Understanding Autistic Identity Disclosure in Higher Education

Abstract

Background:

As autistic students enter postsecondary education, they must decide if and when to disclose their autistic identities. The existing literature on this topic either focuses on students with disabilities more broadly or is not the exclusive focus of the study. Given the need to disclose in order to receive accommodations and the inherent risk involved in disclosing a marginalized identity, it is imperative to understand what factors lead to an autistic college student’s willingness to disclose.

Methods:

After an extensive literature review on disclosure, we created a survey to better understand autistic college students’ disclosure thoughts and behaviors. Researchers developed the survey and obtained feedback on item clarity and importance from autistic college students. We distributed the survey through national networks, resulting in a sample of 123. We analyzed the data using descriptive statistics, ordinal logistic regression, and Mann–Whitney U tests. We analyzed open-ended data using an inductive thematic approach.

Results:

The sample was diverse in gender and sexuality, and the majority had co-occurring mental health conditions. Being autistic was an important part of the student’s identity, but they expressed worries about negative perceptions or impacts from disclosure. Most students wished they could disclose without consequences. Willingness to disclose to a professor at the beginning of the semester was predicted by how safe a student felt it would be to disclose at their university and the necessity of accommodations. Cisgender, heterosexual students, and white students were more likely to disclose than LGBTQIA+ students and students of color, respectively. In open-ended responses, students discussed concerns about disclosure and when they feel safe to disclose.

Conclusion:

We provide questions for students to consider when contemplating disclosure and recommendations for higher education professionals and future research.

Community Brief

Why is this an important issue?

Disclosure of autistic identity (a person sharing that they are autistic) is something that every autistic person must navigate, including autistic college students. Students may feel pressure to disclose in order to receive accommodations. By better understanding when and why autistic college students disclose their identity, professors and staff in higher education can better understand the needs of autistic college students.

What was the purpose of this study?

The purpose of this study is to understand when and why autistic college students disclose their identity to professors, peers, and disability support staff. We investigated how previous experiences or beliefs influence a student’s willingness to disclose.

What did the researchers do?

We created a survey that was completed by 123 autistic college students in the United States. This survey asked multiple-choice questions about a student’s identity, previous experiences, beliefs about disclosure, and disclosure behaviors. Then, we performed statistical analyses on these data including determining which factors increase a student’s willingness to disclose.

What were the results of the study?

We found that there are two things that predict whether a student will disclose to their professors at the beginning of the semester: whether they feel like the culture of their school makes it safe to disclose, and whether they feel that accommodations are necessary for them. Our sample was very diverse in terms of gender and sexuality. The students surveyed often experience mental health challenges and chronic illness. Generally, these students wish they could disclose but fear negative consequences, such as being treated differently or being thought of as less capable. Cisgender, heterosexual students, and white students are more likely to disclose than LGBTQIA+ students and students of color, respectively.

What do these findings add to what was already known?

This is the first known study to collect numerical data about disclosure. By collecting these data, we were able to analyze what things predict a student’s willingness to disclose and understand the rates of disclosure among autistic college students.

What are potential weaknesses in the study?

Our sample size was relatively small. Our sample does not accurately represent the racial demographics of U.S. college students and does not include college students outside of the United States. White students are overrepresented, while Black and Latine students are underrepresented. In addition, responses only came from 14 U.S. states and were mostly from Delaware and California.

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

Our article includes recommendations for those who work with autistic college students and gives them data to understand autistic disclosure in the college setting. These recommendations include not always requiring medical documentation when approving accommodations, educating the university community while focusing on autistic voices, encouraging faculty and staff to learn about inclusive teaching practices such as Universal Design for Learning, being up to date on LGBTQIA+ resources and terminology, and taking into account comorbid conditions when approving accommodations.