Field Notes From an Inbox: Four Years of Autistic-Led Advocacy in Canada

July 31, 2021January 31, 2022 by Shannon Des Roches Rosa

[image: Neurodiversity flag at Toronto City Hall, April 2019. Photo by Anne Lesserknaus.] Anne Borden King twitter.com/againstcures twitter.com/a4aontario a4aontario.com In the summer of 2017, five of us launched an autistic-led advocacy organization in Canada, called Autistics for Autistics (A4A). Our mission was to fight for the rights of autistics to have safe childhoods, communication rights, inclusive schools, trauma-free housing, fair employment, accessible health care and community equality. We centred both children and elders in our work, following the UK model. We took a grassroots approach, eschewing hierarchies in favour of a multifaceted strategy, working to make as much change as we could. What we lacked in funding, resources, and relationships, we’ve made up for in vision and persistence. In one of our first meetings with a Member of Parliament, she told us that our group “should just represent the autistic adults,” and leave the matter of children’s rights to Ontario’s…

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Disability

Challenging Kickstarter’s Support of a “Torture Device”: Interview With Advocate Rory McCarthy

March 4, 2021January 31, 2022 by Shannon Des Roches Rosa

Anne Borden King twitter.com/AgainstCures The NOIT device in use [image: Screen capture from a video, showing the back of a person’s neck with a small buzzing device attached with a gel pack or some such.] The NOIT product was first flagged by Rory McCarthy, an advocate in the ADHD and autistic communities. The device is attached to the base of a child’s neck with glue. It stays attached to the child throughout the day, emitting loud beeps every eight seconds. Its marketers claim that this “Natural Orientation Inducing Tool (NOIT)” is a “tool to create and maintain focused attention.” There is no research or evidence to support this claim. Despite this, NOIT marketers earned nearly $150,000 promoting the product on Kickstarter, even as members of the ADHD and autistic community reached out to Kickstarter, asking it to remove the product from its platform and calling it a torture device. A petition…

Disability

Autistic with Cancer: Six Tips for Navigating the Medical System

July 11, 2020January 31, 2022 by Shannon Des Roches Rosa

Photo © wp paarz | Flickr / Creative Commons [image: Person with white-appearing skin, wearing a disposable exam gown, from shoulders to hips, hands folded, waiting in a medical exam room.] Anne Borden twitter.com/againstcures I’m currently going through breast cancer treatment, and have encountered barriers to accessing accommodations while autistic. Based on my experience, I wrote this article to help autistics and other neurodivergent (ND) folks navigate the medical system. In this article I cover both sensory and communication issues, with strategies that have worked for me and other ND cancer patients I’ve talked to. I’ve also included some scripts. I hope it can be helpful in some way!   Background  There is very little accurate information available to help health providers understand and support autistic communication and sensory experiences. As a result, autistic patients are left to navigate a system that often misunderstands and mistreats us. It’s difficult. In fact,…

Disability

“I think we all need people in our lives who share our identities”: The Power of Autistic Mentorship

March 12, 2020January 31, 2022 by Shannon Des Roches Rosa

Photo courtesy Anne Borden [image: Two white people: A boy with medium-short dark blond hair, and a woman with short dark brown hair, posing for the camera. They are sitting on a wooden bench next to a large bush.] Anne Borden and Raya Shields live in Toronto, where Raya is an autistic mentor to Anne’s son Baxter. Both Anne and Raya are members of Autistics for Autistics (A4A), an autistic self-advocacy organization. In this conversation, they discuss autistic mentorship: what it is, why it’s important, and how we can forge new approaches to autism through autistic-led and directed projects. —- Anne: Raya, how would you describe what you do? Is it autistic mentorship, or what term would you use? Raya: I refer to myself as a mentor and to the work that I do with children and young people as mentorship. I also have my Bachelor of Arts in Child…