A few days ago I stumbled across an article describing Kamila and Henry Markram’s Intense World theory of autism (more formally described in their own article). This, to me, was like finding the key to unlock a treasure. Intense World explains so well my experience of autism in a way no theory based on sensory deficiency can. Although I do know there are aspects of human behavior to which I am impaired (face recognition, body language, cognitive empathy), that explanation only goes so far and leaves much unanswered. However, the communication deficits are the most obvious symptom to many people’s eyes and I believe that may be why the Intense World theory can be counter-intuitive. We’ve been trained to look the other way.
Shortly after first reading about Intense World theory, I began to see it described in the blog posts of other autistics. In her post Overloading on Emotion, Alex Forshaw describes much the same thing:
Imagine if you will that you are sitting on a quiet, deserted shore. The sun is shining: it’s warm. There’s just enough of a breeze to be comfortable and the small waves lap rhythmically. You are relaxed; you lean back and close your eyes sleepily…
..and then you open your eyes again to find you have been transported in that instant to the middle of the city at rush hour. Traffic all around: engines snarling and horns blaring. People jostling and rushing all around you. Noise, smells, lights, touches coming from all directions: a cacophony registering on every sense at once. And that’s how it feels to be hit by that tidal wave of emotion.
How fitting that Alex begins the description with the opening words from The Twilight Zone, because that’s what it can be like – a world too strange to explain, that has to be experienced to be fully understood.
As a child, people called me Mr. Spock or Professor because I didn’t show emotions and read voraciously across a broad range of subjects. But the truth is I had a hard time watching television with the family because I’d be too overwhelmed with emotion. You’ve heard the phrase “tear jerker?” For me, even the advertisements can elicit tears. Oftentimes more so than the actual show. You always know Kwai Chang Caine or the crew of the Enterprise will come out of the episode OK, but the heartbreak of psoriasis actually is heartbreaking. After my mom told me what psoriasis is, the Tegrin ad plagued me for years. When it came on the TV, I became distressed. If I cried openly, I was belittled, so instead I tried to hold in the emotions. They found other outlets. Facial tics, repetitive movements, even the occasional meltdown when something completely unrelated broke the dam and all that emotion burst out.
To my family, I had “dealt with” crying at advertisements. They considered it a closed issue so the meltdowns were attributed to character flaws. I was immature, they said. Life isn’t fair and I can’t always get what I want, they said. Nobody, eventually not even me, had a clue that my kicking, screaming meltdown, initiated by some trivial trigger event, was really caused by an explosion of bottled up emotion, compounded by rage at having no acceptable way to express it. So I could be perfectly fine one minute, happily watching TV, then my brother would change the channel and I’d go ballistic. Changing it back was no help at that point. Anything could set me off.
In retrospect, especially in light of Intense World theory, the meltdowns were inevitable given the way I was taught to cope with overwhelming emotion. At the time though, I simply had “behavior problems” that needed to be worked on. The focus on controlling my reaction in the face of one of these events was more of the same. Build bigger and thicker walls to contain the meltdown.
So glad you got those meltdowns under control. Next problem: why don’t you interact with kids your own age? It’s like you’ve built some kind of wall to keep them out.
Professor? Mr. Spock? Those aren’t who I am. That’s who I was made into.
Alex describes this in context of her marriage. She says her wife “still gets the impression that I don’t feel emotion because I don’t show emotion. She struggles to understand how anybody can be experiencing feelings without any outward sign.” I wonder whether Alex was taught as a child to suppress that emotion in much the same way that I was. On the other hand, for many of us that lack of outward display is the natural state. Either way, the thing we share is the experience of complete and total overload – emotionally, sensorially, or (shudder!) both.
I once wrote that “if you have an autistic person in your life, the greatest gift you can give them is to communicate with them on their terms. Be their refuge. Be the person with whom they can experience meaningful human connection without filters. Let them be their most authentic self.” One reason my wife and I have been together for thirty years is that she is that person for me. We didn’t start out that way. In the beginning, she too wanted me to “act normal” when I went off the rails. But over time she realized that letting me express those extreme emotions is what keeps me from going off the rails. If I cry, she holds me. If I cheer, she cheers with me.
Not that this is all one-sided. When my wife cries, I hold her. When she cheers, I cheer with her. We contribute each according to their strengths, and complement each others’ weaknesses. Individually we are each strong and self-sufficient in our own way. Together, the whole of us is more than the sum of the parts.
Thanks to my wife, I’m no longer Mr. Spock. I am, as Landon Bryce says, my own autistic self. I am lucky and able to function well in the working world. The ability to be authentic with my wife gives me greater capacity out in that world. Airports bother me less. Crowded conferences bother me less. Heavy traffic bothers me less. All because I now have a safe way to release emotion and a safe place of refuge where I can drop my filters and just be me.
If you have somebody autistic in your life, or if you are yourself autistic, you might consider adding Intense World theory to your repertoire. It may not be a perfect fit for you, but that’s OK. We aren’t looking for the silver bullet, we are looking for nuance. Distinguishing between overload and deficiency and then approaching each with different techniques sounds obvious when stated plainly. But if all you’ve ever heard about autism focused only on functional deficiencies, then Intense World isn’t something you are likely to arrive at on your own. Now that you have, does it explain the autistic world a bit better? It did for me. I hope it helps you too.