Autism Through an Autistic Lens: A Photovoice Exploration of Autistic Adults’ Experiences in Navigating Perceived and Internalized Stigma

Abstract

Background:

Internalized stigma happens when people incorporate negative stereotypes into their self-concept. In research, some autistic people have shown internalized stigma, which has been associated with heightened psychological distress. Aligned with autistic people’s research priorities, this study investigated the impact of stigma and internalized stigma on autistic people’s lives and identities.

Methods:

We used the photovoice method, where people communicate their lived experience by taking photographs, and techniques of Interpretive Phenomenological Analysis, which focuses on in-depth individual narratives.

Findings:

Our findings emphasize the relational nature of stigma, highlighting autistic people’s resourcefulness in responding to and managing stigma in complex and context-sensitive ways. Autistic participants also drew on their focused interests and creative expression to actively resist and counter experiences of stigma.

Conclusion:

Future research should focus on targeting stigma among non-autistic people, and in exploring autistic people’s focused interests and creativity as a potential avenue for improving their well-being and fostering a positive identity.

Community Brief

Why is this an important issue?

Internalized stigma happens when people see themselves in a negative light because of others’ bad or false beliefs about them. Research shows that some autistic people have internalized stigma, and that this has bad consequences for their lives and well-being. Autistic people in Scotland have also told researchers that stigma and mental well-being are very important topics to investigate.

What was the purpose of this study?

We aimed to see if the way other people talked about autism and autistic people changed how autistic participants felt about life, about themselves, and about autism. We aimed to do this in a participatory way, meaning that autistic participants were actively involved in decisions about how the research was done.

What did the researchers do?

We did photovoice with six autistic people living in Scotland. This involved taking photos of their daily lives and talking about these photos in group meetings. We analyzed participants’ discussions using a technique called Interpretive Phenomenological Analysis, which looks at how participants make sense of their own lived experiences. We also showed participants’ photos in a community exhibit and hosted a talk at a local library to raise awareness of stigma within the local community.

What were the findings and conclusions of the study?

Stigma had a bad impact on participants’ lives, feelings, and sense of self. Stigma stopped some participants from finding out that they were autistic earlier. Participants also said that building a good sense of self after diagnosis was an ongoing process because of stigma. Participants dealt with stigma using different strategies, depending on which risks and consequences they predicted in each situation. Participants also told us that their interests, creativity, and sensory differences helped them find and express a more positive and true identity, and they used these as tools to defy stigma.

What is new or controversial about these findings?

Our findings show that the impact of stigma on how autistic people see themselves may be more complex than it appears. For example, choosing to hide autism is not necessarily a sign of a negative sense of self but may be a practical way to preserve energy and get through difficult situations. Participants’ use of personal interests and creative expression to challenge stigma is a new finding.

What are potential weaknesses in the study?

Many participants in this study had other traits that are also stigmatized (e.g., gay, nonbinary), making it difficult to know if the experiences they discussed were only because of autism or due to other parts of their identities. The use of photography may have excluded people who do not find this type of communication accessible or enjoyable.

How will these findings help autistic adults now or in the future?

This study helps us understand autistic people’s experiences of stigma, which is a topic that is important to their daily lives and affects their well-being. Based on our findings, future research should focus on shifting negative stereotypes of autism among non-autistic people and on exploring focused interests and creativity as ways to improve autistic people’s well-being and foster a positive sense of self.