Color the Spectrum, a livestreaming fundraiser event organized by non-autistic people and involving prominent celebrities, is scheduled for Friday, April 30th 2021. The money collected through this fundraiser is set to go to NEXT for Autism, an organization that awards funding to other nonprofit organizations through a grant application process.
What may seem like a positive event on the surface has caused great distress and outcry in the autistic community. This is why:
1. The non-autistic organizers of this event sought no input from the autistic community and present themselves as voices for our community.
This represents and continues to perpetuate a decades-long history of non-autistic people speaking for and over autistic people.
2. Color the Spectrum is set to potentially raise millions of dollars for an organization that has a history of problematic and outright harmful attitudes and actions.
These include support and allocation of funds to Applied Behavior Analysis (ABA) therapy – a harmful form of “therapy” that seeks to change autistic people’s natural behaviors to ones deemed “acceptable” through coercion, manipulation, rewards, and punishments.
In an attempt at harm reduction, many autistic people reached out to the organizers of this event. The only outreach attempt that received a response was that of an autistic person with privileged connections to Mark Rober, a key organizer of the event.
On April 22nd, this autistic person provided Mr. Rober with some basic education and emphasized the urgency and importance of this matter. As a result of this, 3 other autistic people were brought in to virtually meet with Mr. Rober. After this meeting, which the autistic people involved consider constructive, they were asked to provide a list of recommendations for harm reduction. After these recommendations were made on April 25th, several other autistic people were brought in to provide input.
Throughout our attempts to communicate and affect change, NEXT for Autism has never communicated with us directly. The only point of contact with NEXT for Autism throughout our group’s advocacy attempts over the past days was through the aforementioned autistic person (who has requested to remain anonymous).
Given the limitations we were working under, these are the recommendations that were made by 5 of us and received by the CEO of NEXT for Autism:
1. From the proceeds of the Color the Spectrum fundraiser, one million dollars, or one-third of the Color the Spectrum fundraiser proceeds (whichever amount is greater) to be allocated to autistic-led organizations.
a) Create an accessible portal for autistic-led organizations to apply for grants.
b) Have staff available to support autistic people in the application process.
c) Advertise that funds are available specifically for autistic-led organizations.
2. Create a panel of autistic self-advocates to inform the distribution of funds to autistic-led organizations and who will determine criteria for the grant application to ensure that services and funds are best meeting the needs of the target population.
a) Expand the definition of “transition services” to acknowledge that many autistic people do not develop on the same timeline or do not branch into increased independence or career services until later in life or after they have hit a wall of barriers.
3. Retain an independent autistic consultant or organization and fully fund a series of conversations by autistic self-advocates.
This independent consultant or organization must be active within the neurodiversity movement and outside of Next for Autism’s network.
These conversations are important parts of representation that will provide deliberate and thoughtful collaboration within the community and should specifically include representation from intersectional populations (nonspeaking, LGBTQ+, Black, Indigenous, immigrant, low-income, transitioning to adulthood, seniors, intellectually disabled and high support needs, small business owners, college students, etc.).
Autistic advocates will have autonomy over these conversations and the topics to be discussed.
4. We think it is important and necessary for the autistic community to feel that they’ve been heard, and therefore to hear about these efforts from Mark Rober and/or Jimmy Kimmel during the livestream, outlining the efforts outlined above.
At this time, the CEO of Next for Autism has communicated that she is in agreement with most of our recommendations, with clarification needed on No. 3 (see above). We are awaiting an official announcement and hope that they will implement these recommendations.
We urge the entire autistic community, autistic people’s loved ones, anyone who cares about autistic people and anyone who just cares about people in general:
Demand accountability and elevate autistic voices.
We ask that any media organization or journalist who plans on reporting on this issue reaches out to autistic people first and foremost.
NOTHING ABOUT US WITHOUT US.
Autistictic, Autistic Science Person, @mykola, Brandy/TheChronicCouple, crippledscholar, @RoryReckons