Thursday, March 4, 2021

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

Anne Borden King
twitter.com/AgainstCures

Screen capture from a video, showing the back of a person's neck  with a small buzzing device attached with a gel pack
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 asking Kickstarter to take down the campaign gained more than 12,000 signatures in five days.

McCarthy researched the device and its claims, finding that NOIT’s makers recommended the product be used on non-speaking autistic children as part of what Rory identified as “a completely unscientific approach for treating autism.” Not only was there no peer-reviewed research on the NOIT, but it breached three rules of Kickstarter’s Prohibited Items Policy, including: “any item claiming to diagnose, cure, treat, or prevent an illness or condition (whether via a device, app, book, nutritional supplement, or other means).”

Rory originated the petition entitled “Stop Kickstarter from allowing child abuse of neurodivergent children.” They also wrote about the NOIT campaign in The Spinoff, concluding “We need people to accept and try and understand us, not to cure us.”

I recently spoke to Rory about the NOIT, Kickstarter, consent and human rights.

Photo of Rory McCarthy, a person with light skin, glasses, short dark hair,  and a trimmed beard and mustache. A chocolate point Siamese cat is on their shoulder.
[image: Photo of Rory McCarthy, a person with light skin, glasses, short dark hair,
and a trimmed beard and mustache. A chocolate point Siamese cat is on their shoulder.


Anne: How did you find out about the NOIT?

Rory: I am in a number of support groups on Facebook for Autism and ADHD. The device was linked in a parental support group where people were saying things like “I need to use this for my child,” “this seems great,” and similar. It was then also posted onto the main adult support group.

Anne: What was your reaction when you read about it?

Rory: I had several reactions. At first I was intrigued and skeptical—maybe this could be an alternative for helping people concentrate. Then I started looking deeper into the device. I watched the promotional videos, and none of them showed them initially putting the device on the child—this set off a lot of red flags for me. 

The position where the device is attached to the child makes it very inaccessible for the children to reach. It's also attached with adhesive. This would be awful from a sensory perspective; just thinking about it makes me uncomfortable. The creator of the Kickstarter campaign turns it off during the video as it's a “little distracting”…which for a device that's supposed to be about focusing attention seems quite concerning. 

Anne: You tweeted about the NOIT. What was the community response to those tweets?

Rory: The first tweet I made was just pure dismay. I tweeted, “How to traumatize yourself or child with ADHD.” I am fairly recent to the advocate community (especially for autism, having only been diagnosed this year but have been active advocating for ADHD since mid-2019). The response was near uniform: Everyone was shocked at the idea that this device would be used on children, and that no evidence appeared to exist besides some testimonies. A very small number of adults—two out of several hundred responses—said they might be willing to try it, but could also see the issues with consent.

Anne: What more have you learned about the NOIT since then? What does the company claim it can do?

Rory: I think the most shocking discovery was that this is already used to treat non-speaking children with autism as part of an approach known as the Davis Method. More shocking was the discovery that this method is practised in my home country—Aotearoa New Zealand. 

The campaigner claimed that it was only put on willing participants, but [ascertaining that] is difficult, especially at a young age. 

The NOIT research website looks like something out of a cult (complete with pyramid iconography) and the “independent research” that they claimed to have was in progress since 2016. There's no peer-reviewed science. It was all witness testimony, and a few anonymous adult testimonials. They claim that the product helps bring attention in line, but as someone with hyperacusis*, this would probably cause me to melt down fast. It would cause significant mental distress. 

Anne: Beth Shier, who ran the Kickstarter campaign, claims that it is “easy to remove”. Can you respond to that claim?

Rory: It uses adhesive to attach the device, from what I can see in the video. The idea that it's easy to remove might be true of having someone else to remove it from you, but you can run a pretty easy self-experiment here and try and reach the part of your neck between the shoulder blades. It's not easily accessible. Depending on the strength of the adhesive also, it could actually cause some pretty bad tissue damage when removing it, especially if done in haste.

Anne: What do you think is the ultimate goal of using devices like this on children? 

Rory: I actually don't need to guess the ultimate goal because it's explicitly stated on their website: “Families of children who have used the NOIT unit have reported the following changes: less repetitive or ritualistic behaviors, less self-injury, improved focus and attention, improved social interaction, and improved language skills.”

What disturbs me greatly here is that they appear to be trying to make children with autism conform to more neurotypical standards. Stimming behaviour actually relieves anxiety for people with autism. It's a coping mechanism that helps to reduce meltdowns and shutdowns. The effects of masking this behavior long term is actually significantly detrimental to people with autism. 

I am living proof unfortunately of the harm of long-term masking. I went through autistic burnout as my autistic behaviour had been masked for so long [that] I didn't even realize I was masking all the time and had been doing so for most of my life. I didn't know what was happening to me last year when going through a “mental health crisis” as I was not diagnosed, my behaviour had no easy explanation and I actually thought I was losing my mind. It's not an experience anyone should have. Then I started to actually realize how significantly terrible conforming can be for neurodivergent people.  

Anne: You started a petition to get NOIT taken off of Kickstarter. It received 12,531 signatures in 5 days. How has Kickstarter responded?

Rory: Their response has been quite awful. At first when we reported it after my first tweet, they denied there was any problem with the Kickstarter campaign, even though it appeared to be a clear violation of three rules. Under their prohibited items policy they say that "Any item claiming to diagnose, cure, treat, or prevent an illness or condition (whether via a device, app, book, nutritional supplement, or other means)" is not allowed. We were outright rejected on this—Kickstarter saying it didn't violate policy. 

Next, some people started to receive emails saying that Kickstarter had taken action, but it might not be visible to the Kickstarter community—however the campaign was still running and accepting donations. The Kickstarter [campaign] then concluded at the agreed date without any obvious action being taken.

I wanted to pursue legal action against them and had been offered assistance from lawyers, but after a media article came out—lawyers said it would be incredibly difficult to prosecute Kickstarter, as there is a lot of ambiguity in the application of law in this area.

Anne: Our community responded strongly and quickly to this product, after your tweets. My hope is that platforms like Kickstarter are beginning to realize they have to come to terms with their own biases…or at least see how condoning this kind of product is bad for their image. 

Do you think a time will come when Kickstarter and other platforms will pre-emptively ban this type of content, because they know the community is watching and will call them out?

Rory: I wish this was the case. Unfortunately, the lived experience of adults with ADHD and autism is still largely discounted. Due to the fact that neurotypical society sees us as deficient or defective, along with widespread misconceptions about how autism presents, we cannot be allowed to form our own opinions. 

Even though we actually know more about ourselves than science has tried to extrapolate, unlearning the things people say about me that don't align with who I know I am has been one of the greatest challenges. I've discovered more about myself through self-advocacy of people with autism than the scientific field has ever correctly hypothesized, and knowing the mechanisms means that I can effectively develop strategies to deal with common negative symptoms that cause us challenges.

Anne: There’s an entire, multi-billion dollar market around autism & ADHD, with “miracle” treatment scams being marketed to parents through many channels, including Kickstarter, GoFundMe, Facebook and other social media. What’s your advice to parents when they come across an ad or promotion for a product like this?

Rory: I think a pretty good starting point should be “What would I think if this was done to me as a child?” If you wouldn't want it for yourself, you shouldn't want it for your more vulnerable child. If a treatment is trying to reduce stimming behaviour, or to make your child more conforming to the current society we have, or framing autism as only a burden and that treatment or “curing” autism is the right approach, you should discount it in all cases. 

Please, think of your children, think of how traumatic certain things must be with sensory sensitivities, with amplified hearing. We need you to accept us, empathize, and try to understand our perspective. 

Change will not happen consensually with forced application—and the long term effects of these approaches have been shown to cause significant trauma or long term psychological issues. Intensive programs are equivalent to conversion therapy. They are not ethical or helpful.

____

*Hyperacusis: Sensitivity to certain frequencies and volume ranges of sound, or a lower than average tolerance for environmental noise. Hyperacusis is common in autistic and other neurodivergent people.