Direct Questions to Autism Speaks

Dear Autism Speaks:

As an autistic self-advocate, I appreciate your good-hearted intentions as a powerful voice within our community. I have a problem that only your organization could solve. Since we’re both busy nonprofit organizations, I’ll dispense with flowery language and simply ask:

Why does your organization act like a lightning rod for any other social media posts I create?

Why do so many people automatically dismiss your organizational mission?

How can we help more people find a more peaceful way to address organizational questions about Autism Speaks while maintaining our own sense of autonomy and self-advocacy?

I’ve done some of my own research, and these are some possible reasons our fan base and like-minded advocates shared, in no particular order:

  • Money gained through fundraising lacks sufficient transparency. Reportedly, less than 5% of all money raised actually goes to families living with autism. I have a solution:
    • Recently, we shared how Katie Cuoco helped raise money for autism awareness. May we ask how much of the $35k is earmarked as direct payments to families or (local?) non-profit organizations that directly services families living with autism? Since Autism Speaks is a non-profit organization, all of this information should be available upon request. No, I don’t need to know that the Smith Family at 1343 Cherrywood Lane got $800; more simply, an answer like “30% of $### went to families/organizations supporting autism advocacy in the Greater Manhattan area,” would suffice. Can I ask how much money that a beloved actor helped raise went into administrative fees, like Autism Speaks’ salaries? May I ask how much money, by percentage, your Board of Directors and other administrators take from fundraising for families living with autism?
  • Why don’t you have anyone advising you about autism with a clinical autism diagnosis? John Elder Robinson’s departure left a void that hasn’t been filled. I have a solution:
    • If you are looking for candidates, I toss my hat in the ring; I pledge to take $0.00 salary for this work. I’ll let the internet validate my candidacy in this regard for autism advocacy, from popular culture to being included in a medical journal about effective, insurance-billable, non-medicinal autism treatments.

I think having answers about these questions may help our fans grow to trust what you are doing. Otherwise, possible misrepresentation or rumors will continue to divide our autism community. Will you please provide some personal answers to me, and to our fans living with autism? I am interested to see if your organization will listen and respond to an adult with autism.

Be well,

Dave Kot, creator and script writer for Face Value Comics

P.S. Would you be willing to share Ms. Cuoco’s contact information with me privately? If she has a sincere interest in autism awareness, she may be interested in helping us plan/fundraise for a large initiative for independent living and affordable housing in our local communities for individuals with autism. Thanks in advance!

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