Mark Rober, Next for Autism, and Why We NEED to Start Listening to Autistic Voices Instead

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You think celebrities would have learned better by now. It feels extra tone-deaf on the heels of the Sia controversy, but here we have YouTuber Mark Rober announcing a star-studded event to raise money for Next for Autism. Mark has an Autistic son, so of course, you think that this must be a great organization that really helps autistic people! Well, if that is what you were thinking, I am so sorry to disappoint, but of course... Next for Autism is yet another organization more focused on harming and eradicating Autistic people than it is on actually helping and supporting the Autistic community. They support harmful Applied Behavioral Analysis (ABA) Therapy and partner with and donate money to Autism Speaks.

Mark’s promo video for the fundraiser (currently trending at #13 on Youtube) is riddled with cringy moments for any of us who are #actuallyautistic. He spewed a slue of insulting limitations about his son’s future, saying, "My son will never be the star of his little league team. He won't be the first person to step foot on Mars, nor will he invent the cure to cancer..." Well, of course, he won’t if he has you for a father pushing all your limiting beliefs on him. Does Mark not realize that some of the most brilliant minds in the world are Autistic? Many individuals at the top of their professions are Autistic (doctors, lawyers, scientists, engineers, and more.) Just because your Autistic son does not perceive the world in the same way you do or communicate in the way you do does not make him any less intelligent or capable, and the assumption that it does is ableist and harmful.

It’s about time that celebrities take a step back and take some serious accountability for the things they choose to do and support. Like it or not, as celebrities, you wield an absurd amount of power. Fans of yours will blindly follow organizations and causes that you back simply because they like you. Being in that position of power comes with responsibility. You need to properly research and vet organizations and events that you choose to support. If not, you may end up investing in abusive therapy or a hateful eugenics program like these celebrities. (For reference: Eugenics is the study of how to arrange reproduction within a human population to increase the occurrence of heritable characteristics regarded as desirable. Think, Hitler!)

So let me ask you: Mark Rober, Jimmy Kimmel, Jon Stewart, Conan O’Brien, Chris Rock, Adam Sandler, Stephen Colbert, John Oliver, Jack Black, Andy Samberg, Paul Rudd, Maya Rudolph, MrBeast, Zach Galifianakis, Mark Hamill, Sarah Silverman, Terry Crews, Marques Brownlee, Rhett & Link, and more….you all support a company that promotes abusive Applied Behavior Analysis Therapy and donates money to companies who focus on research to eradicate Autism? These organizations want to identify genes of Autistics so that mothers will no longer have Autistic babies. Then eventually, you won’t have to deal with any more of us neurodivergents on your neurotypical planet because clearly, our existence is that much of an inconvenience to everyone. That’s called Eugenics, my friends. Eugenics.

Let’s learn a little more about Next for Autism. While they have Autistic “Advisors,” they do not have one Autistic person on their board of directors. What’s wrong with that? Well, how can you have an organization claim to help Autistic people without giving Autistic people a true position and voice? They strongly support Autism Speaks which is widely known as a hate group against Autistics. It wasn’t until 2016 that Autism Speaks finally dropped from their mission that they wanted to cure Autism. They use fear-mongering to make parents of Autistic children think that their children are defective, dangerous, and a burden. Only 1% of Autism Speaks' budget goes towards the “Family Service” grants however they spend 20x as much on fundraising. Next for Autism partners closely with Autism Speaks and donated $170,000 to them in 2018.

In addition to their contributions to Autism Speaks, in 2018, they also donated over $1.1 million to the following organizations that openly support the abusive practice of Applied Behavioral Analysis Therapy: ABILIS, Autism Treatment Center, Community Living Opportunities, ELS for Autism Foundation, Institutional of Educational Achievement, New England Center for Autism, NYC Autism Charter School, Spectrum 360, The Elija School, NY Child Learning Institute, and The Mercy Foundation. Next for Autism openly endorses these abusive practices on their website.

Why is ABA harmful? If you speak to Autistic adults, many of whom have been through this therapy, they will tell you it’s abuse, many of them with lasting PTSD from the trauma. The founder of ABA, O. Ivar Lovaas, used electric shocks to stop children from engaging in obsessive, repetitive behaviors. His goal, to systematically train them with combinations of love and pain in an effort to get them to behave more “normal,” more like non-autistic children. It’s also worth mentioning that Lovaas used these same techniques to pioneer gay conversion therapy, which, like ABA, has also been proven to be deeply harmful to the human psyche. And although fewer ABA therapists use things like electric shock, it is still used and considered important by several institutions.
Even in ABA therapy, where only “positive” reinforcements are used, the therapy is still not helpful for the child because it only attempts to address the child’s behaviors and focuses on forcing them to suppress their natural tendencies to appear more neurotypical, such as encouraging you to suppress your child’s stims (hand flapping, spinning, dancing, leg bouncing, etc.) which are a natural form of self-regulation. What ABA so terribly fails to do is address the needs of the actual child. ABA is not designed to consider your child’s emotions, feelings, wants, or needs, and why would you want that for them? Can’t you see something wrong with a program that systematically wants to shape your child’s behavior to fit some predetermined mold? Or showing them the “right” way to play, as if there is such a thing? How about 40+ hours of therapy a week teaching them to endure stress without ever being able to express emotions in the way that they need to, the way that is natural for them? We communicate differently; we see the world differently; we feel and express emotions differently; it is not wrong; it is not something to be corrected.

“In traditional psychotherapy and/or with typical children, a therapist would not attempt to treat any anxiety-related disorders with ABA, yet it is acceptable to treat the nonverbal Autistic child with ABA. ABA is never prescribed to rid someone of anxiety, but it can, in fact, create more anxiety along with a myriad of other issues previously discussed. The operant conditioning and compliance enforced through ABA does nothing to address these symptoms and the many aspects of Autism in general. This kind of practice is inappropriate, irresponsible, and abusive; furthermore, this approach to treating typical clients would never pass. Psychologists who have designed these ABA interventions and continue to recommend and advocate for these methods have done more than just a disservice to this population. Various other mental health professionals also continue to recommend and promote ABA treatment without any knowledge or consideration of what ABA specialists are actually doing.” (Sandoval-Norton 2019)

This is a problem so much larger than Mark Rober and his band of celebrity promoters enabling fundraising for a harmful organization. The real issue is that no one is listening to Autistic people. Everyone speaking about Autism doesn’t actually know anything about Autism, and that includes the parents of Autistic children. If you are looking for education and resources for you and your Autistic child, you should be using organizations that listen to actual Autistic people. Autistic children do become Autistic adults, and don’t you think that we would be the best people to help vocalize what helps and what harms?

Then there are celebrities trying to “do good” without bothering to do any research or taking the time to communicate with the groups of people they’re claiming to want so badly to help. It’s not enough to slap your name on any charity to help it gain attention. The truth is, every charity isn’t actually helping the groups they claim to be raising money on behalf of. And when you promote ones that does the opposite, there are people out there, like parents of Autistic children, who will assume that this is a trusted organization with good intentions for their child. As celebrities, you must not wield your power lightly. If you truly care about helping marginalized groups of people, HELP marginalized groups of people. And that starts by listening to us.

Join our charity live stream by Autistic People for Autistic People instead on April 30th from 1pm-9pm PST #AutisticNow