Amplification not Exploitation - Why we’re not fundraising in April
Part of my job is listening. Listening to autistic voices and their caregiver voices. It’s one of the aspects of my job that sometimes provides thought provoking conversation and can influence my perspective. A while back I had a such a conversation.
This autistic individual express how he HATED autism acceptance month. His reason, because it has very little to do with autism acceptance and everything to do with autism/disability non profits fundraising off of Autism Spectrum Disorder. He spoke eloquently about how he experiences significant anxiety throughout the month of April because of the intense focus on autism. He mutes his social media, deletes certain emails without reading them and limits his media consumption during the month of April as self care. I was intrigued. As the founder of this autism non-profit, that certainly was an opinion I hadn’t heard before in my 18+ years of autism advocacy. We had a lengthy conversation and I’m going to try to summarize it as best I can here. He wished that April really focused on autism acceptance and the voices of those who want to share their story. He wished that more organizations allowed autistic individuals to participate in their leadership and programs-for the record, My Autism Ally has 2 members of its Board of Directors that are on the autism spectrum. He wished that people looked at autism not as a disorder- he doesn’t need fixed thank you very much, but as another way of thinking and being. Last, he agreed that there needed to be much more awareness and acceptance about autism, but especially the recognition that autistic children grow up into autistic adults that still need supports, grace and understanding.
I left that conversation, being reminded of the Adam Walton quote “Mild autism doesn’t mean one experiences autism mildly . . . It means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are.” I’ve thought about our conversation many times since. I asked similar questions to others I know on the spectrum and got surprisingly similar answers.
Fast forward to April 1, 2022. As a disability advocate, I follow A LOT of different autism and disability agencies- because it’s my job. I opened my email this morning and found, not one but SIX emails from different organizations - local, state and national that were telling me it was Autism Acceptance Month and all the great things they are doing and how I can donate to continue to make those services happen. Six emails before noon on the first day of April. I then opened Facebook and many of my friends were already commenting on the wonderful organizations that I should give to. All of the sudden the light bulb went off. I got it. The conversation from months ago came flooding back and his words made perfect sense. Then came the realization that I had a decision to make. My Autism Ally could either amplify and advocate or we could exploit autism for our own purpose.
So, we’re not going to ask for money during the month of April. There are 11 other months of the year that we can fundraise. Autism Acceptance Month should be about listening and learning. We are cancelling our Portillo’s fundraiser for this month and rescheduling it for later in the year. There will not be any fundraising links in our April newsletters. There will be no talk about supporting us financially through the whole month of April.
To my friend who originally shared his story with me and all of our autistic loved ones this is our gift to you. I never want to be a part of something that causes you distress or harm. I treasure our conversations and your unique perspective. They help me grow as a person as well as being a better advocate and parent. Thank you for sharing your life experiences with me. Let’s take back autism acceptance month and make it what it’s really supposed to be- amplification about, not the exploitation of - autism.
If you like to hear more, I spoke with with Samantha on our podcast about this in greater detail. You can listen to our discussion here https://www.myautismally.org/podcast/its-about-amplification-not-exploitation