Abstract

Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and family, and considered their families as a resource for their empowerment and development of resilience. The study participants' informal networks were composed of only a few individuals who, moreover, were mostly of dissimilar age and also included support professionals. The participants typically described themselves as excluded from others, an experience that was articulated most conspicuously in their narratives about the special schools they were attending.

Research on children growing up with parents with intellectual disability (ID) has remained very limited, particularly from the children's perspective. According to research reviews (Collins & Llewellyn, 2012; Swedish National Board of Health and Welfare, 2005), only a few studies in the area have included children or adult children as informants about their own upbringing. Thus far, most studies about children who have parents with ID have focused on the outcomes for the children rather than on the children's own perception of their everyday life (e.g., Feldman & Walton-Allen, 1997). Nevertheless, some studies have been carried out regarding children's experiences of family life when one or both of the parents have ID. These studies, derived from the West (e.g., Booth & Booth, 1998; McConkey, 2005, Perkins, Holburn, Deaux, Flory, & Vietze, 2002; Ronai, 1997), quite frequently tackle the subject in the Nordic countries (e.g., Faureholm, 2007; Gustavsson, 1998; Traustadóttir & Sigurjónsdóttir, 2005). They present retrospective accounts by adults looking back at their childhoods, or are case studies about everyday life among children and young adults, or they are longitudinal studies that follow children from childhood into adolescence. Their results, however, uniformly show the individuals studied to have faced a variety of difficulties when growing up. These difficulties are traced back partly to the parents' lack of competence in their parenting and caring roles and partly to an environment that treats the family members with disrespect and scorn. The parents' impairment seems to have led often to labeling that stigmatized the entire family, affecting the social condition of the children, and prompting the study participants to report experiences of being excluded and rejected by others frequently during childhood.

Despite negative experiences during childhood, most of the individuals participating in these studies seem nevertheless to have managed fairly well in their everyday life as adults (see e.g., Booth & Booth, 1998; Faureholm, 2007; Traustadóttir & Sigurjónsdóttir, 2005). Faureholm (2007), however, found there to be a difference in this respect between young men and young women. The young women she studied were more often clients of social services than the young men, many of them had become parents at a young age, and no more than a few of them were engaged in paid work or ongoing education. Of the young men included in the study, all except one were engaged in paid work or ongoing education, and none had become parents or clients of the social services.

The studies also reveal the everyday life of adults with ID whose parents also have ID to be marked by experiences of mobbing or bullying, social exclusion, and lack of informal networks and close friendships (Booth & Booth, 1998; Faureholm, 2007; Gustavsson, 1998; McConkey, 2005; Traustadóttir & Sigurjónsdóttir, 2005). Booth and Booth (1998), for instance, found their study participants and their families to have suffered from social exclusion, with the entire families having been subjected to discriminatory treatment. The finding merits special attention, as the study authors also found external support to be a key factor in the development of individual and family resilience. Two circumstances in particular seemed to be of importance in this respect. The first was the presence of a network of supportive relations involving school friends, helpful neighbors, and support workers. The second was a broader sense of participation and involvement that came from workforce participation, participation in the local community, and involvement in associations. Of key significance here was not only that the persons felt able to draw support from the community, but also that one could oneself contribute something to the community. Similar findings have been reported by Gustavsson (1998) in his interview study of young adults with ID who had parents with similar disability. The participants in the study were aware of their rights and possibilities to make different claims as citizens in the Swedish society. This was explained by the positive impact of the family and the study participants' ability, as the “second integration generation,” to share their experiences with their parents who were or had earlier been in a similar position. This seemed to increase confidence among the young adults interviewed, helping them develop a strong belief in themselves as citizens and members of the society.

What previous research has thus shown is both the subjection of these children and young adults to processes of exclusion and the importance of close relationships with, and support from, the family and other key actors in developing resilience in the face of such processes. Indeed, having supportive networks seems to be of particular significance to these individuals as adults, given their experiences of exclusion and the stigmatization of their family during their childhood. Research has also confirmed the importance of one's ability to become an active member of the society. In dealing with the challenges inherent in the everyday life of those living with ID, support from parents, family, and other key persons in one's life can help mobilize strengths, skills, and competencies needed to become an active member of society, contributing to what can be identified as an empowering and resilience-building process (Rutter, 2001).

Against this background of exclusionary and inclusionary processes as identified by previous research, and in light of the experiences of children and adults with ID that have been brought forward, the aim of this study is to contribute to the sparse knowledge currently available about young adults with ID. The article explores the perceptions and experiences that such young adults have of their everyday life as children of parents with ID by analyzing their descriptions of those aspects of their lives that contribute to their experiences of exclusion and inclusion, or where those processes become manifested. How do young adults with ID describe their life satisfaction, support networks, and perception of themselves, and how do these descriptions reflect the actuality and impact of any exclusionary and inclusionary processes in their lives?

Methods

Recruitment

The young adults participating in this study were recruited through professionals working at adult habilitation centers (n  =  7) and special schools (n  =  3) in the region of Västra Götaland in Sweden. The professionals involved in the project knew the recruited participants and their families very well, since they provided support and/or services to both, and were able to attest to the fact that one or both parents of the invited participants had ID. In some cases, moreover, the parents, too, attended a special school and/or received support from the adult habilitation centers for which the professionals worked. The services provided by a special school or adult habilitation center form part of the support and services offered under the country's Act concerning Support and Service for Persons with Certain Functional Impairments (Lag om stöd och service till visa funktionshindrade, SFS 1993:387), aimed at guaranteeing good living conditions for all qualifying individuals aged 65 or under in the country. According to the law, a condition for being able to partake in these services is having a disability such as intellectual disability, however, it was not possible through other means to separately confirm that all of the parents had been diagnosed with ID.

Study Participants

The study participants (n  =  10) were aged 18 to 32. All of them had an intellectual disability and had lived most of their childhood with at least one parent having the same or a similar disability. Three of the participants also benefited from special housing arrangements. All participants received different forms of financial and economic support as well. Table 1 describes the participants in greater detail.

Table 1

Study Participants

Study Participants
Study Participants

Interview Process

All of the participants were interviewed twice, with the time and location of the interviews determined by the participants. All of the locations where the participants were interviewed were familiar to them from the past. A few of the meetings took place in the interviewees' homes. All participants were met individually. The discussions were digitally recorded and transcribed from audio files. The questions in the open-ended thematic interviews and the questionnaires used were read to the participants to ensure comprehension and reliability.

Research Tools

To be able to explore more in depth the study participants' experiences of their everyday life and relate these experiences to the findings of previous research concerning exclusion and inclusion and the importance of social networks such as family, three different tools were used in this study. First, to gain access to the participants' descriptions and perceptions about their everyday life, open-ended thematic interviews were used. The different themes addressed in the interviews were derived from previous research and were informed by the theoretical perspectives of empowerment and resilience. The guiding questions addressed the study participants' everyday life in society, the relationships within their families, and the participants' informal and formal social networks. The specific themes covered included the participants' activities in everyday life, living arrangements, school/work situations, contacts with classmates/coworkers and support-providing professionals, friends and friendships, leisure time, as well as their family of origin, parents, siblings, and extended-family members. The last-mentioned theme focused on individual factors and reflections about the participants' perceptions of their own strengths and weaknesses, load factors, vulnerability, and support received. For every theme, questions were raised about the participants' descriptions, perceptions, and experiences regarding specific issues.

In addition to interviews, questionnaires measuring life satisfaction and social networks were used. The purpose of these was to deepen the understanding of participants' experiences of everyday life and to uncover their views and perspectives concerning the inclusionary and exclusionary processes that impacted their lives. The questionnaires were also employed for triangulation purposes and to help highlight other aspects of an issue already brought to light in the interviews. The questionnaire used for charting the participants' social networks (Family Support & Services Project, 2000; hereafter SIG) was specifically developed for individuals with ID, and the life satisfaction questionnaire that was employed in this connection was adapted for the participants in this study. The latter questionnaire (hereafter “LiSat”), which was a modified version of the questionnaire form “Life Satisfaction Checklist,” was completed by the participants, while the network questionnaire was completed jointly by the interviewer and the participants.

LiSat was developed by Fugl-Meyer, Bränholm, and Fugl-Meyer (1991) to help capture individual study participants' perspectives on life satisfaction, and it covers ten items. The numerical rating scale for responses in the questionnaire used for this study was complemented by an equivalent graphical face scale (Figure 1). The seven-point scale gave the option for the participants to express themselves to be “very dissatisfied,” “moderately dissatisfied,” “slightly dissatisfied,” “neutral,” “slightly satisfied,” “moderately satisfied,” or “very satisfied” for each of the ten specific life domains inquired about in the questionnaire. There are no specific norms developed regarding LiSat, and in this study the item scores for each participating individual are presented separately, representing these individuals' perceived satisfaction with different domains of life on a scale of one (“very dissatisfied”) to seven (“very satisfied”).

Figure 1

Graphical (face) scale used in LiSat questionnaire.

Figure 1

Graphical (face) scale used in LiSat questionnaire.

The questionnaire used to deepen the understanding of the study participants' informal and formal social networks was drawn from a Swedish translation of the Australian Support Interview Guide (SIG, 2000). This systematic guide is aimed at helping the interviewer to better capture interviewees' descriptions and perceptions of their networks and of their encounters with those included in these networks, and to determine the density of their contacts to gain a better understanding of the support provided to the interviewees. No specific norms, again, are available for this tool, which was first used to help structure and deepen interviews with individuals with ID in an Australian study in which it was found to be useful as an information-gathering tool (Llewellyn & McConnell, 2002).

Analysis

All data were analyzed on an individual level and treated as descriptive only. It was not possible to carry out either group analysis or comparisons for the present purposes. First, the data from LiSat were collated for each study participant, after which the transcripts from the interviews were reviewed and analyzed to identify possible explanations for the different statements obtained through LiSat, focusing on what each study participant described as constituting their sources of well-being and life satisfaction. From this process, different narratives by the participants emerged, which helped bring about a deeper understanding of the LiSat results. Subsequently, the data from SIG were analyzed for each individual and results were then used to further the understanding of the participants' descriptions of their networks. In the presentation of the results below, similarities and differences in the participants' narratives are highlighted. Findings that reveal a common perspective on an issue are put forward, while individual narratives that highlight a new perspective or diverge from those of other study participants are discussed as well, in order to present different perspectives on variables that have contributed to processes of inclusion and exclusion.

The results from LiSat, the interviews, and SIG were then categorized for each individual and grouped together under different headings that reflected important themes, patterns, and distinctive characteristics in the young adults' narratives. Finally, the findings were analyzed in light of different theoretical perspectives. The three perspectives used here were chosen to help deepen the understanding of the participants' descriptions and better comprehend their experience of exclusionary and inclusionary processes in everyday life. “Resilience” is used as a global term for describing a process whereby people bounce back from adversity and go on with their lives; in a nutshell, it refers to the ability to withstand or recover from difficult conditions (Goward & Gething, 2005). It is, however, not to be understood as the polar opposite of risk. A resilient person can be conceptualized as someone who has experienced adversity and not only survived it but become hardier in the process (Rutter, 2001). In the analysis below, the term is used together with theoretical concepts like empowerment and identity (see Finch & Mason, 1993; Neath & Schriner, 1998).

Ethical Considerations

The study methods were approved by the Regional Ethical Review Board in Gothenburg, Sweden. Given the fact that the interview sample was relatively small and all the participants came from one, fairly narrowly defined region in the country, the data on the participants is described in a manner aimed at preserving confidentiality. All interviewee names have been changed, and situations that could be perceived as identifying have been omitted from the presentation, along with all names of localities and other such potential identifiers.

Results

The interview quotations below were chosen to highlight the study participants' reasoning and to point out events, phenomena, and/or processes illustrating their perceptions. Digressions from the subject have been removed, and omissions are indicated by ellipses. In translating the quotes from their original Swedish into English, particular care was exercised to preserve the original character and content of the interviewed young adults' own words.

Well-Being and Satisfaction With Everyday Life

Judging from the results obtained from LiSat, the interviewed young Swedish adults perceived themselves to be satisfied with their everyday lives and well-being in general. Looking at the results for each participant across the different life domains covered by the questionnaire, some areas and dimension of everyday life and well-being nevertheless seemed to be experienced as less satisfactory than others, as shown in Table 2, which shows the distribution of the individual LiSat scores.

Table 2

LiSat Questionnaire: Study Participants' Perceived Life Satisfaction by Area of Everyday Life/Well-Being on a Scale of 1 to 7

LiSat Questionnaire: Study Participants' Perceived Life Satisfaction by Area of Everyday Life/Well-Being on a Scale of 1 to 7
LiSat Questionnaire: Study Participants' Perceived Life Satisfaction by Area of Everyday Life/Well-Being on a Scale of 1 to 7

Most of the study participants, in other words, felt satisfied with their well-being in general. Three of the participants, Jonas, Jennifer, and Julia, who were, incidentally, siblings, rated their well-being below the average in this study. Of them, the two sisters Jennifer and Julia reported themselves overall clearly less satisfied with their well-being than the other study participants. As Table 2 shows, both Jennifer and Julia were notably dissatisfied with their psychological and general well-being, while Jennifer also indicated herself to be moderately dissatisfied with her physical well-being and Julia reported her contacts with her family to constitute one of the most negatively experienced areas in her life.

The family as a source of dissatisfaction with life

In her interview statements, Julia described herself to be dissatisfied with her contacts with her family mostly owing to her relationship with her parents. She explained that her upbringing had been hard and that she had been frequently beaten by her parents. Moreover, she had had to take on an adult's responsibility for her siblings from about age five on. At the time of the interviews, she still perceived herself to be an “extra mother” for her siblings. Julia's siblings Jennifer and Jonas described her as the one who cared for and took responsibility for the others in the family.

Julia further described that some of her siblings had tried to commit suicide. On such occasions her parents had always called up Julia to ask her for help. Julia indeed felt that the parents and most of her siblings demanded her to do things for them. It was for this reason that Julia considered her sense of well-being to be mostly affected by her relationships with her family members. Accordingly, Julia ranked her satisfaction with her contact with her family to be low, stating that:

It's hard for me; I can't be one hundred percent all the time. I feel like I'm a mother [to my siblings and my parents] all the time, or a teacher.

According to Julia, also she herself had tried to commit suicide several times while in her teens and late twenties. The last time she had done so she had been admitted to a psychiatric ward, where the professionals had told her to avoid meeting her family members. At the time of the interviews, she still stayed away from her family, although she had kept in contact with one of her siblings. Nevertheless, she perceived herself unable to talk about her feelings even with this sibling. In contrast to how Julia perceived her relationships with her family members, however, she liked being at her work and interacting with the others staying at her housing facility:

There I can be the Julia that I want to be: to be able to laugh a lot … to be together with the others, and when we sing karaoke and are so bad at it … we always have so much fun.

Julia's statement can be interpreted as indicating that her exposure to adversity during her upbringing had nevertheless enabled her to build resilience. This was manifested in her ability to create social contacts with people with whom she could interact without them demanding care or support from her. In other words, Julia's description can be understood in terms of empowerment. Her expressions indicate a need to be able to influence the sort of support that she believed she needed. Her taking control of her life by choosing what to do and with whom can thus be understood as a process of resilience: it results in a form of acquired power, of both having control over and being able to influence one's own situation.

The family as a source of life satisfaction

Most of the other study participants, however, evaluated their contacts with their families positively (Table 2). Adam, for example, rated his satisfaction with his contact with his family with a score of 7 out of 7. Adam's overall satisfaction with this dimension of his everyday life was also confirmed in his interviews where he described his parents as supportive and caring. The other participants experienced their families in similar terms: in their interviews, those who rated their satisfaction with their families the highest also spoke of their parents as caring and supportive individuals.

Another theme that emerged in the case of those describing their families in positive terms was that parents had helped the participants to develop their independence and autonomy. Gustav, for instance, reflected about his mother as follows:

Most people hide their children if they have a disability…. But our mother didn't do that. If we did something wrong we had to deal with it ourselves. Our mother did not interfere…. She let us test a lot of things. I know many others whose parents didn't allow them to do so because they [the children] had a disability. But I've been able to test my limits, what I can do and what I can't. Like do martial arts. Some people [with ID] aren't allowed to try out martial arts.

Gustav's statement can be understood as telling of his inclusion into the society. The participants' satisfaction with their families was, however, also expressed in terms of close contacts with the parents. Pernilla, for example, told that she had “a very close relationship with my mother,” going on to describe what this “being close” meant to her:

[I]t's like we never argue. Some think that it sounds strange as there is probably always something one can argue about. But we don't argue, although there can be small things sometimes that can come between a mother and a daughter…. We have it good, we are like best of friends or something like that.

Such descriptions of one's family often also included a mention of tight family bonds, with study participants expressing a feeling that their families were strong and resilient. The participants also reported spending much time with their families. Gustav, for instance, stated that “[w]e are doing a lot of things together, all of us in the family; we are very close.” Pernilla, too, noted that “I am spending a lot of time together with my parents; they mean a lot to me.”

Statements like these indicate that the study participants' family settings were resilient, with the family being a place for most of them where they could become empowered and helped towards inclusion. Similar experiences of empowerment also characterized the young adults' descriptions of their relationships with their friends.

Friends and leisure time as a source of life satisfaction

Quality-of-life studies usually stress the importance of friendships (see McConkey, 2005), and, not surprisingly, the participants in this study rated friends and leisure time as the two domains with which they were most satisfied (Table 2). Gustav and Gunilla, for instance, both rated these domains with the highest score (7 out of 7) on the LiSat questionnaire. Their descriptions of their everyday life in the interviews confirmed their enjoyment of their leisure time and of their association with friends. At the same time, the interviews and the results from SIG revealed their contacts with friends and their leisure time to be very different. Gunilla stated that she had just one best friend whom she was in the habit of meeting, whereas Gustav reported having more close friends and a very active leisure time, with sports training activities almost every day. According to Gustav, sports for him were “like an occupation, as I am not able to do other things. I don't go to parties and things like that.”

Analysis of the narratives gleaned from the participant interviews revealed similar differences among other participants. Even when the participants rated friends and leisure time as the areas with which they felt satisfied, the interviews brought to light differences in how leisure time was spent, what the company of friends actually consisted of, and how many friends there in fact were. Jonas, for example, stated that he liked to play music instruments and sing, and that he had recently joined a theater group, which all meant daily rehearsals for him. Bodil, on the other hand, reported that she had no specific leisure activity and that she met her friends only on occasion.

Networks

The young adults participating in this study described their networks to include not just siblings, parents, and relatives, but also peers and various professionals such as social service and support workers, current and former teachers, and people met at a workplace. The results from SIG give a more detailed picture of the participants' networks, as shown in Table 3.

Table 3

Study Participants' Descriptions of Their Networks in Interviews Relying on SIG: Number of Individuals Included by Type of Contact

Study Participants' Descriptions of Their Networks in Interviews Relying on SIG: Number of Individuals Included by Type of Contact
Study Participants' Descriptions of Their Networks in Interviews Relying on SIG: Number of Individuals Included by Type of Contact

The young adults had met some of the professionals identified as part of their networks in more formal contexts, but had kept in contact with them even afterwards. Others were practitioners who continued to work with the study participants in their everyday lives, but who were nevertheless described as belonging to their informal networks. The same phenomenon, the inclusion of professionals in one's personal network, has also been reported in earlier studies in the area (Gustavsson, 1998; McConkey, 2005).

Based on the results obtained using SIG, the participants seemed to include only very few friends in their network who were of the same age or younger than they themselves. Gustav, for example, described his network as follows:

There are three there who are of my own age. The others, they are older. I hang out with old people more than young people because they can teach me much more than the young, and they understand my disability better than the younger ones…. And they don't reject me because of my disability…. I spend more time with adults because those who are my own age reject me…. They [the “adults”] accept that I have a disability, but the young ones don't. They just want to loiter around and be tough and start fights.

The results from the interviews and SIG reveal the participants' experience of their networks to be one of inclusion. The individuals the young adults considered to be part of their networks were ones that they reported as liking, with little or no regard given to either age and the kind of the relationship that was in question (professional/personal, etc.). Gunilla, for example, considered her teacher as part of her informal network, explaining that:

I like her, she understands me when I talk to her. … I can talk to her about everything; she understands.

Earlier studies (Booth & Booth, 1998; McConkey, 2005) have discovered people with ID to have few peers in their networks, which was also in accordance with the findings from this study. Three of the interviewed young adults nominated no peers as friends.

Based on the results from SIG, the frequency of contacts with those in one's informal network varied among the participants. Five of the young adults reported meeting with their friends in their informal network once a week or more often. Contact with those in one's personal network could also be maintained by phone, e-mail, or other Web-based social media. This is in accordance with the findings from earlier studies that show the frequency of contact and the amount of time spent with those in one's informal network to be less than expected (e.g., McConkey, 2005).

Identity and Self-Perception

To understand the young adults' perceptions of their everyday life, it is of interest to examine how they describe and perceive themselves. Identity is a term used to refer to an individual persona or the collective identity of a group of persons; it refers to the constructs that define individuality and sense of self (French Gilson & Depoy, 2000). A key challenge for all young people is to develop an independent and confident identity. In the interviews for this study, the young adults frequently compared themselves with others, as for instance Gustav in the following quote:

Right; when the others go to a party, but you're not into it. You're not ready for that yet. You don't have the head for it; your mind isn't what it should be, but your body is normal, and they've got a problem with that…. You have other interests since you're less. For you just aren't—your body is just like those of the others, but your brain is not; you don't manage as much and so you shouldn't even try…. So if you can't manage that [what others do like going to parties], and you can see that the difference is so big, so then you don't get to meet people like the others and it just goes all wrong and then it's better for you that you just take it at your own pace.

As Gustav's comments show, he clearly perceived himself to be different from others. In his interview, he also spoke of the disabilities in his family, stating that the only thing he wanted to have differently in his everyday life was that “these sicknesses go away; it's been difficult, this handicap of ours.” Gustav described how the family members often spoke together about their disability and that they all experienced it as difficult to deal with. Reflecting on the question of what he perceived as especially hard, he considered it to be interaction with others:

[W]hen they start talking to you they notice that something's not right. I can't read or write, and then they notice that you're ill. There's something about you that's not right. And they'll start being afraid of you and avoiding you. … But if you don't talk, they won't realize it. Like my other friends: they [the others] don't know if they are ill, have disabilities. But then it's harder for them to connect with others. So you need to work on your ability to understand how you are.

Just like Gustav, also the other young adults described themselves as used to feeling and being perceived as different in their everyday encounters and dealings with others. This adaptation of which they all spoke created an identity for them as outsiders in the society and in their interactions with others. The outsider perspective, or the “excluded identity” as Ramcharan, Roberts, Grant, and Borland (1997) have described it, again induced the young adults to describe themselves as being separated from the mainstream. All of the participants either attended special schools or classes, participated in organized daily activities limited to individuals with ID, or, when in the labor market, worked in special positions or were unemployed (Table 1). Such everyday life circumstances might then have affected their sense of identity as individuals without access to ordinary jobs or schools, contributing to their perception of themselves as different and excluded. This negative perspective on disability and its consequences was always present in the participants' reflections about their everyday life.

Special schools and the identity as different

The perspective of being different was particularly evident in the descriptions of the study participants who attended special schools. Most of these participants stated that they did not fully understand why they were enrolled in such schools, and they often viewed this circumstance in negative terms. Pernilla, for example, expressed as her opinion that:

I manage quite well. I may have dyslexia so I may do things a little more slowly and I need more time, but otherwise there are no big problems.

Her own perception was that, overall, she managed her life and learning tasks quite well, for which reason she failed to understand why she had been placed in a special school:

It's a little strange, isn't it, that he [the principal] sent me to the special school, just because my mom had gone to a special school … and my dad.

In the same way, most of the participants were under the impression that it had been the professionals, teachers, and principals in the regular schools they had first attended that had made the decision to enroll them in a special school, stating, moreover, that they had done so without talking to them or their parents first. The participants considered their attendance at a special, segregated school to have affected them negatively, in reinforcing their social exclusion and thereby contributing to the construction of an identity of “disability” for them.

At the same time, however, Pernilla herself concluded her reflections on the issue by stating that it nevertheless had probably been best for her that she joined a special school: in an ordinary school she might have had a harder time concentrating, and she probably would not have received the same amount of help as the class sizes would have been much bigger. Such ambivalence, which was also typical of the other participants, could be interpreted as expressing worry and anxiety about the unknown ordinary school. The desire to be part of what one sees as the context where all the others are, while at the same time seeing it as potentially helpful to be in a context where one can receive support, can be understood as reflecting a process of stigmatization (Goffman, 1990). Stigmatization occurs when the identity of the person as defined by the environment is integrated in the individual's self-concept and, as in the present case, the young adults “become their disability”: they become defined by their impairment. The feeling of being stigmatized and the perception of being excluded could then be one factor explaining why the study participants, overall, rated their sense of psychological well-being as poorer than their well-being in, and feelings about, other life domains in the LiSat questionnaire (Table 2).

Discussion

The aim of this exploratory study was to examine the everyday life experiences of young adults with ID who had parents with similar disability, focusing on processes of inclusion and exclusion. In order to capture the study participants' descriptions of such processes, a combination of different methods was used to examine their subjective perception of life satisfaction, their personal networks, and their sense of identity. While the results differed sometimes even notably among the individuals participating in the study, leisure time and contact with friends were overall perceived to be domains of life with which one was satisfied (Table 2). As Table 2 shows, one's contact with family members was also, for most participants, something with which they perceived themselves to be satisfied, some individual exceptions like Julia notwithstanding.

Most of the participants perceived their family to provide them with resources that contributed to what can be analyzed as the development of resilience. Rutter (2001) has suggested the key protective factors fostering resilience in children to be personal attributes such as positive self-image and ability to make contacts with others, presence of caring adults, and good social relationships. In their literature review, McMurray, Connolly, Preston-Shoot, and Wigley (2008), again, underline that the term resilience refers not simply to a single phenomenon but, rather, to behaviors and outcomes in distinct circumstances. Children said to be resilient are those who, despite their high-risk status, do better than expected, those who do well in the face of chronic stress, and those who adapt positively after extreme trauma. Resilience is a process that includes interaction with others as well as an outcome for the individual (Grover, 2005). The descriptions that the participants in this study provided of their families yield important insights into the development of resilience in these families, a topic that needs further exploration in light of the context-specific nature of resilience. Resilience is about one's ability to cope with life and social relationships where different factors can promote and sustain resilience in different circumstances and at different points in the course of childhood. It involves both social power and personal power, and can be understood as a process of empowerment (see Neath & Schriner, 1998). This, in turn, entails an ability to see it as possible to influence one's life situation and make choices of one's own. Research on children of parents with ID has, moreover, found the self-perception of these children to be positively affected when they have possibilities to adapt and choose different roles and functions in the family (e.g., Perkins et al., 2002). This has been taken to indicate that resilience is related to one's ability to form different identities. Thus, for children and young adults like those participating in this study, it would, accordingly, be important to be able to live in an inclusive environment that makes this kind of empowerment possible while supporting their independence.

In their interviews, the participants in this study indeed put much value on their own autonomy and independence. This became obvious most immediately from their frequent reflections about their possibilities to make their own decisions. For young adults like them, the empowerment can then, quite concretely, be about having more control over the social services they depend on. It should, however, also be about being listened to and given better information about factors and circumstances that influence their lives, in order to help them build better capacity to make their own choices.

The study participants had, however, experienced difficulties and challenges in their contacts with others. In their reflections during the interviews, they identified themselves as different from others. At the same time, they also questioned decisions made by others, such as the one to place them in a special school. As Priestley (1999) has noted, self-knowledge and the act of “speaking about ourselves” contribute to identity formation, and in the descriptions of the participants their speaking about themselves included the perspective of being unlike others. This identity as disabled contributes to a process of stigmatization (Goffman, 1990), which in turn is likely to foster exclusion.

Overall, however, most of the participants perceived themselves as satisfied with their friendships, leisure time, and family. The majority of the participants considered their family to be a resource helping what could be observed as their development of resilience and their empowerment. Individuals described by the participants as part of their informal networks also contributed to the same development of resilience and empowerment. These informal networks, which could be described as inclusive, were typically composed of a few friends, certain other individuals of dissimilar age, and occasionally professionals. While it was typical of the participants to describe themselves as outsiders and excluded from others, the stigmatization and exclusionary processes that they were subjected to were especially reflected clearly in their narratives about the special schools they were attending.

This study has several limitations. First and foremost, its sample size is small, which affected the age distribution attained. Although most of the study participants were aged between 18 and 25, two of the participants were 30 or above. Secondly, each participant was met and spoken with only twice. A possibility for follow-up interviews with the study participants would have added to the value of the study. Third, there was no possibility to confirm directly that all of the parents had ID; instead, for this factor, the study had to rely on the professionals who recruited the participants and their assurance that they knew the young adults and their parents in question very well.

Most of the study participants reported maintaining close and for them, important, contact with their family. It might therefore be of particular importance to create possibilities for continuing support for families of young adults with ID, to help make it possible for parents to provide a supportive context for these adults. Collaboration among support workers from different agencies seems crucial for the ability to provide adequate support for these two target groups. This would also enable a better understanding of the everyday life of young adults with ID, including those who have been raised by parents who also have ID. Research in the area will benefit from studies that can follow these young adults over time in their own environment. To be able to better identify the contribution that different support systems can make to the quality of their lives, comparative studies on young adults from different countries with differing social welfare systems are needed, in order to augment our still limited knowledge about the lives of young adults whose parents also have ID.

Acknowledgments

The author would like to thank all those who participated in this study as well as Lena Palm Samuelsdotter for her assistance in conducting the interviews. The study was funded by grants from Wilhelm and Martina Lundgrens' Foundation and by the Committee for Mental and Physical Disabilities of the Region Västra Götaland, Sweden.

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Author notes

Editor-in-Charge: Glenn T. Fujiura

Authors:

Mikaela Starke (e-mail: mikaela.starke@socwork.gu.se), Department of Social Work, Box 720, University of Gothenburg, SE-405 30 Gothenburg, Sweden.