Coming of age can be challenging for people with mild intellectual disabilities, who remain more dependent on their families than their typically developing peers. The purpose of this study was to determine how young adults with mild intellectual disabilities experience the transition into adulthood within family settings. The research was conducted in Poland. Fifteen young adults with mild intellectual disabilities participated in semi-structured interviews. Since this study relied on grounded theory, which prescribes that initial analytical results be validated against and modulated by the information acquired in due course (Glaser et al., 1968), data collection and analysis were performed mostly in parallel rather than in a linear sequence. Reflexive thematic analysis was employed to identify patterns of meaning in the data (Braun & Clarke, 2006, 2020). The starting point for this study is the fact that individuals with disabilities heavily depend on their families for support and comprehensive assistance even as they undergo adolescence, which is a period specifically associated with a struggle for autonomy. The findings of this study contribute to the understanding of how young people with intellectual disabilities transition into adulthood.
The transition from childhood to adulthood is one of the most significant and dynamic periods in an individual’s life. Qualities such as independence, self-sufficiency, and responsibility play a crucial role in defining adulthood and shaping an adult identity. However, not everybody reaches full autonomy, remaining at least partially dependent on others for the rest of their lives. Reliance on immediate family members is particularly prominent among people with intellectual disabilities (Deakin et al., 2018).
This article sets out to determine how young adults with mild intellectual disabilities experience the process of coming of age under parental control while living at the family home.
Theoretical Framework
This study focuses on individuals with mild intellectual disabilities. Mild intellectual disabilities refer to people with an IQ between 50 and 69 on the Wechsler scale. These individuals often struggle with learning and socialization, but with the right support, they can master practical life skills and lead relatively independent lives. Approximately 85% of people with intellectual disabilities are classified as having mild intellectual disabilities (Finke & Ryan-Krause, 2021). Unlike intellectual disabilities, learning disabilities are a group of neurological disorders that selectively impair an individual’s ability to acquire, process, and use information effectively. They can affect various areas of learning, including reading (dyslexia), writing (dysgraphia), and mathematics (dyscalculia). However, individuals with learning disabilities typically demonstrate average or above-average intellectual abilities (Finke & Ryan-Krause, 2021).
The category of ‘adulthood’ is one of the essential notions in the study. It also serves as the central axis of analysis and is defined as a social construct. In traditional terms, coming of age is predominantly tied to the adoption of social roles, such as the completion of formal education, marriage, and parenthood (Mortimer et al., 2005). However, counter to this traditional outlook, adolescents worldwide deliberately postpone orrefuse to acknowledge their adulthood (Billari, 2004). Research conducted to date demonstrates that, in Western cultures, traditional social roles may have been replaced by other markers of adulthood, such as ‘independent decision-making,’ ‘accountability for one’s actions,’ and ‘confidence in one’s autonomy’ (Arnett, 1997, 2000; Nelson & Barry, 2005). These character traits are integral to achieving self-determination (Field et al., 1998). An individual capable of self-determination makes life choices without undue external influence (Wehmeyer & Bolding, 2001). Hence, self-determination is often cited as an essential and desirable outcome of the transition into adulthood, particularly for individuals with intellectual disabilities (Field et al., 1998; Mitchell, 2012).
It is assumed in the study that identity, alongside adulthood, is a complex social construct that is not represented by a point in time but a process. The said process may be depicted as a narrative, i.e., a continuously unfolding story featuring novel characters and turning points, which can be understood in discursive terms (Galvin, 2005; Harter et al., 2006; Holstein & Gubrium, 2000). Identity narratives emerge from day-to-day practices and interactions, and the very process of constructing one’s story is, by and large, an interactive project informed by relationships with others, especially those in the immediate environment (Ashcraft & Mumby, 2004; Rapley, 2004). Families are, therefore, a rich source of insights into the construction of individual identities.
Existing Research
Drawing on available research, the transition from childhood to adulthood marks a problematic period not only for adolescents with intellectual disabilities but also for their entire immediate environment (cf. Forte et al., 2011; Grey et al., 2018). This is particularly relevant to parents of people with disabilities, who guide their children through the transition to adulthood (Beart et al., 2005; Morris, 2004). Parents often struggle to determine their role in this process (Curryer et al., 2015; Saaltink et al., 2012). Some are overprotective despite their child’s need to experiment and make independent decisions, which are crucial for normal development and maturation (Seale et al., 2013; Wilkinson et al., 2015) This is especially true for parents of adolescents with intellectual disabilities. These parents may reduce their children’s optimal exposure to risk, potentially contributing to lower self-esteem and self-determination in their children (Kishi et al., 1988). The combination of these factors with long-standing social prejudice against intellectual disabilities may adversely affect young people’s ability to develop adult identities (Wilkinson et al., 2015). Since positive self-esteem is extremely important for mental health, young adults with intellectual disabilities should be encouraged to feel comfortable during the transition to adulthood. Gill (1997) noted that many of these individuals struggle with feelings of alienation within their families, undermining a self-acceptance that is largely dependent on how friends and family members respond to disabilities. In contrast, Taylor (2008) found that disabilities are neither stigmatizing nor problematic, and the affected individuals’ identities rely rather on the relationships with their closest ones than on labels and responses from outside their family and social network.
Research Background
In Poland, most people with disabilities live with families under a predominantly traditional family model (Krause et al., 2010). Those families receive financial, social, and emotional support. Key funding includes caregiving allowances, caregiver benefits, special care allowances, family allowance supplements, and access to social welfare and counselling services. Currently, a discussion is underway regarding personal assistance law, which aims to ensure that persons with disabilities have greater opportunities for self-determination and independence in their lives. It can be thus concluded that both cultural and institutional factors account for the close dependence of a vast majority of people with intellectual disabilities in Poland on families of origin throughout their lives (86% of adults with intellectual disabilities live with their parents and/or siblings) (Krause et al., 2010). As an important side note, it is worth pointing out that the cultural family model in Poland is deeply rooted in patriarchal values, which means that mothers play a leading role in caring for children with disabilities (Sałkowska, 2010). In a study of Polish families, Cytowska (2012) established that parents of adults with intellectual disabilities are likely to underrate their child’s social competencies. This circumstance only reinforces the children’s dependence. It makes it more difficult for them to separate from their family of origin, to earn their own autonomous identity, to make individual decisions, or to manage their lives (Goffman, 1963; Żyta, 2018).
Rationale for the Research
Although available literature offers accounts of how young people with intellectual disabilities regard and experience adulthood, their identity transitions require further clarification and exploration (Curryer et al., 2018; Curryer et al., 2020; Midjo & Aune, 2016; Salt et al., 2019). Empirical studies conducted in various countries and cultural contexts, including Poland, point to the phenomenon of delayed adulthood, that is, postponing developmental tasks and social roles associated with adulthood (Arnett, 2000; Brzezińska et al., 2012; Macek et al., 2007; Negru, 2012; Ormston et al., 2017). This is also true for the subjective marker of adulthood, which is the development of individual identity. However, research on identity development generally disregards minority groups within society, such as persons with intellectual disabilities (Bond, 2024; Cerezo et al., 2020). This study also helps fill an existing gap by using a narrative lens to highlight the importance of daily interactions and activities in the joint effort of identity development within a family (Ferguson, 2001; Galvin, 2005; Harter et al., 2006). Although this topic has been extensively discussed in the available scientific literature, it remains largely underinvestigated in Central and Eastern Europe. For this precise reason, this research sets out to provide missing information on the situation of people with intellectual disabilities living in Poland.
The purpose of the research was to analyze the processual changes in families of origin as individuals with intellectual disabilities come of age. The following research question was posed: How do people with intellectual disabilities experience the transition to adulthood, and how are these experiences defined, interpreted, understood, and expressed in daily life? In light of the above considerations, the research focused on the daily activities and practices of people with intellectual disabilities in their interactions with family members.
Method
Research Design
Research efforts focused on the activities and daily practices of individuals with intellectual disabilities and their families concerning the children’s transition to adulthood. Since this study relied on grounded theory, which prescribes that initial analytical results be validated against and modulated by the information acquired in due course (Glaser et al., 1968), data collection and analysis were performed mostly in parallel rather than in a linear sequence. Reflexive thematic analysis was employed to identify patterns of meaning in the data (Braun & Clarke, 2006, 2020). The starting point for this study was the fact that individuals with disabilities heavily depend on their families for support and comprehensive assistance even as they undergo adolescence, which is a period specifically associated with a struggle for autonomy (Midjo & Aune, 2016; Salt et al., 2019). The analysis was conducted retrospectively as part of a larger research project focused on the situation of people with intellectual disabilities within the context of family life.
Recruitment
Recruitment for this study was conducted in partnership with local social welfare centres and institutions in the nonprofit sector. The inclusion criteria for people with intellectual disabilities were as follows: (a) mild intellectual disabilities; (b) age between 18 and 29 years (the time range conventionally corresponding to so-called early adulthood); (c) consent to participate in the study expressed by the participants (persons with intellectual disabilities).
Twenty-four families who were eligible for inclusion in the study received an email invitation to participate in the study. The information sent to the families included full study details and a profile of the sought candidates, accompanied by infographics tailored to the level of comprehension of individuals with intellectual disabilities. The study presentation included an informed consent form addressed to the study participants, as well as a brief questionnaire that inquired about the age and gender of individuals with intellectual disabilities and family demographics, including parents’ age, education level, and employment status. Ultimately, fifteen families joined the study. Nine families refused to participate. Five refusals were due to personal reasons, three persons declined out of health concerns and unavailability for interviews, and one person failed to provide any reason.
The fifteen individuals with mild intellectual disabilities who joined the study included eight women and seven men. The mean age of the participants was nearly 22. The age of the parents of the participants ranged from 37 to 62 (the mean age fell below 50). Five respondents participated in professional activities, while five still studied. The remaining individuals neither engaged in professional activities nor attended school. As for the parents, six mothers were employed, and six did not pursue a professional career. All fathers were professionally active. Four parents had higher education (three mothers and one father), eleven had obtained secondary education (six mothers and five fathers), and seven parents had vocational training (three mothers and four fathers).
Data Collection
Semi-structured interviews were conducted with all individuals. The interviews lasted between 45 and 90 min and were conducted at locations chosen by the respondents. The most popular location was either at the participant’s home or their place of work. It was less frequent for the participants to designate a different venue (a park and a sports facility), which happened in only two cases. A total of fifteen interviews were completed between June 2024 and September 2025. While every interview started in a similar way, with the introduction of the researcher and a presentation of the most salient study details, it was imperative to adapt the course of individual interviews to the needs of the respondents, affording them freedom of expression. Each interview began with an open question concerning the participants’ life situation and daily interactions within the family. It was confirmed at the end of each interview whether all topics deemed necessary by the participant had been discussed. In addition, to prevent overlooking relevant themes, participants were offered some degree of control over the direction of the interview. Whenever the participants departed from the main topic of the interview, they were given the freedom of expression. This setup enabled them to speak in their own words on topics of their choice.
Data Analysis
All interviews were audiotaped and transcribed verbatim. Following transcription, themes were established by means of reflexive thematic analysis, as specified by Braun and Clarke (2006, 2020). The researcher reviewed the transcript, re-reading it and listening attentively while taking draft notes. Relevant elements within the document were then coded using NVivo 12 software. Key subthemes and, thus, the main themes were identified after coding five transcribed interviews.
Further transcriptions were then coded to validate the results of this initial analysis and to scour for any new concepts. This process was repeated until the codes and themes were considered exhaustive of all fifteen transcriptions. The analysis used a multi-stage process of open and axial coding guided by the constant comparative method (Strauss & Corbin, 1990). Categories and themes were developed based on an inductive approach to data analysis as prescribed by grounded theory. According to Charmaz’s (2006) grounded theory, there are two stages of coding: initial coding, which involves data analysis to understand the participants’ meanings, and focused coding, which selects for the most practical or relevant codes to represent the themes emerging from the data. The initial coding tree was created using themes that were mapped as the key concepts in the interviews. The coded data helped distinguish the main themes, following a protocol outlined in the results section. The researcher could attend to the respective coding and transcription stages at his discretion to compare the identified codes and themes.
To explain the research topic, a core category was distinguished according to Charmaz’s account of grounded theory. Subsequent study cases were discerned by theoretical sampling by means of the constant comparison method. Within the framework of theoretical sampling, the initial design of data acquisition, coding, and analysis may be extended by a simultaneous collection of additional data specified by the researcher (Glaser, 1978; Strauss & Corbin, 1990). Research data were obtained using the continuous comparison method, which involves searching for both very different and relatively similar cases to capture the maximum number of conditions that differentiate the incidence and interrelationships of categories in the participants’ responses (Charmaz, 2006; Glaser, 1978). In particular, all data was compared to emerging codes and arranged into categories (Creswell, 2013). This allowed the inductive process of data analysis to be systematic and rigorous.
Case selection was only concluded once theoretical saturation was achieved, i.e., once subsequent cases confirmed prior analytical findings (Glaser, 1978). The lead researcher prepared a codebook to be followed by a panel of assistant researchers. Each panel member was assigned the same portion of data for coding. The codebook, however, was open, and each assistant researcher could generate additional codes. The lead researcher ultimately identified three main themes. The research was designed and conducted by the lead researcher, who is also the sole Author of the manuscript.
Study participants were invited to participate in the process of result validation at every research stage to enhance credibility (Braun & Clarke, 2013). Ultimately, the results were shared and discussed with a group of four study participants, who provided their consent for this form of extended involvement (McDonald & Stack, 2016; Northway et al., 2015).
The quotations used in the article (excerpts from participants’ interviews) substantiate the descriptions contained in the research findings section. Quotation selection was guided by coding density (i.e., the number of codes assigned to a given statement by the main and assistant researchers) and illustrative power (i.e., the ability to supplement the results of the analysis presented in the article). The article was designed to incorporate as many quotations from respective participants as possible.
Research Trustworthiness
The researcher directly carried out all study-related activities at all stages of the study. However, in order to increase the credibility of the research findings, other researchers were involved in research triangulation. They facilitated research and analysis and provided counselling. Triangulation included collaboration and discussion, particularly in the form of writing and sharing research notes about the interrelations between analytical codes and categories. Coding consistency between the lead researcher and assistant researchers was assessed using the NVivo Coding Comparison Query. Results confirmed a high level of consistency (87%). Discussions around coding further informed the data coding process, making it possible to clarify previously generated codes, categories, and themes.
Research Ethics
Ethical approval was obtained from the research ethics committee at the lead researcher’s institution prior to the commencement of the study. The work described was carried out in accordance with The Code of Ethics of the World Medical Association (Declaration of Helsinki) for experiments involving humans. The researcher was aware of certain research-specific challenges from the outset and prioritized ethical considerations. The researcher’s competencies and credentials were one way of ensuring research integrity. The researcher understood the problems and limitations associated with intellectual disabilities and their implications for the research process, including the collection and interpretation of data obtained from young adults with intellectual disabilities. These constraints were mitigated by the use of accessible language (suitable for the level of understanding of the participants) and careful question design.
All study participants were informed orally and in writing about the research design and their rights, including the right to withdraw from the study at any time. Before the interview, participants were presented with informed consent and assent forms, which notified them that all participation was voluntary and that they could stop at any time or skip any questions for any reason. All respondents gave consent for their data to be used for publication. It was also ensured that the data was anonymized, requiring all names, surnames, proper names, and other details to be deleted or replaced with other data that rendered the identification of the participants impossible. These activities were carried out by the researcher alone. Access by others to the previously collected information occurred only after anonymization and exclusively for scientific purposes with due diligence and utmost concern for the respondents’ welfare and in accordance with the practices set out in the code of professional ethics. Sensitive content of the interviews included possible involvement with social services and risk to self or children. A Distress and Safeguarding protocol was designed for the researcher to follow if any safeguarding concerns arose or if the participant became noticeably distressed at any point during the interview. No current safeguarding or risk issues presented themselves.
Results
The study findings were grouped under three themes: perceptions, negotiations, and preparatory work for change. The analysis of ‘perceptions’ uncovered the young people’s impression of how other family members perceived them. ‘Negotiations’ provided insight into how young people responded to what other family members thought of them. Finally, ‘preparatory work for change’ revealed a picture of the actions participants undertook to achieve a greater degree of autonomy. These themes were further described by subthemes (see Fig. 1).
Theme 1: Self-Perception of Intellectual Disability Within Family
In response to questions about relationships with family members, participants with intellectual disabilities were preoccupied with issues related to how their immediate environment treated them. The main focus of the study was the factors within the parent-child relationship that affect the respondents’ process of self-determination. During the analysis, two issues stood out most strongly. These were Parental overprotectiveness and Age-inappropriate treatment.
Overprotectiveness
As the respondents often indicated, they believed that their parents tended to be overprotective, which was associated with lower expectations and more leeway in the standards set for them by their caregivers:
“My parents, like all parents, want the best for me. I know this, and I can sense so much, but I think they worry too much about me and stand in my way too much. There is no way for me to go ahead with some things on my own, even though I could and would like to, but I just cannot have my way (…).”
The participants shared the conviction that how their parents regarded their children was associated with limited trust towards them, which is well reflected in the following quote:
“My parents tell me, ‘Sure, you’re allowed this or that.’ But when the time is ripe, they give me the red light, and they won’t have me do what they just said was completely fine with them, which raised no objections on their part whatsoever, and seemed to pose no problems at all (…).”
Similar observations regarding his parents’ stance towards him were voiced by another respondent, who indicated that his parents could not alleviate their fears about his disability in general, even though they wanted to help him become independent. In effect, they aggravated the respondent’s sense of fear and anxiety about living independently:
“Ever since I can remember, my parents have given me the freedom to try many things whenever I am ready, as I reach a certain age. I think that has been awesome. But they virtually keep me company all the time, too, and they keep an eye on me. Moreover, I can’t tell that they have let off supervising me with time. Well, and I don’t know if they would let me do it, if they would manage to leave me to my own devices completely so that I would live alone or, worse still, with someone, a girl. I love them, and they love me too, but I am afraid that they are so worried about me that they will give in to this (…).”
Age-Inappropriate Treatment
Apart from lowering expectations, young participants recounted being treated out of step with their age. In many cases, caregivers and siblings (both older and younger) perceived the participants as younger than their actual age. For many participants, being thus viewed and treated by loved ones negatively affected their self-perception. It often even became a source of frustration:
“My parents and even my siblings sometimes treat me as if I were still a small child. And even though I know what to do and how to do it, and I don’t even need any help whatsoever, because, after all, I’m of age now, they’re used to treating me this way all the same (…)”.
Another respondent put it this way:
“Sometimes, I am fed up with them treating me like this. It is annoying. They (my parents - Author’s note) are trying to help and protect me. They love me, and they do it out of love. That’s clear. But sometimes it feels like they want to kill me with kindness (…)”.
Young people with disabilities are sometimes treated in a way that can be described as dismissive, and their issues and problems are seen as trivial and insignificant. This can be a form of infantilization, evidenced by the following quote:
“Unfortunately, my parents often don’t take me or my problems seriously. Even though I’m an adult, they still treat me like a child (…)”.
The process of infantilization is also manifest in how the sexual needs of adolescents with intellectual disabilities in the family are downplayed and belittled. Sexuality is regarded, especially by caregivers, as a temporary and transient issue that evolves with development. This is indirectly borne out by the statements of people with disabilities themselves, according to whom parents repeatedly suppress their interest in sex and their sexuality:
“Upon asking my mother about various things related to adolescence, I sensed that she was so embarrassed that she didn’t know what to say to me. I think she preferred I wouldn’t ask her about it and somehow found out on my own from friends or TV. I’m not sure. But it was indeed difficult to talk about it with her (…)”.
Many young people described how they had reflected on their sexuality and gender identity for many years before they began to figure it out for themselves and better understand themselves and their needs:
“Well, at the end of the day, I found out about these affairs (sexuality-related - note by the Author). Actually, it was more from other people, but not at home. I wish I could have talked to my mother about it. She seemed not to have noticed any of this (…)”.
Theme 2: Negotiability of the Identity of Individuals with Intellectual Disabilities in Families
The research allowed us to determine what processes and practices are employed by people with intellectual disabilities in their attempts to build, sustain, and perpetuate their ‘self’ in the family system. The study findings suggest that people with intellectual disabilities assume one of four attitudes while negotiating their identity within the family: affirmation, reconciliation, confrontation, or rebellion. These attitudes form a spectrum, ranging from acceptance and appreciation to neutrality and reluctance.
Affirmation
The first attitude to be established is affirmation, denoting full acceptance of how the immediate environment perceives and treats a person with intellectual disabilities:
“You are asking how I feel and what I think about how my parents and sister treat me. I think it’s clear that I think highly of how they treat me (laughs - note by the Author). But seriously, they really take care of me and do their best to make me feel as good as possible. They don’t want to put me at risk of anything and are very concerned about me. To them, I have always been and will always be ‘their little boy’ (…)”.
Yet another respondent expressed this sentiment in the following words:
“My parents are what matters most to me, just as I am what matters most to them. That is why they pamper me as much as they can. And I repay them by trying to be the way they want me to be. This is our lasting bond, a tacit agreement so that everyone is content and happy (…)”.
It apparent reason behind the participants’ acceptance of how they were perceived and treated by their parents was a desire to maintain a sense of security and stability in their lives. A passage from the statement below captures this point well:
“Parents know what is good and what is not. They make me feel safe. I can keep calm and I never need to worry about anything (…)”.
Another likely explanation was loyalty towards the family, which prevented the participants from envisioning an alternative setup in their relationships with caregivers:
“Parents are parents. They know what is good for me and would never let me get hurt. They always help me. They are always there for me and support me. They are simply my world, and I am theirs (laughs - note by the Author). And nothing will ever change that (…)”.
Acceptance
In contrast to the individuals depicted above and the overarching absence of dissatisfaction, let alone rebellion, other respondents showed resignation to the realities of family life. This attitude resembled a kind of life fatalism regarding how they are perceived and treated by other family members:
“There is no use discussing any of this. They (parents - note by the Author) have the say in everything. This has always been the case, and nothing has changed. However, I am no longer a child. I might want to do things differently, in my way, but they won’t let me. They love me and want the best for me, and I get that. They are my parents, and I need to listen to them (…)”.
The individuals who represented this category tended to feel somewhat ‘incapacitated’ by and dependent on their caregivers. Nevertheless, they saw no alternative to their situation, a point aptly conveyed by the following quote from one of the participants:
“It’s the way it is, no matter how much I may disagree with it. After all, I told my mother I would have it another way than she opted for, that I have different tastes. However, I see no way out. I can’t help but agree with what she wants. After all, I live with her, and she sustains me (…)”.
In some instances, individuals with disabilities were overcome with a sense of powerlessness in the face of the existing dependency scheme prevalent in their families. However, they were also aware that it represented a cost borne by them in exchange for ‘creature comforts.’ As one of my respondents put it:
“I don’t have to do anything specific. My mother does things for me. This is convenient because I don’t have to worry about anything (…)”.
Confrontation
An attitude of confrontation, evinced by still other individuals with disabilities, stemmed from an additional resentment concerning the interaction patterns with their immediate environment. It further aggravated the awareness of a dependence already seen in the previously discussed approaches. The participants who sported such an attitude tended to speak out directly, making no secret of their dissatisfaction with the relationships in the family:
“I do tell my mother that I’m not going to do this or that (…) We have altercations because she always thinks she knows best what I can and should do, and, overall, she thinks she knows what I want better than I do myself. And the point, after all, is not for her to tell me all the time what to do as if I didn’t know any better, which I do. So there you have it, we quarrel over it sometimes (…)”.
The individuals with disabilities who represented this mindset were eager to openly assert their views about their treatment at the hands of their parents and siblings. What this meant for them was mainly verbal skirmishes and all manner of clashes that usually led to nothing more than an exchange of opinions:
“Well, we will argue from time to time because it’s probably the way things go in families, but at the end of the day, no one wants any harm. My parents have my back, and they love me very much, and that’s obvious, but I’m also grown up now, and I have my rights, so we will sometimes bicker about this or that, but then we clear the air, and soon we’re reconciled (…)”.
At times, participants also sought certain concessions from their environment or changes in how those around them treated them. They did so by contesting their caregivers’ actions either intermittently or for a prolonged period:
“When my mother told me that I had to walk around in this silly vest, I told her that it didn’t look pretty, wasn’t fashionable, and didn’t suit me. I made it clear to her that I didn’t like it. I repeatedly told her about it whenever she forced it on me, and on each occasion, she got angry with me, but I don’t like this vest (…). I wear it all the time because it’s warm, but I don’t like it, and that’s the bottom line. Maybe if I keep badgering her, she’ll finally buy me another one (…)”.
Although they expressed objections to their guardians’ treatment, they seemed to confine their dissatisfaction to declarations and the aforementioned verbal altercations. Thus, despite their apparent reluctance or dissatisfaction, they did not take action against their relatives, eventually succumbing to coercion from those closest to them, though not without irritation or disappointment:
“As I said, I disagree with my mother, and I tell her that often, and I will continue to do so whenever I don’t like something. But this is my mother, so I have to listen to her, even if I don’t like something about what she does. She’s my mom, and you have to listen to your parents, even when you’re already grown up or even an adult (…)”.
Rebellion
Only the most extreme type of attitude, rebellion, involved actions beyond the overt expression of dissatisfaction. It is only with a rebellious attitude that active measures were taken to counter how individuals with intellectual disabilities are perceived and treated:
“Hey, I won’t just wait for someone to hear me out or not. I don’t want to get in anyone’s way, but I also don’t like anyone barging into my personal affairs. Even if this applies to my parents, they also need to understand that I am an adult, and although we live together, I am an adult, and can decide for myself, and don’t need to ask anyone’s opinion (…)”.
This was spelt out in even more transparent and more explicit terms by another respondent:
“I’m not trying to be a people pleaser or anything like that. If it doesn’t suit me, I just do it my way and make no excuses to anyone. I am a grown-up, and I know what I am allowed to do and what I am not allowed to do. Parents are sometimes annoyed by this, but they have to accept it (…)”.
Although the participants were aware of their disability, they did not see this as a reason to agree to trade-offs in their relationships with those around them. On the contrary, any treatment by parents or caregivers that bore the hallmarks of infantilization, provided an odd instance of belittling, ignored them as fully entitled interaction partners, triggered a defiant attitude. They usually indulged in this urge through verbal squabble or poignant gestures of discontent, a sort of ‘disobedience’ (as one respondent expressed it):
“I don’t know if that’s the correct term, especially since I don’t think I’m doing anything wrong because I’m only defending myself in this way against too much care, as it were, from my parents (…). I will occasionally do something on purpose to show my true colours so that they know that I don’t like something, so that they (parents - note by the Author) know that I can do as I please and that they can’t just forbid me, that they just have to go along with it, even if it doesn’t suit them and they would like to do things differently (…)”.
Theme 3: Shifting the Balance of Family Relationships to Gain Autonomy
The analysis led to the conclusion that no specific actions were undertaken by the respondents who embraced the attitudes of affirmation or reconciliation. In contrast, confrontation or rebellion was a source of internal tensions, but also direct actions on the part of the participants with disabilities. These actions tended to align with one of three strategies: ‘showing off a “can-do” attitude,’ ‘adjusting others’ mistaken ideas,’ and ‘acting out of spite.’
Showing Off a ‘Can-Do’ Attitude
The first of these strategies, namely sporting a ‘can-do’ attitude, involves an endeavour toward independence insofar as additional tensions are avoided in the relationship. These actions are not directed against parents and other members of the immediate environment:
“My parents must ultimately come to grips with the fact that I’m already an adult, and I don’t need to be spoken to like a child, that they don’t need to stand over me and watch over me every step of the way. After all, I have already given them evidence many times that I can cope and do not need the help of others (…)”.
In other words, such measures are non-confrontational by definition. They are only intended to highlight particular virtues of the person in question, which will allow him or her to achieve a greater degree of autonomy and self-determination in the context of relations with other family members:
“I go out to attend to my affairs. After all, it’s really within my capabilities to go to the store and buy whatever I need. And I don’t need anyone to do it for me. As an adult, I am responsible for myself and can handle my affairs (…)”.
Thus, the measures taken openly in the presence of parents and other members of the immediate environment are aimed at giving credence to the fact that an individual with a disability can act independently. What is at stake is building confidence in the person’s ability to make decisions independently and act autonomously:
“Whenever they (parents - note by the Author) see that I can go to the store myself, do the shopping myself, go to governmental agencies myself, and I know what to do, they (parents - note by the Author) are persuaded that these issues are not a problem for me. I think this is what gives them grounds to have confidence in me (…)”.
Adjusting Others’ Mistaken Ideas
A different strategy is ‘adjusting others’ mistaken ideas.’ This occurs when a person with a disability takes action to prove their merits as a competent and independent individual in all life domains. However, this strategy invites some deliberate attempts on the part of the participants to show through their actions that their parents and those close to them were mistaken in their previous beliefs about the respondent’s inability to cope with certain life situations:
“That’s just how it was. I couldn’t do it for quite some time, just because. That is, I couldn’t because I wasn’t allowed to. That’s why I thought that if I show them (parents - note by the Author), then perhaps they will nevertheless be able to believe that these are not some unimaginably high ‘stairs’ for me to climb and that I can do this on my own (…)”.
This serves as the participants’ response to tokens of incredulity from other family members regarding the participants’ potential to act independently in various circumstances. Thus, the purpose of such a behaviour is to make parents/siblings realize that their loved one exhibits a level of resourcefulness (usually deemed the broadest possible by the participants themselves) in real-life situations despite his or her disability:
“True, I thought for many years that I wasn’t up for it, that I couldn’t do it, and that I would just always have to rely on someone else’s assistance. But I dared to go and get it done, and it gave me such faith that I almost felt as though I had grown wings. And I thought to myself, ‘Oh no, the problem wasn’t with me, but with my parents, who watched over me way too much after all; they were too protective.’ So I had to break through, I had to prove it to them, overcome these barriers of theirs (…), and I succeeded (laughs - note by the Author). Now they know, and you don’t have to worry about it. They’re more trusting of me, and it’s excellent now (…)”.
Upon analyzing the participants’ statements, there is a temptation to depict their pattern of conduct as defensive as it constitutes a reaction to the actions and behaviours of their parents (and other family members). In this sense, the participants felt entitled to embark on a specific type of behaviour. They deemed themselves justified precisely by their disagreement with their parents and their parents’ lack of understanding of the need for independence and autonomous action:
“This couldn’t go on any longer, either. I felt that if I didn’t take action, it wouldn’t change, so I took a chance and succeeded. I don’t know what would have happened if I hadn’t taken the risk. Probably nothing would have changed, and it would have been the same as before. But it just couldn’t go on like this any longer, well I had to do something, well I had to, and I did (…)”.
Acting Out of Spite
The list of the three strategies undertaken by the participants closes off with ‘acting out of spite.’ Unlike the previously discussed categories, this suite of behaviours evinces an offensive pattern as it implies deliberate and premeditated action against parents or caregivers:
“Well, I could never go on a trip with my friends because my parents never let me. This state persisted for years, and I accepted it for a long time. I was a little girl, and I was afraid of them (parents - note by the Author). But they also always said that I might get hurt somehow, that I might not be able to handle something, or that someone could harm me (…) Well, enough is enough. Once I grew up and saw acquaintances go for outings, I really lost it, packed up my things in secret, and off I went (…)”.
Interestingly, participants often offered excuses for this form of behaviour. This is because they understood it could be considered insubordination to their parents. This realization, however, did not erode their conviction that such steps were necessary. Such measures were thought by them to be the only possible resolution in the face of their parents’ disregard for their desire for autonomy:
“I had no choice. They (parents - note by the Author) gave me no chance to deal with it differently. I would prefer if they saw me differently, if it were their initiative, not mine. But since there was no other option, I had to do it on my own without informing them (…)”.
Another participant expressed a similar opinion, pointing to the role of third parties (friends) who helped her decide to defy her parents:
“Indeed, it wasn’t easy. It wasn’t like I just woke up one day and told myself, ‘This is what I’m going to do now; now, I’m going to muster the courage.’ I had been considering it for a long time. I discussed it with my friend many times, and she gradually convinced me that this was the right thing to do after all. It seems that most people proceed this way that in order to stand up to parents in some way, it is necessary to have the support of other people, preferably friends or close acquaintances (…)”.
Both statements confirm that some participants were open to radical solutions, exhibiting a degree of insubordination towards their parents. At the same time, as indicated by the second respondent, other individuals outside the family also played a significant role in such decisions. In the case cited, these were ‘good acquaintances’ who could take the stance of an outside observer, thereby enabling them to assess the situation more effectively. They provided additional support to the person with a disability, otherwise, the person in question would likely not have demonstrated such an assertive attitude.
Discussion
The presented research indicates that participants with intellectual disabilities regarded their family to be of central importance in their lives. It was also shown that persons with disabilities reckon that their parents’ understanding and acceptance of self-determination largely depended on how they evaluated their children’s competence and skills. This finding aligns with the conclusions reached in other studies (cf. Martinez-Tur et al., 2018; Shogren, 2013). Other researchers have noted that the nature and mode of support offered to people with disabilities is mainly influenced by either the attitudes adopted or the values declared by their mothers (Gustavsson & Nyberg, 2015; Pownall et al., 2011). By contrast, fathers support children with intellectual disabilities in both practical and financial terms (Davys et al., 2016). In the current study, children’s self-determination was found to depend on the values and beliefs held by both mothers and fathers.
However, mothers were demonstrated to act as the primary caregivers in the family. Likewise, prior research (Taylor et al., 2019) showed that affirmation by the family is essential for self-determination. However, as the results of this study indicate, family interactions were not free of conflict and associated distress. Nevertheless, almost all participants emphasized the importance of family, even if those relationships proved problematic for various reasons. Several study participants expressed deep frustration with their parents’ attempts to control their lives. These individuals felt that they were being denied the right to take up challenges and assume responsibility for their actions, which, as they insisted, should be allowed even at the expense of making potential mistakes. The results of this and prior studies (cf. Luyckx et al., 2007) demonstrate that a lax commitment profile and poor accountability for one’s actions are primarily related to excessive control or overprotectiveness on the part of parents. A person with overprotective parents lacks an adequate environment to learn self-reliance, is denied the opportunity to build a sense of competence, and consequently, is unable to learn about their strengths and weaknesses. On the other end of the spectrum, people whose parents exercise little to no control and provide virtually no care may feel unworthy of their parents’ attention.
As indicated by this and previous studies, most parents of children with disabilities are overprotective (Sanders, 2006). Faced with overprotective attitudes in the family as well as a lack of appropriate stimulation, people with disabilities may remain withdrawn, apathetic, and inactive (Tonge, 2010). Environmental stress can trigger regressive behaviours and deteriorate their cognitive abilities, in extreme cases resulting in behaviours conventionally seen as bizarre and diagnosed as psychotic-like. This is an example of the effect of stimulation deprivation, lack of activity, and inhibition of natural socialization, all of which act to secondarily exacerbate intellectual disability. The same conclusion is reached by Stavrakaki and Lunsky (2010), who found that people with disabilities are often exposed to environmental stress, and there are many psychological traumas in their lives. Such environmental influences can sometimes be a crucial factor in the development of anxiety or adaptive disorders.
The study participants, as well as those in previous studies, accepted the support of trusted family members in making choices (Curryer et al., 2018). Family relationships, although sometimes involving a degree of conflict, were seen by adult participants with intellectual disabilities as important and reciprocal.
The findings of the current study reveal that persons with intellectual disabilities implement specific behavioural strategies in response to the attitudes and roles of their parents. They assumed one of the following attitudes when negotiating their identity within the family: affirmation, reconciliation, confrontation or rebellion. These attitudes formed a distinctive spectrum, ranging from degrees of acceptance and appreciation to neutrality and reluctance. It should be borne in mind that the attitudes of affirmation and acceptance regarding a particular situation (co-created by parents) applied both to circumstances in which participants with disabilities experienced strong parental control and those in which they encountered greater freedom and autonomy. Persons with disabilities demonstrated acceptance of the situation in both cases, despite the two states of affairs differing. The unifying characteristic was their agreement with the circumstances in question without any claims for change. This approach, in turn, laid the groundwork for emotional and cognitive stability within the participant’s identities.
Conversely, attitudes of confrontation and rebellion were characteristic of people who did not accept the situation and sought to change it. These people took direct measures aimed at deflecting a particular perception of themselves held by their environment. Thereupon, they could also embark on rearranging relationships within the family to achieve greater autonomy and independence. Such an attitude predominantly originated from the participants’ sense of being treated by their parents or significant others unduly and inadequately for their age, gender or level of competence. This was felt within such sensitive issues as emotions and intimate life. The participants also emphasized that they felt anxious about and had difficulty discussing their sexuality (Brkić-Jovanović et al., 2021). Participants frequently made efforts to alter their image in the perceptions of others. These efforts ranged from demonstrations of ‘can-do’ behaviours, ‘adjusting others’ mistaken ideas,’ and ‘acting out of spite.’ The development of the participants’ self-esteem and self-acceptance opened an avenue for negotiations of the participants’ position in the family. This process was shaped by a combination of individual characteristics, such as gender, age, competence (often associated with the level of cognitive development), and social and cultural factors. Although this may be true, for these variables to become a catalyst for change, the right conditions must be in place. This study, in line with the findings of previous studies, corroborates the mutual interdependencies within a family and highlights the importance of healthy family relations in promoting self-determination in family members with intellectual disabilities (Taylor et al., 2019).
The results of this study advance knowledge about the transition into adulthood experienced by young adults with intellectual disabilities amid autonomy negotiations within their families. The research presents the perspectives of young adults themselves. It was found that some young adults with mild intellectual disabilities may share aspirations for adulthood with typically developing adolescents (Furstenberg et al., 2004; Smith et al., 2017). They do so despite the gravity of the challenges and obstacles faced by this population, which differ from the problems encountered by their typically developing peers. Disparate opportunities may affect their attitudes and plans for the future.
The period of transition from childhood to adulthood was, according to the participants, particularly difficult and required them to take exceptional measures, leading them to change both their convictions and, even more so, the attitudes that once fully aligned with their parents’ position. As the participants were eager to emphasize, parents played a vital role in the planning process during this period, sometimes stepping in to take advantage of their power and determine the preferences of their sons or daughters with intellectual disabilities (cf. Pilnick et al., 2011). According to Taylor et al. (2019), favourable conditions for experiencing and exploring the environment, and for making commitments, can help people with intellectual disabilities develop the key competencies and skills necessary to crystallize a stable identity. A stable identity is characterized by a tendency toward a positive attitude toward oneself, a high level of self-control, and a sense of emotional stability.
Conclusions
Coming of age implies shifting involvement in social relationships from the family of origin to intimate relationships and one’s own nuclear family, leaving behind school and embarking on work, progressing from economic dependency to financial independence, and assuming responsibility. Such transitions pose additional problems for young people with intellectual disabilities, who face various limitations, such as social and cultural barriers. That is why it is difficult for them to achieve adult status.
Based on the research presented, individuals with disabilities rely on family for support and comprehensive assistance on their journey towards adulthood. Notwithstanding the significance of family ties, the constraints imposed by the parents can make it difficult for young people with disabilities to follow a path towards adulthood. As Layder (2004) points out, our self-acceptance and confidence are not enough when constructing our identity. We must also feel that others approve of us and believe in us. If a young person is not provided with ample space to develop their self-reliance and independence, they may struggle to ‘come of age’ and develop an adult identity.
Practical Implications and Further Research
The findings can enhance the understanding of the needs of people with disabilities in family settings and provide insight into what kind of support is best suited to young adults with intellectual disabilities during adolescence. This study reveals that young people with intellectual disabilities not only have distinct needs but also hold different views on the relationship with their parents. This study may be of particular importance not only to the parents themselves but also to specific institutions and social welfare services that have been established to assist these individuals and their families (cf. Cavet & Sloper, 2004).
These research findings also prove important for government officials, who can draw on them to design policies that adequately address the needs of people with disabilities and their families. It is necessary to intensify the efforts of authorities at both central and local government levels to deliver personalized and accessible assistance to families caring for persons with disabilities. Systemic changes should be sought to maximize the choice range and inclusion of the families caring for persons with disabilities while prioritizing the autonomy and independence of persons with disabilities.
A broader body of knowledge is required, both to determine what holds particular significance for individuals within this age range and at this point in life, and to facilitate their ability to set and fulfil relevant goals. Affording them such a possibility can maximize their chances of leading happy and fulfilled lives, which, in turn, is likely to have a positive impact on society as a whole.
In conclusion, further research is imperative to aid initiatives in changing the attitudes of the immediate environment of people with intellectual disabilities. Future research should also investigate the role of group identification, social support, and peer support in promoting self-determination among individuals with intellectual disabilities. It would also be beneficial to conduct longitudinal studies to gain a deeper understanding of identity emergence beyond a snapshot at a single time point and to explore the multifaceted factors that contribute to identity formation in individuals with intellectual disabilities.
Strengths and Limitations
A strength of this study is that it addresses the opinions of people with mild intellectual disabilities regarding the conditions of their coming of age. This issue has not been covered extensively so far. Furthermore, the study at hand employs a qualitative approach to analyze the transformative processes of adolescence experienced by individuals with intellectual disabilities. It employs the narrative lens of identity to underscore the significance of everyday interactions and activities. This exploratory approach enables us to make a meaningful contribution to the field of identity research. In addition, this is the only study of its kind to have been conducted in Poland to the researcher’s knowledge.
The applicability of the findings may be limited. Firstly, some caveats arise from the small sample size. A larger sample could have broadened the scope of the findings. Therefore, further exploration of the themes and issues defined in this study is advisable. Secondly, the results of a qualitative study cannot be generalized to the broader population. This study was primarily designed to identify the perceived circumstances of young people with mild intellectual disabilities. For this reason, it may be difficult to extrapolate the findings to broader groups. Thirdly, the study was retrospective, which created a risk of recall bias. Fourth, due to the specific socio-cultural context of Poland, the results may not be relevant for people with disabilities in other countries.
Once these limitations are accounted for, however, the findings may be considered to reveal how coming of age for young people with mild intellectual disabilities can be fraught with various difficulties. The findings may also uncover what role the family can play in this period.
Acknowledgements
The author extends his thanks to all respondents for sharing their personal stories and dr Katarzyna Kobos and Michael Doughty for their invaluable help in the translation and linguistic correction of the text.
Declarations
Ethics Approval
This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by University of Lodz.
Informed Consent
Informed consent was obtained from all individual participants included in the study and participants gave consent regarding publishing quotations from their interviews.
Conflict of Interest
The author declare no competing interests.
Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
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