Examining the associations among knowledge,empowerment,and advocacy among parents of transition-aged youth with autism

Abstract

Parents of individuals with autism face many challenges in accessing appropriate services and supports for their offspring. Parents also play vital roles in advocating for their offspring’s rights and needs. Furthermore, despite advocacy programs becoming increasingly common, it remains unclear how to best foster advocacy among parents of individuals with autism. To this end, we examined the associations among knowledge, empowerment, and three types of advocacy activities (i.e. individual, peer, and systemic) among 185 parents of transition-aged youth with autism using structural equation modeling. Results show that empowerment has a greater impact on advocacy than knowledge. Significant direct and indirect effects of individual advocacy activities on peer advocacy activities, and peer advocacy activities on systemic advocacy activities were also confirmed. Implications for research and practice are discussed.

Lay abstract

Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children’s rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents’ knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.

Keywords

advocacy autism empowerment knowledge parents transition

While parenting a child with autism can bring many benefits, parents of individuals with autism often face a range of systemic barriers, including difficulty accessing appropriate services (Casagrande & Ingersoll, 2017). To access services, parents often must become both knowledgeable about services and empowered to use that information so they can advocate for their children’s rights and needs as well as for the autistic community as a whole (Smith-Young et al., 2022). To this end, over the last decade, parent advocacy programs have become increasingly common (Burke, 2013). Yet, there is great variability in the content of advocacy programs (Rios & Burke, 2021). Such variability is especially prevalent in relation to parent advocacy for transition-aged youth with autism given the potential tension from differing perspectives between parents and their offspring with autism (Burke et al., 2019). Self-advocacy programs for transition-aged youth are increasingly common and effective in helping youth reach their goals (Shogren et al., 2023). However, research suggests that parent advocacy remains important among transition-aged youth with disabilities (Lee et al., 2022) and better preparing parents to advocate can increase access to needed services (Taylor et al., 2017). Given the complexity and intersectionality of knowledge, empowerment, and advocacy, it is crucial to understand the associations of these constructs among parents of transition-aged youth with autism. Indeed, the transition to adulthood is a particularly important time to examine these associations as there is an increasing focus on developing youth advocacy (Alsaeed et al., 2023) but parent advocacy continues to matter. The purpose of this study was to examine the associations across knowledge, empowerment, and advocacy.

Parent knowledge is critical to advocating for adult disability services. Greater knowledge about disability services contributes to a better understanding of the son’s or daughter’s needs, enabling parents to feel more empowered and, subsequently, become better advocates (Mueller, 2017; Rios & Burke, 2021). In a study of Latino parents of transition-aged youth with autism, parents reported struggling to learn about adult disability services (Aleman-Tovar et al., 2022). Even with some minimal training, participants reported needing more knowledge about adult disability services to be able to successfully advocate for their offspring. Due to the complexity of adult disability service delivery systems, the impact of parental knowledge may be especially pertinent when considering the different types of advocacy (i.e. individual, peer, and systemic) for individuals with autism.

Empowerment is also critical for advocacy for individuals with autism. Put simply, empowerment is the channeling of resources (e.g. knowledge) into positive change (Gutiérrez et al., 1998). Operationally, empowerment may manifest as participation in decision-making, collaboration with others, having a sense of control, accessing resources, and conducting personal actions (Wright & Taylor, 2014). In the context of autism, empowerment encompasses a combination of knowledge, attitudes, and behaviors that enables parents to meet their families’ daily needs (Casagrande & Ingersoll, 2021). The benefits of empowerment include improved outcomes for the child with disability (e.g. improved social and communication skills) as well as better outcomes for the family (e.g. reduced parental stress; Weiss et al., 2012). Empowerment can occur at various levels, including the family, service delivery system, and community or political process (Koren et al., 1992). With respect to families of individuals with autism, prior research suggests that empowerment facilitates individual outcomes such as improved family resilience (Weiss et al., 2012) and, among families of transition-aged youth, increased access to disability services (Taylor et al., 2017). Empowered parents are also more likely to become effective advocates (Trainor, 2010). However, it remains unclear the ways in which empowerment directly influences individual, peer, and systemic advocacy.

Parental advocacy is often critical for individuals with autism and their families. Indeed, parental advocacy is positively associated with access to both school-based and adult services, including education and health care (Burke et al., 2016; Lee et al., 2022). According to the taxonomy of advocacy development proposed by Balcazar and colleagues (1996), there are three developmental stages for advocates: beginner (for individual advocacy), involved (for peer advocacy), and activist (for systemic advocacy). Specifically, individual advocacy initially involves parents actively seeking and securing appropriate services, resources, and accommodations to meet their child’s needs (Burke, 2012). Then, after first advocating for their own children, some parents may engage in advocacy beyond activities for their own child such as peer advocacy by advocating for other families of individuals with disabilities (Burke et al., 2019). Finally, some parents may engage in systemic advocacy by advocating for systemic change for all individuals with disabilities (Trainor, 2010).

The associations among knowledge, empowerment, and advocacy are complex and interrelated (Burke et al., 2019). Knowledge is a critical foundation for empowerment, enabling parents to make informed decisions and advocate effectively for their children (Koren et al., 1992). Empowerment, in turn, influences parents’ ability and motivation to pursue advocacy, which can lead to better access to resources and services for their children (Trainor, 2010). In a recent study examining the efficacy of a legislative advocacy program, intervention group participants demonstrated increased knowledge and empowerment and engaged in more legislative advocacy activities, such as contacting policymakers or engaging in some form of civic engagement (Burke et al., 2021, 2022). However, the relation between these constructs is not straightforward; specifically, the associations among these constructs have not been empirically established.

By understanding the interplay among knowledge, empowerment, and advocacy, programs can be developed to target the right construct which, in turn, should influence the remaining constructs—all of which are necessary to increasing access to services for autistic youth. Unfortunately, none of the extant literature has examined knowledge and empowerment in relation to the three levels of advocacy. By understanding the direct and indirect effects among knowledge, empowerment, and advocacy, we can help elucidate the pathways to the highest levels of advocacy. This information can allow us to meet families where they are in advocacy programs and provide evidence-based information to help them reach the next level of advocacy. Thus, in this study, we sought to investigate the effects of knowledge and empowerment on three types of advocacy activities (i.e. individual, peer, and systemic) for parents of transition-aged youth with autism. The following questions were explored with regard to parents of transition-aged youth with autism: (a) What is the nature of correlations among knowledge, empowerment, and advocacy activities? and (b) what are the mediating effects among knowledge, empowerment, and each of the three types of advocacy activities? Based on prior literature (e.g. Burke et al., 2019, 2021; Taylor et al., 2017), we hypothesized that empowerment (vs knowledge) would strongly impact individual advocacy. We also hypothesized that individual and peer advocacy activities would strongly relate to systemic advocacy activities. Our hypotheses loosely align with Kanter’s (1977, 1993) model of power wherein power is the ability to mobilize information to cause action. Applied to our study, we propose that knowledge and, to a greater extent empowerment, will be associated with greater advocacy activities.

Method

Participants

A total of 185 participants were included in this study. Eligibility criteria for the study were (a) parent or legal guardian of a youth with autism who was 16–26 years of age; (b) parent provided medical, psychological, and/or educational documentation of their youth’s autism diagnosis; (c) parent was able to attend a 12-week advocacy program; and (d) youth had lifetime scores on the Social Communication Questionnaire (SCQ; Rutter et al., 2003)—a parent report screener for autism—of 12 or greater, indicating a likelihood of autism (a cut-off of 12 is recommended for samples that include adults with intellectual disabilities; Brooks & Benson, 2013). All participants were parents of transition-aged youth with autism. Most of the participants were female (89.7%; n = 166) and averaged 51.7 years of age (SD = 6.33), with a range from 37 to 71 years. The majority of respondents were White (84.3% or n = 156), with smaller proportions identified as African American (8.1% or n = 15), Hispanic (7.6% or n = 14), Asian (3.2% or n = 6), and other ethnicities (2.2% or n = 4). Regarding the youth with autism, they were predominantly male (75.1%; n = 142) and averaged 20.1 years of age (SD = 2.75, range = 16–27 years). See Table 1 for full descriptive information.

Table 1.

Participants demographics.

Characteristic	% or $X$ (n or SD)
Age
Parent	51.7 (6.33)
Youth with autism	20.1 (2.75)
Parent (female)	89.7% (166)
Youth with autism (male)	75.1% (142)
Race/ethnicity^a
White	84.3% (156)
Black/African American	8.1% (15)
Hispanic/Latino	7.6% (14)
Asian/Pacific Islander	3.2% (6)
Other	2.2% (4)
Marital status (parent)
Married	67.6% (125)
Educational background (parent)
High school diploma (or equivalent)	4.9% (9)
Some college	14.6% (27)
Associate’s degree	9.7% (18)
Bachelor’s degree	38.4% (71)
Master’s degree	25.4% (47)
PhD or professional degree	5.9% (11)
Other	1.1% (2)
Household income
Less than $20,000	1.1% (2)
Between $20–40,000	9.7% (18)
Between $40–60,000	13.5% (25)
Between $60–80,000	14.1% (26)
Between $80–100,000	9.2% (17)
More than $100,000	52.4% (97)

SD: standard deviation.

Percentages do not add up to 100% as participants could choose to check multiple responses.

Recruitment and procedures

Data were collected as part of a randomized controlled trial (RCT) to investigate the impact of a parent advocacy intervention among parents of transition-aged youth with autism (Taylor et al., 2021). The parent advocacy intervention comprised 24 h of instruction about the adult disability service delivery system (see Taylor et al., 2021, for more detail). Participants were recruited from three states in the United States (Illinois, Tennessee, and Wisconsin) through email circulations and postings to autism studies, research registries, disability agencies, school personnel, and autism support groups. Data used in this analysis were collected from participants at baseline (prior to receiving any intervention) via an online survey. Approval from the University Institutional Review Board was obtained for all study procedures and written consent was obtained from all participants.

Measures

Adult Disability Services Knowledge Scale

This measure, collected via an online survey, consisted of 22 multiple-choice questions about adult disability services. Example questions included the following: “During the trial work period, how long can an individual with a disability work without receiving any cut to their Social Security Disability Insurance (SSDI) benefits?”; “How can you apply for a housing voucher?”; and “Under the current provision, to which office do you apply for Medicaid waiver services?” Each response was coded as either “correct” (1) or “incorrect” (0), with potential scores ranging from 0 through 22 and higher scores equaling greater knowledge of the adult disability system. Floor and ceiling effects were avoided in this sample, with ranges from 3 to 20 (Mdn = 11, interquartile range (IQR) = 9–13) at baseline.

Family Empowerment Scale

Family empowerment was measured via an online survey using the 34-item Family Empowerment Scale (FES; Koren et al., 1992). The FES measures the extent to which parents feel empowered across three dimensions: family, the service system, and the larger community as well as the political environment. Items are rated on a 5-point Likert-type scale from not at all true (1) to very true (5). We slightly modified the wording of the items to be relevant to parents of young adults (vs parents of children, for whom the measure was originally developed). For example, instead of “I believe I can solve problems with my child when they happen,” the modified version says, “I believe I can solve problems with my son/daughter when they happen.” Item scores are summed to form an overall score, with higher scores indicating greater empowerment. For this sample, Cronbach’s alpha was .93.

Advocacy Activities Scale

The Advocacy Activities Scale (Li et al., in press) was developed based on established measures about parental advocacy for special education rights (e.g. Burke et al., 2016) and the literature about advocacy for adults with disabilities (e.g. Balcazar et al., 1996). The current measure comprised 15 items (individual advocacy = 7 items, peer advocacy = 3 items, systemic advocacy = 5 items) to which participants responded on a 5-point Likert-type scale ranging from not at all (1) to very often (5). The summed score for each subscale was used to measure the level of involvement in parental advocacy activities, with higher scores equating to more involvement. Reliability was high for all three subscales: individual advocacy (α = 0.82), peer advocacy (α = 0.81), and systemic advocacy (α = 0.85).

Analysis

The associations among knowledge, empowerment, and three types of advocacy activities (i.e. individual, peer, and systemic) were examined using structural equation modeling (SEM) analyses. All analyses were conducted using Mplus (Muthén & Muthén, 2007). The full model consisted of one independent variable (i.e. knowledge) and four dependent variables (i.e. empowerment, individual advocacy, peer advocacy, and systemic advocacy) along with the mediating relationships among the five variables. The distribution of the identified variables in this study violated the assumption of normality. Therefore, bootstrap resampling procedures and estimators were used to increase the robustness of non-normality (Muthén et al., 2016). No multicollinearity was found between variables. In addition, demographic characteristics, including age, gender, ethnicity, marital status, education, employment, and household income, were added as control variables in the full model (Brian et al., 2017).

The model-data fit was evaluated by the standardized root mean square residual (SRMR), root mean square error of approximation (RMSEA), comparative fit index (CFI), and the Tucker–Lewis index (TLI). RMSEA is an absolute fit index which compares the hypothesized model with a perfect-fit model. CFI and TLI are incremental fit indices that compare the hypothesized model with a null model (i.e. a model where all variables are not correlated) that provides the worst fit. To evaluate whether the model fit was satisfactory, the chi-square statistic (p > 0.05 suggests failing to reject the model) in conjunction with CFI (>0.95), TLI (>0.95), SRMR (<0.08), and RMSEA (<0.06) were utilized to indicate an acceptable model fit (Hooper et al., 2008).

Positionality and reflexivity

As researchers, we acknowledge that our positionality influences the research process and outcomes. Our team included individuals from each gender and racial group; also, our team included family members of individuals with autism. Despite our diverse team, we recognize that our positionality may still create biases in our understanding of the experiences and perspectives of others. As a team, we each believe in the importance of developing parents’ knowledge, advocacy, and empowerment to better support their sons and daughters with autism. To address our biases, throughout data collection and analyses, we were reflexive and critical of our assumptions and values. We met weekly to discuss data collection and analysis, thereby providing opportunities for us to identify and address our positionality. Also, throughout the process of the project, we sought feedback and input from diverse sources and community members.

Results

Nature of the correlations among knowledge, empowerment, and advocacy activities

Descriptive statistics for knowledge, empowerment, and advocacy activities are presented in Table 2. Spearman’s correlations were used to assess the associations among knowledge, empowerment, individual advocacy, peer advocacy, and systemic advocacy. As hypothesized, there were statistically significant strong associations among empowerment and individual advocacy, peer advocacy and systemic advocacy ( ${r^{'}}_{s}$ = 0.51–0.56). To a lesser extent, there were statistically significant weak to moderate associations among knowledge and individual, peer and systemic advocacy ( ${r^{'}}_{s}$ = 0.12–0.20). There were also statistically significant strong associations among individual advocacy, peer advocacy, and systemic advocacy ( ${r^{'}}_{s}$ = 0.53–0.60).

Table 2.

Descriptive statistics and correlations of knowledge, empowerment, and advocacy activities.

	KN	EP	IA	PA	SA	$X$	SD	Range
Knowledge	–	–	–	–	–	11.43	3.426	3–20
Empowerment	0.144*	–	–	–	–	125.18	17.308	75–168
Individual advocacy	0.200**	0.564**	–	–	–	16.65	4.581	7–28
Peer advocacy	0.120	0.511**	0.528**	–	–	4.43	1.941	3–12
Systemic advocacy	0.172*	0.533**	0.577**	0.604**	–	6.51	2.558	5–17

SD: standard deviation.

p < 0.05. **p < 0.01.

The fit of the hypothesized model was examined. The full model showed exceptional fit, $χ^{2}$ (1) = 3.613, p = 0.057, SRMR = 0.019, RMSEA = 0.019, CFI = 0.991, and TLI = 0.994. See Figure 1. For direct effects, the SEM model showed that knowledge had a statistically significant positive relation with empowerment (β = 0.17, p < 0.05), individual advocacy (β = 0.14, p < 0.05), and peer advocacy (β = 0.12, p < 0.05); however, no statistically significant relation was indicated for systemic advocacy. Empowerment was demonstrated to positively associate with increased individual advocacy (β = 0.55, p < 0.001), peer advocacy (β = 0.26, p < 0.001), and systemic advocacy (β = 0.15, p < 0.05). When examining the paths between the three types of advocacy activities, the SEM model revealed that individual advocacy was positively correlated with peer advocacy (β = 0.40, p < 0.001) and peer advocacy was positively correlated with systemic advocacy (β = 0.55, p < 0.001). See Table 3.

Figure 1.

Structural model with significant paths.

Table 3.

Full model statistics of direct, indirect, and total effects.

Path	β	t	p
Effects from knowledge to individual advocacy
Indirect effect via empowerment	0.091	2.276	0.023*
Direct effect	0.138	2.295	0.022*
Total effect	0.229	3.284	<0.001***
Effects from knowledge to peer advocacy
Indirect effect via individual advocacy	0.055	2.143	0.032*
Indirect effect via empowerment	0.042	1.974	0.048*
Direct effect	0.121	2.056	0.040*
Total effect	0.255	3.713	<0.001***
Effects from knowledge to systemic advocacy
Indirect effect via individual advocacy	0.018	1.467	0.142
Indirect effect via peer advocacy	0.067	1.997	0.046*
Indirect effect via empowerment	0.025	1.639	0.101
Direct effect	–0.024	-.449	0.654
Total effect	0.172	2.412	0.016*
Effects from empowerment to peer advocacy
Indirect effect via individual advocacy	0.220	5.117	<0.001***
Direct effect	0.256	3.716	<0.001***
Total effect	0.476	8.504	<0.001***
Effects from empowerment to systemic advocacy
Indirect effect via individual advocacy	0.071	1.880	0.060
Indirect effect via peer advocacy	0.142	3.461	<0.001***
Direct effect	0.148	2.322	0.020*
Total effect	0.483	8.535	<0.001***
Effects from individual advocacy to peer advocacy
Total effect	0.402	5.669	<0.001***
Effects from peer advocacy to systemic advocacy
Total effect	0.554	8.532	<0.001***

p < 0.05. ***p < 0.001.

Mediating effects among knowledge, empowerment, and advocacy activities

In terms of mediating effects, knowledge was associated with greater individual advocacy and peer advocacy through the presence of empowerment (i.e. an indirect effect: β = 0.09, p < 0.05 for individual advocacy; β = 0.04, p < 0.05 for peer advocacy). In other words, parents who were more knowledgeable were likely to be more empowered, and empowered parents were more likely to advocate for their child with autism as well as for other families. In addition, knowledge was associated with greater peer advocacy when individual advocacy was present (β = 0.055, p < 0.05). Empowerment was associated with greater peer advocacy through the presence of individual advocacy (β = 0.220, p < 0.001) and higher levels of systemic advocacy through the presence of peer advocacy (β = 0.142, p < 0.001). Put simply, parents who were more empowered were more likely to advocate at higher levels (i.e. peer advocacy and systemic advocacy) if they had also advocated at a lower level (i.e. individual advocacy and peer advocacy). See Table 3.

Discussion

Extant research is clear that knowledge, empowerment, and advocacy matter in relation to access to services among youth with autism and their families. However, the interplay among these variables is unclear. Our findings align with Kanter’s (1977, 1993) theory about power and our corresponding hypotheses. Altogether, this study contributed to the extant literature in two ways. First, while the constructs were inter-related, empowerment (vs knowledge) was more strongly associated with all three types of advocacy activities. In a study of the effectiveness of an advocacy program, Taylor and colleagues (2016) found that changes in empowerment were more strongly related to service access than changes in knowledge. Thus, this study’s findings underscore the importance of empowerment. Furthermore, this study contributes to the literature by finding that empowerment may first contribute to advocacy activities (which, presumably, could then lead to increased access to services).

These findings have direct implications for the increasingly common advocacy programs. Notably, advocacy programs are emerging not only in the United States but also globally (e.g. in Chile, Tenorio et al., 2022). Most advocacy programs have little published data documenting their effectiveness (Goldman, 2020). Our study suggests that when considering the effectiveness of programs in improving parents’ ability to advocate, it is critical to determine their effect not only on knowledge but also on empowerment. Much research has been conducted on the importance of empowerment for parents of children with disabilities (e.g. Wright & Taylor, 2014). However, it is less clear how advocacy programs may impact empowerment and to what extent advocacy programs attract individuals who, at baseline, already have high levels of empowerment (i.e. are very empowered). More research is needed to examine the relation between empowerment and advocacy activities, especially in the context of advocacy programs. In light of this study’s findings, practitioners should ensure that advocacy programs focus on empowering families. More so than didactically teaching parents about disability service systems, advocacy programs need to foster parental empowerment. To this end, advocacy program content may need to include ice-breakers, case studies, and role-plays to foster empowerment.

Second, the significant inter-relations from one stage of advocacy to the next (i.e. individual advocacy to peer advocacy and peer advocacy to systemic advocacy) while constraining the relation between individual and systemic advocacy suggest that peer advocacy is a necessary step before pursuing systemic advocacy. This finding is interesting as, when considering the literature about advocacy, most research focuses on individual advocacy or systemic advocacy (Burke et al., 2016). Given this study’s findings, peer advocacy is an important intermediary step in bridging the gap between individual and systemic advocacy. Thus, more research about peer advocacy as a distinct construct and its relationship with individual and systemic advocacy is needed.

To that end, it is important to explore the nature of peer advocacy. In the United States, there has been an increasing emphasis on family navigator programs (e.g. Broder-Fingert et al., 2020; Burke et al., 2016; Feinberg et al., 2016; Magaña et al., 2017). Ultimately, the goal of these programs is to help access services. While family navigator programs are also becoming increasingly common, little is known about the attributes of the navigator that makes navigation effective. For example, some navigators are trained social workers in hospital settings (Feinberg et al., 2016) while other navigators are parents of children with disabilities (Magaña et al., 2017). Our study’s findings suggest that parents who are more empowered are likely to advocate for their peers (i.e. other families of individuals with disabilities). Thus, while not directly examining differences between navigators who are (and are not) family members of individuals with disabilities, our study suggests that peer advocacy may come more naturally to navigators with lived experiences as parents of individuals with disabilities. Furthermore, our study signals the importance of peer advocates especially when considering the need for systemic reform.

Finally, the two most pertinent mediating effects both stemmed from the construct of empowerment, demonstrating greater peer advocacy (when individual advocacy was present) and systemic advocacy (when peer advocacy was present), further reinforcing the key role of empowerment and the nature of advocacy development in this context. This may be because empowered individuals who already have experience advocating for their own child’s needs (or on behalf of other families) would more easily acquire the skills and confidence necessary to engage in higher levels of advocacy (i.e. peer advocacy and systemic advocacy; Rossetti et al., 2020). In this sense, the aforementioned process in which peer advocacy acts as a bridge between individual and systemic advocacy becomes even further enhanced when the individuals are empowered. Therefore, in addition to the importance of empowerment on advocacy efforts, this might be indicative that specific types of advocacy programs (e.g. legislative advocacy program; Burke et al., 2022) could have greater efficacy when they are targeted to individuals based on their prior experiences with advocacy activities.

Limitations

While an important launching point, this study has a few limitations. First, the cross-sectional design of the study limits our inferences on the directionality of the relationships among knowledge, empowerment, and advocacy. Future research should employ longitudinal designs to help discern causality among the constructs. Second, the data that were collected and analyzed for this study relied on self-report. Observations of advocacy activities may provide a further understanding of the individual, peer, and systemic advocacy activities of the participants. Third, our study was limited to individuals registered for a parent advocacy program who were mainly White and female. Such individuals may not be representative to the population of parents of individuals with autism and, thus, the findings may not be generalizable. It is important to explore these relationships among more diverse groups in different contexts.

Implications for research and practice

It is important to determine whether the associations among knowledge, empowerment, and advocacy activities found in this study are generalizable to parents of autistic youth. In this study, the sample was primarily White, female, and well-educated. Thus, the sample does not reflect the racial and ethnic diversity of parents of children with autism especially in the United States where Black and Latinx children have been shown to have the fastest-growing autism prevalence rates (Nevison & Zahorodny, 2019). Furthermore, aside from the challenge of greater service disparities (Magaña et al., 2015; Pearson, 2019), families of color with children with autism also face systemic barriers hampering their involvement (e.g. advocacy; Burke et al., 2020). To address such disparities, advocacy programs need to be culturally responsive. By testing these associations with a more diverse and representative sample, we can discern whether empowerment indeed is the primary target for intervention to improve advocacy activities.

The strong association between empowerment and advocacy activities may have tremendous implications for practitioners, especially Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs). Altogether, there are more than 83 PTIs and CPRCs across the United States whose primary mission is to educate and empower families of children with disabilities. PTI and CPRC staff may want to carefully examine their advocacy programming to ensure that the emphasis is on empowerment with a lesser (but not absent) focus on knowledge. To this end, PTIs and CPRCs may consider shifting the proportion of their training content from educating families about their rights to empowering families to have greater control in decision-making for their children with disabilities. Notably, a focus on empowerment must consider the context of parents of children with disabilities—families who are often overextended and may be frustrated by additional demands (Wright & Taylor, 2014).

Relatedly, practitioners who are instituting legislative advocacy programs may consider whether there should be mandated prior experience with individual and peer advocacy among the participants. To ensure the legislative program to be most effective, it may be appropriate to limit attendance to parents who reportedly have advocated for their own children with disabilities as well as for other families. Indeed, our study suggests that stratifying the attendance at certain types of advocacy programs may help ensure their optimal effectiveness.

Footnotes

Acknowledgements

The authors are grateful to the families who volunteered their time to participate in the project.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the National Institute of Mental Health (Grant No. R01 MH116058, PI: Taylor).

ORCID iD

Chak Li

References

Aleman-Tovar

Rios

Burke

M. M.

(2022). Transition planning: Knowledge and preferences of Latinx families of youth with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 60(2), 128–144. https://doi.org/10.1352/1934-9556-60.2.128

Alsaeed

Mansouri

M. C.

Shogren

K. A.

Raley

S. K.

Kurth

J. A.

Leatherman

E. M.

Lockman Turner

(2023). A systematic review of interventions to promote self-determination for students with extensive support needs. Research and Practice for Persons with Severe Disabilities, 48(1), 3–24.

Balcazar

F. E.

Keys

C. B.

Bertram

J. F.

Rizzo

(1996). Advocate development in the field of developmental disabilities: A data-based conceptual model. Mental Retardation-Washington, 34(6), 341–351.

Brian

Goodway

J. D.

Logan

J. A.

Sutherland

(2017). SKIPing with teachers: An early years motor skill intervention. Physical Education and Sport Pedagogy, 22(3), 270–282. https://doi.org/10.1080/17408989.2016.1176133

Broder-Fingert

Stadnick

N. A.

Hickey

Goupil

Diaz Lindhart

Feinberg

(2020). Defining the core components of family navigation for autism spectrum disorder. Autism, 24(2), 526–530. https://doi.org/10.1177/1362361319864079

Brooks

W. T.

Benson

B. A.

(2013). The validity of the Social Communication Questionnaire in adults with intellectual disability. Research in Autism Spectrum Disorders, 7(2), 247–255. https://doi.org/10.1016/j.rasd.2012.10.002

Burke

M. M.

(2012). Examining family involvement in regular and special education: Lessons to be learned for both sides. International Review of Research in Developmental Disabilities, 43, 187–218.

Burke

M. M.

(2013). Improving parental involvement: Training special education advocates. Journal of Disability Policy Studies, 23(4), 225–234. https://doi.org/10.1177/1044207311424910

Burke

M. M.

Goldman

S. E.

Hart

M. S.

Hodapp

R. M.

(2016). Evaluating the efficacy of a special education advocacy training program. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 269–276. https://doi.org/10.1111/jppi.12183

10.

Burke

M. M.

Lee

C. E.

Hall

S. A.

Rossetti

. (2019). Understanding decision making among individuals with intellectual and developmental disabilities (IDD) and their siblings. Intellectual and Developmental Disabilities, 57(1), 26–41. https://doi.org/10.1352/1934-9556-57.1.26

11.

Burke

M. M.

Rios

Garcia

Magaña

(2020). Examining differences in empowerment, special education knowledge, and family-school partnerships among Latino and White families of children with autism spectrum disorder. International Journal of Developmental Disabilities, 66(1), 75–81.

12.

Burke

M. M.

Rios

Lee

C. E.

(2019). Exploring the special education advocacy process according to families and advocates. The Journal of Special Education, 53(3), 131–141. https://doi.org/10.1177/0022466918810204

13.

Burke

M. M.

Rossetti

(2021). Examining the effectiveness of a legislative advocacy program for parents of individuals with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 19(3), 270–276.

14.

Burke

M. M.

Rossetti

(2022). The efficacy and impact of a special education legislative advocacy program among parents of children with disabilities. Journal of Autism and Developmental Disorders, 52(7), 3271–3279.

15.

Casagrande

Ingersoll

B. R.

(2021). Improving service access in ASD: A systematic review of family empowerment interventions for children with special healthcare needs. Review Journal of Autism and Developmental Disorders, 8, 170–185. https://doi.org/10.1007/s40489-020-00208-9

16.

Casagrande

K. A.

Ingersoll

B. R.

(2017). Service delivery outcomes in ASD: Role of parent education, empowerment, and professional partnerships. Journal of Child and Family Studies, 26, 2386–2395. https://doi.org/10.1007/s10826-017-0759-8

17.

Feinberg

Abufhele

Sandler

Augustyn

Cabral

Chen

Diaz Linhart

Cesar Levesque

Aebi

Silverstein

(2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912–915. https://doi.org/10.1176/appi.ps.201500162

18.

Goldman

S. E.

(2020). Special education advocacy for families of students with intellectual developmental disabilities: Current trends future directions. International Review of Research in Developmental Disabilities, 58, 1–50.

19.

Gutiérrez

L. M.

Parsons

R. J.

Cox

E. O.

(1998). Empowerment in social work practice: A sourcebook. Brooks/Cole.

20.

Hooper

Coughlan

Mullen

(2008). Evaluating model fit: A synthesis of the structural equation modelling literature. In Proceedings of the 7th European conference on research methodology for business and management studies (pp. 195–200). University of Dublin.

21.

Kanter

R. M.

(1977). Men and women of the corporation. Basic Books.

22.

Kanter

R. M.

(1993). Men and women of the corporation (2nd ed.). Basic Books.

23.

Koren

P. E.

DeChillo

Friesen

B. J.

(1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37(4), 305. https://doi.org/10.1037/h0079106

24.

Lee

C. E.

Burke

M. M.

DaWalt

L. S.

Taylor

J. L.

(2022). The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum. Autism, 26(4), 1001–1006. https://doi.org/10.1177/13623613211057660

25.

Burke

M. M.

Taylor

J. L.

DaWalt

L. S.

Rossetti

. (in press). Establishing an advocacy activities scale for parents of individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities.

26.

Magaña

Lopez

Machalicek

(2017). Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56(1), 59–74. https://doi.org/10.1111/famp.12169

27.

Magaña

Parish

S. L.

Son

(2015). Have racial and ethnic disparities in the quality of health care relationships changed for children with developmental disabilities and ASD? American Journal on Intellectual and Developmental Disabilities, 120(6), 504–513. https://doi.org/10.1352/1944-7558-120.6.504

28.

Mueller

T. G.

(2017). Promoting collaborative partnerships with families. In Kautham

J. M.

Hallaran

D. P.

Pullen

P. C.

(Eds.), Handbook of special education (pp. 773–792). Routledge.

29.

Muthén

B. O.

Muthén

L. K.

Asparouhov

(2016). Regression and mediation analysis using Mplus. Muthén & Muthén.

30.

Muthén

L. K.

Muthén

B. O.

(2007). Mplus user’s guide (6th ed.).

31.

Nevison

Zahorodny

(2019). Race/ethnicity-resolved time trends in United States autism prevalence estimates from IDEA and ADDM. Journal of Autism and Developmental Disorders, 49, 4721–4730.

32.

Pearson

J. N.

(2019). Highlighting efforts to support underrepresented families of children with autism through a community-engaged program. https://www.aaidd.org/education/events/2019/09/19/default-calendar/highlighting-efforts-to-support-underrepresented-families-of-children-with-autism-through-a-community-engaged-program

33.

Rios

Burke

M. M.

(2021). The Effectiveness of special education training programs for parents of children with disabilities: A systematic literature review. Exceptionality, 29(3), 215–231. https://doi.org/10.1080/09362835.2020.1850455

34.

Rossetti

Burke

M. M.

Rios

Rivera

J. I.

Schraml-Block

Hughes

Lee

J. D.

Aleman-Tovar

(2020). Parent leadership and civic engagement: Suggestions for the next individuals with disabilities education act reauthorization. Journal of Disability Policy Studies, 31(2), 99–111. https://doi.org/10.1177/1044207319901260

35.

Rutter

Bailey

Lord

(2003). SCQ: The Social Communication Questionnaire. Western Psychological Services.

36.

Shogren

K. A.

Mazzotti

V. L.

Hicks

T. A.

Raley

S. K.

Gerasimova

Pace

J. R.

Kwiatek

S. M.

Fredrick

Stewart-Ginsburg

J. H.

Chapman

Wysenski

(2023). The Goal Setting Challenge App: Impact on transition goal attainment outcomes of students with disabilities. Career Development and Transition for Exceptional Individuals. Advance online publication. https://doi.org/10.1177/21651434221146470

37.

Smith-Young

Chafe

Audas

Gustafson

D. L.

(2022). “I know how to advocate”: Parents’ experiences in advocating for children and youth diagnosed with autism spectrum disorder. Health Services Insights, 15, Article 1078803.

38.

Taylor

J. L.

Hodapp

R. M.

Burke

Rabideau

(2016, May 14). Ecological approaches to transition intervention in ASD: Training parents to more effectively navigate the adult service system [Conference session]. International Meeting for Autism Research, Baltimore, MD, United Sates.

39.

Taylor

J. L.

Hodapp

R. M.

Burke

M. M.

Waitz-Kudla

S. N.

Rabideau

(2017). Training parents of youth with autism spectrum disorder to advocate for adult disability services: Results from a pilot randomized controlled trial. Journal of Autism and Developmental Disorders, 47, 846–857. https://doi.org/10.1007/s10803-016-2994-z

40.

Taylor

J. L.

Pezzimenti

Burke

M. M.

DaWalt

L. S.

Lee

C. E.

Rabideau

(2021). Development, feasibility, and acceptability of a nationally relevant parent training to improve service access during the transition to adulthood for youth with ASD. Journal of Autism and Developmental Disorders, 52, 2388–2399. https://doi.org/10.1007/s10803-021-05128-z

41.

Tenorio

Aparicio

Arango

P. S.

Fernández

A. K.

Fergusson

Turull

Pizarro

(2022). PaísDI: Feasibility and effectiveness of an advocacy program for adults with intellectual disability and their stakeholders’ groups in Chile. Journal of Applied Research in Intellectual Disabilities, 35(2), 633–638. https://doi.org/10.1111/jar.12951

42.

Trainor

A. A.

(2010). Diverse approaches to parent advocacy during special education home—School interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47. https://doi.org/10.1177/0741932508324401

43.

Weiss

J. A.

Cappadocia

M. C.

MacMullin

J. A.

Viecili

Lunsky

(2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261–274. https://doi.org/10.1177/1362361311422708

44.

Wright

A. C.

Taylor

(2014). Advocacy by parents of young children with special needs: Activities, processes, and perceived effectiveness. Journal of Social Service Research, 40(5), 591–605. https://doi.org/10.1080/01488376.2014.896850