For many years, February 18 was marked as International Asperger Syndrome Day. The condition’s name was changed in accordance with the new version of the International Classification of Diseases (ICD), which came into effect in 2022.
Now, the symptoms are included in the so-called Autism Spectrum Disorder (ASD), which brings together different manifestations that affect neurological development, present from birth or early childhood.
The diagnosis of autism is defined based on the level of severity, or according to each individual’s need for support. Three levels are considered: mild, moderate and severe.
In general, people previously associated with Asperger’s syndrome are considered autistic at level 1, mild. These individuals may have problems with social interaction, associated with difficulty understanding and expressing emotions, as well as gestures, facial expressions and other aspects of non-verbal language.
Sensory changes can make them perceive colors, sounds and smells more intensely, leading to greater sensitivity to noise and discomfort in crowded situations. Like other mental health conditions, autism spectrum disorders have different nuances from one person to another, which can delay diagnosis.
The report of CNN talked to people from different places to reveal the main challenges and difficulties faced in living with the disorder.
Neurodiversity Intolerance
At the age of nine, writer Kenya Diehl, 38, from Santos (SP), was diagnosed with autism.
“At that time, I couldn’t speak, I had a lot of sensory problems, I vomited a lot, I couldn’t sleep, I had a headache crisis, I wet the bed, all these developmental delay issues that led to the diagnosis”, he says.
According to Kenya, the condition of poverty and the mother’s option to hide the diagnosis from other people made living with the disorder even more difficult. The following years were even more difficult, until she sought expert help on her own at 17.
“My mom dumped me when I was 13. Alone, I went after the treatment, which started with medication and psychiatric follow-up. From there, my mind started to open up to more knowledge and things started to improve,” she says.
One of the main features of the autism disorder previously associated with Asperger Syndrome is the literal interpretation of speech and the difficulty in understanding emotions.
“They are not always able to understand their own emotions and the emotions of others. There is a rigid thinking to it, a literal interpretation of things and difficulty understanding metaphors, jokes and ironies. This makes the communication necessary to identify the subtleties of non-verbal language a little difficult”, explains Mariana Honorato Franzoi, a professor at the University of Brasília (UnB).
Kenya says that the turning point in the improvement of the clinical picture came at the age of 32, after a critical moment of humiliation suffered in a gym.
“All the personal training, teachers and students were bullying me and I didn’t understand, I laughed along with them. In fact, I was laughing at myself and didn’t know it. Until the moment I was asked if I was retarded, why didn’t I understand that they were laughing at me and that this was not the place for me,” she said.
She claims that she thought about taking her own life at that moment. However, in the car, on the way home, she saw her son’s car seat in the back seat and found the strength to continue.
“I saw that there was someone who needed me, that it was not just me in the world. So, I decided to isolate myself from the world and gave up on trying to be like others. Just as my mother didn’t accept the diagnosis, I didn’t accept it either. That day I understood that I would not be like anyone else, from there I started writing,” she said.
Author of three books on the subject, Kenya also acts as a digital influencer by talking openly about living with autism on Instagram. In the book “Autism is life – Inside my autistic brain”, she narrates her life story, the difficulties and abuse she suffered.
“I am a survivor of physical abuse, I suffered a lot from being abandoned. Because I didn’t understand people’s hints and intentions, I ended up being raped more than once. I wrote with the intention of preventing other autistic girls and even boys from suffering what I suffered. I told my life story so that the parents would be aware”.
She claims that negative experiences have transformed the way she seeks to insert herself into society.
“I understood that I could adapt to the world and that I would not be like other people. I started to preserve myself, knowing that certain places are not ideal for me. Sensory function can be impaired by too much noise, for example. Before I went to be like others, I no longer do things that hurt me and put me at risk,” she says.
Importance of sharing experiences
Journalist and researcher Tiago Abreu, 26, from Porto Alegre, was diagnosed with autism in 2015. He says that since school he had problems related to social interaction.
“This issue of difficulty in social interaction often translates into initiating friendships and especially maintaining them. People who are in this ‘mild’ part of autism do not have cognitive deficits, so they are able to interact and go unnoticed socially. It’s just that, often, they make gaffes, they have a lack of perspective of what the other expects ”, she says.
According to the journalist, the diagnosis was an important part of the understanding of autism disorder. “Since then, I became a person more interested in the subject, I started studying and researching autism from the beginning of my graduation and now in my master’s degree”, he says.
In this process, Abreu also highlights the sharing of experiences with other autistic people.
“This contact with other people who had the same diagnosis was something very positive. We started working on projects together that still exist today. Autism is a very variable diagnosis from the point of view of experience. One of the biggest difficulties I see in people on the autism spectrum is identifying what is an individual’s personality and what is autism,” she said.
Today, the journalist has a podcast called Introverting, with weekly episodes on topics related to neurodiversity and living with autism. He has also just released the book “What is neurodiversity?”, published by Cânone Editorial. In addition to the historical context of the concept, the work brings together social repercussions, criticisms and perspectives on the use of the term in Brazil over time.
“Neurodiversity is basically a parallel with the idea of biodiversity. Just as there is diversity among animals, among human beings we have a diversity of brains, in the way of thinking and acting, and that is even important for the quality of humanity”, he explains.
According to Abreu, discussions about the importance of inclusion have expanded in recent years, especially in the context of social networks.
“Overall, people recognize that inclusion and respect for difference is important. The thing is, most people don’t know how to do this in practice. This is one of the biggest challenges and the autism community itself needs to develop strategies to try to respond to this, which involves several areas that often do not dialogue with each other”, he says.
Excessive focus on subjects
Conversations that revolve around themselves or a certain topic and an exaggerated focus on a specific subject are also characteristics associated with this autism spectrum.
“There is the issue of very specific and intense interests, a characteristic of being interested in something unusual and having a hyperfocus on it. Some really love science, astronomy, insects, and they go very deep into it, to the point that, sometimes, this hyperfocus becomes a skill”, explains Mariana.
History teacher Rafael Alves Viana, 38, from São Paulo, says that since childhood he focused on the search for knowledge about football. From adolescence to adulthood, historical content became the target of his preference – which motivated his choice for the profession.
“You create too much interest and it ends up becoming a daily routine of researching that specific subject or subjects. It’s something that doesn’t match up a lot, in this matter of hyperfocus, it’s an exaggerated interest on your part”, says Rafael.
According to him, the interest and hyperfocus on specific topics ends up reflecting in conversations with family and friends. “People around people living with the disorder need to know this and be careful about it,” he says.
Socialization problems and difficulties in performing everyday tasks led the teacher to seek specialized care. The diagnosis was confirmed in 2013, after psychological follow-up and referral to other specialists.
“I began to understand why things considered common and commonplace were so difficult for me, such as group activities, parties and events, for example”, he says.
Even today, he is faced with difficulties in understanding expressions and metaphors beyond the literal context. “Over time, you learn to deal with it and keep that expression in your memory. By the time it’s used in a context, you’ll remember that it doesn’t mean its literal meaning,” he says.
prevalence of autism
The World Health Organization (WHO) estimates that one in 160 children has autism spectrum disorders. Precise data from this scenario in Brazil come up against the lack of studies on the prevalence in the population.
Researcher Aline Abreu e Andrade, from the Brazilian Society of Psychology, points to a significant increase in the prevalence of autism spectrum disorder.
In the United States, the most recent survey by the Centers for Disease Control and Prevention, carried out in December, indicated a prevalence of 1 case for every 44 children.
According to the expert, there is no clear definition of the reasons for the increase in case notification. “It is not known if there is a hyperdiagnosis or if there is some environmental variable that is affecting the increase in the prevalence of autism cases. The fact is that there has been a change in the level of specificity of the diagnosis, which is more comprehensive today than it was a while ago,” she says.
Name origin
The condition formerly described as Asperger Syndrome alluded to the Austrian physician Hans Asperger, who first described the condition. Even before the changes in the International Classification of Diseases came into effect, there were already discussions about changing the name of the clinical condition.
A study, published in the journal Molecular Autism in 2018, pointed out that the doctor had collaborated with the Nazi regime. The documents obtained by the Austrian researcher Herwig Czech point out that Asperger legitimized racial hygiene policies.
According to the article, Asperger managed to accommodate himself to the Nazi regime and was rewarded for his claims of loyalty with career opportunities. Although he was not part of the Nazi party, he joined several organizations affiliated with the NSDAP and publicly legitimized racial hygiene policies.
The analysis was based on a wide range of contemporary publications and hitherto unexplored archival documents, including Asperger’s personal archives and the clinical assessments he wrote on his patients.
Source: CNN Brasil
