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

Project Details

Description

The aim of this study is to better understand autism self-identification; i.e., the process of identifying as autistic without a formal diagnosis. Our study will investigate the following research questions about the “who” and “why” of self-identification. Each research question corresponds with an analysis detailed in section 6.
First, we’re interested in understanding who self-identifies. We will explore this question by comparing those who self-identify to those who have a formal diagnosis on a variety of dimensions.
RQ 1: Who self-identifies as autistic without a formal diagnosis?
1A) What demographic factors (age, gender, sexuality, race, employment, education) are associated with autism self-identification?
1B) What autistic traits (social interaction, communication, social camouflage, cognitive rigidity, repetitive behaviors, sensory sensitivity, speech, RAADS-14 score) are associated with autism self-identification?
1C) What psychosocial outcomes (depression, anxiety, disability, impairment, wellbeing, autism community belonging) are associated with autism self-identification?
1D) What support needs (current/past/unmet need of various support services) are associated with autism self-identification?
1E) What beliefs about autism (what defines “autism,” is it a disability) are associated with autism self-identification?
1F) What other aspects of a person’s autistic experience (age first aware, having autistic family or friends) are associated with autism self-identification?
Second, we’re interested in understanding why people self-identify. We will explore this question with open-ended self-report items and content analysis.
RQ 2: What are people’s self-reported reasons for not receiving a formal diagnosis?
2A) Among those who want a formal diagnosis, why do they want one?
2B) Among those who want a formal diagnosis, what barriers do they face?
2C) Among those who don’t want a formal diagnosis, why not?
StatusActive
Effective start/end date1/08/231/08/25