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Autism Spectrum Disorders

Parental and Sibling Support

Parents and siblings of children with ASDs experience more stress and depression than those of children who are typically developing or even those who have other disabilities (Myers, Johnson, 2007.) Parents should seek guidance from physicians, governmental agencies, local resources, support groups. The following excerpt from an NIH site explains how school resources are available to parents under the Individuals with Disabilities Education Act.

For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a Federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide.

By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child's Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the child's goals. When your child's IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or her needs best. Once your child's IEP is developed, a meeting is scheduled once a year to review your child's progress and to make any alterations to reflect his or her changing needs.

If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child's home or a place familiar to the child. The services provided are written into an Individualized Family Service Plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.

Such early intervention provides specialized instruction and related services (e.g., speech therapy, physical therapy, occupational therapy), often in the context of a home visiting program (Bailey et al., 2005).

A problem arises when the government requires states to provide these services, but does not wholly reimburse the states for the services. Some school districts are reluctant to provide certain services and parents have had to go to court (Wrightslaw, 2009).

Even if the school agrees to provide services to a child with ASDs, local expertise may not be available.

The National Dissemination Center for Children with Disabilities maintains a list of resources for disabled children for each state.