“I've Spent My Whole Life Striving to Be Normal”: Internalized Stigma and Perceived Impact of Diagnosis in Autistic Adults

Abstract

Background:

Receiving an autism diagnosis in adulthood often leads to improved self-understanding and deeper self-reflection, which can have major impacts on people's well-being and sense of identity. However, autism diagnosis also exposes individuals to societal stigma, which may become internalized over time. This study aimed to explore relationships between psychological and service-related impacts of diagnosis and internalized stigma using mixed methods.

Methods:

One hundred forty-three autistic adults completed an online survey involving impact of diagnosis domains of Self-Understanding, Well-being, Clinician Support, and Service Access, internalized stigma, and open-ended questions on beliefs about autism diagnosis.

Results:

On average, participants reported mild levels of internalized stigma and positive impact of diagnosis in all domains except Service Access. Older age at diagnosis was positively associated with Clinician Support only. The path analysis model showed positive relationships between impact of diagnosis domains, with Self-Understanding having a positive effect on Well-being via lowered internalized stigma. We developed four themes of Continuity and Acceptance, Late Diagnosis as Regret and Freedom, Coming to Terms with Being Autistic, and Stigma Resistance from qualitative data.

Conclusions:

Self-understanding protects against the development of internalized autism stigma. Diagnosticians and service providers play an important role in improving self-understanding and well-being in autistic adults. More research is needed to understand the role of age at diagnosis and mechanisms behind positive identity development after autism diagnosis.

Community brief

Why is this an important issue?

Receiving an autism diagnosis in adulthood can help people understand themselves better. This can help them feel better too. Autistic adults' experiences during diagnosis and their experience with support services after diagnosis might also affect how they think and feel about themselves. There are many negative beliefs about autism in society. Some autistic people might think more negatively about themselves because of these beliefs.

What was the purpose of this study?

This study tries to understand relationships between the impact of autism diagnosis and negative beliefs about autism in autistic adults. We also wanted to know if age at diagnosis is related to these factors.

What did the researcher do?

One hundred forty-five autistic adults filled in an online survey. We asked questions about the impact of autism diagnosis on four aspects: how they understand themselves, their well-being, experiences with the professional who gave the diagnosis, and support services after diagnosis. We also asked questions about autistic adults' negative beliefs about autism. We used the answers to these questions to test a model of how we think these factors might affect each other: good experiences with the professional who gave the diagnosis help with self-understanding and getting support services. Better self-understanding helps autistic adults think less negatively about autism. Better self-understanding, less negative thinking about autism, and better support services all help improve well-being after diagnosis.

We asked autistic adults some general questions about the effect of autism diagnosis on their lives. We asked autistic adults whether they think being diagnosed at an older or younger age made a difference. We also asked autistic adults about negative beliefs that some autistic people might have about their autism. We then read these answers and made a list of the important and common ideas in people's answers.

What were the results of the study?

In general, autism diagnosis improved autistic adults' self-understanding and well-being. Most autistic adults had good experiences with the diagnosing professional but did not have good support services after diagnosis. On average, autistic adults had a small amount of negative beliefs about autism. People diagnosed at older ages had better support from the health professional who diagnosed them. We did not find any other differences between people diagnosed at different ages. We successfully tested our model of relationships between self-understanding, well-being, experiences with the diagnosing professional, experience of support services, and negative beliefs about autism.

Autistic adults said getting the diagnosis did not change who they are. It helped them understand and accept themselves. Some late-diagnosed autistic adults wished they were diagnosed earlier. Others said being diagnosed younger might make you think less of yourself because there was less autism acceptance in society at that time. Both early-diagnosed and late-diagnosed autistic adults said growing older helped them understand what it means to be autistic. Autistic adults also talked about autistic and non-autistic people's negative beliefs about autism. Some autistic adults said that negative beliefs are caused by society not being accepting enough, not because autism itself is bad. This thinking helps autistic adults think more positively about autism.

What do these findings add to what was already known?

This is the first study to measure and develop a model of the relationships between impacts of diagnosis and negative beliefs about autism in autistic adults.

What are potential weaknesses in this study?

Most people who did our survey were diagnosed as teens and adults. It was hard to measure the effects of age at autism diagnosis because we did not have enough participants diagnosed at young ages. The people who did our survey were mostly female, White, spoke English only, and did not have intellectual disability. This means that the people in our study are not a good representation of all autistic adults in Australia. The questions we used to measure negative beliefs about autism were originally made for people with mental illness. There might be negative beliefs specific to autism that we did not measure.

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

Our findings tell professionals who diagnose or support autistic adults that it is important to help autistic adults understand what it means to be autistic in a positive way. This will help autistic adults form more positive beliefs about autism and live happier lives.