Two important areas of self-determination for us are niche construction and flow. If we aren’t allowed to construct niches so we can achieve flow states, we aren’t sufficiently self-determined. In “Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability”, we detect themes of “let me build my niche” and “don’t harsh my flow” from the autistic adults surveyed.
The study touches on monotropism, though doesn’t mention it by name. Monotropism is one of three important themes we take away from this study:
Self-determination held the same meaning for Autistic people as non-autistic people. More specifically, participants discussed having the opportunity and support to make choices and decisions in life without unnecessary control from others. Experiences of self-determination were centered around: (1) lack of opportunity, influenced by ableist expectations and discrimination, and (2) executive processing differences that interfered with choice and decision-making. Desired areas of support related to providing opportunities to (1) make choices and exert autonomy, (2) be supported to unmask and be valued as one’s authentic Autistic self, and (3) offering pragmatic support for executive processing differences.Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
For example, Freda passionately stated, “I’m in charge of me…everything that has to do with me. Choices about my own agency…and I include in that pleasure and wanting to be who I want to be, like presenting my true self.” Kyle felt self-determination allowed him to flourish because it “is one path that allows a certain level of freedom or opportunities,” and Stephen commented that it was essential to “actively participate in life, not just exist.” Paul defined self-determination as:
…a combination of a person’s drive and ability to make choices. One who has a lot of self-determination is very passionate about the things they do and are able to make clear choices regarding their life…the ability to choose to do the things necessary for a happy, healthy life, but still maintaining success in their other affairs. It’s a sense of functioning independently. This doesn’t mean they need to do everything alone, but they are capable of functioning as an individual in their own way.
Multiple participants discussed how self-determination co-existed with meaningful relationships and partnerships, including family and parenting responsibilities. Although Kyle affirmed the value of freedom in making choices and decisions, he also acknowledged that interdependence is important because “having a group to lift you up or care for you is important for health and wellness.” Veronica acknowledged that “of course, I work with my husband for our finances and where we want to live and that kind of stuff, but day-to-day I’m pretty free to do whatever I want … [and] being able to plan what happens to me during the day is important to me.” Nancy, a married mother of four younger children, indicated that she adores parenting, but it required significant compromise:
I get to make choices about my day-to-day stuff but it feels like those choices … [sighs] kind of get compressed when the kids get home… it’s chaotic for even neurotypical people, but when you layer in, y’know, your obligation to your kids and also your own neurodivergence, it’s a very hard balance.
When asked about what choices in life were most important, participants highlighted a variety of choices where they felt having autonomy was critical, including daily tasks such as sleep schedules and how one spends their free time and/or money, as well as longer-term choices such as “what I want to do with my life” (Stephen). Some participants, like Emma, felt “All of them…what I do with my time, what I spend my money on, where I go, all of that. It kind of determines how your life will go when you make those decisions.” Notably, although no prompts were given related to specific areas in which participants wanted to feel a sense of autonomy, eight out of 19 participants commented that control over food was important. For example, Nayeli stated “Stuff around food! I have a lot of taste and texture stuff going on, so being able to choose what I can and cannot eat, that’s important.” Similarly, Dani commented that “It’s definitely nice having control over what I eat…I like having control over my food.” Furthermore, seven out of 19 participants commented that medical autonomy was essential. For example, Tia stated, “I want more medical autonomy, including being able to control the sharing of my information.”
Overall, most, but not all, participants felt that they had opportunities to be self-determined in some areas of their lives. However, all participants also expressed barriers to being self-determined related to their experiences as an Autistic person.Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
As indicated, a barrier to self-determination was a lack of opportunity, often due to a presumed inability to make appropriate choices.Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
Though the study doesn’t mention monotropism by name, elements of monotropism came up repeatedly.
Four participants discussed experiences with inflexible thinking or being so detail-focused that it interfered with decision-making.
Difficulties shifting focus were discussed by three participants. Both Freda and James used the term “hyperfocus” to describe their lack of choice in changing an activity.
For example, Kanti reflected that their need to learn everything about the options limited their ability to make seemingly simple choices, “my obsessiveness of autism means, like, I will read for a week which kind of hand mixer is best before making a decision … I cannot just make a snap decision and asking me to gives me anxiety.”
One of our favorite themes in the study is that of interdependence. The autistic adults surveyed in the study have good advice for “respecting autonomy in a society of interdependence and care”.
Multiple participants discussed how self-determination co-existed with meaningful relationships and partnerships, including family and parenting responsibilities.Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
Participants discussed that self-determination does not preclude their desire or need for support from others. Rather, obtaining support on one’s terms enacts self-determination.Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
All participants wanted broad societal acceptance and inclusion. However, most participants discussed that, rather than waiting for broader societal change that embraces neurodiversity, they strive to or have already surrounded themselves with others who are supportive and on whom they can rely and feel emotionally safe to be their authentic selves. For example, Kanti went on to express that, in pursuit of their passion to live authentically, they “have worked very hard to build a community around myself of kind of like-minded people, so there’s a certain kind of mutual understanding, and I find a lot of acceptance in that.” Similarly, James appreciated support from “accepting others, like my family who I can rely on.”Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
The term autonomy, a component of being self-determined, is often misinterpreted as independence. However, making one’s desires and needs known, including asking for support, is being autonomous (33). Like our participants, Shogren and colleagues (34) indicate the relevance of support to self-determination, as put in their succinct definition that self-determination is, “having opportunities and supports to make or cause things to happen in your life” (p. 289).Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability
We’ll read those as a celebration of our fundamental interdependence.
We feel this one:
“I’m afraid of asking too much of people, but I really want people to offer help so it does not always feel like I’m asking. I guess I’m always afraid of, like, asking too much of other people.”Frontiers | Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability