“Living Independently Means Everything to Me”: The Voice of Australian Autistic Adults

Abstract

Background:

Despite the desire of many autistic adults to live independently, recent studies suggest that only about one in six autistic adults do. This includes living alone, with a partner, or with friends. This is a rate that is lower than adults with other disabilities. Existing studies from other countries have explored the potential barriers to independent living, with very few exploring the actual experiences of autistic adults. To the best of our knowledge, there have been no published studies exploring the firsthand moving out experiences of autistic adults globally and none that have explored their independent living experiences in Australia.

Methods:

Autistic adults with independent living experience in Australia were invited to partake in an interview to understand their moving out and independent living experiences. Interviews were held virtually, audio recorded, and transcribed. Transcriptions were coded in NVivo and thematically analyzed.

Results:

A total of 11 autistic adults were interviewed (aged 21–50 years). Three key themes were derived from the interviews. Autistic adults perceived independent living as important to have their own space with added autonomy and control (Theme 1). However, autistic adults shared that the moving out process and independent living comes with many challenges, and currently supports are limited (Theme 2). Nine of the 11 participants were diagnosed as adults, and they shared the importance of diagnosis and how an earlier diagnosis may have influenced their choice of accommodation and living arrangements (Theme 3).

Conclusions:

Findings from this study reiterate the importance of independent living to autistic adults and shed light on the challenges of transitioning to independent living. It further adds to the growing literature about the importance of early diagnosis on later life choices. Better pathways toward adult diagnosis and the provision of supports for the moving out process would be useful to ease transition to independent living for autistic adults.

Community brief

Why is this an important issue?

Many autistic youth and adults say that they want to live on their own, with friends, or with a partner. However, many still live with their family. Most of the research in this area talks about what autistic people and their parents think might happen when they move out of home. Yet there is not much that has explored the experiences of autistic adults who have moved out already to live independently, and none within Australia. This is important, as we need to understand their experiences so we can make them better.

What was the purpose of this study?

The researchers wanted to understand the moving out and independent living experiences from autistic adults in Australia.

What did the researchers do?

A researcher conducted 11, one-on-one interviews with autistic adults living independently in Australia. These interviews were online or over the phone depending on what participants wanted, and ranged from ∼27 to 105 minutes. Autistic adults were asked questions about when they moved out and their current independent living experiences.

What were the results of the study?

We looked at what participants told us and created three ideas that described the independent living experiences of autistic adults in Australia. These ideas included how the control/choice/freedom/space are important, that some parts are hard, and that people may have made different living decisions if they were diagnosed at a younger age.

What do these findings add to what was already known?

These findings help show how important it is to the autistic community to live independently and that the challenges in Australia are similar to other countries. Our findings also suggest that if people realized that they were autistic earlier in their lives, they may have better understood themselves and followed living situations that better suited their needs.

What are potential weaknesses in the study?

This was quite a small group of autistic adults, where the majority identified as female and were highly educated.

How will these findings help autistic adults now or in the future?

By better understanding the moving out and independent living experiences of autistic adults in Australia, these findings can help identify areas of support (such as finding a good home and help with money). It also provides further support to improve the diagnostic processes for autistic adults, as diagnosis can help adults better understand themselves and find homes suited to them.

Introduction

In Australia and many other countries, moving out of the family home to live independent of any ongoing formal care is traditionally considered a marker of the transition to adult life. Enabling autistic people and their families to achieve what they want in relation to living arrangements is an area of unmet service and support needs and a priority area that has been identified by the Australian Autism Research Council.¹ Despite the desire of most autistic youth to have independence in their living arrangements, a majority still live at home with their family.^2–7 In Australia, an estimated 75% to 89% of autistic youth (aged 18–24 years) live with their parents compared with approximately half (55%) of the general youth population.^5,8 Even in studies that include older autistic adults, only about 20% are living independently.^9–11 The rate is significantly lower for people who experience intellectual disability, where less than 7% live independently.¹¹ This indicates the additional challenges experienced by autistic people with co-occurring intellectual disability—with some requiring two to one support.¹²

Independent living refers to the degree of choice and control that a person has over their life.¹³ While independent living does not mean that the disabled person has to complete every task on their own, it ensures that their goals and choices are enabled. Independent living can be facilitated by skills such as activities of daily living (e.g., self-care, meal preparation, time management, shopping, and health) and financial skills/budgeting.¹⁴ However, as supported by a recent scoping review, the autistic population experience significantly poorer outcomes around activities of daily living compared with non-autistic people.¹⁵ Furthermore, independent living often relies on employment.

While meaningful employment is a desire for many autistic people, the community experiences a range of barriers such as high unemployment rates, minimal benefits, short-term contracts, and being both underpaid and overqualified for their role.¹⁶ This is particularly relevant to the Australian context at present due to high inflation, as well as increased costs of accommodation, bills, and other essential living expenses.¹⁷ Although Australia does provide funding to support independent living by assisting with activities of daily living and home modifications for people with disability under the federally funded National Disability Insurance Scheme, this scheme does not directly support day-to-day living costs nor the cost of general housing items.¹⁸

Several studies have investigated the perceived challenges of transitioning to independent living as reported by autistic adults and their parents.^{3,4,6,7,19,20} The majority of autistic adults in these studies were living with family or caregivers, meaning that the information gathered pertained to their expectations for the future rather than their actual experiences. Nevertheless, these studies identified a range of perceived logistical challenges including financial constraints, planning and organizational difficulties, future-oriented thinking, and the need for extra time to process decisions and develop daily living skills.^3,4,6,7

Additional reported challenges included the way in which co-occurring mental health conditions such as anxiety and depression, which autistic people experience at a higher rate compared with non-autistic people, may limit their capacity to transition and cope with independent living.^3,4,21 Researchers need to better understand the experiences of autistic adults living independently as the combination of logistical challenges and increased risk of mental health concerns may contribute to autistic burnout when expectations outweigh abilities.²² This is an important consideration as burnout can lead to a regression across a wide range of skills required for independent living in addition to other health and quality-of-life risks.²²

However, a recent systematic review on autistic people moving homes highlighted how little research has captured the independent living experiences of autistic adults through qualitative methods, and even less directly from autistic adults themselves.²³ Common challenges associated with living independently included mental health (e.g., anxiety), daily living skills, and managing finances and employment.^7,24 Caregiver support was a critical enabler in supporting autistic adults to live independently, emphasizing a person-centered approach by considering their daily living skills, preferences, and interests, and supporting a gradual increase in independence.^7,25 Taking a different angle, Belgium researchers explored what independent living meant to two autistic adults.²⁶ The researchers interpreted that independent living meant that the autistic adults had self-determination in how they lived, they lived close to shops and family, and they had nearby social supports to help with stress and anxiety.

Emerging research has found an association between an autistic person being satisfied with their living situation and reporting high satisfaction with their life.²⁷ However, we know very little about what independent living actually means for autistic adults²⁶ and that there is a disconnect between the autistic and non-autistic perspective on adult markers of success.⁴ These markers of success differ between the perspectives of autistic people and their parents across domains such as post-secondary education, employment, and living situations for the future.²⁸ In fact, many autistic adults believe that they will be more independent, have different goals, and hold more positive views for the future compared with their parents' perspectives.²⁸ This disconnect emphasizes the significance of including autistic people as an active and equal voice in planning their future, as their voice has traditionally been excluded from autism research and differs from the perspectives of other stakeholders.^29–31

To the best of our knowledge, there has been minimal research on the actual experiences of autistic adults who are living independently, and none that has focused on the moving out process or the Australian context in particular. This is confirmed by a recent systematic review on autistic people and moving home.²³ The aim of this study, therefore, was to investigate what independent living means to autistic people and how autistic people experienced the process of moving from their family home to independent living. To achieve this aim, the study focused on the following research questions:

• What does independent living mean for autistic adults?

• What are the enablers and barriers for autistic adults in Australia to move out of the family home to live independently?

• What services and supports could help autistic adults in Australia to live independently?

Methods

To investigate the research questions above, a qualitative approach was undertaken using semi-structured interviews and reflexive thematic analysis.³² A qualitative approach was best suited to explore the research questions as it allowed for an in-depth look into the firsthand and personal experiences of autistic adults rather than being limited in scope by pre-existing response categories. Semi-structured interviewing allowed for flexibility to focus on issues meaningful to participants while maintaining a level of uniformity between participants.³³

Participants

This study invited Australian autistic adults with a formal diagnosis who had experienced living independently (defined as living alone, with roommates/friends, and/or with a partner) or intended to move out of home. A total of 11 autistic adults participated in semi-structured interviews. Nine of the 11 participants lived independently, whereas two had previous experiences of independent living but were living semi-independently. One of the participants (ID: 1) lived with a family friend who provided informal support as needed, and the other participant (ID: 7) lived between university accommodation and extended stays with their mother. A summary of self-reported demographic information is provided in Table 1.

Table 1.

Participant Demographic Information

ID	Age, years	Gender	Living situation	Age of diagnosis, years	Intellectual disability	Employment status	Highest education	Type of locality
1	28	Female	Friend/carer	27	No	Volunteer	Bachelors	Country town
2	38	Female	Child and roommate	38	No	Mother	High school	Country town
3	50	Female	Alone	47	No	Volunteer	Bachelors	Country town
4	35	Female	Partner	25	No	Full time	Postgraduate	Capital city
5	34	Female	Roommate	33	No	Part time	Bachelors	Capital city
6	37	Female	Alone	32	No	Casual	Postgraduate	Capital city
7	24	Nonbinary	University accommodation	15	Yes	Full time	Bachelors	Capital city
8	40	Male	Alone	28	No	Unemployed	Bachelors	Capital city
9	21	Female	Sibling	19	No	Full time	Bachelors	Capital city
10	26	Male	Partner	14	No	Full time	Bachelors	Capital city
11	49	Female	Alone	46	No	Part time	Vocational certificate	Regional city

Procedure

This study received ethics approval from the Human Research Ethics Committee of the University of Sydney (Protocol number: 2020/760). Participants were recruited online through Autism Spectrum Australia's (Aspect) social media, mailing lists, autism support networks, and word of mouth. Interested participants were provided with a participation information and consent form at the start of a pre-interview online survey that collected participant's demographic information and invited participants to provide their contact details to organize a time for the semi-structured interview.

Interviews

Participants engaged in a one-on-one semi-structured interview with the first author through either Zoom or over the phone depending on their communication preferences. The interviews ranged from 27 to 105 minutes. The interview included questions around what independent living meant to participants, how important it was to them, enablers and barriers based on their own experiences. Participants were also asked for suggestions as to possible supports to better enable autistic adults to move to independent living (see Supplementary Data for the full interview schedule). The audio recordings from each interview were transcribed automatically using Otter (https://otter.ai), with the first author manually editing each transcript to ensure their accuracy.

Analysis

Transcripts were analyzed using reflexive thematic analysis,³² following the six steps of data familiarization, generation of initial codes, searching for themes, reviewing themes, defining themes, and producing the report. This method allowed us to report the experiences, meaning and reality of the participants³² as analyzed and informed by the lived experience of an autistic researcher (second author), a parent of autistic person (third author), and the team's experience and training in public health, psychology, and education. Transcripts were imported into NVivo where they were initially coded by the first author. The research team met several times to discuss the emerging candidate themes while considering the research questions. Through a collaborative process, three themes were generated and defined.

Community involvement

This study reflected a co-produced model where both autistic and non-autistic researchers collaborated as equal partners³⁴ to explore the independent living experiences of autistic adults in Australia. The first author is a male, Australian, non-autistic, public health, postdoctoral researcher from a Middle Eastern refugee background who has worked in the space of autism for almost 2 years. The research design and methodology were guided with input from two autistic research assistants (acknowledged) and the third author, who is a mother to an autistic adult. Interviewing was carried out by the first author with feedback and training from the third author and the autistic research assistants about interviewing autistic participants. They also supported with the promotion of the study and recruitment of participants. The second author (a male, autistic, postdoctoral researcher) and the third author constantly met with the first author to discuss, analyze, and interpret the interview findings. All authors contributed to the literature review and write up of the article.

Results

Three key themes were generated from the interview data. Initially, participants shared that moving out of home to live independently was important to them and has allowed them to live their life with greater freedom and autonomy (Theme 1). However, participants informed us that they experienced challenges both during the moving out process and while living independently and had difficulty accessing the supports they felt they needed (Theme 2). The majority of participants (9 out of 11) were diagnosed as adults, and they reflected on the impact and importance of knowing they were autistic in terms of their decision-making, experiences, and supports received during the moving out process and while living independently (Theme 3).

Theme 1: “It's the most important thing in my life”

Participants spoke of the importance of independent living to their lives, reporting that it was “pretty high” (ID: 5) on the priority list and that “on a scale of one to ten, it's about a fifteen” (ID: 11). Participants noted that “autistic or not, people want to make their own decisions and do their own thing” (ID: 11). Participants linked living independently to greater autonomy, being able to “choose what I wanted to do … instead of what other people chose for me” (ID: 1) and being able to “do whatever you want … not having to ask for permission” (ID: 9). Participants shared that when living independently, they “felt more in control of my life” and able to “control my own world” (ID: 2). Being able to “manage my own living … create my own space and schedule a set of specific routines that I need to follow” (ID: 11) was important to participants with “the rewarding thing (about living independently) being able to make your own choices” (ID: 11).

Living independently presented an “element of fulfillment that comes from having your own space” (ID: 4) and a way for participants to “actually see where my limitations were … what could I actually do versus what had I never had the opportunity to test out and I wouldn't have known that had I not moved” (ID: 1). This was in contrast to living with parents where “my mother kind of ran my life for me … and I felt like I was an overgrown teenager really” (ID: 8).

Independent living also provided opportunities for solitude, “I really value that about having my own space. I can come home there's no one around I don't have to interact with people all the time” (ID: 3). They viewed their homes as a “sanctuary away from the world” (ID: 2) and a “safe little hiding hole from the rest of the world” (ID: 8), which provided “lots of alone time” (ID: 2), time and space that many autistic participants required and valued. Without this freedom, participants could be “a very different person in every single way when anybody else is in my space” (ID: 2). As a result, participants reported that they “do a lot better … when living independently” (ID: 5).

Theme 2: Challenges: “Literally every single aspect you can think of was a problem”

Despite the importance of independent living, the moving out process and the associated autonomy came with many challenges which our participants perceived was exacerbated for autistic people:

It's a tough area for people on the spectrum, it's been a tough area for me. Really, it's been a bigger battle than I thought it would be. I thought it'd be easy. Really, honestly, there's always something to worry about. (ID: 8)

Participants described being unsure about how to go about moving out of home. They had “no idea how you go about that - how you would find a suitable place with suitable people and the right level of help available” (ID: 1) or how to “look for flat mates” (ID: 7) or “share housing, I didn't really get how that worked” (ID: 8). Some participants sought support, but when they “tried to get support, there just was none, really” (ID: 2). Participants often did not know “what services are even out there?” (ID: 9) and questioned if resources existed at all, “does that exist? I've never looked, does it exist?” (ID: 5). Reflecting on their experience, one participant noted, “I think if someone sat me down and said ‘this is what it's going to be like’ that would have helped because I would have been able to formulate a response to what I was faced with” (ID: 11).

A number of participants shared that it does not make a “difference if you're autistic or not” (ID: 11) to have a strong desire to move out and that the associated challenges and supports are a “learning process that everyone goes through” (ID: 8) and no “different to any sort of 19–20 year olds would be looking for in moving out of home” (ID: 3). However, although the desires and challenges may not be visibly different, the experiences of mitigating and negotiating them were exacerbated for autistic people. One aspect emphasized in particular was difficulty living with others, “for an autistic person that can add even higher levels of challenge to finding other people that they can relate to” (ID: 3) and “I struggled a lot with sort of social anxiety around sharing a space with other people” (ID: 4).

Autistic participants also shared that moving out has “so many external factors that you cannot predict” (ID: 5). Participants specifically found “communication …very difficult” (ID: 6) and “admin that is necessary to continue living independently … tricky” (ID: 5). Participants gave examples of difficulty “dealing with a real estate agent” (ID: 3), logistical arrangements with removalists and utility providers as well as maintenance around the house, “the biggest struggles for me is you know, the dishwasher not working and we need to get that fixed … that involves like six phone calls or 12 emails” (ID: 4).

Participants also shared that “transport can be a problem” (ID: 1). Although participants “needed the car to do things like grocery shopping, because trying to take your groceries on the bus is not easy” (ID: 4), they had difficulties ranging from applying for a license, “changing your driver's license” (ID: 9) when moving interstate, to not being “confident to drive” (ID: 4) in major cities. One participant shared that “if I have a driver's license, I don't have to rely on people to drive me places or I can solve my own problems,” however, they shared that due to health problems including partial blindness, they were unable to “strive for it” (ID: 7).

Mental health and burnout impacted participants throughout the moving out and independent living processes, and this was often linked to anxiety that occurred as a result of having to “step out of our comfort zone” (ID: 6). For some, living independently meant that “stress and anxiety and depression went up” (ID: 1) with one participant being forced to return to the family home after their “health really crashed again” (ID: 3) as a result of mental health issues. The significance of mental health was highlighted by one participant reflecting on their moving out experience, “when I initially moved out … the biggest thing that I needed in hindsight was actually sort of support around mental health … and coping with the anxiety and just more generally” (ID: 4).

In particular, an emphasis was placed on burnout due to the complex nature of independent living and the added stressors of other commitments such as work, “it just gets very, very tiring when you have to work and you have to cook and you constantly have to think about all these different things” (ID: 9). A similar sentiment was shared by a second participant who said that they cannot pursue paid employment because “if you put all of your energy into independent living … [you] limit your opportunity to … get a job because everything is going into just trying to get the cleaning done and the cooking” (ID: 3). This was also shared by a participant who currently works full time, “having cleaners who come regularly is essential, otherwise, nothing in this house is ever going to get cleaned. I just don't have the energy for that” (ID: 4).

Most participants also spoke of financial challenges related to “rent being too damn high” (ID: 5) and emphasized that “to live independently, you have to have a job” (ID: 7). Participants felt that the cost of living was high, which impacted everyone, especially those with a disability, “the housing market sucks for people with a disability” (ID: 5). Most expressed a preference for living alone, but it was “just not financially … viable” (ID: 9), in reality, “the financial constraints meant I had to move in with four other people. And that ended up being a disaster” (ID: 5). The dream of living alone was also challenged as some people “can't run a home even just for one person and work” (ID: 3).

Some participants shared that they often relied on parent support to continue living independently, “I ended up needing to ask my parents for continuous like amount of money a month to be able to continue living” (ID: 5). Difficulty managing finances was also a challenge for participants who were “still learning how to use money properly and stuff” (ID: 7) and needed “someone to help with finances, because that's the one thing that continually change once you move out” (ID: 9).

In response to many of these challenges, some participants expressed that transitioning to independent living can be a gradual process. Before moving out, one participant “did some house sitting for three weeks” and viewed it as “I'm on my own now … let's see if I can do this” (ID: 3), which they saw as a valuable learning experience. Another participant described how learning to manage a household such as cooking and cleaning, “was a six-year project” (ID: 1). Others saw the value in a “cushion going to and from the new places” (ID: 5), in reference to living with family between moving homes. While many participants recognized that a “slow transition is helpful” (ID: 6), others went from “living with my parents straight to living almost completely independently,” which was “really, really anxiety provoking” and they wished they had moved into an “environment that was more supportive” (ID: 4).

Some participants also shared strategies to cope with the stressors of independent living. For example, one participant shared that “with home management … one of the coping things is being okay with it not being perfect” (ID: 3). Participants also spoke about the use of existing services such as home delivery for food and groceries, while another shared that they reduce their stressors by using direct debiting for the management of their bills, which enables them to not “even really look at the due date, I just know that as long as I've got enough money in my bank account, that's not going to be a problem” (ID: 8).

Theme 3: Earlier diagnosis would have impacted decisions and choice

Participants reflected on their moving out experiences and how they may have made different choices and had different outcomes had they been diagnosed as autistic earlier in life. In particular, one participant noted that they “would have benefited from a lot more preparation before I ever moved out” (ID: 4), and another shared that being diagnosed would have “definitely influenced the type of house” (ID: 5) they went into.

Before diagnosis, participants struggled with the moving out process, but they kept trying with no support, “I'm trying and trying and trying, it was just like, just hit the wall and hit the wall” (ID: 1). They had no knowledge of the available supports or what they needed, “I wasn't aware how much support I would have needed or perhaps may have needed at the time … so you go ahead and just try to figure these things out yourself” (ID: 8). But, following diagnosis “I am just sticking my hand up for every support out there” (ID: 11). They were able to “manage a lot better now because I understand what it is and I can do things to manage the sensory inputs and understand the social challenges and I can manage it a lot better” (ID: 3), and they no longer tried to “power through everything myself to the detriment of my wellbeing” (ID: 5). This was directly linked to choices around living arrangements. For example, one participant moved into a home situated on a main road with a noisy roommate and told us:

It was just constant noise everywhere. I didn't understand that about autism stuff at the time …. had I've known about such things, I wouldn't have moved into that place, that's for sure. And I may get a better place that was better suited for me. And I may have had a better time (ID: 8).

Another participant who moved away interstate from their family was diagnosed as autistic recently and reflected that they would not have moved so far if they had been diagnosed earlier:

If I had known I was autistic … I would want to live closer to my family. But I didn't know that when I decided to move down here … I probably still would have wanted to live independently in a place of my own but being closer to my family (ID: 3).

Participants shared that had they been diagnosed earlier, their decisions relating to independent living may have been different. They also mentioned that knowledge of their diagnosis of autism directly impacted on their living arrangements, choices, and the support they received. For example, one participant shared that, “in my current living situation; if you took my situation, minus the diagnosis, I probably wouldn't be able to get the help” (ID: 1).

Discussion

To the best of our knowledge, this is the first study to explore the moving out and independent living experiences of autistic adults in the Australian context. This research is of importance because a majority of the autistic community express a desire for independence in how they live their lives^3,4,7; however, their firsthand experiences have rarely been investigated.²³

This study contributed to our understanding by exploring what independent living means to autistic adults as part of a broader examination of their moving out and independent living experiences in the Australian context. Autistic adults voiced how important it was to them to be in control, to have freedom and space, to test their limits, and simply live how they wanted to live. This aligns with what independent living meant to two autistic adults in Belgium (self-determination), where they felt empowered, were able to pursue their passions, and make day-to-day decisions across their lives.²⁶ The importance of control and predictability of human (such as cohabitors and visitors) and nonhuman elements (such as sensory elements like lighting and auditory stimuli, as well as special arrangements) in the home environment was also suggested previously by autistic adults in Canada.³⁵ This is also consistent with why many autistic youth desire independence in their living situation, to become more in control of their lives, and gain responsibility as they transition into adulthood.^3,4,35

While living independently was important to our sample, autistic adults expressed a range of challenges from their experiences of moving out and living independently. These challenges focused on the need for support, particularly in relation to financial management and employment, and mental health concerns. Indeed, these challenges have been well documented in previous studies as to the possible barriers before a transition,^3,7 yet this study is one of few that highlights this from the perspective of autistic adults who were already living independently.²⁴

Despite having high levels of resource access (e.g., college degrees and employment), when speaking of their moving out experiences, our participants highlighted the difficulty of identifying formal supports and services. They spoke of the absence of autism-specific or autism-friendly services, supports and resources in navigating the moving out process, including administrative (communicating with utility suppliers, agents, etc.) and logistical (preparing and moving furniture) support as well as finding suitable accommodation/roommates. This lack of support for autistic adults may be felt even more strongly in other autistic populations with more limited resources and is demonstrated in previous transition into adulthood research.^4,7

Participants expressed how difficult it was to manage a home, communicate with relevant stakeholders (e.g., real estate agent), cook and clean, particularly when combined with other stressors such as finance/employment. This is not surprising as supports for daily living activities are often targeted toward autistic children rather than adolescents and adults.¹⁵ But this is a problem as we know independent living is important to many autistic people, and autistic adults need more support in this area to thrive in the living arrangement they desire. Our participants suggested a gradual and predictable increase in independence such as through having household responsibilities and gaining financial literacy as an effective way to ensure a successful transition to independent living. This gradual transition to allow for skill building has been supported in the previous literature as an enabler for a successful move to independent living.^4,25 While this is an important consideration for those autistic adults wanting to transition, there still exists the need for more research and support to help the autistic adults already living independently.

Our participants also expressed difficulty around management of finances, particularly in relation to employment, and relying on parents. While these difficulties align with previous research findings,^20,24 our study provided a deeper understanding by illustrating how these issues often resulted in autistic adults having to live with others (particularly when they did not know they were autistic) to share costs and the negative impact it had on their mental health. Furthermore, the resources required to engage with employment meant that some autistic adults were not able to complete any tasks at home, suggesting that maintaining the home would lead to burnout.²²

Mental health was also identified as a challenge for our participants as they reflected on their moving out process and independent living experiences. Similar to recent findings, the unpredictable nature of the moving out process increased mental health concerns such as anxiety.³⁵ Similarly, significant life changes have been shown to exacerbate mental health concerns such as stress and anxiety, a finding that was also reflected in our study.⁴ Our findings described how the change in lifestyle combined with other stressors such as employment/finances, daily living activities and a lack of available supports contributed to participants becoming at risk of, and likely experiencing burnout.²² In fact, one of our participants returned to their family home due to burnout.

Given the significant impact that autistic burnout can have on a person's quality of life, autistic adults and their supports (including family, friends, therapists, and support workers) must consider a proactive approach when exploring independent living as an option. This could include mapping their strengths and weaknesses in collaboration and having supports in place if the autistic person begins to regress in independent skills. Proactive social supports such as friends, neighbors, and psychologists were reported to be helpful by our sample, and in previous research in managing routine stress and anxiety.²⁶

As part of their independent living experiences, the majority of autistic participants reflected on their autism diagnosis as an adult, and that if they knew earlier, they may have made different decisions. This may have included moving closer to their family or into environments that better suited their support needs. This aligns with emerging autism research around the association between one's age of diagnosis and quality of life, with being diagnosed later in adulthood being associated with a poorer quality of life.³⁶ This could be partly explained by late diagnosed autistic adults living in situations that do not align with their support needs (e.g., exacerbating sensory triggers). Notably, learning that one is autistic can be a source of empowerment, allowing the autistic person to better understand themselves and adopt strategies for everyday life.^37,38 This reflects the voice of participants in our study where following their diagnosis, they better understood what their support needs were and how to manage them in their living situation.

Implications

Longitudinal studies have demonstrated that there is an increase in adults being diagnosed as autistic in recent years.³⁹ While research suggests that receiving a formal diagnosis in adulthood can be empowering and help with self-understanding,³⁶ adults seeking a diagnosis still experience a range of barriers and minimal post-diagnosis support.^37,40 Our study has extended this conversation by suggesting how independent living experiences can be shaped by when a person is diagnosed as autistic, meaning that if adults are diagnosed at a younger age they may in fact pursue independent living options better suited to their needs. Therefore, this study further demonstrates the need to improve the diagnostic processes and post-diagnosis support as it allows autistic adults to better understand themselves to plan their living situation for the future.^36,37

An additional implication relates to the training and support that autistic adults who desire independent living may benefit from to minimize possible challenges, such as building financial skills, daily living skills, and proactive supports to manage mental health.^15,24,26 In fact, parents are important stakeholders in preparing an autistic person for their transition to independent living, with discussions about the future and engaging in household chores in the family home being identified as key preparation activities.²⁰ Given the limited support available or utilized in the moving out process by autistic adults, as reported by our participants, a service or resource specifically designed to assist autistic adults and their families in navigating the moving out process may be beneficial in supporting members of the autistic community who pursue independent living.

Strengths and limitations

As a study on autistic experiences, this research was strengthened through its co-production nature, ensuring that autistic researchers were collaborators and authors, from research conception onward. Similarly, the independent living experiences of autistic adults were captured directly from autistic adults with this experience. Our participants also reflected diversity in when they were diagnosed as autistic, with some being within the last 12 months, while others were over 10 years ago. Future longitudinal research could consider exploring the gradual transition to independent living in a group of autistic adults, capturing their perspective before, during, and after a period of settling in. Similarly, researchers could compare the independent living experiences of late-diagnosed autistic adults to autistic adults who received their diagnosis as a child to better understand the age of diagnosis and quality-of-life association.

Despite the key contributions from our study, the findings should be interpreted with caution as there were limitations to the sample. The small sample size of 11 autistic participants limited the ability to explore differences between demographic groups such as people of different age groups or gender identities. The majority of participants identified as female were diagnosed in adulthood and held at least a bachelor's level qualification within an Australian context. This limits the generalizability of the results to other contexts with different service availabilities and to other individuals with varied socioeconomic and educational backgrounds who may have unique moving out experiences with similar or different challenges. All demographic data including disclosure of formal autism diagnosis and co-occurring intellectual disability were self-reported in the online pre-interview survey—the study did not employ any method to confirm these for participants.

Conclusions

In conclusion, this study is one of few that has captured the moving out and independent living experiences of autistic adults, and the first within the Australian context. Our findings further highlighted how significant independence is to autistic adults, the value of being able to make choices and have control in their daily lives. Furthermore, this research continued the discussion on the challenges that autistic adults experience when living independently in Australia, identifying further areas in need of support to allow autistic adults to move out and thrive in their lives. Notably, many of our autistic adults reflected on their late diagnosis, and that if they knew earlier, it may have changed their independent living choices. This finding emphasizes the need for better diagnostic processes and post-diagnosis support for adults to ensure people better understand themselves and can pursue living options that suit their needs.

Author's Note

The authors are aware of different preferences and reasoning regarding the use of person-first (e.g., person with autism) versus identity-first (e.g., autistic person) language. The authors have chosen to write this article using identity-first language, as this is the preference of most autistic people, including those on the research team.^41,42

Authorship Confirmation Statement

M.A.A.: Conceptualization, investigation, methodology, formal analysis, writing—original draft and review/editing, data analysis, visualization, project administration. C.E.: Formal analysis, writing—original draft and review/editing. V.G.: Conceptualization, methodology, writing—review and editing, supervision.

Author Disclosure Statement

There are no conflicts of interest to disclose.

Funding Information

The authors acknowledge the financial support of Autism Spectrum Australia (Aspect).