A Glimpse into the Future: Will Neurotypical Siblings Become Future Caregivers of Their Siblings with ASD?
Brianne K. Redquest (MSc), Department of Kinesiology and Physical Education
Wilfrid Laurier University, Waterloo, Ontario
Dr. Margaret Schneider (PhD), Department of Kinesiology and Physical Education
Wilfrid Laurier University, Waterloo, Ontario
Dr. Paula C. Fletcher (PhD), Department of Kinesiology and Physical Education
Wilfrid Laurier University, Waterloo, Ontario
Correspondence concerning this article should be addressed to Brianne Redquest, Department of Kinesiology and Physical Education, Wilfrid Laurier University, 75 University Avenue West, Waterloo N2L 3C5
Adult siblings of individuals with autism spectrum disorders (ASD) may ultimately become their siblings' primary caregivers when their parents are no longer able to do so. The purpose of this study was to examine the lived experiences of adult siblings of individuals with ASD, specifically examining their thoughts about their siblings’ futures. Nine neurotypical siblings participated in one-on-one, semi-structured interviews. Four major themes emerged from data analysis but only one will be discussed in ‘A Glimpse into the Future,’ allowing for further elucidation and development of this theme. Findings will be useful in informing decision-making around the development of support and resources for siblings currently caring for, or who may be entering a caregiving role, for their siblings with ASD.
Keywords: ASD; siblings; future; concerns; qualitative; caregiving roles
The overall prevalence of autism spectrum disorders (ASD) has increased 120% since 2000, currently affecting 1 in 68 children (Center for Disease Control and Prevention, 2014). Factors likely contributing to this increase are increased awareness and acceptance of ASD, the changing definition and diagnostic criteria of ASD, and inaccurate diagnoses (Matson & Kozlowski, 2011). ASD is a lifelong disorder influencing the lives of family members, especially those in caregiving roles. Due to the personal care and support required, it is likely individuals with ASD will live with and depend on their parents and/or family members for their lifetime. With an aging population and a high prevalence of ASD, questions arise as to who will take care of these individuals when their current caregivers are no longer able to do so?
To remain consistent with current literature, the term caregiving ‘role’ will be used when discussing the future of siblings of individuals with ASD. A caregiving role may consist of financial management, direct care, decision making regarding life events, legal roles, and advocacy (Bigby, 1997). Such tasks coincide with findings and therefore the term ‘role’ is most appropriate.
Previous research exploring the experiences of primary caregivers (primarily mothers) of individuals diagnosed with ASD reported feeling: socially isolated (Fletcher, Markoulakis & Bryden, 2012; Hodgetts, Nicholas & Zwaigenbaum, 2013; Woodgate, Ateah & Secco, 2012), compromised health (Fleishmann, 2005; Fletcher et al., 2012; Hodgetts et al., 2013), and financial strain (Fletcher et al., 2012; Hodgetts et al., 2013). Evidently, taking care of individuals with ASD can be very difficult. It is conceivable aging caregivers may be unable to continue their caregiving demands. Additionally, their inabilities to do so may also stem from the increasing and/or changing needs of their aging children. When this occurs, other family members may have to assume these roles. Consequently, siblings of individuals with ASD may need to assume the challenging roles as primary caregivers.
In studies examining siblings’ experiences, the future has been briefly discussed. In a qualitative study exploring the experiences of siblings living with their brother or sister with ASD, researchers asked participants aged 7 to 20 years, if they had spoken to their parents about future concerns (e.g., caring for their siblings with ASD). Four of 14 participants had spoken about their future concerns with their parents. Five participants reported feeling very concerned about their siblings’ futures, for example; their siblings’ welfare, potential for future employment, and being bullied (Mascha & Boucher, 2006).
Further research has found sibling participants often worried their siblings with ASD would not be able to live “normal” lives in the future (Benderix & Sivberg, 2007; Moyson & Roeyers, 2011; Petalas, Hastings, Nash, Reilly & Dowey, 2012). Additionally, sibling participants worried about their welfare when parents were no longer capable of taking care of their siblings. Some siblings felt they were neither capable nor willing to take on such demanding roles (Benderix & Sivberg, 2007).
Tozer and Atkin (2015) interviewed 21 adult siblings (age 25 to 67 years) of individuals with autism who also had learning disabilities. The study’s purpose was to understand the expectations associated with social care provided by the adult siblings. Findings shed light on the difficulties adult siblings experienced while trying to balance the demands of their own lives (e.g., work, children) and those associated with caring for their siblings with autism. Another difficulty adult siblings conveyed was their frustration that the health care practitioners of their siblings with ASD did not include them in discussions about their siblings. Nor did health care professionals offer any advice pertaining to their situations as siblings or consider the difficulties associated with being siblings to individuals with ASD. Tozer and Atkin (2015) contend practitioners must consider the needs of siblings of individuals with ASD to enhance social care for all parties involved.
It is important to further understand the future concerns of siblings of individuals with ASD. As such, this paper examines the lived experiences of adult neurotypical siblings of individuals with ASD, by specifically examining their future concerns with regards to their siblings’ health, their impending caregiving roles for their siblings with ASD, and factors facilitating less stressful transitions into these roles. The following research question guided this study: What are your thoughts with regards to your sibling’s future?
A qualitative phenomenological research design was deemed the most appropriate approach in our attempt to understand the perceptions, perspectives and understandings of siblings when asked about the future caregiving roles of their siblings with ASD. Phenomenological focus of inquiry entails “carefully and thoroughly capturing and describing how people experience some phenomenon- how they perceive it, describe it, feel about it, judge it, remember it, make sense of it, and talk about it with others” (Patton, 2002, p. 104).
Participant Recruitment and Sample Description
After ethics approval, criterion sampling and snowball sampling ensued (Patton, 2002). Criterion sampling ensured all potential participants fit the stated criteria (i.e., an individual 18 years or older, who was a neurotypical sibling of an individual formally diagnosed with ASD). Neurotypical siblings will be referred to as siblings for the remainder of the paper. Snowball sampling entailed asking key informants (e.g., current participants or individuals who worked at facilities serving individuals with ASD) to assist with recruitment by asking to recommend potential study participants. Participants were further recruited through flyers distributed to facilities serving individuals with ASD and through word of mouth.
Participant recruitment ceased when the research team concluded data saturation had been reached. The researchers felt confident further recruitment would not uncover new information.
The sample consisted of seven females and two males, ages 19 to 28 years. In addition to these nine participants, an additional male participant was included in this study. Upon thorough exploration and analysis, this male was deemed a negative case. According to Schwandt (2007), a negative case is “an instance or case that refutes or challenges a developing hypothesis” (p. 207). His experiences were described in a predominantly negative and hostile manner, and were unlike the experiences of the other nine participants. Morse, Barrett, Mayan, Olson, and Spears (2002) stated that seeking negative cases enhances trustworthiness and ensures validity.
Eight participants had one sibling formally diagnosed with ASD, while the remaining participant had two siblings formally diagnosed with ASD. Nine siblings with ASD were males and ranged from 18 to 33 years (Tables 1 and 2).
After consent was obtained, a background questionnaire was completed. The questionnaire consisted of demographic information, the childhood and current relationship with sibling with ASD, and perceived life areas influenced by having a sibling with ASD. Subsequently, each participant completed a one-on-one, semi-structured interview with the primary researcher. The interviews focused on areas such as their roles and responsibilities associated with their siblings with ASD, and their thoughts of their brother or sisters’ future.
To establish trustworthiness, credibility and transferability were addressed as recommended by Lincoln and Guba (1985).
Data were analyzed through the researchers’ interpretations of the phenomenological steps recommended by Moustakas (1994). Although four main themes emerged only the theme ‘A Glimpse into the Future’ will be discussed. Each of the subthemes is discussed in turn (a) Concerns, concern, concerns!; (b) Will I be a future caregiver? the roles and responsibilities that lie ahead; and (c) In a perfect world.
Interviews ranged from 39 minutes to an hour and 38 minutes, with an average length of an hour and 3 minutes. Interviews were transcribed verbatim and then analyzed by grouping quotes into themes and subthemes. Participant (pseudonyms assigned the researchers) quotes below all pertain to the theme “A Glimpse into the Future”, specifically chosen to encapsulate the essence of the sub-themes in their own words. The subthemes for this theme were: (a) Concerns, concerns, concerns!; (b)Will I be a future caregiver? The roles and responsibilities that lie ahead; and (c) In a perfect world.
Concerns, concerns, concerns!
Participants discussed their concerns about their siblings’ futures, mostly pertaining to their eventual involvement in their siblings’ custodial care, and how much responsibility they wanted to or felt obligated to take on. Other concerns surrounded the physical and mental well-being of their siblings with ASD.
It is particularly hard because there is pressure for the future as well. Like, my mom still works and she probably will for a few more years. But, eventually in 10 or 15 years, they are both going to be nearing 70, and my brother is gonna be like you know, 45 or . And they’re probably not going be able to take care of him that well. Um, so it’s something to kinda think about for me, in terms of how much it is my responsibility to try to help as much as I can. Or, at least find someone that could help him... There is some pressure there, and it is stressful. ~Max
I know I’ll have to look after him when he’s older. That kinda worries me... I don’t know how that’ll play out, maybe a group home. ~Liam
One participant mentioned her concern for her sibling’s well-being in the future.
I’m scared that, because she’s getting older um, her capacity to learn is shortening... It makes things harder on her because she can’t do the things she used to... We’ll tell her to put her coat on... and she just looks at you. We’ll continuously repeat it, and she’ll just look at you. And that gets really frustrating, because she would have known what to do, like, a week before and now it’s like, “Why aren’t you doing it?”~Lilly
Further, Ava mentioned her concerns surrounding the potential pre-mature death of her sibling with ASD, as he does not lead a healthy lifestyle. She was also worried about how her brother would react if she were to pass away before he did. However, her main concern was the death of her parents and the effect their deaths would have upon her brother, and the potential necessity for her to assume the role as his primary caregiver.
He doesn’t lead a very healthy or active lifestyle, because he isn’t that coordinated. So exercise isn’t a big thing for him... he doesn’t watch what he eats... he just does not exercise whatsoever. And it’s something that concerns me, that his heart is gonna give out before mine does... I’m hoping and praying that it doesn’t happen anytime soon. But those are my two main concerns. One is that I end up outliving him and the other thing, well, the other thing is, what if I go before he does? Because I know that will be devastating for him. My main concern is that we both make it to the future and my parents are gone, now what? ~Ava
All participants conveyed their concerns for the future with regards to their siblings with ASD. The concerns participants described invoked a great deal of worry and made them question what the future might hold.
Will I be a future caregiver? The roles and responsibilities that lie ahead
As siblings of individuals with ASD, all participants reported they believed they would have to fulfill a caregiving role when their parents were no longer able to do so. However, the nature of this perceived role differed. For Liz, she stated she would want to maintain the relationship she and her brother currently have.
I mean trying to just maintain what we already have... Say, he was living alone in a house, I would definitely, say I went over twice a week and make him dinner... I would for sure want to be in his life and have some sort of relationship. It is hard to say. But I would definitely want to take on some sort of responsibility, I guess just to make it easier for him and for my parents.
Max reported that he would help his brother, if it did not affect his own life.
Ideally I would, I would do as much as I can to help him and my parents to live comfortably, without that affecting what I wanna do.
In some cases, participants described wanting to assume a full-time caregiving role.
I remember my parents’ idea was that he would have a primary caregiver... that makes me really uncomfortable thinking about something like that. That is the last thing I want. I don’t want Vince to be taken care of by a stranger. I don’t care if they’re trained, I don’t, I don’t like that. Um, because they don’t know Vince…. I remember me and my sister sat down and I was like “Well, I don’t care if he comes and lives with me”… I know where he is gonna be at all times, and I know he’ll be comfortable because he will be with me. And if it means that I have to center all of my relationships around that, whether it be romantic or professional, friendships, whatever then so be it. But at least I know he is safe, and he is somewhere that I can keep my eye on him so nothing bad happens.~Ava
I would prefer that he live with me than with, um, in a group home or institution. Um, I have kind of mentioned that to my parents, their sort of fear is “What if you have a job that makes that difficult? Or what if you have a partner that is not okay with that?” So they have raised concerns, but I think it makes them happy that I want to take an active role. ~ Chloe
All participants spoke about the role they would ideally like to fulfill pertaining to the care of their sibling in the future. It was evident that some participants felt a sense of obligation to assume a more demanding caregiving role, while others stated they wanted to assume a 24/7 caregiving role for their sibling, and did not feel obligated to do so.
In a Perfect World
Several participants conveyed how the “perfect” future situation would unfold for their siblings. In all cases, participants wanted the best for their siblings’ future. For example, several participants hoped their siblings would be independent and self-sufficient.
So I know he is capable of doing things like that [having a job]... It is just gonna be a slow process, and I hope that one day he will be able to be pretty self-sufficient. ~Liz
I just hope that he can get a good job, make money, live on his own, if he chooses to live on his own. ~ Laura
One participant stated she would like to see improvements in her step-brother’s physical and emotional well-being.
I’d like to see his moods more stabilized, I guess... I know it’s hard on himself, even taking so much medication... or having side effects from them. Like, for an example, he has lost so much weight just because of the medications. I know the lithium gives him the shakes. So like, in that sense I would like to see him, like, those things kinda calm down, and get to a really normal, steady state, and improve. ~Mya
Although Chloe’s perfect world consisted of an impractical reality, she wished that her brother was a little younger.
I wish he was five years younger…. Because I feel like there would have been so much more available. ~Chloe
Ava’s parents suggested that her brother live in a group home or with a caregiver in the future, however this was not a suitable arrangement for Ava.
But should we live in the perfect world... I would rather him living with me than anyone else. ~Ava
It was evident participants wanted the best for their siblings’ future. Independence and well-being were significant factors in this issue.
This paper highlights the future concerns of siblings of individuals with ASD. The findings highlight examples whereby participants spoke about the future caregiving roles they may potentially assume to assist their siblings, their concerns with regards to their siblings with ASD (e.g., mental and physical well-being) and finally, their hopes for the future pertaining to themselves and their siblings with ASD.
Although all participants stated they believed they would fulfill some type of a caregiving role for their siblings with ASD when their parents were no longer able to do so, the role they wished to fulfill varied depending on the participant. In a study conducted by Petalas et al. (2012) sibling participants originally planned they would take care of their siblings when their parents were no longer able to do so, but when given the opportunity to reflect on their roles, some felt that a housing complex meant specifically for adults with ASD would be more practical and fair to their siblings. This alternative living situation was only mentioned by one of nine participants in the present study, but it should be noted this alternative living situation was not asked about or probed by the primary researcher.
Regardless of the caregiving role that these participants wanted to assume, all participants had concerns about their siblings’ future. The concerns expressed by our participants were similar those reported from other studies (Benderix & Sivberg, 2007; Mascha & Boucher, 2006; Moyson & Roeyers, 2011; Petalas et al., 2012). For example, research findings described how siblings of individuals with ASD reported concerns about their siblings’ well-being and the degree of independence their siblings would possess in the future. Moyson and Roeyers (2011) stated that their participants questioned whether it would be possible for their siblings with ASD to work or live alone. Similarly, Benderix and Siverberg (2007) found sibling participants felt sorry that their brothers or sisters with ASD would not be able to grow up as “normal” or independent people. This is mirrored in the current study; for example, one participant was concerned about her brother’s health and worried he may die prematurely, due to his unhealthy lifestyle.
Above all, the findings revealed that participants conveyed the hopes they had for their siblings in the future. For example, participants wanted their siblings to live an independent life by having jobs and owning homes. Other participants wanted to see their siblings’ well-being improve.
Although the future for participants was described with uncertainty, there were a few things participants were certain about. It was clear all participants were sure they would assume some sort of caregiving role for their siblings with ASD in the future. This presented the participants with some degree of concern and confusion as to what type of role they may assume. This insight highlights the need for further research with regards to the future of siblings of individuals with ASD. Specifically, if we can understand the concerns and hopes that pertain to their siblings’ future, this has the potential to lead to the development of strategies that can reduce their concerns and enhance the likelihood of achieving this “ideal world.” Such research needs to gain in-depth insights with respect to how siblings would like to see the future unravel for their sibling with ASD, particularly by posing the following questions: what is the ideal role you would like to assume with regards to caring for you sibling with ASD?; what are your particular concerns with regards to the future and having a sibling with ASD?; and, how might these concerns be mitigated to ease the burden this caregiving role may have over time? Such research might facilitate a smoother transition towards caring for their siblings with ASD into the future.
Limitations in our research are evident. The sample lacked gender diversity, as the majority of participants (n=7) were females. This could have affected the findings of the reported caregiving role these participants wanted to assume. According to Greenberg et al. (1999), females are more likely to assume a future caregiving role than males, which may explain why most participants wanted to assume an active caregiving role. We also recognize that our sample reflected the experiences of mostly Caucasian individuals, and therefore had limited cultural diversity. Finally, all participants in this study volunteered to participate and as a result they may be more involved and committed to their sibling with ASD. Consequentially, their experiences may be different than individuals who did not volunteer.
The stress and concerns of adults assuming a caregiving role with regards to their siblings with ASD needs to be further investigated. In doing so, examining the experiences of adult siblings that have already assumed a caregiving role for their siblings with ASD or to track individuals longitudinally throughout their caregiving journeys would be beneficial. If the struggles these individuals currently experience or experienced while transitioning into these roles are understood, the challenges can potentially be mitigated for those individuals fulfilling this role in the future. Further, the positive experiences of individuals already assuming a caregiving role for their siblings with ASD could act as a means of support and comfort for individuals that are likely to become their siblings' caregivers in the future. Finally, exploring factors (e.g., cultural diversity, the severity of their sibling’s ASD, the gender of both siblings, the closeness of the relationship between the siblings) that could possibly influence whether siblings would want to assume caregiving roles for their siblings with ASD would also assist in understanding this area of study.
Conclusions and Implications
It was evident their siblings’ futures and their future role providing care to their siblings with ASD was important to them, but was also concerning to them. To ease this transition of becoming caregivers for their siblings, it is important that siblings of individuals with ASD have resources and support systems upon which they can rely. Examples of such support could include support groups where adult siblings of individuals with ASD could share their thoughts with one another about their future roles for their siblings. Also, health professionals need to advocate for an open line of communication about future caregiving expectations between parents and their children. Additionally, thoughtful and responsive suggestions and recommendations initiated by a practitioner could assist in easing the transition of siblings becoming caregivers. For instance, prior to when an individual with ASD turns 18 years of age; practitioners can meet with family members to discuss options for the future. This allows siblings to explore and learn about potential options for when their parents are unable to care for their brother or sister with ASD. If the sibling chooses to assume the role of a caregiver to their sibling with ASD, advice and guidance as to how to transition into this role should be provided by the practitioner. Not only can practitioners be involved prior to and at the beginning of a sibling assuming this role, but also throughout their entire experience. Practitioners should offer continuous support, assistance, and guidance throughout the individual’s caregiving experience to their brother or sister with ASD. Finally, it is anticipated this research will be the beginning of more research pertaining to the future roles that siblings of individuals with ASD will likely fulfill.
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Background information on siblings with ASD
*please note that one participant had two siblings with ASD. Thus, there are nine participants but ten siblings with ASD.
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