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ORIGINAL ARTICLE
Journal of Autism and Developmental Disorders
https://doi.org/10.1007/s10803-025-06812-0
By conventional metrics, autistic people often experience
lower levels of independence than their neurotypical peers
(McLeod et al., 2019, 2021; McQuaid et al., 2022). Such
metrics are typically reliant on denitions of indepen-
dence based on the measurable amount of support a person
requires. With this in mind, the focus of research has often
been on the nature of transitions to adulthood, with employ-
ment being seen as a key factor in allowing someone to live
without substantial support. In the United Kingdom (UK),
only 29% of autistic adults are in some kind of paid employ-
ment, while 76% of autistic adults live with their parents
(Ayoubkhani et al., 2021). Autistic people are also less likely
to possess their own homes, as compared to other neurodi-
vergent and disabled groups of people (Ayoubkhani et al.,
2021). Despite recent advancements in our understanding
of autism, there is little research about how autistic adults
dene and experience independence. In developing our
understanding of autism in adulthood, exploring what being
independent means to autistic people, and investigating the
Piyali Bhattacharya
piya.bhattacharya4@gmail.com
Rose J Matthews
rosematthewsresearch@gmail.com
Rae Field
reld@hotmail.co.uk
Hannah Heath
h.heath@bham.ac.uk
Kate A. Woodcock
k.a.woodcock@bham.ac.uk
Andrew D. R. Surtees
a.surtees@bham.ac.uk
1 School of Psychology, University of Birmingham,
Birmingham, UK
2 Independent Researcher, Durham, UK
Abstract
Autism diagnostic criteria relate to diculties in functioning across multiple developmental domains, that often impact
on a person’s independence. There are dierent ways to conceptualise and exercise independence, but no previous stud-
ies have questioned how autistic adults do so. This qualitative study aimed to understand how autistic adults dene and
experience independence. It was designed to further our understanding of how autistic adults account for and use coping
strategies to overcome barriers to independent living and navigate their way to their desired level of independence. Twelve
semi-structured interviews were conducted with autistic adults living in the United Kingdom. The data were analysed
using reexive thematic analysis. The researchers generated three major themes. The rst theme ‘Independence is “not a
one-size-ts-all”’ highlights that there is no one denition or concept of independence for autistic people; these are rela-
tive and uniquely individual. The second theme ‘“Being autistic has its setbacks” in a neurotypical world’ describes the
obstacles encountered by autistic adults seeking independence within a society that favours neurotypical norms. The third
theme ‘Finding ways of making it work’ captures strategies autistic adults use in achieving or maintaining independence.
The ndings from this study provide a foundation for future research exploring domains of independence for autistic
adults. The perceived desirability of achieving dierent degrees of in(ter)dependence and the uctuating nature of self-
suciency are explored through lived experience. Increasing understanding of barriers and challenges to independence
has the potential to empower autistic adults and improve services and support.
Keywords Independence · Autistic adults · Lived experience · Empowerment · Thematic analysis · Qualitative study
Accepted: 19 March 2025
© The Author(s) 2025
Experiencing Independence: Perspectives from Autistic Adults
PiyaliBhattacharya1· Rose JMatthews2· RaeField1· HannahHeath1· Kate A.Woodcock1·
Andrew D. R.Surtees1
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Journal of Autism and Developmental Disorders
factors that impact their ability to achieve this, is extremely
important. It will allow us to understand how, when and
where autistic people want to exercise their independence.
Further, it will help optimise environments, and provide
support and adjustments for autistic people who want and
need them (Thompson et al., 2018).
Independence has predominantly been operationalised
from a neurotypical perspective (Henninger & Taylor,
2013; Hume et al., 2014; Hume & Odom, 2007; Wehmeyer,
2000; Zimmer-Gembeck & Collins, 2006). The most com-
mon approach to dening independence revolves around the
ability to complete functional aspects of daily living, such as
cooking, bathing, etc. (Hume et al., 2014; Hume & Odom,
2007; Wise et al., 2020). However, this is not the only way
that people consider themselves to be independent. Having
a job, being economically self-supporting, and living away
from one’s parents may also be seen as denitional aspects
of independence (Cunningham & Diversi, 2013).
Several studies have suggested that autistic people expe-
rience particular challenges in achieving conventionally-
dened independence, relating to functional (Gotham et
al., 2015; Lin et al., 2012) and psychological (Cooper et
al., 2017; Nguyen et al., 2020) aspects of independence.
Why autistic people experience lower independence may
be explained by a range of contributory factors (Hong et
al., 2016; Hume et al., 2014). These include the core char-
acteristics of autism (Howlin, 2005; Howlin et al., 2000;
Hume et al., 2014), or co-occurring mental health condi-
tions, such as anxiety and depression (Lai et al., 2019).
Cognitive challenges relating to executive functioning can
also impact goal-setting, planning, memory, task-switching,
and exibility, all of which can all be vital for independence
(Hume et al., 2014; Ozono & Schetter, 2007). Further-
more, structural and environmental factors, such as barriers
to employment, lack of workplace support (Lorenz et al.,
2016), inadequate training (Kim, 2024), and inaccessible
leisure and public services (Brewster & Coleyshaw, 2011),
due to sensory and environmental challenges (Doherty et
al., 2023; MacLennan et al., 2023) have resulted in sig-
nicant inequalities. These challenges also lead to adverse
outcomes, such as restricted access to services and support,
social isolation, economic disadvantage, nancial precarity,
and poor health (Pellicano et al., 2022).
Despite the signicance of independence for autistic peo-
ple, service providers, and policymakers, no studies have
explored how autistic people conceptualise and experi-
ence their own independence. A few studies have, however,
examined autistic people’s perspectives on the factors that
inuence their independence. These studies have primarily
dened independence from the perspective of independent
living - living on one’s own, the nature of one’s physical
living arrangements, and specic functional abilities (Al
Ansari et al., 2024; Ghanouni et al., 2021). Ghanouni et
al. (2021) investigated independent living in autistic adults
in Canada, interviewing 13 autistic adults and six parents.
The authors concluded that autistic adults’ ability to man-
age their nances and live within integrated communities
and housing, whilst managing their autistic characteristics
contributed to independent living (Ghanouni et al., 2021).
However, this paper focused solely on the functional aspects
of independence. A more recent qualitative study explored
the independent living arrangements of 11 Australian autis-
tic adults when considering the moving out (transitioning)
phase, and their challenges related to that phase (Al Ansari
et al., 2024). They found that personal space with autonomy
and control, and the impact of diagnosis on accommoda-
tion choice and freedom, contributed to independent living.
Both these recent qualitative studies (Al Ansari et al., 2024;
Ghanouni et al., 2021) conated independent living (pro-
cess of home-leaving) dened by physical, functional, and
logistical aspects like housing, nances, and living arrange-
ments, primarily equating it with the capacity to live with-
out parental support. Moreover, both studies focussed on
pre-determined, neurotypical descriptions of independence,
primarily based on an adaptive functioning1 framework. In
doing so, they neglected alternative autistic perspectives,
which are essential to a holistic understanding of the subject.
It is critical to distinguish between “independence” and
“independent living,” as these concepts, while intercon-
nected, are not synonymous. Although these concepts are
often seen within a normative developmental trajectory
associated with entering adulthood, autistic people may
perceive independence in dierent ways, irrespective of
living arrangements. A qualitative study that actively seeks
to understand how autistic people conceptualise and expe-
rience their independence is crucial. Such research can
challenge the traditional, neurotypical narrative that often
denes independence in narrow, standardised terms. It may
also provide a more inclusive understanding of what inde-
pendence means to autistic adults, better reecting their val-
ues, strengths, and diverse life circumstances.
To eliminate barriers and support autistic adults towards
desired levels of independence, we need not only to under-
stand autistic perspectives on independence but also to
understand autistic perspectives on coping mechanisms.
Several qualitative (Dachez & Ndobo, 2018; Ghanouni
& Quirke, 2023) and quantitative (Muniandy et al., 2022)
studies have been conducted to examine the coping mecha-
nisms autistic adults use to navigate life independently.
Special interests, militancy, diagnosis, seeking support from
neurotypical friends, seeking support from animals, normal-
isation, intellectualisation, and humour (Dachez & Ndobo,
1 Day-to-day functioning, includes daily living, communication, and
socialization abilities (McQuaid et al., 2022).
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Journal of Autism and Developmental Disorders
2018), seeking emotional support, engaging in recreation
and leisure, adopting technology to adjust routines (Gha-
nouni & Quirke, 2023), social camouaging (Hull et al.,
2017; Schneid & Raz, 2020) are some of the strategies that
autistic adults have identied using to navigate their way
towards independence. Again, though, studies have tended
to explore coping mechanisms through neurotypical frame-
works and expectations of adaptive and social functioning,
rather than investigating how coping mechanisms allow
autistic people to achieve independence on their own terms.
Independence is a complex concept, operationalised in
myriad ways (Hume et al., 2014). So far, studies have con-
ceptualised independence from a neurotypical perspective,
and most evidence has come from non-autistic people, such
as service providers, researchers, and parents (Gillespie-
Lynch et al., 2017). It is crucial to involve autistic people
in discussions about how they perceive and dene inde-
pendence rather than creating a one-size-ts-all denition
of independence based on societal norms and expectations
that may dier from their aspirations (Botha & Cage, 2022;
Fletcher-Watson et al., 2019). This qualitative study is
designed to gain an in-depth understanding of how indepen-
dence is conceptualised by autistic adults in the UK.
The research questions of this study were:
1. How do autistic adults in the UK make sense of experi-
encing independence?
2. How do autistic adults in the UK develop coping strate-
gies to tackle the barriers to independence and navigate
their way towards independence?
Methodology
The study employed a qualitative research design using
Reexive Thematic Analysis, within an “iterative-inductive
approach” (O’Reilly, 2012, p. 30) to explore and evaluate
themes through semi-structured interviews. This approach
emphasises ‘uidity and exibility’ in the research pro-
cess (Braun & Clarke, 2019). This was attempted by keep-
ing in mind that the autistic adults were expert informants
and guides on their own unique worlds and that their per-
spectives should be prominent throughout the study. We
employed a critical realist philosophical stance. Many
recent qualitative studies with autistic people have adopted
this approach (Botha et al., 2022a, b; Raymaker et al., 2023)
and generated meaningful interpretations. In this study, crit-
ical realism focused on the lived experiences of participants
in relation to independence, whilst also incorporating the
cultural and social factors and insights that form the basis
of their narratives. Autistic people are frequently discrimi-
nated against and marginalised (DePape & Lindsay, 2016;
Radulski, 2022), foregrounding their perspectives was a way
of acknowledging the epistemic injustice they experience.
Recruitment & Participants
Twelve autistic adults were recruited through responses
made to adverts shared with a local autism research data-
base, local support groups, and charities. As 10–20 is a rec-
ommended sample size for a medium TA project (Clarke,
2013), we implemented a reexive approach to recruitment.
All eligible participants who responded were recruited on a
rst come, rst served basis. We ceased recruitment when
we felt there were enough data to adequately address the
research question (Braun & Clarke, 2021b). This deci-
sion was guided by the concept of information power,
which suggests that the more relevant and richer the data,
the fewer participants are needed to answer the research
question (Malterud et al., 2016). The process was iterative
as throughout the recruitment process, we continuously
reviewed the data, assessing its depth and relevance in rela-
tion to the study’s aims. As we analysed the data, we found
that the information being gathered was suciently focused
and directly addressed the research question, without the
need for additional participants.
Participants were eligible if they were diagnosed with an
autism by a certied professional, were aged between 18
and 50 years, and had the capacity to give informed con-
sent, in accordance with the Code of Human Research Eth-
ics (Code of Ethics and Conduct, 2021). Applicants were
not eligible if they had severe and enduring co-occurring
conditions, including intellectual disability, severe mental
illness (e.g., Schizophrenia, Bipolar Disorder, Personality
Disorder, etc.), physical health problems (e.g., cancer, TB,
etc.), or sensory impairments (e.g., deafness or blindness).
This was due to the signicant impact that these conditions
would be likely to have on independence, contributing to
the complexity of understanding the impact of autism on
independence (Bishop-Fitzpatrick & Rubenstein, 2019; Lin
& Huang, 2019; Mason et al., 2018).
Participants were UK residents, aged 24 to 48 years
(mean age = 32.41 years), seven were male. The average age
of diagnosis of autism was 21.58 years; see Table 1 for the
detailed demographics of the participants.
Ethics
This study was reviewed and approved by the Science,
Technology, Engineering, and Mathematics committee. All
participants were assigned a unique code and transcripts
were anonymised. Prior to interview, participants were
informed about the purpose and process of the study, while
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Journal of Autism and Developmental Disorders
potentially sensitive topics in interviews was followed (Sil-
verio et al., 2022), including establishing rapport through
the interviewer introducing themselves and engaging in
basic self-disclosure. Participants were not provided with
an operational denition of independence at the time of
enrolment. This was a deliberate methodological decision
to avoid imposing a predened framework that could bias
participants’ conceptualisation of independence. Instead,
participants were given freedom to express their own per-
spectives on what independence meant to them, ensur-
ing that their experiences and viewpoints were captured
authentically.
Care was taken to follow the participant’s lead during the
interview while navigating the conversation using the semi-
structured interview question guide. Participants were not
pressed to answer any questions and instead were encour-
aged to talk about their experiences. Additional open-
ended questions were used to prompt more information
from participants when deemed necessary (Adams, 2015).
Throughout the interview, PB took detailed notes, captur-
ing thoughts, feelings, impressions, and key responses from
the participants. These notes were used to complement the
audio recordings and to provide additional context for later
data analysis (Trainor & Bundon, 2021). The interviews
were transcribed by RF and underwent a quality check by
PB to ensure accuracy. This was done by reading the tran-
scriptions alongside listening to the original recording and
making changes as appropriate. These interviews lasted half
an hour to one and a half hours (Mean = 1 h). Participants
were compensated with a £10 Amazon gift voucher.
Data Analysis
We analysed our data using Reexive Thematic Analysis
(RTA). RTA was deemed appropriate for this study because
it is data-driven, adaptable, and sensitive to examining
complex meanings within data, which is crucial for issues
that have not yet been well investigated (Braun & Clarke,
2019, 2021b). RTA’s exibility oered the possibility for an
inductively developed analysis which helped us to capture
semantic and latent meanings and oered both descriptive
and interpretative accounts of the data (Braun & Clarke,
2021b). RTA is not tied to a theoretical framework and thus
oers a exible approach in exploring diering autistic per-
spectives on independence, thereby allowing for an expe-
riential analysis of the patterns of meaning across the data
(Braun & Clarke, 2019, 2022).
This approach aimed to explore recurring patterns within
the data, bringing attention to signicant facets of the con-
cept of independence seen from autistic adults’ perspectives.
We followed a 6-step process in analysing the data using
RTA, as outlined by Braun and Clarke (2019). This was
assuring their voluntary participation. All data were stored
in accordance with university regulations.
Data Collection
Interviews were semi-structured, facilitating in-depth dis-
cussion between the researcher and the interviewee (Adams,
2015). The schedule (see supplementary materials) was
designed by the primary researcher (PB) and revised and
improved after consultation and discussion with other mem-
bers of the research team (AS & KW). The questions were
open-ended and focused mainly on autistic adults’ percep-
tions of experiencing independence, lived experience of
independence in their day-to-day life, major hurdles and bar-
riers that stood in their way to independence, and strategies
they used to overcome these to experience independence.
Potential participants were provided with an overview of
the study, including an explanation of its objectives. Those
who were interested in participating were invited to contact
the lead researcher (PB) and asked to sign an informed con-
sent form. Interviews for the study were completed between
November 2022 and March 2023 by PB, using a secure
institutional Zoom licence. Good practice in discussing
Table 1 Demographic characteristics of the sample
Characteristic Full Sample = 12
Age years; M, (SD), [Range] 32.5 years,
(8.2), [24–48]
Gender, n (%)
Female 3 (25%)
Male 7 (58%)
Nonbinary 2 (17%)
Marital Status, n (%)
Married 2 (17%)
Unmarried 10 (83%)
Living arrangement, n (%)
Living with parents 4 (33%)
Living with partner/spouse 3 (25%)
Living alone 3 (25%)
Living with housemates 2 (17%)
Employment Status, n (%)
Employed 11 (92%)
Not Employed 1 (8%)
Age of Autism diagnosis; M, (SD), [Range] 21.5 years,
(12.3), [5–46]
Diagnosed in childhood/adolescence 5 (42%)
Diagnosed in adulthood 7 (58%)
Co-occurring mental health conditions, n
Depression 7
Anxiety 6
Attention Decit Hyperactive Disorder 4
Obsessive Compulsive Disorder 2
Agoraphobia 1
Insomnia 1
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Journal of Autism and Developmental Disorders
and skilled researchers (Gillespie-Lynch et al., 2017; Grant
& Kara, 2021). The phrase “Nothing about us without us”
(Hoekstra et al., 2018, p. 40) is frequently used to describe
how autistic people have the right to be involved in deci-
sions made about public policy and services that aect
them. Two autistic researchers contributed to co-creating the
themes and sub-themes that have oered valuable rsthand
insights into the lived experiences of autistic participants,
ensuring that the themes were more accurate, relevant, and
reective of their unique perspectives. Their involvement
helped identify subtle nuances and meanings that neuro-
typical researchers might overlook, enhancing interpretive
rigor and leading to a more inclusive and comprehensive
data interpretation (Botha & Cage, 2022). While autistic co-
researchers actively participated in data analysis and subse-
quent stages, their involvement began too late to inuence
the initial research design and data collection process. If
autistic collaborators had been involved earlier, the research
would have been more inclusive and robust (Hobson et al.,
2023; Kaplan-Kahn & Caplan, 2023; Stark et al., 2021).
Reexivity & Embodiment
Four authors of this study are non-autistic, and the remain-
ing two are autistic. Five authors have a background in
Psychology, with four specialising in autism research. PB
identies as an Indian, heterosexual, neurotypical female.
AS, KW, and HH are Caucasian, from the UK, heterosex-
ual, and serving as senior researchers with 10–20 years of
research experience. RM is white British, non-binary, neu-
roqueer, and an experienced autistic autism researcher, and
RF is a postgraduate female autistic researcher. The neuro-
diversity viewpoint shared by all authors acknowledges that
although autistic people experience unique ways of seeing
the world, these are not signs of weakness (decits). The
diverse backgrounds of the team - culturally, neurodevel-
opmentally, and in terms of gender identity - enhanced the
reexivity of the research process by challenging potential
biases and ensuring that dierent viewpoints were actively
considered and incorporated into the analysis. This reexive
approach strengthened the project’s commitment to captur-
ing the nuanced experiences of autistic people, particularly
in how they dene and experience independence.
Results
The reexive thematic analysis of twelve interviews led to
the creation of three primary themes:
done by engaging and familiarising ourselves with the data,
taking a conscious, thoughtful, reective, and intentional
approach. PB initially coded the transcripts. Line-by-line
coding was conducted which generated semantic (descrip-
tive, surface-level) and latent (underlying, implicit) hand-
written codes. After PB completed coding all the transcripts,
RM reviewed both the code list and the text by re-reading
the transcripts, focusing on the micro-level meaning which
helped to develop “ne-grained codes” (Braun & Clarke,
20062021a, p. 42). During this review, RM focused on the
micro-level meaning of the participants’ responses, paying
close attention to subtle nuances, patterns, and underlying
themes that may have been missed in the rst round of cod-
ing. This careful and detailed examination allowed RM to
“ne-grained codes” (Braun & Clarke, 2021a, p. 42), cap-
turing more precise distinctions in meaning and rening the
overall coding structure.
PB subsequently created the initial themes through an
inductive approach, by clustering overarching codes accord-
ing to the meaning or underlying central-organising con-
cepts. This method involved identifying patterns in the data
and clustering codes that reected similar ideas, allowing
overarching themes to be generated from the content. Each
theme and specic segment of coded text identied by PB
underwent a thorough review and renement process dur-
ing coding discussion meetings with RM and RF. This was
done by visually mapping the themes and sub-themes into
a spreadsheet which aided in the renement of the boundar-
ies between themes and connections within the sub-themes.
Full consensus on coding and the development of themes/
subthemes was reached among PB, RM, and RF during
these discussions. We encountered challenges during the
process, due to diering perspectives rooted in neurodevel-
opmental experiences. These challenges mainly centred on
language and terminology, as certain terms were interpreted
dierently by autistic researchers. In some cases, there were
conceptual disagreements as well, particularly around the
notion of “achieving independence” being framed as a “tri-
umph”. The autistic researchers expressed discomfort with
this idea, as it implied that dependence was inherently nega-
tive, which conicted with their views on interdependence
and support within the neurodivergent community. This dif-
ference in perspective required careful navigation and col-
laboration to ensure that the nal themes were inclusive and
reective of both neurotypical and neurodivergent view-
points. The themes and subthemes were then presented to
AS and KW for additional discussion and renement.
Community Involvement
It is becoming more widely acknowledged that autistic
people are knowledgeable experts on the autistic experience
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Journal of Autism and Developmental Disorders
be as independent as I am now? Probably not, because
you’d stay in your comfort zone. [P9]
Parents often played a pivotal role in the development of
independence by determining whether participants had
the option of carrying on living at home and whether they
jumped willingly into independence or felt pushed. Some
participants reported being forced into independence by
perceived neglectful parental relationships.
I basically parented my mum from the age of 8. And
then my sister and my- and then my half-sisters. So,
she- yeah, I didn’t really have a parent. My dad wasn’t
really around. Um, my parents split up when I was-
well, they divorced when I was 8. [P4]
Other participants reported pushing back against parents
who they felt had undermined their independence by being
over-protective. They recounted a sense of having been
“infantilised and underestimated” [P5] for a signicant part
of their life. In one instance, nancial exploitation by their
mother had exacerbated the participant’s desire for indepen-
dence. In such circumstances, achieving independence was
viewed as a “necessity” [P9] rather than a “choice” [P9],
and driven by a deep-seated need to validate their capabili-
ties and assert their autonomy.
Conversely, for other participants, independence was
seen as a matter of choice, something they could pursue or
defer with no xed timescale. In these interviews, we see
the complex interplay between an internal desire for inde-
pendence and external limitations or uncertainties.
I’m kind of looking more towards independence than
I previously did… although I might be mentally, prob-
ably ready for it, physically, I probably am not… it’s
more of a sort of mismatch… I might want it in my
head, but I’m probably not ready for it. So, therefore, I
Theme 1 - Independence is Not a one-size-ts-all
depicts qualitative dierences in how autistic adults
understand independence in a multitude of ways.
Theme 2 - Being autistic has its setbacks in a neuro-
typical world depicts how autistic people experience a
range of diculties and challenges in achieving inde-
pendence in a predominantly neurotypical society.
Theme 3 - Finding ways of making it work charts how
autistic adults navigate or accommodate barriers to
independence.
The holistic concepts of the themes presented incorporate
the following sub-themes, so the gure below (Fig. 1) is
presented as a visual summary of the main elements of each
theme.
Theme 1: Independence is “not a one-size-ts-all”
There is no one denition of independence for autistic peo-
ple as participant highlighted there is “no one size ts all”
[P2]. Participants described independence as a relative con-
cept, not an absolute one, reporting that everyone’s deni-
tion will be dierent depending on “context, circumstance,
life choices, life changes, expectancy” [P2], encompassing
diverse degrees and interpretations. The sub-themes reect
this variability.
Independence - A “necessity” and/ or a “choice”
Participants regarded independence as important for all
autistic people, and some participants had felt compelled to
become independent out of “necessity” [P9], due to their
personal circumstances.
I was thrown into the independence… I had to learn to
do it, whereas if I had all the family support, would I
Fig. 1 Participants’ perspectives on experiencing independence (Themes & Sub-themes)
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Journal of Autism and Developmental Disorders
pushing emotions aside, self-blaming for a perceived lack
of resilience, and delayed emotional processing. All these
experiences presented signicant challenges which could
compromise independence and yet they were largely
invisible.
You know, for the most part, and probably outwardly,
to other people, I would seem very independent and
capable of doing everything on my own. But I think
the- the level of that independence varies from day to
day, um, dependent on all of those other factors, um,
for sure. Um ‘cause you know, I denitely notice my
ability to be able to do things on my own, denitely
slips when I’m not doing well (…) um my emotions.
So, if I’m feeling [little pause] lower, I am able to do
less. [P5]
The unseen dimensions of independence, described above,
may be unrecognised by outsiders, such as families and
social care professionals, who regularly focus purely on
functional independence (can someone wash, dress, prepare
meals, manage money, travel independently, work).
Theme 2: “Being Autistic has its Setbacks” in a
Neurotypical World
This theme explores how autistic people’s independence
is aected by the challenges and disadvantages associated
with being autistic. Our participants explained how being
“perceived as dierent” [P12] impacts acceptance and
understanding. For several participants, “being autistic has
its setbacks” [P3, P8] in a neurotypical society, not designed
to meet their needs, compromised their well-being and
independence, due to the lack of understanding and accom-
modation of core autistic traits. Associated obstacles and
limitations restricted their independence in everyday life.
Examples participants gave included diculty accessing
community resources such as healthcare settings and super-
markets, and the struggle to maintain personal and working
relationships amidst the confusion of unwritten rules.
Impact of Mental Health, Trauma and Abuse
Despite participants with severe and enduring mental health
problems being ineligible, participants still experienced
a range of mental health challenges, including anxiety,
depression, obsessive compulsive disorder (OCD), and
complex post traumatic stress disorder (PTSD). Several of
them also mentioned suicidal thoughts, which they associ-
ated with their ability to live independently.
don’t want to jump yet, but I’m- I’m moving more that
way. [P10]
Most participants voiced uncertainty about their ability to
live independently due to concerns about nancial stability.
They questioned whether they would have the condence to
manage on their own, particularly as they anticipated that
living independently of their parents would not aord them
the opportunity to save money. The need to balance personal
aspirations and external constraints had to be factored into
decision-making surrounding the pursuit of independence.
Participants described the dichotomy of independence as
either a “necessity” [P9] or a “choice” [P9], emphasising
that becoming independent can be shaped by social cir-
cumstances and access to basic resources, or by personal
preferences, deliberate decision-making, and individual
capabilities. Crucially, what drove participants to move
towards independence played an important part in how they
understood it (sub-theme There are Unseen Dimensions to
Independence).
There are Unseen Dimensions to Independence
To be independent, I need the multiple variables
[pause] to be- in line. Um- [pause-tutting sound] and
everything, latency, duracity, time, to be also in line.
(…….) Independence as a sense of [pause], function-
ality and that functionality that we talk about (………)
functional importance. But let’s not miss the major
point in the room. This is where [a] concept comes
into play to have functional importance and function-
ality, you rstly, need to have psychological func-
tionality. Independence coincides with psychological
wellness. If I’m not psychologically well, am I going to
feel like I’m gonna be able to independently do every-
thing? [P2]
The complexity and variability of what becoming indepen-
dent means for autistic people are often underestimated,
where the focus is on the “functional importance” [P2]
(activities of daily living). Our participants spoke about
independence as multi-dimensional, encompassing emo-
tional, cognitive, social and psychological dimensions of
independence. Some of these aspects were associated with
autistic or alexithymic characteristics; many of our par-
ticipants reported diculties with independence stemming
from challenges in recognising, expressing or regulating
emotions, and a few described sensitivities to injustice and
conict. Participants highlighted situations in which emo-
tions had inuenced their thoughts, attitudes, or behaviours
unintentionally. They also described rumination, diculty
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Journal of Autism and Developmental Disorders
my house. Sort of, I- which- which, in terms of inde-
pendent living, is- I had to then go somewhere else
because of the noise factor (….) and it was just like,
I cannot live independently here because of the noise
[smiles] I have got to go somewhere where there is not
noise. Um, so then I had to go to my parents’ house.
[P7]
The eort required to navigate a world that did not always
understand or accommodate neurodivergence meant that
many participants described feeling constantly on the verge
of becoming mentally and physically drained, which put
their independence at risk.
Living on the Brink of Exhaustion and Overwhelm
Participants reected on diculties they faced in match-
ing their natural communication style with neurotypical
social expectations, to maintain personal and professional
relationships. Participants also made frequent references
to being overwhelmed by trying to socialise appropriately
(as dened by neurotypical standards) which eventually
contributed to “burnout” [P2] and played a critical role in
undermining their independence.
I was having m-a-j-o-r struggles- in my job role and
communication, sensory sensitivities, um- extreme
stress. Um- [pause, tutting sound] um- interpretation
of language wrong, interpretation of actions wrong.
What I deemed appropriate wasn’t particularly appro-
priate. Um- although the intention was honourable,
the appropriateness was perceived not being honour-
able. [P2]
Participants described how they found it challenging trying
to navigate social norms and build relationships indepen-
dently in social or organi sational contexts, as demonstrated
by P2 (above). Several participants reported social anxiety
about their perceived “poor social interaction” [P11] skills
which made them “worried about being misunderstood”
[P4]. They talked about how they struggled to see the hid-
den meanings or intentions behind the words people were
saying and could be misinterpreted themselves. It was clear
from these accounts that the constant sensory overwhelm,
frequent mutual misinterpretations, and the need to com-
bat and manage stress on a daily basis were undeniably
“exhausting” [P4, P8, P9] and took a toll on participants’
ability to function independently. As a result, they often
found themselves living on the brink of exhaustion and
overwhelm.
Several participants attributed challenges in developing
daily living skills to a lack of early learning opportunities; in
My mental health, ties into my um- independence. If
I’m having really bad mental health issues at the time,
my independence will take a knock, I won’t do as many
normal things as I would. I won’t- I’ll struggle to sleep
at night, so therefore get up late for work, and I’ll be
stressed. [P12]
Most participants highlighted the pervasive and cyclical
nature of the challenges that they faced due to “being autis-
tic” [P3, P4, P8, P9], such as being subjected to repeated
bullying, abuse, manipulation, and hurt by people in their
lives (family, friends, partners, colleagues, acquaintances).
This often went unnoticed or unaddressed by people sur-
rounding them and took a huge toll on their mental health
and independence.
I was bullied at school because I didn’t t in. I was
also bullied because I was a geek. I was what they
call a dweeb. I- I actually worked hard, um- but I was
bullied so badly by the time I got to A levels that I
stopped- I stopped working. I stopped going to school,
and I messed up my A levels. And I went back to school
at 30. [P4]
Compromised mental health often had a signicant impact
on participants’ independence, aecting their ability to per-
form daily tasks and engage in activities they enjoyed.
Lack of Accommodation of Core Autistic Traits
Participants highlighted the uid nature of independence,
which varied from day to day depending on mental health,
stressors, and life circumstances such as living arrangements,
relationship status, and work pressures. A deterioration in
mental health often resulted in disruption of routines that
provided predictability, creating a vicious cycle of chaos.
Most participants reported constant and intense struggles
in managing the demands of daily life, including decoding
confusing neurotypical communication and behaviour, and
lack of appropriate accommodations for their needs, includ-
ing sensory sensitivities. All these challenges contributed to
the feeling that the world was hostile and unwelcoming to
autistic people, and potentially overwhelming, which made
it dicult for them to be fully themselves and hindered their
ability to live independently.
They were resurfacing the roads nearby, one day, and
it meant that they had these uh- rollers going on, and
they had, like these jacks on the road, so the- the big
roller sort of also vibrates, but it created really sort of
high pitch do-do-do-do-do sort of noise, and er I just
couldn’t cope with the noise. Basically, I had to leave
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Journal of Autism and Developmental Disorders
continuously throughout my life. Because, uh, emo-
tions are dicult. [P8]
Formal or informal mental health support was generally not
seen as a “quick x” [P2], but as a lifelong maintenance
requirement to oset periods of intense emotional stress and
enable them to sustain their desired level of independence.
I think, having a good group of people is important,
um, in terms of support…. I think it’d be nice to have
more support, but I think you can still be independent
through that. Um, I think uh distinction for indepen-
dent living is when you have people come in to do
things for you. Um, and less less so out of ah choice,
but more because you can’t do them. [P7]
Several participants were taking proactive steps to address
their individual needs and maintain their mental health and
well-being through counselling and therapy. This provided
a safe space for them to explore emotions, identify triggers,
and develop healthier ways of living that enabled them to
thrive, thereby helping them live more independently.
Camouaging as a Survival Technique
Participants, for the most part, felt forced into using mask-
ing, camouaging, or compensating strategies to appear less
“dierent” [P12] from neuro-typical people, which they
saw as a key factor in tting into society and thereby gain-
ing independence. Participants shared lots of examples of
eortful tactics designed to improve communication, such
as preparing planned scripts in advance rather than extem-
porising when interacting with non-autistic people.
I’m acting all the time and then I found out what
masking was, and I was like, oh… this is just another
reason to make me re- realise that I am autistic, ah.
Um, so yeah, I, you know, I’ve always kind of seen it
as a bit of a show. And, so others would say, oh, you
know, you are really chatty, you are like charming,
and things like that, and it’s just like, whilst, that might
be the case to them, that’s a LOT of eort for me, you
know. It doesn’t come easily. I’m not doing it- it’s not
natural. Um, I feel like I have to put a lot of energy and
eort into being, you know; being able to socialise in
the way that everyone else is. [P5]
As participants evidenced, failure to conform to social
norms around “greeting with hugs” [P9] and engaging in
“small talk” [P3, P5, P6] can result in autistic people being
labelled as “rude” [P11] and may lead to them being mis-
treated or even being bullied. This can encourage autistic
some cases, they thought that they had been exempted from
doing chores in childhood because they were autistic. Par-
ticipants believed that earlier exposure to daily living skills
would have enhanced their capabilities and made them more
independent. One participant stated that, “people are just
very reluctant to give autistic people their independence,
because, um, they’re autistic, and they react to certain situ-
ations, uh, very adversely, to you know, other- children, you
know. I’ve- I had a lot of moments where I’d panic and melt-
down and cry as a kid, and, um, I was a little bit sheltered,
uh because of that” [P8].
Structural and systemic factors such as reduced parental
expectations, societal reluctance to recognise autistic peo-
ple’s capabilities, and a lack of appropriate support created
barriers to independence and autonomy which sometimes
seemed insurmountable to participants.
Theme 3: Finding Ways of Making it Work
This theme underscores how participants found ways of
navigating challenges and striving for independence, despite
the challenges posed by being autistic in a predominantly
neurotypical society and often having co-occurring mental
health conditions. Participants talked about their experi-
ences of four main approaches they took to try to achieve or
maintain their desired level of independence: (i) getting sup-
port with their mental health and well-being, (ii) not being
their authentic autistic self in order to be accepted by neu-
rotypical society, (iii) advocating for their rights and rais-
ing awareness of autism, and (iv) “avoiding throwing away
the good with the bad” [P11] (trying not to make impul-
sive decisions when things got too dicult to cope with).
Through employing these strategies, participants strived to
carve out paths that enabled them to lead fullling and inde-
pendent lives despite the obstacles they encountered.
Not Going it Alone
Many participants emphasised the importance of mental
health support in maintaining their desired level of indepen-
dence, acknowledging the supportive role of friends, family,
and professionals.
Since I was 12, I’ve been having counselling on and
o. So it’s something I think I’m gonna have to have
throughout the rest of my life, (….) Um, because, I
don’t know, I guess when I nished counselling, I’m
kind of like, I’m refreshed. I feel great again. You
know, I’m back to myself, um, but like, I think, you
know, me, myself, is someone who just needs that,
‘cause that is just the support- support I will need
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Journal of Autism and Developmental Disorders
um, they’re autistic, and they react to certain situa-
tions, uh, very adversely. Because I think that’s one
thing, a lot of autistic people struggle with, is having
this bridge between autistic people and non-autistic
people. [P8]
If autistic participants reacted adversely to situations, this
was seen to justify restricting opportunities further rather
than addressing contextual and environmental issues. The
t between person and environment was seen to be a key
determinant of independence by participants.
Avoiding Throwing away the Good with the Bad
Recognising the external challenges that people must over-
come, participants explored internal characteristics that act
as barriers to independence. Several participants recognised
their tendency to dwell on negative emotions which made
it dicult for them to recognise their strengths and achieve
success. Through the interviews, participants highlighted
how someone’s mindset can inuence their sense of self and
level of condence, which in turn impacted their ability to
live independently.
I dwell a lot on my emotions [smiles], on my negative
emotions. I- I love to sit and ruminate on bad feelings,
which I don’t think is a good thing. Um, I just know I
do it a lot. I think I’m a lot more resilient than I give
myself credit for. I’d like- I- I think I’m a mess all the
time. I feel like life never gives me a break. [P8]
Participants also sometimes believed that they did not give
themselves enough credit for coping in dicult circum-
stances where one challenge followed on from another.
Subjectively they felt like a mess, emphasising a negative
outlook, but objectively they realised that their resilience in
battling with negative emotions was helping them to attain
or regain their independence. This was explicitly stated by
one participant, it’s very easy to make your life worse. It’s
very hard to make it better sometimes. So, I just keep think-
ing where instead of just saying all this is rubbish, I’m just
going to throw it all away. Don’t, because you still have
something. You know, it may not be what you once hoped it
was, but you still got something [P11].
Moreover, when asked about what they can do to be more
independent when life is generally hard, some participants
recognised that they risked impulsively abandoning valu-
able assets or chasing after things they did not really want
or need because of the pressure they were under. Some
participants reected that by avoiding impulsive decisions
during dicult times, they could exercise agency and self-
control over their actions. This deliberate approach allowed
people mask to appease those around them. However, using
scripted social performance is “eortful” and “energy
draining”, as described by P5. Hence the paradox of cam-
ouaging for our participants was that while it made them
feel like they were tting in better in neurotypical society
which promoted independence in the short term, it often
made things more dicult in the longer term due to the
amount of eort involved and the risk of burn out. The lure
of adapting behaviour to be accepted by neurotypical peo-
ple was very strong even though this risked compromising
authentic identity, well-being, and independence eventually.
Building Bridges of Empowerment & Understanding
Participants emphasised the importance of educating wider
society about autism, dispelling misconceptions, and advo-
cating for autistic inclusion to increase autistic people’s
independence. Participants described how people would
often “jump to conclusions” [P9], expressing scepticism
about their professional capabilities if they had visible autis-
tic traits, as autism was stigmatised and assumed to preclude
career-based competence. The reaction to someone autistic
holding a responsible professional role was often surprising,
“You’re on the spectrum and you work on the [railway] sta-
tion? I was like, yeah. They went, what? Bloody hell!” [P12]
Many participants, including P12, reected on the societal
stereotypes or misconceptions about autistic people and
their capabilities, highlighting the need for greater aware-
ness and understanding.
Whenever, like, people [pause] know that you’re
autistic, they jump to conclusions. And they think
that you can’t do all this other stu, like- and at one
of my groups, one of the other support people were
like- um, she was- she was like, what, you’re an actual
teacher?…. And she couldn’t believe that I was an
actual teacher. I was like, yes I am, an actual teacher.
(…) Because they see the autistic side. [P9]
Societal expectations of autistic people are often unfairly
low, due to ableism, stigma, and discriminatory structural
processes (e.g. recruitment practices), which limits opportu-
nities for independence and self-condence.
Participants felt that autistic people were often denied
opportunities to become independent because of limitations
assumed to be intrinsically linked with autistic characteris-
tics rather than situationally specic.
I think a lot of autistic people in general can struggle a
lot because they’re almost not given the opportunity to
be independent. I think people are just very reluctant
to give autistic people their independence, because,
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Journal of Autism and Developmental Disorders
need for emotional self-suciency, and their need for mak-
ing life choices play a pivotal role in shaping the experience
of independence for autistic adults. This perspective con-
trasts with previous literature, which tends to present inde-
pendence from a functional lens (Baker et al., 2021; Hume
et al., 2014; Spriggs et al., 2017). While functional indepen-
dence is important, as evidenced by a previous study where
participants shared their experiences with moving out and
establishing their own living arrangements (Al Ansari et al.,
2024), ndings from this study suggest that independence
is not solely about practical abilities (Wise et al., 2020), but
also involves a complex interplay of psychological, emo-
tional, social and cognitive factors. Hence, discussions of
independence within the context of autism should not be
framed solely through the lens of self-suciency but should
consider the unique support needs and preferences of autis-
tic people.
Participants described a range of challenges that could get
in the way of independence (Theme 2). Noteworthy among
the ndings are the role of environmental and systemic bar-
riers such as societal norms and expectations, lack of early
learning opportunities, and societal reluctance to recognise
autistic capabilities in determining the well-being and inde-
pendence of autistic people. These ndings are in line with
previous studies, which suggest that societal reluctance
to recognize and accommodate the capabilities of autistic
people contributes signicantly to their marginalisation
(Botha, 2020; Crompton et al., 2020; Turnock et al., 2022)
leading to internalised ableism. This internalised ableism, as
highlighted by Botha et al., (2022), can arise from constant
exposure to societal attitudes that regard autism as a aw
rather than a dierence. This perception of being awed,
rather than dierent is echoed in the experiences of many
participants, who reported signicant challenges in navigat-
ing environments. These challenges included diculties
with their mental health and well-being (Black et al., 2024),
hindering their access to community resources (Mitter et al.,
2019; Zuckerman et al., 2018), personal relationships (Turn-
ock et al., 2022), and employment opportunities (Doyle et
al., 2022; Harmuth et al., 2018).
Previous denitions of independence from a functional
perspective (Al Ansari et al., 2024; Cribb et al., 2019;
Grove et al., 2023) fail to acknowledge the key role of men-
tal health our autistic participants described. Though par-
ticipants dened independence in a variety of ways, mental
health almost always played a signicant role in shaping the
experience and ability to achieve it. Participants considered
that their ability to perform daily tasks and engage in activi-
ties they enjoyed were aected by their mental health, in
line with previous literature (Hume et al., 2014; Lai et al.,
2019).
them to navigate adversity while preserving the aspects of
their lives that contributed to their overall well-being and
independence.
Overall, these themes and sub-themes provide a nuanced
and comprehensive understanding of the complex nature
of independence as experienced by autistic adults. They
highlight both the empowering and challenging dimensions
of this pursuit. Theme 1, Independence is “Not a one-size-
ts-all”, reects the participants’ views that independence
can be both a necessity and a choice, with many unseen and
personal dimensions shaping their experiences. Theme 2,
“Being autistic has its setbacks” in a neurotypical world,
illustrates the profound impact that mental health, trauma,
and the lack of accommodations for core autistic traits have
on their ability to achieve independence. Finally, Theme 3,
Finding ways of making it work, underscores the importance
of support systems, emphasising that achieving indepen-
dence is not always a solitary journey, but often involves
help from and collaboration with others. Together, these
themes capture the multifaceted reality of navigating inde-
pendence as an autistic people.
Discussion
This study presents the rst qualitative data on how autistic
people dene and experience their independence. Previous
research has typically examined independence from a func-
tional perspective (Al Ansari et al., 2024; Ghanouni et al.,
2021), taking neurotypical standards and norms as a starting
point. In this study, participants were given the freedom to
dene independence in their own terms, oering a broader
and more nuanced perspective. This approach represents a
signicant shift, as it has provided insights into the more
individualised understanding of independence, tailored to
the unique experiences of autistic adults. The ndings indi-
cated that the autistic adults’ lived experiences of indepen-
dence involved three main constituents: Independence is
“Not a one-size-ts-all” (Theme 1), “Being autistic has its
setbacks” in a neurotypical world (Theme 2) and Finding
ways of making it work (Theme 3).
Independence was seen by participants as a multi-faceted
concept, shaped by various factors such as context, cir-
cumstances, and personal choices (Theme 1). Participants’
narratives revealed an understanding of independence that
extends beyond mere functional aspects, encompassing
emotional, cognitive, social, and psychological domains. A
key insight from the study is the inclusion of subtle, unseen
dimensions, where independence is inuenced by the com-
plex interplay between participants’ internal readiness and
external limitations. These unseen dimensions, particularly
the desire for psychological independence such as their
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Journal of Autism and Developmental Disorders
counselling or support services. The most reported barriers
to accessing services were the limited number of autistic-
friendly healthcare providers, long waiting times for special-
ist assessments, and a lack of tailored mental health services
(D. Adams & Young, 2021). Additionally, many participants
noted a shortage of professionals trained to understand and
accommodate the sensory, communication, and social needs
of autistic people (D. Adams & Young, 2021). Participants
who did not receive adequate support from available ser-
vices often reported having more unmet healthcare needs.
This lack of support was felt to impact their independence
negatively in the long term. Moreover, many participants
described employing masking or camouaging techniques
to t into neurotypical society, often at the expense of their
authentic selves. There are signicant psychological costs
associated with masking (Evans et al., 2024), in line with
this, participants in the present study reported that mask-
ing adversely aected their mental health. Masking was
understood to hinder participants’ pursuit of independence
by limiting their ability to express their true selves and make
authentic choices. Our data are consistent with a view that
autistic people would benet from greater societal accep-
tance to reduce the pressure on autistic people to conform
(Khudiakova et al., 2024; Miller et al., 2021; Pearson &
Rose, 2021).
Participants’ accounts revealed the pervasive inuence
of negative societal stereotypes of autistic people (Botha,
2020; Botha et al., 2022a; Turnock et al., 2022), which often
led to feelings of lack of acceptance and understanding rein-
forcing the need for greater societal awareness and inclu-
sion. Autistic empowerment was identied as a signicant
factor in participants’ descriptions of their independence,
underscoring the importance of feeling capable and valued
in society. Moreover, it has been reected in participants’
narratives that their mental health could have beneted from
understanding their experiences through the neurodiversity
paradigm, rather than perceiving themselves as inherently
awed (Shaw et al., 2022). To address these misconceptions,
it is important that autistic people feel able to self-advocate
and empower themselves, and that society becomes better
educated about autism and removes barriers of misunder-
standing and prejudice that limit access to employment and
citizenship (Botha, 2020; Burke et al., 2024). Overall, the
interviews illustrated the nuanced relationship between
independence and support, highlighting the importance of
striking a balance aligned with everyone’s unique needs,
circumstances, strengths, capabilities, and aspirations.
Limitations
While qualitative research does not aim to produce gener-
alisable ndings (Braun & Clarke, 2019), it is important to
When prompted about barriers to independent function-
ing, participants frequently mentioned diculty managing
social situations, including initiating and sustaining interac-
tions, experiencing social anxiety, fear of being misunder-
stood, and struggles with interpreting social cues. However,
this traditional understanding of communication and inter-
action decits solely residing within autistic people has
been a subject of critique, such as through the conceptuali-
sation of the “double empathy problem” (Milton, 2012, p.
883; Milton et al., 2023, p. 78). Instead of framing autistic
social-communication dierences solely as decits within
the autistic individual, these challenges may also arise from
a lack of understanding and accommodation by neurotypical
people. Hence, the diculties in social interactions are bidi-
rectional (Crompton et al., 2020; Mitchell et al., 2021). Our
participants echoed this, explaining how being perceived as
dierent in a neurotypical society negatively aected their
well-being and independence. These ndings demonstrate
that the barriers to independence for autistic adults extend
beyond internal challenges and are deeply inuenced by
a lack of acceptance of core autistic traits, as is evident in
Theme 2. This may also be notable in the examples partici-
pants gave, which often highlighted barriers to participating
independently within social domains.
Participants highlighted the importance of promoting
acceptance, support, and accommodation of autism in over-
coming barriers to independence and well-being (Theme 3).
Many of the challenges participants described were closely
tied to barriers in social participation, such as diculties
forming and maintaining relationships, accessing commu-
nity spaces, and navigating social norms, as reected in
their quotes. This aligns with previous studies emphasising
the need for societal changes to facilitate the integration,
inclusiveness, and acceptance of autistic people (Kapp,
2018; McMaughan et al., 2024). However, participants also
highlighted other barriers to independence, such as sensory
challenges in public spaces and limited availability of tai-
lored services. Rather than being a pre-determined focus
of the study, the prominence of social participation barriers
seemed to reect how participants themselves conceptual-
ised independence and the restrictions they faced. Previ-
ous studies have also supported the notion that achieving
full independence, or being self-sucient with minimal (or
no) support is an impossible standard for anyone, includ-
ing autistic people (Brown, 2012; Pellicano & Heyworth,
2023). Several research studies have shown the eective-
ness of therapy or counselling in supporting autistic people
with their mental health (Chan & Doran, 2024; Cooper et
al., 2017), consistent with the ndings of this study. Par-
ticipants reported that therapy or counselling helped them
maintain emotional equilibrium and cope with crises. How-
ever, participants in the study also reported barriers to access
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Journal of Autism and Developmental Disorders
barriers to independence, such as scripting social interac-
tions in advance, camouaging autistic traits, and building
bridges of understanding with non-autistic people to t in.
These ndings emphasise the need to ensure that autistic
people are understood, supported, and included in society
and given opportunities to achieve their desired level of
independence without having to compromise their authentic
autistic identity, natural communication style, or well-being.
Supplementary Information The online version contains
supplementary material available at h t t p s : / / d o i . o r g / 1 0 . 1 0 0 7 / s 1 0 8 0 3 - 0
2 5 - 0 6 8 1 2 - 0.
Funding The authors acknowledge the nancial support from School
of Psychology at University of Birmingham for paying the partici-
pants.
Declarations
Conict of Interest All authors have no conicts of interest to declare.
Open Access This article is licensed under a Creative Commons
Attribution 4.0 International License, which permits use, sharing,
adaptation, distribution and reproduction in any medium or format,
as long as you give appropriate credit to the original author(s) and the
source, provide a link to the Creative Commons licence, and indicate
if changes were made. The images or other third party material in this
article are included in the article’s Creative Commons licence, unless
indicated otherwise in a credit line to the material. If material is not
included in the article’s Creative Commons licence and your intended
use is not permitted by statutory regulation or exceeds the permitted
use, you will need to obtain permission directly from the copyright
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Autism Spectrum Disorders, 83, 101761. h t t p s : / / d o i . o r g / 1 0 . 1 0 1 6
/ j . r a s d . 2 0 2 1 . 1 0 1 7 6 1
note the participants were not recruited randomly (invita-
tions were sent to an autistic research database and posted
via local charities). Therefore, the ndings may not fully
capture the specic contexts and experiences of the broader
autistic community (Johnson et al., 2020). Autistic people
vary signicantly in terms of their characteristics, needs,
and experiences (Wozniak et al., 2017), hence we need mul-
tiple studies in future research to capture a wide range of
perspectives from autistic adults. Participants reported that
if the interview schedule had been shared with them before
the interview, it would have helped them provide more
insightful answers as they would have had time to recall
incidents in advance (Kaplan-Kahn & Caplan, 2023).
In line with our research questions, participants were
not given a singular denition of independence as a start-
ing point. In line with previous theorising in the eld, over-
lapping constructs such as autonomy, self-determination,
and empowerment were considered by participants (Graber,
2017; Späth & Jongsma, 2020). Such conceptual uidity
allowed us to identify the sheer breadth of factors that our
participants associated with independence. Future studies,
however, may look to develop increased conceptual clarity
in understanding the independence of autistic people, the
independence of neurotypical people, and how they dier.
Although autistic co-researchers played an active role in
the later stages of the research (from data analysis onwards),
they were recruited too late to inuence the initial research
design and data collection. Earlier involvement of autistic
collaborators would have made the research more inclusive
and robust (Hobson et al., 2023; Kaplan-Kahn & Caplan,
2023; Stark et al., 2021). Although we focussed on our par-
ticipants’ denitions of independence, our research team
were likely inuenced unconsciously by dominant neuro-
normative cultural denitions of independence. Though the
research team included diverse perspectives, by denition,
understanding marginalised perspectives presents addi-
tional challenges.
Conclusions
This is the rst study to have focussed on how autistic
people conceptualise and experience independence, free
from neurotypical assumptions of what independence is.
The ndings of this study highlight how signicant inde-
pendence is to autistic adults and the value they attach to
being able to make choices and exert control. Furthermore,
this research sheds light on the challenges and obstacles
that autistic adults encounter in their eorts to achieve and
maintain independence, identifying areas for support that
they consider to be important. Notably, many participants
reected on eortful strategies they used to try to overcome
1 3
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