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

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…

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Are Co-occurring Conditions Part of Autism?

Photo © NASA Goddard Space Flight Center | Flickr / Creative Commons [image: Photo of two neutron stars ripping each other apart.] Maxfield Sparrow unstrangemind.com Sometimes when I’m talking with someone about autism it feels like we’re talking about two different things. For example, I’ve had countless conversations that go something like this: “You’re nothing like my child. My child has the serious kind of autism,” they might open with.  “Autism is serious stuff,” I respond. “It’s important to take it seriously.”  “No, I mean my child has the autism with digestive stuff and physical involvement. The severe autism.”  “I have intermittent gastroparesis that has sent me to the hospital multiple times. I have a connective tissue disorder that has caused pelvic organ prolapse. These things aren’t autism.” And it’s the truth: the co-occurring conditions we cope with are not autism; they are the “genetic hitchhikers” that love to travel…

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When Autistic People Have Epilepsy

Photo © Ivo Dimitrov | Flickr / Creative Commons [image: Illustration of a human brain, in profile, made of colorful cogs in various sizes and shapes.] Maxfield Sparrow unstrangemind.com [Content note: This post discusses suicidality, mental health, and death.] In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure. I can’t know what it is like to have epilepsy or…

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Autism and Psychiatric Medication: Caution Advised

Photo © RoseFireRising | Flickr / Creative Commons [image: Mandala made out of different colored and shaped pills, on a dark blue background.] Kit Mead kpagination.wordpress.com [Note: This post discusses anxiety, medications, and chemical restraints. It is meant to caution against overmedication and about risk factors in medication for autistic people, with the understanding that many autistic people rely on psychiatric medication for their health and well-being.] I would need more than two hands to count the psych meds I’ve been given. There are enough that I don’t remember all of them; it started in the first grade. Some were just regular ADHD meds—which I needed—not psychotropic. As years passed, others were anti-anxiety SSRIs, and then antipsychotics; many well before I’d hit the end of middle school (these include Risperdal, Paxil, and Wellbutrin). While I was not diagnosed autistic until I was 14 or 15, the logic under which these…

When Medication Is the Right Choice

Jennifer Byde Myers www.jennyalice.com Jack is asleep in my bed right now. He wandered in while I was folding clothes; I pulled back the covers and asked if he wanted to snuggle. He’s non-verbal, but he made a happy sound I know to be yes, and from across the room he leapt in, buried his head under the pillows, and fell back asleep as I returned to my unmatched socks. It’s hard to believe that he’s the same boy who as a three-year-old didn’t sleep for 52 days. Fifty-Two days where he didn’t rest longer than twenty-thirty minutes in a row and no more than one to two hours in a 24-hour period. Back then he would scream and thrash the entire time between passing out. It’s an example — the worst one — of what we call “episodes,” what appeared to be pain from unknown source, and it happened…