Learning about autism from those who live on the spectrum through online forums

A group of researchers from the Department of Psychology and Cognitive Science of the University of Trento, together with colleagues from US and British universities and departments, delved into the world of people with autism through their conversations, learning about their interests, the topics they discuss, their needs, tastes, experiences. They worked from the ground up, examining discussions and narratives to shed light on things that usually remain unknown to outsiders.

The results of their work are described in a paper published in Autism Research titled “Autism Spectrum Disorders Discourse on Social Media Platforms: A Topic Modeling Study of Reddit Posts.”

They examined more than 700,000 posts from all over the world that were published anonymously on Reddit in discussion forums on autism. A huge amount of data that the researchers analyzed with natural language processing techniques has made it possible to group writings using macro-themes and thematic content.

The researchers found that among the recurring topics in these forums are music, favorite foods, and social life. In fact, some ask for suggestions on how to make friends, while others talk about musical preferences or eating habits. In general, the participants have a supportive attitude towards each other.

The results of this study offer an unprecedented look at the online conversation on autism, which calls on a different approach to neurodivergence, one that doesn’t view it as a disadvantage but rather values differences.

Gianluca Esposito, the author of the study, explains in this regard: “These discussions do not point to a disability, but highlight a different way of understanding and interpreting the world. These people share personal experiences, where these are not necessarily interpreted in a negative way. The focus is on neurodiversity, not on a disorder.”

In recent years, much has been written and said about autism, often underlining its symptoms and difficulties. But what emerges from this work is different. “We started from the analysis of spontaneous daily life posts to investigate what are the most recurrent topics of discussion and what are, potentially, the more or less functional strategies that people put in place to cope with challenges,” says Esposito.

“It is important to understand that autism is not a cognitive disability. Many people still believe this stereotype, but years of research and clinical practice demonstrate that this is not always true.

“There are a number of neurodiversities which must not be understood as a set of difficulties but as a set of individual identities: a variety of ways of thinking and perceiving the world that can offer valuable contributions to society and enrich our understanding of human functioning.”

It is important to note, as the article reads, that the discussions among the participants also reflect a deeper challenge: an effort to tune one’s interpersonal feelings and emotions with external social norms. They somehow would like to mute the desire for authenticity in contexts where societal expectations might require masking or adapting behaviors.

This is highlighted by Alessandro Carollo, one of the authors of the work: “One aspect that impressed me a lot is to see people with autism suffer and struggle when they are forced to conform to neurotypical standards. The difficulty is not so much related to what we think is a symptom of neurodivergence but to the request to standardize, to mask their identity in favor of what is considered a neurotypical behavior.”

What will be the clinical impact of this study?

“The collected data—clarifies Carollo—can help design educational actions to address the real concerns of people with autism, that must be taken into account in general and that may not always emerge during therapy or more conventional research protocols.”

A group of researchers from the Department of Psychology and Cognitive Science of the University of Trento, together with colleagues from US and British universities and departments, delved into the world of people with autism through their conversations, learning about their interests, the topics they discuss, their needs, tastes, experiences. They worked from the ground up, examining discussions and narratives to shed light on things that usually remain unknown to outsiders.

The results of their work are described in a paper published in Autism Research titled “Autism Spectrum Disorders Discourse on Social Media Platforms: A Topic Modeling Study of Reddit Posts.”

They examined more than 700,000 posts from all over the world that were published anonymously on Reddit in discussion forums on autism. A huge amount of data that the researchers analyzed with natural language processing techniques has made it possible to group writings using macro-themes and thematic content.

The researchers found that among the recurring topics in these forums are music, favorite foods, and social life. In fact, some ask for suggestions on how to make friends, while others talk about musical preferences or eating habits. In general, the participants have a supportive attitude towards each other.

The results of this study offer an unprecedented look at the online conversation on autism, which calls on a different approach to neurodivergence, one that doesn’t view it as a disadvantage but rather values differences.

Gianluca Esposito, the author of the study, explains in this regard: “These discussions do not point to a disability, but highlight a different way of understanding and interpreting the world. These people share personal experiences, where these are not necessarily interpreted in a negative way. The focus is on neurodiversity, not on a disorder.”

In recent years, much has been written and said about autism, often underlining its symptoms and difficulties. But what emerges from this work is different. “We started from the analysis of spontaneous daily life posts to investigate what are the most recurrent topics of discussion and what are, potentially, the more or less functional strategies that people put in place to cope with challenges,” says Esposito.

“It is important to understand that autism is not a cognitive disability. Many people still believe this stereotype, but years of research and clinical practice demonstrate that this is not always true.

“There are a number of neurodiversities which must not be understood as a set of difficulties but as a set of individual identities: a variety of ways of thinking and perceiving the world that can offer valuable contributions to society and enrich our understanding of human functioning.”

It is important to note, as the article reads, that the discussions among the participants also reflect a deeper challenge: an effort to tune one’s interpersonal feelings and emotions with external social norms. They somehow would like to mute the desire for authenticity in contexts where societal expectations might require masking or adapting behaviors.

This is highlighted by Alessandro Carollo, one of the authors of the work: “One aspect that impressed me a lot is to see people with autism suffer and struggle when they are forced to conform to neurotypical standards. The difficulty is not so much related to what we think is a symptom of neurodivergence but to the request to standardize, to mask their identity in favor of what is considered a neurotypical behavior.”

What will be the clinical impact of this study?

“The collected data—clarifies Carollo—can help design educational actions to address the real concerns of people with autism, that must be taken into account in general and that may not always emerge during therapy or more conventional research protocols.”