What is Autism?
F Families want to know that anyone providing respite care has an accurate understanding of autism. The extent to which ASD affects each person varies greatly, and parents will provide those details in the separate form provided. But to make the respite experience more successful for everyone, the provider should at least know the basic facts about autism and best practices for interactions.
same sounds or phrases over and over). Intense interests in certain topics, insistence on strict routines, and unusual responses to sensory input are also common. Because of these difficulties, there is an increased likelihood of frustration and therefore challenging behaviors including aggression and self-injury. Health and safety concerns include seizures, significant eating and sleeping problems, and eloping or wandering. Individuals with ASD often require specialized educational programs to learn how to do simple daily tasks as well as more complex skills. Many on the spectrum will also have an intellectual disability (IQ lower than average) that needs to be considered. But rather than being simply several years behind in their development, they may have some skills at or above their age level in addition to significant challenges. These unique traits are part of the reason why autism-specific intervention is so important. Conversations between the family and provider (such as those prompted by the forms provided in this guide) are crucial to painting a clear picture of how the individual is affected by autism so everyone can best meet his/her needs.
Autism is a neurological disorder characterized by impairments in social communication and interaction as well as restricted, repetitive patterns of behavior. Individuals with ASD have difficulty interacting with others: building relationships, using language, regulating their own emotions, and understanding others’ points of view. Some prefer to be alone and do not seek social interaction, yet others clearly want to be social but may not understand how to do so effectively. Some develop fluent conversational speech, others speak only to get their basic needs met, and still others remain nonverbal but may communicate with pictures, sign language, or technological devices like smartphones or tablets. They may have repetitive physical mannerisms (rocking, pacing, waving) or vocalizations (using the
• • • • • Conversations between the family and provider are crucial to painting a clear picture of how the individual is affected by autism so everyone can best meet his or her needs.
F How Can Autism Affect Families? For many, autism has a significant effect on every aspect of the family. Living with and caring for an individual with autism requires extreme patience, and the experience will have its ups and downs. Initially, it can take time for families to adjust to the diagnosis, address their emotions, and become knowledgeable about autism, intervention, and advocating for their child. Parents may have had certain hopes and expectations for themselves and their children that were altered after the diagnosis. They may be unable to return to their careers as planned, their circles of friends may change, community activities may become too difficult, and finances
could become an increasing concern. Specific stressors may include excessive caregiving demands, extraordinary concerns about the child’s well-being, difficulties in obtaining services, supporting their other children, and planning for the future. Living with constant stress can have physical effects as well; recent studies have shown that mothers of individuals with autism have physiological profiles similar to combat soldiers and those with posttraumatic stress disorder. It is essential that respite providers understand the stress experienced by families so that they can assist in a compassionate manner.
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