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Parent and Provider Perspectives on Family Navigation for Early Identification of Children with Autism Spectrum Disorder

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Title: Parent and Provider Perspectives on Family Navigation for Early Identification of Children with Autism Spectrum Disorder
Language: English
Authors: Christina Cheung (ORCID 0009-0004-5234-2042), Jacqueline Jones, Kristina Hightshoe, Jeanette Córdova, Yurico Gutiérrez, Jodi K. Dooling-Litfin, Margaret M. Tomcho (ORCID 0000-0002-4474-0292), Silvia Gutiérrez-Raghunath, Cordelia Robinson Rosenberg, Steven A. Rosenberg (ORCID 0000-0002-4344-3608), Carolyn DiGuiseppi (ORCID 0000-0002-6440-7817)
Source: Focus on Autism and Other Developmental Disabilities. 2026 41(1):42-53.
Availability: SAGE Publications and Hammill Institute on Disabilities. 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: 12
Publication Date: 2026
Sponsoring Agency: Health Resources and Services Administration (HRSA) (DHHS)
Contract Number: R40MC27702
Document Type: Journal Articles
Reports - Research
Descriptors: Autism Spectrum Disorders, Disability Identification, Clinical Diagnosis, Family Programs, Urban Areas, Services, Parents, Allied Health Personnel, Teachers, Program Effectiveness, Feasibility Studies, Access to Health Care, Hispanic Americans, Minority Groups, English (Second Language)
Geographic Terms: Colorado
DOI: 10.1177/10883576251396515
ISSN: 1088-3576
1538-4829
Abstract: Early intervention (EI) can improve developmental outcomes among children with autism spectrum disorder (ASD), but underdiagnosis and undertreatment are common among low-income families and children of racial/ethnic minorities. The Screening and Linkage to Services for Autism (SaLSA) trial (ClinicalTrials.gov Identifier: NCT02374541) demonstrated that autism family navigation (AFN) improved the likelihood that young children at risk for ASD completed a diagnostic evaluation. In a qualitative descriptive U.S. study, we recruited parent participants, health care and EI providers and staff, and project personnel from the SaLSA trial to participate in semi-structured interviews on acceptability and feasibility of AFN services for families seen in urban safety-net clinical settings (i.e., where care is provided regardless of ability to pay). Iterative theme analysis was performed. A community focus group was conducted for triangulation to improve validity. Results demonstrated four main themes: (1) "It's all in a name: the risk of engagement"; (2) "Community partnerships require authentic trust"; (3) "System interactions and interrelationships"; and (4) "What is an autism family navigator: family navigation or clinical role?" This study adds perspectives of interested parties of AFN within an urban underserved population. Recommendations for navigation program content and delivery can inform future modifications to AFN programs in the context of the communities they serve.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1496492
Database: ERIC
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  Value: <anid>AN0191101965;fdd01mar.26;2026Jan28.00:49;v2.2.500</anid> <title id="AN0191101965-1">Parent and Provider Perspectives on Family Navigation for Early Identification of Children With Autism Spectrum Disorder </title> <p>Early intervention (EI) can improve developmental outcomes among children with autism spectrum disorder (ASD), but underdiagnosis and undertreatment are common among low-income families and children of racial/ethnic minorities. The Screening and Linkage to Services for Autism (SaLSA) trial (ClinicalTrials.gov Identifier: NCT02374541) demonstrated that autism family navigation (AFN) improved the likelihood that young children at risk for ASD completed a diagnostic evaluation. In a qualitative descriptive U.S. study, we recruited parent participants, health care and EI providers and staff, and project personnel from the SaLSA trial to participate in semi-structured interviews on acceptability and feasibility of AFN services for families seen in urban safety-net clinical settings (i.e., where care is provided regardless of ability to pay). Iterative theme analysis was performed. A community focus group was conducted for triangulation to improve validity. Results demonstrated four main themes: (<reflink idref="bib1" id="ref1">1</reflink>) "It's all in a name: the risk of engagement"; (<reflink idref="bib2" id="ref2">2</reflink>) "Community partnerships require authentic trust"; (<reflink idref="bib3" id="ref3">3</reflink>) "System interactions and interrelationships"; and (<reflink idref="bib4" id="ref4">4</reflink>) "What is an autism family navigator: family navigation or clinical role?" This study adds perspectives of interested parties of AFN within an urban underserved population. Recommendations for navigation program content and delivery can inform future modifications to AFN programs in the context of the communities they serve.</p> <p>Keywords: patient navigation; autism spectrum disorder; health services accessibility; family support systems; early intervention; Hispanic and Latino families; Spanish speaking</p> <hd id="AN0191101965-2">Prevalence and Screening of Autism Spectrum Disorders</hd> <p>The prevalence of autism spectrum disorders (ASD) has significantly increased in the past decade; the Centers for Disease Control and Prevention estimates that about 1 in 36 children have ASD ([<reflink idref="bib6" id="ref5">6</reflink>]; [<reflink idref="bib27" id="ref6">27</reflink>]). There is continued emphasis on early identification and diagnosis of ASD in young children based on evidence of benefits for cognitive and language skills when such children engage with early intervention (EI) services ([<reflink idref="bib39" id="ref7">39</reflink>]). American Academy of Pediatrics guidelines support screening children at 18 and 24 months based on evidence that characteristics of ASD can be seen as early as ages 12 to 24 months ([<reflink idref="bib44" id="ref8">44</reflink>]). Early identification can include screening by health care professionals as well as observation and reports by caregivers and other involved parties, (e.g., those in educational settings). Once a child is identified as possibly having ASD, families participate in an often complex diagnostic process with clinicians and EI assessment programs. Despite the increased prevalence of ASD, it remains underdiagnosed and undertreated in young children, with the mean age of ASD diagnosis in the United States being 3 to 5 years of age ([<reflink idref="bib26" id="ref9">26</reflink>]).</p> <p>Underdiagnosis and undertreatment of ASD are particularly common in low-income and underrepresented minoritized families due to social, cultural and linguistic barriers to accessing care ([<reflink idref="bib40" id="ref10">40</reflink>]; [<reflink idref="bib42" id="ref11">42</reflink>]). Lack of equitable resources such as access to care and transportation among children of color compared with their white counterparts, negative interactions with health care providers that perpetuate mistrust and stigma, and incongruency in resources and clinical materials in languages other than English are examples of systemic barriers that delay access to autism diagnostic services ([<reflink idref="bib17" id="ref12">17</reflink>]; [<reflink idref="bib29" id="ref13">29</reflink>]). Cultural and social barriers affect the way mothers think about child development and interact with health care systems secondary to differences in cultural customs, values, and expectations compared with the dominant culture ([<reflink idref="bib30" id="ref14">30</reflink>]). Unfortunately, there are limited data regarding fathers in child developmental research and additional paucity in research of Latino fathers ([<reflink idref="bib4" id="ref15">4</reflink>]; [<reflink idref="bib31" id="ref16">31</reflink>]). (Note: When paraphrasing published literature, we have used the terminology for ethnicity utilized by the cited author.) Cabrera and Coll suggest this may be due to difficulty forming generalizations across heterogeneous Latino groups and the category of "Latino" being problematic; they propose a traditional and emergent construct of Latino fatherhood involving complex views of masculinity and roles with their children. Furthermore, parents of children with ASD often report feeling overwhelmed by the diagnosis and coordination of recommended services and resources, posing a significant burden to their families ([<reflink idref="bib33" id="ref17">33</reflink>]). In comparison to non-Latino white families, Latino families, regardless of English proficiency, have reported fewer current therapy hours and more unmet therapy needs, and greater likelihood of experiencing barriers related to knowledge about ASD and trust in providers ([<reflink idref="bib43" id="ref18">43</reflink>]). These disparities in ASD diagnosis and services demonstrate the need to provide accessible interventions to diverse populations. Studies additionally identify the need for culturally sensitive interventions such as cultural adaptations of screening tools and language concordance ([<reflink idref="bib24" id="ref19">24</reflink>]; [<reflink idref="bib35" id="ref20">35</reflink>]).</p> <hd id="AN0191101965-3">Patient Navigation as an Intervention</hd> <p>Patient navigation, in which trained personnel facilitate patients' access to care, presents a promising approach to helping families obtain diagnoses and services for young children with ASD. Patient navigation was first developed to address disparities in care for patients with cancer and other palliative care diagnoses ([<reflink idref="bib13" id="ref21">13</reflink>]). Patient navigators can help guide patients through the health care system for their screening, diagnosis, and follow-up related to a medical condition. Navigators can provide educational and community resources and psychosocial support to patients in identifying and reducing barriers to quality and timely care. Among cancer patients, patient navigation improves time-to-diagnosis, treatment initiation, and follow-up, particularly in underserved patients in low-resourced settings ([<reflink idref="bib14" id="ref22">14</reflink>]). Patients also report that navigation services address fragmented and confusing care in a time of stress ([<reflink idref="bib5" id="ref23">5</reflink>]; [<reflink idref="bib37" id="ref24">37</reflink>]). Patient navigation programs have been particularly successful in addressing disparities among low-income and minoritized families who have more difficulty navigating the health care system and accessing care ([<reflink idref="bib21" id="ref25">21</reflink>]). Navigation services for children and their families have been used to promote audiological testing after failed screening and to facilitate EI referral completion among children identified with developmental delays, showing promising results for families of young children with ASD ([<reflink idref="bib3" id="ref26">3</reflink>]; [<reflink idref="bib18" id="ref27">18</reflink>]).</p> <p>Recent studies have confirmed the efficacy of autism family navigation (AFN) as an intervention to improve timely diagnosis and service provision for ASD ([<reflink idref="bib2" id="ref28">2</reflink>]; [<reflink idref="bib9" id="ref29">9</reflink>]; [<reflink idref="bib10" id="ref30">10</reflink>], [<reflink idref="bib11" id="ref31">11</reflink>]; [<reflink idref="bib33" id="ref32">33</reflink>]). Early findings showed that children in families that received navigation services were significantly more likely than children who received routine care to complete an ASD diagnostic evaluation and appointments for suggested services ([<reflink idref="bib10" id="ref33">10</reflink>]; [<reflink idref="bib33" id="ref34">33</reflink>]). Two recent randomized controlled trials demonstrated higher likelihood of completing diagnostic evaluation among children randomized to receive AFN services ([<reflink idref="bib9" id="ref35">9</reflink>]; [<reflink idref="bib11" id="ref36">11</reflink>]), and that the effect was greater among Hispanic than non-Hispanic families ([<reflink idref="bib11" id="ref37">11</reflink>]). Of note, several studies encountered difficulties in contacting potential participants or high refusal or dropout rates among families recruited to the AFN program, potentially reducing the impact of AFN ([<reflink idref="bib9" id="ref38">9</reflink>]; [<reflink idref="bib11" id="ref39">11</reflink>]; [<reflink idref="bib20" id="ref40">20</reflink>]; [<reflink idref="bib33" id="ref41">33</reflink>]), although the papers did not report reasons for these challenges.</p> <hd id="AN0191101965-4">Perspectives and Implementation of Autism Family Navigation Services</hd> <p>[<reflink idref="bib1" id="ref42">1</reflink>] used a mixed-methods approach to identify potential failures in AFN implementation. Five areas identified included difficulties in setting up community-based services, initial family meetings, training of navigators, monitoring intervention fidelity, and attending testing appointments. While key information from staff regarding program implementation was examined, this study did not delve into perspectives of families receiving the navigation services. Another study reported that variability in timing, family factors, and implementation led to mixed effects on caregiver strain and parent activation among families receiving AFN services ([<reflink idref="bib8" id="ref43">8</reflink>]). These authors also qualitatively identified factors in family and environmental context, skills and resources gained by parents, and variability in the type of AFN services, which influenced family perceptions regarding helpfulness of AFN services. However, the families represented in the qualitative sample was well-educated and most were insured, of white race and not of Latino or Hispanic origin. In addition, this qualitative analysis did not explore cultural or linguistic barriers. A qualitative study of participants from the [<reflink idref="bib11" id="ref44">11</reflink>] trial evaluated adaptations to AFN programs recommended by participants and navigators ([<reflink idref="bib23" id="ref45">23</reflink>]). Participants recommended a longer engagement period, better integration with medical care teams, and improving navigator training. Studies generally did not report detailed qualitative data on facilitators or barriers to working with patient navigators and whether AFN programs were deemed necessary by families, which may have been useful in understanding recruitment, loss to follow-up and retention issues (Broder-Fingert et al.; [<reflink idref="bib9" id="ref46">9</reflink>]; [<reflink idref="bib10" id="ref47">10</reflink>]; [<reflink idref="bib33" id="ref48">33</reflink>]). Levinson et al. did note that navigators could incorporate a more personalized approach for families that may not perceive AFN services as necessary or that may require more support in implementation of AFN.</p> <p>Studies that assessed individuals' perceptions and experiences working with patient navigators in the treatment and care of cancer and other chronic illnesses provide useful insight into the perceived strengths and weaknesses of navigation that can potentially enhance such services ([<reflink idref="bib5" id="ref49">5</reflink>]; [<reflink idref="bib15" id="ref50">15</reflink>]; [<reflink idref="bib32" id="ref51">32</reflink>]; [<reflink idref="bib36" id="ref52">36</reflink>]). There is a similar need for data on facilitators and barriers to receiving AFN services, particularly among low-income populations. Understanding family perspectives may assist in improved planning and implementation of services for children and families affected by ASD to address barriers to prompt diagnostic evaluation ([<reflink idref="bib19" id="ref53">19</reflink>]). Given evidence of the positive impact of AFN programs ([<reflink idref="bib9" id="ref54">9</reflink>]; [<reflink idref="bib10" id="ref55">10</reflink>], [<reflink idref="bib11" id="ref56">11</reflink>]; [<reflink idref="bib33" id="ref57">33</reflink>]), insight on the feasibility and acceptability of navigations services can guide the future implementation of such programs. Family navigator programs can potentially improve care and outcomes for parents of children with ASD by providing an alternative approach to standard information and support services.</p> <p>The Screening and Linkage to Services for Autism (SaLSA) trial (ClinicalTrials.gov Identifier: NCT02374541) was a pragmatic randomized controlled trial developed and implemented among largely low-income, Hispanic families seen for care in an urban safety-net community health system, in collaboration with a community nonprofit organization providing comprehensive developmental assessments and EI services for children referred after autism-positive screening (hereafter "EI organization"), and El Grupo Vida, a local community organization that provides support to Hispanic/Latino families that care for and support people with disabilities. Autism family navigation increased the likelihood of completing a diagnostic evaluation for autism among these families, but not all families offered AFN received or accepted these services ([<reflink idref="bib9" id="ref58">9</reflink>]). The current study aims to add qualitative perspectives of families of young children being evaluated for ASD who participated in or declined AFN services and of professionals who assist such families during the screening and diagnostic process. This study uniquely adds cultural perspectives about AFN from a population that is primarily Hispanic and low income, as well as professional perspectives of health care providers and EI professionals. The objective was to examine the feasibility and acceptability of AFN among families in an urban safety-net health care system to better inform future development and implementation of AFN programs.</p> <hd id="AN0191101965-5">Method</hd> <p></p> <hd id="AN0191101965-6">Qualitative Approach</hd> <p>During the SaLSA trial, we initiated a qualitative descriptive study using theme analysis ([<reflink idref="bib34" id="ref59">34</reflink>]) of semi-structured telephone interviews to better understand barriers and facilitators to participation in AFN services among SaLSA trial participants and acceptability and feasibility of these services among a primarily Hispanic, largely Spanish-speaking urban population seen in a safety-net health care system. Consultations with the community occurred as part of the research and program development process. Specifically, project team members included representatives from a network of Spanish-speaking families who have children with disabilities and from the participating community health system and EI organizations, all of whom collaborated on all aspects of the project, including research study design, development, implementation and evaluation of the AFN program, and interpretation of findings. The Colorado Multiple Institutional Review Board (COMIRB) reviewed and approved the protocol. The qualitative research reported here was led by a senior PhD investigator with extensive qualitative research experience; the research team comprised investigators from epidemiology and psychology, graduate students, clinical and EI organization leads, an AFN and a parent advocate; three team members were bilingual and identified as Latina or Latine. The team members that collected and analyzed the data had no clinical relationship with the participants.</p> <hd id="AN0191101965-7">Setting and Sampling Strategy</hd> <p>Key informants (KI) included parents of children randomly allocated to receive the AFN intervention and providers and staff of the partner community health system and EI organization. The sampling frame for recruitment of parent KI comprised 27 families: 22 families who were randomized to and received AFN services, one family that was randomized and consented to AFN but failed to complete the initial intake and could not be recontacted, and four families randomized to the AFN intervention who declined navigation. For the 22 families receiving AFN, interviews were conducted after AFN services had ended. The number of contacts between navigators and families receiving AFN varied based on individual family needs. For this analysis, those with three or more telephone or in-person contacts with the navigator in addition to the initial intake appointment were categorized as "high-contact," and those with two or fewer direct navigator contacts after initial intake as "low-contact." Nearly all (95%) families participating in AFN received care coordination via navigator contacts with and between the health care system and EI organization, informed by navigators' ongoing health record review for screening test results, referral information, and status updates from providers. Types of navigation services provided to participating families have been detailed previously ([<reflink idref="bib20" id="ref60">20</reflink>]). Providers and staff at the community health system (<emph>n</emph> = 7) and EI organization (<emph>n</emph> = 5) were identified as potential KI based on involvement in screening, referral, diagnosis, or EI services for autism in children and representation from both partner sites. Three key SaLSA trial personnel representing navigators and community partner organizations were also invited to interview. We obtained verbal consent from each KI, explaining the study purpose, details of participation, and the study's voluntary nature. Each participating KI received a $10 gift card for their time.</p> <hd id="AN0191101965-8">Procedures</hd> <p>We developed semi-structured interview guides specific to each group of families (i.e., declining, low-contact, or high-contact families), providers and staff, and trial personnel. The interviews aimed to assess providers', staff and families' perceptions of the acceptability and feasibility of the AFN intervention. Informed by the scientific/implementation literature and clinical and prior research experience, the guide included factors such as awareness, aspects of working with the navigator that were most and least effective and liked or disliked, and barriers and facilitators to AFN implementation. Table 1 provides an abbreviated version of the semi-structured interview guides. The interview guides were evaluated and refined across interviews based on insights from participants.</p> <p>Table 1. Semi-Structured Interviews of Families and Professional Staff: Topic Questions.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="center">Participant</th><th align="center">Reach, fidelity, and demand</th><th align="center">Acceptability</th><th align="center">Implementation and integration</th></tr></thead><tbody><tr><td>Families</td><td>• What <bold>helped you first decide</bold> you would like to work with the PN?• How similar was the kind of help the PN gave you to the kind of help she said she would give?• <bold><italic>Low PN-use families:</italic></bold> You didn't use much help from the PN. That can be very understandable. Can you tell me <bold>why you didn't work much with</bold> the PN?• Some families didn't want any help from a PN. <bold>How could we encourage more families</bold> to use help from a PN?</td><td>• How did it make you <bold>feel</bold> to have the PN available to help your family?• What did <bold>you like most</bold> about working with the PN? What was especially helpful to you?• Were there times when you <bold>regretted</bold> having a PN? <italic>If yes:</italic> What made you regret it?• Do you think it's a <bold>good idea</bold> to have PNs at [CHS] to help families get services for their children? Why do you think that?</td><td>• Were there ways that the PN offered help or worked with you that made it <bold>easy</bold> for you? <italic>If yes:</italic> What do you think <bold>made these so easy</bold>?• Were there ways that the PN offered help or worked with you that made it <bold>hard</bold> for you<italic>? If yes:</italic> What do you think <bold>made these so hard</bold>?• What are some ways that the PN could have been <bold>more helpful</bold> to you and <child>?</td></tr><tr><td>Health care and EI providers and staff</td><td>• Not every family who was offered the opportunity to work with an APN accepted the offer or used her help. How could we motivate more families in your clinic/organization to take advantage of assistance from an APN?</td><td>• How did you <bold>feel</bold> about having an APN program at [CHS]/[EIO] to assist children who screened positive on the M-CHAT-R?• What did you particularly <bold>like</bold> about the experience of implementing/having the APN program at [CHS]?• Did you <bold>regret</bold> at any time that [CHS] was involved with the APN program? What were your concerns about being involved?• How <bold>appropriate</bold> is it to have APN programs in clinics like [CHS]?</td><td>• What <bold>worked well</bold> for [CHS]/[EIO] and its staff in implementing/ participating in the APN program?• What were some <bold>things that were easy/hard</bold> for your organization and its staff to do as far as working with an APN? What do you think <bold>made these easy/ hard</bold>?• How <bold>well did you feel</bold> the APN program was <bold>integrated</bold> into [CHS]/ [EIO]'s usual practice or system?</td></tr></tbody></table> </ephtml> </p> <p>1 <emph>Note</emph>. PN = patient navigator; EI = early intervention; APN = autism patient navigator; CHS = community health system; EIO = Early Intervention Organization.</p> <hd id="AN0191101965-9">Data Collection</hd> <p>Parent, provider, and staff telephone interviews lasting 15 to 30 min were conducted by a bilingual, Latina doctoral student (YG) with qualitative research training and experience. Trial personnel in-person interviews, conducted by a senior investigator (JJ), lasted 30 to 60 min. No personal identifiers were collected during KI interviews. Parents that consented to receive AFN services had provided demographic data, which were linked to their KI interviews through unique identification numbers.</p> <hd id="AN0191101965-10">Data Processing and Analysis</hd> <p>Interviews were audio recorded with permission (with one family KI declining permission) and professionally transcribed and translated. Interviews were debriefed with the research team as part of concurrent data collection, interview guide refinement, and data analysis standards in qualitative descriptive research ([<reflink idref="bib34" id="ref61">34</reflink>]). Translated transcriptions were then reviewed with the audio recording by a native Spanish-speaking researcher and minor edits were made. Transcripts were analyzed using an inductive and deductive team-based approach to theme analysis ([<reflink idref="bib22" id="ref62">22</reflink>]; [<reflink idref="bib38" id="ref63">38</reflink>]). Inductive theme analysis starts with each transcript being read individually by the analytic team (CD, JJ, CC); initial codes are noted and then compared across the group. Informed by analyst team discussions, literature, and clinical experience of the interprofessional research team, transcripts were then deductively analyzed looking for existing codes. The entire data set was reviewed by all analysts individually. A codebook was maintained as part of the audit trail in Atlas Ti V9. Team discussions provided opportunity for researcher and interprofessional triangulation. Codes and patterns of meaning were discussed and then themes were created, named, and defined to explain the content. Low-inference interpretations around the data were discussed within the research team until consensus about informational saturation was reached. Low-inference interpretation means investigators stayed close to the concrete language of participants as they looked for patterns of meaning in context. Interview field notes were also used as text data to supplement contextual information. After all interviews were completed, a community focus group of mothers of children with autism who were not involved in the SaLSA trial, recruited in collaboration with El Grupo Vida, was held to re-contextualize the findings and triangulate data interpretation with ecological validity/transferability of community contextual understanding of issues surrounding screening and services for autism ([<reflink idref="bib7" id="ref64">7</reflink>]). The 1-hr in-person focus group, facilitated by a senior investigator (JJ) and parent advocate (JC), was conducted in Spanish and English, audio recorded with permission, transcribed, and translated into English. The transcript was analyzed using theme analysis techniques described above to further refine the themes and then discussed with the interprofessional research team. Participant quotes illustrate thematic findings.</p> <hd id="AN0191101965-11">Results</hd> <p>Of 27 eligible families recruited for qualitative interviews, 10 were successfully contacted and seven mothers were interviewed (online supplemental file). Six interviewed mothers received AFN services, of whom three were classified as low contact and three as high contact; their demographic information is summarized in Table 2. Of their six children receiving AFN services, three were diagnosed with ASD and two with other developmental delays requiring services; one did not complete an evaluation. The seventh interviewed mother was randomized to AFN but declined AFN services. Three KI from the community health system and four from the EI organization were interviewed, along with one navigator and two project partners (online supplemental file); all but one identified as women. The focus group consisted of five mothers of children with ASD, all of whom were Spanish-speaking and identified as Hispanic or Latina/e.</p> <p>Table 2. Demographic Data of Parent Participants.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /></colgroup><thead><tr><th align="center">Characteristics</th><th align="center">Proportion of participants (%)</th></tr></thead><tbody><tr><td>Female gender</td><td>100</td></tr><tr><td>Hispanic ethnicity</td><td>83</td></tr><tr><td colspan="2">Race</td></tr><tr><td> White</td><td>80</td></tr><tr><td> American Indian/Alaska Native</td><td>20</td></tr><tr><td colspan="2">Languages</td></tr><tr><td> Spanish (monolingual)</td><td>33</td></tr><tr><td> Spanish and English (bilingual)</td><td>33</td></tr><tr><td> English (monolingual)</td><td>33</td></tr><tr><td colspan="2">Education</td></tr><tr><td> Less than high school</td><td>20</td></tr><tr><td> High school diploma</td><td>40</td></tr><tr><td> Technical/vocational school</td><td>40</td></tr><tr><td colspan="2">Annual household income</td></tr><tr><td> <$10,000</td><td>20</td></tr><tr><td> $10,000–<$30,000</td><td>40</td></tr><tr><td> $30,000–<$50,000</td><td>40</td></tr><tr><td colspan="2">Household poverty level (HPL)</td></tr><tr><td> ≤100%</td><td>60</td></tr><tr><td> 101%–150%</td><td>40</td></tr><tr><td>Child's insurance</td><td /></tr><tr><td> Medicaid/Medicaid Choice</td><td>86</td></tr><tr><td> Financial Assistance Program</td><td>14</td></tr></tbody></table> </ephtml> </p> <p>2 <emph>Note</emph>. Missing Data: Ethnicity (<emph>n</emph> = 2), Race (<emph>n</emph> = 2), Language (<emph>n</emph> = 1), Education (<emph>n</emph> = 2), Income (<emph>n</emph> = 2), HPL (<emph>n</emph> = 2).</p> <p>Transcripts, recordings, and field notes were reviewed and four themes relevant to AFN acceptability and feasibility were identified: (<reflink idref="bib1" id="ref65">1</reflink>) "It's all in a name: the risk of engagement"; (<reflink idref="bib2" id="ref66">2</reflink>) "Community partnerships require authentic trust"; (<reflink idref="bib3" id="ref67">3</reflink>) "System interactions and interrelationships"; and (<reflink idref="bib4" id="ref68">4</reflink>) "What is an AFN, clinical or family navigation role?"</p> <hd id="AN0191101965-12">It's All in a Name: The Risk of Engagement</hd> <p>This theme related to the policy context in which services are delivered, how services are named and community perceptions of being visible during immigration reform. The SaLSA pragmatic trial enrolled participants from February 2015 until February 2018 during which families expressed heightened awareness and hesitancy engaging with services that they perceived to be potentially risky. Both participants who received AFN services and focus group members reported hesitancy in engaging in public services secondary to misconceptions regarding the name of the community nonprofit organization that provides evaluation and EI services for children with developmental delays and disabilities. A high-contact participant noted, "there are a lot of families out there that need some support but a lot of them are scared because of language or status... Like their immigration status." This was reinforced by a focus group member: "I know many people and even I have thought about giving up the services that my children already have because they're called public charges [and are] afraid to look for services." The lead navigator reported experiences with families who had misconceptions based on hearing "human services" as being immigration services rather than services for families:</p> <p>So, [the family] doesn't feel safe calling back... They would feel like, oh, my gosh, somebody reporting us... And the mom would say to me, "They say early intervention, and somebody from [EI organization] was calling. And the only thing they hear is "Human Services," that was the recording. I am not calling back.</p> <p>The navigator also elaborated that she had to counsel based on the implications of risk because of questions regarding "what does human service mean? Immigration, or deportation? [So] they scare, so many things [from] those two words."</p> <hd id="AN0191101965-13">Community Partnerships Require Authentic Trust</hd> <p>The second theme describes how the program connects with families and the stigma associated with autism and disability within Hispanic/Latino culture. Families receiving AFN highlighted the significance of being able to work with a navigator who, as described by a high-contact participant, "understands me, everything I tell her, what I need, and what I'm going through" and were able to develop trust that this person was there to assist their family. This high-contact participant went on to say, "Yes, because I felt, like, I had no help, I had nothing for my child, because of the problem he has and, well, no one understood me. I think only [the navigator]." Many participants, regardless of the frequency of AFN contacts, noted the importance of primary language congruence: "she made us feel comfortable, again, because of the language, spoke both Spanish and English but that's good too, to communicate in both languages." A monolingual low-contact participant mentioned: "Because I don't speak English. So, she does speak Spanish, and she also had a lot of information completely unknown to me." A focus group member expressed,</p> <p>In my case, it does matter if the person you are working with has a connection with someone with disability,... There is more sensitivity. So, once you acquire that trust with the person that you identify with, you start to trust... If you have a good result, you will share the information.</p> <p>Strong partnerships among navigation teams with lived experience were thus viewed as a way families would continue to engage with services and recommend resources or services to other families.</p> <p>Providers and staff expressed the nuances in navigating what one EI staff member called "a culture barrier sometimes when it comes to these families." A health care provider reflected that it is</p> <p>critical [to address]. I mean, you have a population that doesn't have the benefits of being more educated and more aware of resources that are out there so they're depending on us to provide that information for them and we need to be able to do that.</p> <p>EI providers and staff additionally mentioned, "I think that that also would help [relationships], understanding the culture part" and their experiences "seeing how warm [navigators] were with the families. They were bilingual so they could talk with the family without the interpreter and still provide some emotional support and explaining things to them in addition to what we talked about." These quotes highlight the importance of cultural competency and linguistic congruence to develop and strengthen relationships among families and the care team.</p> <p>Participating families and focus group members additionally described challenges in accepting the diagnosis of their child having ASD and initial denial. This at times was attributed to cultural differences; focus group members expressed that there is hesitancy to accept the diagnosis, "shame with what the families will say," especially from men: "The dads just can't accept [the diagnosis]." Other focus group members went on to agree; one said, "just truly denying the diagnosis for years and years. The 'machismo.'" Another focus group member said, "In our culture, the men are, I work, you take charge, you take care of this. So, in the Mexican culture specific to these moms, the dads think they are perfect and it's the moms' fault." At other times, participating families expressed that these challenges can be assuaged by identifying a person of trust, such as a navigator or provider who has established trust and the ability to meet families where they are while still appropriately advocating for services that the family and child should seek.</p> <hd id="AN0191101965-14">System Interactions and Interrelationships</hd> <p>This explores how complex systems helped and hindered program participation by families, clinical and service providers, and other clinicians. Many families with both high and low AFN contact expressed feelings of being overwhelmed by medical appointments, having a young child, and a feeling like "I had no idea what it was" in regard to a potential diagnosis of ASD. Parents were unsure about what resources exist for children who may have ASD and "don't have a clue where to start or what to do." Families participating in AFN and focus group members described being discouraged by interacting with the health care system and "losing courage" to keep pushing through, and that the system itself is difficult to work with. In addition, some participating families described being unsure at first how they were supposed to interact with the navigator, "because I don't know if I have to call her or her to me," which at times led to decreased use, "like, I've only talked to her about three times." Participating families, whether receiving AFN services or not, expressed that if their doctor had recommended the AFN program, they would be more likely to participate. The family that had declined AFN services reflected "because it was not referred by her [daughter's] doctor, so [she] wasn't comfortable with it" as a main reason limiting her participation in AFN.</p> <p>Providers and staff expressed common challenges families had reported or demonstrated to them: as one health care provider noted, "Most of our patients have barriers to care like transportation, they don't know what insurance they have, what their insurance covers, they don't understand what autism interventions are, they are not sure where to go next." Both health care and EI providers and staff acknowledged how these systemic challenges affected families' understanding and ability to proceed with next steps in the diagnostic process for ASD. Some professionals at the EI organization expressed challenges of families "not being spoken to or getting explained why they're being sent to us" and in not understanding the purpose of a referral and the role of the organization. They reported downstream effects, as "it makes my job harder because sometimes I can schedule the appointment, but guess what? Sometimes these parents might not even show up to the evaluation." Professionals at this organization identified that having a navigator assisted in filling this gap by being able to investigate why a family could not attend an appointment or to evaluate other gaps between providers and families.</p> <hd id="AN0191101965-15">What Is an Autism Family Navigator: Family Navigation or Clinical Role?</hd> <p>The agile, individualized approach to the navigator role and responsibilities helped highlight the need for someone who has lived the experience with autism and who can guide the family in a culturally appropriate manner. Family participants spoke to the ability of the navigator to "give the resources that I needed," make connections to resources for families and "she was consistent and whenever something got denied, I believe—not even denied, if it took a while, she would put in a request." One focus group member noted having a consistent person "that knows the community" to turn to with questions as being beneficial during the diagnostic process. Another focus group member expressed desire for a navigator to reach families in the context of their homes and the effectiveness of their relationship with their navigator based on that ability.</p> <p>Providers and staff wanted to have more understanding about the background of the participating navigator, for example, confidence about their understanding of local resources. One EI provider noted,</p> <p>I just don't know their training and background with developmental disabilities. And since I'm the clinician, I just want to make sure parents are getting accurate information, and so just if they didn't have the same background or training, I just want to make sure that they're connecting the family with appropriate resources and that they're giving them good information.</p> <p>Health care providers wanted to better understand the navigator's ability to navigate for a family based on their particular insurance coverage, and that families received appropriate and accurate information that was consistent with that provided by the health care team. This theme may be reflected in one navigator's experience attending an EI appointment with a family: "I remember [the EI organization team] was not happy... that I was there [for the evaluation]." The navigator and the family had to clarify their role to the care team: "No, no, no, the provider, the early intervention team, they was not kind of happy. I remember one team, oh, my gosh,... and them asking the family... So, the family say, 'Yeah, I invited her.'"</p> <hd id="AN0191101965-16">Discussion</hd> <p>Given evidence supporting AFN as an efficacious intervention for families with young children who screen positive for or are diagnosed with autism, this study adds important qualitative perspectives to consider when adapting AFN services on a larger scale, especially regarding urban underserved, largely Hispanic populations like the one represented in this study. These results support and build on prior studies that reported perspectives of navigators and families of children with ASD who received navigation, and family, contextual, and environmental factors relevant to AFN implementation ([<reflink idref="bib8" id="ref69">8</reflink>]; [<reflink idref="bib23" id="ref70">23</reflink>]). This study importantly adds perceptions of AFN services from both health care and human services providers and staff as well as from families whose children screened positive but were not found to have ASD and from those who declined navigation services.</p> <p>Our results document the importance of cultural context in planning and implementing AFN in largely Hispanic, Spanish-speaking populations. Families reported they were able to develop a trusting relationship with the navigator because of language and cultural congruency between themselves and the navigator, consistent with findings from [<reflink idref="bib23" id="ref71">23</reflink>]. Our study identified similar perspectives from providers and staff, who expressed the need for cultural competency to support relationships between families and the care team. Stigma associated with ASD was identified as a key aspect of this cultural context. While initial denial, as a key stage of grieving, often occurs among families after receiving a diagnosis of ASD in their child ([<reflink idref="bib12" id="ref72">12</reflink>]), study participants identified additional challenges accepting the diagnosis due to cultural differences, particularly related to the concept of machismo. As also endorsed by participants in Levinson et al., ensuring that AFN interventions include efforts to destigmatize the ASD diagnosis could enhance the quality of AFN support. Establishing trust and considering unique cultural considerations among families can serve as an impactful facilitator that can be leveraged within communities to improve utilization of AFN services.</p> <p>The theme "System interactions and interrelationships" demonstrates the unique need and role AFN services fill for families referred for diagnostic evaluation for ASD. Challenges navigating the health care system place a large barrier on families, as similarly reported previously by families and navigators ([<reflink idref="bib8" id="ref73">8</reflink>]). In our study, providers and staff also recognized challenges that affect families' ability to pursue diagnosis and services for their children, such as understanding of the reason for and purpose of referral, low literacy, and logistical barriers. Both families and providers/staff perceived that AFN services helped mitigate these challenges. At times, however, AFN services added to perceived system interactions and difficulties in navigating the system. This may reflect uncertainty about how they should interact with the navigator and their providers. One family declining AFN services expressed that they would have been more likely to accept it had their own doctor recommended it. A "warm hand-off" with a real-time introduction for their own doctor, as suggested by [<reflink idref="bib23" id="ref74">23</reflink>], or embedding the navigator within the clinic or practice, might improve acceptance. The potential for AFN engagement to add to perceived burden may also reflect that families with more resources and knowledge find AFN less helpful (Crossman et al.). We similarly found that some families reported not requiring frequent check-ins, demonstrating the need to tailor AFN service intensity and timing based on the families' prior experiences, resources, and level of social and familial support.</p> <p>How well a navigator can respond to families' practical and emotional needs was identified as key to the AFN program's feasibility and acceptability. As in [<reflink idref="bib23" id="ref75">23</reflink>], some participating families highlighted that navigators should have lived experience with ASD. However, at least as important to both participating families and providers was the navigator's understanding of autism and the care system, and ability to connect families to local resources. Providers wanted assurance that navigators had appropriate knowledge to be effective to feel comfortable referring their patients to receive AFN. Thus, AFN programs can be strengthened through standardization and expansion of navigator training and education. Our findings suggest some confusion about the navigator role. Ensuring that providers within the care system fully understand the navigator's clinical and educational experience and potential role in supporting families, is likely to enhance providers' acceptance and endorsement of the AFN program. Standardizing expectations that navigators attend certain appointments may both assist families and lead to more consistent relationships among navigators and providers.</p> <p>Families with undocumented immigration status may hesitate to accept AFN services because of perceived risks of being reported to immigration authorities if they engaged with these services. While this may have reflected in part the existing political context at the time of trial implementation, prior studies have similarly found that undocumented immigrants may seek to limit risks of exposure and deportation by avoiding contacts with organizations, even those offering needed heath care and social services ([<reflink idref="bib16" id="ref76">16</reflink>]; [<reflink idref="bib25" id="ref77">25</reflink>]; [<reflink idref="bib28" id="ref78">28</reflink>]). This is of particular concern because families without documentation may have even greater need for AFN guidance and support, because they may be less likely to know how to access therapy or resources ([<reflink idref="bib23" id="ref79">23</reflink>]). AFN programs may need to be specifically tailored for this population, for example, involving organizations trusted by this community (e.g., those focusing on immigrant resources or rights) to assist with outreach and engagement in AFN.</p> <p>There are several limitations to this study. Qualitative data collection began more than a year after the SaLSA trial started, and some participating KI families had completed AFN services months before their interview. This may have influenced their recollection of experiences of AFN services and nuances regarding feasibility and acceptability. This trial took place within a safety-net hospital setting, which may not transfer directly to other contexts and raises important questions for future research. We additionally were limited to participants who volunteered to be interviewed and may have missed perspectives from those who were not willing to participate. Only children who attended a well child visit within the community health system were eligible to be randomized to AFN. Children from lower-income or less-educated households or who have no insurance or public insurance are more likely to miss well child visits ([<reflink idref="bib41" id="ref80">41</reflink>]). Perspectives of families of children who fail to attend well visits may differ from those of families whose children do attend well visits. This limitation was partly ameliorated by the community focus group of mothers with similar ethnic and socioeconomic backgrounds whose children had autism but were not required to have attended a well visit. Strengths of this study include perspectives from varied stakeholder groups including family, navigator, clinician, and human services provider and staff perspectives. This helped contextualize the responses received in this study. In addition, this study included perspectives of families whose children screened positive for ASD but were found to have other developmental disorders as well as those diagnosed with ASD, and of families who used AFN services to varying degrees or declined them altogether, to help adequately understand potential barriers among the range of families who might be targeted for AFN programs.</p> <hd id="AN0191101965-17">Conclusion</hd> <p>Autism family navigation services demonstrate substantial potential to decrease barriers to families receiving a timely diagnosis of ASD, particularly among low-income and underrepresented minoritized groups. This study's findings can potentially be applied to future AFN programs to help enhance family participation and experiences with navigation services, as well as increase provider and staff support for implementation of AFN programs in their institutions. Our results reinforce the need for AFN content to include individualized services, emotional support, and care coordination. To be both efficient and effective, AFN programs should assess each families' specific needs and resources and calibrate the services offered accordingly, to provide adequate support where needed while avoiding burdening families requiring less assistance with unnecessary contacts. Navigators can offer emotional support to help families address feelings of being overwhelmed and discouraged, grieving after receiving the ASD diagnosis, and experiencing the stigmatization of an ASD diagnosis. Navigators can also play a key role helping families to navigate through and around the complex systems with which families of children with ASD must interact, including medical and other specialty care systems as well as educational systems. The value of this type of care coordination was recognized by our own program partners, such that after the trial ended, the EI organization created an EI engagement specialist position in their own organization and obtained external funding to place an early childhood family navigator in the community health care system to support referrals for developmental evaluation and services.</p> <p>Our results also suggest several ways to improve AFN program delivery. While employing navigators whose language and culture is congruent with the families they serve, and who have lived experience of ASD, may facilitate the establishment of a trusting relationship, authentic trust can also be supported by appropriate training to ensure that navigators understand and respect the values, attitudes, beliefs, and mores of the culture in which they operate, and that they consider these factors when implementing AFN. Involving those with whom families already have a trusting relationship, for example, obtaining referrals from the child's own health care provider, embedding the navigator within the clinical setting, or conducting outreach to families with the assistance and advice of established community partners, is likely to support AFN recruitment and engagement. Such involvement is more likely to occur if the trusted providers and community partners fully understand the navigator's abilities, experience, and potential role in supporting families, and if they perceive the navigators as knowledgeable and effective. This in turn requires both extensive, standardized navigator training and education to ensure competence, and program outreach to providers and partners to educate them about what AFN can offer their patients and their community. These recommendations may help tailor and inform sustainable practices for AFN as an intervention among communities in need.</p> <hd id="AN0191101965-18">Supplemental Material</hd> <p>Graph: Supplemental material, sj-docx-1-foa-10.1177_10883576251396515 for Parent and Provider Perspectives on Family Navigation for Early Identification of Children With Autism Spectrum Disorder by Christina Cheung, Jacqueline Jones, Kristina Hightshoe, Jeanette Córdova, Yurico Gutiérrez, Jodi K. Dooling-Litfin, Margaret M. 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For more information, please visit HRSA.gov.</bibtext> </blist> <blist> <bibtext> Christina Cheung</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0009-0004-5234-2042 Margaret M. Tomcho</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0002-4474-0292 Steven A. Rosenberg</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0002-4344-3608 Carolyn DiGuiseppi</bibtext> </blist> <blist> <bibtext>Graph https://orcid.org/0000-0002-6440-7817</bibtext> </blist> <blist> <bibtext> Supplemental material for this article is available at https://doi.org/10.1177/10883576251396515.</bibtext> </blist> </ref> <aug> <p>By Christina Cheung; Jacqueline Jones; Kristina Hightshoe; Jeanette Córdova; Yurico Gutiérrez; Jodi K. Dooling-Litfin; Margaret M. Tomcho; Silvia Gutiérrez-Raghunath; Cordelia Robinson Rosenberg; Steven A. Rosenberg and Carolyn DiGuiseppi</p> <p>Reported by Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib27" firstref="ref6"></nolink> <nolink nlid="nl2" bibid="bib39" firstref="ref7"></nolink> <nolink nlid="nl3" bibid="bib44" firstref="ref8"></nolink> <nolink nlid="nl4" bibid="bib26" firstref="ref9"></nolink> <nolink nlid="nl5" bibid="bib40" firstref="ref10"></nolink> <nolink nlid="nl6" bibid="bib42" firstref="ref11"></nolink> <nolink nlid="nl7" bibid="bib17" firstref="ref12"></nolink> <nolink nlid="nl8" bibid="bib29" firstref="ref13"></nolink> <nolink nlid="nl9" bibid="bib30" firstref="ref14"></nolink> <nolink nlid="nl10" bibid="bib31" firstref="ref16"></nolink> <nolink nlid="nl11" bibid="bib33" firstref="ref17"></nolink> <nolink nlid="nl12" bibid="bib43" firstref="ref18"></nolink> <nolink nlid="nl13" bibid="bib24" firstref="ref19"></nolink> <nolink nlid="nl14" bibid="bib35" firstref="ref20"></nolink> <nolink nlid="nl15" bibid="bib13" firstref="ref21"></nolink> <nolink nlid="nl16" bibid="bib14" firstref="ref22"></nolink> <nolink nlid="nl17" bibid="bib37" firstref="ref24"></nolink> <nolink nlid="nl18" bibid="bib21" firstref="ref25"></nolink> <nolink nlid="nl19" bibid="bib18" firstref="ref27"></nolink> <nolink nlid="nl20" bibid="bib10" firstref="ref30"></nolink> <nolink nlid="nl21" bibid="bib11" firstref="ref31"></nolink> <nolink nlid="nl22" bibid="bib20" firstref="ref40"></nolink> <nolink nlid="nl23" bibid="bib23" firstref="ref45"></nolink> <nolink nlid="nl24" bibid="bib15" firstref="ref50"></nolink> <nolink nlid="nl25" bibid="bib32" firstref="ref51"></nolink> <nolink nlid="nl26" bibid="bib36" firstref="ref52"></nolink> <nolink nlid="nl27" bibid="bib19" firstref="ref53"></nolink> <nolink nlid="nl28" bibid="bib34" firstref="ref59"></nolink> <nolink nlid="nl29" bibid="bib22" firstref="ref62"></nolink> <nolink nlid="nl30" bibid="bib38" firstref="ref63"></nolink> <nolink nlid="nl31" bibid="bib12" firstref="ref72"></nolink> <nolink nlid="nl32" bibid="bib16" firstref="ref76"></nolink> <nolink nlid="nl33" bibid="bib25" firstref="ref77"></nolink> <nolink nlid="nl34" bibid="bib28" firstref="ref78"></nolink> <nolink nlid="nl35" bibid="bib41" firstref="ref80"></nolink>
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  Data: Parent and Provider Perspectives on Family Navigation for Early Identification of Children with Autism Spectrum Disorder
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  Data: <searchLink fieldCode="AR" term="%22Christina+Cheung%22">Christina Cheung</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0004-5234-2042">0009-0004-5234-2042</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jacqueline+Jones%22">Jacqueline Jones</searchLink><br /><searchLink fieldCode="AR" term="%22Kristina+Hightshoe%22">Kristina Hightshoe</searchLink><br /><searchLink fieldCode="AR" term="%22Jeanette+Córdova%22">Jeanette Córdova</searchLink><br /><searchLink fieldCode="AR" term="%22Yurico+Gutiérrez%22">Yurico Gutiérrez</searchLink><br /><searchLink fieldCode="AR" term="%22Jodi+K%2E+Dooling-Litfin%22">Jodi K. Dooling-Litfin</searchLink><br /><searchLink fieldCode="AR" term="%22Margaret+M%2E+Tomcho%22">Margaret M. Tomcho</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-4474-0292">0000-0002-4474-0292</externalLink>)<br /><searchLink fieldCode="AR" term="%22Silvia+Gutiérrez-Raghunath%22">Silvia Gutiérrez-Raghunath</searchLink><br /><searchLink fieldCode="AR" term="%22Cordelia+Robinson+Rosenberg%22">Cordelia Robinson Rosenberg</searchLink><br /><searchLink fieldCode="AR" term="%22Steven+A%2E+Rosenberg%22">Steven A. Rosenberg</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-4344-3608">0000-0002-4344-3608</externalLink>)<br /><searchLink fieldCode="AR" term="%22Carolyn+DiGuiseppi%22">Carolyn DiGuiseppi</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-6440-7817">0000-0002-6440-7817</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22Focus+on+Autism+and+Other+Developmental+Disabilities%22"><i>Focus on Autism and Other Developmental Disabilities</i></searchLink>. 2026 41(1):42-53.
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  Data: SAGE Publications and Hammill Institute on Disabilities. 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
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  Data: Y
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  Data: 12
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  Data: 2026
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  Data: Health Resources and Services Administration (HRSA) (DHHS)
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  Data: R40MC27702
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  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Disability+Identification%22">Disability Identification</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Programs%22">Family Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Urban+Areas%22">Urban Areas</searchLink><br /><searchLink fieldCode="DE" term="%22Services%22">Services</searchLink><br /><searchLink fieldCode="DE" term="%22Parents%22">Parents</searchLink><br /><searchLink fieldCode="DE" term="%22Allied+Health+Personnel%22">Allied Health Personnel</searchLink><br /><searchLink fieldCode="DE" term="%22Teachers%22">Teachers</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Effectiveness%22">Program Effectiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Feasibility+Studies%22">Feasibility Studies</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Hispanic+Americans%22">Hispanic Americans</searchLink><br /><searchLink fieldCode="DE" term="%22Minority+Groups%22">Minority Groups</searchLink><br /><searchLink fieldCode="DE" term="%22English+%28Second+Language%29%22">English (Second Language)</searchLink>
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  Label: Geographic Terms
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  Data: <searchLink fieldCode="DE" term="%22Colorado%22">Colorado</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/10883576251396515
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1088-3576<br />1538-4829
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Early intervention (EI) can improve developmental outcomes among children with autism spectrum disorder (ASD), but underdiagnosis and undertreatment are common among low-income families and children of racial/ethnic minorities. The Screening and Linkage to Services for Autism (SaLSA) trial (ClinicalTrials.gov Identifier: NCT02374541) demonstrated that autism family navigation (AFN) improved the likelihood that young children at risk for ASD completed a diagnostic evaluation. In a qualitative descriptive U.S. study, we recruited parent participants, health care and EI providers and staff, and project personnel from the SaLSA trial to participate in semi-structured interviews on acceptability and feasibility of AFN services for families seen in urban safety-net clinical settings (i.e., where care is provided regardless of ability to pay). Iterative theme analysis was performed. A community focus group was conducted for triangulation to improve validity. Results demonstrated four main themes: (1) "It's all in a name: the risk of engagement"; (2) "Community partnerships require authentic trust"; (3) "System interactions and interrelationships"; and (4) "What is an autism family navigator: family navigation or clinical role?" This study adds perspectives of interested parties of AFN within an urban underserved population. Recommendations for navigation program content and delivery can inform future modifications to AFN programs in the context of the communities they serve.
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  Data: 2026
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