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The goal of this clinical trial is to learn about the journey of families after their child's diagnosis of autism and to help parents understand autism and get the right treatments for their child. This study is for parents of children just diagnosed with autism who are:
The main questions it aims to answer are:
Participants will be asked to:
Researchers will compare control and intervention groups to see if Project AFECT leads to improved parent and child outcomes.
This is a prospective clinical effectiveness study of Project AFECT, an intervention combining parent coaching and family navigation. Parents who meet inclusion criteria will be invited to participate in this study at the time of their child's autism diagnosis at Stanford Medicine Children's Health.
In addition to treatment as usual, participants in the intervention group will be connected with Project AFECT Coaches who will provide: Coaching to (1) assure parents understand diagnosis, (2) assist parents in finding accurate, current information about autism, (3) guide parents to free online autism training resources, (4) empower parents to evaluate child's intervention plan holistically, and (5) provide emotional support to reduce stress; Navigation to (1) help family access autism treatments, and (2) connect to early intervention and educational services.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Coaching Group | Experimental | Coaching Group will receive Project AFECT intervention, in addition to treatment as usual. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Autism Family Empowerment Coaching and Training Program | Behavioral | Participants in the intervention group will be connected with Project AFECT Coaches who will provide: Coaching to (1) assure parents understand diagnosis, (2) assist parents in finding accurate, current information about autism, (3) guide parents to free online autism training resources, (4) empower parents to evaluate child's intervention plan holistically, and (5) provide emotional support to reduce stress; Navigation to (1) help family access autism treatments, and (2) connect to early intervention and educational services. |
| Measure | Description | Time Frame |
|---|---|---|
| Self-Efficacy | Mean change from baseline in parental self-efficacy measured using Autism-Specific Parenting Self-Efficacy Scale (PSEaS). Overall possible scores on the scale range from 17 - 85. The higher the score, the higher the measured level of parental self-efficacy (better outcome). | From enrollment to the end of intervention at 6 months |
| Stress Level | Mean change from baseline in parental stress level measured using Parental Stress Scale (PSS). Overall possible scores on the scale range from 18 - 90. The higher the score, the higher the measured level of parental stress (worse outcome). | From enrollment to the end of intervention at 6 months |
| Measure | Description | Time Frame |
|---|---|---|
| Child's Language Development | Scores using MacArthur-Bates Communicative Development Inventory - Words and Gestures. For comparison between groups, we will be utilizing the raw scores. Overall possible raw scores range from 0 - 396. The higher the raw score, the higher the number of words understood and produced by the child (better outcome). | From enrollment to the end of intervention at 6 months |
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Inclusion Criteria:
1. Parents of children just diagnosed with autism (with or without other diagnoses) who are:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Heidi Feldman, MD, PhD | Stanford University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Gardner Packard Children's Health Center | Atherton | California | 94027 | United States | ||
| Stanford Medicine Children's Health |
After conclusion of this study and publication of the main findings, de-identified data will be placed in a public repository.
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| Access to autism treatments | Time from initial autism diagnosis to start of applied behavior analysis (ABA) therapy | From enrollment to the end of intervention at 6 months |
| Access to early intervention/special education | Time from initial autism diagnosis to assessment for early intervention/special education and development of Individualized Family Service Plan (IFSP)/Individualized Education Program (IEP) | From enrollment to the end of intervention at 6 months |
| Sunnyvale |
| California |
| 94087 |
| United States |
| ID | Term |
|---|---|
| D000067877 | Autism Spectrum Disorder |
| D001321 | Autistic Disorder |
| D002659 | Child Development Disorders, Pervasive |
| ID | Term |
|---|---|
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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