The post Why “High Functioning” Autism Is So Challenging over at About.com’s autism section is a more comprehensive and yet more concise write-up of some of the same ideas I’ve covered in past blog posts, especially the “but you don’t seem autistic” themed posts.
I have all of the issues mentioned to some degree or another but can usually do a good job passing. But not always. Last month on my first week of a new consulting engagement my client’s project manager said there was a “coffee social” going on. He invited my colleague AJ and I to walk down the hall for a chat and to get some free coffee. I don’t drink coffee but I’ve learned that when the client wants to chat you go chat.
We turned a corner to the break room to find 30 or 40 people either waiting to get to the free coffee or milling around nearby drinking coffee and talking. The cacophony of voices presented a threshold beyond which if crossed would render me completely unable to follow any single thread of conversation. Though invisible, it felt like a force field barring my entry to the room. I could enter but navigating that space would be like swimming through gelatin.
There would be no chat if we went in. At best I’d leave the client wondering what might be wrong with me. It would cost me a lot of spoons no matter what else happened. A crowd like that can be debilitating given more than a minute or two of exposure.
If you don’t know about Spoon Theory, go read this now. Go on, Ill wait here.
Finding myself unable to walk into the crowd after coming this far, I had to give the client an explanation and told him about my autism. He reacted with the same incredulity I’ve come to expect, and gave the same example everyone else does:
“But you speak at conferences. You talk on stage in front of big crowds. How can you be autistic and do that?”
Not more, not less, just different
This seems to be a stumbling block for many people, especially those who aren’t accustomed to taking the podium in front of a crowd. I have a theory about this which I hope is one of those rare revelations that will blow your mind:
When practicing theory of mind – that act of trying to understand another person by imagining their thoughts and perspectives – I believe we begin with a model of ourselves and then figure out how much to add or subtract from various traits to approximate the other person. We assume that people differ by degree rather than by kind.
It probably sounds too simple or obvious to be profound but let’s explore the implications of that statement for a minute. If the point of reference for all experience is always our own mind, then instead of understanding the totality of another person as a separate and unique entity, we tend to perceive another person as the specific set traits that differ between us and that person, as well as the degree of those differences. Start with you, add some things here, subtract some things there, end up with me.
If this is accurate we might think of an autistic person as “like me but…”
- More sensitive to sound, texture, lights, smells, etc.
- More literal thinking
- Less able to parse body language
- Less theory of mind
- Less empathy
- More aloof
- More self-absorbed
The problem with this model is the initial assumption of “like me but with…” and it explains why it is so difficult for the average neurotypical person to reconcile my autism with my public speaking. There’s an almost universal assumption that a person with autism would be “like me but with heightened stage fright.” The foundation for that belief is that perception of autistics generally as “like regular people but with varying degrees of deficits” since autism is widely considered a disability. (Thanks for nothing, Autism Speaks.) To most people stage fright is anywhere from normal to debilitating. Whatever else it means to be autistic, less ability to handle that stress is surely an autistic trait. Right?
Breaking the mental model
Not only is that wrong, but its incomplete. People who object that my public speaking doesn’t reconcile with their idea of autism typically picture “public speaking” as the time spent behind the podium. They don’t tend to consider the time before or after the presentation. That makes all the difference.
I typically can’t attend sessions immediately before or after my own or take meetings in those time slots because to do so would incapacitate me. I assure you that “incapacitate” is an accurate description and used intentionally here. During the session before mine I often find a quiet spot close to the presentation room so that I don’t have to navigate the halls immediately before I go onstage. After the session I’m usually surrounded by people wanting to talk or exchange contact information and this happens while I’m hurrying to pack up and clear out for the next speaker. We then adjourn to the hallway where we are forced to continue the discussion in a noisier, more crowded environment. If it didn’t come off as creepy, I’d invite these people back to my room where we could talk in peace.
The mental model of other==me+- tends to work only when many traits are mapped and most of the ones that go unmapped are close matches.
Start with alien and work back
What if instead of assuming others were fundamentally like us, we begin with the assumption that they are alien but with some overlapping motivations and behaviors? Most people are comfortable with the idea that we should not ascribe human emotions and motives to animals. We may like to think our cat is embarrassed and would tell us “I meant to do that” when strutting away after a fall, but if pressed most people would consider the idea that the cat probably just recovered and continued on its way. Animals may express behaviors that are similar to ours but these usually come from completely different motivations. If they did not then everyone would be a “dog whisperer” or “cat whisperer.”
Does it seem wrong or offensive to explain autism in terms of cat psychology? Perhaps but the problem with that scenario isn’t suggesting that autistics are inhuman (which I’m not), but the very idea of “human emotions and motivations” as if those were homogeneous across the species. Maybe it’s time to ask ourselves why we are generally willing to accept that an animal’s motivations and feelings are completely alien to us but not that those of another human might be.
Aliens among us
At the conference it’s not that I have more anxiety in the hall and less on stage than you do, but rather that our anxieties arise from completely different sources.When you look out on the crowd the eye contact is meaningful. It is said that the majority of human communication is non-verbal and you are swamped with that rush of simultaneous input from every individual in the room. You can tell a lot more than I about what they are thinking and it’s mostly about you. Normally you can parse one or a few people focused on you and respond to them individually and appropriately. It’s second nature to you and difficult to turn it off so in the presence of 50 people you strain under the tidal wave of sensory overload. Make it 500 and perhaps you collapse altogether.
Out in the hall between sessions you are anonymous in the crowd. Sure there are lots of people pressed close trying to rush to the next session but none of them are focusing on you. There’s a lot of sensory input but no obligation to respond to anyone in real time so you filter it out. Perhaps you pull out the event program and look for your next session or scan the crowd looking for a colleague and these are not particularly difficult tasks. This, for you , is the easy part.
But for me navigating the hallways is the hardest part. In high school crowds were dangerous. While walking between classes a fist might come out of nowhere to strike my face, knocking me to the floor and scattering my books. The same bunch of guys also thought it was amusing to signal an accomplice to burst out of a classroom as I approached, “accidentally” striking me with the weight of a solid-core fire door at high speed. There was a scoring system based on whether the door struck, whether the knob struck, whether the impact caused me to drop anything, and the highest score was awarded if it knocked me off my feet. Each grading period was a “match” and the score reset each year. To this day I can’t walk past an outward opening door without putting my hand out to deflect it.
One of the reasons I was so vulnerable in the crowded halls was that the sensory overload was debilitating and this caused me to act differently than other students in that environment. I tried to duck my head down and move as anonymously and as quickly as possible, weaving through the crowd in as little time as possible without talking to or touching another person. I was obviously scared and the bullies homed in on me like heat-seeking missiles. Today I don’t have bullies in the crowd at the conference so you might think it is easier. Unfortunately, I still experience the same autistic sensory overload as always but now it comes with a hefty dose of PTSD. Crowded hallways very quickly become debilitating to me.
Speaking is the flip side of this. When presenting I experience the verbal communication but almost none of the body language. The attendees can be staring right at me but I don’t feel the connection to them that I imagine you do. To you they are people. To me they are attendees until and unless they speak up, at which point that individual becomes a person – among bunch of attendees. If I have any anxiety it is about people who want to make small talk before the session. That’s not a huge concern because I have the mic and the podium and I control the room. The larger the crowd the greater the social pressure to not speak up so as the number of attendees goes up, my anxiety actually goes down.
I suspect this is the complete opposite of how most people experience the conference and stage fright. So if you think I am like you but with more anxiety in the hall and less on stage that would completely miss the essence of who I am. But it does explain why people believe that my public speaking is evidence against my autism and not for it.
I’m asking you to consider that our motivations are so different as to be alien to one another and that is where it gets tricky. In the mental model of “like me but…” the more different someone else is, the more we fear or reject them. Ordinarily we reconcile this by accepting the fear and trying to find common ground to lessen it. I propose that we instead work to rid ourselves of the fear so we can embrace our diversity.
Applying the theory
Seeing me as being like you but with less stage fright makes for a more or less functional model describing how we might behave on stage and not much else. Any trait for which you do not calculate the delta defaults to an assumption of “sameness.” That assumption is often correct because you really do have more in common with me than with my cat, but when it’s wrong it can be massively wrong.
For example, if I pause in conversation you probably inventory all the reasons why you might make a similar pause and ascribe the most likely one to me. If the context casts doubt on your first choice, you go down the line until you find one of your motivations that seems to fit. If you have a dishonest streak you may think I paused to invent a lie. If you are an expert or have strong opinions on the topic, you may think the pause was due to my failure to understand. There’s an almost certain probability that whatever the motivation you ascribe to my conversational pause it will be based on the set of motivations which would generate similar behavior in you. In all but rare occasions, this calculus takes place completely in your subconscious and in real time. You simply “know” that I’m dishonest or not understanding your point. Once in a while if you can’t quite reconcile the motivations you want to ascribe to my words or actions then you stop and try to consciously reason it out, but always from within the context of your own experience.
Unless you are autistic, there’s a high probability that whatever motivation you ascribe to my pause would be wrong. Because I’m autistic the most likely reason why I take that pause is that my initial response would be socially inappropriate and I’m playing a mental chess game. I am consciously calculating our conversation out several moves in advance to come up with the “right” response. Since this is instinctive to you, chances are pretty slim that it would ever occur to you to ascribe that pause to my task of consciously running a rules engine in my head.
It isn’t accurate to say that a neurotypical person has “more social skill” than an autistic person any more than it’s accurate to say a bat has “more radar” than a human. The means by which we navigate social spaces is one of the areas in which neurotypicals and autists are alien to one another.
As a result, the mental model of “shared human emotions and motivations” which gives rise to the model of autistic people as “like me but with less or more of certain traits” completely fails. What’s worse, when it fails it can do so silently because we have many behaviors in common and there’s a tendency to believe shared behaviors arise from shared motivations. That’s a huge blind spot. Even though it’s one I’ve been exploring in terms of autism it applies universally.
Consider that religious people tend to believe that if others not of their faith were to convert it would improve those people. Atheists tend to believe that the faithful would be improved by disavowing their god(s) and religion. The two positions seem diametrically opposed except that both groups perceive the other as “like me but less along this particular metric.”
And isn’t that pretty much how we see “other,” however we define them?
The homeless? The poor? They are like us but with less of…something. Less motivation. Less honesty. Less discipline. “If they were more like me,” we hear the talking heads complain, “they would not be so disadvantaged. Bunch of lazy, cheating freeloaders addicted to the welfare tit. Their problem is not that the system is stacked against them; their problem is they aren’t like me. They chose to be less so people like me need not care for or sacrifice for them.”
- Refugees and immigrants are other. They are less.
- The disabled are other and the “less” is right in the name.
- The elderly are other. They are less. (Go visit any care facility if you disbelieve that.)
- Foreigners are other. They are less.
- Obese people know best that more is less. They are other.
- The imprisoned are other. They are less. And if they weren’t before they went in, they sure as hell are now.
- People of other cultures are other. They are less.
- In our current patriarchy, women are less.
We take it to ridiculous lengths. Fans of rival teams?
“You bet your team jersey they are lesser humans and we’re gonna prove that by rioting.”
“Because you lost?”
“Naw mate, we won. This riot is in celebration.”
“Ummm…right. You have funny standards for ‘better’ if you ask me.”
You know who isn’t less here in the USA? Since the country is run by rich, old, white, guys, you ordinary white guys don’t have to be less. Well, you kinda do since you don’t have a bazillion dollars and can’t buy your elections at auction, but among the lesser folk you are kings of the hill. Now run along and enjoy your dominance. The adults have more important things to do – like negotiating the TPP behind closed doors and presenting it to the world as a fait accompli. There’s no cabal, by the way.
The Big Us
The About.com article to which I linked at the beginning of this post helps if you have that “like me but…” mental model. The author is seeking to map out more data points so you can work out the delta between us. According to him I am like you but with…
- Extreme sensory issues.
- Social “cluelessness.”
- Anxiety and depression.
- Lack of executive planning skills.
- Difficulty with transitions and change.
- Difficulty with following verbal communication.
I have all of those things to varying degrees. Clearly by those standards, I’m disabled.
But what if other classes of people were not less but merely different? Lots of people have an epiphany when someone they love becomes disabled or homeless, comes out as gay, suffers depression, or otherwise makes us rethink our positions.I didn’t find out about my autism until I was in my late forties. That revelation prompted more than a few people to rethink their views on autistics.
We will all almost certainly rethink our positions on the elderly should we be lucky to live that long. Pete Townsend penned the line “I hope I die before I get old” back in 1965 and he’s still alive as I write this. How’s that working out for you Pete? Are the elderly now part of your “us”? I think they are. Has your thinking evolved on that topic? I think it has.
It’s different when all of a sudden they become us, isn’t it?
As a thought exercise I challenge you to ask yourself how you would treat your various Them groups differently if suddenly they became part of your Us then re-read the About.com article with fresh eyes. The stereotypical “absent-minded professor” is someone who lacks executive function. Shall we “cure” deficits in executive function if it means we never have another Einstein? Do we “cure” social cluelessness if it means we never have another Nikola Tesla? Or do we cure our tendency to think of people different than ourselves as deficient?
The About.com article focused on autistic deficits. It’s left as an exercise for the reader to decide whether to use those descriptions to better understand autism or to better understand people who happen to be autistic. You know who I’m talking about, right?
The world is really hard to understand. I could only wish for one thing, Acceptance. Thanks for this eye opening article of yours.
The world would be a dull, uninteresting place if we “cured” all those differences. I would say my life has been more interesting just as a result of my friendship with you, so Vive La Différence!