Abstract
Background:
Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ).
Methods:
Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups (n = 55) and an online survey (n = 450). Almost 40% of the survey respondents indicated that they were autistic.
Results:
The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Māori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whānau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners).
Conclusions:
We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.
Community brief
Why is this an important issue?
There are no previous autism research priorities for Aotearoa New Zealand that have been determined by the autistic and autism communities. The population characteristics and social and cultural context of Aotearoa New Zealand (NZ) are unique.
What was the purpose of this study?
We wanted to find out what the autistic and autism communities think future autism research should focus on.
What did the researchers do?
Autistic people were essential partners in this project and contributed to the design, methods, and outputs. We carried out focus groups and an online survey of autistic people and members of the broader autism community (family, practitioners, and researchers) in NZ. In the focus groups, we asked 55 people what they thought future autism research in NZ should focus on. Three researchers (one autistic and two non-autistic) analyzed the focus group data. They read the written transcripts of the focus groups. Then, they met multiple times to talk about what they thought the ideas were and agree on the final ideas (themes). In the online survey, we asked 450 people to rate how important different autism research topics were to them. To analyze the survey data, two researchers looked at how important each autism research topic was for different community groups, including autistic adults, family, practitioners, and researchers.
What were the results of the study?
The results showed that the community thought future autism research should focus on the experiences of autistic people, particularly of autistic New Zealanders. Community members also thought that it was important that there is autism research that is specific to NZ, including culturally specific research for Māori and Pacific peoples. The five topics rated as most important by autistic adults were also priorities for at least one other group of people from the autism community (e.g., practitioners). Health, mental health, and well-being of autistic people was a priority topic for all groups.
What do these findings add to what was already known?
These findings tell us what autistic adults think is important for future autism research in NZ to focus on. The findings also show us the similarities and differences between what autistic adults think is important for future autism research, and what other people in the broader autism community think is important.
What are the potential weaknesses in the study?
The focus groups and online survey may not have been accessible to everyone who would like to take part. So we may have missed the opinion of some people.
How will these findings help autistic adults now or in the future?
We have determined what is important to autistic people and the broader autism community for future autism research. We can use this information to inform future autism research in NZ. Funding bodies can use this information to inform their decisions about funding for autism research. We hope that the way we included autistic adults in this project will also inspire other autism research in NZ, which will make autism research more appropriate, relevant, and ethical.
Introduction
Autistic people have been dissatisfied with the level of community engagement in autism research and refer to “being treated like a guinea pig.” 1 Community partners, including autistic people, parent/carers, and service providers, have described the experience of power imbalance in their involvement in autism research, such as exclusion from key planning meetings and decision-making. 2 One consequence of this lack of authentic engagement with autistic people in autism research is an incongruity between patterns of funding and community priorities.
There is a historical global trend in the pattern of autism research funding, which is skewed to biology research. In an international comparison of autism research funding in 2016 across four countries (United States, United Kingdom, Canada, Australia), the Interagency Autism Coordinating Committee 3 reported that biology research received the greatest proportion of funding in three of the four countries: the United States (35%), United Kingdom (64%), and Canada (40%). Across all four countries, a smaller proportion of funding was awarded to research on services (1%–10%) and life span issues (2%–11%).
The report recommended that funding should be prioritized for research on (1) treatments and interventions, (2) evidence-based services, and (3) life span issues. Despite such recommendations, this skewed pattern of funding for autism research has continued in the United States4,5 and Australia. 6 The first portfolio analysis of autism research funding in Aotearoa New Zealand (NZ), reported a pattern consistent with global trends. 7 Between 2007 and 2021, the greatest proportion of funding (number of grants and financial investment) was awarded to biology research (67%), followed by research on treatments and interventions (31%); no funding was allocated to services, or life span issues. Both the autistic and autism communities reported disappointment and dissatisfaction with this pattern of funding. 7
One way to realign autism research with the views of the community is to meaningfully include autistic people in the research process. 8 Participatory research design (PRD) offers a community-centered model, which challenges the power imbalance between researcher and participant and seeks to enable meaningful inclusion of autistic people in the research process. 9 One manifestation of this has been to establish community priorities for autism research. Shifting the focus of autism research to community priorities can improve the outcomes of research and translation into practice and policy, progress autism acceptance and inclusion in society, 10 and ultimately improve the daily lives of autistic people.
In a systematic review, Roche et al. 11 identified seven studies that reported the research priorities of the autistic and autism communities utilizing focus groups, interviews, online surveys, and scoping reviews. These studies reported data collected from more than 20 countries across Europe, North America, and Australasia, with a majority from the United Kingdom, the United States, and Canada. The authors described three overarching priority areas across the reviewed studies: (1) skills development training from childhood into adulthood and employment; (2) physical health, well-being, and mental health; and (3) expertise, coordination, availability, and accessibility of services across the life span.
Only 9% of the combined sample across studies identified as autistic; thus, these emerging priorities mostly reflect the views of families (61%) and professionals (24%). Four studies in the review reported the priorities of specific groups; the priorities of autistic adults focused on skills development for autistic people, accurate public awareness, and autistic inclusion in research and community, whereas parent/carer priorities were focused on early identification of autism, interventions, and supports. The representation of autistic people and preservation of their views should be fundamental to community priority setting since they are the ultimate beneficiaries of autism research. 12
There has been no documented community priority setting for autism research undertaken in NZ. The demographic and sociocultural context of NZ is unique, as are the services and supports currently available to autistic people and their carers. It is vital that the unique perspective of Māori, the tangata whenua (indigenous people) of NZ, is included and informs future autism research and practice. The variety of funding bodies, and the mandates, priorities, and mechanisms for distributing funding are also likely to be specific to this context. Therefore, to better inform future autism research in NZ, we aimed to determine the priorities of autistic New Zealanders and the broader autism community. We set out to address a key limitation of previous research in relation to inadequate autistic involvement. Using PRD, autistic people were involved as partners in the project, from inception and design through to methods and outputs. In this mixed-methods study, we gathered the views of the community in the focus groups and a survey. We compared the priorities of autistic people with those of family members, practitioners, and researchers to determine points of overlap and difference.
Methods
Community partnership
The project team included autistic and non-autistic researchers and were supported by two advisory groups. The Autistic Advisory Group was a group of autistic adults, with multiple interests in autism research (e.g., parent, researcher), and was chaired by an autistic researcher from the research team. The project lead (non-autistic researcher) attended early Autistic Advisory Group meetings but did not attend later meetings regarding the interpretation of data. The Partnership Advisory Group included representatives of the Autistic Advisory Group, the project team, autism researchers, autism practitioners (health care, disability, and education), national autism organizations, and family.
Both advisory groups met on three occasions, coinciding with key milestones: (1) design of the focus groups, (2) design of the online survey, and (3) interpretation of the data. The Autistic Advisory Group met first and provided feedback into the Partnership Advisory Group, who in turn provided further feedback to the project team to action in the conduct of the research activities. The structure and process of involvement of the advisory groups were determined by the project team and based on individual consultation with autistic community members. Advisory group discussions informed recruitment procedures, design of the focus groups and online survey (e.g., questions and rating scales), and the interpretation of data.
Community consultation
We gathered the perspectives of the autistic and autism communities through the focus groups and an online survey.
Participants and procedure
Focus groups
Fifty-five people participated across a series of 11 focus groups, which were exclusive to stakeholder groups. Two focus groups were conducted for each of the following stakeholder groups: autistic adults (n = 13), parents, family, and whānau (extended family) of an autistic person (n = 12), autism researchers (n = 7), health care practitioners (n = 10), and education practitioners (n = 7). In addition, one focus group was conducted for Māori (n = 3 mothers of autistic children) and one for Pacific peoples (n = 3; two fathers and one mother of autistic children) to capture the unique cultural perspectives of these groups in NZ. Demographic information about people who took part in the focus groups is reported in Table 1. Snowball recruitment included national advertising by members of the project team, advisory group members, through autism organizations, Facebook groups, practitioner networks, parent groups, and education sectors. Following informed consent, individuals self-selected which stakeholder focus group to be part of.
Demographic Information for the Focus Groups by Stakeholder Group (Number of Subsample)
Note: One focus group family member did not disclose their age. Information on ethnicity was not recorded for the focus groups. Information on age was not recorded for individuals who participated in the focus groups for Māori and Pacific peoples.
Each focus group was facilitated by a member of the research team. The autistic adults' focus group was facilitated by an autistic researcher. The facilitator posed key questions to facilitate discussion. A second facilitator took notes, summarized the key points from the discussion, and asked for final contributions. Cultural advisors co-facilitated the groups for Māori and for Pacific peoples, supporting the main facilitator to adhere to culturally appropriate practices, and providing cultural context in the discussion where relevant.
Two main questions were posed to facilitate focus group discussions (and one specified prompt): (1) What questions do you think future research should help us to answer about autism? and (2) How can research enable Autistic people to lead the life they would like to live? (additional prompt: When thinking about this question, you might want to consider what would have the most meaningful impact for Autistic people). Further questions posed by the main facilitator aimed to clarify any statements that were unclear or ambiguous. All focus groups were 60 minutes and held on Zoom. Individuals could contribute verbally and/or by using the chat function. The focus groups were recorded (audio/video/chat), and a combined transcript of all contributions was produced for each group.
Online survey
A convenience sample of 450 people completed the online survey (690 people consented to the survey; 240 incomplete surveys were excluded). We utilized a snowball method of recruitment; project information was initially disseminated through networks of the project team, advisory group members, a press release, and national media engagement (e.g., radio appearance) and social media posts. The survey was open to adults in NZ who self-identified an interest in autism research. Following informed consent, individuals indicated their primary interest in autism research, which was used to code their stakeholder group. Six people who selected “not listed” and specified autistic parent/whānau were coded in the Autistic person stakeholder group. In addition, individuals were asked if they had a secondary interest in autism research and provided demographic information about themselves including age, gender, and ethnicity (Table 2).
Demographic Information for Online Survey Respondents by Stakeholder Group (Number and Percentage of Subsample)
Note: Fifteen survey participants did not disclose their gender. Pacific Peoples includes Pasifika and Samoan. European includes British, Dutch, and Scottish. Asian includes Chinese, Japanese, Korean, Indian, Sri Lankan, and Filipino. Other ethnicity includes North American, n = 8; African, n = 2; Australian, n = 5; White/Caucasian, n = 7. Individuals declined to disclose their gender = 17, ethnicity = 39.
The proportion of people in each stakeholder group was as follows: autistic person, n = 151 (33.6%); parent or carer of an autistic person, n = 189 (43%); family member of an autistic person (including two siblings, two spouse/partners, and three extended family), n = 7 (2%); health care/disability practitioner, n = 52 (11.6%); education practitioner, n = 42 (10%); autism researcher, n = 9 (2.4%). Autistic people could self-identify and were not required to have a formal diagnosis of autism to complete the survey. Table 3 shows the proportion of people within each stakeholder group who selected a secondary interest in autism research. Across all survey respondents, 176 (39%) people identified as autistic (151 autistic stakeholder group and 25 secondary interest as an autistic person).
Secondary Stakeholder Group Indicated By Survey Respondents by Primary Stakeholder Group
Survey respondents were presented with a list of 32 autism research topics (Supplementary Data), informed by the focus group data, and including priority topics from previous studies.11,13 These topics were presented in four sections representing broad research areas: Needs and Supports; Inclusive Communities; Aotearoa autism research; Autistic experience (consistent with focus group themes). Participants rated the importance of each research topic to them on a 5-point Likert scale (Not important–Very important), or selected “Prefer not to answer/Don't know.” Participants could also submit qualitative comments.
The survey was open for 2 months (November–December 2021) and hosted on Qualtrics (Provo, UT). Alternative forms of the survey (e.g., paper, translations) and support from the research team to complete the survey were available on request. Respondents could also indicate if they were supporting someone to complete the survey.
Data analysis
Focus groups
Focus group discussions were transcribed by a non-autistic researcher. Two non-autistic researchers, with experience in qualitative methods and autism research, analyzed the focus group data using reflexive thematic analysis. 14 Both researchers coded the data independently, then together they reviewed and collated these codes into common themes relating to research priorities for each participant group. Individuals from the focus groups were given the opportunity to offer feedback (or amendment of quotes) on a written summary of these initial themes. This feedback was integrated into a subsequent iteration of the themes. Two additional researchers (one autistic and one non-autistic) reviewed these themes and summarized them across all participant groups, drawing out points of commonality and difference. This summary was shared with the advisory groups, who provided further commentary on the interpretation of the focus group data, which was integrated into the final themes reported here.
Online survey
Survey data were analyzed in SPSS (version 27). Descriptive statistics for importance ratings was determined by stakeholder group (i.e., primary interest in autism research), including means and standard deviations (SDs), and mode response. Between-group differences on importance ratings were assessed using the Kruskal–Wallis analysis of variance (ANOVA) and subsequent pairwise comparisons with the Mann–Whitney U tests (with the Bonferroni correction). We examined the top five most important topics by stakeholder group, ranked according to the “very important” endorsement rates (where there were multiple topics ranked 5th, and then, we report the topic rated highest by “important” ratings).
Qualitative comments submitted by respondents were coded by two independent researchers and used to provide further qualitative description of the top topics. Qualitative comments that were not coded against existing survey topics were submitted by a small range of people (1–9) (e.g., experiences of autistic girls and women). As these suggestions had not been included in the topics that were presented to and rated by the whole sample, no further quantitative analysis was considered appropriate within the scope of this study (i.e., comparison of importance across groups to indicate priorities).
Ethical approval for this study was granted by the Human Research Ethics Committee at the University of Canterbury, Aotearoa New Zealand (Ref. 2020/134).
Results
Focus groups
Four overarching themes represented the priority research areas of all groups; subthemes represented more specific autism research topics to emerge from one or more group.
Needs and supports
This theme captured two research questions that emerged from the focus groups (1) What are the needs of autistic people in Aotearoa New Zealand? and (2) What supports are helpful for autistic people across the life span and in different settings?
All community groups indicated the value of first understanding the needs of autistic people, and how this knowledge could be applied toward enhancing a person's life, working with someone's strengths and promoting acceptance.
“Working out what autistic people want from supports and I guess therapies, if we want them” (Autistic adult)
“I'd be really keen to see from the voices of autistic people themselves what they would feel would benefit them having a better life” (Whānau)
“I think having a really strong autistic perspective about how we identify people's support needs and how we work with their strengths so it's something that needs to be informed by this community” (Healthcare/disability practitioner)
Across all the focus groups, there was an echoing of the view that the autistic perspective should be central to understanding the needs of autistic people and designing appropriate supports. Specific areas of priority for research on supports included improving access and determining those supports that are beneficial to the mental health, communication, and sensory needs of autistic people, as well as well-being of their family. Supports across the life span were emphasized, including transition from childhood to adulthood as a particular focal point for future research. Multiple groups highlighted that the design of supports should be strengths-based, autism-specific, and culturally grounded. Support for parents/carers emerged from multiple groups, as well as training for professionals.
Across multiple groups, research on improving diagnosis was highlighted, including improved criteria that account for differences and diversity in autism characteristics (e.g., across the life span and genders), and autism-friendly processes.
“What are the barriers that are meaning girls are not getting diagnosed?” (Education professional)
“We use a lot of tests that, or sort of assessments that are not particularly well designed for people on the spectrum … design newer tools in collaboration with the autism community” (Researcher)
Relatedly, research on the incidence of autism and co-occurring conditions was highlighted by multiple groups, including among children who do not attend school, and those in the justice system.
Autistic experience
This theme represented a priority for autism research to be centered on understanding the experiences of autistic people, including experiences throughout the spectrum of support needs and life span. Multiple groups suggested conducting research with autistic adults to understand their experiences through childhood. In particular, experiences of therapies and supports, and education.
“I definitely feel like we should be listening to autistic adults. A lot of people don't realize that an autistic adult grew up from an autistic kid. Autism is neurodevelopmental and stays with you forever. Thus, these autistic adults have gone through all these life skills and learned how to cope in the world in a way.” (Whānau)
Inclusive communities
This theme centered on future autism research that determines how community settings can be inclusive for autistic people, including education and workplace settings.
“Whether it is easier for Autistic people to gain employment if they are in an interview situation where they get to do it by text or if they're in an interview situation where they get to have the questions and things that they will be asked all laid out beforehand. Whether that has positive outcomes for employers as well.” (Autistic adult)
“Do we have barriers in our systems for neurodivergent people to become a psychologist, to become a speech therapist? because that's what I'm hearing in my role.” (Healthcare/disability practitioner)
Culture: Aotearoa
Multiple groups highlighted the need for NZ-specific autism research, including how to best adapt and apply overseas research, the incidence of autism and diagnostic processes in NZ, and quality of life of autistic New Zealanders. The intersection between culture and autism was also highlighted, including how best to support people from cultures that may have different views on autism and autistic people. Within the Māori focus group, the discussion highlighted the need to undertake autism research from te ao Māori (Māori worldview), to support tino rangatiratanga (self-determination), and embed Māori tikanga (cultural practices). These principles extended to education and supports. Within the Pacific peoples focus group, the discussion of culture and autism included questions about bilingualism, what strengths culture may offer, and how cultural practices can be inclusive of autistic people.
“The outward expressions of culture whether that's dancing or singing that's a big part, … In some instances, but particularly say with kapa haka for Māori, you know, kids in wheelchairs and stuff are starting to be, you know, more present on stage and yeah hopefully sort of finding ways … how autistic tamariki or adults can participate” (Parent/carer, Māori)
“I definitely think there could be a lot more research into, you know, how does, yeah, culture coexist with autism, what are some of the strengths of Pasifika culture, more generally, in terms of, you know, commonality and our family ties, extended.” (Parent/carer, Pacific peoples)
Online survey
Full descriptive statistics and group comparisons for importance ratings are reported in the Supplementary Data. The mode response across each group was either 4 (important) or 5 (very important) for most topics. The mode response for two topics deviated from this pattern: for “Use and adaptation of overseas autism research in NZ,” the mode response was 3 (moderately important) for researchers; for “Traditional natural medicines,” the mode response was 4 for health and disability practitioners, and 3 for education practitioners, compared with a mode response of 1 for autistic adults, researchers, and whānau/family.
Group differences
The Kruskal–Wallis ANOVAs indicated between-group differences across almost all topics; however, subsequent pairwise comparisons confirmed a smaller number of significant differences (Supplementary Data). Most significant group differences related to lower ratings by autistic adults compared with other groups: Education/school was rated higher by all other groups compared with autistic adults [H = 25.45(4), p < 0.001]; Family and carer support was rated higher by whānau, and both practitioner groups (education, and health care/disability) compared with autistic adults [H = 67.7(4), p < 0.001]. Topics relating to cultural-specific, and culturally grounded education [H = 28.25(4)] and supports [H = 35.24(4)] were rated higher by practitioner groups than autistic adults and whānau groups (p < 0.001). The researcher group rated Diagnostic process in NZ [H = 10.88(4), p = 0.28], and Cognitive, thinking, and learning styles of autistic individuals (H = 25.42, p < 0.001) lower than all other groups. Similarly, Training for professionals was rated lower by researchers compared with whānau, and both practitioner groups [H = 18.39(4), p < 0.001].
Top five topics by stakeholder group
Table 4 shows the top five topics for each stakeholder group. Health, mental health, and well-being of autistic people was a priority for all groups and ranked number one for all groups except for whānau (ranked second to Education/School). Health, mental health, and well-being of autistic people was the only topic that was common to the top five of autistic adults and researchers. The qualitative comments coded within this topic highlighted research into specific areas of need, including sensory processing supports, communication (e.g., augmentative and alternative communication supports) sleep, relationship counseling, as well as co-occurring conditions (e.g., other neurodivergence, intellectual disability, physical health, trauma, and mental health). Further comments relating to mental health specifically highlighted anxiety, autistic burnout, and the intersection with gender as points of importance.
Top Five Topics for Each Primary Interest Group (Percentage Rating “Very Important”)
Expertise, coordination, availability, and accessibility of services across the life span was a priority for the autistic adults group and the two practitioner groups (education and health care/disability). The qualitative comments coded under this topic, referred to five particular points of focus for research: (1) identifying ways of overcoming barriers to access to information and support—specifically citing discrimination within mainstream services or services outside of disability services; as well as improving free public access to information and resources about autism and well-being for autistic people (e.g., library, workshops, conferences); (2) helpful and relevant supports for adults and older adults (e.g., “autism and ageing”); (3) autistic-specific services, supports, and knowledge (e.g., “autism informed therapy”; (4) services for caregivers and whānau, including “autistic parents,” “sibling studies,” parenting support, and “parental wellbeing”; (5) accessible and relevant supports relating to culture—including for Māori, Pacific peoples, and minority ethnicities in NZ.
The remaining three priorities of autistic adults were also a priority for one other group. Qualitative comments about the Needs of autistic people in Aotearoa (autistic adults; whānau) highlighted co-occurrence or intersection with other conditions, such as additional neurodivergence, neurological, chronic health, intellectual disability, and trauma. Comments relating to Perspectives from Autistic people with a diverse range of support needs (autistic adults; education practitioners) highlighted the need for research to include the experience of underrepresented groups of autistic people, including those who do use alternative communication methods to speech and older people, particularly those living in residential environments. No qualitative comments were submitted in relation to Quality of life of Autistic people in Aotearoa (autistic adults; health care/disability practitioners).
Education/School was not in the top five priorities for autistic adults but was a priority for all other groups; this topic was also rated significantly lower by autistic adults compared with other groups. Qualitative comments coded within this topic highlighted access to educational environments, effective approaches to home schooling, and the impact of mainstream secondary school environments on the well-being of young autistic people.
Training for Professionals was a priority for whānau and practitioner groups. Qualitative comments specified research relating to autism knowledge and understanding for all professionals, rather than just specialists, specifically citing education practitioners, police, judicial system, social workers, and all medical professionals (e.g., general practitioners). In addition, the comments highlighted autistic-led training for professionals. Supporting skills development from childhood into adulthood was also a priority for whānau and researchers; no qualitative comments were submitted relating to this topic.
The researcher group were the only group with priority topics that did not feature in the top five topics of another group, including: Workplace/employment; such as access to and support into work, the design and benefits of employment services, and professional development for autistic people in the workplace; and Culturally grounded supports (no qualitative commentary was submitted for this topic).
Discussion
We aimed to determine the views of the autistic and autism communities in Aotearoa New Zealand on future autism research. The research team worked in partnership with two advisory groups who represented people from the autistic community and the broader autism community. These groups contributed to the design of the community consultation, which included the focus groups and an online survey. The community stakeholder priorities indicated by the findings from the focus groups and the online survey highlighted the importance of research that centralizes the experiences and needs of autistic people with a diverse range of support needs, and particularly of autistic New Zealanders.
Furthermore, there was a call for research on appropriate and beneficial supports and services for autistic people across the life span, with an emphasis on specific needs (e.g., mental health, sensory), contexts (e.g., education/school), and professional knowledge of autism (e.g., professional training). The design and implementation of supports for autistic people need to be grounded in an understanding of their needs, which includes the perspectives and experiences of autistic people. Indeed, the focus group findings suggest the idea of autistic-led professional training, and redesign of diagnostic processes with autistic people to ensure that they are autism-friendly, and inclusive of diversity within autism.
Community members emphasized the importance of autism research that is specific to NZ, including culturally specific research for Māori and Pacific peoples. Previous research has noted that there is a scarcity of published kaupapa Māori (Māori research) in the field of autism 15 and a distinct lack of grant funding awarded for such research. 7 NZ is a bicultural nation; te tiriti o Waitangi (Treaty of Waitangi) indicates the commitment to partnership to ensure that the specific needs of Māori are actively protected. Given the known health inequities faced by Māori, 16 and cultural minority groups in NZ, the culture-specific priorities highlighted in this study require attention by researchers and funders.
The current survey findings suggested that the majority of topics were important to all groups, as indicated by the high mode responses across topics. This is unsurprising given that the list of survey topics were composed of those considered important by the focus groups of the current study and community priorities from the previous literature. 11 When drawing comparisons between participant groups, there were many points of agreement across the five most important topics (priority topics) and relatively few statistical differences in importance ratings. All five priority topics for autistic adults were also priorities for at least one other group, with two–three topics overlapping with the priorities of family/whānau and both practitioner groups, and one topic overlapping with the priorities of the researcher group.
Health, mental health, and well-being of autistic people was a priority topic for all groups. This finding is consistent with priorities from previous research; physical health, well-being, and mental health was a priority in four of the seven studies reviewed by Roche et al., 11 which included people from multiple countries. In NZ, autistic people are six times more likely to experience a mental health condition than their non-autistic peers (68.2% autistic vs. 10.5% non-autistic). 17 Furthermore, autistic people face inequities in accessing appropriate mental health support and have reported that barriers include a lack of autism-specific approaches and therapists with autism experience. 18 These barriers relate directly to two further priority topics from our survey findings: Expertise, coordination, availability, and accessibility of services across the life span was a priority for autistic adults and both practitioner groups; and Training for professionals was a priority for family/whānau and both practitioner groups.
The call to prioritize autism research relating to services by autistic adults and practitioner groups echoes previous research8,11 and highlights a common experience of inadequacy of the current provision of services for autistic people across the life span. Indeed, the related qualitative comments indicate specific areas for research, including the design of services that are autistic-specific and culturally relevant to NZ, as well as widening the availability of information for autistic people into mainstream, free-to-access public places (e.g., libraries) and platforms (e.g., media). Respondent comments also highlighted research into beneficial services for caregivers and whānau, although this did not emerge as a specific priority topic in and of itself for any group, and the group differences indicated that this topic was more important to family/whānau and both practitioner groups than to autistic adults.
Training for professionals was a priority research topic for family/whānau and both practitioner groups and was rated as significantly more important by these groups compared with researchers. Again, this finding may highlight a common experience by both professionals and those who seek their support, which relates to the limitations of the status quo in NZ and practitioner confidence. 19 Autism research on creating an inclusive Education/school environment was a top five priority for all groups except autistic adults; this topic was also rated significantly lower by autistic adults than other groups. This finding may reflect the relevance of the topics to the stage of life of the survey respondents. Within the family/whānau group, the majority of parents/carers reported that their autistic child/children were younger than 18 years (M = 14.11, SD = 8.10), so education and school is likely to be of high relevance to this group in comparison to the priorities consistent with the life stage of autistic adults.
Our findings have some degree of overlap with previous priority setting research, including research on the health, mental health, and well-being of autistic people and public services.8,11,20 However, the priorities from this study are also differentiated from previous studies by the emphasis on the unique cultural context of NZ and the centralization of the experience of autistic people in future autism research. This latter emphasis on autistic experience may reflect the higher proportion of autistic people who participated in this study compared with similar previous studies. Roche et al. 11 highlighted a general underrepresentation of autistic people in previous studies, with only a small proportion identifying as autistic (e.g., 4%; 21 6%; 20 8.5% 8 ). In our online survey, almost 40% of the respondents indicated that they were autistic, and in our focus groups, almost 24% of people were autistic. That said, the importance of autistic inclusion was highlighted by multiple focus groups in this study, so is clearly a priority across the autism community.
The greater proportion of autistic representation in our study is a particular strength and could be a reflection of the PRD approach, such that autistic people and people from the broader autism community influenced the methods of recruitment, community consultation, and interpretation of data (project team and advisory group structure). Furthermore, the autistic people who took part in our study had a broad range of secondary interests in autism research, including autistic parents and autistic researchers. While we endeavored to design the study to be accessible to a broad range of people and to support different communication methods, the methods of dissemination of information via the internet could have biased the sample of people taking part. Future research could utilize methods of recruitment and engagement that are in-person and based in centers of community (e.g., support living) to increase the diversity of the people and views represented.
The limited overlap in priority topics between autistic adults and researchers highlights a potential discrepancy between the beneficiaries of research (autistic people) and those conducting the research in NZ. This discrepancy between community and researchers warrants further investigation in future research; greater alignment between these groups in particular will contribute to ensure that autism research has relevance and greater potential impact on the daily lives of autistic people. Although researchers did not prioritize topics relating to services and professional training, they are in a position of influence in relation to improvements in design and translation to practice.
Health research is often biased by questions of effectiveness and establishing an evidence base for specific therapies and supports. But when it comes to translation to practice, and improving access for autistic people, then issues of relevance, acceptability, and appropriateness of those supports and services are paramount. Autism research needs to specifically consider these needs through the research design, as well as the structures that would deliver these supports. Models of implementation science and co-design should be central to the evolution of research on services and supports for autistic people.
As the ultimate beneficiaries of autism research, it is paramount that the viewpoints of autistic people are included and retained in autism research. In this study, we have highlighted the specific areas of autism research that are considered most important by autistic people, and people from the broader autism community, in NZ. These areas of research are in contrast with the documented global and local pattern of funding for autism research, which is biased toward biological research.3,7 This study documents the priorities of the community for future autism research; action is needed from those who currently wield power, specifically funding bodies and researchers, to ensure that these priorities are research programs and funding allocation.
In their analysis of autism research funding in Australia, den Houting and Pellicano 6 examined whether there was a shift following the establishment of the Cooperative Research Centre for Living with Autism (Autism CRC). The Autism CRC mission was to “motivate, facilitate, and translate collaborative autism research across the life span, underpinned by inclusive practices.” 22 Before the inception of the Autism CRC, the majority of autism research funding was allocated to biology research. While this was still the case after the Autism CRC was established, there was increased investment in services and life span research. However, this shift in pattern was largely attributable to funding distributed by the Autism CRC. While the establishment of specific independent bodies that can facilitate community-engaged autism research is helpful, it is not sufficient. To shift the landscape toward autistic inclusion in autism research, action is required to share power through partnership with autistic people.
The power for key decisions in autism research (e.g., funding, ethics, design) has traditionally been held by non-autistics. Our findings echo a strong call from multiple international groups for greater inclusion and involvement of autistic people in the research process.2,9,23 Community inclusion in autism research should be considered fundamental to ethical autism research, in order promote the relevance of research outcomes to the lives of autistic people. PRD is time and resource intensive, and this needs to be recognized, valued, and supported. Funders and institutions are uniquely positioned to realize the necessary structural changes to support this paradigm shift in autism research. 24 Community priority setting is a pivotal part of shaping autism research which is accountable to, and in collaboration with the community. Partnership between researchers and the autistic and autism communities ensures that autism research is answering important and relevant questions, in ways that are appropriate and ethical.
Footnotes
Acknowledgments
We thank all the members of the project advisory groups for their invaluable contribution to this mahi/work. In addition, we would like to thank all people who took part in the focus groups and surveys for their time and energy.
Authors' Contributions
L.M.E.: Conceptualization, methodology, formal analysis, investigation, writing—original draft, supervision, project administration, funding acquisition. R.M.: Conceptualization, methodology, formal analysis, investigation, writing—review and editing, funding acquisition. L.v.d.M. and L.M.: Conceptualization, methodology, investigation, writing—review and editing, funding acquisition. D.S.: Investigation, formal analysis, writing—original draft.
Ethics Approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. The online survey and focus groups methodology for this study were approved by the Human Research Ethics Committee of the University of Canterbury, Aotearoa New Zealand (Ethics approval ref. 2020/134).
Informed Consent
All participating people provided their informed consent before their participation.
Author Disclosure Statement
The authors declare that they have no conflict of interest.
Funding Information
This work was supported by a Health Research Council (New Zealand) Activation Grant, Ref. 20/1237, and a University of Canterbury, College of Education, Health and Human Development Collaboration and Capacity Enhancing Grant (2021).
References
Supplementary Material
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