Autistic People and Moving Home: A Systematic Review

Abstract

Background:

While many studies have examined where and with whom autistic people live, very few have looked at autistic people's experience of moving home. Choosing where to live, and being able to move residence, could be important for autonomy, and we therefore undertook a systematic review to identify studies about autistic adults' experience of moving home.

Methods:

We entered search terms relevant to autism and moving home into six databases and Google Scholar. After screening the titles and abstracts, we identified a final set of articles and screened the full text. We then checked the reference lists for potentially relevant articles; then, we conducted a search for articles that cited our final set of articles. Three raters assessed each included article for methodological quality.

Results:

The search strategy identified a total of 311 articles (initial search, ancestry searching, articles from other sources). After deduplication, we screened a total of 165 articles for eligibility. A final set of seven articles was identified. Our narrative synthesis of the articles suggests that both autistic people and the relatives of autistic people think living independently is a source of positive personal development. However, autistic people reported that poor employment prospects impacted on their financial independence and hence independent living. Parents highlighted concerns about their offspring's personal care, safety, and the difficulty of navigating the housing system for those autistic people with co-occurring intellectual disability.

Conclusions:

Taken together, our review suggests that autistic people and those who care for them have a positive view of independent living and are aware of the barriers to achieving this. Our review highlights a gap in the understanding of autistic adults' experience of moving home. We briefly describe our ongoing research project [the “Moving (as an) Autistic Person” project] exploring autistic people's experiences of moving house.

Community brief

Why is this topic important?

Many research studies find that autistic people do not live independently—many autistic people live with their parents or in sheltered accommodation. As our knowledge about autistic people, and the diversity of their life experiences, increases, it is important to investigate a range of real-life transitions. So far, the transition to independent living has not been reviewed (specifically, the process of moving from one living place to another).

What is the purpose of this article?

We reviewed published studies to try and find all the available studies that may have looked at the process of moving home for autistic people.

What did the authors do?

We designed a search method to find all the articles that were relevant to this question. We searched six academic databases and used Google Scholar.

What did you find about this topic?

We found that there were no studies which looked at the specific question of what autistic people experience when they move home. However, we did find some studies which looked at the benefits of living independently (with reports from autistic people and from the parents of autistic people). We also found one study which looked at the choices autistic people have in where, and with whom, they live.

What do the authors recommend?

Based on the included studies, it does seem that autistic people may benefit from living independently. However, we do note that the issue of independent living cannot be examined without consideration of other factors, such as employment. Also, it is not universally the case that all autistic adults prefer, or will benefit from, living independently.

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

We aim to use the findings of this review, alongside our ongoing mixed-methods study of autistic people's experiences, to design a tailored co-produced resource to help autistic people plan for moving home.

Introduction

Autistic people often experience difficulties with attaining traditional markers of independence, such as employment^1,2 or independent living.*^,3,4 Early accounts reported very low levels of independent living for autistic people.^†^,5–7 In these early studies, almost all autistic people lived in their parental home; for example, Gillberg and Steffenburg reported that only 1 of the 23 participants in their “infantile autism” group (aged 16–23 years at follow-up) lived independently (however, this finding may not be surprising, given the age range).⁶ Rates of co-occurring intellectual impairment or learning disability were higher in these early samples than in current research studies, suggesting that older findings may not generalize to autistic people today.

More recent studies have reported a somewhat improved picture, yet independence—according to traditional indicators—is still low. For instance, Engström et al., in a study of 16 autistic adults aged 23–46 years, found that 9 lived in their own home, although often requiring high levels of support such as financial assistance and help with daily living activities.⁸ This proportion is broadly consistent with other follow-up studies.^1,3,9,10 Farley et al. reported that 17% of their sample (n = 41; mean age 32.5 years) lived independently; three participants had purchased their own home, two lived independently with parental support, and two lived in an independent apartment at the family home.¹¹

However, a subsequent study with the same cohort found that rates of independence had decreased.⁴ This was likely due to the inclusion of 64 additional participants with significantly lower IQ who did not meet the Diagnostic and Statistical Manual of Mental Disorders (DSM)-III criteria for the 2009 study but were thought to meet the DSM-IV criteria for the follow-up study.⁴ This latter finding is interesting, as higher IQ has often been implicated as a necessary but not sufficient criterion for a “good” outcome.^1–4 Farley et al. did highlight the importance of the individual's context—many of the individuals in their study were members of a church organization, which is very inclusive of those with intellectual disability (ID).¹¹ Hence, environmental supports may scaffold independent living.

While many studies have examined the status of autistic people's living conditions (e.g., whether they live at home or independently¹²), very few studies have examined the process of moving home for autistic people. By “moving home,” we mean any transition from one place of residence to another (e.g., moving from a parental home to independent living, moving from independent living back to a parental home, or any transition from one independent living place to another). In terms of the benefits (and problems) of independent living, Krauss et al. collected the perspectives of 133 parents of autistic adults (mean age 31.9 years), 63% of whom had moved from the parental home. Parents were, overall, positive about this transition, with learning new skills and having a better social life/more friends as two of the most common benefits discussed.¹³ These results are consistent with reports from autistic people, namely that living independently is desired and positive in terms of autonomy and shaping one's life.^14,15

Therefore, we decided to undertake a systematic review of this research area. Our primary question was “what are the experiences of autistic people when moving home?” We wanted to review any quantitative or qualitative study that reported on autistic adults' experience of moving home. It is important to note, however, that the phenomenon of an individual leaving the parental home is relatively recent (e.g., it was typical historically for individuals to reside with their parents until marriage in the United States¹⁶). Indeed, it has been argued that shared apartments, and other collective accommodation arrangements, are due specifically to economic and cultural shifts in Western societies.¹⁷ Hence, this review takes a normative view of moving home transitions and independent living as is typical of most Western societies.

Methods

Protocol registration

The study protocol for this review was part of three co-authors' MSc research projects (L.C., E.K., R.P.). The current work grew out of background literature review for a qualitative study, and hence was not preregistered; the search protocol is available from the authors upon request. A completed PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist can be found in the Supplementary Material S3.

Eligibility criteria

Given the predicted scarcity of research on this topic, we opted to be as inclusive of potentially relevant empirical literature as possible. Thus, we included all studies that were peer-reviewed, where a full-text article was available. A study was eligible for inclusion if it contained data about autistic people's experiences of moving home (including from parental report); however, we also broadened this out to other residential transitions (e.g., moving to university). We also included any studies that discussed the housing needs of autistic people and factors that may influence their experience of moving home and subsequent quality of life.

Information sources

We selected six databases to search, so that we would optimize finding as many relevant articles as possible: Allied and Complementary Medicine Database (AMED), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Medline, PubMed, and PsycInfo. Google Scholar was also used to check for articles not brought up in databases. We did not restrict the date range on any searches. The initial searches were conducted between June 3, 2021, and June 7, 2021; ancestry and forward searches were carried out on October 13, 2021.

Search

L.C., E.K., and R.P. conducted the initial searches. We used the following search terms: “Autis*,” “ASD,” “neurotypical,” “community home,” “independent living,” “moving ho*,” “quality of life,” “adult*.” The use of the asterisk allows for truncating words such that all relevant words are also searched. Terms without truncation were searched using the subject headings in each database, where applicable (e.g., “ASD” is a MeSH term in Medline and also searches for “Asperger's syndrome” and “autistic disorder”). The Supplementary Material S1 shows an example of a complete database search for PsycInfo.

Next, D.M. and V.M. searched the reference lists of included articles to identify potentially relevant articles. Then, for each full-text article, we carried out a forward search (checks carried out on October 13, 2021). This involved checking the titles and abstracts of all articles that had cited the included full-text articles. Finally, we included any published articles, known to the authors, which had been published since the searches were conducted (to ensure that we had maximized coverage of the search strategy; see Fig. 1 for a PRISMA diagram of this process).

FIG. 1.

PRISMA diagram outlining the search process. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Data collection process

The two first co-authors (D.M. and V.M.) designed a data capture form (see the Data Items section) to extract relevant data for the review, from included studies. The two authors then each independently extracted data from 50% of the studies. L.C. and E.K. checked the accuracy of the data capture forms; one discrepant finding was identified and discussed until consensus was reached.

Data items

The data capture form included the following elements: demographics of the sample (sample size, mean age of the sample, gender, ID status, living status, ethnicity, country where the study took place), study design (quantitative or qualitative), data collection method (survey, observation, interview, focus group; note, if multiple methods were used, we included data on all methods, and whether the data were self-report, based on informant-report or both), and relevant findings.

Risk of bias within studies

We opted to use the Quality Assessment with Diverse Studies (QuADS)¹⁸ because the QuADS is suitable for assessing both quantitative and qualitative study designs. The QuADS was developed from the Quality Assessment Tool for Studies with Diverse Designs (QATSDD).¹⁹ During development, the QuADS was rated as having good face and content validity by a panel of expert systematic reviewers and good inter-rater reliability.¹⁸ The 13 items of this tool are rated on a scale of 0–3, and therefore, scores can range from 0 to 39, with lower scores indicating lower quality. D.M. and V.M. rated each of the included studies (N = 4 and N = 3, respectively) using the QuADS; R.P. rated all the included studies to establish reliability.

Synthesis of results

Due to the expected sparse literature, we thought it inappropriate to summarize the data quantitatively (i.e., with a meta-analysis) and opted for a narrative synthesis. D.M. and V.M. independently interpreted the data and produced independent narrative syntheses. Both authors then jointly agreed on interpretation of the findings. Finally, all authors were involved in the final interpretation of the data and writing the narrative synthesis.

Results

Study selection

We identified an initial sample of 171 articles via database searches, 73 of which were duplicates and we subsequently removed. We identified an additional 67 articles from Google Scholar and from the authors' knowledge of the topic. Thus, after deduplication, we screened the titles and abstracts of 165 articles for relevance for this review. We subsequently completed full-text screening for 57 articles. A total of seven articles are included in this review, including one mixed method, one quantitative, and five qualitative articles.

More information on the selection process and reasons for exclusion can be found in Figure 1. Finally, we carried out ancestry searching (checking the reference lists of the included articles). From this, we identified 55 potentially relevant articles (reduced to 23 after deduplication); however, no articles were included. We also screened a total of five reports (compiled by charities or other organizations), but we did not include them as they were not peer-reviewed. The interested reader is referred to the Supplementary Material S2 for citations of these reports.

The 7 articles included a combined sample of 6985 participants, including 165 parents of autistic adults, 7 parents of adults with other additional needs, and 6813 adults with additional needs (35 with a definite autism diagnosis, but for some samples, the data on autistic status were not clear). Table 1 provides the extracted study details for each included article. Four studies were conducted in North America (one in Canada), two in the United Kingdom, and one was carried out in Belgium. Of the North American studies, one of these studies used interview and survey data (collected in 1998–1999) as part of a longitudinal study; the sample comprised 133 autistic adults and parents and this study focused explicitly on residential experiences of autistic people.¹³ Another study directly examining independent living collected data from 13 autistic people and 6 parents.²⁰

Table 1.

Extracted Study Details from the Included Articles

	Krauss 2005¹³	Attfield 2009²²	Stancliffe 2011²¹	Grey 2015^23, ^a	Sosnowy 2018¹⁵	Nguyen Lan 2021¹⁴	Ghanouni 2021²⁰
Sample size	133	1 Parent of autistic person	N = 6778 (mixed sample, with N of autistic participants not clearly identified)	2 Families (2 autistic adults, 2 parents)	20 Autistic people, 21 parents of autistic people (4 parent–child dyads)	2	13 Autistic adults, 6 parents of autistic adults
Mean age, years^b	Autistic people 31.9 years Mothers 61.1 years	22 years	45.7 years (age not provided for autistic subsample)	Autistic participants aged 18 and 21 years Parents aged 47 and 65 years	Autistic people aged 18–29 years, parents of autistic people of the same age (mean age of parents not reported)	32 and 28 years	Autistic adults 40 years (range 27–53 years) Offspring of parent dyads 29.8 years (range 25–36 years)
Gender	32% Female	Male	44% Female	50% Female (1 autistic person, 1 parent)	6 Female, 11 male, 1 other gender identity	Male	1 Male participant (based on parent report)
ID status	Not reported (around 23% nonverbal)	Severe learning disability, nonverbal	Mild/no ID 2619; moderate ID 1664; severe ID 1027; profound ID 1266	100% ID			3 with LD (self-report); 1 with LD (parent report)
Previous living status		At home		At home with parents		Both lived in parental home (P1 moved out 3 years ago, P2 1 year ago)
Current living status	63% Resided outside the home^c	At home (placement breakdown)	Nursing facility 78; institution 1692; group home 2500; host/foster family 684; apartment (agency owned) 539; own home 1223	At home with parents but having placed adult son/daughter's name on local government and housing association waiting lists	Of autistic people: independent N = 5, with parent(s) N = 12, other N = 1	Housing projects which follow an “inclusive residential model”	7 (53.84%) Participants lived on their own, 4 (30.79%) lived with other adults independently, and 2 (15.37%) lived with their parents. 3 Parents report: their adult children live in group homes, one that their adult child lives with other adults with ASD independently and 2 that their child lives at home with parents
Ethnicity				White	Of autistic people: 16 White, 1 Black/African American, 1 Asian
Country	USA	UK	USA	UK	USA	Belgium	Canada
Quantitative or qualitative	Mixed	Qualitative	Quantitative	Qualitative	Mixed	Case study	Qualitative
Data collection method	Survey	Author wrote from own perspective	Single item about choice of residence and a single item about choice about whom one lives with	Face-to-face semi-structured interviews	Interview (in-person, telephone, or email)Demographic survey (completed by 16 parents and 18 autistic people)	Interview (between researcher, Px, project coordinator, and a coach), followed by a 2 hour “walk and talk” interviewAlso included drawings from the Px, photos taken by the researcher, information from the residential project	In-depth semi-structured interviews
Informant or self-report	Informant (maternal report)	Informant (parent report)	Both	Informant (parental report)	Both	Self-report and field notes from the researcher	Both

This study was of nine families, but only included two autistic participants (demographic data reported separately).

Unless indicated otherwise, mean age refers to the mean age of the autistic participants.

Hence, only data from these individuals are included in the synthesis.

ASD, autism spectrum disorder; ID, intellectual disability; LD, learning disability.

A large study utilizing state-wide data (collected between 2006 and 2008) with a sample of 6778 adults with developmental disabilities (DD) investigated the exercise of choice in different DD populations.²¹ Finally, a study about outcomes more broadly recruited 21 autistic people and 21 parents of autistic people.¹⁵ (Neither qualitative study reported the dates of the data collection period.) Both the U.K. studies were qualitative. One study was a personal account of a parent's experiences of helping their autistic child transition from child services into adult provision.²² The second study examined the process of finding out of home care for a child with ID; the sample included two families with autistic children (out of nine families in total).²³ The final study was a qualitative exploration of the impact of a housing project on the independent living of two autistic men.¹⁴

Quality assessment

One article scored below 12, five articles scored between 13 and 23, and one scored above 26 on the QuADS. The average score was 24.4 (standard deviation = 7.3), with a range from 9 to 32. A two-way mixed-effect intraclass correlation (ICC) was calculated for each study to estimate inter-rater reliability; ICCs ranged from 0.54 to 0.94. Although there are no established cutoffs for ICC values, a value of 0.5 has been recommended as a minimum value for moderate reliability.²⁴ Hence, our quality assessment showed moderate to excellent inter-rater reliability.

Results of individual studies

Each of the seven included studies is described below. First, we describe studies that include reports from autistic adults, and then, studies that include reports from autistic adults and relatives of autistic adults. Finally, we describe the studies that gathered proxy-report only.

Nguyen et al. interviewed two autistic adults (both males, aged 32 and 28 years) who had made the decision to leave the family home and had moved to an independent living setting within an “inclusive residential model”. This model, operating in Belgium, houses individuals with a range of conditions in apartments. There are no formal support staff; instead, volunteers and “good neighbors” live in the same apartment building and provide support and social interaction. The participants explained the meaning of independent living as self-determination (motivation to have space and autonomy), proximity (to family, amenities, etc.), and social contact (to assist with difficulties)—not necessarily living alone.

The participants highlighted the need for support with physical (e.g., moving possessions) and social (e.g., dealing with neighbors) aspects of independent living.¹⁴ Self-determination was a significant theme for both participants; this desire to live independently was one of the reasons both men left their parents' homes; one participant said, “I want to live alone, to have my own space, and like independence myself” (p.15).

Ghanouni et al. interviewed 13 autistic adults (aged between 27 and 53 years; 7 lived alone, 4 lived independently with other adults, and the remainder lived with parents) and 6 parents (aged between 46 and 63 years) of autistic adults (1 of whom had ID, 1 had attention-deficit/hyperactivity disorder, and the remainder had some other mental health condition). It was not clear from the study who made the decision to move home for those who lived independently. The findings identified several challenges to independent living for autistic individuals.

Factors discussed included psychophysical stability (i.e., autism characteristics and attendant challenges, such as sensory overstimulation, and medical conditions) and ability to carry out daily living tasks, as well as financial issues (such as being underemployed, and not paid well, or not being eligible for disability funding due to having a high IQ, or financial management problems such as managing personal finances). Additionally, access to integrated community living settings (e.g., living independently in the community, rather than in segregated or sheltered housing) was reported to be central to autistic adults' independence. However, the unique needs of some autistic people may require alternative accommodation (e.g., living with family or living in assisted living facilities).²⁰

Sosnowy et al. interviewed 20 autistic adults (aged between 18 and 29 years) and 21 parents of autistic adults (including 4 parent–offspring dyads). For those autistic adults living independently, it was not clear from the study who made that decision. Autistic adults reported that attaining “typical markers of … adult status” (p.33) was important. Living independently was seen to be important because the autistic person could have more control over their time and have a place of their own. Overall, both parents and autistic adults were positive about independent living; however, there were some families in which opinions and desires differed. In one case, a parent highlighted an interesting tension. They reported that their autistic child knew that they could live independently but would choose to remain living with the parents.

However, the parent thought that “that's not what's best for you.” This might suggest a potential area of conflict between some autistic people's preferences and their parents' beliefs. Safe and suitable placement was a priority from a parental perspective. There was recognition of the need for the autistic adult's involvement in placement decisions. Moreover, parents thought that a long transition period was essential to help the autistic person gradually take on the responsibilities of living independently. Barriers to independent living, including lack of employment and financial dependence, were identified.¹⁵

Stancliffe et al. surveyed 6778 individuals with learning disabilities and included those with an autism diagnosis in the sample (mean age of the total sample was 45.7 years; n for the autistic subsample was not reported). All participants lived away from their parental/family home. In this study, a total of 3617 participants completed the two items about their living circumstances, and for the remaining participants, the items were completed by proxies.

Autistic people were more likely to have someone else choose the location of their living place than those in the study without an autism diagnosis; of the autistic participants, 66.2% had someone else choose their living circumstances, whereas, for example, 53.5% of participants with a psychiatric diagnosis had someone choose their living circumstances.^‡ Someone else was more likely to choose who the autistic participant lived with (8.0%), compared with the participant choosing who to live with independently (4.6%). However, autistic diagnosis did not predict either of these factors (where and with whom) in regression models when controlling for factors, such as location, age, gender, and level of ID.²¹

Krauss et al. examined parental perspectives on their autistic adult offspring's experiences (who were of mean age 32 years). The article does not report whether the autistic person or the parent(s) decided on the move out of the family home, but the authors describe around 65% of the sample as either nonverbal or minimally verbal. Based on data from 133 parents (mean age of 61 years), 63% of the 133 autistic participants lived away from their family home, in settings such as residential programs (73.3%), and semi-dependent living (17.4%).

Two of the participants were living completely independently. Perceived benefits of moving away from the family home included: learning new skills (endorsed by 54.7%), access to better services (43%), improved social life (18.6%), and access to an age-appropriate lifestyle (11.6%). Perceived challenges associated with moving away from the family home included: concerns about safety (12.8%), the autistic adult's ability to maintain personal grooming (11.6%), reduced family integration (7%), and loneliness (2.3%). Unique concerns regarding residential placements were also identified and included concerns about staff training (20.9%) and quality of care (18.6%).¹³

Grey et al. interviewed two parents of two autistic adults with additional ID (aged 18 and 21 years). In both cases, the parents were seeking alternative, out-of-home, accommodation for their autistic offspring. Parents reported concerns over their own decreasing ability to cope (e.g., due to the time commitment, increased physical size and weight, or increasing physical health and/or behavioral difficulties), a desire for a life outside of their caring role (e.g., to fulfill relationships with other family members), as well as a desire for independence for their adult offspring; these were the main motivations for finding living placements outside the family home. However, despite their motivations, several challenges and barriers were revealed, and the process was described as “the maze of the housing system” (e.g., a single point of access, such as Social Services, coupled with a lack of clear information). The authors concluded that there is a need for support, increased information, and guidance during this process, as well as an urgent need for more appropriate and tailored placements.²³

Attfield discussed a parental perspective on an autistic adult (with a severe learning disability, aged 22 years) moving away from their family home into a residential setting. Attfield described how transition planning should have started at 14 years but did not actually commence until the child was 18 years. Several barriers and concerns were identified, including lack of funding for appropriate placement and lack of consideration of parental viewpoint by social services. The process of moving away from the family home for the autistic person required a battle from the parents and resulted in several placement breakdowns.²²

Narrative synthesis of findings

The results of the included studies demonstrated that many autistic individuals, and their parents, desire independent living as an option^13–15; however, all the studies included in this report highlight important considerations regarding transitions to independent living. For example, autistic people and the parents of autistic people think that independent living is good for personal development and autonomy,^13,15 but concerns around safety and managing day-to-day require consideration.^13,15,20

Other people are likely to be involved in decisions around where and with whom an autistic person will live, particularly if these individuals have an additional learning disability.^21,23 In fact, it was almost twice as likely that someone else will make the decision about where an autistic person will live, compared with the autistic person themselves.²¹ Similar patterns were shown when deciding who an autistic person might live with.²¹ It is unclear how far this study²¹ represents decision-making in other samples; the other studies in this review tended not to focus on these two aspects of choosing a residence (i.e., where and with whom).

Motivations for and benefits of independent living were similar between autistic adults and their parents and included greater independence, ability to make decisions for oneself and development of skills and social life.^13,14,23 However, four studies also identified consistent concerns and challenges including the essential need for appropriate support (including social, financial, and daily living) and suitable environments to facilitate independent living.^14,15,20,22 Parent reports expressed worries about their own ability to care for their adult offspring, and the autistic adult's ability to navigate finding a place to live.²³

Several concerns and barriers to independent living were reported by autistic adults and their parents, including psychophysical functioning and availability of appropriate living environments.^20,23 Autistic adults highlighted the difficulty of finding suitable living placements due to lack of employment and financial independence²⁰; this was not explicitly discussed by parents. In contrast, parents highlighted that when transitions to independent living placements occur, they are often long, poorly guided, and challenging, and placements can breakdown.^22,23

The needs and preferences of both autistic individuals and their parents need to be considered to ensure sustainable living arrangements.¹⁵ This balance of needs ought to respect the autonomy of autistic people, but it may be that some autistic people need—or want—more parental involvement, and indeed, parents are trusted advisors to many autistic people.^§ This balance of opinions likely changes over the life span; younger autistic people moving for the first time may need more support from parents when finding sustainable living arrangements, but accumulated experience may lessen this need.

Discussion

We sought to review the literature to identify studies that had explored the experiences of autistic people when moving home. While we looked for research relevant to any type of home move—including from one residential placement to another or from one independent home to another—the seven articles we identified focused almost exclusively on moving from the parental home to another setting.

Overall, we found a generally positive attitude and motivation toward independent living (with, or without some support) from autistic adults and their parents. Independent living was perceived to be associated with independence, autonomy, and managing daily living tasks.^13–15,23 The studies included in this review are consistent with other studies examining similar constructs. For example, in a longitudinal study of 11,500 adolescents (with a range of learning disabilities), autonomy, self-realization, and psychological empowerment at wave 1 (based on parent report, with participants aged 13–16 years) predicted independent living at wave 5 (∼8 years later).²⁵

Indeed, the study by Nguyen et al. reported that living independently with support was a positive opportunity for the two autistic individuals to develop their skills.¹⁴ This positive view of independent living is in striking contrast with the low levels of independent living typically reported for autistic people.^2,4,12,26 This raises questions about what can be done to support autistic people to both move and settle in an independent living situation.

Despite these optimistic reports, many concerns and barriers were reported in the studies in this review. Concerns arose about independence with personal care, family integration, and loneliness, which are consistent with the previous literature. Several studies have found that daily living skills (which are likely central to independent living²⁷) trajectories for autistic adults increased into early adulthood²⁷ but may decrease into middle adulthood.²⁸ For those autistic individuals with co-occurring ID, parents reported that navigating the housing system was a challenge and called for more support. Even for autistic adults without ID, co-occurring conditions such as anxiety may make the transition to independence more difficult, and executive functioning difficulties may make planning and organizing a challenge.²⁹ However, intervening to help alleviate these difficulties, or provide supports, will likely help autistic adults move to more independent living circumstances.²³

It is vital to note, as reported by autistic people themselves,¹⁵ that there are other issues (such as difficulty gaining and maintaining employment), which can be barriers to living independently. A recent review by Chen et al. suggested that—while autism characteristics are associated with employment outcomes—employers' attitudes, access to support services, and incentives are also vital for successful employment.³⁰ Hence, it is likely that the difficulties with moving to independent living reported by autistic people and their relatives reflect a complex mix of person-level, community-level, societal, and policy-level issues.³¹

Although the combined sample size from all the studies is large (6985 participants), this was mainly driven by one very large, state-wide survey in America.²¹ Focusing on the remaining studies, the majority of the participants are the parents of autistic adults,^{13,15,20,22,23} or autistic adults without an ID or learning disability.^13–15,20 Therefore, it is likely that the findings of this review do not include the experiences of a large portion of the autism spectrum, namely those with more complex needs or issues with cognitive ability. Where these individuals are included, it is through proxy respondents. This is partly explained by the relatively novel research question. But it does strongly point to a need to further this research area by making more systematic attempts to recruit diverse samples of autistic adults to fully explore the issues around moving home, independent living, and indeed, whether this is a desirable outcome for all autistic people (as will be discussed below).

Furthermore, these studies have not explored autistic adults' experiences of moving after their original move from their family home, and in settings outside of residential or supported living. It is possible that characteristics associated with autism, such as a preference for sameness, possible executive dysfunction, and reduced social support, may be particularly pertinent when moving home and may impact the subjective experience of this important process, subsequently affecting the quality of life. Indeed, this point is consistent with the concerns of autistic people (and their relatives) about moving home; these issues may largely be minimized with appropriate systems and supports in place. Gathering information about these experiences from autistic adults is an essential next step to ensure that strengths are identified and that needs are met via appropriate support.

One significant implication of our review is that many autistic people live with their parents, and as these autistic people age, their parents are aging also. This could pose a problem for autistic people when their parents become too elderly to provide care, and/or pass away; they may struggle with the possibility of enforced independence in multiple domains of life, including those discussed above. Herrema et al. reported that, from a sample of 120 relatives of autistic adults, 21% of parents endorsed “where they will live” as their most pressing concern for the future. This was ranked third overall, after “whether they will be happy” and “who will look after/care for them.”³² In the same study, the authors also reported that 36% of respondents did not know who would care for their autistic relative in the future.³²

Rodgers et al. also reported that living circumstances were a source of worry for autistic adults. Specifically, they describe how autistic adults worried about a change in living circumstances, as well as maintaining a household (e.g., not being able to adequately maintain a property) and the financial worries associated with living independently.³³ In addition to moves from the family home, many autistic people who live independently may find the process of moving home as their circumstances change (e.g., due to work, relationship, or other changes) particularly challenging. Thus, it is a pressing concern to understand the experiences of autistic people moving house, be it the transition to independent living or the move between supported or independent accommodation.

However, this issue cannot be neatly disentangled from other factors that likely underpin independent living. For example, unless the autistic person is in a favorable financial position, employment is likely needed to afford the resources to live independently.³⁴ As noted in the Introduction section, autistic people often struggle to find, or retain, employment (and may be underpaid relative to their non-autistic peers³⁴). A recent qualitative study of homelessness experiences (ranging from rough sleeping to “sofa-surfing”) in the United Kingdom found that 5 of 39 participants reported having an autism diagnosis, or “clearly displayed autistic traits.”³⁵ (Churchard et al. also estimated high levels of autistic traits in 12% of their sample of the homeless population.³⁶)

These five participants reported difficulties with employment and being able to afford to live independently.³⁵ In sum, from the studies included in the present review, independent living could be a benefit for many autistic people (including developing essential daily living skills and autonomy). However, it would be inappropriate to conclude that independent living will be beneficial for every autistic person; more exploration of the context of the autistic person and resources available to them is essential to ensure that this transition is appropriate and successful.

As noted in the Introduction section, we examined one transition associated with adulthood, that is, moving home, from a perspective typical of Western countries. This typically assumes that most people will reside with their parents, or other family members, before embarking on a period of “intermediate residences” (e.g., college rooms, flat shares with friends or others¹⁷) before settling into a more long-term home (either alone or with a partner). Indeed, the independent living movement started as a position to ensure people with various atypicalities** were able to have the “same control and the same choices in everyday life” (p.37).³⁷

In the foregoing discussion, therefore, we have interpreted independent living as a “good,” based on the responses of both autistic people and parents of autistic people. However, it may be that this notion of independent living (which does not mean living in isolation, without support from others) is not desired by all autistic people (and may not be possible, for those with very complex needs). Instead, it may be better to consider the autonomy of the autistic individual. For instance, Späth and Jongsma³⁸ discussed a framework of positive and negative liberty, which may help us understand autonomy for autistic people; positive liberty is what an individual is permitted to do, whereas negative liberty is the individual's life being free from undue outside influence.³⁸

In the present context, supporting positive liberty may involve, for example, encouraging the autistic person to develop their skills (which may lead to more independence within the home) and encouraging decision-making. Supporting negative liberty may involve challenging assumptions about what a “typical” living situation looks like (which, e.g., may entail greater support from family than for a non-autistic person); indeed, an autistic person may need a lot of support in very specific life domains (e.g., managing bill payments) but may be perfectly independent in all other domains. The autonomy of the autistic person may be best supported by identifying and supporting their own wants and needs (positive liberty) and leaving the autistic person to pursue their own lifestyle, however, atypical it may seem (negative liberty).

A final consideration, related to the foregoing, is that housing support services for autistic individuals will differ between countries. For instance, in America, housing supports for individuals with ID are provided by both private and public institutions (with notable variations depending on whether the service provision is private or public),³⁹ which is not the same around the world. Therefore, the findings from the present review have not considered the differences between nations in terms of what formal systems are in place to help autistic adults who wish to transition to independence. This review is intended as a first approach to the question of what we know about the moving home experience for autistic adults; there is clearly a strong need to characterize the role of supports available to autistic adults (which will vary by location) in any future research on this topic.

Strengths and limitations

Our review used multiple stages of reliability checking, ensuring that our final set of articles is exhaustive of all relevant articles recovered by our search strategy. Furthermore, our inter-rater reliability showed acceptable to excellent internal consistency for our quality assessment. However, we must acknowledge the main limitation of the present review. Namely, we designed a search strategy to identify articles about the process of moving home and we did not find articles about this specific process. To that end, we included articles that were as closely related to the question as possible (e.g., perceived benefits and difficulties of living independently). Thus, although the articles we include are likely all the relevant articles from those recovered, we cannot guarantee that our review includes every article about the independent living experiences of autistic people.

A significant limitation of our review is that our findings are only representative of autistic adults capable of self-report; the experiences of autistic people with an ID or learning disability are only indirectly represented via proxies. Thus, our results only speak to a portion of the autism spectrum and those from Western countries in particular. It is important that future research in this area, where possible, try to include autistic people who have ID or learning disabilities as these individuals' experiences should be included in research, to better understand their needs and wants.

Research agenda and recommendations

Our review found a paucity of research on the autistic experience of moving home. As a first step toward filling this gap, the authors are currently undertaking a mixed-methods study to more deeply explore the issues autistic people face when moving home. Specifically, we are focusing our investigation on the process of moving from one residence to another. We are collecting quantitative and qualitative data about autistic people's experiences of moving home, from across the United Kingdom. This includes data from an online survey and follow-up set of in-depth interviews with autistic people about their experiences, and what sort of resource they would like to assist planning a home move. The ultimate aim of this work is to co-design a resource that will help autistic people navigate the moving process.

Our ongoing project is only an initial exploration of this clearly underresearched area. We propose that future research examine the specifics of transitions that autistic people experience. In this area, this would encompass multiple aspects of the moving process. An initial outline of this process could involve the autistic person (and those who support them): realizing and deciding that they want to live independently; finding a suitable place to live (which could entail executive functioning issues around deciding between options); viewing a potential home (which may entail social interactions with, e.g., letting agents—which may be challenging for autistic people); deciding (from possible options) which home to live in; organizing the moving process (e.g., changing utilities, redirecting mail, etc., which may also involve executive functioning issues); navigating the moving day(s), and settling in. Future research will likely elaborate on this process and help improve these transitions for autistic people.

In sum, rates of independent living are often poor for autistic adults, with many residing with parents or in supported living programs. Our review, however, identified that independent living is desired by autistic people (and their relatives) and seen as conferring a wide range of benefits. We also discussed barriers to independent living. Our review highlighted that, to date, no studies have examined the moving process with autistic people. Such research would be important to recognize strengths and identify areas of need for which supports for moving home could be developed.

Footnotes

Authorship Confirmation Statement

L.C., E.K., and R.P. designed the search strategy, ran the initial searches (including deduplication), and contributed to data extraction. R.P. assisted with quality assessments on the included studies. D.M. and V.M. contributed to the design of the search strategy, completed the ancestry searches, completed the data extraction and quality assessment, and drafted the initial article. F.H. contributed to designing the search strategy. All authors contributed to the final version of the article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

Supplementary Material

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