Understand the importance of neurodiversity for social relationships

Not long ago, my partner got the word “neurodiversity” tattooed on his arm. It was the way he found to ritualize the diagnosis of autism for Pedro, our 4-year-old son. And, despite being a subject in evidence in recent times, there are those who still ask him what he means. The lack of knowledge does not surprise me. As much as it seems like an intimate word to me, it is not. That term didn’t even exist 30 years ago. It first appeared in an official record in 1998, in a chapter written by Australian sociologist Judy Singer for a book published by UK Open University Press.

Judy Singer’s concept of neurodiversity is an analogy to biodiversity: just as biodiversity encompasses all animals, plants and microorganisms, neurodiversity represents the neurological plurality of all human beings. “I often say that it is nature’s ace in the hole, the fact that we are all diverse is a great asset in life, because that is what enabled us to get here”, says Dr. Raquel Del Monde, neuropsychiatrist, mother of an autistic boy and reference in diagnosing adults.

We are not all neurodiverse

Raquel explains that neurodiversity concerns our cognitive processes, that is, how we receive and process external stimuli and how we elaborate our responses and behaviors in relation to the environment. However, despite diversity being intrinsic to human beings, there is an established pattern – and being outside what is expected from these processes characterizes a different neurological functioning: neurodivergence. Therefore, care must be taken not to fall into the fallacy that “we are all neurodiverse”, which minimizes the damage caused by the differences that characterize neurodivergences.

we are all different

Unfortunately, schools are the champions of this trap, in which teachers and coordinators claim that everyone has difficulties. “This seems like an empathetic statement, but in practice it serves to minimize the difficulties of neurodivergent people. We are not all the same, we are all different. And besides, some people are more different than others”, emphasizes Márcia Faria, entrepreneur and neuropsychopedagogue, neurodivergent activist and atypical mother.

the trend of society it’s always about making everyone equal. “It is easier to deal with people who are within a standard because it makes it possible to establish conduct that is also standard, which will be replicated in all environments”, highlights Raquel.

Embracing neurodiversity is, therefore, breaking the standardization of social structures. “It is fundamental to show that there are neurodivergences, which make people different in a way that they need accommodations, technologies and resources that other people do not need”, adds Márcia. And, in the end, everyone wins with what’s different.

Coexistence generates learning

Pedro was still a baby when I suspected he was different. His constant crying gave the feeling that he was always upset, bothered by something. When he wasn’t crying, he was always quiet. I never heard a babbling. He was over 1 year old and didn’t eat anything. He was already 2 and didn’t speak a word. He slept very little and his little hands made endless flights. As a journalist, I had already written a lot about child development and I knew the first steps, but as I delved into this journey, I discovered how much we don’t know about neurodivergences. And, worse: the little we think we know is stereotyped, limited and capacitive.

In the case of autism, specifically, I discovered how ingrained in the collective imagination is the character Raymond Babbitt, an autistic person with Savant syndrome, played by actor Dustin Hoffman, in the 1988 film Rain Man. This happens because we don’t live with neurodivergent people. My son, for example, is the first autistic person I have come into contact with, and he opened up a universe of knowledge in my life. Perhaps, one of the most beautiful is the ability to name without suffering: Pedro is autistic. And that’s neither good nor bad, it’s just who he is.

Consequences of missing a diagnosis

From a very young age, Márcia perceived herself to be different from other people. As much as she liked it, she tried hard not to be that different. “I always tried to do activities to be with more people, but I was always quite lonely. I had almost no friends and never knew how to relate to the few I did have. I’m actually still learning how to do it,” she explains. She says she didn’t have a typical, party-filled adolescence. Her friends were the books, CDs and records that she listened to over and over again.

“I have traits that people don’t usually like, least of all in girls. For example: I don’t know and I don’t like to demonstrate emotions or affection, I do not understand or give importance to social rules, I have difficulty expressing myself and also in non-verbal language. She was often called unfriendly, weird, thick, stubborn and even rude. I’m distracted, I like excessively what most people don’t like. I say things considered inappropriate, I don’t have much of a filter. Sometimes I can’t speak or what comes out is different from what was in my head”, he adds.

All these characteristics distanced her from relationships with other people, affected her life and her performance in everyday functions. Not knowing why she was like that made her believe there was something wrong with her. With that came low self-esteem and abandoning things she enjoyed doing. “All of this led to misdiagnoses and, several times, endless cycles of crises and burnouts,” she says.

Diagnosis relief

Márcia is the mother of Maria Antônia, diagnosed with autism when she was 1 year and 9 months old – today, the little one is almost 6 years old. The one who noticed the signs was the father. “At first I even agreed with him. But then I thought it was an exaggeration and that, in fact, Toninha was growing up and looking like me”, he says. Over time, Márcia made friends with some autistic adults, who began to identify autistic characteristics in her and encouraged her to look for a diagnosis. “I went there to clear that doubt, but at the time I didn’t believe it could make any difference,” she recalls.

But it did. Many things are still changing. Marcia has learned to recognize your limits and that lessened his crises. She also tries to reduce masking (masking her natural personality), has been allowing herself to do her stims (self-stimulatory movements) and her “weirdness”, because now she knows that there is nothing wrong with that. “I had to review my whole life. But going through life without feeling like you belong and now knowing why and meeting people like me is liberating, ”she says.

Interference of lack of professional training

Even today, the diagnosis of neurodevelopmental disorders is not simple. Dr. Raquel Del Monde explains that there is a big gap in the training of professionals. “There is no in-depth training to diagnose these neurodivergent conditions, any of them. And not having the support of something more objective, such as biological markers, is also difficult, because the diagnosis is entirely clinical. Therefore, dependent on good training, ”she emphasizes.

Making peace with yourself

In her book Other Ways to Use Your Mouth, Rupi Kaur writes: “we are all born so beautiful, the great tragedy is that we are convinced that we are not”. Adults seeking a diagnosis have spent lives of inadequacy and suffering, not knowing why they were the way they were. As in Rupi’s poem, they were born beautiful, but were convinced otherwise. Labeled as weird, lazy, distracted, rude, cold, unloving, neurodivergents could not have their difficulties recognized or receive the support they needed.

That’s why the suicide rate of autistic men, with level 1 support – the one where people say “doesn’t even look autistic” (please don’t do that!) – is 9% higher compared to the neurotypical population. In women, that number rises to 13%.

“When we don’t have a name, we’re looking for an explanation for who we are and, usually, the learned answer is that the person doesn’t try hard enough. It never undergoes divergent neurological functioning. However, with the diagnosis, everything starts to make sense and the explanation for being who you are is found”, highlights Dr. Raquel. She remembers that, once, when giving the diagnosis to an adult patient, she asked if she would like to formalize her condition. The answer moves the doctor to this day: “no, I just wanted to make peace with myself”.

Published by Vida Simples Magazine.

By Luciana Fuoco

She is a journalist and mother of Sofia and Pedro. She has been studying neurodivergence to support her little boy diagnosed with autism.