According to estimates from the Autism and Disabilities Monitoring (ADDM) Network at the Centers for Disease Control and Prevention (CDC), about 1 in 59 children has been diagnosed with autism spectrum disorder (ASD). ASD is reported to occur in all racial, ethnic, and socioeconomic groups and is about 4 times more common among boys than among girls. Once a child is diagnosed, parents, grandparents, and other family members may begin to look for supports and resources to learn more about ASD and to assist them in raising and supporting their child with ASD. Here are a few of the supports and resources available to parents of children with ASD:
- The NIDILRR-funded Rehabilitation Research and Training Center (RRTC) on Family Support bridges aging and disability research, practice, and policies to generate new knowledge in family supports that contributes to improvements in community living, participation, health and function, and other outcomes for people with disabilities from different racial and ethnic backgrounds who are supported by family members. The research team at this RRTC is testing the efficacy of Parents Taking Action: A Parent Training Program for Latino Families of Children with Autism Spectrum Disorders (ASD), an intervention that engages parents of children with ASD in providing education and training to other parents. If you would like a reader-friendly summary of this study, take a look at our Research In Focus article, Parents Taking Action: A New Program to Empower Latinx Parents of Children with Autism Spectrum Disorders.
- The American Academy of Pediatrics provides a series of articles related to ASD for parents with children with ASD. Topics include: how pediatricians screen for ASD, how it is diagnosed, tips to keep kids with ASD safe from wandering, words of support for parents, and early identification.
- The Autism Society of America (ASA)’s Online Resource Database, a comprehensive database of ASD-related services and supports across the county, provides resources in local communities that include contact information for ASA chapters and other local supports.
- Are you or your spouse in the military and do you have a child with ASD? Operation Autism is a resource guide for military families supporting children with autism. Operation Autism provides resources and information on next steps after your child has been diagnosed with ASD, supporting your child in changing schools when you are being relocated, navigating healthcare and military insurance, a resource directory that allows you to search for local resources, and more.
- The CDC provides a list of resources for the families and services providers of children with ASD. The list includes organizations that discuss wandering, education, the life journey through ASD, disaster planning, assistive technology, screening and diagnosis, and interventions; provides guides for educators, tips for teaching children and adults with ASD; and supports researchers who are interested in investigating an aspect of ASD in finding federal organizations that provide funding opportunities. If your family includes an adult with ASD, the CDC’s list provides information on and links to organizations that support adults with ASD. The CDC also provide a set of free materials on early interventions called “Learn the Signs. Act Early”. These materials include tools for tracking milestones, children’s books, tips for when there’s a developmental concern, training resources for professionals, and more. These resources are available in English and Spanish and some are available in Chinese, Korean, Vietnamese, Portuguese, and Haitian Creole.
NARIC’s information specialists searched REHABDATA and found over 140 articles on supports for parents of children with disabilities from the NIDILRR community and elsewhere. If you would like to learn more about supports and resources for parents of children with ASD, please contact NARIC’s information specialists for more information.