It all started with some tweets.
“I really don’t want to live here anymore… fully funded child torture device. Will no reporters cover this…” @roryreckons tweeted.
Embedded in the tweet was a link to a Kickstarter page for a wearable device called NOIT. In the main picture, you can see a patch and rectangular device plastered onto the back of a child’s neck.
“Kickstarter thinks a device stuck to a Child’s back/neck that continually emits tones (every 8 seconds) to enforce focus and attention that’s supposed to ‘treat’ ADHD and Autism doesn’t violate it’s own guidelines against claiming to treat or cure conditions,” another user, @NDPoet wrote.
In the replies, you can see self-identified members of the autism and ADHD community decry Kickstarter, saying they’d reported the page for violating the platform’s rules against projects that claim to diagnose, cure, treat, or prevent an illness or condition. Also included in the replies were screencaps of Kickstarter’s response, which purported that the device did not violate its terms. Some added hashtags saying the product was #inhumane and not at all based on science. Others related that sort of device would make them “insane” or drive them to become “suicidal, homicidal, or both.” Rightfully, some questioned what an auditory device would have to do with dyslexia, a learning disorder that impacts a person’s ability to read, write, spell, and speak.
Child torture is a serious claim and not one that should be taken lightly. Torturing disabled children is a serious allegation. If Kickstarter were truly hosting a device that could harm children, it’d be unconscionable for the company to not take it down. Yet at the same time, there are several gadgets out there that blur the line between wellness tech and medical devices with scientific studies validating their claims. Most famously, the Apple Watch may detect atrial fibrillation, can notify you of abnormal heart rates, has FDA clearance for its ECG features, and has been used in several clinical research studies for heart health, women’s health, and hearing — but it’s not considered a medical device that can diagnose, treat, or prevent a condition.
Looking at the Kickstarter critically, it’s easy to see why the internet reached for its pitchforks. The device itself looks intimidating. Nowhere is there a link to clinical peer-reviewed research. There’s no slick video showing how the product is meant to be used, just one of Beth Shier, the Kickstarter’s creator and director of NOIT International, sitting at her desk quickly demoing the device. In it, she holds the device up and says, “You all know how the NOIT works.” It’s a sentiment repeated further down on the Kickstarter page. The description itself says the device can be “helpful for anyone who wishes to create and maintain orientation” and especially autistic people and those with ADHD, sensory issues, or dyslexia. It also says those who have used the device reported better focus and improved motor skills, language, reading, and concentration without explaining how a noise-emitting gadget can enable that. You can find two testimonials in the updates section, but anecdotal evidence is not ironclad proof. The FAQ is blank.
It’s completely reasonable for the average person to look at all this and think this is, at the very least, a scam that preys on vulnerable parents seeking to help a child with a developmental or learning disability. But a hastily thrown-together Kickstarter page doesn’t tell the whole story about this device, the people who made it, or why it’s causing such a ruckus.
You can’t tell from the Kickstarter alone whether the NOIT is based on real, viable education methods with ethical protocols. But what if it is? Would that then make this a case of miscommunication and a badly written Kickstarter campaign?
“The idea here is actually not an entirely new one,” said Dr. Gregory Endelman, the executive director of special services at Orange County School of the Arts & California School of the Arts San Gabriel Valley. Endelman leads the school’s special services department, which helps students with learning disabilities. “It is based in part on this idea, very loosely in this idea of metacognition approach. That’s not new in philosophy or psychology. If you can orientate someone more successfully in their thought process, then you can improve attention and productivity and other types of things.”
Endelman went on to explain that auditory and visual stimuli could potentially help maintain a sense of rhythm. So for children with developmental or learning differences, it may help keep them present and give them something to orient themselves to within their environment. According to Endelman, there are devices that special needs educators might use, such as the Time Timer or interactive metronomes, that can help those with special needs better visualise how much time is left for a certain task. For neurotypical folks, Endelman pointed to seatbelt alarms as something that functions in a similar way to bring your attention back to something that needs addressing.
However, Endelman noted that it’s hard to make any conclusions based on the NOIT Kickstarter. Usually, these kinds of devices are paired with some sort of “bridge” that helps a child associate external stimuli with a response. There should be people who are formally trained to help a child make those associations, as well as judge whether that specific tool would be useful for a particular individual. There’s no indication of such a bridge or formal training in the Kickstarter, and alone, the NOIT may not be helpful for some of the conditions it claims to be useful for.
“I would be, personally, professionally, cautious of the claim it could somehow improve dyslexia, which is a language processing disorder,” Endelman said. “I don’t see any direct connection to actually improving reading or the processing abilities required to utilise language.”
But could this device potentially cause harm?
“In and of itself, it doesn’t seem like it’s harmful in an open and obvious way. It’s not like an electric shock or something like that. But what I would say is that potentially with a younger child or a child who is nonverbal, for some people, I’m positive this would be adverse.”
On a Zoom call, Beth Shier didn’t look like someone who would engage in child torture. She just seemed like a sincere person eager to tell her side of the story. When asked about the NOIT Kickstarter, Shier immediately claimed responsibility.
The Kickstarter, Shier said, was never meant to be public — at least, not in the way that it currently is. The Kickstarter was meant to be a place for Davis facilitators — people who are trained in the Ron Davis Autism Foundation’s programs — to pool their money together to keep the NOIT alive. As it turns out, each NOIT device thus far has been made by hand by Ron Davis, the organisation’s elderly founder who also is autistic. This particular campaign was a means to get this device mass-produced.
“Kickstarter was a way to put all the money in one place in a transparent and international way, and then the public got interested in it,” Shier explained. “So it’s definitely been our fault that we have not provided the answers to these questions upfront, because we didn’t foresee the need for the answers.”
According to Shier, the NOIT’s singular purpose is to “help create an orientated state” that allows a person to correctly perceive their environment. While the Kickstarter mentions that it may help people with autism, ADHD, or dyslexia, Shier said it’s actually meant for anyone with trouble focusing. That includes neurotypical people as well.
In response to some of the concerns raised online, Shier said that the device is easily removable and related a story of seeing a child reaching back and flinging one across the room when it became itchy. As for the sound itself, Shier said there are seven different noise levels and that users with the cognitive ability to do so are taught how to turn the device’s noise levels down or off without having to remove it.
However, Shier also readily admitted there isn’t really much science behind the NOIT either. A field trial was done in 2011 and 2012, but there have only been 250 NOIT users over the past 11 years. None of those users, Shier said, has reported harmful effects. Shier also said the device had received FCC certification that the device doesn’t cause harm.
“We don’t have any actual science. That’s one of the goals for the Kickstarter, is to give us enough units and we can get this and give 100 to a recognised research facility at a university and say, ‘Here, can you quantify what we’ve been seeing?’” Ideally, Shier says such research would also be able to identify who NOIT would be ill-suited for.
All this sounds well-intentioned, but as Endelman pointed out, what may work for some people will not for others. This is true in medicine, skincare, meditation, or basically anything that involves individual human bodies and minds. Also, 250 users is an extremely small sample size, especially when you consider that the CDC says 1 in 54 children have been identified with autism spectrum disorder, and 6.1 million children have been diagnosed with ADHD as of 2016. While anecdotally, Shier said there had been only two instances of users deciding they didn’t want to use the NOIT, that’s not definitive proof that NOIT is harmless.
Visceral online reactions like this don’t come out of nowhere. Several people reported the device to Kickstarter and several thousand more have since signed a petition to get NOIT taken off Kickstarter. Clearly, NOIT has struck a nerve.
That nerve appears to be the conflict between those who think autism is something that can be cured and autism self-advocates who believe the focus should be on supporting autistic people to lead fulfilling lives on their terms. At the crux of this are therapies that aim to make them behave in a way that is supposedly socially acceptable.
Applied Behavioural Analysis (ABA) therapy, according to the Autistic Self Advocacy Network (ASAN), is the most common of these types of therapies. The organisation says that ABA therapies use “rewards and punishments to train autistic people to act non-autistic” and may cause actual harm in that pursuit. Given how NOIT is described in its Kickstarter, it’s not a stretch to interpret the noise it emits as a form of negative feedback, a “punishment,” to get the desired outcome. It doesn’t help that a YouTube video of the NOIT specifically states it can be used to reduce the characteristics of non-verbal autism and replace it with “socially acceptable behaviour.”
Shier said that the YouTube video used poor wording and that NOIT is not an ABA therapy device, as it doesn’t target behavioural changes. “The NOIT is simply worn to help the person feel calm and centered. There are no target behaviours, and there are no expectations of changes in behaviour,” Shier explained. “If changes do occur, it’s because the user no longer feels threatened, anxious, or overwhelmed by a stimulus or situation. There are no rewards or removal of rewards for any behaviours.”
Shier also contended that no one at NOIT is seeking to make children conform to a certain type of behaviour and in a video update posted to Kickstarter said that the group doesn’t believe anyone they work with needs to be treated or cured.
“The NOIT is not a form of ABA therapy,” agreed Shannon Des Roches Rosa, senior editor of Thinking Person’s Guide to Autism, a site that provides news and resources from autistic people, professionals, and parents. “But like ABA it is a normalization tool that aims to ‘fix’ autistic kids instead of accommodating them, or learning how they learn best. While the NOIT may not change kids’ behaviours, it is doing so through cattle prod-like conditioning, not actually helping them in any way.”
Des Roches Rosa also said that although NOIT isn’t an ABA device, that doesn’t mean the potential for harm isn’t there.
“Autistic people report depression, anxiety, and PTSD from being subjected to normalization therapies like the NOIT as children, so yes, there is a real risk of harm from this device. The better way to help students with developmental and learning disabilities is to understand how they experience the world, and how they learn, and build from there.”
Another factor muddying the waters is that many autistic children experience sensory sensitivities. Things that may not bother a non-autistic person might be torturous for an autistic person, including things like buzzing fluorescent lights or constrictive clothing.
“My own autistic son would likely throw a NOIT device across a room if anyone tried to use it on him,” Des Roches Rosa said.
At the same time, not every autistic child or person with learning disabilities may find the NOIT irritating. It’s possible that some might actually like the device, as Shier claimed.
What it all boils down to is consent. What if a special needs child, particularly a nonverbal special needs child, can’t consent to a device like NOIT and therefore experiences a negative reaction to it? That’s an ethical quagmire.
“I don’t have a problem with NOIT being used by anyone who can consent to it,” said Des Roches Rosa. “But as it is in part aimed towards children who have not yet had success with communication methods, how is consent supposed to be possible? How can we have faith that NOIT facilitators will respect the ways in which autistic children indicate ‘no’ when so much autism therapy is based on getting kids to comply by any means necessary?”
For what it’s worth, Shier said NOIT instructions state that “if someone other than the actual user is putting the device on, it must be offered and that users must be respected when they tire of it.”
Ideally, she said, a person would use it when they feel it may help, such as in tests or situations they find difficult, with the understanding that it can be removed at any time. However, even with such protocols in place, there stands a chance a child may not be able to properly express consent or that a well-meaning caregiver might misinterpret consent where there is none.
Again, a major problem is that none of this context is easily available online. And even if it were, without independent research and collaborative input from autism advocacy groups, it’s unclear if any of this will allay concerns raised by NOITs critics.
So what, if any, is Kickstarter’s responsibility in all this?
A Kickstarter spokesperson told Gizmodo that the NOIT page did in fact go through a manual review before being approved.
“As written, the project has not violated our rules and we’ve reassessed the project against our rules since receiving reports, as the project is presented as an assistive tool rather than a cure, treatment, or diagnostic tool, or preventative measure. Kickstarter prohibits items that claim to diagnose, cure, treat, or prevent an illness or condition. Health devices that could be subject to FDA regulation are also not allowed.”
NOIT’s critics may be displeased with Kickstarter’s response, but the reality is Kickstarter has the final say in what does or doesn’t violate its rules. It is true that the page does not overtly claim to treat, diagnose, or cure autism, ADHD, or dyslexia. Its description says the device is “helpful for anyone who wishes to create and maintain orientation, otherwise known as being focused or concentrating.” As mentioned earlier, it’s technically presented as a device that could be used by anyone, not solely people with those conditions. Intentionally or not, it skirts the same line that herbal supplements, essential oils, and jade vaginal eggs peddled by Gwyneth Paltrow do. None of these things may necessarily cause harm on their own, but if misused or marketed improperly, they definitely could.
Right now health tech is like the Wild West. You can find anything from metabolism breathalyzers that say they can help you potentially lose weight to allergy sensors that promise to tell you whether a restaurant’s food may trigger a reaction. There’s even a controversial FDA-cleared basal body thermometer and app that claims to prevent pregnancy. Some wearables issue broad claims to improve your mental wellness, decrease stress, and increase your ability to focus with a combo of biometric analysis and guided meditation. Most health and wellness tech doesn’t have clinical research to back these assertions and relies on internal white papers to give credibility to well-intentioned-but-not-scientifically-bulletproof gadgets.
In many instances, these gadgets fly under the radar because if they don’t work, they don’t harm anything other than your pride or wallet. But when you have a device like NOIT that may negatively impact a vulnerable population, they should be evaluated thoughtfully by medical experts and health institutions — not corporate entities like Kickstarter. For many, the obvious choice would be the FDA. However, the FDA’s guidelines don’t reflect our new technological reality and if a device maker says it’s not meant to cure, treat, or diagnose — it doesn’t require FDA’s go-ahead. Often, if something goes wrong, the only recourse is a lawsuit.
It’s a frustrating scenario that creates murky grey areas where real people may get hurt — whether or not harm was intended. And until legislative bodies figure out a way to clearly outline how health and wearable tech should be regulated, marketed, and sold, the onus is on the consumer to make smart, ethical choices for themselves. Unfortunately, in the case of the NOIT, it comes down to which side you believe more: the device makers who say they’re just trying to do good or the critics who say NOIT relies on outdated research at the expense of the people it’s intended to help.
“Ethical autism approaches should have autistic buy-in, from a reputable source like The Autistic Self Advocacy Network, or the Participatory Autism Research Collective,” said Des Roches Rosa. “It’s not enough, as with the NOIT, to have one autistic person’s testimonial — that’s tokenism, at best. There is a huge problem with quackery in the autism ‘treatment’ community, so parents need to be extraordinarily vigilant about protecting their kids from questionable and even harmful approaches.”
“One of the things that’s important to recognise is that we do understand their concerns and we assume that they are genuinely good people,” Shier said of NOIT’s critics. “I’m glad that they spoke up.”
Until companies, lawmakers, consumer advocates, and health institutions come together to create a framework that protects the vulnerable groups, cases like this will only become more frequent, not less. NOIT happens to be an instance that when the online brouhaha happened, there were no reported cases of serious harm. There’s still an opportunity for NOIT’s makers to work together with autism advocacy groups, and if need be, adapt the device or how it’s used to better serve the community. Next time, we might not be so lucky.