On a bright summer afternoon in Lima, the capital of Peru, Carolina Díaz Pimentel takes some red and green tape out of her backpack. She’s in a park waiting for people to arrive at a picnic she and her friends are hosting. Guests know that they don’t have to be on time, don’t have to make eye contact, and can leave at any time if they feel overwhelmed. No one will question them.

“We want everyone to feel comfortable. At least this afternoon we want to take a break from the rules that are imposed on neurodivergent people every day to fit in,” says Díaz Pimentel, a journalist and a co-founder of the Peruvian Neurodivergent Coalition (CNP), who is herself autistic and has been diagnosed with bipolar disorder.

Hence the coloured tapes. Each attendee will choose one to express their “social battery”. If they choose the green tape, it’s because they want to participate in the activities. Red signals they prefer not to be approached. Everyone wants company, that’s why they are here, but in different ways. And that’s OK. People start to arrive. Several choose red.

CNP is a social initiative that first kicked off in March 2023. It is the alliance of five neurodivergent women who were already making waves by posting openly about their conditions on social media, but who longed to make real-world change. “I used to see this kind of gathering in countries like Mexico and Argentina and was sad to be so far away, until I saw the announcement of a picnic in Peru. Before joining the coalition, I didn’t really relate to anyone. I had good friends, people that care about me, but I knew I wasn’t like them,” says Mayra Orellano, another of the directors, an interior designer with borderline personality disorder (BPD).

Today is the coalition’s fifth gathering. A picnic may not sound like fertile ground for a burgeoning social movement, but behind the bags of cookies and crisps, that is what CNP is doing – campaigning for the rights of neurodivergent Peruvians to be understood and accepted, and to live free from stigma and abuse.

The birth of the neurodiversity movement

The concept of neurodiversity has been around for almost 30 years after first being coined in 1997 in an undergraduate thesis by Judy Singer. Singer, an Australian who is now an eminent sociologist, argued that conditions such as autism, dyslexia and Attention Deficit Hyperactivity Disorder (ADHD) are all simply part of the myriad ways in which human brains are wired. Neurodiverse people are therefore, her thesis insisted, worthy of acceptance by society. It proposed a new way to think about human difference and provided a name for a burgeoning movement. In Peru, however, it remains a concept that few have heard of.

“Neurodiversity is not a medical diagnosis, it’s a political movement that brings us together to defend our rights,” says Díaz Pimentel. When she first started posting about her bipolar disorder on social media in 2017, it was taboo: very few talked about their diagnosis in public. Bipolar disorder remains a stigmatised condition in Peru. Most believe people with bipolar are just complicated and unable to make decisions. The attitude is typified by a popular Lima footwear store that is named after the condition: its name alludes to having a pair of shoes ‘for all your moods’.

Diaz Pimentel’s commitment is stronger than prejudice, she says. Two years ago, when she received her autism diagnosis, she posted a photo of herself holding a rainbow cake with the words ‘Congrats on the autism’ spelled out in white icing. She wanted to celebrate with her community because she considered it a rebirth: at the age of 29, some of the puzzles of her childhood finally made sense.

 The picnic is now in full swing, and 30 young neurodiverse people are enjoying lollipops and apple pies under the Peruvian sun. To break the ice, some tell personal stories. Others squeeze or pull fidget toys. Many laugh when they discover that they are not the only ones to closely monitor whether or not they have already talked too much about the same topic. “I’m always careful not to tire people out or seem too weird,” says one young woman with a nervous expression. Here, people bond over their distinctive behavioural traits. When they leave, they will feel required to hide them.

From picnics to influencing policy

Neurodivergence is a huge umbrella that describes people with very different conditions. In Peru, this causes confusion and a lack of accurate data. Even in the case of autism, the best recognised of the neurodivergent conditions, the National Registry of Citizens with Disabilities lists some 15,000 people on the spectrum. But according to international statistics on the worldwide prevalence of autism, there are likely more than 200,000 people with the condition in the country. 

María Coronel, the psychologist in charge of the ministry of health’s child and adolescent mental health department, says that clarifying this data is one of the institution’s priorities. She acknowledges that initiatives such as CNP’s can help educate people: “These organisations add to our efforts to detect people on the autistic spectrum and give them the help they need. They have a great ability to reach others because they are telling their own experiences.”

Although CNP has only existed for a year, the group is already influencing government policy. Two congressmen have asked for members’ feedback on bills to protect the rights of autistic people. The state agency in charge of integrating people with disabilities into society consulted them on the appropriate terms with which to refer to neurodevelopmental conditions. And the ombudsman’s office made a video with them to warn about gender bias in autism early detection. (In Peru, 81% of people receiving treatment are male.)

CNP is particularly concerned about what happens after someone is diagnosed. Even at the highest levels of medicine in the country, attitudes remain decades behind those in the west. At an event for World Autism Day 2023 held in Peru’s parliament, a neurologist and head of paediatrics at Peru’s biggest public hospital gave a speech about the importance of teaching autistic people to make eye contact. For him, this was a key factor in training them to behave like everyone else. He said ‘they needed to see us’, referring to neurotypical people, so they could “imitate us”. 

Studies show that autistic people can find it hard to hold eye contact because their brains experience a sensory overload. It’s no surprise that most of the therapies available for neurodivergent people in Peru seek only to modify or control socially unacceptable behaviours. Despite the fact that many of these ‘externalising behaviours’ – such as flapping hands or full body rocking – are simply biological mechanisms of the nervous system trying to regulate itself. 

At the picnic we want everyone to feel comfortable, to take a break from the rules that are imposed on neurodivergent people every day to fit in

CNP hears complaints from parents about treatments that include violent practices that promise to make neurodivergent children more “functional”. There are psychologists who forcefully hold children’s jaws so they “learn” to look into their eyes or who pour water on their clothes so they “get used” to tolerating bodily sensations. 

Now that the coalition is better known, more people are approaching it for help. Thanks to the ongoing activism of the neurodivergent community, new ways of addressing its needs are emerging. Recently, the mother of an autistic child who lives four hours from Lima got in touch with CNP. In her town, a group of neurodivergent children struggle with the frequent fireworks celebrations that are set off during Peru’s many festivals. She went to the city hall and health centres in her area but says she received no response. The CNP organised a collection and donated 11 noise-cancelling hearing aids.

Alejandra Montoya, a CNP co-founder who has ADHD, is a teacher and a psychologist who helps neurodiverse people to improve their executive functions, such as remembering instructions or following a schedule. In her practice, she doesn’t force anyone to look into her eyes or to stay still in, for example, a chair if they don’t want to. She knows that brains have different ways of gathering information and of paying attention.

“Neurodivergent people spend our lives adapting to society. That’s why we go to therapy, we seek help. The least we deserve is that schools, workplaces and cities make an effort to adapt to us as well. Meet us in the middle,” she urges. That is one of the main CNP goals: to raise awareness of the characteristics of people with atypical brains so that society understands what they really need.

Creating a more sensitive society

The CNP community says its work has changed their own lives, but Díaz Pimentel recognises that it isn’t enough. Some experts agree – that the problems are as much structural as they are societal. “In Peru we have a gap in specialised human resources. We need more psychiatrists and neuro-paediatricians. We need more young people to choose these careers,” says Coronel. 

The community has also received criticism from autistic groups and tabloid media, who have accused members of inventing diagnoses and wanting to take resources away from “really disabled” people. “There is a willingness of the state to learn what neurodiversity is, but unfortunately this division is growing between those who see autism as a disease and those who consider it a type of life, no better or worse, just different. That fight can set us back,” says Natalie Espinoza, an environmental engineer who is autistic and who has BPD.

Espinoza is also a CNP founder and the only founder who is a mother. She has a five-year-old autistic daughter. Finding a pre-school that would accept her was very difficult. Espinoza is familiar with that kind of rejection. At a former job, she was fired when they found out she has BPD. She had always performed well, she says, but she was told that a person “on that kind of medication” could not work with them.

“When I found out that my daughter was autistic, there was no mourning or denial, just a desire to hug her tightly because I felt very afraid of what society might do to her. I would like her to grow up in a more sensitive place,” says Espinoza. Dedicating time to the coalition’s work is her way of contributing to that change. Currently its communications reach more than 12,000 people and it has 15 WhatsApp groups. Messages whizzing back and forth help their community in everything from getting diagnoses to finding places to sleep in the event of being evicted from their homes.

So what does the coalition want next? “We want it all,” says Lú Herrera, a lawyer with BPD and the fifth co-founder. They would love to create, for example, a “neurodivergent house”, a place where they can offer shelter to victims of violence, run educational workshops, organise neurodiverse entrepreneurship fairs and provide legal advice on inclusion rights.  “Everything we already do but in a place of our own. 

“You know what else we want to do in that house?” asks Herrera as if reminding herself. “We want to have mindfulness sessions, dance lessons, pottery classes. Activities that will ground us. We neurodivergents struggle so much every day that it would be nice to have a place to rest.”

For now, the picnics are opportunities to recharge, ready for the next conversation-shifting step.

Images: Angela Ponce

Developing Mental Wealth is a series produced by Positive News and funded by the European Journalism Centre, through the Solutions Journalism Accelerator. This fund is supported by the Bill & Melinda Gates Foundation