Unique Needs and Preferences of Self-Identifying Adults with Autism

Adults who self-identify as autistic are a growing demographic, with many lacking a formal diagnosis. Recent research has shed light on their unique characteristics, experiences, and needs. A cross-sectional, mixed-methods study of self-identifying autistic adults (n = 147) and those with a formal diagnosis (n = 115) found significant differences in demographics, autistic traits, psychosocial outcomes, support needs, and beliefs about autism. The study highlights the necessity of better supporting self-identifying adults, who may be uniquely vulnerable to experiencing adverse psychosocial outcomes.

Key Takeaways:

• Self-identifying autistic adults (n = 147) were similar to diagnosed adults (n = 115) in autistic traits, including diagnostic traits (93% of both groups scored ≥ 14 on the RAADS-14).
• Self-identifying autistic adults were more likely to be cisgender female (53.5% vs. 27.0% in diagnosed adults), experienced worse mental well-being (d = -0.41), and faced unique barriers to receiving support.
• A majority (68.7%) of self-identifying adults wanted a formal diagnosis, but faced significant barriers.
• Self-identifying adults cited reasons for wanting a diagnosis, including validation and access to certain services, but also grounds for hesitation, such as fear of stigma and discrimination.
• Adults who self-identify as autistic may be uniquely vulnerable to experiencing adverse psychosocial outcomes, which may be improved by increasing access to diagnosis and/or psychosocial services.
• The study emphasizes the importance of understanding the unique characteristics, experiences, and needs of self-identifying adults to better support them.

Statistics:

• 93% of both self-identifying and diagnosed autistic adults scored ≥ 14 on the RAADS-14.
• 47.0% of diagnosed adults had unmet support needs, compared to 71.4% of self-identifying adults.
• 27.0% of diagnosed adults were cisgender female, compared to 53.5% of self-identifying adults.
• 68.7% of self-identifying adults wanted a formal diagnosis.

Sources:

• osf.io/preprints/psyarxiv/8bsyz_v1/