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. 2025 Jul 29;38(4):e70106. doi: 10.1111/jar.70106

‘It's Really Who They Are and What They Want’: Staff Perspectives on Supporting Autonomy for Autistic Adults With Intellectual Disabilities

Jackie Ryan 1,✉, Heather M Brown 2, Anne Borden 3, Christina Devlin 3, Adam Kedmy 3, Austin Lee 3, David B Nicholas 4, Sandy Thompson‐Hodgetts 5
PMCID: PMC12307767  PMID: 40731376

ABSTRACT

Background

Autonomy is a crucial component of self‐determination, yet it is limited for Autistic individuals, especially those with co‐occurring intellectual disabilities. We explored how professionals supported Autistic people with intellectual disabilities' autonomy.

Materials and Methods

This qualitative study used a community‐based participatory approach. Nine staff who worked within a post‐secondary transition programme to support Autistic young adults with intellectual disabilities were interviewed. Data were analysed using reflexive thematic analysis.

Results

The quality and depth of relationships between staff and Autistic adults with intellectual disabilities, and a safe, supportive environment, were critical to supporting autonomy. Staff also identified several skill areas that would benefit program participants to exert their autonomy, including self‐advocacy, interoceptive awareness, working with others, and understanding choices.

Conclusions

This crucial information for supporting autonomy for Autistic adults with intellectual disabilities provides a basis for enacting programme change to promote self‐determination. Recommendations for staff and programme development are provided.

Keywords: adults, autism, autistic, autonomy, intellectual disabilities, participatory research, self‐determination

1. Introduction

Autonomy, according to Self‐Determination Theory (SDT), refers to acting volitionally, willingly, and with choice (Deci and Ryan 2013) Autonomy is not synonymous with independence; one can be ‘autonomously dependent or forced into independence’ (Ryan and Deci 2006, 1562). The opposite of autonomy is when one's actions are externally controlled or coerced (Deci and Ryan 2013). Autonomy is a fundamental human right (United Nations 2006) that enhances an individual's quality of life (Ryan and Deci 2017), including for Autistic individuals (Shogren et al. 2015; Wehmeyer 1999; Weiss and Riosa 2015). Autonomy is one of three basic psychological needs to be intrinsically motivated, self‐determined and experience well‐being; the other two are competence and relatedness (Ryan and Deci 2017). Competence refers to feeling that one can effectively perform tasks as required. Relatedness refers to the sense of belonging and connection with others. These three needs are universal, including for individuals with disabilities (Ryan and Deci 2017). Supporting autonomy has positive impact on competence and relatedness (Ryan and Deci 2017).

Self‐determination requires having opportunities to be self‐determined, such as participating in transition planning from high school to postsecondary education, choosing what leisure activities to participate in, and deciding where to live. It also requires having the capacity to engage in self‐determined behaviours, such as goal setting, problem solving, and planning skills. However, where an individual lacks the capacity to be self‐determined on their own, appropriate supports can be provided to mitigate challenges (Kuld et al. 2023).

Autistic individuals experience lower levels of self‐determination than both their non‐autistic peers and those with other developmental disabilities (Chou et al. 2016; Hodgetts et al. 2018; Weiss and Riosa 2015). Furthermore, Autistic people with intellectual disabilities are among the least self‐determined people overall (Cheak‐Zamora et al. 2020). Professionals who work with individuals with intellectual disabilities, including those with co‐occurring autism, often interpret intellectual disabilities as motivational deficits, and therefore increase external control (Ryan and Deci 2017). Professionals express that they value self‐determination for Autistic youth, yet they rarely include Autistic youth in goal setting (Hodgetts et al. 2018) or transition planning (Webster et al. 2022). Rather, professionals usually just give Autistic students information (Webster et al. 2022).

People with intellectual disabilities experience greater well‐being in environments that encourage autonomy (Frielink et al. 2018). Reeve (2006) described strategies to create autonomy‐supportive environments including encouraging effort and persistence, creating opportunities for people to work in their own way, and clearly acknowledging their perspectives. Conversely, Reeve described behaviours associated with controlling environments such as giving directives and commands, giving solutions before people have time to work on the problem independently, and using ‘should’, ‘have to’, ‘must’ or ‘got to’ statements. However, Reeve's strategies were implemented with people without intellectual disabilities or autism. Bigby and Beadle‐Brown (2018) identified strategies to improve outcomes for adults with intellectual disabilities in supported living situations. Strategies included offering more choices and control, and staff being well‐trained in and practicing Active Support, a framework to enhance participants' engagement and participation in meaningful activities (Mansell and Beadle‐Brown 2012). However, Autistic people were not identified as part of Bigby and Beadle‐Brown's study. Emond Pelletier and Joussemet (2017) found support for SDT's applicability to individuals with mild intellectual disability, although their study explicitly excluded Autistic individuals. Yaar et al. (2024) piloted a goal‐setting intervention for Autistic youth and young adults but explicitly excluded Autistic individuals with higher support needs. Finally, Ryan et al. (2024) found that Autistic adults with intellectual disabilities defined autonomy as ‘being able to be themselves’ (5) and participants identified several preferred support strategies for acting autonomously such as having choice and control, being able to communicate in their own way, and being in safe environments.

While the literature identifies autonomy‐supportive strategies for people with intellectual disabilities or Autistic people, there is a lack of autonomy‐supportive strategies specifically for Autistic adults with intellectual disabilities. This is a critical gap in knowledge and service provision. Our qualitative descriptive study, guided by Ryan and Deci's (2017) SDT, aimed to explore staff perspectives on approaches to enhance the autonomy of Autistic adults with intellectual disabilities. We focussed on autonomy consistent with our study of Autistic adults with intellectual disabilities (Ryan et al. 2024) because support for autonomy positively impacts competence and relatedness (Ryan and Deci 2017). Our specific aims were to learn from staff of an autism service provider (ASP):

  • How they support autonomy for Autistic participants with intellectual disabilities, and

  • What skills, strategies and/or resources they perceive are necessary to enhance Autistic participants' autonomy.

2. Materials and Methods

2.1. Methodology

We chose interpretive description because it is flexible and adaptable, making it suitable for qualitative participatory research (Thorne 2016). Interpretive description allows active integration of knowledge from current applied practice and lived‐experience perspectives to answer research questions and inform future applied practice (Thorne et al. 2004). A community‐based participatory research (CBPR) approach informed the research process from study conception to dissemination (Fletcher‐Watson et al. 2018; Nicolaidis et al. 2011, 2019). CBPR involves engaging community members as part of the research team to ensure that the research is relevant to their needs and to facilitate translation to practice (Israel et al. 2010). A key principle of CBPR is long‐term engagement with the community partner, in this instance the ASP (Israel et al. 2001). We engaged with five Autistic Community Partners (ACP, AK, AL, AB, CD and HB who is an associate professor) and the Executive Director and the Program Manager from the ASP throughout the entire research study using a CBPR process. The non‐academic members of the ACP were compensated fairly for their time. This study was one of three studies; the other two conducted with program participants (Autistic adults with co‐occurring intellectual disability) and Autistic adults without intellectual disabilities (Ryan et al. 2024; Thompson‐Hodgetts et al. 2023). The University of Alberta's Research Ethics Board approved this study (Pro00103146).

2.2. Positionality Statements

JR has personal ties to the autism community, including being Autistic and being the mother of an Autistic young adult who participated in the ASP's programme at the time of the study. Additionally, she worked at the ASP and created the ASP's programme, although she had not had direct responsibility for it for 5 years at the time of the study. She was, however, a member of the Executive Team at the ASP at the time of the study. Rooted in nursing science, proponents of interpretive description acknowledge that having a professional relationship with stakeholders (e.g., staff) can support participant engagement, but must be balanced with researcher reflection on the potential impact of this relationship on data acquisition and analyses (Thorne 2016). To address potential biases, JR maintained accountability throughout the research process by keeping a reflexive journal and seeking feedback on her positionality from her PhD supervisor, the ACP, her supervisory committee, and other trusted colleagues. Additionally, she did not recruit participants or participate in data collection.

HB is an Autistic professor who researches thriving and belonging for Autistic people. AB is an Autistic parent of an Autistic child, and a member of her local Autistic rights community. CD is an Autistic Registered Social Service Worker with a second bachelor's degree in Disability Studies and Psychology. AK is an Autistic Linguist who supports Autistic people with higher needs than his own and often uses language, paralanguage and physical communication to assist people who experience challenges with communication. AL is an Autistic university graduate with a bachelor's degree in computer science. Their unique perspectives benefitted this research. DN and STH are both non‐autistic clinicians, scholars, and allies, with close connections to the Autistic community.

2.3. Program Description

This research was conducted within the innovative post‐secondary transition program of a major Canadian, non‐profit, multi‐disciplinary ASP, which aimed to equip Autistic adults with intellectual disabilities with knowledge and skills to live and thrive in the community. Two of the program's expected outcomes were increased self‐determination and self‐advocacy (https://centreforautismab.ca/).

The ASP program ran out of three apartments in a walkable community with access to public transportation within a large city. It operated from Monday to Friday for 6 h per day, during which Autistic adults participated in various work and leisure activities, including learning modules such as time management and applying for jobs; volunteering at a food bank and a meal delivery service for seniors; paid employment through building maintenance; and leisure activities such as the gym, swimming, and community walks.

At the time of data collection, the program had 19 participants (20–27 years; 17 identified as men and 2 identified as women) who all had diagnoses of autism and intellectual disability. To support individualised skill development, the program maintained a high staff‐to‐participant ratio of approximately 1:2.

2.4. Recruitment

Due to JR's relationship with the ASP, a manager distributed and collected the study information letter and consent forms. The manager did not have a vested interest in whether the staff participated and made it clear to all staff that participation was optional and would not affect their employment.

2.5. Research Participants

Participants included six of eight front‐line staff, the two supervisors and the program director for a total of 82% staff. Demographic information for each staff participant (hereafter called ‘staff’ or ‘staff member’) is in Table 1.

TABLE 1.

Demographics.

Demographics Mean or (n) Range
Age (years) 30 24–43
Identified gender (n)
Woman 8
Man 1
Educational attainment (n)
High school 2
College diploma 1
Undergraduate degree 4
Graduate degree 2
Years with Service Provider 2.67 1–6
Years in disability services 7.78 2–15
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2.6. Data Collection

An external facilitator who was not part of the ASP or the research team collected all data to eliminate any perceived power imbalance due to the role of JR in the organisation. This facilitator was experienced and skilled in running focus groups, conducting in‐depth qualitative interviews, and was familiar with the disability service sector.

We chose a focus group for the six front line staff because the interaction among participants often promotes richer and fuller data toward a common goal than individual interviews due to the interactive discussion and ‘piggybacking’ on others' ideas (Thorne 2016). Thorne (2016) recommends that focus groups not exceed six to eight participants. We conducted semi‐structured interviews with the two supervisors together and the programme director alone to avoid potential power imbalances, which could lead some participants to constrain what they say (Thorne 2016; Morgan 2019). The focus group and interviews were guided by the questions in Appendix A. The guiding questions were initially developed by JR, and then reviewed, edited, and finalised with STH and the ACP. We used Zoom, an online meeting platform, for the focus groups and interviews due to COVID‐19 restrictions. Each participant was on a separate computer to allow for equal access. The focus group was approximately 90 min, and was recorded, transcribed, and anonymised before being sent to JR for analysis. For the focus group and the interviews, participants had the questions in advance and the facilitator asked additional probing questions to expand on answers.

The remaining three staff were interviewed by the same external facilitator in a group interview with two staff (supervisors; approximately 70 min) and a single interview with the other staff member (program director; approximately 60 min). The interviews were divided into these groups to avoid potential power imbalances and help participants feel comfortable to provide honest and potentially vulnerable information (Morgan 2019). The transcripts from the group and single interviews were merged to decrease potential identification based on participant responses, anonymised, and sent to JR.

Additionally, ACP meetings took place monthly where we discussed and determined the research questions, data collection methods, data analysis and interpretation, and dissemination strategies. Analyses were also informed by recordings of these meetings, as well as JR's reflexive journal.

2.7. Data Analysis

Braun and Clarke's (2021) reflexive thematic analysis framework guided our analysis. Further, data were interpreted using the lenses of the neurodiversity paradigm (Walker 2014) and critical autism studies (Orsini and Davidson 2013). Initially, JR, her supervisor (STH) and two ACP members (AB, AK) reviewed both transcripts, highlighting and reflecting on notable data. The ACP members' reflections were crucial for JR to acknowledge any biases related to her and her son's involvement in the programme. Next, JR engaged in an iterative process of reading and re‐reading the transcripts, organising significant excerpts into codes and categories, and proposing candidate themes (Braun and Clarke 2021). Drafts of coding, categorisation and theme generation, including supporting quotes, were compiled in a mind map and a word document, and reviewed multiple times by four separate groups: (1) the ACP, (2) the research team, (3) programme staff, and (4) programme management. After each review, JR re‐examined the transcripts and incorporated feedback from each group, keeping an audit trail of all versions (See Figure 1). All team members agreed on three themes and 12 subthemes.

FIGURE 1.

FIGURE 1

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Data analysis process. ACP, Autistic Community Partners; LA, Lead Author; RT, Research Team.

The grey bars at the top and bottom of the data analysis process indicate the Braun & Clarke phase.

3. Results

Our first objective was to learn from staff how they supported autonomy for the ASP's Autistic participants with intellectual disabilities. Our second objective was to learn from staff what skills, strategies and/or resources they perceive as necessary to enhance the participants' autonomy. We identified three themes related to these objectives: (1) importance of relationships (primarily relates to our first objective), (2) importance of environment, and (3) important skills. The second and third themes primarily relate to our second objective. Within each theme, we identified four subthemes (see Figure 2).

FIGURE 2.

FIGURE 2

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Themes and Subthemes.

3.1. Theme 1: Importance of Relationships

Staff identified that strong relationships between them and Autistic participants were crucial to support participants' autonomy.

3.1.1. Subtheme 1.1. Staff Know the Participants

Staff know the participants underscores staff appreciation for the individuality of each program participant and reflects their belief in the importance of developing a deep understanding of each participant. Staff emphasised that it takes time to get to know each participant.

And sometimes the people I've worked with for a long time, I feel like I could read their minds. So, I think we just have that really strong desire to get to know the people that we're supporting…

Staff felt that having the time to get to know each participant well was crucial so autonomy support could be provided in a meaningful way, even though they felt overburdened with their workloads. One staff member commented, ‘We're always stretched thin, and our staff often doesn't receive the training we believe is necessary’, yet they still prioritised developing and maintaining relationships with participants. Unfortunately, low wages in the publicly funded disability services field means that high staff turnover impacted the program participants, as reflected in this comment, ‘We're all here because we genuinely care, but that doesn't pay our mortgages, so it can be challenging’. The integration of new staff into the program required a dedicated period for them to establish relationships and familiarise themselves with the participants. This transitional phase was thought to temporarily limit opportunities for autonomous choice‐making among program participants as noted by one staff ‘if we're in crisis management mode, and we're just trying to get through the day with everyone in one piece, we are not focused on empowerment, we are focused on safety’.

3.1.2. Subtheme 1.2. Staff Care About Participants

Staff care about participants describes the importance of staff being open, responsive, empathetic and non‐judgmental to support the autonomy of program participants. Staff also brought a sense of warmth, respect and high regard for each participant. Staff at all levels articulated this factor. For example, a front‐line staff commented, ‘I think that's kind of at the heart of what makes this program successful ‐ having staff that care’, and a supervisor said,

All of them (staff) really care about the participants and they don't necessarily only care in the way that ‘this is my job’… They care about that these people's lives are awesome, and they're having a great day and are furthering their goals.

Indeed, when asked about their own experience of autonomy and choice‐making and its influence on their well‐being, a staff member revealed that the pandemic‐induced limitations on their social life heightened their empathy for program participants who may always have fewer chances for autonomy and choice‐making than they do. Throughout the interviews, staff expressed their desire to improve Autistic adults' lives and prioritise Autistic perspectives to know what participants really want in their lives, including perspectives of minimally‐ or non‐speaking Autistic people. For example, a front‐line staff member commented that it is about,

genuinely understanding who the people around us are and the things that they hold dear so that we can facilitate that process in a way that honours who they are, and it's not an extension of us or an extension of … their parents or the program. It's really who they are and what they want.

3.1.3. Subtheme 1.3. Staff Tailor Choice‐Making

Staff tailor choice‐making refers to the use and perceived benefits of individualised support for making choices. Staff indicated that they use the four essentials of Person‐Centred Active Support: (1) little and often, (2) maximising choice and control, (3) graded assistance, and (4) every moment has potential (Mansell and Beadle‐Brown 2012) as a structure to support each program participant by maximising their autonomy opportunities. One staff member's comment exemplified the use of all four essentials,

[by] giving as much information as possible and giving it in a way that can help them (program participants) understand the concept of each choice [graded assistance]. … [We're] practising making choices all the time [little and often]. Even with little things like having water or soda [every moment has potential], or we are going to work on this huge goal or this huge goal [maximizing choice and control]. And then you frame it in different ways [graded assistance], and that also comes from us knowing the participants too.

3.1.4. Subtheme 1.4. Staff Feel Supported by the Organisation

Staff feel supported by the organisation refers to the culture of the ASP, which enabled them to try new things, make mistakes and learn from them. Staff felt encouraged ‘to dive into that interest [of the program participant] and to follow that desire’, even if it was something they had not tried before. This encouragement was also reflected by a supervisor,

The team, they don't meet each other with judgement. They share their successes; they share their mistakes as staff, and the environment is so supportive and learning‐based that nobody's worried about saying ‘I messed this up big time’. And everybody is so supportive, and they just do something different next time. And that attitude seeps into the participants too.

This culture of acceptance freed staff to find new ways to support participants' autonomy and help participants to explore their interests.

3.2. Theme 2: Importance of Environment

Staff identified that an emotionally safe, comfortable environment was important for participants' autonomy.

3.2.1. Subtheme 2.1. Staff Need More Training

Staff need more training, refers for their need for more consistent initial training and ongoing training in co‐occurring conditions, conflict resolution, and mental health first aid. Staff mentioned that ‘Half the time our staff doesn't even get trained the way we would like them to be, because [team lead] gets pulled in a thousand different directions or [program manager] is running five different programs at once’. One staff member identified that ‘I kind of had to learn a lot of this on the fly and it was really hard to learn all of that on the fly’. Staff also identified an unmet need for ongoing professional development (PD),

So I feel like that lack of funding really translates into lack of resources for PD, which if we were all trained in Mental Health First Aid, and, … given the opportunity to learn about what to do when someone discloses abuse or talks about suicidality …like obviously it's not realistic to expect everyone in this program to be trained as psychologists and able to support people in their mental health … but even within the context of our day to day, that stuff comes up all the time.

3.2.2. Subtheme 2.2. Parents/Guardians May Need Support as They Foster Autonomy

Parents/guardians may need support as they foster autonomy, reflects how staff felt that direct, open conversations with participants' families/guardians about their young adult's need to progress toward typical adult responsibilities and experiences within the safe environment of the ASP's program supported the generalisation of autonomy beyond the ASP program. Staff strived to create a safe space for program participants to learn and test their autonomy. One staff member commented, ‘you [program participant] make a radical decision and it blows up in your face, we're still going to be there to make sure you're okay and you're safe’.

The importance of communication with parents/guardians was particularly notable related to topics that they felt the program participants needed and wanted, but that parents/guardians had previously discouraged or prohibited, such as sexuality. As a staff member commented, ‘so many of our families grew up with their adult in that [protective] paradigm that they really, really struggle to let go of that control’. Staff also emphasised that the autonomy of parents/guardians was often prioritised over the autonomy of the program participant, especially when the desires of parents/guardians conflicted with the program participants. One staff remarked, ‘It can be as simple as … a movie choice where they wanna pick an action movie that's PG 13 and a parent might want them to see a G‐rated animated movie’. Staff also highlighted the importance of having frank discussions with parents/guardians about what is important to the participant. As one staff put it,

I think so many of our families, their hearts are in the best possible place. They love their adults so profoundly and they just want the best for them. But realistically, perception of best practice and what best looks like has changed. It's really, really hard to overcome a lifetime of understanding in a really small amount of contact that we have with families.

3.2.3. Subtheme 2.3. Reduced Stigma and Ableism in the Community

Reduced stigma and ableism in the community refers to the need for understanding and acceptance from the community to better support program participants' autonomy. Staff spoke about stigma and ableism faced when doing activities in the community. One staff member remarked, ‘there's definitely widespread community ignorance’ that leads to ‘people not knowing how to respond to us or participants or, you know, behaviours that might be exhibited’.

In another example during a trip to a coffee shop, ‘we're at [coffee shop] waiting to order drinks and there's a line of 25 people … and people are starting to get mad that we're taking too long…’. The staff member then described her struggle to support the program participants' opportunity to make an autonomous decision (i.e., what drink to order), ‘we all work really hard at finding that balance where, you know, we're not antagonizing community members and kind of facilitating a negative perception of the people we're supporting’. Staff's anxiety about receiving social censure from the community interfered with their ability to advocate for program participants to have enough time to complete transactions independently, interfering with their autonomy.

3.2.4. Subtheme 2.4. Increased Funding

Increased funding refers to both the need for liveable wages and to be paid for adequate time to build relationships to effectively support the program participants. Low wages impacted the ASP's ability to hire and retain staff. Staff remarked that ‘we have the minimum amount of staff that we need to keep [program] running. So, if one of us gets sick, one of us can't show up or goes on vacation, then we're left stressed out and that can also affect the way we support our participants, greatly’. Staff also discussed the low wages, ‘We are at the mercy of a lot of factors and the number of times I've been told ‘I wish we could pay you more’ is outrageous … but that doesn't pay our mortgages’.

3.3. Theme 3: Important Skills

This theme summarises the skills that staff think would support program participants to be more autonomous. We identified four subthemes: self‐advocacy, interoceptive awareness, working effectively with others and identifying pros and cons of choices.

3.3.1. Subtheme 3.1. Self‐Advocacy Skills

Many of the program participants primarily communicated through gestures and actions, which were not always understood by others, especially those who did not know the participants well. Staff wanted the program participants to have their perspectives known, as reflected in this comment from a front‐line staff,

I think that there has been a very clear discrepancy in terms of representing individuals who are less able to advocate for themselves, right. So, like people who don't necessarily communicate verbally or have trouble with expressive language or, you know, are under the care of a guardian or, you know, work with aides. So, I feel like I was really intrigued by the potential to kind of help those people express themselves a little bit more.

All staff felt that it was important to support participants in developing abilities to effectively make their preferences, needs and choices known to others. For example, one staff member stated, ‘self‐advocacy [is] something that we're always working on, right? The ability to say, “I want” or “I need”, or “yes” and “no” to things is so, so important’. Even though this staff member used the words ‘ability to say’, they recognised that one's desire might be communicated in a variety of ways but reinforced that an important part of their job was to support each program participant to learn a way that could be understandable to others.

3.3.2. Subtheme 3.2. Interoceptive Awareness

Interoceptive awareness refers to the ability to identify internal feelings within one's body such as hunger, the need to urinate, and feelings such as anger, embarrassment and fear (DuBois et al. 2016). A staff commented that, ‘it's really hard to know what you want and advocate for yourself if you don't know what you need…what you're feeling’. For example, staff stated that learning to understand feelings could support autonomy because participants would then ‘understand what kind of choices they can make based on [the feeling]’. Increasing interoceptive awareness for program participants was perceived to benefit their self‐advocacy by helping them to recognise their internal needs.

3.3.3. Subtheme 3.3. Working Effectively With Others

Working effectively with others reflects that participants need skills for successful group participation, which was how the program was structured. For example, one staff member commented, ‘[it] is like a democracy. We have to respect everybody's choice, but it's also a group so we have to kind of also get a democratic vote quite often, to lead to some kind of choice’. Inherently, participants needed to recognise that working with others meant that they needed to compromise at times because it was not possible for everyone to always get their choice. Staff felt that the group context was,

super applicable to society and existing around other people and… how to consider your actions in relation to others…that's really crucial to understanding realistic decision‐making and realistic autonomy within the context of living in the world.

The group structure of the program also supported working effectively with others through peer‐to‐peer support as evidenced by this comment, ‘we have a few participants who are starting to support their peers quite a bit more, they are thinking about them, they are including them, they are bringing them into conversations’.

3.3.4. Subtheme 3.4. Pros and Cons of Choices

Pros and cons of choices refers to the need for participants to understand the impact of their choices to help them make informed choices. One staff member said, ‘There are a lot of factors that go into making a choice and I feel like we make a really concerted effort to explore those factors and why they matter or if they matter’. Another staff member suggested they help program participants by asking ‘what happens when you make those decisions? How does it affect the people around you?’ Staff said that they also worked on understanding how a choice may impact how the participant feels, ‘if you don't sleep at night, you're gonna be tired all day and you have to deal with that’. They felt that this knowledge could help program participants make choices that are aligned with their values, goals and desires, which fosters self‐determination.

4. Discussion

Many services for Autistic people do not support self‐determination (Hodgetts et al. 2018; Webster et al. 2022). This research aimed to learn from the staff of a unique post‐secondary transition programme about how they support autonomy for its Autistic participants with intellectual disability, as well as their insights regarding the specific skills that they felt would support programme participants to enhance their autonomy and ultimately, their self‐determination. Staff spend a significant amount of time with participants and can create (or not) autonomy‐supportive environments. While their perceptions may differ from parent and/or programme participant perceptions (see Ryan et al. 2024), garnering their perspectives is one key component in enhancing supports and services to promote participants' self‐determination.

Although we had conceptualised this study with a focus on autonomy, our findings relate to all three basic psychological needs that Ryan and Deci (2017) propose are necessary for self‐determination. Skill development, as suggested by staff, would promote the need for competency. Developing the skills identified by staff may support both the Autistic adult's ability to make their choices known and staff's confidence that they are accurately interpreting the Autistic adult's desire. We identified the importance of taking the time and effort to develop meaningful relationships with program participants as a core part of current practices of the ASP's program staff, which is aligned with SDT's basic psychological need for relatedness (Ryan and Deci 2017). Staff acknowledged that knowing and caring about the program participants enabled them to personalise their support for enhancing participants' autonomy, and that feeling supported by the organisation enhanced their willingness and capacity to develop relationships with program participants.

However, it takes time to build relationships, and staff turnover interferes with the establishment of relationships. Murray et al. (2022) found that pay was ranked second highest in the factors that influenced job retention for staff working with people with intellectual disabilities. Low wages are known to be problematic in the disability service sector and contribute to high turnover across multiple countries (e.g., Breen et al. 2022; Macdonald et al. 2018; Stevens et al. 2021). However, Murray et al.'s (2022) finding that relationships were deemed even more important than pay reinforces the importance of organisational support for relationship building and suggests that, even though this time may seem inefficient, it may be cost‐effective due to increased staff retention.

Tailoring choice‐making to program participants' needs and abilities was perceived to enhance both opportunity and capacity for self‐determination. This individualisation contributes to maximising choice and control, one of four essentials of Person‐Centred Active Support known to increase program participants' levels of engagement and autonomy (Felce et al. 2000; Stancliffe et al. 2007). Individualising choice‐making for each participant assists staff in honouring program participants' choices, and a history of having one's choices respected is one of four elements of real choice (Murphy et al. 2017). However, staff are not solely responsible for facilitating autonomy and self‐determination.

Parents/guardians, as the primary people in program participants' lives, have considerable influence over opportunities to be self‐determined. In supporting autonomy, it is necessary to strike a balance between what is important to the person being supported and consideration of their health and safety (Sanderson and Lewis 2012). However, parents/guardians have traditionally prioritised safety over autonomy, though more recently, parents/guardians have demonstrated greater appreciation for the value of autonomy (Dean et al. 2021). Open dialogue between staff and parents/guardians about autonomy and self‐determination can facilitate positive parental attitudes toward self‐determination (Martínez‐Tur et al. 2018). Providing direct training in autonomy‐support, supported decision‐making and human rights to parents could lead to more autonomy for program participants, enhancing their overall well‐being (Douglas and Bigby 2020).

Staff identified a need for Mental Health First Aid training, so they are equipped when a participant discloses abuse or suicidal ideation. Suicidality is known to be higher in Autistic adults (e.g., Cassidy and Rodgers 2017; Croen et al. 2015). Further, Kildahl and Helverschou (2023) found potential underdiagnoses of post‐traumatic stress disorder in Autistic people with intellectual disabilities compared with known experiences of violence and sexual abuse. They also found that violence and sexual abuse were associated with ‘challenging’ behaviours (Kildahl and Helverschou 2023). Together, this suggests that at minimum, staff should be trained in trauma‐informed care.

While we were not specifically studying stigma and ableism, staff identified stigma and ableism as a barrier to autonomy, particularly when in the community. The dominant deficit‐based narrative of autism contributes to the stigma and ableism that Autistic people and their support staff or parents/guardians experience (Huang et al. 2023; Rupchand and Kormann 2024). Slowly, the neurodiversity movement is influencing a more positive narrative of autism (den Houting 2019; Raymaker and Nicolaidis 2013). Researchers have found that autism training has had some success with mitigating explicit bias but little success with implicit bias (Jones et al. 2021). Nevertheless, autism training could help reduce stigma in the community.

The capacity to be self‐determined may require support (Cheak‐Zamora et al. 2020). Staff identified four areas for programme participant skill development that could increase their capacity: self‐advocacy skills, interoceptive awareness, working effectively with others, and pros and cons of choices. Unfortunately, these areas of skill development are often neglected in adult support programming (Bigby and Beadle‐Brown 2018; Stefánsdóttir et al. 2018). Adult support programming tends to be more focused on generic training, such as social skills or job interview skills, instead of individualised skill development (Lorenc et al. 2018). Together, increased skills and awareness in the areas identified by the staff in this study are likely to have a positive impact on self‐determination. Programme participants are more likely to authentically self‐advocate when they understand their needs and desires, including internal needs recognised through interoceptive awareness (Mahler et al. 2022; Schena et al. 2022).

4.1. Implications for Practice and Service Delivery

Although this study was situated within one service provider, many of our learnings may be generalisable to other service providers who want to support autonomy for Autistic people with intellectual disabilities. Service providers can support autonomy by adopting frameworks such as Person‐Centred Active Support to ensure that programme participants have opportunities to make choices and be engaged in meaningful activities and relationships (Murphy et al. 2017). They can also educate themselves on interoception, recognised to influence behaviour and cognition for Autistic people (DuBois et al. 2016), and incorporate activities to increase interoceptive awareness into programming (Mahler 2017). Curricula such as the Self‐Determined Learning Model of Instruction (SDLMI; Shogren et al. 2012, 2017), can be utilised to teach self‐advocacy and assist participants to set their own goals. Kuld et al. (2023) meta‐analysis highlighted numerous strategies that are accessible to service providers to support the components of self‐determination.

Service providers can provide training on supporting self‐determination to parents/guardians of programme participants. One evidence‐based approach is the La Trobe Support for Decision‐making Practice Framework (Douglas and Bigby 2020). The efficacy of this approach was demonstrated in a recent study with parents/guardians of adults with intellectual disabilities (Bigby et al. 2022). This could be a parallel training for parents/guardians while teaching self‐advocacy skills to programme participants.

System advocacy is required to address the issue of low pay in this sector. Service providers may be able to facilitate the engagement of a variety of groups and organisations to advocate for increased funding. Resolving the issue of pay is critical to the retention of staff and thus to the quality of life for programme participants.

Autistic people are often stigmatised, which harms their wellbeing (den Houting et al. 2021). People who do not have an Autistic family member or close friend often have only stereotyped knowledge of autism, including attributes such as difficult personalities or behaviour, poor social skills, being weird and awkward, low intelligence, and being withdrawn (Treweek et al. 2018). This shortfall in autism knowledge contributes to the stigma experienced by Autistic people, resulting in poor mental health (den Houting et al. 2021). Service providers could provide autism training to the community as one method to help reduce stigma and ableism (Gillespie‐Lynch et al. 2015; Jones et al. 2021; Waisman et al. 2023).

4.2. Limitations and Directions for Future Research

One limitation of this study is that we only recruited staff from one service provider. Interviewing staff from other service providers may have had different results, especially because the program in which these staff work is designed as an autonomy‐supportive environment. However, we believe that our findings can generalise to other organisations by suggesting strategies that programs that are not yet autonomy‐supportive can use or validating approaches that autonomy‐supportive programs are using. Additionally, due to JR's relationship with the ASP and promised anonymity to staff participants (as per our ethics approval), we are unable to attribute comments to specific staff, even by using pseudonyms. Another limitation is that all data are based on staff reports and perceptions, with no direct observation of the program in action or input from parents/guardians, although participant perspectives were reported elsewhere (Ryan et al. 2024). Future research could also include direct observation within the program environment to provide context for staff perceptions by observing staff and program participants as they engage in daily activities. Future research could include interviews with parents/guardians about supporting autonomy. Our findings reinforce the importance of wrap‐around approaches in which programs and parents/guardians encourage autonomy. Indeed, parents can encourage autonomy via choice‐making with young children (Palmer et al. 2017) and schools could include students in their individual education plan meetings (Webster et al. 2022). However, there is a gap in research on how best to support parents/guardians to enhance autonomy. Future research could explore the efficacy of implementing both the La Trobe Support for Decision‐making Practice Framework for parents/guardians along with the SDLMI for Autistic adults with intellectual disabilities.

5. Conclusion

This study revealed key elements for autonomy and autonomy support for Autistic adults with intellectual disabilities from the perspectives of staff at a post‐secondary transition programme. Relationships were identified as critical, and an emotionally safe, comfortable environment was important for enhanced autonomy. Finally, staff identified several skill areas that would benefit programme participants to enhance their autonomy. This is all crucial information for supporting self‐determination for Autistic adults with intellectual disabilities. It also points to the need for more of this type of research, across geographic and cultural borders, with an Autistic‐centred and inclusive perspective on quality‐of‐life issues for this population.

Author Contributions

J.R. contributed to all aspects of the study, including conception, design, data analysis, interpretation, and drafting of the manuscript. S.T.H. contributed to conception, design, analysis, interpretation, and critical review of the manuscript. H.B., C.D., A.L., A.B., and A.K. contributed to design, analysis, interpretation, and critical review of the manuscript. D.N. contributed to design and critical review of the manuscript. All authors approved the submitted manuscript and agreed to be accountable for this work.

Disclosure

At the time of data collection and analysis, J.R. was an employee of the autism service provider. Detailed information on how we navigated this is within the article. H.B. is a volunteer board member for the autism service provider with no involvement in day‐to‐day operations. The remaining authors have no competing interests to declare.

Ethics Statement

The University of Alberta's Research Ethics Board approved this study (Pro00103146).

Acknowledgements

We thank Rebecca Rubuliak for facilitating the focus groups and interviews, and transcribing the focus group transcript. We also thank Adrian Xavier for transcribing and merging the interview transcripts. Thank you to our participants for their time in contributing to this work.

Appendix A.

Guiding Questions for Focus Group (Staff)

This first group of questions can be applied to any context in your life:

  1. Tell me about why you decided to participate in this study.
    1. How did you make that choice?
    2. Was anyone else involved in that decision?
  2. What kind of choices are important to you?
    1. Tell me more about these choices.
    2. Why are these important choices?
    3. Tell me about how making these choices influence your wellbeing.
  3. Tell me about times when having a choice is not important to you.
    1. What are some examples of choices that are not important to you?

The context for this second group of questions is the ASP program:

  • 4

    How do you currently help program participants to be autonomous and make their own choices?

  • 5

    What are the current facilitators to supporting autonomy and choice in the program?

  • 6

    What are the current barriers to supporting autonomy and choice in the program?

  • 7

    What are some specific strategies that would help enable autonomy and choice for program participants?

  • 8

    How do you think we could implement strategies for autonomy support?

  • 9

    What resources might be needed?

  • 10

    What skills do you need?

  • 11

    What skills do you think program participants need?

Ryan, J. , Brown H. M., Borden A., et al. 2025. “‘It's Really Who They Are and What They Want’: Staff Perspectives on Supporting Autonomy for Autistic Adults With Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 38, no. 4: e70106. 10.1111/jar.70106.

Funding: This study was funded by a grant from the Social Sciences and Humanities Research Council (890‐2020‐12) and a grant from Autism Edmonton and the Autism Research Centre.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

References

  1. Bigby, C. , and Beadle‐Brown J.. 2018. “Improving Quality of Life Outcomes in Supported Accommodation for People With Intellectual Disability: What Makes a Difference?” Journal of Applied Research in Intellectual Disabilities 31, no. 2: e182–e200. 10.1111/jar.12291. [DOI] [PubMed] [Google Scholar]
  2. Bigby, C. , Douglas J., Smith E., Carney T., Then S.‐N., and Wiesel I.. 2022. “‘I Used to Call Him a Non‐Decision‐Maker – I Never Do That Anymore’: Parental Reflections About Training to Support Decision‐Making of Their Adult Offspring With Intellectual Disabilities.” Disability and Rehabilitation 44, no. 21: 6356–6364. 10.1080/09638288.2021.1964623. [DOI] [PubMed] [Google Scholar]
  3. Braun, V. , and Clarke V.. 2021. “One Size Fits All? What Counts as Quality Practice in (Reflexive) Thematic Analysis?” Qualitative Research in Psychology 18, no. 3: 328–352. 10.1080/14780887.2020.1769238. [DOI] [Google Scholar]
  4. Breen, R. , Savundranayagam M. Y., Orange J. B., and Kothari A.. 2022. “Quality Home Care for Persons Living With Dementia: Personal Support Workers' Perspectives in Ontario, Canada.” Health & Social Care in the Community 30, no. 5: e2497–e2506. 10.1111/hsc.13692. [DOI] [PubMed] [Google Scholar]
  5. Cassidy, S. , and Rodgers J.. 2017. “Understanding and Prevention of Suicide in Autism.” Lancet Psychiatry 4, no. 6: e11. 10.1016/S2215-0366(17)30162-1. [DOI] [PubMed] [Google Scholar]
  6. Cheak‐Zamora, N. C. , Maurer‐Batjer A., Malow B. A., and Coleman A.. 2020. “Self‐Determination in Young Adults With Autism Spectrum Disorder.” Autism 24, no. 3: 605–616. 10.1177/1362361319877329. [DOI] [PubMed] [Google Scholar]
  7. Chou, Y.‐C. , Wehmeyer M. L., Palmer S. B., and Lee J.. 2016. “Comparisons of Self‐Determination Among Students With Autism, Intellectual Disability, and Learning Disabilities: A Multivariate Analysis.” Focus on Autism and Other Developmental Disabilities 32: 1088357615625059. 10.1177/1088357615625059. [DOI] [Google Scholar]
  8. Croen, L. A. , Zerbo O., Qian Y., et al. 2015. “The Health Status of Adults on the Autism Spectrum.” Autism 19, no. 7: 814–823. 10.1177/1362361315577517. [DOI] [PubMed] [Google Scholar]
  9. Dean, E. E. , Kirby A. V., Hagiwara M., Shogren K. A., Ersan D. T., and Brown S.. 2021. “Family Role in the Development of Self‐Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review.” Intellectual and Developmental Disabilities 59, no. 4: 315–334. 10.1352/1934-9556-59.4.315. [DOI] [PubMed] [Google Scholar]
  10. Deci, E. L. , and Ryan R. M.. 2013. “The Importance of Autonomy for Development and Well‐Being.” In Self‐Regulation and Autonomy, edited by Sokol B. W., Grouzet F. M. E., and Müller U., 19–46. Cambridge University Press. [Google Scholar]
  11. den Houting, J. 2019. “Neurodiversity: An Insider's Perspective.” Autism 23, no. 2: 271–273. 10.1177/1362361318820762. [DOI] [PubMed] [Google Scholar]
  12. den Houting, J. , Botha M., Cage E., Jones D., and Kim S.. 2021. “Shifting Stigma About Autistic Young People.” Lancet Child & Adolescent Health 5, no. 12: 839–841. 10.1016/S2352-4642(21)00309-6. [DOI] [PubMed] [Google Scholar]
  13. Douglas, J. , and Bigby C.. 2020. “Development of an Evidence‐Based Practice Framework to Guide Decision Making Support for People With Cognitive Impairment due to Acquired Brain Injury or Intellectual Disability.” Disability and Rehabilitation 42, no. 3: 434–441. 10.1080/09638288.2018.1498546. [DOI] [PubMed] [Google Scholar]
  14. DuBois, D. , Ameis S. H., Lai M.‐C., Casanova M. F., and Desarkar P.. 2016. “Interoception in Autism Spectrum Disorder: A Review.” International Journal of Developmental Neuroscience 52, no. 1: 104–111. 10.1016/j.ijdevneu.2016.05.001. [DOI] [PubMed] [Google Scholar]
  15. Emond Pelletier, J. , and Joussemet M.. 2017. “The Benefits of Supporting the Autonomy of Individuals With Mild Intellectual Disabilities: An Experimental Study.” Journal of Applied Research in Intellectual Disabilities 30, no. 5: 830–846. 10.1111/jar.12274. [DOI] [PubMed] [Google Scholar]
  16. Felce, D. , Bowley C., Baxter H., Jones E., Lowe K., and Emerson E.. 2000. “The Effectiveness of Staff Support: Evaluating Active Support Training Using a Conditional Probability Approach.” Research in Developmental Disabilities 21, no. 4: 243–255. 10.1016/S0891-4222(00)00040-8. [DOI] [PubMed] [Google Scholar]
  17. Fletcher‐Watson, S. , Adams J., Brook K., et al. 2018. “Making the Future Together: Shaping Autism Research Through Meaningful Participation.” Autism 23: 1362361318786721. 10.1177/1362361318786721. [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Frielink, N. , Schuengel C., and Embregts P. J. C. M.. 2018. “Autonomy Support in People With Mild‐To‐Borderline Intellectual Disability: Testing the Health Care Climate Questionnaire‐Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities 31, no. 1: 159–163. 10.1111/jar.12371. [DOI] [PubMed] [Google Scholar]
  19. Gillespie‐Lynch, K. , Brooks P. J., Someki F., et al. 2015. “Changing College Students' Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma.” Journal of Autism and Developmental Disorders 45, no. 8: 2553–2566. 10.1007/s10803-015-2422-9. [DOI] [PubMed] [Google Scholar]
  20. Hodgetts, S. , Richards K., and Park E.. 2018. “Preparing for the Future: Multi‐Stakeholder Perspectives on Autonomous Goal Setting for Adolescents With Autism Spectrum Disorders.” Disability and Rehabilitation 40, no. 20: 2372–2379. 10.1080/09638288.2017.1334836. [DOI] [PubMed] [Google Scholar]
  21. Huang, Y. , Trollor J. N., Foley K.‐R., and Arnold S. R. C.. 2023. “‘I've Spent My Whole Life Striving to be Normal’: Internalized Stigma and Perceived Impact of Diagnosis in Autistic Adults.” Autism in Adulthood 5: 423–436. 10.1089/aut.2022.0066. [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. Israel, B. , Schulz A., Parker E., and Becker A.. 2001. “Community‐Based Participatory Research: Policy Recommendations for Promoting a Partnership Approach in Health Research.” Education for Health: Change in Learning & Practice (Taylor & Francis Ltd) 14, no. 2: 182–197. [DOI] [PubMed] [Google Scholar]
  23. Israel, B. A. , Chris M. C., Rebecca R. C., et al. 2010. “Community‐Based Participatory Research: A Capacity‐Building Approach for Policy Advocacy Aimed at Eliminating Health Disparities.” American Journal of Public Health 11: 2094. 10.2105/AJPH.2009.170506. [DOI] [PMC free article] [PubMed] [Google Scholar]
  24. Jones, D. R. , DeBrabander K. M., and Sasson N. J.. 2021. “Effects of Autism Acceptance Training on Explicit and Implicit Biases Toward Autism.” Autism 25: 1362361320984896. 10.1177/1362361320984896. [DOI] [PubMed] [Google Scholar]
  25. Kildahl, A. N. , and Helverschou S. B.. 2023. “Post‐Traumatic Stress Disorder and Experiences Involving Violence or Sexual Abuse in a Clinical Sample of Autistic Adults With Intellectual Disabilities: Prevalence and Clinical Correlates.” Autism 28: 13623613231190948. 10.1177/13623613231190948. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. Kuld, P. B. , Frielink N., Zijlmans M., Schuengel C., and Embregts P. J. C. M.. 2023. “Promoting Self‐Determination of Persons With Severe or Profound Intellectual Disabilities: A Systematic Review and Meta‐Analysis.” Journal of Intellectual Disability Research 67, no. 7: 589–629. 10.1111/jir.13036. [DOI] [PubMed] [Google Scholar]
  27. Lorenc, T. , Rodgers M., Marshall D., et al. 2018. “Support for Adults With Autism Spectrum Disorder Without Intellectual Impairment: Systematic Review.” Autism 22, no. 6: 654–668. 10.1177/1362361317698939. [DOI] [PubMed] [Google Scholar]
  28. Macdonald, F. , Bentham E., and Malone J.. 2018. “Wage Theft, Underpayment and Unpaid Work in Marketised Social Care.” Economic and Labour Relations Review 29, no. 1: 80–96. 10.1177/1035304618758252. [DOI] [Google Scholar]
  29. Mahler, K. 2017. Interoception: The Eighth Sensory System. AAPC Publishing. [Google Scholar]
  30. Mahler, K. , Hample K., Jones C., Sensenig J., Thomasco P., and Hilton C.. 2022. “Impact of an Interoception‐Based Program on Emotion Regulation in Autistic Children.” Occupational Therapy International 2022, no. 1: 1–7. 10.1155/2022/9328967. [DOI] [PMC free article] [PubMed] [Google Scholar]
  31. Mansell, J. , and Beadle‐Brown J.. 2012. Active Support: Enabling and Empowering People With Intellectual Disabilities. Illustrated ed. Jessica Kingsley Publishers. [Google Scholar]
  32. Martínez‐Tur, V. , Estreder Y., Moliner C., Gracia E., Pătraș L., and Zornoza A.. 2018. “Dialogue Between Workers and Family Members Is Related to Their Attitudes Towards Self‐Determination of Individuals With Intellectual Disability.” Journal of Intellectual & Developmental Disability 43, no. 3: 370–379. 10.3109/13668250.2017.1416256. [DOI] [Google Scholar]
  33. Morgan, D. L. 2019. Sage Research Methods—Basic and Advanced Focus Groups. SAGE Publications Inc. [Google Scholar]
  34. Murphy, B. , Bradshaw J., and Beadle‐Brown J.. 2017. Person‐Centred Active Support Training Pack. 2nd ed. Pavilion Publishing and Media Ltd. https://pavpub.com/learning‐disability/person‐centered‐practice/person‐centred‐active‐support‐training‐pack‐2nd‐edition. [Google Scholar]
  35. Murray, G. C. , McKenzie K., Metcalfe D., Whelan K., and Murray A. L.. 2022. “Exploring the Relative Importance of Factors That Influence the Job Retention of Social Care Staff Working in Intellectual Disability Services.” British Journal of Learning Disabilities 50, no. 1: 13–18. 10.1111/bld.12365. [DOI] [Google Scholar]
  36. Nicolaidis, C. , Raymaker D., Kapp S. K., et al. 2019. “The AASPIRE Practice‐Based Guidelines for the Inclusion of Autistic Adults in Research as Co‐Researchers and Study Participants.” Autism 23: 136236131983052. 10.1177/1362361319830523. [DOI] [PMC free article] [PubMed] [Google Scholar]
  37. Nicolaidis, C. , Raymaker D., McDonald K., et al. 2011. “Collaboration Strategies in Nontraditional Community‐Based Participatory Research Partnerships: Lessons From an Academic−Community Partnership With Autistic Self‐Advocates.” Progress in Community Health Partnerships: Research, Education, and Action 5, no. 2: 143–150. [DOI] [PMC free article] [PubMed] [Google Scholar]
  38. Orsini, M. , and Davidson J.. 2013. “Introduction.: Critical Autism Studies: Notes on an Emerging Field.” In Worlds of Autism: Across the Spectrum of Neurological Difference, edited by Orsini M. and Davidson J., 1–28. University of Minnesota Press. [Google Scholar]
  39. Palmer, S. B. , Wehmeyer M. L., and Shogren K. A.. 2017. “The Development of Self‐Determination During Childhood.” In Development of Self‐Determination Through the Life‐Course, edited by Wehmeyer M. L., Shogren K. A., Little T. D., and Lopez S. J., 71–88. Springer Netherlands. 10.1007/978-94-024-1042-6_6. [DOI] [Google Scholar]
  40. Raymaker, D. , and Nicolaidis C.. 2013. “Participatory Research With Autistic Communities: Shifting the System.” In Worlds of Autism: Across the Spectrum of Neurological Difference, edited by Davidson J. and Orsini M., 169–188. University of Minnesota Press. [Google Scholar]
  41. Reeve, J. 2006. “Teachers as Facilitators: What Autonomy‐Supportive Teachers Do and Why Their Students Benefit.” Elementary School Journal 106, no. 3: 225–236. 10.1086/501484. [DOI] [Google Scholar]
  42. Rupchand, F. , and Kormann S.. 2024. “Intersubjective Discoveries on Parenting Autistic Sons: Challenges to Ableist, Normative Narratives of Deficit.” Transactional Analysis Journal 54, no. 1: 31–46. 10.1080/03621537.2024.2286580. [DOI] [Google Scholar]
  43. Ryan, J. , Brown H. M., Borden A., et al. 2024. “Being Able to Be Myself: Understanding Autonomy and Autonomy‐Support From the Perspectives of Autistic Adults With Intellectual Disabilities.” Autism 28: 13623613241254432. 10.1177/13623613241254432. [DOI] [PMC free article] [PubMed] [Google Scholar]
  44. Ryan, R. M. , and Deci E. L.. 2006. “Self‐Regulation and the Problem of Human Autonomy: Does Psychology Need Choice, Self‐Determination, and Will?” Journal of Personality 74, no. 6: 1557–1586. 10.1111/j.1467-6494.2006.00420.x. [DOI] [PubMed] [Google Scholar]
  45. Ryan, R. M. , and Deci E. L.. 2017. Self‐Determination Theory: Basic Psychological Needs in Motivation, Development, and Wellness. Guildford Press. [Google Scholar]
  46. Sanderson, H. , and Lewis J.. 2012. A Practical Guide to Delivering Personalisation: Person‐Centred Practice in Health and Social Care. 1st ed. Jessica Kingsley Publishers. [Google Scholar]
  47. Schena, D. , Rosales R., and Rowe E.. 2022. “Teaching Self‐Advocacy Skills: A Review and Call for Research.” Journal of Behavioral Education 32: 641–689. 10.1007/s10864-022-09472-7. [DOI] [Google Scholar]
  48. Shogren, K. , Wehmeyer M. L., Palmer S. B., Forber‐Pratt A. J., Little T. J., and Lopez S.. 2015. “Causal Agency Theory: Reconceptualizing a Functional Model of Self‐Determination.” Education and Training in Autism and Developmental Disabilities 50, no. 3: 251–263 JSTOR. [Google Scholar]
  49. Shogren, K. A. , Palmer S. B., Wehmeyer M. L., Williams‐Diehm K., and Little T. D.. 2012. “Effect of Intervention With the Self‐Determined Learning Model of Instruction on Access and Goal Attainment.” Remedial and Special Education 33, no. 5: 320–330. 10.1177/0741932511410072. [DOI] [PMC free article] [PubMed] [Google Scholar]
  50. Shogren, K. A. , Wehmeyer M. L., and Palmer S. B.. 2017. “Causal Agency Theory.” In Development of Self‐Determination Through the Life‐Course, edited by Wehmeyer M. L., Shogren K. A., Little T. D., and Lopez S. J., 55–67. Springer Netherlands. 10.1007/978-94-024-1042-6_5. [DOI] [Google Scholar]
  51. Stancliffe, R. J. , Harman A. D., Toogood S., and McVilly K. R.. 2007. “Australian Implementation and Evaluation of Active Support.” Journal of Applied Research in Intellectual Disabilities 20, no. 3: 211–227. [Google Scholar]
  52. Stefánsdóttir, G. , Björnsdóttir K., and Stefánsdóttir Á.. 2018. “Autonomy and People With Intellectual Disabilities Who Require More Intensive Support.” Scandinavian Journal of Disability Research 20, no. 1: 1. 10.16993/sjdr.21. [DOI] [Google Scholar]
  53. Stevens, M. , Moriarty J., Manthorpe J., Harris J., Hussein S., and Cornes M.. 2021. “What Encourages Care Workers to Continue Working in Intellectual Disability Services in England? Interview Findings.” Journal of Intellectual Disabilities 25, no. 1: 13–30. [DOI] [PubMed] [Google Scholar]
  54. Thompson‐Hodgetts, S. , Ryan J., Coombs E., et al. 2023. “Toward Understanding and Enhancing Self‐Determination: A Qualitative Exploration With Autistic Adults Without Co‐Occurring Intellectual Disability.” Frontiers in Psychiatry 14: 1250391. 10.3389/fpsyt.2023.1250391. [DOI] [PMC free article] [PubMed] [Google Scholar]
  55. Thorne, S. 2016. Interpretive Description: Qualitative Research for Applied Practice. 2nd ed. Routledge. 10.4324/9781315545196. [DOI] [Google Scholar]
  56. Thorne, S. , Kirkham S. R., and O'Flynn‐Magee K.. 2004. “The Analytic Challenge in Interpretive Description.” International Journal of Qualitative Methods 3, no. 1: 1–11. 10.1177/160940690400300101. [DOI] [Google Scholar]
  57. Treweek, C. , Wood C., Martin J., and Freeth M.. 2018. “Autistic People's Perspectives on Stereotypes: An Interpretative Phenomenological Analysis.” Autism 23: 136236131877828. 10.1177/1362361318778286. [DOI] [PubMed] [Google Scholar]
  58. United Nations . 2006. “Convention on the Rights of Persons With Disabilities, A/RES/61/106.” https://www.un.org/disabilities/documents/convention/convoptprot‐e.pdf. [DOI] [PubMed]
  59. Waisman, T. , Williams Z. J., Cage E., et al. 2023. “Learning From the Experts: Evaluating a Participatory Autism and Universal Design Training for University Educators.” Autism 27, no. 2: 356–370. 10.1177/13623613221097207. [DOI] [PubMed] [Google Scholar]
  60. Walker, N. 2014. “Neurodiversity: Some Basic Terms & Definitions – Neuroqueer.” https://neuroqueer.com/neurodiversity‐terms‐and‐definitions/.
  61. Webster, A. , Bruck S., and Saggers B.. 2022. “Supporting Self‐Determination of Autistic Students in Transitions.” Research in Developmental Disabilities 128: 104301. 10.1016/j.ridd.2022.104301. [DOI] [PubMed] [Google Scholar]
  62. Wehmeyer, M. L. 1999. “A Functional Model of Self‐Determination: Describing Development and Implementing Instruction.” Focus on Autism and Other Developmental Disabilities 14, no. 1: 53–61. 10.1177/108835769901400107. [DOI] [Google Scholar]
  63. Weiss, J. A. , and Riosa P. B.. 2015. “Thriving in Youth With Autism Spectrum Disorder and Intellectual Disability.” Journal of Autism and Developmental Disorders 45, no. 8: 2474–2486. 10.1007/s10803-015-2412-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
  64. Yaar, E. , Gal E., Bedell G., and Lamash L.. 2024. “SPAN‐ASD: Pilot Implementation to Promote Functional Goals of Autistic Adolescents and Young Adults.” Research in Developmental Disabilities 155: 104864. 10.1016/j.ridd.2024.104864. [DOI] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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