Simulating neurodiversity
An interview with Philipp Wolf
A Volcano Named Junnuru
By Meghana & Chetan Junnuru
A volcano named Junnuru
erupts inside our bellies
at the sound of a pattern
family member’s pattern of joy
or pattern of worry
We experience synchronous
and asynchronous changes
good and bad
heavy and light
We laugh like
the alapa pattern
starting at our heads and
ending at our toes
We scream when it
rocks our bellies
like the pattern of a song
pattern of drumming
alapa pattern of emotional pain
We feel the
joy and pain
in our alapa bodies
all over our navels
all over almost everything
“There are mornings when I wake up and I'm fearful of going to work because I just don't know what's going to happen. And it's not just about the children I teach and how they're going to respond - whether somebody's going to have a conflict or a tantrum or episode. It's also: ‘What within the structure of the school is going to irritate me today? Is it the bell?’ The school bell is right beside the room I work in. There's a bench there. I don't know how many times I have seen educators bring autistic children down and sit them right fucking there at that bench. Which is three feet from that bell.”
This is dancer Eryn Dace Trudell, whose voice was featured in my last post. She’s referring to the sensory assaults that the heightened senses of the autistic children she teaches are subjected to in school environments every day. These assaults can result in violent tantrums or autistic ‘meltdowns’ in response to being overwhelmed.
What’s it like? Well, to give you a bit of a feel of it, this video is one of several out there trying to illustrate what it’s like to experience the world with an autistic nervous system:
According to Autism Parenting magazine, “a meltdown is defined as an intense reaction to sensory overwhelm. When a child with autism is overwhelmed, he/she knows no other way to express it other than with a meltdown. This might involve emotional verbal outbursts such as screaming and crying or physical reactions like kicking, biting or hitting.”
It goes on to say “Although they may look similar, meltdowns are different from temper tantrums. A temper tantrum is usually a child’s method for getting what he/she wants. A meltdown, however, has no purpose and is beyond a child’s control.”
Now I want to introduce Philipp Wolf. Wolf is a German-born serial entrepreneur and producer, and an outspoken advocate of a strengths-based view of neurodivergence. Wolf strongly disagrees with the common wisdom that meltdowns have no purpose – that they are maladaptive and unintentional outbursts. Instead, he proposes that meltdowns trigger instinctual responses — for example caregiving, or withdrawal — in the people around. This is useful as it results in a change in the environment. For example, partners or caregivers may provide comfort, remove stressful stimuli, or get the autistic person out of the environment that’s causing pain.
Wolf says, “I have my own experience with meltdowns. My wife goes into flight. She disappears. The cat goes into flight. At some point I thought, maybe that's the whole point of it. Maybe the point is not, ‘Oh, I don't have control over my brain and anything anymore. I'm just going to flip a table.’ (True story — I flipped the table). And that's it.
“I realized that — unlike shutdowns, where I can’t do anything about a situation and so I power down to conserve energy — the meltdowns I have had all resolved the situation. More or less successfully. Because you are actually actively changing the environment around you. Look at the child who has a meltdown at the grocery store. This is not because I want to have something, this is because I want to get out of here. So then I started looking at published papers to see if someone actually talked about that. And it turned out that no, nobody really ever talked about an autistic meltdown being something good, being a mechanism to help escape.”
Seen in this more functional light, meltdowns are actions aimed at self-preservation rather than passive and pointless reactions. They have a purpose. Wolf has been pitching this idea to a few cognitive neuroscientists (including me) and autism researchers he knows, and they (including me) have told him they think he may be on to something.
Wolf received his own diagnosis of autism relatively late in life, at age 38, after he had already achieved an adventurous and often highly successful career. Wolf grew up in what was formerly the German Democratic Republic. As a kid he wanted to become a physicist, but torpedoed his chances with his tremendous gift for enraging his teachers by questioning their assumptions and pointing out when they were wrong. “When a teacher told me, ‘light travels straight,’ I'm like, ‘nah, it doesn't, it's curved. It's curved by gravity.’ And then the teacher says ‘no, that’s wrong. I know for a fact it isn't.’ So I kind of gave up on school, because I thought, ‘what's the point then?’”
But then, for an economics assignment, he started a web design company with a fellow student. Not many people in his part of the world were doing web design at that time, so he and his friend were asked to design the school website. After that, requests started coming in and he found himself head of an incorporated company at age fifteen.
He had a similarly checkered university career. Once again, one thing led to another. This time he found himself taking journalism courses, which led to opportunities to produce reality TV shows and concerts, which honed his production skills. And then someone suggested he apply to film school. There he had luxurious resources at his disposal. He took courses in special effects, which led to a job with a visual effects company and the opportunity to work on Game of Thrones.
“I did something like 14 projects at film school. And in the break between the first year and the second year, I got a call from the student office while at work at the special effects studio. I thought, ‘Well, that can't be good.’ But they told me that, ‘We realized that you achieved all requirements to go into your final year. Do you want to go into your final year next year? So make four and a half years into two years?’“
Wolf said yes. His final project was picked up by one of Germany’s two major production companies and was produced as a feature film, for which he was visual effects producer and supervisor.
It was during this period, says Wolf, that “I had my very first big episode of Something Isn't Right, which landed me in the hospital with the idea I might have had a stroke. But it wasn't, and they couldn't find anything. Today I would say it was very likely a shutdown, a very very very intense one, and I still don't have recollection of anything over that two weeks.”
After recovering from that episode, Wolf worked in Germany on feature films, commercials, animated TV shows and more until he was headhunted by a Montreal-based company to work on projects with multimillion dollar budgets. “And then my third project was Ghost in the Shell, which was massive, with a very short timeline. This was intense, insane, and I learned so much through it.”
Now based in North America, Wolf also started his own company, in general “playing into the ballpark of being entrepreneurial, trying to be at the forefront of things, challenging how things are going.”
As part of this Wolf traveled, spending time in Los Angeles and India. Then came the pandemic.
“In March during the pandemic I thought, ‘We need to do something for visual effects workers.’
“So as part of an organization for visual effects, together with a friend in New Zealand, we created a health and wellbeing committee, and within that I produced a podcast series about mental health and visual effects. For example, we had a visual effects supervisor from Star Wars talking about how he keeps a work-life balance. We had conversations with psychiatrists, psychologists and a mental health performance consultant, as well as the director of Kung Fu Panda. And while producing this I learned so much about myself that it actually became really hard to produce.”
“Then I started seeing a psychiatrist and the psychiatrist was like ‘Hey see a therapist,’ so I started seeing a therapist and at some point I was like, ‘Something ain't right.’ And then I was watching The Good Doctor — which now I have a really hard time watching — and I realized I could really relate to it.
“I said to my partner, ‘ I might be autistic.’
“She said, ‘ What makes you say that? … Okay yeah you might be autistic.’
“‘Okay,’ I think, ‘Interesting, there might be something to it.’
“I ask the therapist and she says, ‘Maybe. Ask the psychiatrist.’
“I ask my psychiatrist, and she says, ‘Do you really need that label?’
“I said, ‘I actually think it will be helpful.’
“And then she referred me to a psychiatrist specializing in ASD (autism spectrum disorder). l don't like the term ASD, because it's not a disorder, it's a condition. And this was quite a lengthy process that included my wife and so on and so forth. Then around March 23rd, two years ago, I got an email saying that there's a fancy doctor’s portal message for me. And the diagnosis was autism-ADHD-giftedness. And suddenly my tendency towards obsession, more knowledge, always challenging the status quo, etc. also had a name: ‘Autism.’
“And then I went into a six month existential crisis, because you revisit your life. You realize, ‘Hey, teachers were or were not actually against you. And my parents actually went to a neurologist with me because I was different than others. Everything starts to have a new perspective.”
Superpowers
Autism-ADHD-giftedness. From my own interactions with him, I’ve noticed that Wolf has a tremendous capacity for lateral thinking, webbing together massive amounts of information. And he is hugely creative and generative. I’ve been participating with him on a project using art to illustrate the experience of living with Parkinson’s disease (which will be the subject of a future post, coming soon) and he is a fountain of vividly worked out, ingenious ideas, using technology and theatricality, for conveying experience.
The combination of traits can be extremely uncomfortable, and Wolf says that they sometimes battle each other. ADHD expands outward, and “Autism wants everything in order. It wants everything in routine.“
And the giftedness – that involves a capacity for seeing patterns. “If I could give away one of the three, it would be giftedness,” Wolf says. “Part of what I attribute to the giftedness portion of my head is that I don't see problems, I only see solutions. Which is great, but it's horrible because I have to bite my tongue the whole time. Because I have a really hard time keeping it in.”
As for the autism, “When we talk about the strength based approach, when we look at everything with a purpose, then we start appreciating things from a different angle,” he says.
Mind you, he qualifies, “When we take a strength-based perspective, we do have to appreciate the fact that some people with autism are debilitated by the condition. But more often than not, it's comorbidities that are debilitating, and not the autism itself.”
One of Wolf’s missions is to fit the superpowers of neurodivergent people with jobs they can excel at.
“I had an interview with a parent about their adult child, who had just graduated from college. The child is autistic and non-verbal. We were talking about what’s next. The parent mentioned, ‘Oh yeah, they (the child) is now moving into a care home. And job-wise, there are no jobs.’
“I asked, ‘ What's their special interest?’
“‘Oh, they love doors. They have to watch doors opening and closing in a particular rhythm, like when we’re out and about, timing it perfectly.’
“I said, ‘Yeah, I can think of a job right away. City planning. Visualize traffic lights as doors and you have the best person for that job right there. And all of our frustration, especially in Montreal, will go away.’
“But this is not how we think about a non-verbal autistic young adult. We think, ‘Yeah, we put them in a care home and then that's it. Because there's nothing else.’ But it's not true. The disability is the environment. It's not the person. We're on a track to highlight those advantages, those pattern recognition skills, those lateral moves.”
Below is a TED-X talk by cognitive neuroscientist Dr. Clifford Saron on what he has learned by entering the world of children on the autistic spectrum.
“In terms of one of the greatest balances I think we can achieve – it’s to temper the hegemony of our sense of the world with a deep interest in the lived experience of others. Often we’re not in touch with the limits of our presumed knowledge.” — Dr. Cliff Saron
In October, 2023, Wolf and co-founders, Katie Mitchell and Dr. Drea Letamendi, decided to incorporate a new company, swyvl.
According to Wolf, the goal of swyvl is to foster acceptance of the diversity of human experience. They aim to do this using immersive technology to allow users to experience a neurodivergent perspective first hand.
“It will never match a distinct neurodivergent person's perception,” Wolf points out. “Never. Because that's unique to you, to me. But it is research-backed and it's created together with neurodivergent individuals. It’s going to be a stylized and artistic rendition of an autistic experience, or of an ADHD experience and so on.”
With swyvl he is applying his previous experience with journalism, engineering, software development, etc. to his newly gained knowledge about autism. “And now I'm surrounding myself with people who have insights into neuroscience, into behavioral science. And what I do best is lateral connections. And this is kind of where we are today.”
What would the kind of immersive technology experience swyvl offers be like?
“You have a VR headset on and you see from my perspective. You see this cafe through my eyes and you see the coffee maker — I actually see the nozzle that makes the noise. You see the person who just ordered, the person who is pacing around there waiting for that coffee, the person writing stuff, the light. You see the light over there flickering. You have a hard time focusing on the conversations because there's no filter. And then you think it might be easy if you just look into the eyes of the person who's talking to you. So you look in that person's eyes, and the voice fades away a bit more and everything else gets a little bit louder. Things like this.
“It could also be the experience of a child at school, or going to a gym, or being in an open office environment — things like that. It’s to plant a seed of a different perception of the world and maybe you say ‘oh yeah that's how you see it, that's all normal.’
“For a long time our pitch included the claim that we want to create empathy. But quite quickly I realized that you can't create empathy. Empathy is something you don't have control over because it’s something the receiver decides to feel or not. The funny bit is this is very much also the storytelling filmmaking approach. You ask, ‘What emotion do I want to provoke first?’ In a horror film I want to create fear, I want to create a feeling of unease. But the thing is, if you focus on this outcome, you might hinder yourself.
“What we do for the general public is basically provide all of those different scenarios from gym to playground. And you have a little bit of an onboarding into the scenario where you’re told, ‘this is what you're about to experience,’ and at the end, ‘those are your takeaways.’ And when we put this whole thing into a professional setting, be it enterprises, government organizations... We actually have seminars attached to it because it needs to be put into context. It's not just ‘Oh my gosh this is how overwhelming a coffee shop is for someone with autism.’ No, you need to understand what can you actively do to make this better? What can you actively do to create a more universal accommodation for everyone?
For example, “When you’re thinking about inclusive design for spaces, keep the audio design of a room in mind. For example, do everything you can do to remove standing waves in the room. Those waves are likely gonna be in an inaudible frequency, and ‘neurotypical’ people won't hear them, but they still will feel it as pressure on their chests. Some neurodivergent people, like me, hear it and it drives me crazy. So if you remove that, it's not gonna drive me crazy anymore. And guess what? The ‘neurotypical person’ doesn't have the pressure on their chest anymore. They will also feel better, even if they won't be able to say why.
“This is where universal design helps everyone and not just the person who needs the accommodation. And when we start fostering an environment that accommodates the diversity of human experience, and not just a singular use by the standard human, everybody benefits.” Of course sometimes, as Wolf acknowledges, design can’t always be universal. Different types of nervous systems have different, sometimes conflicting, kinds of needs.
But sometimes there is little to no conflict in an easy accommodation that can make all the difference. “If you have an autistic co-worker and they ask to wear noise canceling headphones, even though nobody else is wearing them, maybe you should say yes. Or if a parent of an autistic child says, ‘Hey, I know you have a rule in class that they're not supposed to play around with their pens and stuff, but can my child play with this stim toy because it helps regulate her sensory inputs?’ Those are conversations we need to have, and those are conversations that currently don't happen often enough. Just due to the fact that we don't know enough about autism, there are so many biases, there are so many misconceptions, there are so many lies around the topic.
“We have at this point in time ten companies who want to use our platform for employee training. This includes large entertainment companies, large banks, large consultancies. Because more and more they realize that a diverse workforce is important because different perspectives is what brings innovation, what brings us to move forward as a collective.”
For more about swyvl, here is a media writeup in Autodesk.
There are a lot of strong neurodivergent voices on social media these days. If you follow them, you may feel that what Wolf is proposing is just plain obvious. But then, I think of the instances Eryn describes of school rules that make autistic students’ lives miserable: Scratchy uniforms, flickering fluorescent lights, loud shrill bells, rules against fidgeting and moving around, playgrounds and cafeterias full of voices and clanking and kids hurling themselves randomly at each other.
I can relate to the sensory sensitivities autistic people describe. I often experience sensory overload and find it painful. I CAN filter it out – it’s just effortful to the point of being exhausting, and I have to tune a lot of the world out to do it. I find supermarkets unbearable. Casinos are hell. I remember hiding under tables at school as a kid, and crying at the roar of the vacuum cleaner. I will never forgive a certain boy for popping a balloon, on purpose, at my 4th birthday party. I remember my son hiding under a table in a particularly chaotic classroom. The fluorescent lights of my high school hallways and cafeterias gave me daily headaches and I was spaced out a lot of the time. I came so close to dropping out of school for good. And how many times have I, out of cluelessness about their neurodivergent experiences, made someone else’s life harder?
I recently saw a headline claiming one in four or one in five North Americans are neurodivergent. I have no idea if that’s remotely accurate.
But I tell ya, if I have any extra cash in the near future I’ll surely invest it in swyvl.
Here is a link to podcasts produced by Philipp Wolf
Answers Toward Questions Other Than What Is Autism
By Adam Wolfond
Ticcing through the world
is like touching it
The inward rotation of a spiral
is like amazing tall idea
always thinking
around and
out
Inside the world is the question
of easy touch
Good thought moves like fluid water
and the way of water is raining
really into the seething good
cracks of wanting
thought
Mostly I sometimes tic through the world
and that is the way I feel
I feel the world too much so open
bothersome work is to feel
inside pandering
to language
The work is to feel the world
that is touching me
 | A guest post by
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