Autism Parent Navigators for Autism

(APN Trial)

Not currently recruiting at 1 trial location

Overseen By Michelle Hostetler, PhD

Age: Any Age

Sex: Any

Trial Phase: Academic

Sponsor: Penn State University

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

Duration: 12 months

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial explores how Autism Parent Navigators can assist parents of young children recently diagnosed with Autism Spectrum Disorder (ASD). The goal is to determine if a structured, in-home peer support model can help parents navigate ASD services and improve family well-being. The trial includes two groups: one receiving support from peer mentors and another with a more structured Autism Parent Navigators intervention. Parents may qualify if they have a child aged 2–6 diagnosed with ASD in the last four months, and it is their first child with this diagnosis. As an unphased trial, this study provides a unique opportunity for parents to contribute to innovative support strategies that could enhance family well-being.

Do I have to stop taking my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications.

What prior data suggests that the Autism Parent Navigators model is safe for families?

Research shows that Autism Parent Navigators (APN) are designed to assist parents of young children with Autism Spectrum Disorder (ASD). This program offers peer mentoring and support at home, allowing parents to receive guidance from those who understand their situation.

Studies have found that similar family support programs are generally well-received and can enhance family functioning. The program poses no physical risks, as it emphasizes emotional and practical support rather than medical treatments.

In a previous study, programs like APN helped families access autism diagnostic evaluations more easily. This finding suggests that the program is beneficial and likely safe for participating families. Overall, the focus remains on providing helpful, non-invasive support. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Autism Parent Navigators Intervention because it offers a fresh approach to supporting families with children recently diagnosed with autism spectrum disorder (ASD). Unlike many existing treatments that focus directly on the child, this intervention is a manualized, peer support model delivered in-home, specifically designed for parents. It empowers parents by providing them with structured guidance and support from experienced peers who understand their challenges, potentially leading to better outcomes for the entire family. This personalized, parent-focused method is what sets it apart from traditional therapies that often emphasize direct interventions with the child.

What evidence suggests that Autism Parent Navigators and peer mentoring could be effective for supporting parents of children with ASD?

Research has shown that Autism Parent Navigators (APN), one of the interventions in this trial, effectively support parents of children with Autism Spectrum Disorder (ASD). Studies have found that programs like APN help more at-risk toddlers receive evaluations for autism. Parents in these programs often gain knowledge about available autism services, enabling them to better advocate for their children. Families in similar mentoring programs have also experienced benefits, such as reduced conflict and improved co-parenting.

Peer mentoring, another intervention in this trial, has also demonstrated positive results for families dealing with autism. Studies report that these programs enhance social skills, such as communication and interaction, among participants. People involved have expressed satisfaction with the support and information they receive. Overall, both APN and peer mentoring offer valuable assistance for families navigating autism services. ^{1 3 4 5 6}

Who Is on the Research Team?

Mark Feinberg, PhD

Principal Investigator

Penn State

Are You a Good Fit for This Trial?

This trial is for parents with a child aged 2-6 who has been diagnosed with Autism Spectrum Disorder (ASD) within the last four months. The child should be the first in the family to have this diagnosis, and parents must not already be in a mentoring program. Parents can be in any form of couple relationship.

Inclusion Criteria

My child has recently been diagnosed with Autism Spectrum Disorder.

My child is the first in our family diagnosed with autism.

Both parents in the household are in a committed relationship, regardless of their gender or marital status. This includes dating couples, adoptive parents, and step-parent families.

Exclusion Criteria

N/A

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants receive in-home or telephone peer support through the Autism Parent Navigators Intervention

12 months

Regular in-home or telephone visits

Follow-up

Participants are monitored for family empowerment, coparenting support, parenting consistency, and engagement with ASD-related services

12 months

What Are the Treatments Tested in This Trial?

Interventions

• Autism Parent Navigators
• Peer mentoring

Trial Overview

The study is testing an 'Autism Parent Navigators' program where peer mentors provide in-home support to help parents navigate ASD services and maintain positive family dynamics after their young child's recent ASD diagnosis.

How Is the Trial Designed?

Group I: Autism Parent Navigators Intervention Experimental Treatment 1 Intervention

Autism Parent Navigators Intervention is a manualized, in-home, peer support model for parents with a young child recently diagnosed with ASD.

Group II: Peer mentoring Active Control 1 Intervention

Peer mentors will offer an equivalent number of in-home or telephone visits for families, providing non-manualized peer support.

Who Is Running the Clinical Trial?

Penn State University

Lead Sponsor

Trials

380

Recruited

131,000+

University of South Carolina

Collaborator

Trials

233

Recruited

122,000+

Family Connections

Collaborator

Trials

1

Recruited

360+

Published Research Related to This Trial

The study identified five high-priority areas where Family Navigation for children with autism spectrum disorder could fail, including setting up community services and initial family meetings, based on expert evaluations from a mixed-methods approach involving 9 experts.

The most critical failure was found in 'setting up community-based services,' while 'attending testing appointments' was rated as the most severe potential failure, highlighting the need for targeted strategies to improve implementation.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A mixed-methods process evaluation of Family Navigation implementation for autism spectrum disorder. Broder-Fingert, S., Qin, S., Goupil, J., et al.[2020]

Family navigation (FN) services for families of children with autism spectrum disorder (ASD) showed improvements in parent activation and reduced caregiver strain among 260 parents, indicating potential efficacy in supporting families.

However, the effectiveness of FN services varied significantly based on how they were implemented, including factors like timing and type of services, suggesting that tailored approaches may be necessary for optimal outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Families' Experiences With Family Navigation Services in the Autism Treatment Network. Crossman, MK., Lindly, OJ., Chan, J., et al.[2020]

The SPANS program effectively improved the knowledge of 19 low-resourced parents about autism services, enhancing their ability to advocate for themselves and others.

The program showed high attendance and acceptability, indicating that it is a feasible and well-received approach to training navigators for families facing challenges in accessing services.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Understanding the Effectiveness and Feasibility of a Family Navigator Program for Parents of Children With Autism. Burke, MM., Cheung, WC., Kim, J.[2023]

Out of 150 studies on non-medication interventions for young autistic children, only 11 reported any adverse events, highlighting a significant gap in safety reporting in this area of research.

Among the studies that did report on participant withdrawal, 10 identified reasons that could be classified as adverse events, suggesting that researchers need to improve their methods for tracking and reporting these occurrences to better inform families and professionals.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Adverse event reporting in intervention research for young autistic children. Bottema-Beutel, K., Crowley, S., Sandbank, M., et al.[2023]

This study is testing the effectiveness of Patient Navigation (PN) as a strategy to improve access to evidence-based services for children with autism spectrum disorder (ASD), involving 250 families across multiple clinics in the northeastern U.S.

The trial aims to measure how PN affects the time it takes for families to receive a diagnosis and access recommended services compared to conventional care management, potentially revealing important insights into reducing disparities in care for vulnerable populations.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A hybrid type I randomized effectiveness-implementation trial of patient navigation to improve access to services for children with autism spectrum disorder. Broder-Fingert, S., Walls, M., Augustyn, M., et al.[2021]

Parents of children with Medicaid who received early access to an Autism Patient Navigator (APN) found the assessment significantly more useful, indicating that the APN may enhance the support for families navigating autism services.

Children with early access to the APN were more successful in scheduling and completing appointments for necessary services, suggesting that timely support can improve access to care for children diagnosed with autism spectrum disorder.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Impact of Autism Navigator on Access to Services. Roth, BM., Kralovic, S., Roizen, NJ., et al.[2019]

In a pilot study involving 40 families, the pediatric developmental passport significantly improved service contact rates for families of children with autism spectrum disorder (ASD), with 95% of the intervention group reaching out to services compared to 70% in the control group.

The passport was particularly effective in community clinics, where it helped 90% of families contact services, compared to only 40% in the control group, highlighting its potential to enhance service navigation in settings with limited specialist availability.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Increasing Access to Developmental Services for Children with Autism Spectrum Disorder: The Pediatric Developmental Passport Pilot Randomized Trial. Young, E., Aiyadurai, R., Jegathesan, T., et al.[2021]

The Family-Centered Autism Navigation semi-structured interview guide was developed to help family navigators prioritize caregiver concerns and create a shared navigation plan after a child's autism diagnosis, based on insights from 42 brief interviews and expert feedback.

This guide aims to enhance caregiver knowledge and skills in navigating services, ultimately improving access to care and supporting families in managing their child's autism spectrum disorder effectively.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Development and utility of the Family-Centered Autism Navigation interview. Pizur-Barnekow, K., Lang, AC., Barger, B.[2021]

Modifications to the family navigation (FN) strategy significantly improved recruitment for the study, with a reduction in the number of families refusing or being excluded from participation (from 19.5% to 4.8% and 43.6% to 0%, respectively).

In the second pilot RCT, families were more likely to complete the diagnostic assessment and reported greater satisfaction with clinical care, with FN showing a continued benefit over usual care in increasing the likelihood of completing assessments (hazard ratio of 2.57).

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Improving Family Navigation for Children With Autism: A Comparison of Two Pilot Randomized Controlled Trials. Feinberg, E., Kuhn, J., Eilenberg, JS., et al.[2022]

Citations

1.

prevention.psu.edu

prevention.psu.edu/projects/autism-parent-navigators-test-of-a-support-program-for-parents/

Autism Parent Navigators: Test of a Support Program for Parents

We will assess the efficacy of APN in a randomized trial with 180 families; test the mediating pathways through which APN impacts outcomes; and assess whether ...

2.

pmc.ncbi.nlm.nih.gov

pmc.ncbi.nlm.nih.gov/articles/PMC8723795/

Family navigation to increase evaluation for autism ...

In conclusion, autism family navigation implemented in an urban, safety net system is feasible and effective for increasing the number of at-risk toddlers who ...

3.

publications.aap.org

publications.aap.org/pediatrics/article/155/4/e2024067947/201180/Family-Navigation-Programs-for-Children-With

Family Navigation Programs for Children With Autism ...

This scoping review aimed to map the current evidence to describe the characteristics and synthesize the effectiveness of FN programs for children with ASD.

4.

sc.edu

sc.edu/uofsc/posts/2025/04/autism-parent-navigator-program-family-support.php

Mentoring program empowers families of children with ...

Preliminary results show participants experienced positive improvements in their coparenting relationship, such as less conflict, feeling more ...

5.

withpower.com

withpower.com/trial/autism-parent-navigators-for-autism-3d0b5

Autism Parent Navigators for Autism (APN Trial)

The SPANS program effectively improved the knowledge of 19 low-resourced parents about autism services, enhancing their ability to advocate for themselves and ...

6.

preventionservices.acf.hhs.gov

preventionservices.acf.hhs.gov/programs/756/show

Autism Parent Navigators

Autism Parent Navigators (APN) is a peer mentoring adaptation of the Family Foundations (FF) parenting education program designed for couples with a young child ...