Identifying as Autistic Without a Formal Diagnosis: Who Self-Identifies as Autistic and Why?

Abstract

Background:

Adults increasingly self-identify as autistic without a formal diagnosis, yet little research has systematically investigated (a) the unique characteristics, experiences, and needs of self-identifying adults and (b) their preferences regarding diagnosis. Understanding the unique needs and preferences of self-identifying adults is necessary to better support them.

Method:

We conducted a cross-sectional, mixed-methods study of U.S. autistic adults who either self-identified as autistic (n = 147) or had a formal autism diagnosis (n = 115), recruited via the survey platform Prolific. Participants were compared on (a) demographic characteristics, (b) autistic traits and experiences, (c) psychosocial outcomes, (d) support needs, and (e) beliefs about autism. Moreover, self-identifying participants reported whether they wanted a diagnosis, why or why not, and what barriers they faced.

Results:

Self-identifying autistic adults were similar to diagnosed adults in autistic traits, including diagnostic traits (>93% of both groups scored ≥14 on the Ritvo Autism and Asperger Diagnostic Scale-14 Screen). However, self-identifying autistic adults differed from diagnosed adults in significant ways. Self-identifying adults were more likely to be cisgender female (53.5% vs. 27.0%), experienced worse mental well-being (d_s = −0.41), were more likely to experience unmet support needs (71.4% vs. 47.0%), and faced unique barriers to receiving support (most frequently a lack of resources). The majority (68.7%) of self-identifying adults wanted a formal diagnosis but faced barriers in doing so. Self-identifying adults named a number of reasons for wanting a diagnosis (e.g., validation, access to certain services), but also grounds for hesitation (e.g., fear of stigma and discrimination).

Conclusion:

Adults who self-identify as autistic are similar to diagnosed adults in their autistic traits but face more barriers to accessing services and may be uniquely vulnerable to experiencing adverse psychosocial outcomes. Psychosocial outcomes in self-identifying autistic adults may be improved by increasing access to diagnosis and/or psychosocial services.

Community Brief

Why is this an important issue?

More and more people are self-identifying as autistic without a formal diagnosis. However, we don’t know much about who is self-identifying as autistic, what their experiences are, what needs they have, and whether they want an autism diagnosis. Getting a better understanding of self-identifying adults’ perspectives could help us better support their needs.

What was the purpose of this study?

This study compared the perspectives and needs of self-identifying and formally diagnosed autistic adults. More specifically, we wanted to understand who was self-identifying as autistic, what their experiences were as autistic people, what needs they had, their views on autism, and how those things were similar or different from autistic adults with formal diagnoses. We also wanted to understand if self-identifying autistic adults wanted an autism diagnosis and why (or why not)—and if they did, what barriers kept them from getting one.

What did the researchers do?

We surveyed U.S. autistic adults who self-identified as autistic and autistic adults who had a formal autism diagnosis. Participants were recruited on the online survey platform Prolific. We asked participants about their backgrounds, autistic traits, experiences, mental health and well-being, support needs, and beliefs about autism. We compared the experiences of self-identifying autistic adults to those of adults who had a formal diagnosis. We also asked self-identifying autistic adults if they wanted an autism diagnosis and about barriers to diagnosis.

What were the results and conclusions of the study?

Self-identifying autistic adults were very similar to formally diagnosed adults in their autistic traits. Self-identifying autistic adults more often identified as cisgender female, had worse mental well-being, and had more unmet support needs. Most self-identifying adults wanted an autism diagnosis but faced challenges doing so. The most common barrier to diagnosis and services was a lack of resources (e.g., financial).

What is new or controversial about these findings?

We already knew that self-identifying autistic adults often encountered barriers when seeking a diagnosis, but we didn’t know much about their general mental health and well-being or about the barriers they face when it comes to accessing supports. We also did not know that most self-identifying adults want a diagnosis. This is the first study to report greater unemployment, worse mental well-being, and greater unmet support needs among self-identifying autistic adults.

What are potential weaknesses in the study?

Like other online studies, our participants aren’t representative of all autistic adults. Study participants often learned about their autism diagnosis or identity later in life and were more likely to be employed than autistic adults in the general population. Also, the sample is based in the United States and may not reflect experiences in non-Western cultures.

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

Our findings are a call to action for supporting the unique needs of self-identifying autistic adults. The findings may help clinicians and policymakers better understand how to support self-identifying adults’ needs.