Because of the additional care required by a child with autism, families identify respite care as a basic need, with the need increasing as the child gets older. Families who report less stress usually are the recipients of formal support services, such as respite care.
Autism is a lifelong developmental disability, in which individuals may experience difficulty in language/communication, social development, and behavioral responses to their environment.
Autism occurs along a spectrum from mild to severe. Autism in its mildest form may resemble a learning disability. However, the communication and socialization difficulties of autism still result in a need for individualized planning. Of persons with autism, only 2-3% fall at the very severe end of the spectrum, which is often accompanied by severe behavior difficulties, such as intense self-injury and/or aggression. Autism may also be associated with other disabilities due to developmental delays.
Autism is a low incidence disability with a prevalence rate of about 4-5 in 10,000 births. Although there is no known etiology, various theories include a genetic, biochemical, and/or structural component(s). Autism occurs across all socioeconomic levels, races, and regions of the world.
Families who have a child with autism often experience ongoing stress. Aspects of the family's life that may be impacted by a family member with autism include family recreation, finances, social relations with friends, relatives, spouses and neighbors, and the emotional, physical, and mental well-being of parents and siblings. Because of the additional care required by a child with autism, families identify respite care as a basic need, with the need increasing as the child gets older. Families who report less stress usually are the recipients of formal support services, such as respite care. Respite care for families who have a child with autism helps maintain family stability and may provide opportunities for the child to participate in special activities.
All children who are autistic do not display the same characteristics. The following characteristics are among the most common:
Impairment in Socialization
Language is not used in a communicative function, instead there may be immediate or delayed echolalia (i.e., what is said to the child is mechanically repeated); perseveration (i.e., the repeating of phrases of speech over and over); pronominal reversal (i.e., The pronouns "I" and "you" are reversed, so that the child may say, "You want a cookie," when s/he desires a cookie)
Abnormal Responses to the Environment:
Inconsistent Sensory Responses:
Program Considerations - Provider Training:
Providers who are working with children with autism should be trained about the characteristics of autism. Because of these unique characteristics, children with autism typically require specialized therapeutic and educational services. Respite care providers should be well trained in the basic principles of applied behavior analysis. Training should also include information on communication, behavior management, developmentally appropriate instructional strategies, social skills and incidental teaching.
1. Respite care providers should meet with each family before beginning the provision of child care to discuss the child's routines and established patterns. This helps ensure consistency of care for the child and develops a sense of trust between the family, child, and provider. The need for predictability, structure and routine is an important element when providing respite care for children with autism. Children with autism typically insist on sameness. When the environment is altered, they often become anxious. Respite programs should:
Establish routines: set specific times for certain activities, such as snack time, naps, toileting.
Be consistent: children with autism experience difficulty in learning. Often, they are unable to generalize what they learn across people, settings, or situations. However, if persons caring for children with autism are consistent, the children do not need to spend as much time testing limits.
2. Respite programs should address the need for behavioral intervention. Behavioral approaches have proven successful in re-mediating behavioral excesses (e.g., tantrums), as well as behavioral deficits (e.g., lack of self-help skills)
Use redirection: when children with autism are engaging in inappropriate behavior, redirecting the child to another, more appropriate activity may be effective.
Use rewards: choose rewards that are meaningful to the child. The rewards must be individualized, and may require some creativity. For example, some children with autism become attached to specific objects, such as a familiar piece of clothing. Extra time with that object could be a reward.
3. Respite programs should incorporate educational components to assist in completing activities of daily living.
Use clear and simple instructions: due to the attentional problems that children with autism often experience, it is helpful to keep instructions short and concise.
Use prompts and teach in small steps: verbal instructions, gestures, or physical assistance are three prompts that are often used in working with children with autism. Use only as much prompting as is necessary for the child to complete the task, to ensure the child's is active participation. In addition to the use of prompts, it is helpful to divide the task into smaller steps. For example, if the child was being instructed to pull down his/her pants for toileting, the first step may consist of having the child only grasp the waistband; the second step could be pulling the pants over his/her hips, etc. The child is taught one step at a time, and does not move onto the next step until s/he can successfully complete the previous step.
Respite care for families of children with autism provides assistance through the provision of emergency and planned care as well as access to other family support services.
Marie Taras, Ph.D. is the Director of the Autism Support Center which provides respite care and other services to families who have children with autism in northeast Massachusetts.