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Why the Autism Community Is Speaking Out Against This Autism Campaign

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On April 16, scientist Mark Rober, who has a popular YouTube channel, launched the campaign “Color the Spectrum.” Rober’s son is autistic, and through his YouTube video “The Truth About my Son,” has been able to raise nearly a million dollars for the organization NEXT for Autism. Rober will also co-host a Color the Spectrum event on YouTube on April 30 with Jimmy Kimmel.

Soon after the “Color of the Spectrum” campaign was announced, it faced backlash from autistic adults critical of the organization NEXT for Autism, as well as some of the language Rober used to describe his son. In his video, Rober describes his son as having “special needs” and only using person-first language (saying “person with autism” instead of “autistic person“) — two phrases that while common in the parenting space, receive frequent pushback from adults with disabilities.

Critics also noted that NEXT for Autism does not have any openly autistic people on its team or board of directors, but does employ people who have done applied behavior analysis (ABA) and others who have worked in the ABA industry. ABA therapy has been criticized for its focus on teaching autistic people to mask their symptoms, which can be very harmful for autistic people’s mental health. A 2020 study found a correlation between masking autistic traits and suicidal thoughts and behaviors.

On Twitter, NEXT for Autism responded to what they called the “inaccurate and outrageous accusations being leveled at our organization,” stating:

Eighteen years ago, NEXT for AUTISM was founded with the distinct purpose of providing supports and services for autistic individuals across the country. Our mission has never been the cure or prevention of autism; in fact, NEXT was created to fill a void – at the time, most national autism organizations were focused primarily on biomedical research. As we stated in our “Night of Too Many Stars” benefit shows, NEXT was founded specifically to address the extreme lack of schools and services desperately needed to help people living with autism right now.

You can read the full statement here.

“This event is everything that is wrong with the ‘autism’ community,” Louise Stone, Mighty contributor and co-chair of the Autistic Women’s Alliance, told The Mighty in an email.

A star-studded event to raise $1,000,000 could do so much good for autistic people, either by supporting them directly or by supporting non-profits that are autistic-majority. Instead, this money will go to everything we as autistic people fight against. I don’t know much about NEXT. Looking at their website, I’m sure they have some good programs that have helped autistic people, but their values stand in excluding autistic voices from their leadership, perpetuating abusive therapies, and being dishonest about who and what they support. As the Co-Chair of Autistic Women’s Alliance, a new autistic-lead non-profit, I have seen how difficult it is to fundraise in the autism space and it’s so disheartening to see how everyone suddenly ‘cares’ about autism when celebrities are involved, but clearly still don’t actually care about autistic people. I do think that positive things will come of this. Because of the celebrity involvement, both sides of the story are getting press coverage. This is the most mainstream press coverage I’ve seen that actually exposes our views on things like ABA and cures and that is huge. 

In response to the “Color the Spectrum” campaign, autistic adults have been using the hashtag #FundtheSpectrum on Twitter to highlight how the money raised for “Color the Spectrum” could be used to fund autistic-led organizations. Rober has not responded to criticisms about the “Color the Spectrum” campaign.

To find autism organizations and charities that are often supported by autistic adults, you can visit this website. 

Image via YouTube/Mark Rober

Originally published: April 26, 2021
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