Mind the Gap (AIR-B3)

Summary

There has been a lack of research on the unique needs of families with autism in the African-American and Latino communities. The process of screening, evaluation and treatment for children with autism can be long and arduous, especially in these communities. This often means that the best interventions for children with autism are not reaching minority communities. For many families, the complexity of the services system leads to a long wait after the initial diagnosis before accessing intervention. This means that the children have delayed access to treatment. Mind the Gap is a study that seeks to provide immediate and culturally appropriate support for families who have just received diagnosis but have yet to receive treatment. This support will be provided in families' native languages and, through the use of phone and video sessions, can accommodate busy schedules. Mind the Gap participants will be randomized to receive one of two conditions, which are 1.Resources only (online training modules and paper or on line resource lists, but no peer coaching) 2. Peer coaching (will receive all online training access). The peer coaches will be recruited from local parent support agencies. They will not be professionals in the field of ASD, but they will be trained by the research group on how to access the online tools and how to work whith families. They will contact the participants via phone or video conference on a weekly basis and an in- person visit per month for 3 months. Peer coaches will have a monthly call with participants for an additional nine months.We hope that this study will help the African American and Latino communities receive services sooner than currently reported. We also hope that in the future, parent organizations will use these tools to help families that have recently received an ASD diagnosis will us navigate the complex system of attaining services.

Conditions

• Autism Spectrum Disorder

Interventions

BEHAVIORAL

Access to services via peer coaching

This intervention will allow for half of the participants, randomly selected, to get help navigating the system of acquiring services for their child. These participants will be assisted by a coach who are also parents of a child with autism and have already been through the process.

Sponsors & Collaborators

• University of Rochester

  collaborator OTHER

• University of Pennsylvania

  collaborator OTHER

• University of California, Davis

  collaborator OTHER

• Drexel University

  collaborator OTHER

• Health Resources and Services Administration (HRSA)

  lead FED

Study Design

Allocation

RANDOMIZED

Purpose

TREATMENT

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

2 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2018-04-01

Primary Completion

2020-08-01

Completion

2020-08-31

Countries

• United States

Study Locations