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. Author manuscript; available in PMC: 2022 May 1.
Published in final edited form as: Autism. 2021 Nov 29;26(4):1001–1006. doi: 10.1177/13623613211057660

Short Report: The Role of Parental Advocacy in Addressing Service Disparities for Transition-aged Youth on the Autism Spectrum

Chung eun Lee 1, Meghan M Burke 2, Leann Smith DaWalt 3, Chak Li 2, Julie Lounds Taylor 1,4
PMCID: PMC9010347  NIHMSID: NIHMS1750102  PMID: 34841922

Abstract

Youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. Correlates of service access identified in the literature – such as family resources, race/ethnicity, or youth functioning – can be difficult to change and may not be feasible targets for intervention. This study focused on a potential contributor to service access that is malleable: parental advocacy. Specifically, we examined the association between parental advocacy activities and number of services among transition-aged youth with ASD, after accounting for indicators of youth functioning and family demographic variables (high school exit, co-occurring intellectual disability, social impairments, adaptive behaviors, race/ethnicity, state of residence, family income, and parental depression). Participants included 185 families of youth with ASD who are part of an ongoing randomized controlled trial. Data were collected at baseline (prior to intervention) via parental questionnaire and structured interview. Using hierarchical regression analyses, we found that parental advocacy activities were significantly and strongly associated with service receipt after controlling for youth functioning and family demographic factors. Youth whose parents are less involved in advocacy activities might be at-risk for service disparities. To close the gaps for service disparities, future interventions may target parental advocacy skills.

Keywords: autism spectrum disorders, parental advocacy, service access, transition-aged youth

Lay Abstract

It can be difficult for youth on the autism spectrum to get the services they need after they leave high school. Because of this, many studies have examined the different factors that are related to service access. These studies have shown that youth on the autism spectrum who belong to an underrepresented racial or ethnic group or whose families have lower incomes are less likely to receive the services that they need. However, it is difficult or impossible to change things like race/ethnicity or family income. It is important to also identify factors that might improve service access that we can change. One potential factor that fits into this category is parental advocacy activities. Using data collected from 185 parents of youth on the autism spectrum, we found that more parental advocacy activities were related to youth receiving more services, even after accounting for variables related to the functioning of the youth (e.g., whether they have an intellectual disability, their autism symptom severity) and demographic information about the family (e.g., state in which they live, parental race/ethnicity, family income). Our findings suggest that building parental advocacy skills may be one important way to increase the number of services that youth on the autism spectrum receive as they transition to adulthood.

Individuals with autism spectrum disorder (ASD) often experience difficulties accessing disability services as they transition from school-based to adult service systems, as evidenced by declines in the number of services received and rising unmet service needs (e.g., Laxman et al., 2019; Shattuck et al., 2011; Taylor & Henninger, 2015). After leaving high school, these youth encounter an adult service system that is inadequately funded, fragmented, and difficult to navigate. Inability to access needed services can significantly impact the ability of adults with ASD to achieve their maximum level of independence (Taylor & Mailick, 2014). Thus, it is important to understand the factors that impact service access.

In the extant autism literature, socio-economic status, racial/ethnic identity, high school exit status, adaptive behavior, and co-occurring intellectual disability (ID) have all been associated with service access outcomes (e.g., Dudley et al., 2019; Laxman et al., 2019; Shattuck et al., 2011; Taylor & Henninger, 2015). These factors, however, are difficult or impossible to change (except for adaptive behavior). While previous research may help us identify those who are likely to be under-served, it does not provide many avenues for interventions to improve service receipt.

A malleable factor that might increase service access is parental advocacy. Advocacy is defined as speaking or acting on behalf of another person or group of people (Wolfensberger, 1975), and can encompass a broad range of activities such as pursuing education, direct help, or system-level change. Though it has not been directly examined among youth with ASD, parental advocacy has been shown to impact services and quality of care in other populations. Specifically, parental advocacy has been associated with children receiving more special education services (Burke et al., 2018; Rios et al., 2021) and better mental health services (Koroloff et al., 1996; Kutash et al., 2011). If parental advocacy predicts service access among youth with ASD, it can provide a potential point of intervention.

In this study, we examined the association between parental advocacy activities and the number of services received by transition-aged youth with ASD, controlling for known factors that impact service access (i.e., high school exit, co-occurring ID, social impairments, adaptive behaviors, race/ethnicity, family income). We hypothesized that youth would be receiving more services if their parents were participating in more advocacy activities.

Methods

Participants and Procedures

Participants included 185 parents (in two cases, grandparents) of transition-aged youth with ASD who are part of an ongoing randomized controlled trial (RCT) to test the impact of a parent advocacy intervention (Taylor et al., 2021). Families were recruited from three states in the U.S. (Illinois, Tennessee, Wisconsin) through autism studies, research registries, disability agencies, school personnel, and autism support groups. See Supplemental Material for eligibility criteria and a brief description of the intervention.

On average, parents were 51.7 years of age (SD = 6.3; range = 37.0 – 71.4). Most (89.7%, n = 166) identified as female and mothers. Approximately 84.3% (n = 156) of the sample was White, non-Hispanic, and just under 80% (79.4%; n = 147) had obtained a bachelor’s degree. Youth with ASD averaged 20.1 years of age (SD = 2.8, range = 16.2 – 26.8). Three-fourths were male (75.1%, n = 142) and 74.6% (n = 138) were White, non-Hispanic. About 40.0% (n = 74) had co-occurring ID, and 60.5% (n = 112) were enrolled in high school. See Supplemental Table 1 for full sample descriptive information.

Data used in this analysis were collected from participants at baseline (prior to receiving any intervention) via structured interview (in-person or online) and online survey. Approval from the University Institutional Review Board was obtained for all study procedures and written consent was obtained from all participants.

Measures

Number of Services.

Information about the number of services the youth with ASD was receiving was collected from parents via interview using questions from the National Longitudinal Transition Study-2 (NLTS-2). Participants responded either 1 = yes or 0 = no to whether they were currently receiving each of 21 services (e.g., speech/language services, psychological/mental health services or counseling, transportation; full list of services is provided in Supplemental Text). The sum of services received (0 to 21) was calculated as our measure of number of services.

Parental advocacy activities.

We assessed the extent and the types of advocacy-related activities parents have engaged in on behalf of their youth with ASD and/or others with disabilities. Modified from 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 was comprised of 16 items to which participants responded on a 4-point Likert scale (1 = not at all to 4 = very often). Items are listed in Table 1. A total score was used to measure the level of involvement in parental advocacy activities (higher scores = more involvement). High internal consistency was found in this sample (Cronbach’s alpha = .91).

Table 1.

Frequencies of Parental Advocacy Activities

To what extent have you… Responses % (n) M (SD)
Not at all A little Often Very often
1. Searched the internet to find agencies and/or services to meet your son / daughter's needs? 1.6% (3) 29.2% (54) 42.4% (78) 27.0% (50) 2.95 (.79)
2. Talked with other parents about agencies and/or services to meet your son / daughter's needs? 7.0% (13) 35.7% (66) 31.9% (59) 25.4% (47) 2.76 (.92)
3. Called adult service provider agencies to ask about eligibility and services? 24.3% (45) 39.5% (73) 23.8% (44) 12.4% (23) 2.24 (.96)
4. Attended trainings about adult services? 38.9% (72) 35.7% (66) 16.2% (30) 9.2% (17) 1.96 (.96)
5. Documented (i.e., put into writing) your advocacy/communication with agencies and professionals? 42.7% (79) 34.1% (63) 16.2% (30) 7.0% (13) 1.88 (.93)
6. Asked questions to professionals about services/eligibility? 7.0% (13) 36.2% (67) 37.3% (69) 19.5% (36) 2.69 (.86)
7. Talked with other parents (over the phone) about agencies and/or services to meet their child's needs? 27.6% (51) 39.5% (73) 20.5% (38) 12.4% (23) 2.18 (.98)
8. Talked with other parents in person about agencies and/or services to meet their child's needs? 21.1% (39) 45.4% (84) 22.7% (42) 10.8% (20) 2.23 (.91)
9. Led trainings or support groups for other families about adult services? 81.6% (151) 11.4% (21) 3.2% (6) 3.8% (7) 1.29 (.71)
10. Reviewed the records of another family to help them determine which services they are eligible for? 79.5% (147) 13.0% (24) 4.9% (9) 2.7% (5) 1.31 (.69)
11. Helped another family communicate with agencies and professionals? 42.7% (79) 37.3% (69) 12.4% (23) 7.6% (14) 1.85 (.91)
12. Visited the office or held meetings with legislators about disability services? 77.8% (144) 14.6% (27) 6.5% (12) 1.1% (2) 1.31 (.64)
13. Written letters to legislators about disability services? 63.2% (117) 24.9% (46) 8.6% (16) 3.2% (6) 1.52 (.79)
14. Tried to get media attention (e.g., newspaper, television, radio) about disability services? 78.4% (145) 14.6% (27) 5.9% (11) 1.1% (2) 1.30 (.63)
15. Taken on leadership roles in national, state, or local agencies related to disability services? 82.7% (153) 11.4% (21) 2.2% (4) 3.8% (7) 1.27 (.69)
16. Presented at state or national conferences about disability services? 90.8% (168) 5.9% (11) 1.6% (3) 1.6% (3) 1.14 (.50)
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Demographic and behavioral measures.

We collected information about the youth with ASD, including his/her age, gender, and whether he/she had exited high school. Parents reported on their youth’s social impairments using the Social Responsiveness Scale- Adult (Constantino & Gruber, 2012) and adaptive behavior using the adaptive behavior composite of the Vineland Scales of Adaptive Behavior-III (Sparrow et al., 2016). ID status was determined based on information and documentation (e.g., Individualized Education Plan, clinical records) provided by participants. We also collected information about the parent/family including race/ethnicity and family income. Parental depressive symptoms were measured using the depression subscale of the Depression, Anxiety, and Stress Scale (Lovibond & Lovibond, 1995); depressive symptoms were included to account for the role that parental distress might have in advocacy (Taylor & DaWalt, 2017).

Data Analysis

We used descriptive statistics (i.e., percentages) to examine parental involvement in each advocacy activity. To understand the unique contribution of parental advocacy activities to number of services, we conducted hierarchical regression analysis. The first block included demographic and functioning variables known to predict service receipt: youth co-occurring ID (ID/no ID), high school exit status (in high school, out of high school), gender (female, male), social impairments, and adaptive behaviors. This block also included state of residence, parent race/ethnicity (white, non-Hispanic vs. others), household income, and parental depressive symptoms. The second block included total parental advocacy activities. Change in the amount of variance in number of services accounted for at each step of the regression model was examined.

Community Involvement Statement

No community members were involved in this study.

Results

Parental advocacy activities

Descriptive information about parental advocacy activities is presented in Table 1. The most frequent activities were searching the internet to find agencies and/or services and talking with other parents about agencies and/or services – over one-half of the sample reported “Often” or “Very often” engaging in these activities. The least common parental advocacy activities were presenting about disability services at conferences or taking on leadership roles in agencies related to disability services.

Associations between advocacy activities and number of services

The results of the hierarchal regression analysis predicting number of services is presented in Table 2. The first block of variables accounted for 31.8% of the variance of the number of services. More services were received when youth were enrolled in high school (versus out of high school), had lower adaptive behavior scores, and lived in Illinois or Wisconsin (versus Tennessee). When adding parental advocacy activities in block two (i.e., after controlling for these factors), an additional 10.6% of the variance in services was accounted for, an R2 change that was significant, F (1, 173) = 31.76, p < .001. In total, the final model accounted for 42.3% of the variance in the number of services.

Table 2.

Results from Hierarchical Regression Model Predicting Number of Services

Variable Model 1
 Model 2
B (SE) Beta B (SE) Beta
Youth factors
 Co-occurring ID (1 = has ID) .53 (.47) .09 .41 (.43) .07
 HS exit status (1 = exited HS) −1.50 (.38) −.26** −1.48 (.35) −.26**
 Gender (1 = female) .55 (.43) .08 −.45 (.40) .07
 Social impairments −.01 (.02) −.03 −.02 (.02) −.04
 Adaptive behaviors −.03 (.01) −.23** −.03 (.01) −.21**
Parent/family factors
 State of residence: IL (vs. TN) 2.63 (.46) .44** 2.35 (.43) .39**
 State of residence: WI (vs. TN) 2.14 (.44) .36** 1.90 (.41) .32**
 Race/Ethnicity (1 = white, non-Latino) .35 (.46) .05 .34 (.42) .05
 Household income .13 (.08) .11 .15 (.08) .12
 Parental depressive symptoms .00 (.03) .00 −.01 (.03) −.02
 Parental advocacy activities --- --- .11 (.02) .33**
R-square change .32** .11**
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*

p < .05

**

p < .01

Note. TN = Tennessee; IL = Illinois; WI = Wisconsin. Given that state of residence was a three category, nominal variable, it was recoded into two dummy variables with Tennessee as the reference group.

Discussion

This study focused on one promising factor to improve service receipt among transition-aged youth with ASD – parental advocacy. Descriptive analyses suggested that some advocacy activities were more common than others among these families. Parents were most frequently engaged in advocating for services and supports for their own youth. They were less frequently engaged in advocacy activities related to supporting other families and were least engaged in system-level advocacy. Given the significant associations between parental advocacy activities and number of services in this analysis, future research should track parental advocacy over time to understand which parents are more likely to advocate for their sons and daughters, and ways to build advocacy skills in those who are less inclined or able. Future studies could also investigate whether specific advocacy activities seem to be particularly helpful in increasing service receipt.

In terms of predicting the number of services, consistent with previous studies (e.g., Dudley et al., 2019; Laxman et al., 2019), we found that youth with higher adaptive behavior scores and those who were out of high school received fewer services. Yet, parental advocacy was significantly associated with service receipt after controlling for these and other variables (including state of residence, which was strongly associated with number of services). Like research in school-aged children with developmental disabilities or mental health challenges (Burke et al., 2018; Kutash et al., 2011; Rios et al., 2021), these findings suggest that improving parental advocacy may empower parents to interact with service providers more effectively, leading to increased service receipt while youth with ASD are transitioning to adulthood.

Though identifying parental advocacy as a potential intervention target to improve service receipt is promising, it may point to yet another avenue for service disparities. Youth who are from underrepresented racial-ethnic groups and those whose families have less education or income are at greater risk for unmet service needs (Dudley et al., 2019; Laxman et al., 2019; Shattuck et al., 2011; Taylor & Henninger, 2015). Our findings suggest that youth whose parents are advocating less often or less effectively might also be at-risk for service disparities; however, a youth’s access to services should not hinge on their parent’s ability to advocate on their behalf. Thus, there is a need for professionals and advocates who can assist individuals and families in navigating service systems (for examples of service advocacy programs, see Burke et al, 2016 and Taylor et al., 2021).

The present study has several limitations worth noting. First, the study drew from a convenience sample that was primarily White, well-educated, and well-resourced. Combining all non-white or Latinx participants into one “other” category may have obscured service and advocacy differences within these groups (e.g., Trainor, 2010). Alternatively, there was substantial diversity in the sample in terms of the support needs of the youth (as evidenced by including those with and without ID as well as with a range of social impairments – see Supplemental Table 1). Thus, that contributor to service access was likely sufficiently addressed. Future research with more diverse samples is needed to understand whether supporting families to increase their advocacy activities might serve as a vehicle to reduce service disparities related to race/ethnicity or socio-economic resources. Relatedly, participants in this study were part of a RCT aimed at improving parent advocacy ability; though data were collected prior to any intervention delivery, it is possible that the associations between parent advocacy activities and number of services might differ from other families of youth with ASD.

The cross-sectional nature of this study is another limitation. This design makes it impossible to disentangle the direction of effects, and there may be variables not accounted for in our analyses that could be driving the relations between advocacy activities and service access. Future research using experimental or longitudinal designs is needed to determine whether improving parental advocacy is related to greater service access. In these studies, it will be important to also consider the role of self-advocacy and self-determination of the youth with ASD, including how parents can support their son/daughter to be more independent but also how self-advocacy directly impacts service access. Finally, this study only examined one component of service access – number of services. Future research should examine whether parent advocacy improves other aspects of service access such as unmet service needs and fit.

Despite the limitations, important conclusions can be drawn from this study. Our results suggest that parental advocacy may be a key factor that predicts service disparities among transition-aged youth with ASD. As one of the only malleable factors associated with service access identified to date, interventions aimed at promoting parental advocacy may be effective in increasing service receipt for youth with ASD who are transitioning into adulthood.

Supplementary Material

Supplementary Materials

Acknowledgments

This research was supported by the National Institute of Mental Health (R01 MH116058, PI: Taylor), with core support from the National Institute of Child Health and Human Development (P50 HD103537, PI: Neul; U54 HD090256, PI: Chang) and the National Center for Advancing Translational Sciences (UL1 TR000445). We are grateful to the families who volunteered their time to participate in the project. Chung eun Lee is now at Chonnam National University.

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Supplementary Materials

Supplementary Materials
NIHMS1750102-supplement-Supplementary_Materials.docx (23.7KB, docx)

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