Families of children with autism spectrum disorder (ASD) may experience stress before, during, and after a diagnosis. Read on to learn more from the American Academy of Pediatrics about support available for families of children with ASD.

Family Support

Parents often consider family support to be a vital part of an overall intervention plan. Many families feel that they do not get enough help from the professionals involved with their children to learn about the practical aspects of how to obtain services for their children and family members.

Family-centered planning is essential to address the unique needs of each family member and is part of the pediatric medical home. Studies show that parents with more support from other parents and community organizations have less stress. Families of children with ASD can assist each other with finding help in their communities.

As soon as a diagnosis of ASD is made, families should be referred to parent support groups in their communities. Family group meetings provide parents with a chance to meet other families with children with ASD and may be a major source of information and comfort. At first, many families may prefer not to share their feelings with others. Support groups give information about resources and provide excellent opportunities for networking.

There are many different types of support groups, including

• National organizations with local chapters. Some families help other children with ASD and their families by getting involved with organizations such as the Autism Society of America.
• National parent-run organizations such as Autism Speaks and the Autism Science Foundation. Families can help advance efforts for research about ASD through these organizations and obtain information about local resources.
• Local organizations such as local and state parent groups.
• Special interest support groups such as families who have specific treatment interests (for example, ABA or dietary treatments), siblings of children with disabilities, and teens and adults with ASD. Members of these support groups informally help parents and people with ASD as they were once helped by others.
• Online support groups. To successfully address the stressors related to the behaviors of ASD and advocate for services and related issues, parents of children with ASD need to support each other. All adult caregivers should work together to address behavioral concerns and support one another.

Similarly, extended family members, such as grandparents, may play an important role in supporting the decisions and behavioral limit setting of parents, as well as being able to help out with the care of children with ASD.

Respite Services

When extended family or friends are not available to care for a child with ASD, respite services (child care provided by trained individuals) can help parents by allowing them to attend to other family needs. Although agencies that specialize in respite services for children with disabilities are usually available in most large cities, they may not be in smaller communities or rural areas.

If parents need help paying for respite care, support may be available through state agencies serving people with intellectual disabilities, ASD, or other mental disorders. Funding may be available through family support services (FSS) programs, and those eligible for Medicaid (often through a home and community based services waiver program) may also be eligible for respite care. The Medicaid Home and Community-Based Services Waiver Program might simply be referred to as a “waiver” program, because it allows states to waive certain Medicaid requirements to provide services to people who would otherwise be in an institution, a nursing home, or a hospital to get care in their community.

Waivers vary from state to state, with different eligibility criteria, services, and amounts of funding. Waivers often have long waiting lists, so it is important, as soon as a diagnosis of ASD is made, to learn what is available in your state, who is eligible, and how and when to apply. If it is outlined in the waiver plan, the child may be eligible for respite and recreational activities such as summer camps. Depending on family income or other state eligibility requirements, the child might also be eligible for Medicaid coverage, independent of a waiver.

Visit HealthyChildren.org for more information.

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