The neurodiverse picnic in Lima is liberating Peruvians of stigma and abuse.

Mar 13, 2024 | News

In Peru, neurodivergent people have a hard time adjusting to their new identities. People with bipolar disorder and other disorders, such as ADHD and autism, are now organizing picnics to push for change in the government.

Carolina Diaz Pimentel, the capital city of Peru, pulls some red and green tape from her backpack on a sunny summer afternoon. She is waiting in a park for guests to arrive at the picnic that she and her friends have organized. Guests are aware that they do not have to be punctual, they do not have to make eye contact, and they can leave at any moment if they feel overwhelmed. No one will ask them.

“We want everyone to feel comfortable. We want to break the rules that are imposed every day on neurodivergent individuals to fit in, says Diaz Pimentel. Diaz Pimentel is a journalist who is also autistic with bipolar disorder.

The tapes are colored. Each attendee can choose one to represent their “social battery”. If they choose green tape, they are indicating that they want to take part in the activities. Red indicates that they do not want to be approached. Everyone wants company. That’s why everyone is here, but they do it in different ways. It’s okay; people start to arrive. Several people choose red.

 CNP is an initiative that was launched in March 2023. The alliance is made up of five neurodivergent females who have been making waves on social media by sharing their experiences. But they wanted to see real-world changes. “I was used to seeing this type of gathering in countries such as Mexico and Argentina and was sad that I was so far away. Until I saw the announcement for a picnic in Peru. Before joining the coalition, I didn’t relate to anyone. I had good friends and people who cared about me, but I was aware that I wasn’t the same as them,” Mayra Orellano, another director, an interior designer with BPD ).

Today marks the fifth meeting of the coalition. CNP’s picnic may not seem like a fertile ground for a growing social movement. But behind the bags and crisps of cookies, they are fighting for the rights of the neurodivergent Peruvians, to be understood, accepted, and live free of stigma and abuse.

The birth and development of the neurodiversity Movement

Judy Singer, an Australian who is now a renowned sociologist, first coined the term neurodiversity in 1997 as part of her undergraduate thesis. Singer, an Australian sociologist who is now a leading authority on the subject, argues that conditions like autism, dyslexia, and Attention Deficit/Hyperactivity Disorder (ADHD), are simply a part of how our brains are wired. Her thesis argued that neurodiverse individuals are worthy of society’s acceptance. It offered a new perspective on human differences and gave a name to a growing movement. It is still a concept few in Peru have heard.

Diaz Pimentel says, “Neurodiversity does not represent a medical diagnosis. It is a political movement which brings us together in order to defend our rights.” In 2017, when she began posting about her bipolar illness on social media, it was taboo. Very few people talked about their diagnosis publicly. Bipolar disorder is still a stigmatised illness in Peru. Bipolar disorder is stigmatised in Peru. Most people believe that bipolar people are complicated and incapable of making decisions. A popular Lima shoe store named after the disorder typifies this attitude: it refers to having a pair ‘for all moods ‘.

Carolina Diaz shared this image on Facebook to celebrate her autism diagnosis. Credit: supplied

Diaz Pimentel says that her commitment is stronger than any prejudice. She posted a picture of herself two years ago when she was diagnosed with autism. The words ‘Congratulations on the Autism’ were written in white icing. She wanted to share her joy with her community, because she saw it as a rebirth. At 29, some of her childhood puzzles finally made sense.

The picnic has begun. 30 young people with neurodiverse traits are enjoying apple pies and lollipops under the Peruvian sunshine. Some people tell personal stories to break the ice. Some people squeeze or pull fidget toy. Many laugh when they realize that they aren’t the only ones who carefully monitor whether they have already spoken too much about the topic. “I am always careful to not tire people out or appear too weird,” says a young woman with an anxious expression. Here, people bond based on their unique behavioural traits. When they leave, it will be difficult to hide their distinctive traits.

From picnics and influencing policy

Neurodivergence covers a wide range of conditions. This causes confusion in Peru and a lack accurate data. The National Registry of Citizens with Disabilities includes 15,000 people with autism. But according to international statistics on the worldwide prevalence of autism, there are likely

Maria Coronel is the psychologist who heads the department of child and adolescent health at the Ministry of Health. She says that the institution’s priority is to clarify these data. She acknowledges the importance of initiatives like CNP in educating people: “These organizations add to our efforts to identify people on the autism spectrum and provide them with the help they require.” They are able to reach out to others because they share their own experiences .”

A neurodiverse picnicker squeezes a fidgety toy to calm down her nerves. Credit: Angela Ponce

CNP is only a year old, but it has already had a significant impact on government policy. Two congressmen asked members for feedback on bills that would protect the rights of autistics. The state agency responsible for integrating people with disabilities in society consulted with them about the correct terms to use to describe neurodevelopmental conditions. The ombudsman’s office also made a video to warn against gender bias in early autism detection. In Peru, 81% are men. )

CNP is especially concerned about what happens to someone after they are diagnosed. Even at the highest level of medicine, attitudes in the country are decades behind western standards. A neurologist from Peru’s largest public hospital and the head of paediatrics gave a speech at an event celebrating World Autism Day 2023 in Peru’s Parliament. He spoke about the importance of teaching people with autism to make eye-contact. This was, according to him, a crucial factor in teaching them how to behave like the rest of us. He said that ‘they needed us’ to refer to neurotypical people so they could “imitate” us.

Autistic people may have difficulty maintaining eye contact due to a sensory overload in their brains. It’s not surprising that the majority of therapies available in Peru for neurodivergent individuals are aimed at modifying or controlling socially unacceptable behaviors. Many of these ‘externalizing behaviours’, such as flapping arms or full body shaking, are biological mechanisms of the nervous systems trying to regulate themselves.

We want everyone to be comfortable at the picnic, to break away from the rules that neurodivergent individuals are forced to follow every day in order to fit in.

CNP receives complaints from parents regarding treatments that include violence in order to make neurodivergent kids more “functional”. Psychologists forcefully hold children’s mouths to “learn” them to look at their eyes, or pour water on their clothing to “get used” for bodily sensations.

More people are now asking for help, as the coalition has become more well-known. New ways to address the needs of the neurodivergent group are emerging thanks to their ongoing activism. CNP was contacted by the mother of a child with autism who lives four hours away from Lima. In her town, neurodivergent kids struggle with the fireworks that are often set off during Peru’s many festivals. She says she went to the local city hall and health centre but received no response. The CNP organised a donation of 11 noise-cancelling devices.

Alejandra Montoya is a CNP cofounder with ADHD. She is a teacher, psychologist, and helps neurodiverse individuals improve their executive functions. For example, she helps them remember instructions or follow a schedule. In her practice, she does not force anyone to stare into her eyes, or stay still in a chair, for example, when they don’t wish to. She knows that the brain has different ways to pay attention and gather information.

“Neurodivergents spend their lives adapting to the society. We seek help and therapy for this reason. We deserve that schools, workplaces, and cities adapt to us. “Meet us in the middle,” she says. CNP’s main goal is to make society aware of the needs of people with atypical minds.

In Lima, Peru: Carolina Diaz (31) Alejandra Montoya (30), Lucia Herrera (33), and Mayra Oellano (31) are the founders of Coalicion Neurodivergent Peru. Credit: Angela Ponce

Creating an increasingly sensitive society

Diaz Pimentel acknowledges that the CNP community’s work has not been enough. Some experts agree that the problems are structural and societal. “In Peru, we have a shortage of specialised human resources. We need more psychiatrists and neuro-paediatricians. “We need more young people to choose careers in these fields,” says Coronel.

The community has also been criticized by autistic groups and tabloids, who accuse members of inventing diagnosis and wanting to take away resources from “really handicapped” people. “The state is willing to learn about neurodiversity, but unfortunately, this divide is growing between those that see autism as a disorder and those that consider it a way of life – not better or worse, only different. This fight can set us all back,” says Natalie Espinoza an environmental engineer with BPD and autism.

Espinoza, a CNP co-founder and mother is the only founder. She has a daughter who is autistic and is five years old. It was difficult to find a pre-school which would accept her. Espinoza has experienced this kind of rejection. She was fired from a previous job when it was discovered that she had BPD. She says she had always performed well but was told by her employer that someone “on this kind of medication” couldn’t work with them.

Mayra Orellano, (L) and Alejandra Monteoya, (R), cofounders of the Coalition Neurodivergent Peru CNP (CNP), led a workshop during the picnic meet-up. Credit: Angela Ponce

“When I learned that my daughter is autistic, I did not mourn or deny, but only wanted to hug her tight because I was afraid of what the society would do to her. Espinoza says, “I would like for her to grow in a more sensitive environment.” She can contribute to this change by dedicating time to the work of the coalition. Currently, its communications reach over 12,000 people. It has 15 WhatsApp groups. Messages flying back and forth assist their community with everything from getting diagnosis to finding places to stay in the event that they are evicted.

What does the coalition want? Lu Herrera, an attorney with BPD and fifth co-founder, says: “We want everything.” They would like to create a “neurodivergent home”, a place to offer shelter to victims, run educational workshops and organise neurodiverse entrepreneurial fairs, as well as provide legal advice about inclusion rights. “Everything we do already but in our own space.

Herrera asks herself, “You know what we want to do with that house?” “We would like to have mindfulness sessions and dance lessons. Activities that ground us. We neurodivergents are so busy that we would love to have a place where we can rest .”

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


Images: Angela Ponce

The Solutions Journalism Accelerator, a program of the European Journalism Centre funded by Positive News, produces Developing Mental Wealth. This fund is supported in part by the Bill & Melinda Gates Foundation.

 

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