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Examining the Effectiveness, Feasibility, and Acceptability of an Advocacy Program for Latinx Families of Transition-Aged Autistic Youth

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Title: Examining the Effectiveness, Feasibility, and Acceptability of an Advocacy Program for Latinx Families of Transition-Aged Autistic Youth
Language: English
Authors: Janeth Aleman-Tovar (ORCID 0000-0001-7367-7475), Meghan M. Burke (ORCID 0000-0001-5287-2351), Edwin Monárrez, Nicole Espinosa Zaldivar
Source: Autism: The International Journal of Research and Practice. 2025 29(4):1005-1018.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Peer Reviewed: Y
Page Count: 14
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Advocacy, Hispanic Americans, Family (Sociological Unit), Autism Spectrum Disorders, Youth, Program Effectiveness, Barriers, Individualized Transition Plans, Cultural Differences, Language Usage, Special Education, Social Services
DOI: 10.1177/13623613241292159
ISSN: 1362-3613
1461-7005
Abstract: Families of autistic youth often support their children's transition from adolescence to adulthood. During this time, families learn to navigate the complex shift from school-based to adult disability services. For Latinx (vs non-Latinx White) families of autistic youth, transition is especially difficult because of the systemic barriers (e.g. language) Latinx families face when accessing services. Unfortunately, few interventions aim to improve the transition among Latinx families of autistic transition-aged youth. This study examines the effectiveness, feasibility, and acceptability of the ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services) program, a six-session program for Latinx families of autistic youth, with respect to increasing: school-based transition planning and adult disability services knowledge, empowerment, and advocacy. Twenty-nine participants were included in this single-group, intervention study. After completing the program, participants demonstrated significantly improved: knowledge of school-based transition planning and adult disability services, advocacy, and empowerment. In addition, participants were highly satisfied with the program, based on the formative and summative evaluations and individual interviews. Implications for research and practice are discussed.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1466087
Database: ERIC
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  Value: <anid>AN0184233758;f9d01apr.25;2025Apr08.02:17;v2.2.500</anid> <title id="AN0184233758-1">Examining the effectiveness, feasibility, and acceptability of an advocacy program for Latinx families of transition-aged autistic youth </title> <p>Families of autistic youth often support their children's transition from adolescence to adulthood. During this time, families learn to navigate the complex shift from school-based to adult disability services. For Latinx (vs non-Latinx White) families of autistic youth, transition is especially difficult because of the systemic barriers (e.g. language) Latinx families face when accessing services. Unfortunately, few interventions aim to improve the transition among Latinx families of autistic transition-aged youth. This study examines the effectiveness, feasibility, and acceptability of the ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services) program, a six-session program for Latinx families of autistic youth, with respect to increasing: school-based transition planning and adult disability services knowledge, empowerment, and advocacy. Twenty-nine participants were included in this single-group, intervention study. After completing the program, participants demonstrated significantly improved: knowledge of school-based transition planning and adult disability services, advocacy, and empowerment. In addition, participants were highly satisfied with the program, based on the formative and summative evaluations and individual interviews. Implications for research and practice are discussed. To support Latinx families of autistic youth navigate school-based transition services and adult disability services, we provided a family advocacy program entitled, ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). The ASISTIR program consisted of six, two-hour sessions and included the following topics: school-based transition planning, person-centered planning, Supplemental Security Income, Vocational Rehabilitation, and Home and Community-Based Medicaid Waiver. Twenty-nine Latinx family members completed the cohort-based ASISTIR program. After participating family members demonstrated increased knowledge of school-based transition planning and adult disability services. Participants also demonstrated increased empowerment and advocacy.</p> <p>Keywords: adult disability services; autism; Latinx; parent advocacy; special education</p> <p>Transition-aged autistic youth in United States often report poor transition planning experiences and post-school outcomes. Regarding the former, families of autistic youth often report feeling relegated to listening roles during the transition process ([<reflink idref="bib34" id="ref1">34</reflink>]). With respect to outcomes, autistic youth (vs youth with other types of disabilities) are less likely to receive services after high school and often have difficulty finding and maintaining employment ([<reflink idref="bib32" id="ref2">32</reflink>]).</p> <p>Of particular concern are the poor experiences and post-secondary outcomes of Latinx autistic youth. Latinx families face additional barriers (e.g. language differences, U.S. citizenship concerns, and limited information about services; [<reflink idref="bib3" id="ref3">3</reflink>]) when navigating school-based transition planning and the adult service delivery system. These barriers may preclude youth and their families from accessing needed services leading to poor post-school outcomes. For example, Latinx (vs non-Latinx White) autistic youth are less likely to find and maintain employment and enroll in postsecondary education ([<reflink idref="bib32" id="ref4">32</reflink>]).</p> <p>There may be several ways to support Latinx families in accessing services for their autistic youth. For example, knowledge of school-based transition planning may allow families to access school-based services. When families have special education knowledge, they are better able to access services for their offspring ([<reflink idref="bib7" id="ref5">7</reflink>]). However, Latinx (vs non-Latinx White) families of children with disabilities (including autism) often report less special education knowledge ([<reflink idref="bib8" id="ref6">8</reflink>]). Advocacy programs have been developed to increase knowledge of the service delivery system (e.g. [<reflink idref="bib33" id="ref7">33</reflink>]). However, majority of participants are White ([<reflink idref="bib14" id="ref8">14</reflink>]). Given the disparities among Latinx (vs non-Latinx White autistic youth, it is important to test programs among Latinx families.</p> <p>Empowerment (i.e. the capacity to act on another's behalf; [<reflink idref="bib27" id="ref9">27</reflink>]) may also be an important skill for families of autistic youth in accessing services. Parental empowerment has been associated with increased access to adult disability services ([<reflink idref="bib33" id="ref10">33</reflink>]) and school services ([<reflink idref="bib29" id="ref11">29</reflink>]). In a pilot study to examine the feasibility and effectiveness of an advocacy program (FIRME) for school-based services for Latinx families of children (ages 3–22) with intellectual and developmental disabilities (including autism), participants demonstrated increased empowerment as measured by the Family Empowerment Scale (FES). Specifically, after completing the culturally tailored advocacy program, Latinx mothers felt more empowered to advocate for services ([<reflink idref="bib29" id="ref12">29</reflink>]). Yet, in a separate study to increase special education, advocacy, and empowerment, [<reflink idref="bib21" id="ref13">21</reflink>] developed and tested a low-intensity (i.e. three sessions), low-cost parent advocacy training (i.e. IEP advocacy Mentorship Program) for Latinx families <emph>and</emph> other minority families of children (ages 3–12) with ASD, and found participants did not demonstrate increased empowerment. Specifically, results from the pilot RCT showed that the intervention group (compared to the control group) participants demonstrated significantly increased parent knowledge but <emph>not</emph> parent empowerment ([<reflink idref="bib21" id="ref14">21</reflink>]). Notably, both studies used the Family Empowerment Scale ([<reflink idref="bib18" id="ref15">18</reflink>]). It is unclear if empowerment did not significantly increase because the IEP Advocacy Mentorship Program was not exclusively developed for Latinx families, in contrast to FIRME, which was developed for Latinx families. Extant literature has suggested that when an intervention and related measures are adapted, they are significantly more effective than non-adapted interventions ([<reflink idref="bib10" id="ref16">10</reflink>]). More research is needed to determine whether parental empowerment increases when the intervention is exclusively developed for Latinx families.</p> <p>Parent advocacy is also critical to accessing services. Indeed, advocacy may help families access needed services for their offspring ([<reflink idref="bib20" id="ref17">20</reflink>]). Parent advocacy programs (e.g. [<reflink idref="bib24" id="ref18">24</reflink>]; [<reflink idref="bib29" id="ref19">29</reflink>]) developed for Latinx families of children with disabilities have demonstrated increased parental comfort with advocacy skills. More research is needed to determine which program characteristics (e.g. length of program, activities, follow-up sessions etc.) improve parent advocacy skills. Notably, parent advocacy efforts may be especially difficult for Latinx families because of the systemic barriers (e.g. language differences, discrimination) they often face when interacting with service providers ([<reflink idref="bib3" id="ref20">3</reflink>]). To enable Latinx families to overcome systemic barriers, it is important for programs to continue to target advocacy skills for participants.</p> <p>In addition to examining whether a program is effective among Latinx families of autistic transition-aged youth, it is also important to characterize the feasibility and acceptability of programs. For programs to be successful, they must also be feasible for individuals to attend. There has been only one cultural adaption of a transition program targeting Latinx families: <emph>Juntos en la Transición</emph> (JET; [<reflink idref="bib19" id="ref21">19</reflink>]). JET was piloted with five Latinx families revealing that JET was feasible and acceptable. However, the effectiveness of JET was not evaluated. Thus, it is unclear the extent to which a program focusing on special education <emph>and</emph> adult services may be feasible and acceptable to Latinx families.</p> <p>To address knowledge, empowerment, and advocacy, programs have been developed for Latinx families (e.g. FIRME; [<reflink idref="bib29" id="ref22">29</reflink>]; IEP advocacy Mentorship Program; [<reflink idref="bib21" id="ref23">21</reflink>]) and non-Latinx White families (e.g. Volunteer Advocacy Program-Transition; [<reflink idref="bib33" id="ref24">33</reflink>]). However, few of these programs focus on school-based transition planning <emph>and</emph> adult disability services. Further, most programs are tested with majority White participants ([<reflink idref="bib1" id="ref25">1</reflink>]; [<reflink idref="bib14" id="ref26">14</reflink>]). Accordingly, it is unclear if the programs are effective for Latinx families of youth with disabilities. Given the service disparities and poor post-school outcomes of Latinx (vs non-Latinx White) autistic youth ([<reflink idref="bib25" id="ref27">25</reflink>]), it is important to address the unique needs of Latinx families.</p> <p>To ensure Latinx families of autistic youth access services, it is important to provide targeted support. Thus, the purpose of this study was to test the effectiveness, feasibility, and acceptability of an advocacy program for Latinx families of autistic youth. We addressed the following research questions: (<reflink idref="bib1" id="ref28">1</reflink>) Does the ASISTIR program effect outcomes (i.e. knowledge about school-based transition planning and adult disability services; advocacy skills; and empowerment)?; and (<reflink idref="bib2" id="ref29">2</reflink>) How do Latinx families of autistic youth perceive the feasibility and acceptability of the ASISTIR program? Quantitative data and qualitative data were collected.</p> <hd id="AN0184233758-2">Method</hd> <p></p> <hd id="AN0184233758-3">Participants and setting</hd> <p>To be eligible for this study, participants needed to: identify as Latinx; be a caregiver of an autistic youth between the ages of 12 and 22; be willing to participate in a six-session synchronous online program; and live in a specific Midwestern state. Participants were included if their child was at least 12 years old because families of children with disabilities, including autism, have suggested transition planning should begin when their child is in elementary school or at the age of 12 ([<reflink idref="bib3" id="ref30">3</reflink>]). Families of youth older than 22 years of age were excluded because in the state which this study took place, youth were no longer eligible for school-based services at age 22.</p> <p>Before recruiting participants, we conducted a power analysis to determine the needed sample size for this study. We utilized traditional assumptions (i.e. power = 80%, <emph>p</emph> = <.05) and estimated the power Group × Time interaction. The dependent variable was school-based knowledge because this variable has been used in prior studies about parent advocacy programs (e.g. [<reflink idref="bib29" id="ref31">29</reflink>]) and has resulted in a large effect size (1.47). For this power analysis, we used the effect size of.45 to be conservative and embedded a 10% attrition rate based on prior studies ([<reflink idref="bib7" id="ref32">7</reflink>]). We found we needed 29 participants for sufficient power.</p> <p>Altogether, 38 individuals expressed interest in the study. See Figure 1. Twenty-nine participants met the inclusionary criteria and completed the pre- and post-survey, attended the ASISITIR program, and completed the individual interview. See Table 1 for participant demographics.</p> <p>Graph: Figure 1. Participant recruitment, inclusion, and retention.</p> <p>Table 1. Participant and youth demographics.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /></colgroup><thead><tr><th /><th align="left">% (<italic>N</italic> = 29)</th></tr></thead><tbody><tr><td colspan="2"><italic>Parent Demographics</italic></td></tr><tr><td colspan="2">Gender</td></tr><tr><td> Female</td><td>96.5% (28)</td></tr><tr><td colspan="2">Ethnicity</td></tr><tr><td> Mexican</td><td>93.1% (27)</td></tr><tr><td> Puerto Rican</td><td>3.4% (1)</td></tr><tr><td> Central American</td><td>3.4% (1)</td></tr><tr><td colspan="2">Marital Status</td></tr><tr><td> Married</td><td>69.0% (20)</td></tr><tr><td> Separated</td><td>13.8% (4)</td></tr><tr><td> Never married</td><td>6.9% (2)</td></tr><tr><td> Divorced</td><td>6.9% (2)</td></tr><tr><td> Widowed</td><td>3.4% (1)</td></tr><tr><td colspan="2">Annual Household Income</td></tr><tr><td> Less than US$15,000</td><td>13.8% (4)</td></tr><tr><td> Between US$15,000–US$29,000</td><td>31.0% (9)</td></tr><tr><td> Between US$30,000–US$49,000</td><td>37.9% (11)</td></tr><tr><td> Between US$50,000–US$69,000</td><td>3.4% (1)</td></tr><tr><td> Between US$70,000–US$99,000</td><td>6.9% (2)</td></tr><tr><td> Over US$100,000</td><td>3.4% (1)</td></tr><tr><td> Missing</td><td>3.4% (1)</td></tr><tr><td colspan="2">Primary language</td></tr><tr><td> Only Spanish</td><td>86.2% (25)</td></tr><tr><td> Both equally</td><td>6.9% (2)</td></tr><tr><td> English is better than Spanish</td><td>6.9% (2)</td></tr><tr><td colspan="2">Educational Background</td></tr><tr><td> Some high school</td><td>34.5% (10)</td></tr><tr><td> High school degree</td><td>3.4% (1)</td></tr><tr><td> Some college</td><td>24.1% (7)</td></tr><tr><td> 4-year degree</td><td>20.7% (6)</td></tr><tr><td> Graduate/professional degree</td><td>13.8% (4)</td></tr><tr><td> Missing</td><td>3.4% (1)</td></tr><tr><td colspan="2"><italic>Youth Demographics</italic></td></tr><tr><td colspan="2">Gender</td></tr><tr><td> Male</td><td>89.7% (26)</td></tr><tr><td colspan="2">Disability in addition to autism<xref ref-type="table-fn" rid="tfn1">a</xref></td></tr><tr><td> Specific Learning Disability</td><td>37.9% (11)</td></tr><tr><td> Emotional Behavior Disorder</td><td>20.7% (6)</td></tr><tr><td> Orthopedic impairment</td><td>17.2% (5)</td></tr><tr><td> Intellectual Disability</td><td>17.2% (5)</td></tr></tbody></table> </ephtml> </p> <p>1 Participants could list more than one type of disability.</p> <hd id="AN0184233758-4">The ASISTIR program</hd> <p>The ASISTIR program was offered synchronously via Zoom, a secure videoconference online platform. To meet the needs of participants, the ASISTIR program was offered on four occasions (i.e. Tuesday mornings, Thursday evenings, Friday afternoons, and Saturday mornings). Specifically, the ASISTIR program was offered three days/times in Spanish and one day/time in English. Participants were able to select their preferred language and day of training.</p> <p>The ASISTIR program is a cultural adaption of the Project ASSIST (Taylor et al., 2021). To culturally adapt Project ASSIST, first the research team incorporated the Community Cultural Wealth (CCW) Framework ([<reflink idref="bib36" id="ref33">36</reflink>]), and the Ecological Validity Framework (EVF, [<reflink idref="bib6" id="ref34">6</reflink>]). See supplementary material for more information. After the first round of cultural adaptations, the researchers shared the curriculum with eight Mexican-American caregivers of autistic youth and interviewed them to examine their perceptions of the ASISTIR program. Based on their feedback, changes were made to the curriculum. For more information about the cultural adaptation process, see [<reflink idref="bib2" id="ref35">2</reflink>].</p> <p>The sequence of the ASISTIR program was grounded in the complex learning approach (i.e. integration of knowledge, skills, and attitudes; participants integrate what they learned in a training to their daily life; [<reflink idref="bib35" id="ref36">35</reflink>]). Specifically, the ASISTIR program includes information about: person-centered planning; school-based transition planning; Vocational Rehabilitation services; Supplemental Security Income (SSI); and the Home and Community-Based Services (HCBS) Medicaid waiver. In accordance with the ASSIST program, the ASISTIR program reflected three features: informative, emotional, and skill building supports. Regarding informative support (i.e. form of support that involves sharing information, experiences, and advice or resources to help cope and understand transition planning; [<reflink idref="bib17" id="ref37">17</reflink>]), the ASISTIR program provided participants with information about school-based transition planning (e.g. transition services) and adult disability services (e.g. SSI). To address emotional support (i.e. form of support that involves listening and empathizing with one another; [<reflink idref="bib26" id="ref38">26</reflink>]), the ASISTIR program was cohort-based. Accordingly, participants were able to share and listen to the experiences of their peers. A cohort model allows participants to provide emotional support to one another ([<reflink idref="bib23" id="ref39">23</reflink>]). Regarding skill-building support (i.e. form of support that provides multiple approaches to address complex problems; [<reflink idref="bib22" id="ref40">22</reflink>]), the ASISTIR program provided participants with opportunities to role-play advocacy strategies. Extant literature suggests that Latinx families of autistic youth are unfamiliar with available school and adult disability services for their transition-aged children ([<reflink idref="bib3" id="ref41">3</reflink>]; [<reflink idref="bib12" id="ref42">12</reflink>]). Thus, the ASISTIR program provided participants with information about services and advocacy tips for requesting services. A Latina family member (not a parent) of a person with a disability facilitated the ASISTIR sessions.</p> <hd id="AN0184233758-5">Recruitment</hd> <p>To successfully recruit Latinx participants, community involvement and trusting relationships are essential ([<reflink idref="bib23" id="ref43">23</reflink>]). To this end, we used <emph>personalismo</emph> (i.e. the process of developing <emph>confianza</emph> or trust between families and professionals) to build relationships with local parent support groups, Latinx organizations, and disability groups. The first author has developed relationships with multiple Latinx family support groups. For example, she has volunteered with Grupo Salto (a non-profit organization serving over 500 Spanish-speaking Latinx families of autistic youth in the Chicagoland area) for over four years. By volunteering the author was able to develop <emph>confianza</emph> with the Grupo Salto families. We distributed recruitment flyers in English and Spanish. Each participant was given a $70 stipend. Specifically, participants received a $10 stipend at the end of each session (a total of six sessions) and an additional $10 stipend after completing the member check for the interview.</p> <hd id="AN0184233758-6">Procedures</hd> <p>First, we received Institutional Review Board approval. Then, potential participants were screened to identify whether the participant met the inclusionary criteria. Each participant was asked to complete a consent form and pre-survey via REDCap or telephone. Then, participants attended the ASISTIR program. After each ASISTIR session, participants completed a formative evaluation. At the end of the program, participants completed a post-survey, summative evaluation, and an individual interview. Interviews were scheduled based on the participants' preferred: language, availability, and mode. Most interviews were conducted over the phone (<emph>n</emph> = 28) and in Spanish (<emph>n</emph> = 27). The third and fourth authors conducted and recorded each interview. During the interview, we completed field notes (e.g. changes in tone of voice, setting). We transcribed each interview verbatim and assessed the fidelity of the interviews. For most (<emph>n</emph> = 27, 93.1%) participants, all interview protocol questions were asked. On average, interviews were 33.39 minutes (range 16.07 to 62.57 min, <emph>SD</emph> = 11.71). The interview transcripts were comprised of 227 single-spaced pages.</p> <p>A booster session was offered six weeks after the completion of the ASISTIR program. During this session, the facilitator: provided additional resources related to the topics in the ASISTIR program and answered participant questions. Altogether, 44.82% (<emph>n</emph> = 13) of participants attended the booster session. After the booster session, all participants were asked to complete the follow-up survey. A total of 12 (41.38%) participants completed the follow-up survey. Upon comparison of the participants who did (vs did not) complete the follow-up survey, there were no significant differences in participant demographics and baseline levels of empowerment, advocacy, and school-based transition planning knowledge. Notably, participants who completed (vs did not complete) the follow-up survey had greater baseline knowledge of adult disability services (<emph>p</emph> <.05).</p> <hd id="AN0184233758-7">Measures</hd> <p>Data were collected using pre, post, and follow-up surveys, semi-structured interviews, and formative, and summative evaluations. To measure change over time, the pre, post, and follow-up surveys were identical. The survey took approximately 20–25 min to complete.</p> <hd id="AN0184233758-8">School-Based Transition Planning Knowledge Scale</hd> <p>Adapted from a special education knowledge measure ([<reflink idref="bib7" id="ref44">7</reflink>]) to focus on school-based transition planning, this measure included 10 multiple-choice questions. An example question was: "At what age does a transition plan need to be in place?" Responses were coded as either "incorrect" (0) or "correct" (<reflink idref="bib1" id="ref45">1</reflink>), with summed scores from zero to ten. Higher scores suggested greater knowledge. This scale has been used with Latinx families of autistic children ([<reflink idref="bib29" id="ref46">29</reflink>]).</p> <hd id="AN0184233758-9">Adult Disability Services System Knowledge Scale</hd> <p>To measure content covered in ASISTIR, we adapted the Adult Disability Services System Knowledge Scale ([<reflink idref="bib33" id="ref47">33</reflink>]). Comprised of 15 multiple choice questions, an example question was: "How is a youth eligible for vocational rehabilitation services?" Each response was coded as either "correct" (<reflink idref="bib1" id="ref48">1</reflink>) or "incorrect" (0), with scores ranging from 0 to 15. Higher scores inferred greater knowledge.</p> <hd id="AN0184233758-10">Family Empowerment Scale</hd> <p>The 34-item Family Empowerment Scale (FES; [<reflink idref="bib18" id="ref49">18</reflink>]) measured empowerment with respect to family, service system, and community environments. A 5-point Likert-type Scale (1 = not at all true to 5 = very true) was used to rate the items, with higher scores demonstrating greater empowerment. The FES has been used with Latinx families of autistic children ([<reflink idref="bib21" id="ref50">21</reflink>]). For the family subscale, the Cronbach's alpha was.85 at the pre-survey and.92 at the post-survey. For the service subscale, the Cronbach's alphas were.90 and.88 at the pre- and post-survey. For the community subscale, the Cronbach's alphas were.87 and.83 at pre-and post-survey, respectively.</p> <hd id="AN0184233758-11">Advocacy Scale</hd> <p>The ten item Advocacy Scale ([<reflink idref="bib7" id="ref51">7</reflink>]) measured participants' degree of comfort and skills in advocating for their autistic youth. Participants responded on a 5-point Likert-type scale (1 = not at all to 5 = excellent). An example item was: "How able are you to apply your rights and knowledge of the laws in navigating the adult service system?." Higher scores reflected greater advocacy. The measure has been used with Latinx families of autistic children ([<reflink idref="bib29" id="ref52">29</reflink>]). For this study, the Cronbach's alphas were.90 and.89 at the pre- and post-survey, respectively.</p> <hd id="AN0184233758-12">Formative and summative evaluation measures</hd> <p>To measure acceptability, participants anonymously completed formative and summative evaluation measures, which have been utilized in prior advocacy programs with Latinx families ([<reflink idref="bib29" id="ref53">29</reflink>]). Regarding the former, at the end of each session, participants completed a five-item, close-ended evaluation. The measure included questions related to overall perceptions of ASISTIR, the speaker, content, and logistics.</p> <hd id="AN0184233758-13">Attendance and attrition</hd> <p>To measure the feasibility of the ASISTIR program, attendance and attrition were recorded. Specifically, the total percentage of sessions attended was calculated for each participant. This was completed by dividing the sessions attended by the total number of sessions. To calculate attrition, the number of individuals who completed the ASISTIR program were compared to the number of individuals who attended the first session.</p> <hd id="AN0184233758-14">Individual interviews</hd> <p>After completing the ASISTIR program, individual interviews were conducted with participants to collect data regarding participants' perceptions of the ASISTIR program and to identify recommendations for the next iteration of ASISTIR. A semi-structured interview protocol was developed by the research team and family members of individuals with autism. Example questions included: "Please share your overall views on the ASISTIR program."; and "What information should we add or remove?." Most interviews were conducted over the phone (<emph>n</emph> = 28) and in Spanish (<emph>n</emph> = 27).</p> <hd id="AN0184233758-15">Treatment fidelity</hd> <p>Intervention checklists and reliability checks were developed by the research team to assess treatment fidelity. Regarding intervention checklists, the research team developed a standardized manual which the facilitator followed when implementing the intervention. The reliability checks consisted of a checklist of goals for each session. A bicultural and bilingual research team member, naïve to the study's goals, was trained and listened to the recording of each session and assessed whether the goals for the session were met. Each session met 100% of the goals. Regarding inter-rater agreement, a bilingual and bicultural student listened to 66.67% (<emph>n</emph> = 4) of the sessions for each ASISTIR cohort and completed the fidelity checklists. To measure reliability for fidelity of implementation, we compared the checklists between the observers. Point-by-point agreement was calculated between the observers. There was 100% agreement about the reliability of treatment fidelity.</p> <hd id="AN0184233758-16">Data analysis</hd> <p></p> <hd id="AN0184233758-17">Quantitative data analysis</hd> <p>Paired t-tests and a one-way ANOVA with repeated measures were conducted to determine the effects of the ASISTIR program on knowledge, advocacy, and empowerment. Effect sizes (ESs) were calculated via Cohen's <emph>d</emph>. Regarding the formative and summative evaluation data, descriptive statistics (e.g. means, standard deviations) were conducted to examine the feasibility and acceptability of the ASISTIR program.</p> <hd id="AN0184233758-18">Qualitative data analysis</hd> <p>Interviews were coded by three native Spanish-speakers; we coded the interviews in Spanish, using constant comparative analysis ([<reflink idref="bib13" id="ref54">13</reflink>]). We coded inductively (i.e. approach where the research team derives codes and themes from the data itself; [<reflink idref="bib13" id="ref55">13</reflink>]) to identify themes that emerged from the data. Specifically, each line of data was examined and compared with other data. If a line of data represented a distinct concept or idea it was given a code; if a separate line of data represented an established code, it was given the same code. A line was able to have multiple codes if it represented different concepts. We met to compare codes, resolve differences, and develop a codebook. We returned to the data to recode the transcripts using the codebook. We categorized the codes and grouped the categories into themes. In total, there were 80 codes (e.g. "shorten ice breakers," "online mode was convenient"). We grouped the codes into categories and organized the categories into themes. For example, with respect to general impressions of the ASISTIR program, codes (e.g. "enjoyed ASISTIR," "better prepared for transition planning meetings") were categorized (i.e. "positive perception of ASISTIR program") and then grouped into the theme: "High Satisfaction with the ASISTIR Program."</p> <hd id="AN0184233758-19">Trustworthiness</hd> <p>After each individual interview, a summary (i.e. member check) was sent to each participant. In total, 86.21% (<emph>n</emph> = 25) of participants responded to the member check. Of the 25 participants, most (92%, <emph>n</emph> = 23) agreed with the summaries. Pseudonyms on the transcripts and field notes were used to ensure the confidentiality of all participants. The research team also identified and discussed their own potential biases throughout the study. Peer debriefing was conducted throughout the study. For example, the research team shared the interview protocol and interview results with a qualitative expert in the field.</p> <hd id="AN0184233758-20">Researcher identity</hd> <p>Our research team has a strong connection to disability. Two research team members identify as family members of individuals with disabilities. Three of the research team members are Latinx, native Spanish speakers. Thus, the team had a strong understanding of Latinx culture and the disability community. Notably, three of the team members were also special education teachers. Their perspectives may differ from the perspectives of parents of individuals with disabilities. To address potential researcher bias, we met regularly to discuss any issues.</p> <hd id="AN0184233758-21">Community involvement statement</hd> <p>Family members of autistic youth were involved in the cultural adaptation of the ASISTIR curriculum and interview protocol.</p> <hd id="AN0184233758-22">Results</hd> <p></p> <hd id="AN0184233758-23">Effectiveness of ASISTIR</hd> <p>Participants demonstrated significant increases for school-based transition planning and adult disability services knowledge, empowerment, and advocacy (<emph>p</emph>'s <.05). ESs ranged from medium (.52) to large (1.6). See Table 2. A repeated measures ANOVA was conducted to identify differences among pre, post, and follow-up surveys in relation to special education and adult disability services knowledge, empowerment, and advocacy. All analyses were significant (<emph>p</emph>'s <.05). Accordingly, a post hoc analyses with Wilcoxon signed-rank tests with a Bonferroni correction was conducted. Results demonstrated that the pre-survey was significantly lower than the post-survey for empowerment (including the family and service subscales), school-based transition planning, and adult disability services knowledge (<emph>p</emph>'s <.05). See Table 3.</p> <p>Table 2. Pre and post survey responses.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th /><th align="left">Pre: Mean (<italic>SD</italic>)</th><th align="left">Post: Mean (<italic>SD</italic>)</th><th align="left"><italic>t</italic></th><th align="left"><italic>p</italic></th><th align="left"><italic>d</italic></th></tr></thead><tbody><tr><td>School-based transition planning knowledge</td><td>5.79 (1.66)</td><td>7.62 (1.63)</td><td>-4.37</td><td><.001</td><td>.81</td></tr><tr><td>Adult disability services knowledge</td><td>6.21 (2.13)</td><td>8.69 (1.97)</td><td>-5.20</td><td><.001</td><td>.97</td></tr><tr><td>Advocacy</td><td>29.76 (6.26)</td><td>37.90 (4.57)</td><td>-5.19</td><td><.001</td><td>.95</td></tr><tr><td>Empowerment</td><td>111.83 (19.97)</td><td>136.66 (15.94)</td><td>-5.49</td><td><.001</td><td>1.5</td></tr><tr><td> Family Subscale</td><td>39.03 (6.90)</td><td>49.66 (6.30)</td><td>-6.13</td><td><.001</td><td>1.6</td></tr><tr><td> Service Subscale</td><td>39.62 (7.66)</td><td>49.69 (5.61)</td><td>-6.25</td><td><.001</td><td>1.16</td></tr><tr><td> Community Subscale</td><td>33.17 (6.25)</td><td>37.31 (5.42)</td><td>-2.77</td><td>.010</td><td>.52</td></tr></tbody></table> </ephtml> </p> <p>Table 3. Pre/post/follow-up survey responses.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th /><th align="left">Pre: Mean (<italic>SD</italic>)</th><th align="left">Post: Mean (<italic>SD</italic>)</th><th align="left">Follow-up: Mean (<italic>SD</italic>)(<italic>n</italic> = 12)</th><th align="left"><italic>F</italic><xref ref-type="table-fn" rid="tfn2">a</xref></th><th align="left"><italic>p</italic></th><th align="left">η2</th><th align="left">Follow-up analyses</th><th align="left"><italic>p</italic> for follow-ups</th><th align="left"><italic>ES</italic> for follow-ups</th></tr></thead><tbody><tr><td>School-based transition planning knowledge</td><td>6.17 (1.34)</td><td>8.08 (1.78)</td><td>8.08 (1.38)</td><td>6.76</td><td>.014</td><td>.58</td><td>Pre < PostPre < Follow-upPost = Follow-up</td><td>.031.0101.00</td><td>1.211.400</td></tr><tr><td>Adult disability services knowledge</td><td>7.17 (1.90)</td><td>9.42 (1.98)</td><td>10.00 (1.71)</td><td>7.03</td><td>.013</td><td>.58</td><td>Pre < PostPre < Follow-upPost < Follow-up</td><td>.031.007.512</td><td>1.161.57.31</td></tr><tr><td>Advocacy</td><td>30.33 (8.41)</td><td>37.92 (4.19)</td><td>40.58 (3.15)</td><td>6.78</td><td>.014</td><td>.58</td><td>Pre < PostPre < Follow-upPost < Follow-up</td><td>.060.010.321</td><td>1.141.61.72</td></tr><tr><td>Empowerment</td><td>110.83 (22.42)</td><td>135.42 (17.23)</td><td>142.75 (10.63)</td><td>10.65</td><td>.003</td><td>.68</td><td>Pre < PostPre < Follow-upPost < Follow-up</td><td>.046.003.33</td><td>1.201.82.51</td></tr><tr><td> Familysubscale</td><td>38.75 (7.92)</td><td>49.25 (6.30)</td><td>50.42 (4.42)</td><td>9.58</td><td>.005</td><td>.66</td><td>Pre < PostPre < Follow-upPost < Follow-up</td><td>.021.0031.00</td><td>1.471.82.22</td></tr><tr><td> Service subscale</td><td>38.17 (8.47)</td><td>49.08 (6.65)</td><td>51.58 (4.03)</td><td>8.35</td><td>.007</td><td>.63</td><td>Pre < PostPre < Follow-upPost < Follow-up</td><td>.019.004.44</td><td>1.432.02.46</td></tr><tr><td> Community subscale</td><td>33.17 (6.93)</td><td>37.08 (5.28)</td><td>40.75 (3.79)</td><td>12.63</td><td>.002</td><td>.72</td><td>Pre < PostPre < Follow-upPost < Follow-up</td><td>.54.010.069</td><td>.631.36.80</td></tr></tbody></table> </ephtml> </p> <p>2 <emph>F</emph> is Wilk's Lambda for the entire model.</p> <hd id="AN0184233758-24">Feasibility of ASISTIR</hd> <p></p> <hd id="AN0184233758-25">High attendance and low attrition</hd> <p>In total, 75.86% (<emph>n</emph> = 22) of the participants attended all six sessions. The attrition rate was 9.67% (<emph>n</emph> = 1). Attrition was calculated as the number of individuals (<emph>n</emph> = 29) who completed the program divided by the number of individuals (<emph>n</emph> = 30) who attended the first session of the program.</p> <hd id="AN0184233758-26">Acceptability of ASISTIR sessions</hd> <p></p> <hd id="AN0184233758-27">Formative evaluations</hd> <p>At the end of each session, participants completed an online anonymous formative evaluation to assess their satisfaction with each individual session. Based on participant attendance, 161 formative evaluations should have been completed across the six sessions. In total, there were 56.52% (<emph>n</emph> = 91) of the total potential responses for the formative evaluations across the six sessions. Overall, participants were satisfied with each individual session. See Figure 2 for participation satisfaction for each session.</p> <p>Graph: Figure 2. Participants' satisfaction with ASISTIR content.</p> <hd id="AN0184233758-28">Summative evaluations</hd> <p>Of the 29 participants, 62.07% (<emph>n</emph> = 18) completed a 30-item anonymous summative evaluation via an online survey. Notably, most (94.44%, <emph>n</emph> = 17) participants completed the evaluation in Spanish. See Figure 3 for participants' overall satisfaction with logistics (i.e. time, day, and online platform).</p> <p>Graph: Figure 3. Summative evaluation: participants' overall satisfaction with logistics (n = 18).</p> <hd id="AN0184233758-29">Individual interviews</hd> <p>After completion of the ASISTIR program, in the individual interviews, participants (<emph>n</emph> = 29) reported they: (a) were highly satisfied with the ASISTIR program (i.e. content, translation, cultural concepts, activities, ice breakers, and advocacy and natural support tips); (b) gained school-based transition planning and adult disability services knowledge; (c) had improved empowerment and advocacy; and (d) enjoyed the peer support.</p> <hd id="AN0184233758-30">High satisfaction with the ASISTIR program</hd> <p>Overall, participants reported they were highly satisfied with the ASISTIR program and its focus on Latinx families of transition-aged youth with ASD. Soledad, the mother of 15-year-old autistic son, reported high satisfaction. At the beginning of the ASISTIR program, her son was placed in a residential program due to challenging behavior. Soledad reported that ASISTIR helped her become educated and empowered to advocate:</p> <p>Me dio gusto ver que existen programas que animan a uno como padre Latino. Porque a veces uno lo que le dicen los doctores está bien y uno [como padre] no es luchista ni busca nada [de servicios] para sus hijos. <emph>I was glad to see that there are programs that encourage one as a Latino parent. Because sometimes [we think] that what the doctors tell you is fine and one [as a parent] is not a fighter and we don't seek any type [of services] for our children.</emph></p> <p>Lourdes, a mother of a 15-year-old autistic son, reported that she was happy that the program considered the Hispanic culture. She reported,</p> <p>Sí me gustó que tomaran [el programa ASISTIR] en cuenta la forma de pensar de los hispanos. Como, de que es comun que los adolescents se queden en la casa de sus padres y no se tienen que mudarse cuando son adultos. <emph>I did like that they [ASISTIR program] took into account the way of thinking of Hispanics. Like, it is common for adolescents to stay in their parents' house and not have to move out when they are adults.</emph></p> <hd id="AN0184233758-31">Gained school-based transition planning and adult disability services knowledge</hd> <p>Many participants reported learning information about school-based transition planning and adult disability services from the ASISTIR program. For example, participants reported learning about transition goals, models of decision-making, person-centered planning, and SSI. Nereida, the aunt of an autistic 15 year-old who received most of his instruction in a general education classroom, reported:</p> <p>Aprendí qué es una meta inteligente y cómo tiene que incluir cómo el estudiante va a alcanzar la meta, quién lo va a ayudar y qué apoyos necesitará. <emph>I learned what is a SMART goal and how it has to include how the student is going to reach the goal, and who is going to help him and what supports he will need</emph>.</p> <p>With respect to adult services, participants reported they learned about the different models of decision-making. Amparo, the mother of an autistic 13 year-old, reported:</p> <p>En el program aprendi que puedo tener custodia total o parcial. Para mi hijo puede ser parcial, para que él pueda hacer sus cosas, pero aún yo pueda tener control de él en ciertos cosas como médicas o asi. <emph>In the program, I learned that you can have full or partial custody. For my son it can be partial [custody], so that he can do his things, but I can still have control of him in certain things like medical or something like that.</emph></p> <p>Participants also reported learning about the importance of including the youth in the transition process (i.e. person-centered planning). Clemencia reported she was beginning to learn about transition planning as her son entered eighth grade:</p> <p>He aprendido a irle preguntado a él [hijo], a irle diciendo lo que va a pasar en la transicion. Irle preguntando: "¿Qué es lo que quieres hacer?,," hacerlo pensar a él también qué es lo que quiere hacer en su vida adulto, eso es en lo que me ayudó [el programa] mucho. <emph>I have learned to ask him [son], to tell him what is going to happen in the transition. Asking him: "What do you want to do?</emph>,," <emph>making him think about what he wants to do in his adult life, that's what [the program] helped me with a lot.</emph></p> <p>Participants also reported learning about applying for SSI. For example, Carmela reported throughout the training that she did not know the eligibility requirements for SSI. During her interview, she stated:</p> <p>Aprendí cómo solicitar SSI, un servicio que necesita tener pero no tiene. Y eso es en lo que voy a trabajar, ese es mi objetivo en este momento. <emph>I learned how to apply for SSI, a service that he needs to have but does not have. And that's what I'm going to work on, that's my goal right now.</emph></p> <p>Likewise, Reina, the mother of a 19-year-old adolescent, reported:</p> <p>Yo nunca he pedido el seguro social para mi hijo, y entonces, ahora yo aprendi y pienso que ese es otro pasó que tengo que dar, porque ya mi hijo ya tiene 19 años. <emph>I have never requested social security for my son, and so, now I learned and I think that this is another step that I have to give, because my son is already 19</emph><emph>years old.</emph></p> <hd id="AN0184233758-32">Improved empowerment and advocacy</hd> <p>Participants reported feeling more empowered and likely to advocate after participating in ASISTIR. When asked how ASISTIR impacted her transition planning, Rita, the mother of an 18-year-old son, stated:</p> <p>Al yo tomar el entrenamiento, es como que gané más fuerzas de seguir trabajando con mi hijo y crearnos metas que antes no las tenía. <emph>By taking the training, it's like I gained more strength to continue to work with my son and create goals for him that I didn't have before.</emph></p> <p>Likewise, Mercedes, the mother of three children with ASD, reported, "Y ahora que estuvo en este entrenamiento, me siento más poderosa porque estoy informada. <emph>And now that I was in this training, I feel more powerful because I am informed.</emph>" Milagro, the mother of a 17-year-old, stated that after attending ASISTIR, she felt more empowered to advocate. Milagro shared:</p> <p>He aprendido a luchar por los derechos de mi hijo, exigir lo que necesita y ya no conformarme con los servicios que le dan. <emph>I have learned to fight for my son's rights, demand what he needs and no longer settle for the services he is given</emph>.</p> <hd id="AN0184233758-33">Enjoyed peer support</hd> <p>Participants reported they enjoyed having the opportunity to share their stories and listen to other families of autistic transition-aged youth. Mercedes reported having a space to share her experience and help other parents:</p> <p>A mi si me gusto compartir lo que he pasado con mis hijos, con los mamas. Es que, te digo que todos tenemos nuestros problemas o experiencias. Entre las mamas nos ayudamos: "¿Sabe qué? Haga esto, yo le recomiendo que haga lo otro, me ayudó tal persona, le doy el número de tal lado." Incluso, hasta a lo último nos dimos números de teléfono. Aver a quien le puedo ayudar. <emph>I did like to share what I've been through with my children, with the moms. It is that, I tell you that we all have our problems or experiences. Among the moms we helped each other: 'You know what? Do this, I recommend you do the other, such a person helped me, I'll give you the number to that place.' In fact, at the end we gave each other our phone numbers. I was willing to help others.</emph></p> <p>Similarly, Alegria, the mother of a 15-year-old, who had participated in a few advocacy trainings, reported "Sí, me gustó mucho la información que me dieron los otros papas. <emph>Yes, I really liked the information that the other parents gave me</emph>." To continue their peer support, most families exchanged phone numbers at the end of ASISTIR. Mariana described how she keeps in touch with some of the ASISTIR participants, "Nos dimos los numeros de telefonos y con unas si he hablado. <emph>We gave each other phone numbers and with some of them I have spoken to."</emph> Likewise, Beatriz explained,</p> <p>Ya me hice amiga de una señora y me está ayudando con la esculea, y pues eso se refiere a que podemos tener buenas relaciones entre las participantes. <emph>I've already made friends with a lady and she's helping me with school, and that means we can have good relationships between the participants</emph>.</p> <hd id="AN0184233758-34">Recommendations for the next iteration of ASISTIR</hd> <p>Participants were asked about suggested changes to the ASISITR program regarding: content, ice breakers, activities, cultural content, natural support and advocacy tips. Most participants reported they would not make any changes to the ASISTIR program. However, a few participants provided recommendations regarding: content, ice breakers and activities, and procedures.</p> <hd id="AN0184233758-35">ASISTIR content</hd> <p>Participants reported the ASISTIR program should increase the number of sessions (e.g. 10 sessions), and include other topics (e.g. post-secondary education; community resources). Many participants reported they wanted more "mas sesiones <emph>more sessions</emph>" but did not specify a number. For example, Soledad reported, "Me gustaria que hubiera mas sesiones y que continuariamos con el programa. <emph>I would like there to be more sessions and that we would continue with the program.</emph>" Two participants specifically reported that there should be 10 sessions. Alejandra reported:</p> <p>Me gustaria que sería un poquito más largo. Pero yo creo que hasta diez sesiones es bien. Ya más, sería yo creo que mucho, pero diez sesiones yo creo que sería bien. <emph>I wish it would be a little longer. But I think that up to ten sessions is fine. More than ten, I think it would be a lot, but ten sessions I think it would be good.</emph></p> <p>Some participants suggested other topics for the training. Specifically, participants reported the following topics should be included in ASISTIR: post-secondary education options for students with disabilities (<emph>n</emph> = 2), and community resources (<emph>n</emph> = 2).</p> <hd id="AN0184233758-36">ASISTIR ice breakers and activities</hd> <p>Some (<emph>n</emph> = 7) participants recommended changes to the ice breakers and activities. Regarding the ice breakers, participants suggested conducting small groups for ice breakers (vs whole group). Susana attended ASISTIR in a cohort of 16 participants; she reported:</p> <p>Pues me gustaría como bueno, ponernos como en grupos para que así haya como grupo uno, grupo dos durante los rompehielos. <emph>Well, I would like, well, to put us in groups so that there is group one and group two during ice breakers.</emph></p> <p>Notably, this sentiment (i.e. decreasing the time participants spoke) was shared by many of the participants in the cohort of 16 participants. Angelica reported:</p> <p>Los rompehielos, pues es una muy buenaforma de empezar las sesiones. A veces las mamás se tardaban mucho, muchas veces tienen ganas de hablar, y se extendían en las explicaciones. Pero, creo que [presenter] fue muy sabia al meterse y cortar la plática, para desviarla, o parar ... cinco minutos, para discutir. <emph>Ice breakers are a very good way to start the sessions. But, sometimes the mothers took a long time, many times they wanted to talk, and they extended their explanations. But I think [presenter] was very wise to step in and cut off the conversation, to divert it, or stop ... we should have five minutes to discuss.</emph></p> <p>In regard to activities, participants suggested embedding more case studies and adding assessments to measure participants' understanding of the content. Gerardo suggested:</p> <p>Sería bueno tener unos dos o tres ejercicios hipotéticos. Por decirlo así: "Es Petra que tiene un niño así, así, así, y este niño tiene esta situación. ¿Qué se podría hacer en este caso?.." Entonces, allí ya empleas<emph>—</emph>una lluvia de ideas como grupo. <emph>It would be nice to have two or three hypothetical exercises. To put it this way: "It is Petra who has a child like this, like this, like this, and this child has this situation. What could be done in this case?" So, there you already—brainstorming as a group.</emph></p> <p>Sofia, suggested adding assessments to measure participants' understanding of the topic:</p> <p>Que la persona que está dando el entrenamiento se asegure de que estamos entendiendo. Por ejemplo, no solamente proveer la información, sino que, sistemáticamente, dentro del entrenamiento haya como unos minutos para que la persona—"Tienen diez minutos ahora para contestarme estas tres preguntas,," por ejemplo. Como para confirmar que estamos entendiendo bien las cosas. <emph>That the person who is giving the training should make sure that we are understanding. For example, not only provide the information, but, systematically, within the training there are about a few minutes for the person—"You have ten minutes now to answer these three questions</emph>,," <emph>for example. As if to confirm that we are understanding things correctly.</emph></p> <p>Notably, both Gerardo and Sofia self-disclosed they have attended multiple parent trainings and thus were able to suggest activities they found valuable from previous trainings.</p> <hd id="AN0184233758-37">ASISTIR procedures</hd> <p>After participating in ASISTIR, participants made recommendations regarding the future mode (i.e. online or in-person) of the program and suggested a combination of facilitators. With respect to the mode, the majority of the participants reported the online training was convenient and accessible. However, some (<emph>n</emph> = 10) participants suggested that ASISTIR should be conducted in-person. Gerardo stated,</p> <p>Lo mejor para mí es en persona. Porque, desafortunadamente, nosotros como hispanos ya tenemos esa idiosincrasia de que todo lo tratamos en persona. <emph>The best thing for me is in person. Because, unfortunately, we as Hispanics already have that idiosyncrasy that we deal with everything in person.</emph></p> <p>Victoria, the mother of a 13-year-old son and an avid parent support group member, expressed her preference for in-person:</p> <p>Es muy diferente en persona; porque tomar entrenamientos en persona, son más interesante, pues nos conocemos en persona, tenemos la persona enfrente. Es simplemente distinto, ¿cómo le digo? Es como uno siente las energías positivas o la vibra, que eso no se puede sentir en un teléfono o en una computadora. <emph>It is very different in person; because taking training sessions in person is more interesting, because we meet in person, we have the person in front of us. It's just different, how can I tell you? It's because you feel positive energies or vibes, that you can't feel on a phone or on a computer.</emph></p> <p>Regarding whom should facilitate the next iteration of ASISTIR, participants overwhelmingly reported a bilingual, bicultural facilitator. Jimena stated,</p> <p>A mí me gustó mucho el profesionalismo y las características de [facilitator], como es Latina. Entonces, para mí, ella se me hace una persona muy profesional, muy comprensiva, y a mí me gustaría que ella lo siguiera haciendo. <emph>I really liked [facilitator's] professionalism and characteristics, since she is Latina. So, for me, she makes me a very professional person, very understanding, and I would like her to continue doing so.</emph></p> <p>However, many (<emph>n</emph> = 15) participants suggested the training should also include a combination of facilitators, such as parents, professionals, and young adults with ASD. Adelia reported,</p> <p>Probablemente sería bueno ver diferentes puntos de vista. Porque, como te mencionaba, no es igual desde el punto de vista de un abogado, de un papá, de un maestro o de un psicólogo o de un psiquiatra. <emph>It would probably be nice to see different points of view. Because, as I mentioned, it is not the same from the point of view of a lawyer, a father, a teacher or a psychologist or a psychiatrist</emph>.</p> <p>Similarly, Monseratt, stated,</p> <p>Piensa que una persona profesional, que es bilingüe, o, por ejemplo, una madre o un padre que tiene un un niño o niña que tiene discapacidad. O un adulto con una discapacidad. <emph>I think of a professional person, who is bilingual. Or a mother or father who has a child with a disability. Or an adult with a disability</emph>.</p> <hd id="AN0184233758-38">Discussion</hd> <p>To date, none of the extant advocacy programs focus on school-based transition planning services <emph>and</emph> adult disability services for Latinx families of transition-aged autistic youth. In a recent literature review, [<reflink idref="bib1" id="ref56">1</reflink>], examined existing program for families of transition-aged youth with disabilities and found 12 programs developed to support families. Of the 12, only four advocacy programs included content about both school-based transition services and adult disability services. Yet, none of these programs were developed or targeted for Latinx families. Notably, two programs about school-based transition planning were culturally responsive to meet the needs of Latinx families. However, neither of these programs included information about adult disability services. The lack of programs is problematic given the service and outcome disparities among Latinx (vs non-Latinx White) families of autistic youth ([<reflink idref="bib25" id="ref57">25</reflink>]). This study suggests that an advocacy program can be effective, feasible, and acceptable among Latinx families of autistic youth. There were four main findings. First, ASISTIR demonstrated preliminary effectiveness in improving knowledge among Latinx families of autistic youth. This finding aligns with prior research, which demonstrates that parent education program participation improves participants' knowledge of school-based transition planning and adult disability services ([<reflink idref="bib33" id="ref58">33</reflink>]). However, most studies predominately include White parents of transition-aged youth with disabilities (for a review, see [<reflink idref="bib1" id="ref59">1</reflink>]). This study extends the literature by suggesting that a culturally adapted transition planning program for Latinx families can improve participants' knowledge of school-based transition planning and adult disability services.</p> <p>However, there is room for improvement regarding participant knowledge. Although participants' knowledge increased after participating in ASISTIR (pre- to post-survey), there were no significant changes in knowledge in the follow-up survey. The school-based transition planning scale (ranges from 0 to 10) demonstrated no improvement from pre-survey (<emph>M</emph> = 8.08, <emph>SD</emph> = 1.78) to follow-up survey (<emph>M</emph> = 8.08, <emph>SD</emph> = 1.38). The adult disability services knowledge scale (ranges from 0 to 15) demonstrated a diminutive increase from post-survey (<emph>M</emph> = 9.42, <emph>SD</emph> = 1.98) to follow-up survey (<emph>M</emph> = 10, <emph>SD</emph> = 1.71). The absence of an increase in knowledge at the follow-up survey suggests that participants are not continuing to acquire significant knowledge. Notably, only 41.48% (<emph>n</emph> = 12) of the participants completed the follow-up survey. Thus, these findings need to be interpreted with caution. A longer training which includes more information about school-based and adult disability service topics may further help improve knowledge scores. During the interviews, some participants stated they wished they could continue to meet to gain greater knowledge. Accordingly, researchers may consider providing ongoing support (e.g. weekly meetings, newsletter with local resources, family support groups) to Latinx families.</p> <p>Second, aligned with prior research ([<reflink idref="bib29" id="ref60">29</reflink>]; [<reflink idref="bib33" id="ref61">33</reflink>]), participants in this study reported greater comfort with advocacy skills after participating in the ASISTIR program. It is important for programs intentionally developed for Latinx families to target advocacy skills because Latinx (vs non-Latinx White) families report having fewer advocacy skills (Burke, [<reflink idref="bib25" id="ref62">25</reflink>]) and because advocacy skills may help families access needed services for their offspring ([<reflink idref="bib20" id="ref63">20</reflink>]). Based on extant literature it is unclear how knowledge enhances advocacy skills. [<reflink idref="bib11" id="ref64">11</reflink>] suggests that for Latinx families of children with disabilities, knowledge improves parenting self-efficacy (i.e. an individual's judgment about how well he or she can completely perform their role as a parent; [<reflink idref="bib5" id="ref65">5</reflink>]), thus enhancing parents advocacy efforts. In this study, we did not measure parent self-efficacy, yet based on the interview data, families reported feeling more knowledgeable thus more apt to advocate (e.g. advocate for SMART IEP goals or apply for SSI). Unfortunately, for Latinx families, parent advocacy efforts may be difficult because of systemic barriers (e.g. language differences, discrimination, [<reflink idref="bib3" id="ref66">3</reflink>]). To these ends, it is important for programs for Latinx families to focus on improving participant knowledge and accordingly improving advocacy skills. Notably, researchers may provide resources to navigate systemic barriers (e.g. local resources in their native language; translated information; online tools for translation).</p> <p>Although not directly examined in this study, it may be that previous attendance at parent advocacy programs moderated changes in outcomes related to school-based transition planning, adult disability services knowledge, and advocacy skills. During the interviews, some participants reported having attended other advocacy programs whereas other participants reported that ASISTIR was their first advocacy program. The influence of prior attendance at advocacy programs should be examined as a moderator in future research. If attendance does moderate the gains in knowledge and advocacy, this may align with [<reflink idref="bib36" id="ref67">36</reflink>] CCW framework suggesting that social capital (i.e. having peers who provide support to navigate systems) matters. In addition, future research should measure the potential factors (e.g. participants personality traits such as introversion or extroversion) that may contribute to participants forming peer connections.</p> <p>Third, participants demonstrated increased empowerment after attending the ASISTIR program. This finding aligns with some extant literature which has demonstrated increased empowerment after participating in an advocacy program exclusively developed for Latinx families ([<reflink idref="bib7" id="ref68">7</reflink>]; [<reflink idref="bib29" id="ref69">29</reflink>]). Further, this finding aligns with extant literature which suggests that when an intervention is adapted for a <emph>specific</emph> racial or ethnic group, such as Latinx families, the intervention is significantly more effective ([<reflink idref="bib10" id="ref70">10</reflink>]). It may be that when a program is developed exclusively for Latinx families (vs programs developed for culturally and linguistically diverse families), there are improvements in participant empowerment. By using the EVF (which focuses on Latinx families, [<reflink idref="bib6" id="ref71">6</reflink>]) to develop ASISTIR, the program may have been more targeted to Latinx families and, as such, able to improve empowerment.</p> <p>Fourth, the ASISTIR program was feasible and acceptable to Latinx families of autistic youth. Similar to other advocacy programs for Latinx families (e.g. FIRME; [<reflink idref="bib29" id="ref72">29</reflink>]), the ASISTIR format was feasible for participants. This may, in part, be due to the utilization of an online platform. Indeed, participants reported the online training was convenient and eliminated logistical barriers (e.g. transportation, childcare). This finding is similar to extant research which has found that participants in transition programs have reported that an online modality was convenient ([<reflink idref="bib31" id="ref73">31</reflink>]). Due to the aftermath of the COVID-19 pandemic, families may feel more comfortable using technology ([<reflink idref="bib15" id="ref74">15</reflink>]). However, future researchers using an online platform must also consider the technology divide which may limit Latinx family participation ([<reflink idref="bib16" id="ref75">16</reflink>]). Specifically, Latinx (vs White) adults in the United States are less likely to report having a traditional computer or high-speed Internet at home ([<reflink idref="bib4" id="ref76">4</reflink>]). To this end, researchers conducting an online-only training should consider providing technological devices to facilitate access to online trainings. Notably, some participants reported an in-person format is preferred. Accordingly, future research should discern whether modality impacts participant attendance and attrition rates.</p> <hd id="AN0184233758-39">Limitations</hd> <p>Although the findings are promising, there are limitations. This was a single group study (i.e. no control group). Since there was no control group, changes in the dependent variables cannot be attributed to the ASISTIR program ([<reflink idref="bib9" id="ref77">9</reflink>]). Also, only a subsample completed the follow-up surveys, formative evaluations, and summative evaluations. More research is needed to discern why participants opted to not complete these data collection measures. Because the formative and summative evaluations were anonymous, it is unclear which participants completed or did not complete the evaluations. However, all participants completed the follow-up interviews, which asked questions related to the feasibility and acceptability of ASISTIR. Since all participants completed the follow-up interviews, it may be more culturally responsive to conduct individual interviews (vs summative evaluations) with Latinx participants to examine their perceptions of the program. Extant literature has suggested that Latinx participants prefer to participate in research studies which include <emph>la platica</emph> ([<reflink idref="bib23" id="ref78">23</reflink>]), such as individual interviews.</p> <hd id="AN0184233758-40">Directions for future research</hd> <p>To determine the effectiveness of the ASISTIR program, a randomized controlled trial (RCT) should be conducted. By randomizing participants and having a control group, researchers can more rigorously determine the efficacy of the ASISTIR program ([<reflink idref="bib9" id="ref79">9</reflink>]). This is especially important because ASISTIR is the second transition program to be culturally adapted and pilot tested with Latinx families ([<reflink idref="bib19" id="ref80">19</reflink>]). Currently, there is not a transition planning program for Latinx families which has been tested with an RCT design. However, before conducting an RCT, ASISTIR should be refined based on participant's feedback (e.g. adding sessions) and tested via a pilot study. Following the pilot study, an RCT could be conducted.</p> <p>Also, future research should consider more heterogenous samples. Most participants in this study were Spanish-speaking mothers from Mexican heritages. Given that there may be intra-cultural differences based on country of origin ([<reflink idref="bib23" id="ref81">23</reflink>]), it is necessary for future research to reflect diverse participants. This is especially important because of the growing diversity of Latinx individuals in the United States. By testing ASISTIR among more heterogenous families, we can ascertain the generalizability of the effectiveness of the program. During the cultural adaption of a program and its implementation it critical to include autistic individuals in the process ([<reflink idref="bib28" id="ref82">28</reflink>]). In this study, only families of autistic youth were included.</p> <hd id="AN0184233758-41">Implications for practice</hd> <p>The size of the cohorts should be considered before the next iteration of the ASISTIR program. In this study, the number of participants in a cohort ranged from two to sixteen participants. Two participants in a cohort may be too small for participants to gain the positive effects of being in a cohort model. Extant literature has suggested that a cohort model allows participants to increase connectedness among parents of individuals with disabilities ([<reflink idref="bib33" id="ref83">33</reflink>]). However, a cohort with sixteen participants may be too large for participants to feel connected to one another. Accordingly, the next iteration of ASISTIR may opt to create cohort groups ranging from three to 14 participants.</p> <p>Regarding the instructor of ASISTIR, overwhelmingly, participants reported a bilingual and bicultural facilitator should lead ASISTIR. However, participants also suggested having a combination of instructors (i.e. parents, agency representative, and autistic youth) for the next ASISTIR program. Specifically, participants reported that it would be beneficial to hear from different perspectives. Similar to extant programs (e.g. VAP-T), the next iteration of ASISTIR should include a variety of instructors. However, unlike extant programs, individuals should either reflect the Latinx culture or include cultural brokers.</p> <p>Given the service disparities and poor post-school outcomes of Latinx (vs non-Latinx White youth with ASD (e.g. [<reflink idref="bib30" id="ref84">30</reflink>]) it is important to address the unique needs of Latinx families of transition-aged youth with ASD. However, few parent education programs target Latinx families of transition-aged youth with ASD. The findings of this study contribute to the literature suggesting that a culturally adapted, transition planning program can improve: school-based transition planning and adult disability services knowledge, advocacy and empowerment among Latinx families of youth with ASD. This study provides preliminary evidence about the effectiveness, feasibility, and acceptability of the ASISTIR program.</p> <hd id="AN0184233758-42">Supplemental Material</hd> <p>Graph: Supplemental material, sj-docx-1-aut-10.1177_13623613241292159 for Examining the effectiveness, feasibility, and acceptability of an advocacy program for Latinx families of transition-aged autistic youth by Janeth Aleman-Tovar, Meghan M Burke, Edwin Monárrez and Nicole Espinosa Zaldivar in Autism</p> <ref id="AN0184233758-43"> <title> References </title> <blist> <bibl id="bib1" idref="ref25" type="bt">1</bibl> <bibtext> Aleman-Tovar J., Burke M. M. (under review). 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Race Ethnicity and Education, 8(1), 69–91.</bibtext> </blist> </ref> <ref id="AN0184233758-44"> <title> Footnotes </title> <blist> <bibtext> The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.</bibtext> </blist> <blist> <bibtext> The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research supports The Autism Program of Illinois.</bibtext> </blist> <blist> <bibtext> Janeth Aleman-Tovar</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0001-7367-7475 Meghan M. Burke</bibtext> </blist> <blist> <bibtext>Graph https://orcid.org/0000-0001-5287-2351</bibtext> </blist> <blist> <bibtext> Supplemental material for this article is available online.</bibtext> </blist> </ref> <aug> <p>By Janeth Aleman-Tovar; Meghan M Burke; Edwin Monárrez and Nicole Espinosa Zaldivar</p> <p>Reported by Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib34" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib32" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib33" firstref="ref7"></nolink> <nolink nlid="nl4" bibid="bib14" firstref="ref8"></nolink> <nolink nlid="nl5" bibid="bib27" firstref="ref9"></nolink> <nolink nlid="nl6" bibid="bib29" firstref="ref11"></nolink> <nolink nlid="nl7" bibid="bib21" firstref="ref13"></nolink> <nolink nlid="nl8" bibid="bib18" firstref="ref15"></nolink> <nolink nlid="nl9" bibid="bib10" firstref="ref16"></nolink> <nolink nlid="nl10" bibid="bib20" firstref="ref17"></nolink> <nolink nlid="nl11" bibid="bib24" firstref="ref18"></nolink> <nolink nlid="nl12" bibid="bib19" firstref="ref21"></nolink> <nolink nlid="nl13" bibid="bib25" firstref="ref27"></nolink> <nolink nlid="nl14" bibid="bib36" firstref="ref33"></nolink> <nolink nlid="nl15" bibid="bib35" firstref="ref36"></nolink> <nolink nlid="nl16" bibid="bib17" firstref="ref37"></nolink> <nolink nlid="nl17" bibid="bib26" firstref="ref38"></nolink> <nolink nlid="nl18" bibid="bib23" firstref="ref39"></nolink> <nolink nlid="nl19" bibid="bib22" firstref="ref40"></nolink> <nolink nlid="nl20" bibid="bib12" firstref="ref42"></nolink> <nolink nlid="nl21" bibid="bib13" firstref="ref54"></nolink> <nolink nlid="nl22" bibid="bib11" firstref="ref64"></nolink> <nolink nlid="nl23" bibid="bib31" firstref="ref73"></nolink> <nolink nlid="nl24" bibid="bib15" firstref="ref74"></nolink> <nolink nlid="nl25" bibid="bib16" firstref="ref75"></nolink> <nolink nlid="nl26" bibid="bib28" firstref="ref82"></nolink> <nolink nlid="nl27" bibid="bib30" firstref="ref84"></nolink>
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  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Advocacy%22">Advocacy</searchLink><br /><searchLink fieldCode="DE" term="%22Hispanic+Americans%22">Hispanic Americans</searchLink><br /><searchLink fieldCode="DE" term="%22Family+%28Sociological+Unit%29%22">Family (Sociological Unit)</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Youth%22">Youth</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Effectiveness%22">Program Effectiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Individualized+Transition+Plans%22">Individualized Transition Plans</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Differences%22">Cultural Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Language+Usage%22">Language Usage</searchLink><br /><searchLink fieldCode="DE" term="%22Special+Education%22">Special Education</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Services%22">Social Services</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/13623613241292159
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1362-3613<br />1461-7005
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Families of autistic youth often support their children's transition from adolescence to adulthood. During this time, families learn to navigate the complex shift from school-based to adult disability services. For Latinx (vs non-Latinx White) families of autistic youth, transition is especially difficult because of the systemic barriers (e.g. language) Latinx families face when accessing services. Unfortunately, few interventions aim to improve the transition among Latinx families of autistic transition-aged youth. This study examines the effectiveness, feasibility, and acceptability of the ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services) program, a six-session program for Latinx families of autistic youth, with respect to increasing: school-based transition planning and adult disability services knowledge, empowerment, and advocacy. Twenty-nine participants were included in this single-group, intervention study. After completing the program, participants demonstrated significantly improved: knowledge of school-based transition planning and adult disability services, advocacy, and empowerment. In addition, participants were highly satisfied with the program, based on the formative and summative evaluations and individual interviews. Implications for research and practice are discussed.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1466087
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1466087
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1177/13623613241292159
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 14
        StartPage: 1005
    Subjects:
      – SubjectFull: Advocacy
        Type: general
      – SubjectFull: Hispanic Americans
        Type: general
      – SubjectFull: Family (Sociological Unit)
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Youth
        Type: general
      – SubjectFull: Program Effectiveness
        Type: general
      – SubjectFull: Barriers
        Type: general
      – SubjectFull: Individualized Transition Plans
        Type: general
      – SubjectFull: Cultural Differences
        Type: general
      – SubjectFull: Language Usage
        Type: general
      – SubjectFull: Special Education
        Type: general
      – SubjectFull: Social Services
        Type: general
    Titles:
      – TitleFull: Examining the Effectiveness, Feasibility, and Acceptability of an Advocacy Program for Latinx Families of Transition-Aged Autistic Youth
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Janeth Aleman-Tovar
      – PersonEntity:
          Name:
            NameFull: Meghan M. Burke
      – PersonEntity:
          Name:
            NameFull: Edwin Monárrez
      – PersonEntity:
          Name:
            NameFull: Nicole Espinosa Zaldivar
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 04
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 1362-3613
            – Type: issn-electronic
              Value: 1461-7005
          Numbering:
            – Type: volume
              Value: 29
            – Type: issue
              Value: 4
          Titles:
            – TitleFull: Autism: The International Journal of Research and Practice
              Type: main
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