A crowdfunding campaign for a ‘tool’ that attaches to the back of the neck is abhorrent to people with lived neurodivergent experience, writes ADHD and Autistic advocate Rory McCarthy.
Just over a fortnight ago, I discovered a device on Kickstarter that was being marketed as a treatment for ADHD and Autistic children and adults. I noticed it because it was linked in a support group for parents of neurodivergent people. It’s been on my mind a lot since I saw it.
Called a Natural Orientation Inducing Tool, the device is attached with adhesive to the back of the neck, and emits a beep every eight seconds. The claim is that it is a “tool to help people to create and maintain focused attention”.
I spent a great deal of time looking into the science behind it, only to find that the device itself has no peer-reviewed science behind it at all. It breached, I concluded, at least three rules on Kickstarter’s Prohibited Items Policy, the main one being “any item claiming to diagnose, cure, treat, or prevent an illness or condition (whether via a device, app, book, nutritional supplement, or other means)”.
I wondered if my initial thoughts about it might be an overreaction, so I took to Twitter to share it with my largely neurodivergent following. The response was almost uniform – any neurodivergent adult who saw the device was horrified. It seemed to operate as a way of making Autistic/ADHD children comply with no clear research on how it works. It was also attached to the neck of a child between the shoulder blades making it near impossible to access. Most of us are so highly sensitive to sensory stimuli – so much so that clothing tags are unbearable, and most fabrics are too scratchy to wear.
This seemed like torture to most of us, and when I looked into the device further I found that it was recommended to be used primarily on non-speaking Autistic children as part of a completely unscientific approach for “treating” Autism. They speak of its magnificence, claiming that children are able to talk very soon afterwards and they have the testimonials to prove it. They have no independent research to show this claimed efficacy.
We all started reporting the device to Kickstarter based on the intended use. We were all told that this wasn’t a breach of the Prohibited Items Policy despite it being a clear violation. Then we had a vague email back saying they were taking action but they couldn’t tell us what that would be. Currently, the Kickstarter is still up and taking money, and it closes within 24 hours as I write this. I started a change.org petition which has garnered over 12,000 signatures trying to get Kickstarter to stop selling it. You can read the comments on the post to see how Neurodivergent adults feel about this.
It’s only through the Autistic community and my use of Twitter to self-advocate about ADHD that I came to realise that I was Autistic. There are so many misconceptions about Autistic people that made me believe I didn’t have it. The biggest of these misconceptions is that people with Autism don’t have empathy. This is completely discredited in modern science – a lot of Autistic people have hyper empathy (where the experience of other people’s emotions can feel so intense it can cause significant mental and physical pain). I have hyper empathy.
For all I know, the device might work. It might make your child more neurotypical in their behaviour. It might train out what you deem to be inappropriate. Your child might speak, but this could all come at a great cost. Masking natural behaviour like this has serious consequences, one that many Autistic adults have suffered from and can be utterly life changing.
I was officially diagnosed as Autistic this year. I am also an ADHD person which I was diagnosed with eight years ago. Last year I had what would have previously been called a “mental breakdown”, but that wasn’t what it was. I was instead undiagnosed as Autistic. I’d suffered what’s known as Autistic Burnout (sometimes referred to as “Autistic Regression” but this is generally hated by the Autistic community). This is a newly discovered outcome from Autism, which has been discovered only through the work of self-advocates, that can occur in adults as the result of masking behaviour and trying to conform to a society that isn’t made for you.
It’s not an exaggeration to say that this was the most terrifying time in my life for my mental health. I had no idea what was happening to me, why I had uncontrollable rage, why my moods would swing with the winds, why I would ruminate on negative thoughts and say them out loud repeatedly, why I punched walls when I had never previously been violent, why I became increasingly depressed about this behaviour, why I started punching and cutting and hitting myself and, finally, why I attempted suicide to escape those feelings. I thought I was never going to recover.
This experience and the resulting fallout from things that happened during this time are still ongoing. Due to heightened justice sensitivity, I spoke out about things that ended up causing me a lot of serious consequences. I broke a bone in my hand punching a wall. It hasn’t reset correctly and I still feel it every time I close my hand – a daily reminder of the hell this time was for me mentally.
A recent statistic from research in the US found that between 90-97% of Autistic adults may be undiagnosed. I have hyper empathy. I know what the costs are of masking. I know of Autistic Burnout. I’ll do everything I can to prevent that from happening to other people.
When I talked about the device, people kept mentioning a short story by Kurt Vonnegut called Harrison Bergeron where extreme equality is forced. There’s a device in the story which beeps every 20 seconds and emits a tone as implemented by “The Handicapper General” in order to make more intelligent people have their thoughts disrupted and keep them in line. I think this is a valid comparison.
It’s 2021 and electric shock devices were only banned for use on Autistic people last year in the United States. I was really hoping that maybe, just maybe, people would stop treating us as worse than dogs and forcing us to comply through inhumane means. We need people to accept and try and understand us, not to cure us. Attempting to do so could potentially end our lives.