Common Intersection of Autism and Gender Diversity in Youth

There are prominent sex differences in the prevalence of numerous mental health and neurodiverse conditions. Both sex and gender related factors affect the expression and diagnosis of mental health conditions. Even though, sex and gender research has been integrated in research policies, the underlying mechanisms and interactions between them are still not fully understood. This lack of knowledge has harmful consequences for diagnosis and treatment of mental health conditions. Hence, we have set up a co-creation session in a one week workshop, including a multidisciplinary team of 25 scientists, clinicians and policy makers, to identify the main barriers in sex and gender research in neuroscience of mental health. We provide recommendations and solutions for three focus areas including neuroscientific methods, bridging the gap between research and the clinic, and stakeholder collaborations. These recommendations include guidelines for documenting sex and gender methods and results, analysis beyond the binary and open science, which will drive our understanding of sex and gender related mechanisms in neuroscience. This will ultimately benefit public health as this is an important step towards precision medicine and may function as an archetype for studying diversity. 

Roadmap towards understanding sex and gender in neuroscience of mental health

Abstract Research on LGBTIQ+ populations has focused primarily on identifying problems in the community (e.g., health disparities) and their predictors (e.g., minority stressors, discrimination). Scholars have argued that the approach of highlighting “damage” or deficits has been helpful for advocacy but has also harmed this community by perpetuating stereotypes (e.g., LGBTIQ+ individuals are unhealthy), ignoring or devaluing positive LGBTIQ+ experiences, and contributing to negative interactions in healthcare settings. To evaluate the extent to which a damage‐centered approach dominates the body of available research, the authors of this article conducted a content analysis of articles related to LGBTIQ+ health published in the Journal of Social Issues (JSI). The content analysis of 45 years of published manuscripts (1978–2023) revealed a strong emphasis on damage‐centered themes. In response, this article advocates for structural changes that may lead to an increase in research that focuses LGBTIQ+ experiences more holistically, with the overarching goal of reimaging LGBTIQ+ research. Such suggested changes include concentrated research funding and publishing opportunities, medical training that emphasizes a strengths‐based focus, and function‐oriented and autonomy‐promoting LGBTIQ+ research. This article suggests strategies to improve patient‐provider interactions in healthcare and enhance the overall well‐being of LGBTIQ+ communities. It advocates for a deliberate expansion towards a more holistic, less damage‐centered body of research in LGBTIQ+ psychology. 

Article 7: The damaging legacy of damage‐centered LGBTIQ+ research: Implications for healthcare and LGBTIQ+ health

The past three decades have seen an exponential increase in the publication of children's books about autism. This increased availability of children's books is exciting because they have the power to promote understanding, acceptance, and appreciation of neurodiversity. However, growing concerns have been raised by both autistic and non‐autistic people that some children's books about autism may work against neurodiversity, rather than promoting it. This Commentary discusses the strikingly different ways in which children's books about autism portray key concepts related to neurodiversity, including autistic differences, agency, abilities, and communication. We present concrete examples (including books by autistic authors); highlight the views of autistic and non‐autistic parents of autistic children; and discuss how different books may leave readers with different impressions of autism and neurodiversity. Given the vastly different themes that emerge across different books, we conclude that it is important for educators, families, and other members of the autism community to make informed and individualized choices about what books they use for what purpose. We emphasize the need for systematic, high‐quality research on children's books about autism, including content analyses and studies that determine what messages these books send to their intended audience: children. It is vital that autistic people continue to shape this conversation, contributing unique insights that inform research priorities and the methodological approaches used to investigate them.

A commentary on children's books about autism: What messages do they send about neurodiversity?

Abstract This systematic review investigated how studies have measured gender dysphoria (GD) in autistic samples and the impact of using different measures on study results. The literature search identified 339 relevant papers, with 12 of them meeting the inclusion criteria. Results showed that seven different measures of GD characteristics have been used with autistic samples and that the studies consistently reported a greater number of GD characteristics and a greater severity of GD in autistic compared to non-autistic samples. Methodological common practices were found in recruiting participants from clinical settings rather than the general population, having more autistic males than females in the samples, for studies being conducted in Europe, North America, and Oceania, and using single-item measures of GD for samples of autistic children. Issues were identified with study designs and measures of GD, suggesting a need for a more standardized multi-item self-report measure of GD for use in clinical and non-clinical samples across different ages and cultures. 

pdf/a-systematic-review-of-gender-dysphoria-measures-in-autistic-11g6iv4tdb.pdf

A Systematic Review of Gender Dysphoria Measures in Autistic Samples

Background
Autistic transgender people face unique risks in society, including inequities in accessing needed care and related mental health disparities. Given the need for specific and culturally responsive accommodations/supports, the characterization of key experiences, challenges, needs, and resilience factors within this population is imperative. This study developed a structured self-report tool for autistic transgender young adults to communicate their experiences and needs in a report format attuned to common autistic thinking and communication styles.


Methods
This cross-nation project developed and refined the Gender-Diversity and Autism Questionnaire through an iterative community-based approach using Delphi panel methodology. This proof-of-principle project defined "expertise" broadly, employing a multi-input expert search approach to balance academic-, community-, and lived experience-based expertise.


Results
The expert collaborators (N = 24 respondents) completed a two-round Delphi study, which developed 85 mostly closed-ended items based on 90% consensus. Final item content falls within six topic areas: the experience of identities; the impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people; tasks and experiences of everyday life; gender diversity- or autism-related care needs and history; the experience of others doubting an individual's gender identity and/or autism; and the experience of community and connectedness. The majority of retained items relate to tasks and experiences of everyday life or the impact of experienced or anticipated discrimination, bias, and violence.


Conclusions
This study employed a multipronged multimodal search approach to maximize equity in representation of the expert measure development team. The resulting instrument, designed for clinical, research, and self-advocacy applications, has parallel Dutch and English versions and is available for immediate use. Future cross-cultural research with this instrument could help identify contextual risk and resilience factors to better understand and address inequities faced by this large intersectional population.

The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults.


 
 Access to communication is a basic human right, yet autistic adults have reported challenges fully and effectively expressing themselves throughout childhood. This may be due to the historical (and ongoing) focus and prioritization of speech skills as a barometer of communicative success. The result is a lack of support for other forms of communication for children who may speak but still require support to fully meet their communication needs. This study aimed to examine the knowledge, experience, and training of school-based professionals in order to better understand one possible barrier to early communication access for autistic children.
 
 
 
 Using a participatory research method, we designed and administered a 35-question online survey. A total of 567 participants completed the survey, including 465 special educators, 71 speech-language pathologists (SLPs), and 31 other professionals. A segment of the survey data was analyzed in R. Comparisons between and within the largest groups (SLPs and special educators) were made with nonparametric statistics, including Fisher's exact, Wilcoxon signed-ranks, and Quade tests.
 
 
 
 SLPs and special educators differed significantly on a variety of survey measures, including undergraduate coursework in augmentative and alternative communication (AAC) and autism, caseloads, and confidence related to working with autistic students and AAC users. Regardless of profession, most respondents reported completing what they considered to be an AAC assessment.
 
 
 
 Increasing school-based professionals' knowledge related to autism and AAC, as well as opportunities to improve skills, is critical to resolving access and opportunity barriers for autistic children who speak but may benefit from AAC. Partnering with autistic people to better understand autistic speech and careful collaboration among team members are recommended.
 
 
 
 
 https://doi.org/10.23641/asha.24299422
 


Autistic Communication: A Survey of School-Based Professionals

Abstract This paper focuses on my meaningful participation in society as a semispeaking AAC user, the importance of self-determination and interdependence, and the critical role of participatory research. Having spent years in speech-centric services as a child, I pushed myself to use mouthwords for decades. But the cost was high. Such "expensive speech" is defined as that which may be effective, but has a significant cost in terms of energy, cognitive resources, or other internal resources, affecting what is available for other or later skills or tasks. Multimodal AAC has decreased my cognitive load, freeing up resources for more meaningful participation in society. Yet many people do not have access to the supports they need to communicate fully. Future research should examine and deconstruct barriers to AAC that are established and maintained by ableism. Every human deserves the opportunity to explore multiple robust AAC options. Too often AAC users’ perspectives are disregarded, no matter how tenacious our self-advocacy. The idea that the field of AAC research itself would perpetuate this enforced "voicelessness" is deeply unjust. Our contributions to AAC research – via participatory models that position us as equal partners – can, will, and do make that research more meaningful.

Speech is exhausting.

PURPOSE
Families and professionals often consider augmentative and alternative communication (AAC) a "last resort" for persons with communication challenges; however, speaking autistic adults have reported that they would have benefited from access to AAC as children. This tutorial discusses the history of this "last resort" practice and its perpetuation within the medical model of disability. The tutorial focuses on communication access, choice, and agency for autistic students.


METHOD
We provide a brief overview of the AAC community and their preferred terminology, review the history of traditional approaches to research on AAC and autism, and then examine the relationship between disability models and ableism to views of spoken language as a priority of intervention. Studies on this topic are rare, and resisting ableism requires acknowledging and honoring disabled people's experiences and expertise. Therefore, we promote autistic expertise within the framework of evidence-based practice and discuss the experiences of autistic people and spoken language. Finally, we consider the role of the speech-language pathologist (SLP) in assessment and offer autistic-based strategies and recommendations for communication support.


CONCLUSIONS
Speaking autistic students who could benefit from AAC may not have access to AAC due to the prioritization of spoken language and lack of awareness of the benefit of AAC. We recommend that SLPs and school-based professionals support and facilitate access, communicative choice, and agency by implementing multimodal communication strategies to include AAC use for autistic students regardless of their spoken language status. Promoting all types of communication and ensuring opportunities for communication across multiple modalities are paramount to a child's agency and self-determination, as is normalization of AAC.

Promotion of Communication Access, Choice, and Agency for Autistic Students.

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The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults.

Autistic Communication: A Survey of School-Based Professionals

Speech is exhausting.

Promotion of Communication Access, Choice, and Agency for Autistic Students.