aug 2019, 7:38 am

magz wrote:

I feel for you, your child, and all the autistic children that have to deal therapists, teachers, and parents with the attitudes towered autism described above.

I am not in Poland and thus not a good person to give advice. Is their an option to homeschool in Poland? There are alternatives to ABA compliance training. There are people here who know about them and could point you towered resources. That would require a lot sacrifice and you to have the skills to use them. And it will most likely be completely up to you to find, learn, and implement them as I would not expect any help if not scorn or worse. “The system” does not like it if you go against them.

magz
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08 Aug 2019, 8:17 am

It's hard to homeschool here, tons of bureaucracy and you get stares for it unless you have really solid reason to show. Anyway, her teacher is wonderful and willing to provide accommodations but she needs official paperwork for this - and to get the said paperwork, I need to fight with all the "specialists" who see her as a problematic child to fix, not a person who needs help.
The problem is, I suck at paperwork so when I don't get clear directions and I need to defend my stance at every stage, I get lost and overwhelmed, unable to do it

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WallflowerAsparagus
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08 Aug 2019, 8:35 am

As someone who has loved Sesame Street her whole life, this really upsets me. I think it upsets me more now that I have been diagnosed because I feel like Sesame Street is even more friendly to me and other autistic people like me.

Julia was a great idea for a puppet and I'd like to see her reduce stigma in the correct way - NOT with Autism Speaks.

Julia holds a soft place with me.
She was brought out roughly around the same time I realised I was autistic and got diagnosed. She also greatly resembles me when I was about three years of age and fell in love with Sesame Street and got my first Sesame Street toys.

What I fear:
Autism Speaks will ruin Julia and Sesame Street's reputation now for being on the same side as autistic children and adults and the assumptions will get worse.

Three years ago I had no idea what autism was or that I was autistic. Never was educated on the condition and it would appear nobody else around me was either.

Sesame Street has been bringing awareness right into families homes and it damn well needs to continue to be presented right.

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ASPartOfMe
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08 Aug 2019, 10:55 am

It must be noted that I have seen no evidence that the positive muppet representation itself has changed or that there are plans to change her. What changed is that links were added directing parents to an ableist site.

It is concerning that autistic input into her representation is gone.

ASPartOfMe
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09 Aug 2019, 3:50 am

Sesame Street’s autistic muppet, Julia, was a huge success—why some of her creators are now cutting ties

Quote:

Two years ago, Sesame Street began airing episodes featuring its first new muppet in a decade. Her name was Julia, and she was autistic. In order to ensure she acted authentically, Sesame Workshop, the nonprofit responsible for the show, consulted with teams of researchers and advocacy groups. And they got it right. Julia’s portrayal was well received in the autistic community, who saw her as an important piece of cultural representation for autistic children who normally don’t get to see themselves portrayed on screen and a chance to help educate the broader community about autism.

For ASAN, the problem isn’t with the formal call-to-action for early screenings: On average about one in 59 kids in America are diagnosed with autism, a statistic that’s generally regarded as low because more than 65% of parents with kids under the age of 6 don’t do screenings. The issue is with the support materials—a “100 Day Kit” for parents whose children have just been diagnosed—that the campaign has allowed its characters to tacitly endorse. “If you look at the content that they’re promoting, it’s like [Sesame Workshop is] using the language of acceptance as the Trojan horse for these really old tired, stigmatizing, harmful ideas,” says Zoe Gross, ASAN’s director of operations.

As a consultant for Sesame Workshop, ASAN saw the PSA content ahead of time and made it clear that it would sever ties if the resource page for Autism Speaks remained. Jeanette Betancourt, Sesame Workshop’s senior vice president for social impact in the United States, says the group was aware of the potential blowback ahead of time but decided to proceed. Sesame Workshop has no plans to alter the current campaign.

“We said that our scope is not really in support of an individual resource or an individual organization. And that we were collaborating with Autism Speaks and the Ad Council for the messaging and the purpose of the campaign, which was in early screening and early diagnosis,” she says. “We’re always looking at that bigger perspective. We truly value all our partners, including ASAN, and are disappointed, but we understand their perspective, and we respect it.”

“In 2016, we refocused our mission to better serve the community and to reflect what Autism Speaks represents,” says Lisa Goring, the nonprofit’s strategic initiatives and innovation officer. Goring says the toolkit was developed through the group’s own work with researchers and the community it’s intended to serve. “Each person with autism is different and has different strengths as well as different challenges,” she adds. She views the toolkit as a “roadmap” for families “so that they can really make sure that their child with autism can lead their best possible life.”

Autism Speaks and ASAN collaborated on the creation of Julia for a campaign called “See Amazing in All Children,” which created online learning hubs and supplementary resources, in part because both felt that the overall messaging seemed positive and inspiring. (Julia became a full character on Sesame Street after the reception she got in the campaign.) The work was a success: In May 2019, a study in the international peer-reviewed journal Autism found that parents of nonautistic children who engaged with that material showed a “small but significant” increase in knowledge about autism, while the parents of autistic kids reported feeling less daily strain and more competence in their decisions, along with more hope about their kid becoming more involved with others.

ASAN is run entirely by people who are autistic.

The group is also concerned that Autism Speaks cofounder Bob Wright is on Ad Council’s honorary board of directors, which might have led to the shrugging off of their criticism. The Ad Council declined to comment for this story, while Goring emphasizes that Wright had nothing to do with the campaign.

And now ASAN’s departure from the group and Sesame Workshop’s continued support seems to have rankled other early advocates of Julia’s existence, who are sharing their disbelief on Twitter.

Unless something changes, Julia’s subsequent character development will continue without ASAN’s input. “Sesame Street, I think in developing these PSAs, had the idea that they could promote something that went counter to the values of what they said they were trying to achieve with ‘See Amazing’ and it wouldn’t do harm,” says Gross at ASAN. “And of course it will do harm. . . . Like just like when Sesame Street said, ‘Accept your child.’ People took that seriously. When Sesame Street is saying these other things, people are going to take that seriously too. I don’t know why they think they won’t.”

Dvdz
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12 Aug 2019, 4:53 am

On the surface, ASAN's statement seems reasonable, until you actually try to see if there is any merit to their claims.

Quote:

The 100 Day Kit encourages parents to blame family difficulties on their autistic child (“When you find yourself arguing with your spouse… be careful not to get mad at each other when it really is the autism that has you so upset and angry”)

Here is the first claim that doesn't even make sense. They say that the kit encourages parents to blame their autistic child but the quote says "when it really is the autism" and not "when it is the autistic child".

Quote:

and to view autism as a terrible disease from which their child can “get better.”

Now, I downloaded the 100 Day Kit (https://www.autismspeaks.org/tool-kit/100-day-kit-young-children) and searched for the word "disease". "Disease" only shows up when mentioning celiac disease, the U.S. Centers for Disease Control and Prevention (CDC) and when describing psychologists as a "professional who diagnoses and treats diseases of the brain, emotional disturbance and behavior problems". The only people who are calling autism a "terrible disease" are ASAN themselves.

Quote:

It recommends compliance-based “therapies” and pseudoscientific “autism diets,” but fails to educate families about communication supports.

I got no idea what they mean by compliance-based "therapies". I'm assuming they mean ABA. However, ABA is not the only therapy mentioned in the toolkit.

As for the pseudoscientific “autism diets”, the only diet mentioned is the gluten free, casein free diet, which the Kit says to consult with a pediatrician or a nutrition specialist first and only if the child has a response to gluten or casein in the first place.

Regarding communication supports, the Kit has a link to https://www.autismspeaks.org/technology-and-autism.

Quote:

It even instructs parents to go through the five stages of grief after learning that their child is autistic, as they would if the child had died.

In the Kit, the actual text is describing the feelings that parents may feel. Telling people about things that they may feel is a far cry from instructing them to go through something. Here is a quote from the grief section in the Kit:

100 Day Toolkit wrote:

Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on.

Notice that there is nothing about the child dying.

It seems to me that ASAN ended their partnership with Sesame Street, forgoing any future input on the Julia character, for completely frivolous reasons.

ASPartOfMe
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12 Aug 2019, 8:47 am

ASAN and the neurodiversity movement generally sees autism as part of the autistic person or as the autistic person and calls to eliminate the condition as advocating to eliminate autistic people literally or by changing their brain to make people non autistic thus the end result being no autistic people. This has been true since the seminal 1993 ND movement editorial by Jim Sinclair in which he declared

“Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,
what they're really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”

I assume they meant ABA also as Autism Speaks has been a successful and influential advocate for ABA therapies.

Often these days people use politically correct language with all sorts of caveats when they are actually signaling to their target audience they mean something more nefarious. I am assuming ASAN is thinking when Autism Speaks says “may” the hidden meaning is that grieving your child is autistic is and should be perfectly normal. Autistic children often will pick up that they parents are grieving who they are no matter how hard the parents try and hide it. That is what Jim Sinclair was trying to say. This is very harmful, best to not grieve what your child is at all.

ASAN said they tried numerous times to to dissuade Sesame Street from partnering with Autism Speaks before cutting ties.

In conclusion I do believe ASAN cut ties for anything but frivolous reasons because I do think Autism Speaks was signaling to parents that grieving an Autism diagnosis is perfectly normal and I do feel that when they grieve the diagnosis they are grieving consciously or subconsciously the child. That said ASAN taking themselves out is questionable. A decade ago Autism Speaks was full out and openly hostile to who we are. Over the last few years a new CEO has come in as well as the autistic members of their board and the language has become much less hostile to even accepting. For the most part the ND movement has reacted with cynicism, believing these changes were superficial designed to fool people into thinking they had changed to cover up that they are still a anti autistic hate group. In most organizations you have factions that disagree on policy that vie for power. The “moderates” seem to have won out in recent years. It is very possible that ASAN by pulling out had strengthened the hand of a faction that wants to go back to seeing autism as a horrible disease. They can convincingly argue we have compromised at the insistence of the neurodiversity movement and gotten nothing but withering criticism in return. Screw the ungrateful bastards.

Dvdz
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13 Aug 2019, 8:25 am

ASPartOfMe wrote:

I am assuming ASAN is thinking when Autism Speaks says “may” the hidden meaning is that grieving your child is autistic is and should be perfectly normal. Autistic children often will pick up that they parents are grieving who they are no matter how hard the parents try and hide it. That is what Jim Sinclair was trying to say. This is very harmful, best to not grieve what your child is at all.

Jim Sinclair also wrote: "Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real."

Which is what the toolkit wrote as well: "Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on."

ASPartOfMe wrote:

Often these days people use politically correct language with all sorts of caveats when they are actually signaling to their target audience they mean something more nefarious.

With any piece of communication, there is the communicator, and there is the one interpreting the communication. If you are the one interpreting the communication, it is impossible to know for sure what the intentions of the communicator were.

What ASAN is doing here is assuming the worst, that Autism Speaks has nefarious intentions. But if Autism Speaks really wanted to eradicate autistics from the face of the Earth, they sure are going about it in a really weird way by supporting messages like "see amazing in all children".

Again, most of what ASAN stated about the 100 Day Toolkit is factually wrong. The rest, I think, is down to a difference in opinion or ideology.

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13 Aug 2019, 2:08 pm

Dvdz wrote:

ASPartOfMe wrote:

Often these days people use politically correct language with all sorts of caveats when they are actually signaling to their target audience they mean something more nefarious.

I am assuming they are assuming the worst based on what Autism Speaks was 5 and 10 years ago. Of course none of us can truly know their intentions. Assuming the absolute worst intentions that means that means Autism Speaks were forced into quite the elaborate coverup. They replaced their CEO, changed their mission statement to eliminate the goal of curing autism, appointed three autistic board members, use much more acceptance language including from autistic adult bloggers, the Julia muppet project and more. If this is an elaborate coverup it is still a massive victory for the neurodiversity movement.

As far as Sesame Street is concerned I believe their decision had nothing to do with ableism. They were given an ultimatum money talked, ASAN walked.

While recognizing the significant improvements they have made I still have major problems with them. Their support of ABA which is a whole other discussion. Their #MSSNG project, the name I find offensive. I do think an apology is in order for all the horrible things they said about us, their allowing the Judge Rotenburg Center to have a booth at their fair.

What is needed is through journalistic investigation in where the money actually goes and what it is used for.

ASPartOfMe
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17 Aug 2019, 2:57 am

Trouble on Sesame Street by Sara Luterman for Slate

Quote:

Four years ago, Sesame Street introduced Julia, its first new Muppet in 10 years. At first only in an online picture book, and later the show itself, the character, an autistic 4-year-old girl, was shaped by a diverse group of autism advocates and researchers. Julia is sunshine-yellow and never without her beloved rabbit, Fluffster. She has fun with her good friends Elmo and Abby Cadabby, two of the most popular characters on Sesame Street. Julia was even featured on a float in last year’s Macy’s Thanksgiving Day Parade. She was a triumph of representation for people like me.

I am autistic, like Julia. Instead of a childhood full of social rejection and isolation like mine, Julia’s life modeled a better world, until very recently. Julia’s difference is embraced by her friends. People go out of their way to understand and include her. I’m a little embarrassed to admit that the first time I heard “The Amazing Song,” the show’s anthem about autism, I cried. “We all can feel happy, we all can feel mad” doesn’t sound revolutionary, but many still believe that autistic people don’t feel at all.

t was groundbreaking that Sesame Street told stories about an autistic person in consultation with actual autistic people. We are rarely the ones who tell our own stories, and most of the stories other people tell about us are sensational or just downright awful. Ironically, a felt puppet with a traffic-cone-orange nose is one of the most realistic, informed, and positive representations of autism to ever appear on television.

Autism Speaks is behind the 100 Day Kit for Young Children, which describes itself as “a tool designed to help assist families of children recently diagnosed with autism during the critical period following an autism diagnosis.” Autism can require a high degree of specialized support, and many parents don’t adequately learn about their child’s disabilities. The kit includes useful tools for advocating for a child’s inclusive education and keeping appointments organized, for example. The problem is, it also weaves incredibly harmful information with useful information with little to no distinction.

The ads encourage viewers to have their children screened for autism and points to a resource on the Autism Speaks website that declares, “For Julia’s family, early screening made a lifetime of difference.” The first and biggest link on the page is a test called the M-CHAT-R (Modified Checklist for Autism in Toddlers, Revised). It takes about two minutes and can be used to evaluate whether your child is keeping up with developmental milestones. This is relatively harmless—I and many other autistic adults feel that funding, and focus, on early diagnosis is disproportionate to the benefits and excessive, but it’s hardly offensive. What happens if the test comes up positive, though? Then you get a link recommending the Autism Speaks 100 Day Kit for Young Children.

The 100 Day Kit features a persistent narrative that having a child like me or Sesame Street’s Julia is like having a child who has died. The kit even has an entire section outlining how parents may go through the Kübler-Ross stages of grief. Then there are smaller suggestions that children like me are a tragedy: In one parental anecdote, a mother complains about how a kid at her child’s preschool who was diagnosed with leukemia is getting all the attention she deserves, as if having a child with cancer and a child with a developmental disability are at all comparable. For the record: Nobody has ever died of autism.

Elsewhere, the guide suggests a restrictive gluten-free, dairy-free diet for autistic children, which has no scientific support. This is listed alongside medically validated autism interventions like occupational therapy. (In an email, Autism Speaks said, “The 100 Day Kit is not intended to provide medical advice, but rather to provide general information about autism services to the community to help them make informed personal decisions.”)

Autism Speaks, a longtime hotbed of controversy, currently asserts that it is not, in fact, searching for a cure for autism. Much fanfare was made last year when the word cure was removed from its mission statement. Cure research has become increasingly unpopular as neurodiversity, the branch of the disability rights movement pioneered by autistic self-advocates, has become mainstream. The 100 Days Guide for Young Children, on the other hand, says the exact opposite more than a dozen times. “Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism,” the guide announces on its first page. “Great strides have been made and the current state of progress is a far cry from the time when parents were given no hope for their children.”

The way we talk about autism’s impact on families matters. Julia is so refreshing because she is portrayed as a normal child—she plays, she has friends, she has a family. She is different in some ways; she has her difficulty tolerating loud noises, for example. But those differences are embraced by the people around her. The Autism Speaks PSAs promote a message diametrically opposed to the spirit and purpose of the character

Bolding mine

CockneyRebel
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20 Aug 2019, 12:57 pm

That makes me see red, white and black all over. That makes me very angry.

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20 Aug 2019, 1:31 pm

Wow they must be out of their minds ! ! Sesame street can go up in flames for all I care now ...

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28 Aug 2019, 9:10 am

I loved the show when I was little. I wasn’t allowed to watch anything but PBS and my mom didn’t pay attention to what was on, so it was a lot of Sesame Street and graphic nature documentaries for Little SOA.

My five year enjoyed the old episodes from the 70s and 80s, but can’t pay attention to the new ones. I’m not sure who they are making the show for anymore. It’s almost all muppets and the plot lines are hard to follow for kids. Their old social justice stuff was at little kid level-like be kind to everyone, share, it’s okay to be different, etc. The new stuff has too much in it and the small kids have trouble grasping it. It’s almost like a soap opera.

If they scaled the autism storylines back to the way they used to used to present information, the controversial stuff wouldn’t even come into it. Why are they talking about parent grief anyway? Is the show for parents??

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28 Aug 2019, 1:13 pm

d057 wrote:

What are compliance-based therapies? My parents sent me to a summer day camp back in my elementary school days. It used this point system that was basically intended to reward kids for good behavior and punish them for behaviors they deem as "bad." Earning enough points meant you were allowed to go on a field trip at the end of the week. Not earning enough points meant you had to stay and do chores. Is that an example of a "compliance-based therapy?"

From the sounds of it , you might have been subject to a therapy cult , based upon the B.I.T.E. model criteria . Modifying behavior with rewards and punishments falls under behavior control , in relation to thought reform . This would not be the first time that cults have been involved in trying to suppress autistic traits in people . https://leftbrainrightbrain.co.uk/2006/11/07/autism-scientology-and-the-moonies/

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