Exploring the home environment of adults living with autism spectrum disorder: a qualitative study

Abstract

Introduction: The challenges experienced by adults living with autism spectrum disorder (ASD) regarding their interaction with their home environment are thinly documented, although these issues persist with age. Based on the Model of Competence, this study aims to explore the human and nonhuman elements of the home environment influencing the functioning of autistic adults.

Methods: An exploratory-descriptive qualitative study was conducted in Quebec City, Canada, with autistic adults (n = 6). Individual semi-structured interviews were undertaken by a single interviewer until data saturation was reached. A content analysis was conducted using NVivo software with a list of codes adjusted according to new emerging themes.

Results: Eight themes emerged and were grouped into three categories: 1) Person – Adult living with ASD: coping skills, anxiety; 2) Microsystem – Home environment: entourage, sensory elements, spatial arrangement; 3) Person-environment interaction: routines, socialization, control. The experiences of autistic adults highlight the varied interactions experienced with the nonhuman and human elements of their homes, sometimes resulting in a situation of handicap related to their activities and roles.

Conclusion: This qualitative exploration of the environmental challenges experienced at home by autistic adults introduces a better understanding of the person-environment interaction, allowing for easier functional assessment and improved home support.

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder, manifested by persistent deficits in social interactions, accompanied by restricted and repetitive behaviors, activities, or interests (American Psychiatric Association 2013). The prevalence of ASD in adults is generally poorly documented, due to a lack of census with this population compared to the pediatric population (Dietz et al. 2020). According to recent data, the prevalence of ASD is estimated to be 7.6/1000 worldwide, 12.2/1000 in Canada, 22.1/1000 in the United States, 25.2/1000 in Australia, and between 10/1000 and 20/1000 in the United Kingdom (Baxter et al. 2015, Chiarotti and Venerosi 2020, Dietz et al. 2020, Hogrefe 2021). The social and behavioral challenges associated with ASD persist with age, generating functional limitations that progress as individuals evolve in their environment from childhood, through adolescence, and into adulthood. ASD manifests in three levels of severity in terms of required support (level 1: requiring support; level 2: requiring substantial support; level 3: requiring very substantial support) (American Psychiatric Association 2013). Thus, adults living with ASD present a diversity of profiles, challenging the understanding of their functional issues (Fortuna et al. 2016, Howlin and Magiati 2017, Magiati et al. 2014). Considering the lack of consensus on the terminology to refer to the autistic population, mostly professionals use person-first terms (e.g. adult living with ASD) but the ASD population prefers identity-first terms (e.g. autistic adult) (Bottema-Beutel et al. 2021, Kenny et al. 2016); consequently, a combination of these two terminologies is used in this article.

Anxiety, social understanding, sensory information processing deficits, sensory hyperreactivity, and low tolerance towards change are difficulties experienced by many autistic adults, even though maladaptive behaviors decrease with age (Howlin and Magiati 2017, Hwang et al. 2020, Kapp et al. 2011, Magiati et al. 2014, South and Rodgers 2017). These characteristics can influence the autistic adults interacting with the home physical environment, as well as with the individuals, since these elements can arouse anxiety as much as pleasure in people who adjust differently to sensory stimuli and to the unpredictability of the environment (Gaudion 2015). For example, in interactions with the physical environment, unusual sensory processing can affect the interpretation of environmental stimuli in the home environment, potentially leading to maladaptive behaviors unsuitable for positive interactions with others (e.g. avoidance, aggression) and for self-wellbeing (e.g. self-harm, isolation) (Syu et al. 2020). Moreover, behaviors of autistic individuals in adulthood that are less suitable with environmental demands are sometimes associated with cognitive impairments, such as deficits in executive function or cognitive flexibility (Kapp et al. 2011, Magiati et al. 2014). Interacting with others, the different social understandings of autistic adults particularly interfere with the development, maintenance, and understanding of friendly and romantic relationships, often resulting in social isolation, although shared interests may support friendship development (Kapp et al. 2011, Magiati et al. 2014). As autistic individuals age, they develop compensatory strategies to better adapt to social expectations (e.g. avoiding exhibiting repetitive behaviors in public) or receive support from their families, including parents and siblings (e.g. maintaining routines) (American Psychiatric Association 2013, Fletcher et al. 2019, Sosnowy et al. 2018). Although compensatory strategies used by adults living with ASD support their daily interactions, new and unpredictable situations perpetuate their challenges related to tolerating change on a day-to-day basis, which can impact their functioning (American Psychiatric Association 2013, Hwang et al. 2020).

Several studies highlight that most autistic adults live with or depend on their parents, while parents often remain their primary caregivers (Fortuna et al. 2016, Magiati et al. 2014, Poon and Sidhu 2017, Sosnowy et al. 2018). According to two longitudinal studies conducted in Australia and the United States, respectively, with 89 and 1860 participants, up to six times as many young autistic adults live with their parents (Australia = 61%; United States = 87.1%) compared to those living independently (Australia = 9%; United States = 16.6%) (Anderson et al. 2014, Gray et al. 2014). Many parents of autistic adults express concerns about their children’s ability to live independently, particularly when they have lower functional abilities (Autuori 2018, Sosnowy et al. 2018). Given the limited independence and social isolation most autistic adults experience, these adults spend considerable time in their homes, although autistic adults can participate in successful employment and school activities when provided with sufficient support (Poon and Sidhu 2017, Scheeren et al. 2021). In all cases, living in their own homes remains their preferred living environment notwithstanding available family support, which emphasizes the importance of a home environment tailored to their characteristics (Autuori 2018, Scheeren et al. 2021). This concern reinforces the value of exploring the environmental issues they experience in their homes from a functional perspective.

While interest in the functional impact of environmental sensory elements in work and school settings is growing, few studies have focused on the home environment of autistic adults as a whole (Fletcher et al. 2019, Gaudion 2013, Gaudion 2015, Gaudion et al. 2015, Krauss et al. 2005, Lowe et al. 2014, Marcotte et al. 2020, Robertson and Simmons 2015, Trembath et al. 2012). Considering their conception and understanding of the environment mainly shaped by their sensory preferences and their interactions with the physical elements, the people, objects, and stimulations of the home environment may be experienced differently by autistic adults than neurotypical people (Gaudion 2013, Gaudion et al. 2015). Regarding the interactions with the people in the home, mothers report that living at home with their adult autistic child enhances the family’s quality of life and peace of mind, allows mutual help and learning experiences, and provides a sense of happiness and security for the autistic adult. On the contrary, some family caregivers may need to provide constant supervision but lack resources for respite (Krauss et al. 2005). For some individuals with ASD, environmental sensory stimuli overload (e.g. bright or fluorescent lights, vivid colors, striped patterns, loud noises, high-pitched sounds, shiny floors, strong odors) or unpredictability (e.g. color modifications, false textures) may affect their activities performed with objects in their physical home environment (Fletcher et al. 2019, Gaudion 2013, Robertson and Simmons 2015). Despite these limiting environmental elements, the unique interests and characteristics of adults with autism can be used positively to inspire some strategies to facilitate environmental interpretation and promote activity participation. These strategies include: the integration of the person’s unique interests into the environment (e.g. decoration), environmental consistency and structure, activity planning with smooth transitions, clear visual or auditory cues indicating the function of environmental elements (e.g. positioning objects in a logical sequence based on their use), use of technology, and provided control over the environment, which can modulate anxiety and minimize sensory overload (Fletcher et al. 2019, Gaines et al. 2016, Gaudion 2015, Gaudion et al. 2015, Lowe et al. 2014, Marcotte et al. 2020, Robertson and Simmons 2015). According to family caregivers, they promote the participation and self-determination of autistic adults, however this sometimes leads to a loss of their own social interactions, in addition to stressors that are difficult to manage (Cheak-Zamora et al. 2020, Krauss et al. 2005).

Due to the diverse profiles of autistic adults, environmental stimuli can result in different impacts. For example, bright colors may be pleasant and facilitating for individuals with sensory hyporeactivity, but they are generally unpleasant and disturbing for individuals with sensory hyperreactivity (Gaines et al. 2016, Gaudion 2013). In the context of the home setting, understanding the impact of the environmental elements on autistic adults may be crucial to support their functioning (Gaines et al. 2016, Gaudion 2015, Lowe et al. 2014, Mahdi et al. 2018, Sosnowy et al. 2018).

There is a lack of studies specifically exploring the perceptions of autistic adults about how they experience interacting with the physical and social elements of their home environment, from the perspective of person-environment fit. Some studies address the environment of autistic individuals focusing on children, the sensory elements of the environment or both (Fletcher et al. 2019, Robertson and Simmons 2015). However, needs related to their home environment are diverse and they evolve as autistic adults change with age, including a considerable social aspect in addition to the sensory component (Kapp et al. 2011, Robertson and Simmons 2015). Few studies have addressed the experience of autistic adults regarding their home, further elaborating on their interaction with the physical elements of the environment (Gaudion 2013, Gaudion 2015, Gaudion et al. 2015, Lowe et al. 2014), although further understanding of the interaction between autistic adults and the social elements of their home would also be relevant. A better understanding of the interaction between autistic adults and their environment, namely the person-environment interaction, is important to inform a holistic view in clinical reasoning and to promote their home support, independence, and quality of life.

Conceptual framework

The conceptual framework used is the Model of Competence (Rousseau et al. 2002, Rousseau 2016, Rousseau 2017), which explains the person-environment interaction. This model includes six concepts (person, environment, activity, role, situation of competence, and situation of handicap). In the Model of Competence, the person is in constant interaction with his or her environment, which includes nonhuman elements, namely the physical environment (e.g. architecture, objects) and human elements, namely the people surrounding the person (e.g. family). The environment is divided into four systems: the microsystem, i.e. the person’s immediate environment; the mesosystem, i.e. the interaction between several microsystems; the exosystem, i.e. the external environment of the person; and the macrosystem, i.e. this system includes the previous ones and represents the values and the culture of the society (Bronfenbrenner 1977). In this conceptual framework, the interaction between the person and the nonhuman elements of his/her environment represents the performance of activities, for example when a person uses headphones to listen to music, climbs stairs to enter his/her home, or uses a microwave oven to heat up a meal. The interaction between the person and the human elements of his/her environment represents the roles assumed, for example when the person talks with a parent or socializes with a friend. The situation of competence refers to an effective interaction between the elements of the environment and the characteristics of the person, resulting in successful activities or roles. Conversely, the situation of handicap refers to an ineffective interaction between environmental elements that are incompatible with the characteristics of the person, leading to the failure of activities or roles (Rousseau et al. 2002, Rousseau 2016, Rousseau 2017). An example of a situation of competence would be if a person uses a pair of headphones that are compatible with his or her needs and preferences, to listen to music in a satisfying way. A situation of handicap would be if the headphones used are not loud enough to accommodate the person’s sensory characteristics or preferences for listening to loud music.

The present study focuses on the microsystem, represented by the home. The person is represented by the autistic adult; the environment is represented in its two dimensions, human (e.g. other people who share the home) and nonhuman (e.g. home architecture, objects); and the person-environment interaction is manifested by the roles and activities of the autistic adult. This conceptualization allows for an exploration of the experience of autistic adults in a holistic manner, taking into account the person-environment fit (Figure 1).

Figure 1.

Operationalization of the Model of Competence.

Note. Adapted from « Model of Competence: A Conceptual Framework for Understanding the Person-Environment Interaction for Persons with Motor Disabilities », by J. Rousseau, L. Potvin, E. Dutil and P. Falta, 2002, Occupational Therapy in Health Care, 16 (1), p. 20. (https://doi.org/10.1080/J003v16n01_02). Copyright 2002 by The Haworth Press, Inc.

In line with the conceptual framework, the purpose of this study is to explore the human and nonhuman elements of the home environment that may influence the functioning of adults living with ASD, that is, the person-environment interaction. It appears that, in terms of scientific and practical relevance, exploring the experience of adults living with ASD will provide a better understanding of this interaction. The research question is: What are the human and nonhuman elements of the home environment of autistic adults that influence the performance of their activities and the fulfillment of their roles?

Material and methods

An exploratory-descriptive qualitative research design was conducted to describe the person-environment interaction from a holistic perspective aligned with the conceptual framework (Creswell and Creswell 2018, Hunter et al. 2019). Ethical approval #2017-554 was obtained from the Sector Research Ethics Committee in Rehabilitation and Social Integration of the Centre interdisciplinaire de recherche en réadaptation et intégration sociale (CIRRIS), Quebec City, Canada. All participants received oral and written information about the study and then gave their free and informed written consent.

Participants

Participants (n = 6) were recruited by email, in Quebec City, Canada, via the Regroupement des Organismes pour Personnes Handicapées de la région 03 and Autisme Québec, using snowball sampling (Patton 2015). Sample size was determined by reaching data saturation (Guest et al. 2006). Inclusion criteria were: being an adult (≥18 years old) with a confirmed or probable diagnosis of ASD; communicating in French; living within ≤75 km of the CIRRIS; not having a behavioral disorder that could compromise the conduct of the interview; and being capable of consenting.

Data collection

Data were collected between October 2018 and March 2019 through sociodemographic questionnaires and semi-structured individual interviews (Silverman 2015). An interview guide (Table 1), including 16 open-ended questions based on the research question and conceptual framework, was designed by two authors (CLD, ARR), validated with the principal investigators (JR, EM), and pretested with a colleague paying attention to the clarity of the questions (Creswell and Creswell 2018, Guest et al. 2006). The same interviewer, unknown to the participants (CLD) interviewed each participant once, in the participant’s natural environment or in the CIRRIS, at the participant’s convenience. The interviewer was a graduating bachelor’s degree student in occupational therapy with professional experience working with autistic adults. The interviews were audio recorded and averaged 75 min in length (range: 45–140 min). After each interview, the interviewer took observational notes in a logbook regarding the participants’ behaviors and emotions, as well as subjective impressions and questions (Creswell and Creswell 2018). As the data were collected, to verify that data saturation was reached, the interviews were listened to gradually and a table was designed to capture each participant’s main statements. When the main variations of the phenomenon were identified and the data did not add any new content related to the research question, the data collection was completed (Guest et al. 2006).

Table 1.

Some questions from the interview guide.

Question category	Statement
Key questions on activities and roles	Describe a typical day. What do you usually do on a typical day? What activities are the most important to you or do you do the most often? What activities do you enjoy the most? Do you do these activities at home? Describe where these activities take place. (Guide to elaborate on environmental elements) What are your least favorite activities? Do you do these activities at home? Describe where this activity takes place. (Guide to elaborate on environmental elements) How does ASD impact your daily life and your relationship with your environment (human, nonhuman)? How does ASD affect your routines?
Key questions on nonhuman environment	Can you name some things in your home that you find particularly enjoyable? Think about your bedroom, for example. What do you like about this room? (Guide to elaborate on environmental elements: e.g. light, noise, size, materials, and textures, etc.) Can you name some things in your home that you find particularly unpleasant? Think about your bedroom, for example. What do you dislike about this room? (Guide to elaborate on environmental elements: e.g. light, noise, size, materials, and textures, etc.)
Closing questions	In summary, when you think about your home, what is the first thought or emotion that comes to your mind? If you could build your ideal home, what would it be like? This concludes the interview. Before we finish, is there anything else you would like to tell me?

Analysis

A thematic analysis following an iterative process was conducted (Creswell and Creswell 2018). To do so, interviews were anonymized and then transcribed verbatim, using transcription symbols documenting nonverbal elements (Silverman 2015). A qualitative code list, based on the conceptual framework, was developed by the research team, validated by consensus, and adjusted, when necessary, based on the data collected (Denzin and Lincoln 2018, MacQueen et al. 1998). To validate the coding, two independent raters (CLD, ARR) coded five random transcript excerpts (agreement rate = 85.71%). One reviewer (CLD) then completed full coding of the transcript data, using NVivo software (QSR International 2016). The coded data were reduced in relation to the research question, allowing themes and subthemes to be identified. Results from participants were compared to highlight convergent and divergent data. The authors collectively validated the coding, data reduction, and themes identification.

Results

The sociodemographic characteristics of the participants (n = 6) are presented in Table 2. Participants ranged in age from 18 to 52 years (mean: 35 years old). Four participants reported comorbidities (complex regional pain syndrome, migraine, anxiety, attention deficit hyperactivity disorder, or bipolar disorder). All autistic participants had the first or second level or severity in terms of required support (American Psychiatric Association 2013).

Table 2.

Participants sociodemographic characteristics.

Characteristics	n (%)
Gender
Female	4 (67%)
Male	2 (33%)
Age
18-25 years old	2 (33%)
34 years and older	4 (67%)
Reported comorbidity	4 (67%)
Marital status
Bachelor	3 (50%)
Common-law partner	2 (33%)
Separated	1 (17%)
Education level
College studies	3 (50%)
University studies	3(50%)
Employment status
Paid employment	4 (67%)
Unemployment	2 (33%)
Siblings with ASD	3 (50%)
Parents’ education level
College studies	1 (8%)
University studies	10 (83%)
Professional studies	1 (8%)
Living arrangement (parents)
Apartment	1 (17%)
House	5 (83%)
Home modification (parents)	1 (17%)
Pet	6 (100%)

The results present, in a descriptive manner, human and nonhuman elements of the home environment of autistic adults that influence the fulfillment of their activities and roles. Eight themes emerge from the data (Figure 2): coping skills, anxiety, entourage, sensory elements, space arrangement, routines, socialization, and control. These themes refer to elements of the person (coping skills, anxiety), the human environment (entourage), the nonhuman environment (sensory elements, space arrangement) and the person-environment interaction (routines, socialization, control). The themes are classified into three categories based on the Model of Competence, namely: Person-Adult living with ASD, Microsystem-Home environment, and Person-Environment Interaction. Interview excerpts are presented to support and illustrate the credibility of the findings (Denzin 2014); when necessary, clarifications or rephrasing are inserted into the interview excerpts in square brackets to clarify the statements. Participants’ identities are replaced with pseudonyms to preserve their anonymity (Patton 2015), while allowing for a more fluid presentation of the data. Moreover, the observational notes taken in the journal helped to select excerpts that were representative of the participants’ perspective, along with nuancing the interpretation of the results.

Figure 2.

Human and nonhuman elements of home environments of autistic adults influencing the performance of activities and roles.

Person – adult living with ASD

Person-related themes particularly highlight two personal characteristics: coping skills and anxiety.

Coping skills

Five participants mention that being diagnosed with ASD has allowed them to implement daily strategies to adapt to their environment. For example, Kim chooses to wear sunglasses when the light is too bright. Charlie puts it this way:

When you don't know, you endure. And when you know, you understand; well, you can do something. (Charlie)

Similarly, four participants emphasize their ability to show empowerment, acceptance, and flexibility in order to solve problems effectively and adjust to their home environment, especially with neurotypical people, those without an ASD diagnosis. Laura clarifies:

I'm trying hard for my part… Personally, I don't think it's only up to the neurotypicals to adapt. (Laura)

In contrast, Kim and Marie express that they use avoidance rather than flexibility as a strategy to cope with situations when interaction with people is difficult (e.g. talking in a noisy environment, interacting in presence of unfamiliar people).

Anxiety

For four participants, the experience of anxiety emerges as a barrier to person-environment interaction, particularly when the interaction takes place with the human environment (other people). Among other things, their anxiety may be related to an experience of hyperreactivity to stimuli that exceed their threshold of sensitivity, which sometimes manifests itself in physical discomfort (e.g. migraine, hypotension) or fatigue. For Laura, this experience with sensory hyperreactivity (e.g. strong smell in the bus) can interfere with her social behaviors, making her particularly more irritable towards others.

Microsystem – home environment

The microsystem category includes three themes divided in relation to the human and nonhuman environment: entourage, sensory elements, and spatial arrangement.

Human environment: Entourage

All participants indicate that they cohabit with their family or spouse, expressing that the people in their home influence their comfort. For example, Kim reports that when her spouse moved in with her, her personal space was reduced.

Then on top of that, in the meantime, my spouse moved in. So, originally, I was going to be by myself in a 4 ½ [two-bedroom apartment], now there are two of us. So, that's it: the space was calculated for… for me alone. So, it changes the picture a little bit… (Kim)

In terms of relationships with those around them, Laura and Marie mention that they do not appreciate visits from strangers; Laura specifies that she does not accept any judgmental attitude from her guests. As for intimacy, Laura expresses that she does not enjoy physical contact and cannot sleep with anyone, which was detrimental to her previous romantic relationship. In fact, three participants mention that difficulties in their relationships were the reasons to suspect an ASD diagnosis. However, Kim notes that her partner’s autistic traits, although not diagnosed, lead to a mutual understanding of their attributes during their interactions.

Nonhuman environment: Sensory elements

Participants bring up positive and negative aspects towards sensory elements, referring to uniformity, soothing, concentration and intensity. As presented in Table 3, participants’ experiences vary according to their respective sensory experiences and sensitivities; these experiences are sometimes contradictory from one participant to another, illustrating the diversity of their profiles.

Table 3.

Participants’ experiences and effects associated with sensory elements.

Sensory element		Experience		Associated effects
		Positive	Negative
Color	blue	X	X	Appeasement (Laura, Kim, Thomas), impersonal, productivity (Sophie)
	orange	X		Association to history (Sophie)
	peach		X	Violence (Sophie)
	purple		X	Unpleasant (Laura, Sophie)
	white	X		Calm, rest (Sophie, Kim), association to hospitals (Marie)
	yellow		X	Disgust (Sophie)
	vibrant (e.g. red)		X	Deconcentrating, agitating (Sophie, Marie)
	neutral (e.g. grey, burgundy)	X		Calm (Laura, Marie)
Light	natural	X	X	Nice (Laura, Sophie, Kim Thomas, Marie), invasive in winter (Sophie)
	neon		X	Harsh, pain (Laura, Sophie, Thomas, Charlie)
	subdued/warm toned	X		Nice (Sophie, Marie)
Odor	of grass		X	Bad memories (Sophie)
	of gasoline	X		Good memories (Sophie)
	strong (e.g. clove)		X	Irritation, frustration (Sophie)
	animal (e.g. musk)		X	Deconcentrating (Sophie)
Texture	soft (e.g. cotton, chalk)	X	X	Hypotension (Sophie), pleasant (Kim)
	irritating		X	Discomfort (Kim)
	firm (e.g. mattress)	X		Comfort (Kim)
Shape	curved (e.g. circle)	X	X	Comfort (Laura), discomfort (Sophie)

Uniformity

Many participants emphasize the importance of uniformity and consistency of color and shape in the home environment. Sophie and Kim mentioned that a variety of colors belonging to similar color shades (e.g. green, yellow) make them more comfortable, breaking up monotony while maintaining a cohesive layout. In addition, Sophie and Thomas appreciate the homogeneous aspect of symmetrical shapes, which contributes to the coherence and consistency of the environment. However, two participants report conflicting experiences with certain shapes; in particular, circles and curves make Sophie uncomfortable, while Laura describes her ideal home as round.

[My ideal home] would be round! No corners. (…) “[Why] Round”? Pfff it doesn't hurt, I don't know it's, it's like… um… it's comfortable. (Laura)

Soothing

Five participants mention that light or neutral colors (e.g. blue, grey, white) are necessary in their home environment because they are calming. However, some colors can have opposite effects. For example, Laura finds blue soothing for resting, while Sophie finds it impersonal and more appropriate for spaces dedicated to productive activities (e.g. study) than for resting spaces. Kim and Marie also find soft textures soothing, due to their sensory hyperreactivity. Sophie, on the other hand, reports that she has difficulty tolerating soft textures such as chalk, which prevents her from functioning optimally:

Anything that is too soft to the touch, it…. I don't like it, at all, at all, at all … Chalk, it's almost disabling. (Sophie)

To feel well in their home, Laura, Sophie and Thomas highlight the importance of a warm and comforting atmosphere.

I also like the uh rustic homes that are warm… Where you feel good. (Thomas)

Four participants report that they appreciate environments connected to nature (e.g. forest, lake), which generally make them soothing.

Concentration

Four participants mention that certain colors and patterns can create stimulations that negatively affect their concentration. Among others, Sophie, Thomas and Marie point out the stimuli due to bright colors, cold lights and reddish toned wood.

It's okay to have bright colors, but not too bright, like too flashy. It can be distracting. (…) It's hard to explain, but it's like, it takes your attention. (Marie)

Sophie and Kim report that complex patterns (e.g. mosaic, three-dimensional patterns) tend to take their attention for a long time.

The patterns where uh, it looks like 3D, with cubes, it doesn't bother me as much. It's not disturbing. I wouldn't want that on my walls because that would be exhausting. (…) Same thing on the floor mosaics. It's exhausting because you have to think while looking at them. (Kim)

Intensity

Several participants mention that intense sensory stimuli, especially those visual and auditory, are disturbing to their everyday activities. Four participants express that they appreciated natural light, which provided a satisfying level of brightness without being too intense. For Sophie, natural light is ideal on cloudy days; however, this light becomes overpowering and painful in the winter because of its intensely bright reflection on the snow. Regarding artificial light, Sophie states that she prefers to study with 50-watt bulbs because their luminosity is less intense. For Laura, all ceiling lights are generally uncomfortable because of their brightness. Sophie, Laura and Kim mention that neon lights are particularly harsh and painful because their glow is overly white. They add that the vibration and noise generated by the neon lights, which they perceive as intense, bother them.

Me, it's the neon lights that I like the least. (…) It's more assaulting. (…) Well it's, it's too white. (Thomas)

In terms of colors, the intensity of bright colors is generally too strong and unpleasant according to Laura, Sophie, Kim, Thomas and Marie. Four of these participants also report that loud or soft noises, whose intensity is often disruptive during solitary activities or interactions with people, which can fuel their anxiety.

[When there's a lot of noise,] … it's like I'm not able to… absorb information anymore, because there's only noise, noise, noise, and it takes up all the space, you know. … It's very, very invasive. (Kim)

For Sophie, the perceived intensity of certain stimuli (e.g. colors, smells) is influenced by her past experiences, which evoke specific emotions.

[The color] peach is violence. … In the hospital where I was diagnosed [with ASD], the entirety of the walls are peach. (Sophie)

Nonhuman environment: Spatial arrangement

Laura, Sophie, Thomas, and Marie report that the logical and necessary nature of nonhuman environmental elements, such as the layout and function of the rooms, can influence their activities.

I am UNABLE [emphasis added] to do anything productive in my room. My room is associated with a place to unwind. (Laura)

She also expresses that the colors present in her home should be perceived as functional.

In appliances, you know, now there are lots of colors that [at one point] uh. Pff candy pink… Not sure that I would like that anymore, you know. It might be funny, but… is it really necessary? Not sure. Um… no, the stainless steel, it's not annoying. It's, it's, it's… like ‘Ok’. (Laura).

All participants mention that they feel good in a spacious and uncluttered environment. Four of the participants noted that they feel more in control during their everyday activities when the elements of the environment are visible. Sophie and Thomas express an interest in mezzanines and level floors so that the whole space is visible simultaneously. In addition, Laura, Sophie, and Kim emphasize the need for easily accessible storage to locate objects. Laura stresses her preference for storage options that allow for visibility of environmental elements to find objects while remaining aware that she owns them, stating that if she does not see an object, it does not exist in her mind.

Ideally there would be no panels on the cabinets. (Laura)

Person-environment interaction

The themes related to person-environment interaction that emerged from the interviews were: routines; socialization; control.

Routines

For some of the participants, routines are key to structuring themselves around their occupations. Four participants describe having routines, particularly for sleep, daily tasks, and rest. Sophie, Kim, and Marie mention that, on particularly exhausting or busy days, they need to follow a routine to clear their minds; for example, staring at a wall, playing games, or walking around the house. Sophie describes three sleep routines tailored to her activity level: a short, medium, and long routine.

I wouldn't have such a rigid sleep routine if I didn't have ASD. (Sophie)

In addition, Laura and Sophie regularly engage in activities with a repetitive aspect, which gives them a sense of well-being. For Sophie, this activity is origami.

I don't see time passing. It's something I like to do. Complicated things, but repetitive. (Sophie)

Socialization

It appears that socialization is made more complex when elements in a conversation are not fully explicit, especially when autistic adults interact with non-autistic people. For three participants, socialization is facilitated by openness and support from others. To illustrate the type of openness about her difference that she expects from others, Laura mentions:

If I'm in Japan, it's obvious that I'm not Japanese; so they're going to forgive me for deviations, but, at the same time, they're going to appreciate my efforts… The social codes here, I see it the same way. (Laura)

Although four participants report a supportive attitude from their loved ones, as well as good family ties (with parents, children, or siblings) or conjugal ties, two of them express that their difficulties associated with ASD have manifested themselves in their current or previous conjugal relationship. Regarding her role as a mother, Laura emphasizes that her experience has allowed her to develop her emotional side.

By having [my children], it has made me human…. in terms of feeling, and emotion. (Laura)

At the same time, Marie expresses frustration about her mother’s overprotection towards her, compared to her attitude towards her siblings who do not have ASD.

For five participants, interacting in a group and talking about personal topics can make socializing uncomfortable, depending on who is involved. For example, Marie is not comfortable talking about her experience with her ASD diagnosis and about her hobbies with a stranger. On the other hand, all participants mentioned that socialization is facilitated with people with whom they share homogeneous traits (e.g. other autistic people) as opposed to heterogeneous traits (e.g. neurotypical people). Kim and Charlie state that they understand social interactions more easily when the message is explicit, obvious, and transparent. In this regard, Charlie finds interactions with animals to be more authentic than those with humans:

If an animal wants to come to you, it's going to come to you … There are signs. A human, not necessarily. … He can show the opposite of what he means in reality … You can't know it. (Charlie)

Control

Five participants express that they feel more comfortable in a home environment that they can control, both in terms of nonhuman elements (e.g. having personal spaces, ensuring stability and predictability of elements, opting for mezzanines to see the entire home, removing cabinet doors to see their contents, avoiding false textures to anticipate tactile sensations, etc.) and human elements (e.g. controlling the atmosphere of one’s home when others are present). For example, Marie reports:

It's not the color per se, it's… It's really the fact that it' s changed that irritates me. (Marie)

Moreover, for Sophie, the predictability of the environment allows her to anticipate sensations.

I like to be able to count on my eyes to… see and feel things in advance… so that I feel safer. (Sophie)

Sophie adds that her restricted interests (e.g. origami) are a preference of hers that allows her to have control over her interaction with the environment, which reduces her anxiety. To express their control over the environment, Laura and Charlie bring up the notion of territory. In terms of human elements like visitors, Laura expresses:

At home, that's the difference, it's not up to me to adapt; it's up to…the visitors. (…) ‘You are in our home; you are on our territory… Deal with it!’ (Laura)

She adds, in terms of the nonhuman environment of her home:

Home… it’s, it’s our home. … Um, where I can… be… fully… and completely… myself. (Laura)

Discussion

In response to the research question, this study raises different environmental elements of the home that positively or negatively influence the person-environment interaction of autistic adults. Their experiences highlight a variety of perceptions and lived situations related to the nonhuman and human elements of their home. These situations can often be compensated by strategies or support, enabling for situations of competence. Yet, some situations are incompatible with their strengths, abilities, and difficulties, which can lead to a situation of handicap in some of their activities and roles.

In the present study, regarding the nonhuman environment, the experience of the participants emphasizes a need for control to limit unexpected stimuli as well as unpredictable external influences, which promotes a sense of safety. This need for control highlighted in the results may be due to the intolerance of uncertainty as this aligns with recent published studies (Hallett et al. 2021, Hwang et al. 2020, Lowe et al. 2014). Evidence supports the positive and significant association between intolerance of uncertainty and anxiety in autistic adults, related to their sensory sensitivities and repetitive behaviors (Hwang et al. 2020). As noted in the work of Gaudion (2015), our findings suggest that unpredictable, changing, and uncontrollable environmental demands sometimes interfere with some of the activities or roles of autistic adults in their home context. However, autistic adults in the present study often employ strategies to manage these challenges, which may draw on their coping skills, to provide them with more control and to compensate for unpredictable human and nonhuman elements in the environment. Among other things, performing specific activities compatible with their sensory preferences and particular interests generates a pleasurable feeling of full engagement, providing a sense of control, focus, and enjoyment, which can be generated by restricted interests. Authors have reported the benefits of integrating the strengths and interests of adults with autism to promote their engagement in occupations and socialization (Gaudion 2015, Gaudion et al. 2015, Kapp et al. 2011). As some of their challenges persist into adulthood (e.g. anxiety, sensory hyperreactivity, restricted interests), these characteristics influence their preferences and experiences, and can be used in a constructive manner, depending on the nature, intensity, and consistency of environmental stimuli. The impact of these stimuli in the home environment can be either enjoyable or disturbing to different people, as highlighted by some of the participant’s divergent experiences. These findings are also consistent with literature arguing that the multiple elements and objects in the immediate environment is a source of all sorts of sensations, triggering a variety of sensory, physiological, and behavioral reactions (Gaudion 2015, Livingston et al. 2019, Trembath et al. 2012). Participants’ preferences for certain intensities of sensory stimuli coincide with studies highlighting the negative effect of overly bright lights or bright colors in the environment; these types of environments are distracting and compromise the use of compensatory strategies, whereas more neutral and soothing colors (e.g. blue, white) promote serenity and productivity (Costa et al. 2018, Livingston et al. 2019). However, the divergence in participants’ experiences related to certain sensory elements illustrates the variety of possible profiles, which it supported in the literature (Gaudion 2013, Lowe et al. 2014, Mahdi et al. 2018). This understanding accentuates the importance of space layouts tailored to the sensory and social profiles of adults living with ASD; such layouts could particularly include personal, uncluttered, and open spaces that feature a logical and functional arrangement of nonhuman elements. To add to what is known, the present study highlights the diversity of strategies that autistic adults use to adjust to their nonhuman home environment, either adaptively (e.g. empowerment) or maladaptively (e.g. avoidance), which raises challenges and complexity in finding solutions to support home functioning for this population.

With respect to the human environment, this study highlights the importance of the home context in palliating the different social understandings of autistic adults while interacting with people in their living environment. Three aspects of the person-environment interaction stand out: heterogeneity, homogeneity, and familiarity. For some autistic adults in this study, the heterogeneous traits of those with whom they interact stand out, particularly when it comes to non-autistic people. This heterogeneity represents a barrier that can lead to a feeling of being misunderstood, which has been reported in some studies (Kapp et al. 2011, Livingston et al. 2019, Sosnowy et al. 2018). Conversely, our findings highlight that homogeneity and familiarity emerge respectively when interacting with other autistic people or with known people. For autistic adults, these factors are generally facilitating, making some aspects of interactions more easily predictable. Nonetheless, it must be reiterated that the diversity of profiles of autistic adults makes their experiences vary according to, as noted by some authors, their social skills, needs and coping abilities (Livingston et al. 2019, Sosnowy et al. 2018). In addition, the characteristics of the entourage and society may involve demands and resources that are appropriate, or not, for the social profiles of autistic adults. Consistent with the literature, findings reflect challenges in situations requiring a high level of social interactions, especially in marital and familial relationships (Howlin and Magiati 2017, Kapp et al. 2011, Livingston et al. 2019, Sosnowy et al. 2018). Among other things, social interactions are made more complex when the context implies understanding tacit or implicit elements (e.g. social norms, emotions, etc.), which emphasizes the importance of transparency and authenticity during interactions with others to promote socialization. Indeed, clear and explicit explanations support a better understanding in interactions (Kapp et al. 2011). Although autistic adults are less likely to engage in socialization activities, interest in solitary activities is not specific to individuals living with ASD. As the results highlight, autistic adults are open to interacting with the human environment by adapting their communication style, including using virtual modalities and technologies; as previous studies suggest, autistic adults may be sociable when finding strategies to facilitate initiating interactions (Gaudion 2015, Kapp et al. 2011, Stacey et al. 2019, Trembath et al. 2012). Virtual modalities enable the person-environment interaction to be adapted to overcome social difficulties, such as those related to anxiety. For example, by using an electronic device to communicate (e.g. cell phone), the direct interaction is with the nonhuman environment, which is controllable and predictable unlike interacting face-to-face with the human environment. This finding is consistent with the fact that autistic adults tend to have more success with activities than with roles (Magiati et al. 2014). This makes sense since, referring to the Model of Competence (Rousseau et al. 2002, Rousseau 2016, Rousseau 2017), the activity is the interaction between the person and the nonhuman environment, and the role is represented by the interaction between the person and the human environment. In addition to coping strategies, this study highlights that a supportive and understanding environment, particularly in the family (e.g. comforting, and valuing parent figure), is associated with the development of social skills in autistic adults. As suggested by some authors, this support facilitates their social functioning (Howlin and Magiati 2017, Kapp et al. 2011, Magiati et al. 2014).

In this study, the varied experiences of autistic adults underline the holistic aspect of the dynamic interaction between the person, their environment, and their occupations. This variety aligns with the diverse needs of this population regarding their homes, emphasizing the relevance for personalized (Rousseau et al. 2002) approaches in home-based clinical assessments and home adaptation interventions. The results of this exploratory study help to contextualize current knowledge about the strengths and difficulties experienced by autistic persons as they grow into adulthood, thereby promoting a better understanding of the person-environment interaction in their home environment.

Strengths and limitations of the study

A limitation of the study is that the sample autistic adults does not cover the full spectrum in terms of functional profiles. Having a wider range of perspectives could have provided a more representative view of the breadth and variety of needs of autistic adults in terms of their interaction with their home environment. In addition, data collection was conducted using only the interview method, which relies primarily on the ability to communicate orally and may need to be adapted to make it more inclusive with a variety of profiles (Gaudion 2015). Despite the small sample size due to recruitment difficulties, the quality of qualitative data is usually determined by its thoroughness rather than its quantity; a sample size of six participants may be sufficient to allow meaningful and relevant themes to emerge (Guest et al. 2006), since we obtained saturation. Besides, the variety of socio-demographic characteristics of participants enriches the relationships identified, while the low to moderate level of required support common to all participants helps to control for variability in the data. These elements support the transferability of the study’s findings (Patton 2015). Although the results were not validated with participants, peer debriefing to further analyze the data limited biases in data interpretation and supported credibility (Denzin and Lincoln 2018, Hannes 2011, Patton 2015). Regarding the confirmability of the study, teamwork and journaling promoted reflexivity, allowing to document and manage the influence of the researchers (Hannes 2011).

Conclusion

This qualitative exploratory-descriptive study highlights the influence of the home environment of autistic adults on their activities and roles, paving the way towards the innovation of practices, so that they are better adapted to promote home support for this population. This knowledge allows to identify human and nonhuman elements of the home environment of autistic adults that are relevant to consider in clinical practice. While this understanding is useful to guide clinical reasoning in the functional assessment of person-environment interaction with this clientele, future studies are required to develop appropriate, reliable, and valid assessment methods to support evidence-based practice.

This study is part of a project conducted in Quebec, Canada to develop an instrument for assessing the home environment of adults living with ASD.

Funding Statement

This work was supported by Office des personnes handicapées du Québec (grant #N/D2231); Fondation canado-haïtienne pour la promotion de l’excellence en éducation (scholarship); Université de Montréal (scholarships); Faculty of Medicine, Université de Montréal (scholarship); School of Rehabilitation, Université de Montréal (scholarship); Office des personnes handicapées du Québec (scholarship).

Declaration of interest statement

The authors report no conflicts of interest. This work was supported by the Office des personnes handicapées du Québec under grant #N/D2231.