The Laurel Autism Family Project
The Laurel Research Consortium (LARC) is the operating division of Laurel Foundation, currently developing a resource of services for parents of children on the autism spectrum. One of the biggest challenges for parents of autistic children is finding resources and support, and which therapy options work best. Resources and support can vary greatly due to many factors including geographic location, age of child and cost.
The Laurel Autism Family Project (LAFP)
The Laurel Foundation created the Laurel Autism Family Project, a web application, to assist parents of autistic children in finding effective therapies and programs. The application gathers data anonymously from parents regarding their child’s behaviours, therapies, and progress and then allows parents to compare their current programs’ effectiveness with others. By comparing the progress of children with similar profiles, parents may choose to pursue therapy programs that others in similar circumstances have found helpful. The application will then connect parents with online resources to assist in their child’s ongoing development.
The LAFP project will be ongoing as information will be constantly uploaded, with initial results anticipated within 12 – 18 months. (2022)
Phase One: The Survey
LAFP will focus primarily on families in Canada, United States, Australia, New Zealand, and Europe, expanding to other countries as the project evolves. Each family will complete a survey indicating the behaviours of their child, the services and therapies they currently use and their perceived effectiveness. All information is confidential, and a secure password will be selected by each family so they can access and update their information over time.
The family stories are categorized according to:
- Child’s age
- Autistic characteristics
- Current therapies and programs
- Perceived effectiveness of therapies and programs
- Country
- Rural vs urban environment
Phase Two: Metadata Analysis
Using metadata analysis , the computer program will sort the information provided to identify and cluster children of the same age with the same characteristics into groups, and then compare their therapies and perceived outcomes from ineffective to successful. The program is not an evaluation of individual therapies, but the perceived effectiveness of the program for each individual child.
The ASD definitions, types of services and outcomes will be continuously updated by an International Committee of ASD experts chosen by leading Autism-advocacy organizations such as Autism Speaks, National Autistic Society in the UK, Autism Europe, etc.
Phase 3: Sharing
A team of international autism experts including university professors, doctors and researchers will verify the therapy program information to ensure it is ethical, viable and sustainable before releasing results. Once the best practices are identified for each cluster of ASD characteristics, the information will be shared with families to see which therapies and services have success for the specific needs according to the age and ASD characteristics of the child. This ensures that all families, whether living in an isolated rural community or in a busy urban centre can identify the most effective therapies for their child’s particular needs. Anonymity of the family and child are always respected, only outcomes of therapies according to age and behaviours are clustered and shared.
Phase 4: Implementation
The ultimate goal of the LAFP project is to build a free resource of therapies deemed helpful by parents , and to support autistic persons to enjoy fulfilled lives.
The LAFP survey will be made available through the Laurel Foundation website and other social media platforms.