Journal of Autism and Developmental Disorders

https://doi.org/10.1007/s10803-018-3464-6

S.I. : PARENTING CHILDREN WITH ASD

Childhood Caregiving Roles, Perceptions of Benefits, and Future

Caregiving Intentions Among Typically Developing Adult Siblings
of Individuals with Autism Spectrum Disorder
Amy K. Nuttall1 · Ben Coberly1 · Sara J. Diesel1

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Abstract
Typically developing siblings (TDS) of individuals with Autism Spectrum Disorder (ASD) frequently serve as caregivers
during childhood, known as parentification, and primary caregivers for siblings in adulthood. In order to evaluate mechanisms
linking these roles, we surveyed emerging-adult TDS (N = 108) about childhood parentification roles caring for parents and
siblings, current perceptions of benefits associated with ASD and with engaging in parentification, and intention to provide
future caregiving. We hypothesized that parent-focused parentification would negatively impact caregiving intention via
perception of decreased benefits whereas sibling-focused parentification would positively impact intention via perception
of increased benefits. Results indicate that parent-focused parentification is common and associated with fewer perceived
benefits of caregiving and less intention to provide future caregiving. Prevention implications are discussed.

Keywords Sibling relationships · Parent–child relationships · Parentification · Caregiving · Family obligation · Benefit-
finding

Introduction siblings with disabilities (Heller and Arnold 2010). Moreo-

ver, understanding the role of TDS in caring for individuals
Typically developing siblings (TDS) of individuals with with ASD is particularly important because adult TDS main-
Autism Spectrum Disorder (ASD) serve as important car- tain less contact with their siblings with ASD and report
egivers for their siblings across the lifespan. In childhood, more pessimism about their siblings’ future than TDS of
TDS of children with disabilities frequently engage in high individuals with other neurodevelopmental disabilities, such
levels of caregiving behaviors (Lamorey 1999; Nixon and as Down syndrome (Hodapp and Urbano 2007; Orsmond
Cummings 1999), which is referred to as parentification and Seltzer 2007). Given the relational risk faced by TDS
(Jurkovic 1997). The majority of TDS report an awareness of and their siblings with ASD in adulthood in comparison
the long-term caregiving needs of siblings with a disability to other disability contexts, it is particularly important to
and of their future role in providing care for their siblings. understand the mechanisms through which the childhood
For example, one study found that, in childhood, 80% of caregiving experiences of TDS of individuals with ASD are
TDS report that they will be the person most responsible associated with intention to provide caregiving in adulthood
for taking care of their sibling with a disability in the future because identification of mechanisms is critical for inform-
(Eisenberg et al. 1998). Accordingly, the care provided by ing intervention (Cicchetti and Toth 2006). Therefore, the
TDS becomes increasingly important as parents age and present study examined young adult TDS’ retrospective
TDS transition to a primary caregiving role for their adult reports of childhood parentification experiences and cur-
rent perceptions of benefits associated both with having a
sibling with ASD and with caregiving roles as predictors of
* Amy K. Nuttall TDS’ intention to provide care for their sibling in the future.
[email protected]
1
Department of Human Development and Family
Studies, Michigan State University, 552 W. Circle Drive,
East Lansing, MI 48824, USA

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 Journal of Autism and Developmental Disorders

Caregiving Responsibilities in Childhood without engaging in caregiving for parents (Scorgie and
Sobsey 2000). Furthermore, a study comparing sibling
In childhood, caregiving by TDS may be directed towards dyads in which one sibling had a disability with sibling
caring for parents or towards caring for siblings (Tozer et al. dyads in which neither sibling had a disability found that
2013), referred to respectively as parent-focused parentifi- TDS engage in caregiving for siblings with disabilities at
cation and sibling-focused parentification in the broader increased levels (Hannah and Midlarsky 2005). Moreover,
parentification literature (Hooper et al. 2011). TDS of chil- older siblings are more likely to provide sibling-focused
dren with disabilities frequently engage in parentification in parentification among typically-developing sibling dyads,
their families in response to sibling and familial needs for whereas in the context of disability TDS may engage in
increased caregiving and in order to maintain harmony by sibling-focused parentification regardless of birth order
relieving parental stress (Tozer et al. 2013). For example, (Hannah and Midlarsky 2005). Given that the child dis-
one study found that families of children with disabilities ability literature suggests that sibling-focused parenti-
experience high levels of parental conflict and TDS are more fication may be particularly common among TDS, it is
likely to mediate parental conflicts, and to do so at lower important to empirically examine whether TDS of children
levels, than families that do not have a child with a disability with ASD engage in higher levels of sibling-focused par-
(Nixon and Cummings 1999). Beyond the disability context, entification than parent-focused parentification.
such engagement in parentification is discussed as provid- TDS’ involvement with siblings with ASD in adulthood is
ing children with a mechanism to support their family in a likely predicted by their relationships earlier in development
way that may foster harmony in the family system (Cum- (Bigby 1998). Indeed, in the broader parentification litera-
mings and Davies 2010). However, this literature also cau- ture retrospective reports of childhood parentification are
tions that when parents are the source of familial stress and highly correlated with current engagement in parentification
children respond by providing care to parents, parents may during young adulthood (Jurkovic et al. 2001), suggesting
be unable to provide the scaffolding necessary to support that childhood caregiving roles impact caregiving responsi-
children in coping with caregiving roles (e.g., Davies et al. bilities in adulthood among families in which there is not an
2008). As such, parent-focused parentification is expected to individual with a disability. Moreover, TDS’ experiences of
be characterized by a lack of reciprocation of caregiving as sibling-focused parentification in childhood have been asso-
parental needs are prioritized over children’s needs (Shaffer ciated with positive relationships with siblings with ASD in
and Sroufe 2005). Such caregiving roles are expected to be adulthood (Tomeny et al. 2017) and positive sibling rela-
burdensome for children and interfere with their develop- tionships in adulthood have been associated with increased
ment (Jurkovic 1997). In contrast, when children support caregiving roles of TDS (Bigby 1998). However, if TDS’
their families by providing care for siblings, parents may experiences of parent-focused parentification are associated
become more available to reciprocate care, resulting in with burden and risk as the broader parentification literature
positive developmental outcomes for children (Walker and suggests, childhood engagement in parent-focused paren-
Lee 1998). Therefore, parent-focused parentification and tification may be associated with less intention to provide
sibling-focused parentification are likely distinguishable by caregiving for siblings with ASD in adulthood.
their differential influence on the child, with parent-focused Moreover, drawing from the literature on the develop-
parentification resulting in negative effects for TDS and ment of prosocial, or helping, behaviors provides support for
sibling-focused parentification resulting in positive effects the potentially negative influence of parent-focused paren-
for TDS. For example, in the ASD literature, a recent exami- tification on TDS’ intentions to provide caregiving to their
nation of retrospective reports of parentification from adult sibling with ASD. Young adults who report parent–child
TDS of individuals with ASD (Tomeny et al. 2017), parent- relationships in which they have good autonomy support
focused parentification experiences significantly predicted and emotional support (e.g., the expected reverse dynamic
anxiety and stress among adult TDS whereas sibling-focused of parent-focused parentification) display increases in proso-
parentification was not associated with adjustment risk. In cial behavior during emerging adulthood and express values
addition, reports of sibling-focused parentification predicted related to civic engagement, such as volunteering (Luengo
positive sibling relationships whereas parent-focused paren- Kanacri et al. 2014). Given the specific relational challenges
tification did not. Such research demonstrates the differential faced by TDS and siblings with ASD in adulthood over TDS
impacts of parent-focused versus sibling-focused parentifica- of individuals with other disabilities (Hodapp and Urbano
tion experiences among TDS. 2007; Orsmond and Seltzer 2007) and the need for TDS to
Sibling-focused parentification is likely a particularly serve as caregivers to siblings with ASD in adulthood (Hel-
salient experience for TDS. One study found that TDS ler and Arnold 2010), it is particularly important to under-
may engage in caregiving for siblings with disabilities stand the potentially differential influences of parent-focused
and sibling-focused parentification on caregiving intention

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Journal of Autism and Developmental Disorders

in adulthood and the mechanisms through which these pro- associated with fewer perceived benefits, childhood engage-
cesses unfold. ment in parent-focused parentification may be associated
with lesser intentions to provide caregiving for siblings with
Perceptions of Benefits ASD in adulthood whereas sibling-focused parentification
may be associated with perceptions of increased benefits
Benefit finding refers to an ability to identify positive con- and, in turn, greater intention to provide caregiving.
tributions to self-development resulting from challenging
or stressful life experiences (Helgeson et al. 2006). A sur- The Present Study
vey of more than 1000 adult TDS found that the majority
of TDS report that growing up with their sibling’s disabil- First, we sought to descriptively understand childhood expe-
ity provided opportunities to learn and to understand fam- riences of parentification and future caregiving intentions
ily dynamics and to develop empathy, compassion, and to of emerging adult TDS of individuals with ASD. Second,
become more responsible (Hodapp et al. 2010). In addition we sought to understand the processes through which TDS’
to experiencing personal benefits, TDS may also perceive childhood experiences of parentification impact future
benefits related specifically to parentification roles. Role intentions to provide caregiving for siblings with ASD in
benefits include enjoyment of the parentification role, feeling adulthood. Specifically, we examined the indirect effects of
appreciated in the role, and feeling part of a team within the childhood experiences of parent-focused parentification and
family system (Hooper et al. 2011). For example, mothers sibling-focused parentification on intention to provide car-
of children with ASD have reported that ASD made their egiving in the future through current perceptions of benefits
family closer and more united as a team capable of working of ASD and benefits of parentification roles.
together to support the child with ASD (Bayat 2007).
Sibling-focused parentification may foster the develop- Hypotheses
ment of benefit finding whereas parent-focused parentifi-
cation may lead to fewer perceived benefits. For example, 1) We hypothesized that TDS would report less intention
qualitative interviews with parents of children with disabili- to provide future caregiving to their siblings with ASD
ties indicate that TDS’ experiences of advocating for their than previously published in the literature on TDS of
siblings resulted in a development of an acceptance of all individuals with Down syndrome.
people (Scorgie and Sobsey 2000). In the broader parenti- 2) We hypothesized that TDS of individuals with ASD
fication literature, sibling-focused parentification has been would report engaging in greater levels of sibling-
reported to be positively associated with individuals’ percep- focused parentification in childhood than parent-focused
tions of role benefits (Hooper and Doehler 2012) whereas parentification.
parent-focused parentification has been reported to be nega- 3) We hypothesized that parent-focused parentification
tively associated with individuals’ perceptions of role ben- would have a negative indirect effect on future car-
efits (Hooper et al. 2011). egiving intentionality given that we expected that par-
When an individual perceives benefits associated with ent-focused parentification would be associated with
having a sibling with ASD or with providing caregiving, perceptions of fewer benefits related to ASD and to
they may be more likely to be willing to engage in caregiv- parentification roles. In contrast, we hypothesized that
ing for their sibling with ASD in the future. Benefit finding sibling-focused parentification would be associated with
appears to lead to the development of prosocial behaviors perceptions of increased benefits related to roles and to
and positive familial relationships, suggesting that benefit ASD and, thus, would have a positive indirect effect on
finding may foster intention to provide future caregiving future caregiving intentionality.
among TDS. For example, in the disability literature, parents
who report that TDS benefit from having a sibling with a dis-
ability have been found to also report that TDS experience Methods
increases in compassion, tolerance, and sense of responsibil-
ity for their sibling (Taunt and Hastings 2002). Specific to Participants and Procedure
the context of ASD, Tomeny et al. (2017) found that parenti-
fication role benefits were associated with adult TDS’ reports Study participants were college students age 18–25 who
of positive sibling relationships. In contrast, parentification self-identified as TDS of individuals diagnosed with
theory posits that individuals who feel burdened by parentifi- ASD. ASD was defined as “Autism Spectrum Disorder,”
cation roles during childhood may abandon their connection “Autism,” “Asperger’s,” and “Pervasive Developmental
with their family in adulthood (Byng-Hall 2008). Therefore, Disability.” Data were collected online using web-based
if TDS’ experiences of parent-focused parentification are survey software Qualtrics. Participants were recruited

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through advertisements emailed to the undergraduate Table 1  Sample characteristics (N = 108)

student body at a large Midwestern public university. %
Potential participants who replied to the advertisement
were then sent a personalized, single-use link to the sur- TDS is older sibling 63.00
vey. Informed consent was obtained from all participants Gender
included in the study. After consenting to participate, par- Male TDS 30.56
ticipants completed eligibility questions to confirm: (1) Male sibling with ASD 78.70
Participants had a sibling diagnosed with ASD (as defined Same gender sibling dyad 28.70
above); (2) Participants had not received an ASD diag- Additional siblings in the family 60.19
nosis, i.e. were indeed typically developing siblings; (3) TDS grade in college
Participants were age 18–25. Eligible participants were Freshmen 34.26
paid $25 for completing the approximately one-hour long Sophomore 22.22
survey. One hundred and seventeen students participated. Junior 9.26
In order to ensure the quality of data collected, validity Senior 34.26
items instructing participants to provide a specific answer TDS currently lives at home 18.52
were embedded throughout the survey measures. Nine TDS employment status
participants were dropped from the sample due to valid- Currently employed 62.04
ity concerns associated with the triggering of this scale. TDS race
Therefore, the final sample size was 108. The mean age White/Caucasian 73.15
of TDS participants was 20.37 years (SD = 1.55) and the Black or African American 11.11
mean age of their siblings with ASD was 18.14 years Biracial/multiracial 10.19
(SD = 5.49). The difference in age between the sibling Asian or pacific islander 3.70
dyads had a mean of 4.79 years (SD = 3.43). See Table 1 Hispanic or latino 1.85
for additional sample characteristics. Parents are married 70.38
Family income
Under $25,000/year 12.03
Measures $25,000–$39,999/year 2.78
$40,000–$54,999/year 9.26
Parentification Inventory (PI; Hooper et al. 2011) $55,000–$69,999/year 4.63
$70,000–$84,999/year 9.26
The 22-item PI was administered to assess retrospec- $85,000–$99,999/year 9.26
tive reports of parentification. The PI has three scales: Over $100,000/year 40.74
Parent-Focused Parentification, Sibling-Focused Paren- Don’t know family income 12.04
tification, and Perceived Benefits of Parentification. The TDS typically developing sibling, ASD autism spectrum disorder
Parent-Focused Parentification scale assesses adult-like
caregiving roles and responsibilities directed towards
one’s parents in childhood and consists of 12 items, such Autism Benefit Finding Scale (Carver and Antoni 2004; Ekas
as, “I often helped solved problems between my parents.” et al. 2015)
The Sibling-Focused Parentification Scale assesses adult-
like caregiving roles and responsibilities directed towards The Benefit Finding Scale assesses the extent to which an
one’s sibling in childhood and consists of 7 items, such individual perceives a medical diagnosis as making a posi-
as, “I was expected to comfort my sibling when they were tive contribution on their life. The measure was originally
sad or having emotional difficulties.” The Perceived Ben- developed by Carver and Antoni (2004) for a breast cancer
efits of Parentification scale assesses positive thoughts population but was modified to the context of ASD by Ekas
and feelings related to childhood experiences of carrying et al. (2015) for administration to parents of children with
out adult-like caregiving roles and responsibilities. This ASD. Because benefit finding has not yet been assessed
scale consists of three items, “I really enjoyed my role in among TDS, the present study modified the instructions
my family;” “I felt appreciated by my family;” and “I felt and question stems for administration to siblings rather than
like our family was a team and worked well together.” All parents by asking TDS to reflect on the positive contribu-
items are rated on a Likert scale ranging from 1 (never tion of a sibling’s ASD diagnosis, rather than a child’s ASD
true) to 5 (always true). Internal consistencies for the three diagnosis, on their lives. The 17 items are rated on a 1 (not
scales were 0.83, 0.79, and 0.88, respectively. at all) to 5 (extremely) Likert scale and includes items such

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Journal of Autism and Developmental Disorders

as, “Having a sibling with ASD has shown me that all people was conducted in Mplus version 8 (Muthén and Muthén
need to be loved.” The internal consistency for this scale 1998–2017) using full information maximum likelihood
was 0.93. estimation to account for missing data.

Intention for Caregiving Involvement in the Future (Skotko

et al. 2011) Results

Emerging adult TDS’ future intention for caregiving involve- Preliminary Analyses
ment with their sibling with ASD was assessed using the
item, “I plan to be involved with my brother or sister with We first evaluated the potential impact of family constella-
ASD when we are adults.” This item was modified to refer to tion variables on our variables of interest (parent-focused
ASD for the present study as the item was originally devel- and sibling-focused parentification, ASD benefits, paren-
oped by Skotko et al. (2011) for a Down syndrome sample tification benefits, intention to provide future caregiving)
to assess the impact of Down syndrome on TDS. Consistent because our sample over-represented female TDS, sibling
with Skotko et al. (2011), TDS rated their agreement with dyads differing in gender pairing, TDS older than sibling
this statement on a 1 (strongly disagree) to 7 (strongly agree) with ASD, and TDS who had additional TDS in their fam-
Likert scale. ily. We found no significant differences in mean levels of
our variables of interest on any of these family constellation
Analytic Strategy variables. See Table 2 for results.
Means, standard deviations, and correlations of all rel-
As indicated in Table 1, our sample over-represented female evant variables are presented in Table 3.
TDS, sibling dyads differing in gender pairing, TDS older
than sibling with ASD, and TDS who have additional TDS Future Caregiving Intentions
in their family. These family constellation variables may
influence sibling relationship quality (e.g., Van Volkom Emerging adult TDS reported a mean level of intention for
et al. 2011); therefore, before testing our hypotheses we first caregiving involvement of 5.98 (SD = 1.33). This observed
examined the potential impact of these family constellations mean was significantly lower than the mean level of inten-
variables on our variables of interest (parent-focused and tion for caregiving involvement previously reported on this
sibling-focused parentification, ASD benefits, parentification item by TDS of individuals with Down syndrome (M = 6.50,
benefits, intention to provide future caregiving). SD = 1.0, N = 570) in the original study by Skotko et al.
Our first two hypotheses were tested with t-tests. First, we (2011), indicating that TDS of individuals with ASD report
tested whether TDS would report less intention to provide lesser intention for caregiving involvement in the future than
future caregiving to their siblings with ASD than previously TDS of individuals with Down syndrome (t(676) = 4.68,
published in the literature on TDS of individuals with Down p < .001).
syndrome using an independent samples t-test. Second, we
tested whether TDS of individuals with ASD would report Occurrence of Parent‑Focused and Sibling‑Focused
engaging in greater levels of sibling-focused parentification Parentification
in childhood than parent-focused parentification; because
parent-focused parentification and sibling-focused parenti- We tested whether TDS of individuals with ASD reported
fication were assessed using scales that differ in numbers of engaging in more sibling-focused parentification than par-
items, the total scores on these scales were divided by the ent-focused parentification. TDS endorsed greater mean lev-
number of scale items prior to conducting a paired t-test. els of parent-focused parentification (M = 2.42, SD = 0.63)
We tested our hypotheses regarding indirect effects of than sibling-focused parentification (M = 1.85, SD = 0.65;
parent-focused parentification and sibling-focused paren- t(107) = 11.42, p < .001).
tification on future caregiving intention via ASD benefits
and role benefits in a single, saturated path analysis model. Examination of Indirect Effects
Given the ordinal nature of our outcome variable of future
caregiving intention, indirect effects were tested using the Parent-focused parentification was significantly negatively
maximum likelihood-based probit model with bootstrapped associated with perception of role benefits (b = − 0.13,
confidence intervals recommended by Muthén et al. (2016). s.e. = 0.05, p < .01) but was not significantly associated with
We used 5000 Monte Carlo integrations and 1000 resamples perception of ASD benefits (b = 0.23, s.e. = 0.24, p = .33)
to construct bootstrap 95% confidence intervals around the or intention for caregiving involvement in the future (b =
product coefficient for inferring indirect effects. Modeling − 0.01, s.e. = 0.02, p = .82). Sibling focused parentification

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Table 2  Results of t-tests and descriptive statistics by family constellation variables

TDS gender M SD n t df p value

Parent-focused parentification Male 27.76 7.02 33 − 1.12 106 .26

Female 29.52 7.72 75
Sibling-focused parentification Male 13.21 4.65 33 0.35 106 .73
Female 12.88 4.50 75
Role benefits Male 11.00 2.35 33 0.77 106 .45
Female 10.53 3.13 75
ASD benefits Male 55.30 15.09 33 − 1.25 102 .21
Female 59.15 14.37 71
Intentions Male 5.94 1.25 33 − 0.22 106 .83
Female 6.00 1.37 75
Same gender dyad M SD n t df p value

Parent-focused parentification No 29.21 7.76 77 0.49 106 .63

Yes 28.42 6.99 31
Sibling-focused parentification No 13.90 4.50 77 − 0.31 106 .76
Yes 13.19 4.66 31
Role benefits No 10.71 2.98 77 0.22 106 .83
Yes 10.58 2.78 31
ASD benefits No 58.75 14.90 77 0.88 102 .38
Yes 56.00 14.05 31
Intentions No 6.06 1.30 77 1.03 106 .31
Yes 5.77 1.38 31
Older TDS M SD n t df p value

Parent-focused parentification No 28.36 5.96 33 − 0.82 99 .42

Yes 29.65 7.98 68
Sibling-focused parentification No 12.12 4.05 33 − 1.25 99 .21
Yes 13.34 4.82 68
Role benefits No 10.64 2.91 33 − 0.32 99 .75
Yes 10.84 3.01 68
ASD benefits No 58.81 15.73 31 0.28 95 .78
Yes 57.91 14.32 66
Intentions No 5.76 1.50 33 − 1.28 99 .21
Yes 6.12 1.24 68
Additional TDS M SD n t df p value

Parent-focused parentification No 28.93 7.40 46 − 0.06 106 .96

Yes 29.02 7.67 62
Sibling-focused parentification No 13.37 5.18 46 0.77 106 .45
Yes 12.69 3.99 62
Role benefits No 11.04 2.56 46 1.13 106 .26
Yes 10.40 3.13 62
ASD benefits No 58.70 14.22 44 0.46 102 .65
Yes 57.37 15.04 60
Intentions No 6.11 1.29 46 0.86 106 .39
Yes 5.89 1.36 62

TDS typically developing sibling, ASD autism spectrum disorder

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Journal of Autism and Developmental Disorders

Table 3  Descriptive statistics and correlations among study variables The indirect effect of sibling-focused parentification
1. 2. 3. 4. 5.
on future intentions via ASD benefits was estimated to lie
between − 0.01 and 0.05, which does not suggest an indirect
1. Parent-focused parentifica- – effect significantly different from zero at the .05 level. Simi-
tion
larly, the indirect effect of sibling-focused parentification
2. Sibling-focused parentifi- .68** –
on future intentions via role benefits was estimated to lie
cation
between − 0.05 and 0.01 with 95% confidence, which does
3. Perceived role benefits − .41** − 0.34** –
not suggest an indirect effect significantly different from zero
4. Perceptions of autism .25* .27** .18 –
benefits at the .05 level. The direct effect of sibling-focused parentifi-
5. Future involvement .04 .12 .31** .39** – cation on future intentions, with the inclusion of the media-
­intentionsa tors, was estimated between − 0.01 and 0.16 with 95% con-
Mean 28.98 12.98 10.68 57.93 5.98 fidence, which does not suggest a direct effect significantly
SD 7.52 4.53 2.91 14.64 1.33 different from zero at the .05 level. Therefore, neither role
Minimum 14 7 3 24 1 benefits nor ASD benefits mediated the relationship between
Maximum 51 25 15 85 7 sibling-focused parentification and future caregiving inten-
*
tions, nor did sibling-focused parentification directly predict
p < .05, **p < .01,
a
future intention to provide caregiving.
Spearman correlations are reported given the ordinal nature of this
variable, all other correlations reported are Pearson correlations

Discussion
was not significantly associated with perception of role
benefits (b = − 0.07, s.e. = 0.08, p = .40) or perception of The present study sought to examine TDS’ intentions to pro-
ASD benefits (b = 0.61, s.e. = 0.38, p = .11) or intention for vide caregiving for their sibling with ASD in the future. The
caregiving involvement in the future (b = 0.07, s.e. = 0.04, extant literature on sibling disability suggests that adult TDS
p = .10). Perception of role benefits was significantly posi- report more negative relationships with siblings with ASD
tively associated with intention for caregiving involvement than siblings with Down syndrome (Hodapp and Urbano
in the future (b = 0.14, s.e. = 0.06, p < .05) and perception 2007; Orsmond and Seltzer 2007). Our results extend this
of ASD benefits was significantly positively associated with literature by noting that emerging adult TDS of individuals
intention for caregiving involvement in the future (b = 0.03, with ASD report less intention to provide caregiving for their
s.e. = 0.01, p < .05). Parent-focused parentification signifi- siblings in the future than TDS of individuals with Down
cantly positively covaried with sibling focused parentifica- syndrome. Although this finding demonstrates increased
tion (b = 22.94, s.e. = 3.13, p < .001). Perceptions of role risk to sibling relationships in the context of ASD over the
benefits and ASD benefits significantly positively covaried context of Down syndrome, the mean intention to provide
(b = 12.51, s.e. = 3.96, p < .01). caregiving in the present sample was 5.98 (SD = 1.33) on a
The indirect effect of parent-focused parentification on 1–7 Likert scale, which suggests that most TDS of individu-
future intentions via ASD benefits was estimated to lie als with ASD indicate an intention to provide caregiving to
between − 0.01 and 0.02 with 95% confidence, which does siblings with ASD in the future, adding further support to a
not suggest an indirect effect significantly different from literature identifying TDS as key caregivers for individuals
zero at the .05 level. The indirect effect of parent-focused with ASD during adulthood.
parentification on future intentions via role benefits was Given the need for adult TDS to serve as caregivers for
estimated to lie between − 0.05 and − 0.01with 95% con- individuals with disabilities, we sought to examine processes
fidence, suggesting an indirect effect significantly different through which adult TDS’ experiences of providing care in
from zero at the .05 level. The direct effect of parent-focused childhood are associated with current intentions to provide
parentification on future intentions, with the inclusion of the caregiving in the future. We differentiated between TDS’
mediators, was estimated between − 0.05 and 0.04 with 95% childhood experiences of providing care to parents and pro-
confidence, which was not significantly different from zero viding care to siblings (parent-focused and sibling-focused
at the .05 level. Therefore, role benefits mediated the rela- parentification, respectively) as it was expected that TDS
tionship between parent-focused parentification and future would engage in both caregiving roles and that these roles
caregiving intentions, such that emerging adult TDS who would lead to differential perceptions of benefits in emerging
experienced higher levels of parent-focused parentification adulthood and caregiving intentions for the future. Contrary
perceived fewer benefits in their role in their family and, in to our second hypothesis, TDS engaged in higher levels of
turn, expressed less intention to provide caregiving involve- parent-focused parentification than sibling-focused parenti-
ment for their sibling with ASD in the future. fication during childhood. This unexpected finding identifies

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TDS as an important source of support for parents coping study by examining how emerging adult TDS’ intentions to
with the stressors associated with having a child with ASD. provide caregiving translate into actual caregiving roles with
Such a finding contributes critical information about the sali- their siblings with ASD later in development. In doing so, it
ence of parent-focused parentification to a literature on TDS’ will also be important to assess not only caregiving involve-
caregiving roles that has only recently begun to examine ment but also caregiving quality. The quality of caregiving
both parent-focused and sibling-focused parentification (e.g., TDS provide to their sibling with ASD is particularly criti-
Tomeny et al. 2016, 2017). cal given that adult TDS are often primary care providers
Moreover, results further identified parent-focused paren- for their siblings (Heller and Arnold 2010) and because
tification as associated with less TDS intention to provide childhood parentification experiences have been linked to
caregiving to siblings in the future as an indirect effect via poor caregiving quality in the context of other relationships.
perception of fewer benefits with engaging in caregiving Childhood parentification experiences have been linked with
roles. Although this was a small effect, this finding suggests compulsive caretaking, which is characterized by expressing
a potential mechanism of caregiving burden from childhood the belief that one knows what’s best for others along with
to adulthood, with TDS appearing to distance themselves a tendency to be overly quick to control interactions rather
from caregiving responsibilities in their families following than relying on social cues (Valleau et al. 1995; West and
childhood engagement in parent-focused parentification Keller 1991). Compulsive caregiving appears to be perva-
(e.g., Byng-Hall 2008). Thus, although engagement of TDS sive in social interactions of individuals with a parentifica-
in parent-directed caregiving during childhood may benefit tion history, occurring in interactions with those who do
parents in the short term, it appears maladaptive for TDS and not need or want to be cared for (Byng-Hall 2002) as well
maladaptive for parents and siblings with ASD in the long as in the context of caregiving relationships, i.e., parenting
term given the caregiving burden faced by parents of adults (Nuttall et al. 2012, 2015). The link between parentifica-
with ASD (Marsack and Samuel 2017) and the need for tion experiences and compulsive caregiving has not yet been
adult TDS to provide caregiving for their adult siblings (Hel- studied among TDS of individuals with ASD. Examination
ler and Arnold 2010). However, given the small observed of compulsive caregiving may be particularly relevant in
effect, future work should seek to explain additional variance TDS’ relationships with siblings with ASD given that social
in TDS caregiving intention. communication difficulties among individuals with ASD
In contrast to parent-focused parentification, sibling- may increase the likelihood that TDS abandon reliance on
focused parentification was not directly associated with social cues and perform compulsive caregiving.
greater intention to provide caregiving to siblings in the Finally, results of the present study may have been influ-
future or increased ASD benefits or role benefits. These enced by the uniqueness of the developmental period of
results are unexpected: we hypothesized positive relation- emerging adulthood. We specifically sampled TDS during
ships between these variables and a meditational pathway emerging adulthood, a distinct developmental period span-
between sibling-focused parentification and caregiving ning from age 18 to age 25 (Arnett 2000). Emerging adult-
intention via perceptions of benefits. These null findings hood is characterized by increased autonomy as individu-
are surprising in the context of the broader literature on als define their own values separate from their families and
parentification experiences among TDS of individuals transition out of their parents’ home (Arnett 2000). During
with ASD. For example, Tomeny et al. (2017) found that this developmental period, sibling relationships among typi-
sibling-focused parentification predicted positive sibling cally developing individuals are characterized by decreased
relationships in adulthood as reported by TDS of individu- contact and support (Scharf et al. 2005; White 2001). As
als with ASD. Perhaps prior sibling caregiving experiences such, this period represents a critical time for understand-
and positive sibling relationships are not the driving force ing perceptions of family caregiving role benefits, ASD-
behind intention to provide caregiving in adulthood given benefits, and intention to provide future caregiving. How-
the practical realities TDS face with regards to the need for ever, the stage-salient tasks of emerging adulthood may be
them to serve as caregivers for adult siblings with disabilities masking associations between sibling-focused parentifica-
(e.g., Bigby 1998). tion and benefits and caregiving intentions, or augmenting
Although the present study suggests that parent-focused the risk associated with parent-focused parentification. For
parentification is associated with fewer positive perceptions example, although the present study suggests that sibling-
of caregiving roles and a lesser intention to provide future focused parentification is not associated with perceptions
caregiving, this effect was small and TDS still reported rela- of benefits, it is possible that this association may emerge
tively high levels of caregiving intention. Together, perhaps later in development. Prior research has noted that length
these findings reflect the need for TDS to provide future care of time spent coping with disability is associated with the
(e.g., Heller and Arnold 2010) rather than desire. Therefore, emergence of benefit finding (Helgeson et al. 2006). Notably,
future research should extend the findings of the present research on TDS benefit finding focuses on benefits noted

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Journal of Autism and Developmental Disorders

by adults reflecting on their own experiences or relies on in addition to our suggestion to examine benefit finding later
parental perceptions of TDS benefits, and the emergence in development, it would also be useful to assess age-related
of positive outcomes associated with parentification roles changes in perceptions of benefits earlier in development.
are first noted in adulthood (Nuttall and Valentino 2017). Rutter (1985) suggests that developmental capacity influ-
As such, it is unclear how early in development perceptions ences children’s ability to process stressful life events and
of benefits are developed but perceiving positive benefits finding meaning in these events. Relatedly, it is also unclear
appears to be a phenomenon of adulthood. It is possible that how intentions to provide caregiving may change over time.
during the stage-salient task of individuation from the family We found that TDS of individuals with ASD reported less
during early emerging adulthood (Arnett 2000) TDS are less intention to provide caregiving for their siblings than pub-
able to recognize benefits associated with familial caregiving lished reports of TDS’ intention to provide future caregiving
roles and with ASD when reflecting on their familial experi- to siblings with Down syndrome. However, our finding is
ences. For example, during adolescence, TDS report feeling potentially limited in that caregiving intentions among TDS
conflicted between wanting to be involved in their family and of individuals with Down syndrome were assessed in a sam-
wanting to distance themself from their family (Cridland ple with a much broader age range (age 12–61 years; Skotko
et al. 2016). While the present study provides an important et al. 2011) than our emerging adult sample. Although
illustration of TDS’ experiences during emerging adulthood, research with TDS suggests that in childhood TDS display
it would be informative to examine these same hypotheses a high level of awareness of the future caregiving needs of
later in adulthood to understand if and how perceptions of their siblings (Eisenberg et al. 1998), intention to provide
benefits and intention to provide caregiving may shift across caregiving in adulthood may increase as parents age and the
development in adulthood. necessity of the TDS’ caregiving role becomes more salient.

Limitations and Additional Future Directions

Conclusions and Clinical Implications
The present study is limited by the use of a single reporter
and retrospective reports of childhood experiences. For Given that adult TDS are important caregivers of individu-
example, given our focus on the experience of the TDS, als with disabilities, particularly as parents age (Heller and
we did not evaluate the quality of the caregiving provided Arnold 2010), the present study has important intervention
by TDS in childhood. In the future it would be useful to implications for potentially improving the future caregiving
additionally assess the quality of caregiving provided by intentions of TDS. Given our identification of a mechanism
TDS from additional report sources, e.g., individual with of risk, supportive interventions aimed at improving parental
ASD, parent, and/or non-family members such as teachers maintenance of appropriate parent–child role boundaries in
or service providers. Moreover, because we were only able childhood may improve TDS perceptions of caregiving roles
to collect data from emerging adult TDS and not their sib- and, in turn, willingness to provide caregiving to siblings
lings with ASD, we were unable to examine any potential in the future. For example, improving supports available
influences of the symptom severity of the sibling with ASD. to parents may reduce the need for parents to rely on their
TDS experience of parentification, caregiving intentions, children’s support (McMahon and Luthar 2007). Even when
and perceptions of benefits might be influenced by symptom the stress of parenting a child with ASD is such that parents
severity. For example, in the broader post-traumatic growth must rely on the support of TDS, TDS may view their roles
and benefit finding literature, severity of illness is associ- as more fair when parents are also supported by the extended
ated with an individual’s degree of benefit finding (Helgeson family (Katz and Nelson 2007), and youth perception of
et al. 2006). Future work would be strengthened by addi- their roles as fair is protective against risk (Kuperminc et al.
tionally assessing the sibling with ASD. Such a direction 2009). As such, increasing the support network of individu-
would also allow for confirmation of the ASD diagnosis. We als with ASD beyond that of parents and siblings to include
relied on TDS’ self-reports of their sibling’s ASD diagno- extended family and community supports may be beneficial
sis. Although this was likely sufficient in the present study to TDS in addition to benefiting individuals with ASD and
given our focus on the TDS’ perceptions of their experi- their parents (e.g., Hare et al. 2004).
ences, future research would be strengthened by confirming Finally, perception of stressors as negative is associated
ASD diagnosis. with the accumulation of risk (Rutter 1981). Therefore,
The present study is limited by its cross-sectional design. improving perceptions of parentification experiences may
Cross-sectional analyses of mediation effects may result in also be a useful intervention approach for TDS. Moreover,
biased estimates (Maxwell and Cole 2007). Because of the although perceptions of ASD benefits did not mediate the
limitations of cross-sectional data, we were unable to exam- association between either parent-focused parentification
ine changes in constructs of interest over time. For example, or sibling-focused parentification and intention to provide

13
 Journal of Autism and Developmental Disorders

caregiving to siblings with ASD, perceptions of ASD ben- Ekas, N. V., Timmons, L., Pruitt, M., Ghilain, C., & Alessandri,
efits were associated with intention to provide caregiving M. (2015). The power of positivity: Predictors of relationship
satisfaction for parents of children with autism spectrum dis-
in the future. As such, improving perceptions of benefits order. Journal of Autism and Developmental Disorders, 45(7),
associated with having a sibling with ASD may prove use- 1997–2007. https://doi.org/10.1007/s10803-015-2362-4.
ful in improving intentionality to provide future caregiving. Hannah, M. E., & Midlarsky, E. (2005). Helping by siblings of
children with mental retardation. American Journal on Mental
Author Contributions AKN conceived of the study and its design and Retardation, 110(2), 87–99. https://doi.org/10.1352/0895-8017.
coordination, performed the statistical analysis, and drafted the manu- Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004).
script; BC assisted with the drafting of the manuscript; SJD assisted The health and social care needs of family carers supporting
with the drafting of the manuscript; All authors read and approved the adults with autistic spectrum disorders. Autism, 8, 425–444.
final manuscript. https://doi.org/10.1177/1362361304047225.
Helgeson, V. S., Reynolds, K. A., & Tomich, P. L. (2006). A meta-
analytic review of benefit finding and growth. Journal of Con-
Funding This project was funded, in part, by a grant from the Dr. Gwen sulting and Clinical Psychology, 74(5), 797–816. https://doi.
Andrew Faculty Initiatives Fund awarded to Amy K. Nuttall by the org/10.1037/0022-006X.74.5.797.
College of Social Science at Michigan State University. Heller, T., & Arnold, C. K. (2010). Siblings of adults with devel-
opmental disabilities: Psychosocial outcomes, relation-
ships, and future planning. Journal of Policy and Prac-
tice in Intellectual Disabilities, 7, 16–25. https://doi.
org/10.1111/j.1741-1130.2010.00243.x.
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