So it’s April, which means it’s Autism Awareness/Acceptance month. A month Many of us autistics have come to dread for the proliferation of bad information, inspiration porn, and enrichment of problematic autism charities. We have historically referred to April as Autism Bewareness Month. The realities of a global pandemic had many of us hoping that limits created by COVID-19 would offer us a reprieve from the usual annual drama. This has unfortunately not been the case.
YouTube scientist Mark Rober and talk show host Jimmy Kimmel are hosting a fundraiser (see video above) for autism charity NEXT for AUTISM which they are calling Color the Spectrum. Rober has an autistic son which makes the cause personal to him. Unfortunately, he like many parents of autistic children has fallen into the trap of failing to communicate with the very community that he claims to want to benefit. This is evident from the video where he continuously refers to his son as having autism rather than saying that he is autistic which is the preferred identifier of autistic people (there have been many informal polls and even academic studies confirming this. He also repeatedly refers to his son having “special needs” This is a term that the disability community at large has been fighting to eradicate for years. It is both infantalizing and does not effectively communicate that the needs of disabled people, even when they differ from those of nondisabled people are still needs. They are not special, they are not optional, they are required. I hope moving forward Mark Rober takes the time to engage with autistic people directly.
The other problem with this fundraiser is the recipient charity, NEXT for AUTISM. Rober refers to it as a well respected organization. But well respected by whom? The fundraiser will feature celebrities, YouTube personalities and a who’s who of late night comedy, including Jon Stewart who just happens to be on the board of directors of NEXT for AUTISM. He and many of his late night pals have been doing fundraisers for NEXT for AUTISM for years under the title Night of Too Many Stars, in reference to the many celebrity guests.
The thing is autistic people have been protesting these fundraisers since at least 2017 with slogans like Night of too Few Autistics. There are in fact several legitimate reasons to be sceptical of NEXT for AUTISM and the current backlash against Mark Rober’s Color The Spectrum fundraiser should really come as no surprise.
Rober described NEXT for AUTISM as a charity that supports autistic adults in the transition to work. This appears to be accurate, though the focus seems to be on promoting inclusion at the corporate level with less focus on providing supports to autistic people entering the workforce. None of the testimonials are from autistic people and there is no information on how many autistic people they have helped transition into fulfilling jobs.
In response to this indirect vague initiative, autistic people–who as NEXT for AUTISM will confirm are disproportionately unemployed or underemployed and thus frequently live in poverty–have pushed back and instead demand more direct meaningful aid. Many autistic people are struggling right now and if nothing else #FinanceTheSpectrum is a stark portrait of how many autistic people are living in poverty and don’t have access to the accommodations and services we need. And organizations like NEXT for AUTISM do nothing to alleviate the suffering that poverty and lack of access causes.
As past protests would suggest autistic people are frustrated with the lack of autistic representation at NEXT for AUTISM. The organization is completely run by neurotypicals and it partners with other organizations run by neurotypicals. This has resulted in them championing messaging and treatments that many autistic people consider to be ineffective to outright abusive.
In 2006 NEXT for AUTISM founders Laura and Harry Slatnik participated in a documentary where Harry stated
“We put locks on all the doors leading outside because we didn’t want David possibly going into the pond. But there were times when you hoped he did, because you wouldn’t want him to suffer like this all his life.”
Apparently, the couple were adamant that this horrific admission make it into the final cut of the film.
The film that can no longer be found but a record of this scene remains in the August 2006 issue of Town and Country. Laura Slatkins further clarifies in the article why they felt it was important to share this thought publicly
“Since then, we’ve spoken to many families who say, We all share that hidden, dark thought.’”.
This article used to be shared on the NEXT for AUTISM website, though it has been removed. It is not difficult to understand why autistic people who continue to experience stigma and discrimination find it difficult to trust an organization built by people who actively evangelized and normalized such opinions. Particularly while in the 15 years since, they may be embarrassed by their hateful past but they have not moved forward in empowering autistic people to have a say in the running of their organization. Nor have they apologized or condemned their past actions.
NEXT for AUTISM also frequently partners with mega autism charity Autism Speaks. Autism Speaks is an organization that many autistic people and autistic run organizations consider to be a hate group. It has historically spread stigma and prejudice. It also spends a large portion of its budget on researching the causes of autism and seeking a cure.
Cure is a complicated and controversial topic among autistic people. It is commonly considered to be an attempt at eugenics and an eradication of a group of people who see ourselves as neurodiverse and a natural part of human diversity.
After the backlash against Color the Spectrum began NEXT for AUTISM added a statement to their supporters on their website condemning the autistic people who have spoken out against them. They claim that they have never supported eugenics or a cure and never would.
It’s too bad about that Town and Country article, where founder Laura Slatnik responds to a question about finding a cure with
“It would mean the world to have my son back—not ‘back,’ because I never had him”.
This is one of the primary problems with autism cure narratives. It boils down to people wanting a different child than the one they have. It fails to recognize autistic people as full and complete human beings. It is also an ideology that those in charge of NEXT for AUTISM have clearly engaged in regardless of what they are saying now.
They are also being very loose with their claim that they would never support research for a cure by defending their relationship with Autism Speaks. Saying
“Our partnerships with groups such as Autism Speaks have been limited exclusively to that mission. Anyone using these partnerships to draw a line from NEXT to eugenics or anything related to the prevention and cure of Autism is doing an enormous disservice to the people we serve by spreading this gross untruth”
The thing is though, by partnering with Autism Speaks for any reason, NEXT for AUTISM is giving the organization legitimacy. They can’t say “we only support certain programs” because the message they send does not usually come with a “but we condemn the eugenic research carried out by Autism Speaks” disclaimer, because why would they work with an organization that spends a bulk of its money on something they claim not to support?
The collaboration is further problematic because autistic people have been begging people to boycott Autism Speaks for years. Why work with an organization that fundamentally does not have the trust of the people they claim to want to help.
Their ongoing relationship with Autism Speaks is not their only connection to cure and prevention research, though they are trying to hide this more direct connection since the backlash against Color the Spectrum began. NEXT for AUTISM is partnered with The Center for Autism and the Developing Brain at New York-Presbyterian. They fund many of the center’s services. Until as recently as April 19, 2021, the centre’s mission statement included the goal of “conducting research that enhances the understanding of the causes, treatment, and prevention of autism spectrum disorders”.
Working to prevent certain kinds of people from being born is eugenics. Wanting to prevent autistic people from existing requires a failure to see us as full and complete human beings. By the evening of the 19th, the words prevention of autism spectrum disorders had been quietly removed from the mission statement.
It is also important to mention that autistic people aren’t just angry about the connection to Autism Speaks or NEXT for AUTISM’s dubious connections to prevention and cure ideology. We are also opposed to their support for and use of Applied Behaviour Analysis or ABA. For years now autistic people have been fighting against the ubiquity of ABA therapy which for far too many who have experienced it has led to lifelong trauma.
ABA was first conceived of by Ivar Lovaas as away to control the behaviour of autistic people through negative reinforcement. They would be asked to complete a task or cease a particular behaviour and if they failed to comply, they would be punished repeatedly. ABA therapy is also the basis for gay conversion therapy, which is now generally considered torture.
Supporters of ABA like NEXT for AUTISM will say that the process has been changed and no longer looks like the torture Lovaas invented. Though it is troubling that anything whose basis was so dehumanizing was considered salvageable as a treatment for children. Supporters argue that ABA now uses positive reinforcement and more rest periods for the child. However, it cannot be ignored that the tasks children are being asked to do cause them extreme distress. So, they are being rewarded for being able to suppress outward signs of distress. So even “new and improved ABA has serious issues in practice and likely continues to have the risk of lifelong trauma.
That the primary reaction to an autistic child is to force them to change rather than to learn to accommodate that child is a serious disservice to autistic people. So, we will continue to fight against its use. Whether or not practitioners believe they have moved beyond Lovaas and the prejudice and harm he created.
Despite this NEXT for AUTISM speaks out against “the outrageous misinformation” circulating about the Color the Spectrum fundraiser. It is really important to make clear that this so called misinformation is coming from autistic people. Too bad the autistic people are showing up with receipts.
The fact that they fail to engage directly with the fact that their detractors are autistic people and their allies is also telling. It is clear that NEXT for AUTISM doesn’t really care about the concerns and opinions of autistic people. Their statement makes it clear that we are not included in their audience. They are speaking to and valuing the opinions of non autistic people. They don’t care if they have a good reputation with autistic people. Their reputation and money come from having celebrities on their board of directors. Celebrities like Tommy Hilfiger and Jon Stewart who can wrap NEXT for AUTISM in the goodwill they attract simply by being beloved celebrities. This also explains why people like Jimmy Kimmel, John Oliver, Conan O’Brian, and Stephen Colbert have signed on to support and add their attached celebrity goodwill to Color the Spectrum. It isn’t because they have done their own independent research. They are trusting and supporting a colleague. For this reason, it is also difficult for these individuals to consider stepping away from their commitment to Color the Spectrum. It requires listening to an often ignored group of marginalized people and considering that a friend, colleague or former boss might in fact be perpetuating oppression. Being in the privileged group and acknowledging that you might be causing significant harm is extremely difficult. It is made more so by the fact that being involved in a fundraiser for an autism charity probably came with all of the best intentions.
Acknowledging that you ran headlong into participating in harm sucks. But if the quality of life of autistic people is ever going to improve, we need privileged people to take us seriously and believe us over people claiming expertise based on their adjacency to an autistic person. Questioning the power structures of autism charities is necessary for disability justice to move forward.
That is why autistic people are begging the celebrities slated to appear on Color the Spectrum to pull out. So far Rhett and Link of Good Mythical Morning have cancelled their appearance in solidarity with autistic people.
I ask that the other celebrity guests do the same. I also ask that people who are considering donating to Color the Spectrum instead look up the #FinanceTheSpectrum and give directly to one or more of the autistic people who are struggling right now. Through direct giving, you can make a difference in someone’s life today instead of giving it to people who refuse to listen to the people they claim to support.
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