‘Stop trying to fix us’, says Suzana Herculano – 07/23/2023 – Science

Brazilian neuroscientist Suzana Herculano-Houzel joined the two ends of her life, the seemingly inexplicable difficulties she faced in childhood and the end of her third marriage, to realize that she might have autism. After confirming her diagnosis and (as her daughter put it) almost casually “coming out” on Twitter, she says she wants to use her newfound self-understanding to change people’s views of the condition — and to better understand its underpinnings.

“One thing that became very clear to me is the following: stop trying to fix us”, he jokes. She cites one of the pioneers in understanding what is now called the autistic spectrum, the Austrian psychiatrist Hans Asperger (1906-1980). “At the time, he was the only one to realize that it wasn’t the children’s problem. [do espectro autista]but from parents and other adults, who wanted everyone to behave in one way.”

Herculano-Houzel, who is a columnist for this Sheet and researcher at Vanderbilt University (USA), says that one of the pieces of the puzzle that she only managed to put together later was reading the book “An Anthropologist on Mars”, by neurologist Oliver Sacks. The expression in the title of the work is a metaphor used to refer to the researcher with autism Temple Grandin, who said he felt the same strangeness as an anthropologist on Mars when trying to understand the social interactions between people who were not autistic.

“It was exactly how my mother always referred to me. She called me Marcianinha”, explains the neuroscientist. “Bicho do mato” was another familiar expression used to designate it. At the same time, like an anthropologist, she says that she tried to observe and understand the behavior of others as much as possible —in general, from a distance.

“I always knew I was weird, especially when compared to my sister, who was always extremely social, smart and charismatic. I lived quietly in my corner, cornered. Any time the situation involved some social or emotional stress, I was speechless, literally speechless.” Parents and teachers had to use a long list of questions for the silent, tearful girl—”Was it because of this? Was it because of that?” — until they hit on the right question, which was answered with a nod and the silence ended.

“At the end of my third marriage here in the United States, I realized that the source of the friction, the disagreements were communication problems. And they all, in the end, had to do with the fact that each of us works in completely different ways. And that I try to interact with a person who thought it was perfectly normal for us to function based on expectations and inferences about what the other’s intention was”, she reports.

This is where one more piece fell into place. For Herculano-Houzel, this happened because people with autism base their social behavior exclusively on facts and evidence, which they can verify directly — and on nothing else.

“My brain, unlike probably 95% of people, does not automatically jump to that part that says to itself: ‘So-and-so did this because he must be wanting this, because his intention must be this’. This is an anticipation mechanism that is the basis of the brain functioning of what I call mental right-handers”, she compares. “But left-handers, which is us, work in this different way: nothing in your behavior tells me that you intended to do so, and that’s it.” It’s not a question of empathy, as people with autism are equally capable of feeling affection and compassion, she points out.

The tremendous sensory overload that people with autism are often subjected to in overstimulated environments also helped her better understand how she suffered from exhaustion in airports and after long international trips — and why she loves wearing wide-brimmed hats in brightly lit environments, filtering out the excess visual information. Laughing a lot, Herculano-Houzel says that, when using the right to preferential queue to board a plane for the first time, she ended up facing yet another example of the peculiar way someone on the autistic spectrum behaves.

“It was the first time I entered that completely empty aisle on the way to the plane and I ran into the flight attendant. She asked: ‘Do you have your boarding pass?’ — and I simply replied ‘Yes, I am’ and went inside without showing it to her”, he laughs. “She had to come right up behind me and pat me on the shoulder.”

For the neuroscientist, there is no contradiction between being on the autistic spectrum and being able to give speeches with aplomb, like her. “It’s my special interest, it’s the thing I love most in the world,” she emphasizes. “It’s when someone asks me about something I know and asks to hear about it.”

“When it comes to the brain, neuroscience or something that interests me professionally, I stop being the weird, wild animal, the one who doesn’t talk, and I talk about it as long as there’s anyone interested in listening.”

Herculano-Houzel says it’s important to dispel misperceptions about the autism spectrum. She sees no reason, for example, to consider that there is an “epidemic”, as some say, nor that it is a predominantly male phenomenon. “The idea that the rate of girls on the spectrum is only now increasing, for example, has much more to do with the fact that women are socialized much more intensely to avoid behavior that is seen as eccentric,” she points out.

Also relatively rare, he argues, are the cases in which the presence of the autism spectrum has a severe impact on cognitive development. “It’s something we need to understand better. It’s possible that variability within the autistic spectrum explains part of it. It’s also possible that there is, in parallel, autism and intellectual disability, which is something different, in the same people. Or else some of the many types of intellectual disability have behavioral compensatory elements that resemble autism.”

For the neuroscientist, the tendency to identify patterns in the most diverse types of data is an element of the autistic spectrum that helps to understand the attraction that research has for people like her. “It’s what distracts me in the most difficult moments. Just put a set of data, a graph in front of me”, she jokes. “It shows the richness that exists in the diversity of ways the human brain works. It’s something to be celebrated.”