How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study

Abstract

Background:

Recent studies suggest that the funding breakdown of autism research in the United States may not align with stakeholder priorities. Furthermore, the majority of stakeholder-engaged research involves parents of autistic individuals rather than autistic adults themselves, who may have differing perspectives on research and funding priorities. Women and non-binary adults have been historically underrepresented in autism research.

Objectives:

The goal of the current study was to examine the autism research priorities of a group of autistic adults, with a particular focus on how these priorities are influenced by one’s gender identity.

Design:

A concurrent mixed-methods design was used for this study.

Methods:

Seventy-one autistic adults (n = 18 men, n = 29 women, n = 24 non-binary adults) completed an online survey regarding the current funding landscape for autism research. Participants ranked the main research topics of the Interagency Autism Coordinating Committee (IACC) and identified top-priority research areas through free-text responses. Response themes were analyzed using content analysis and compared with the existing topic rankings.

Results:

Overall rankings of IACC research areas had a near inverse relationship with the amount of funding per research area. Main themes of stakeholder-generated research topics included “Characterization,” “Societal Change,” “Well-Being & Trauma,” “Diagnosis & Healthcare,” and “Accessibility & Services.” There was a relatively high overlap between topics identified by the IACC and by the stakeholder-generated topics. Subtle but important differences in topics arose based on gender, with women and non-binary adults identifying topics that were not identified by autistic men.

Conclusion:

Unique priorities generated by those typically excluded from autism research development underscore the importance of co-creating research with underrepresented stakeholders impacted by this work. The current study echoes the growing movement in the field of autism research to center autistic perspectives at every stage of research, including the establishment of funding priorities.

Keywords

advocacy autism community engagement gender stakeholders

Introduction

Autism is estimated to be diagnosed in one out of every 44 children, warranting a greater need for societal understanding of and support for autistic individuals.^1–5 This need is reflected in the exponential growth of US federal funding allocated to autism research over the past two decades, doubling from $200 million in 2008 to $400 million in 2018.⁶ However, certain areas of autism research have been prioritized over others: The majority of funding (56%) supports biological research and studies examining risk factors for autism. In contrast, considerably less funding is allocated for research on treatments and interventions (16%), services (5%), and autism beyond childhood (2%). This funding allotment appears to be at odds with the research priorities of the autism community and stakeholders, which call for greater funding for research on supports, applied science, and mental healthcare.^7–9 This disparity between the allocation of government funds and the priorities of the autism community has led to contention and mistrust between stakeholders and researchers.¹⁰

Direct evaluations of the correspondence between research funding and stakeholder priorities have been conducted in countries such as the United Kingdom.¹¹ However, no such evaluations have been extended to the United States and its unique funding landscape. The Interagency Autism Coordinating Committee (IACC) is a federal organization tasked with bridging this gap between researchers, community members, and policy makers in the United States. The IACC⁶ communicates policy and funding information to the public and makes recommendations for best practices in US-based autism research, periodically publishing a strategic plan with suggested areas of autism research that should be prioritized. However, it is unclear whether the areas prioritized by the IACC align with those of key stakeholders in the US autism community. The current study addresses this using a concurrent mixed-methods design, collecting quantitative and qualitative data simultaneously and analyzing them together.¹² By asking autistic adults to not only rate and rank the existing IACC priorities but also to identify their own research priorities, we are able to determine how these priorities align to provide insight and suggestions for future research aims.

Recent collaborative research conducted in partnership with autistic individuals has highlighted the necessity and bi-directional benefits of co-designing research with autistic people rather than simply doing research on autistic people.^10,13,14 When research reflects the needs and values of those it is intended to support, both researchers and stakeholders have found the end-product to be more meaningful and beneficial.^15,16 Autistic adults, parents of autistic individuals, and clinicians who serve the autistic population are all considered to be valuable community stakeholders in autism research. However, a recent systematic review of collaborative autism research revealed that most stakeholder representatives are parents of autistic individuals, with very few studies in the United States directly consulting autistic individuals themselves.¹⁷ While there has not been a direct comparison of research funding priorities within autism stakeholder groups, there is evidence to suggest that autistic adults may have different research priorities than non-autistic parents. For example, a recent study within European countries found that autistic adults had less overall endorsement of autism research compared with parents and clinicians, and ranked research topics such as the early detection and intervention of autism as lower than other stakeholder groups.¹⁸ A similar study in the United States reported that the smaller sub-sample of autistic adults rated all research topics as lower importance than non-autistic parents, clinicians, and researchers, with the exception of topics surrounding lifespan and well-being.⁸ These differences, in the context of other studies reporting overall consistency between stakeholder groups,^9,11 warrant a deeper focus into the specific priorities of autistic adults.

When evaluating the priorities of autistic adults, it is particularly important to include the perspectives of those who have been historically underrepresented in autism research. One disproportionate area of representation within the field is that of sex and gender, as autism is diagnosed more often in boys than girls, with four boys diagnosed for every one girl.¹ The concepts of sex and gender have been frequently referred to interchangeably in the existing body of autism research without the explicit definition of each or measure of participant gender identity. Researchers and self-advocates have called for a better understanding of gender within the autism population, particularly as one’s assigned sex at birth and perceived gender interact with each other and shape lived experiences from a young age.^19,20 This is particularly notable within the autism population, as children who are assigned female at birth and subsequently socialized as girls may exhibit different traits that make up what is commonly referred to as the “female autism phenotype.”^21–23 These differences can make autism more difficult to recognize and ultimately diagnose autism in girls and other children who do not conform to male gender norms, creating a “male bias” in diagnostic assessments.^24,25 Research suggests that even if school-age girls present with classic “male autism traits,” teachers and others around them still have difficulty associating these traits with autism.²⁶ As such, individuals who are socialized as girls from a young age are routinely diagnosed later than cisgender boys,^27–30 which decreases their ability to access needed services and supports and increases their risk of experiencing poor mental health.^28,31 These problems are exacerbated for transgender and gender diverse (TGD) individuals, whose gender identity does not align with their assigned sex at birth. The vast majority of the studies characterizing the “female autism phenotype” have done so based on participants’ perceived gender or assigned sex at birth, resulting in little information regarding how these findings translate over to TGD individuals.¹⁹

Recent studies have found high rates of overlap between the autistic population and the TGD population, suggesting that TGD individuals display autism traits and receive diagnoses at rates 6 to 10 times higher than cisgender individuals.^32–34 TGD autistic adults are multiply minoritized through these intersecting identities and experience higher rates of mental illness, poor physical health, and medical discrimination compared with cisgender autistic adults.³⁵ This draws a parallel to the reported experiences of cisgender women, who are not only socialized differently and present different traits but also experience heightened risk of relationship abuse and peer victimization throughout their life.^36–39 Given the historical lack of attention to the construct of gender within autism research, the current study is framed specifically around gender identity rather than assigned sex at birth to consider one’s lived experiences and identity to further contribute to the understanding of gender and autism.⁴⁰ The unique lived experiences of girls, women, and non-binary (NB) autistic individuals may result in a distinct set of research priorities within this group, thus necessitating an examination of research priorities through the lens of gender identity.

The current study assessed the alignment of IACC funding priorities with the research priorities of a sample of autistic adults within the United States, with a specific focus on how such priorities differ by the gender identity of autistic adults. Research questions included: (1) How do the research priorities of autistic adults align with the priorities identified in the IACC Strategic Plan? (2) What research topics are important to autistic adults? and (3) Do research priorities vary by gender identity among autistic adults? A concurrent mixed-methods design¹² was used to simultaneously compare quantitative rankings of existing IACC priorities with qualitatively coded themes of stakeholder-generated research questions. By asking autistic adults from different gender groups (women, NB adults, and men) in an online survey to rate and rank existing IACC priorities and to identify their own research priorities, we were able to not only evaluate but compare IACC priorities with those of autistic adults, with an added examination of priorities based around gender.

Methods

Participants

Participants were recruited via social media (Facebook, Twitter), an online research participation website (ResearchMatch), and a local autism registry. Autistic adults were eligible to participate if they lived in the United States and either had or were actively seeking a clinical autism diagnosis. We chose not to exclude those actively seeking a diagnosis due to the heightened difficulty accessing an accurate and timely autism diagnosis for cisgender women and TGD individuals.^41,42 The current study was part of a larger study, the recruitment and data collection for which took place from April 2021 to January 2022 aiming to recruit autistic women, NB adults, men, as well as parents of autistic individuals (N = 20 from each group). Women, NB adults, and parents of girls were invited to complete a follow-up interview as part of this larger study, and recruitment continued until saturation for these interviews was reached, resulting in higher numbers of these groups. For the purpose of scope in the current study, only survey data from autistic adults is discussed.

Seventy-one autistic adults completed the survey (29 women, 24 NB adults, and 18 men). Adults self-reported their gender: Four adults reported either being gender-fluid and/or being both NB and a woman. For the purpose of grouping participants in terms of minoritized gender status, these participants were included in the NB group. In response to the question, “Have you ever noticed something different about your gender, like you felt like a different gender than the one people thought you were?,” 56% of participants reported experiencing gender diversity at some point in their life (13 women; 24 NB adults; 4 men). The age of adults ranged from 18 to 70 years old (M = 32.76, SD = 11.35). Fifty-nine had a clinical diagnosis of autism; 12 were actively seeking a diagnosis (2 women; 9 NB adult; 1 man). For those who reported having a clinical diagnosis, their age at diagnosis ranged from 2 to 67 years (M = 24.47, SD = 15.87 years). There were no significant gender differences in age (p = .41) or age at diagnosis (p = .36). Sixty-four adults reported having a co-occurring condition. Twelve adults reported that they work in a profession related to autism. Participant demographics are reported in Table 1.

Table 1.

Participant demographics.

	Autistic women	Autistic NB adults	Autistic men	Total sample
Total number	29	24	18	71
Current age
Mean (in years)	33.79	33.8	29.6	32.76
Standard deviation	(12.31)	(10.9)	(10.2)	(11.35)
Range	12–70	19–65	18–57	18–70
Clinical autism diagnosis
Yes, has official diagnosis	27 (93%)	15 (62%)	17 (94%)	59 (83%)
No: Actively seeking/awaiting diagnosis	2 (7%)	9 (38%)	1 (6%)	12 (17%)
Age of autism diagnosis
Mean (in years)	26.81	25.4	19.8	24.47
Standard deviation	(16.24)	(14.3)	(16.4)	(15.87)
Range	3–67	4–62	2–56	2–67
Race
White	23 (79%)	20 (83%)	12 (67%)	55 (77%)
Asian / Middle Eastern	1 (3%)	3 (13%)	1 (6%)	5 (7%)
Indigenous/ Native American	1 (3%)	–	–	1 (1%)
Black / African American	2 (7%)	–	2 (11%)	4 (6%)
Biracial / Multiracial / Other	2 (7%)	1 (4%)	3 (17%)	6 (8%)
Education
No degree received	–	–	1 (6%)	1 (1%)
High school/GED/modified diploma	4 (14%)	4 (17%)	3 (17%)	11 (15%)
Two-year college	4 (14%)	7 (29%)	2 (11%)	13 (18%)
Four-year college	12 (41%)	8 (33%)	7 (39%)	27 (38%)
Graduate or professional degree	9 (31%)	5 (21%)	5 (28%)	19 (27%)
Income
Less than $20,000	7 (24%)	9 (38%)	5 (28%)	21 (30%)
$20,001–40,000	9 (31%)	5 (21%)	2 (11%)	16 (23%)
$40,001–60,000	4 (14%)	4 (17%)	1 (6%)	9 (13%)
$60,001–90,000	7 (24%)	5 (21%)	4 (22%)	16 (23%)
More than $90,000	2 (7%)	1 (4%)	6 (33%)	9 (13%)

NB: non-binary.

Procedure

Participants completed an online survey that included demographic questions, questions about gender identity, and research priorities (see Supplemental Material). To quantitatively assess research priorities, participants were shown a list of the following seven research questions highlighted in the IACC Strategic Plan:

How can I recognize the signs of ASD, and why is early detection so important? (Henceforth “Screening and Diagnosis”)

What is the biology underlying ASD? (Henceforth “Biology”)

What causes ASD and can disabling aspects be prevented or preempted? (Henceforth “Risk Factors”)

What treatments and interventions will help? (Henceforth “Treatments and Interventions”)

What kinds of services and supports are needed to maximize quality of life for people on the Autism Spectrum? (Henceforth “Services”)

How can we meet the needs of people with ASD as they progress into and through adulthood? (Henceforth “Lifespan Issues”)

How do we continue to build, expand, and enhance the infrastructure system to meet the needs of the ASD community? (Henceforth “Infrastructure”)

Participants were asked to indicate how important they felt these questions were overall on a 5-point Likert-type scale ranging from “very important” to “not so important.” Participants were then asked to rank the questions from the most important (1) to the least important (7) by dragging and dropping the questions on their screen. Finally, participants were asked two free-response questions (Henceforth Q1 and Q2): (Q1) “Are there any questions that weren’t covered by the previous seven questions that you think should be investigated by researchers? If so, please specify.” and (Q2), “If you could choose one thing about autism to be researched in the coming decade, what would it be?”

Quantitative data analysis: weighted rank

Research question rankings were weighted to allow for a relative comparison between questions and groups and to account for differences in number of participants between gender groups. Our weighted rank approach was modeled after that of previous stakeholder research:⁴³ For each question, the number of participants who ranked the item as “1,” “2,” “3” . . . “7” was multiplied by a weight which ranged from 1 to 7 (a rank of 1 received a weight of 7, a rank of 2 received a weight of 6 . . . a rank of 7 received a weight of 1). Rankings were calculated for the overall participant group and for each gender group. IACC-reported percentages of federal and private funding allocations for each research question were used to compare the stakeholder priorities with the priorities of funders (Figure 1).⁶

Figure 1.

Breakdown of research funding allocated to each of the seven IACC research topics compared with the topics’ weighted ranks by autistic stakeholders in the current sample.

Qualitative data analysis: content analysis

We chose content analysis as a qualitative approach to categorize, describe, and report the frequency of themes among responses to Q1 and Q2.⁴⁴ Responses were coded by two graduate-level researchers and a community stakeholder using an inductive coding method: The coding scheme was developed as the data were read and final codes were agreed on as a group.⁴⁵ We used a semantic coding approach, analyzing the explicit content of what was written by participants rather than any underlying subtext.⁴⁶ Because of this, responses that did not answer each question were coded as an unrelated comment (e.g. “My autism is not a disease. It does not need to be cured” (NB adult, age 41, Q1)) and considered in later stages of the overarching study. Q1 and Q2 were coded separately: Each member of the coding team independently coded all responses, and codes were applied if a majority of team members endorsed a code. After codes were finalized, codes were grouped into main themes and sub-themes by the first author.

Ranking data (quantitative strand) and themes from the content analysis (qualitative strand) were “mixed” after each was analyzed, providing an overall analysis of how well the priorities of autistic adults in the current sample, overall and grouped by gender, align with the existing IACC priorities.

Results

Quantitative strand: rankings of IACC research questions

The majority of participants rated the seven IACC research questions overall as “Very Important” (N = 40) or “Important” (N = 17), followed by “Moderately Important” (N = 8), and “Not So Important” (N = 2). Analysis of variance showed no main effect of gender group on stakeholder ratings (p = .09). Stakeholder rankings of the research questions were the near inverse of the order in which the research topics were reported to receive funding. The two topics ranked most important by stakeholders were research on “Services” and “Infrastructure,” followed by “Lifespan Issues.” These were among the least funded IACC topics, respectively making up 6%, 9%, and 3% of total funding (Figure 1). Research questions on the biology and causes of autism were ranked the lowest of importance by stakeholders, despite making up 44% and 19% of total autism research funding in the United States.⁴⁷

Next, research question rankings were broken down by gender group (Figure 2). The rankings of autistic women and of autistic NB adults were nearly identical, with the only difference being their top two choices: Women ranked “Infrastructure” as the 1st (most important) and “Services” as 2nd, while NB adults ranked these questions in the inverse order. Autistic men ranked “Services” as their top priority, aligning with the NB group, but ranked “Infrastructure” as 4th most important, with their 2nd choice being “Lifespan Issues” (3rd for women and NB adults). While all groups ranked “Biology” and “Risk factors” as the two least important topics, autistic men ranked “Treatments and Interventions” higher (3rd) than did women and NB adults, who ranked it as 5th most important. Finally, autistic men ranked the “Screening and Diagnosis” as slightly lower (5th) than women and NB adults (4th).

Figure 2.

Weighted ranking of the seven IACC research topics by autistic adults within each gender group.

Qualitative strand: stakeholder-generated research priorities

Thirty-eight participants provided a written response to Q1 (“Are there any questions that weren’t covered by the previous 7 questions that you think should be investigated by researchers? If so, please specify.”). Sixty-six participants provided a written response to Q2 (“If you could choose one thing about autism to be researched in the coming decade, what would it be?”). Thirty-three participants (12 women, 12 NB adults, and 9 men) left Q1 blank or wrote “no,” and 5 participants (1 woman, 1 NB adult, and 3 men) left Q2 blank. Although Q1 and Q2 were coded separately, their resulting themes and sub-themes were similar and are discussed in tandem below. Research topics and questions identified by participants fit into five main themes: “Accessibility & Services,” “Societal Change,” “Diagnosis & Healthcare,” “Well-Being & Trauma,” and “Characterization.” Tables 2 and 3 detail the number of participants who brought up questions related to each main theme and their sub-themes (italicized below).

Table 2.

Themed responses to survey question 1: “Are there any questions that weren’t covered by the previous 7 questions that you think should be investigated by researchers?”.

Main theme	Sub-theme	N (%) of participants who reported this theme as a research question that should be investigated
		Total(N = 38)	Women(N = 17)	NB(N = 12)	Men(N = 9)
Characterization		16 (42%)	8 (47%)	1 (8%)	7 (78%)
	Understanding the ontology of autism	4	1	–	3
	Characterizing autism in female & non-binary people	5	4	1	–
	Characterizing development in autism	3	1	–	2
	Understanding aging & adulthood	4	2	–	2
Societal Change		17 (45%)	6 (35%)	6 (50%)	5 (56%)
	Centering autistic perspectives	3	1	1	1
	Combatting stigma & discrimination	7	1	3	3
	Embracing neurodiversity	7	4	2	1
Well-being & trauma		15 (39%)	6 (35%)	6 (50%)	3 (67%)
	Understanding trauma	7	3	4	–
	Maximizing quality of life	5	1	2	2
	Promoting community connection	3	2	–	1
Diagnosis & healthcare		18 (47%)	10 (59%)	4 (33%)	4 (44%)
	Improving the diagnostic process	8	4	2	2
	Understanding co-occurring conditions	5	3	1	1
	Training healthcare providers	3	2	1	–
	Identifying helpful treatments	2	1	–	1
Accessibility & services		12 (32%)	4 (24%)	5 (42%)	3 (33%)
	Improving accessibility	5	2	2	1
	Implementing supports	4	1	1	2
	Enhancing supports in education & employment	3	1	2	–

NB: non-binary.

Table 3.

Themed responses to survey question 2: “If you could choose one thing about autism to be researched in the coming decade, what would it be?”.

Main theme	Sub-theme	N (%) of participants who reported this theme as a research question that should be investigated
		Total(N = 66)	Women(N = 28)	NB(N = 23)	Men(N = 15)
Characterization		19 (29%)	11 (37%)	3 (13%)	5 (33%)
	Understanding the ontology of autism	6	2	1	3
	Characterizing autism in female and non-binary people	7	5	2	–
	Characterizing development in autism	2	–	–	2
	Understanding aging and adulthood	4	4	–	–
Societal change		18 (27%)	9 (32%)	8 (35%)	1 (7%)
	Centering autistic perspectives	6	2	3	1
	Combatting stigma & discrimination	5	3	2	–
	Embracing neurodiversity	7	4	3	–
Well-being & trauma		24 (36%)	7 (25%)	9 (39%)	8 (53%)
	Understanding trauma	7	–	4	3
	Maximizing quality of life	8	2	2	4
	Promoting community connection	9	5	3	1
Diagnosis & healthcare		17 (26%)	7 (25%)	7 (30%)	3 (20%)
	Improving the diagnostic process	6	4	2	–
	Understanding co-occurring conditions	6	3	1	2
	Training healthcare providers	1	–	1	–
	Identifying helpful treatments	4	–	3	1
Accessibility & services		24 (36%)	13 (46%)	8 (35%)	3 (20%)
	Improving accessibility	6	2	3	1
	Implementing supports	12	8	2	2
	Enhancing supports in education and employment	6	3	3	–

NB: non-binary.

Accessibility & services

Participants brought up research questions aimed at improving accessibility to necessary support services, to non-autistic spaces, and to appropriate accommodations as important to study going forward: “How can autistic people be accommodated by society? What accommodations would be most helpful?” (Autistic NB adult, age 20, Q2). Participants also suggested research questions related to methods of implementing supports, such as assessing barriers to support and making services more available to the community: “How best can currently available interventions, accommodations, and supports be leveraged to improve the quality of life of autistic people right now?” (Autistic man, age 26, Q2). Women and NB adults identified research questions specific to enhancing supports in education and employment. These questions highlighted research that facilitates inclusive environments such as “What changes can be made in classrooms and educational environments to make them more inclusive, safe, and accommodating for autistic individuals?” (Autistic NB adult, age 32, Q1), research that identifies resources for success in these areas, and research supporting job attainment: “How to expand access to professional career fields to include autistic people” (Autistic woman, age 36, Q2).

Societal change

Research questions brought up that involved a fundamental shift in research and/or society included centering autistic perspectives, which were questions regarding how autistic individuals define quality of life, what “types of accommodations autistic people actually find helpful” (Autistic woman, age 23, Q2), and “how actual autistic people feel about current ‘treatments’ for autism” (Autistic NB, age 30, Q2). Participants identified research questions aimed at combatting stigma & discrimination as important: “How can we dispel misinformation about ASD and reduce social stigma?” (Autistic man, age 20, Q1). Only women and NB adults identified such questions as their top priority in Q2. Finally, participants suggested research questions aimed at embracing neurodiversity, referring to the natural variation in brain functioning and behavior in the global population.⁴⁸ These research questions aimed to educate others about neurodiversity, make non-autistic spaces better fit autistic needs, and identify the strengths of autism: “How things such as special interests and stimming are HELPFUL to autistic individuals” (Autistic NB adult, age 26, Q2). Only women and NB adults identified this topic as their top priority for Q2.

Diagnosis & healthcare

Additional questions identified by participants included those aimed at improving the diagnostic process. These research questions, identified by women and NB adults as a top priority for Q2, centered around understanding the impact of a late or missed diagnosis as well as improving diagnostic tools and criteria: “How often do autistic people (who do not follow the “male autism” standard) try to get a diagnosis and are told they’re not autistic they’re [insert xyz] and how can we improve this as well as make it more affordable?” (Autistic woman, age 36, Q1). Participants also identified understanding co-occurring conditions as an important area of research and as a top priority. These questions sought to understand “links to common comorbidities such as anxiety disorders, and how these can be mitigated” (Autistic man, age 25, Q2). Women and NB participants identified research questions focused on training healthcare providers as an important area: “What additional kinds of training can we provide medical professionals so that they can more effectively and kindly treat autistic people?” (Autistic woman, age 52, Q1) and one NB adult identified this as a top priority: “How to give doctors tools to make diagnoses easier (especially for adults and assigned female at birth persons).” (Autistic NB adult, age 36, Q2). Research around identifying helpful treatments was brought up by men and women in Q1: “Are current standard-of-care treatments for physical health problems commonly associated with ASD appropriate for use in the autistic population (or should such treatments be adapted/modified)?” (Autistic man, age 26, Q1) and identified by men and NB adults as a top priority: “Effective therapy for anxiety and depression in autistic people . . . better therapy options could literally be life-saving” (Autistic NB adult, age 28, Q2).

Well-being & trauma

Women and NB adults identified research questions aimed at understanding trauma, such as examining traumatic effects of adverse autism treatments and the role that trauma plays in a diagnosis. Only NB adults and men identified these questions as their top priority for Q2 by asking about the overlap between trauma, post-traumatic stress disorder, and autism and “how treatment for a traumatized autistic individual might differ from that of a neurotypical” (Autistic NB adult, age 26, Q2). Participants also identified research questions aimed at maximizing quality of life for autistic individuals as a high priority, asking questions about independence and daily living: “What methods can be used to maximize the capacities of people with ASD in order to foster the most self-fulfillment?” (Autistic NB adult, age 46, Q1); as well as mental health: “How to improve/preserve the mental health of autistic people throughout their lifespan” (Autistic woman, age 39, Q2). Participants also suggested research questions aimed at promoting community connection: These were research topics examining social inclusivity for autistic individuals, identifying community supports, and seeking to make “adjustments to communities that may improve social accessibility and provide increased opportunity for community participation” (Autistic woman, age 27, Q2).

Characterization

Participants identified research questions related to understanding the ontology of autism such as, “Are there different types of autism?” (Autistic man, age 57, Q1), understanding the prevalence of autistic traits in the general population, identifying “the biological basis of it” (Autistic man, age 45, Q2), and understanding autistic cognition. Autistic women and NB adults identified research topics characterizing autism in female and non-binary people as important, aiming to understand “why ASD presents differently in women and non-binary folks” (Autistic woman, age 29, Q1) and prioritizing research for “helping improve diagnostic criteria for female autistics” (Autistic NB adult, age 25, Q2). Men and women suggested research aimed at characterizing development in autism as additional important topics, asking questions such as “How best can we predict the developmental trajectory of a given autistic person?” (Autistic man, age 26, Q1) and how autistic traits manifest over a lifetime. Only men identified research related to development as their top priority for Q2. Men and women also brought up research aimed at understanding aging and adulthood as important topics, with questions surrounding the identification and support of transition-age and older adults. Only women identified aging as a top research priority, seeking to understand “how autistic people age and what problems they commonly face as they age” (Autistic woman, age 52, Q2).

Discussion

In this study, we sought both quantitative and qualitative input from autistic stakeholders in the United States regarding their priorities for autism research. Our results align with those of previous studies surveying autistic adults and contribute to the scaffolding of future research questions that best reflect the values and priorities of the autism community.^11,43 Importantly, the input from women and NB adults in the current study provided insight into priorities that may not emerge from typical samples primarily made up of autistic men or parents of autistic individuals. Taken together, these findings highlight the need for further investigation into the differences in IACC and autistic stakeholder priorities and underscore the importance of autistic representation in the decision-making surrounding research funding.

Overall rankings suggest that among the research questions put forth by the IACC, autistic stakeholders prioritize research that supports autistic people in their daily lives over basic research that may not yield immediate impacts to the autism community. This finding reflects previous US-based research on stakeholder priorities.^8,9 Autistic stakeholders as a whole group ranked research on “Services” and “Infrastructure” as the most important research topics and ranked research on “Biology” and “Risk Factors” as the least important. Despite the majority of participants ranking the IACC questions overall as “Very Important,” the ranking order by importance was the near inverse of how the seven IACC research areas are prioritized in terms of funding, with the lowest-ranked topics receiving the most funding. No previous study to our knowledge has evaluated US autism research funding distributions through this lens, and our findings supplement those from studies in other countries which suggest a disconnect between community and funder priorities.^7–9

Further differences arose when rankings were broken down by gender among stakeholders. Autistic women and NB adults were nearly identical in their rankings, perhaps due to shared or similar minoritized experiences. While further research is needed to confirm these priorities within a larger population, men deviated from women and NB adults in our sample’s groups rankings: Men ranked the research topic “Treatments and Interventions” as higher than women and NB adults and ranked “Infrastructure” as lower. These differences in rankings may be due to the nature of existing treatments, interventions, and infrastructure systems available to the community. Due to the greater proportion of individuals assigned male at birth among those diagnosed with autism, interventions and resource systems may be shaped around needs associated with more “stereotypically male” individuals and may therefore be less desirable or effective for those who don’t identify with this group.

Differences by gender in the participant ranking of existing questions warrant the discussion of what different autistic adults identify as important research questions when prompted. Our content analysis of responses to Q1, “Are there any questions that weren’t covered by the previous seven questions that you think should be investigated by researchers? If so, please specify” and Q2, “If you could choose one thing about autism to be researched in the coming decade, what would it be?” revealed five key themes present among answers to both Q1 and Q2: (1) Characterization, (2) Societal Change, (3) Well-Being and Trauma, (4) Diagnosis and Healthcare, and (5) Accessibility and Services. Each had sub-themes that, altogether, encompass nearly all of the seven key areas of the IACC research priorities. However, it is important to consider that these research questions are neither funded nor prioritized by stakeholders equally. Our results highlight the misalignment between research topics that are heavily funded and those that are prioritized by stakeholders. For example, the IACC question, “What causes ASD and can disabling aspects be prevented or preempted” (i.e. Risk Factors) receives the second-highest research funding and was the only IACC topic not identified as a priority by autistic adults in the current study. In contrast, the IACC question, “How can we meet the needs of people with ASD as they progress into and through adulthood” (i.e. “Lifespan Issues”) receives the least amount of funding yet was represented in the sub-theme “Understanding aging and adulthood” and throughout other main themes such as “Diagnosis & Healthcare” and “Accessibility & Services.” Indeed, a recent commentary highlights the importance (and lack) of research studying autism in older ages, which suggests that stakeholder priorities reflect a much-needed shift in the field of autism research.⁴⁹

More pertinent to discuss are the research questions identified by autistic adults as important research areas and top priorities in Q1 and Q2, but which lack representation among top IACC areas of focus. Research on “Societal Change” was a main theme in the qualitative analysis, having been identified by 44% of participants as important (Q1) and by 26% of participants as their top research priority over the next decade (Q2). Questions under this theme, along with those under sub-themes of research aimed at “Characterizing autism in female and non-binary people,” “Training healthcare providers,” “Understanding co-occurring conditions,” and “Understanding trauma,” are not currently key elements of the IACC Strategic Plan. The participant-identified need for research in understudied areas such as trauma is echoed by a recent review that emphasizes the need for a collaborative approach with stakeholders when it comes to developing measurements and treatments for trauma in the autistic population.⁵⁰ Overall, the input from autistic adults in the current study suggests that a shift in the current IACC Strategic Plan may be needed to better encompass the goals of the autistic community.

The importance of centering autistic perspectives, particularly those from minoritized gender groups, is underscored by the subtle but important differences found among topics identified in Q1 and Q2 when viewed according to gender groups. Many of the research topics identified by only women and NB adults in the sample were also those not represented within the IACC framework, such as “Characterizing autism in female and non-binary people” and “Training healthcare providers.” It is worth noting that many of the responses coded into these sub-themes were asked in the context of improving the recognition and diagnosis of women, girls, and non-binary individuals and thus were also coded alongside the sub-theme of “Improving the diagnostic process.” Interestingly, the sub-theme “Improving the diagnostic process” was also identified as a top priority in response to Q2 only by women and NB adults. In recent years, research and media have placed a much-needed spotlight on capturing the experiences of individuals who were assigned female at birth and received a misdiagnosis or a later diagnosis,^28,31,51,52 and our qualitative analysis has revealed a gender-driven prioritization from stakeholders in this emerging area of focus. Other topics identified as a top priority by only women and NB adults included research on aging, stigma, and neurodiversity. In addition, only women and NB adults brought up research aimed at “enhancing supports in education and employment” in Q1 and Q2. While this does not suggest that men and boys do not struggle in school or with employment, it may reflect the different societal hurdles that those who are not men face within these settings. Autistic women and girls have reported different needs and experiences at school and work,^30,38,53,54 and NB autistic people face the additional challenge of being multiply-minoritized by society: NB people experience heightened stigma toward their gender in settings already difficult to navigate for autistic people.⁵⁵

Existing research suggests that trauma and stigma may have particularly strong impacts on the mental health and well-being of TGD autistic individuals,⁵⁶ which may explain the identification of such topics as high priorities by NB adults in the current sample. NB individuals are the most underrepresented gender group in autism research, a statistic that showcases a particular need for their priorities to be elevated.⁵⁷ The high rate of overlap between autistic and TGD populations, coupled with the high self-report rate of gender diversity in other groups in the current sample, highlights the need for better research and informed care for TGD autistic individuals.

The results from this mixed-methods study shed light on gendered perspectives on existing autism research priorities and begin to explore the specific autism research priorities put forth by gender minorities within the autism community. Taken together, our ranking and thematic findings indicate the necessity for autism research to place further attention to meeting the needs of the autism community. Differences between stakeholder groups—according to gender identity or other lived experiences—are important to note and consider for future research, particularly with regard to research areas highlighted as important only by underrepresented individuals. We suggest that when working with autism community stakeholders, researchers should be mindful of important differences in stakeholder identity. Given their lived experience and unique perspectives, researchers should defer to the expertise of autistic adults,⁵⁸ particularly in terms of early intervention and supports. In anticipation of their next research strategy, the IACC has invited public engagement in their meetings and development process. In addition, as of 2021 the IACC member body is made up of nearly one-third autistic adults.⁵⁹ Considering these changes along with the results of the current study, it is expected that the alignment between existing research and stakeholder priorities will be improved.

Limitations and future research

By assessing the research funding priorities of a group of autistic adults across ages and gender identities, this study provides novel insight into stakeholder priorities for autism research. However, this study has several limitations worthy of discussion. The majority of our study team are non-autistic, which may have influenced the design of the survey and the interpretation of results in the current study. In an effort to address research priorities based on gender identity alone, we chose not to ask autistic participants to report their assigned sex at birth, nor did we ask if their gender was different than their biological sex. As such, we inadvertently may not have accounted for certain minoritized genders, including transgender men: these individuals would have been categorized as simply “men” and grouped with men who were assigned male at birth. In addition, the recruitment avenues used (social media, email) and our online survey format may have excluded individuals with different support needs, such as those with difficulties with attention, literacy, or screen sensitivity, and thus may not represent the full breadth of experiences and priorities for autism research.

Our sampling strategy, focused solely on gender identity, did not adequately capture underrepresented identities in terms of race or ethnicity. Similar to NB autistic adults, individuals with minoritized racial and ethnic identities experience compounded stress and discrimination. Future studies should consider race and ethnicity when examining stakeholder priorities to assess whether the current research and funding landscape is adequately serving minoritized or multiply minoritized populations. Similarly, we acknowledge that the depth of the current study’s focus on gender identity, along with the survey question and content analysis methods used, do not allow for a nuanced view into other aspects of an autistic individuals’ life that may contribute to their prioritization of research. In addition to race and ethnicity, factors such as a person’s education, age at the time of their autism diagnosis, and their present living situation may all play a role in shaping their priorities. Future research, including our ongoing analysis of follow-up interviews with participants in the current sample, should examine these factors.

Finally, while our larger study did follow up with certain participants regarding their endorsement of given research topics, the single timepoint of our survey administration did not allow us to gauge whether or how much stakeholders and stakeholder groups would endorse the themes generated by their responses. For example, no NB adults brought up research questions related to “understanding aging and adulthood” in response to Q1 and Q2, but they may have identified this topic as important if probed further. Future studies by researchers and funding organizations should seek additional feedback on stakeholder-generated priorities in order to confirm these initial findings and assess cohesiveness within the autism community. In addition, future studies may aim to explore how certain lived experiences may shape stakeholder priorities for research.

Conclusion

Women and NB adults have been historically underrepresented in autism research and in the broader autism community. This study highlights their unique perspectives and priorities on autism research topics and underscores a critical need for gender diversity in autism research. We encourage autism researchers and funding organizations to seek diverse perspectives regarding the direction of their work in order to identify, center, and support all autistic individuals.

Supplemental Material

sj-docx-1-whe-10.1177_17455057231160342 – Supplemental material for How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study

Supplemental material, sj-docx-1-whe-10.1177_17455057231160342 for How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study by Orla C Putnam, Genessa Eddy, Jessica Goldblum, Madison Swisher and Clare Harrop in Women’s Health

Supplemental Material

sj-docx-2-whe-10.1177_17455057231160342 – Supplemental material for How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study

Supplemental material, sj-docx-2-whe-10.1177_17455057231160342 for How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study by Orla C Putnam, Genessa Eddy, Jessica Goldblum, Madison Swisher and Clare Harrop in Women’s Health

Footnotes

Acknowledgements

We thank the autistic adults who participated in this study and gave valuable feedback to this research. We thank Cathy Perry for her administrative work on the project and MaryBeth Grewe for providing methodology consultation. In addition, we thank the Autistic Women and Nonbinary Network (AWN) and Renee Duffee Clark for their assistance in participant recruitment.

Declarations

ORCID iDs

Orla C Putnam

Jessica Goldblum

Clare Harrop

Supplemental material

Supplemental material for this article is available online.

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