Last week, Mark Rober posted a video on YouTube. Rober, who has just over 18 million subscribers and is best known for his videos where he glitter bombed people who stole packages off porches, posted a 10-minute video, titled “The Truth About My Son,” about his autistic son.
The primary point of the video comes with the announcement he makes within it; a collaboration with a large number of other YouTubers and famous faces for a fundraiser for a charity called NEXT For Autism. The fundraiser, which is already over 80% of the way to its 1 million dollar goal, is set to culminate in a livestream on April 30 with people like John Oliver, Paul Rudd and MrBeast in attendance.
On the surface, this is a good thing. Charity fundraisers are great and it’s always nice to see YouTubers and other influencers put time and money into supporting something that’s important to them. On the other hand, this is once again a neurotypical person choosing a charity to fundraise for based on their own child which means I was in no way surprised when the news broke very, very quickly that NEXT is shockingly … not a great organization.
This really isn’t a surprise for any autistic person; a concerningly overwhelming quantity of “autism organizations” either actively seek to harm us through loudly supporting ABA or other abuse “therapies” or seek to do so more quietly through impossible efforts to “cure” autism, something which many if not the majority of autistic adults do not want.
The news first broke on Twitter, as autistic advocates shared their findings related to the organization. There are far too many issues with missions and ABA and this organization in general to name all of them succinctly, so to name the most pressing: NEXT funds a research institute which seeks to “cure” autism and massively supports ABA, a practice which the autistic community widely regards as cruel.
On the first charge; NEXT funds the “Center for Autism and the Developing Brain” which lists as one of their goals “conducting research that enhances the understanding of the causes, treatment and prevention of autism spectrum disorders.” It’s hard to be more plain about wanting to “cure” autism, a pointless goal which is actively harmful to autistic people in a multitude of ways because it establishes our lives and who we are as people as this inherently harmful thing that needs to be “cured” in some way to be “normal.” If that sounds familiar, it’s generally the same principle used in things like conversion therapy, which is part of why many people compare ABA to conversion therapy.
Some of the people who were meant to attend the event have responded to these issues; Rhett and Link withdrew from the event, as did Miranda Sings. Streamer Karl Jacobs and YouTuber Jacksucksatlife, have requested the charity be changed and Jacobs has stated that he will not be attending unless that happens.
This helps to illustrate the idea that for at least some of these people, they had no idea that this organization was harmful in these many ways and that isn’t a surprise either. Every harmful autism organization shields itself with the idea that it’s not bad; even after over a decade of reasons as to why Autism Speaks is harmful, they still raise millions of dollars every year because people believe they aren’t. They put on a mask, much like they’re so fond of trying to force autistic children to, and pretend that they’re something other than organizations which promote harmful therapies and bigoted cure efforts over things that would actually benefit the lives of autistic people.
And yet the big names, Mark Hamill, John Oliver, Stephen Colbert and more, have seemingly said nothing. Rober, even after the controversy that has ran all over Twitter this week, seems to have completely ignored the criticism as he kept posting about the event Monday night. And while I can understand that being hit by a bit of a tsunami of criticism over a charity fundraiser that he genuinely seems to believe in must be frustrating, simply ignoring the concerns of the autistic community is not the way to go.
But it’s also not a surprise. There’s a reason that many autistic advocacy organizations have adopted the slogan “Nothing about us without us”; neurotypical people routinely and repeatedly ignore the life experiences and expertise in being autistic that autistic people have and presume that they can more accurately assess the merits of organizations, laws, therapies and basically anything for autistic people.
I don’t think Mark Rober intended to support a harmful charity. I don’t think anyone who will be participating intended to do so. But when you make that mistake, which is so easy to make when organizations try so hard to appear positive, continuing to stick your head in the mud and ignore the issue is not the way to go. Making that mistake is understandable. Continuing to fundraise rapidly towards a million dollars for an organization which is so profoundly unsupported by the very people it claims to help? That is on the shoulders of those people who would rather stick their heads in the mud than listen.
As an autistic person, it is exhausting watching neurotypical people who really do mean well so consistently and spectacularly fail and do things that cause harm to our communities. So many of these situations could be avoided if the person making the fundraiser put any effort into speaking with autistic advocates, many of whom would be happy to suggest organizations that are legitimately positive. But they don’t. Because, in the head of these people, they as neurotypical people are more legitimately able to determine the worth of an organization than the people that organization is meant to serve.
Thank you Ashton for this thought provoking article! I am a neurotypical mom with an 8 year old son recently diagnosed with ASD. We are currently doing ABA therapy which you referred to as cruel. I would be interested in learning about other kinds of therapy from your perspective. Thank you!
It’s anything, but thought provoking. Instead it’s one that is bought and paid for by gender studies programs that are being funded by a money laundering scheme by the government. Autism Speaks doesn’t even search for a cure so much as launder money. Very little of their money goes to researching autism. I’m autistic and this article doesn’t represent me.
Did you even read the article? It’s not promoting Autism Speaks in the slightest, yet you respond as if it’s helping them “launder money’ somehow.
And what on earth do “gender studies programs” have to do with anything written here?
Hi, if I did want to donate to a non ABA, but pro-autism organization/nonprofit, what would you recommend?
Hi, I’d suggest the Autistic Self Advocacy Network (ASAN). They follow the Nothing About Us Without Us slogan and support therapies and treatments centered around autistic people learning how they are different and how to function in life despite those differences.
ABA sucks because it just makes kids seem more “normal” while they are young, without giving them the tools they need to figure out becoming an adult. Parents will be convinced their child is being cured, when it’s really just a bandaid that WILL fall off eventually.
ABA isn’t evil, it’s not about curing autism, and anyone who thinks that is a special snowflake who either wants their children to be special or wants to be special. I am an autistic individual. I grew up without any therapy or assistance. ABA therapy is something I wish I had. To teach me how to deal with people day to day. I have sons who are autistic, more severe then I am. Without ABA they’re going to need someone to take care of them for the rest of their lives. With ABA they have a chance of learning how to function and operate.
There’s nothing abusive about it either. I’ve sat in on the sessions. I’ve been read in on all of the steps they’re going to take. I’m asked to assist and participate with my fiance in our day to day home life. It’s all about helping the kids deal understand the world around them AND their own responses to it. It teaches that understanding in a variety of different ways. Notably, my kids LOVE going to therapy because the current best method of teaching kids pretty much anything is by making it fun for them.
stop making up fucking stories thats not ABA that would be occupational therapy and they still use prongs to “modify” childrens behaviour
no, this is good! it helps those kids who’s brains are stuck on child mode when they are a teen/adult. I’ve seen it, it’s terrible. (this is coming from an autistic!)
I and my children are all on the spectrum. There are two big problems with this article. First, while one cannot lump all ABA therapies into one category, as an autistic person, i wish i had something like ABA so that i better understood what was expected of me in a public forum and why people were often frustrated with me. I still would have had the choice to choose my behavior, but might’ve better understood what was expected and how to function without always feeling out of step with what was happening around me. Like it or not, we all HAVE to be able to function in the world as it is.
Two, it’s unfortunate that being extremely high functioning on the spectrum so often seems to be somewhat synonymous with a type of narcissism that insists that all people on the spectrum are equally high functioning and living their best lives. There are so many on the much lower functioning end of the spectrum who are struggling and need the help offered by these organizations. Some of us need to get over ourselves.