OARacle Newsletter

In October 2024, OAR’s Board of Directors authorized funding for six applied autism research grants and one autism resource grant. These new research grants, totaling $338,844, bring OAR’s total research funding to $5.3 million since 2002. This article, describing the resource grant, is the seventh of the previews to be featured in The OARacle this year.

Autistic people who identify as transgender, nonbinary, gender diverse, or gender nonconforming are more likely to experience unmet counseling needs and report multiple barriers to accessing healthcare services. They report specific challenges in the autism assessment process that may lead to late identification of autism, according to a study in manuscript by the investigators for this OAR-funded study. Accurate and timely diagnosis may increase access to interventions and resources, which are associated with better long-term outcomes.

OAR-funded researchers, Meredith Maroney, Ph.D., and Lexie Wille, Ph.D., will develop a guide for clinicians using an intersectional lens, to improve access to affirmative autism assessment experiences for gender-diverse autistic adults, including those who are transgender and nonbinary, modeled after previously existing OAR guides.

The study, Improving autism assessment experiences for transgender adults: Testing the acceptability of a guide, encompasses development of the guide and review by gender-diverse autistic adults and clinicians who conduct neuropsychological assessments. Drs. Maroney and Wille will use data they collected for previous studies to develop the Trans-Affirmative Autism Guide. The guide will include:  

• What language to use 
• How much to focus on gender 
• How to attend to autism and gender

The specific aims of this two-year study are to: 

• Develop a guide for clinicians about how to improve the autism assessment process for gender-diverse autistic adults. 
• Test the acceptability of this guide with both gender-diverse autistic adults and clinicians.

Dr. Maroney is an assistant professor of Counseling Psychology at the University of Massachusetts Boston and a licensed psychologist. She is the director of the Double Rainbow Lab, which conducts strengths-based and social justice-oriented research at the intersection of autism and LGBTQ+ identities. Her research focuses on intersectional LGBTQ+ identities, with emphasis on the intersection of autism with diverse sexual orientations and gender identities.

Dr. Wille is an adjunct lecturer in New York University’s Applied Psychology Department. Her research focuses on improving the accessibility and effectiveness of healthcare services for the LGBTQ+ community. She is also a post-doctoral clinical fellow in the Gender and Sexuality Program at Columbia Irving Medical Center.

Methodology

The researchers will spend the first year developing the guide, working with two autistic community partners. Two practitioner partners will also share their experiences conducting assessments at the intersection of autistic and transgender identities. The practitioners will be asked to describe:  

• How they use gender identity to aid in their conceptualization  
• The measures they use  
• How they navigate sex-based norms 
• Their decision-making process for testing 

They will also offer suggestions for clinicians who are new to working with gender-diverse people.

Development will include a review of data collected by the researchers in their Beyond the Binary qualitative study and creating a detailed outline. The Beyond the Binary study explored the autism assessment experience from the perspective of transgender autistic adults who received an autism diagnosis. In total, 15 participants who were diverse in their age, sexuality, and gender identity participated in semi-structured qualitative interviews. A content expert will use the data and outline to create the guide’s content, and a design expert will lay out the content.

In year two of the study, the researchers will recruit 40 gender-diverse autistic participants to review the guide for acceptability, feasibility, and usefulness, and offer general feedback and suggestions. They will also be asked if the guide: 

• Affirms their identities 
• Is appropriately detailed 
• Aligns with how they would want things done 
• Is something they would send to their future providers  

Last, participants will be asked to provide suggested changes to the guide as well as general feedback for the research team. The research team will use quantitative and qualitative data gathered from the autistic participants’ review to revise the guide.

The next step will be to recruit 40 clinician participants to review the guide. The clinicians will rate and comment on:  

• Validity and level of detail of the content 
• Usefulness and feasibility of the guide as a whole 
• Relevance of the guide to their practice and their patients 
• Whether or not they would recommend this guide to other clinicians  

Clinicians will also assess their perceived acquired knowledge after reading the guide. Like the autistic participants, clinicians will be asked to provide suggested changes to the guide as well as general feedback for the research team.

Outcomes

In partnership with OAR, the researchers will disseminate the guide so that clinicians have free access to integrate the guide’s recommendations into their assessment practice. The researchers also see the guide as a resource for gender-diverse autistic people to share with their providers to advocate for an assessment experience that affirms their experiences as autistic and gender diverse.

With availability for both clinicians and gender-diverse autistic adults, the guide will fill a critical need for ongoing knowledge and education about affirming practices for clinicians who assess gender-diverse adults for autism.

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.