Foreword
an agency or an extended family member or friend. The critical nature of training for respite providers cannot be overemphasized. Services provided by those who may be well-intentioned but not well-trained can undo the potential benefits of the respite for both the family and the individual. In this guide, we will highlight important characteristics of autism that must be understood as well as best practices for addressing them. Research clearly suggests that respite is a lifeline for families, so it is vitally important that it provide the intended effects. We sincerely hope this guide will help families continually improve the potential benefits of their respite experiences by providing a system for educating potential providers about autism and their unique loved one. Please contact us at 800.4.AUTISM or information@autismnj.org for any autism concerns pertaining to respite, early intervention, special education, transition, adult services, insurance, and more.
Many individuals with autism spectrum disorder (ASD) require significant levels of support in home, school, and community settings. Due to deficits in social communication and interaction, compounded by restricted, repetitive patterns of behavior, many individuals need direct supervision throughout their lives. Individuals can make great progress when provided with specialized intervention, yet there are many who will not be able to keep themselves safe so need constant supervision, even as adults. This duty usually falls to already exhausted families who experience the stresses of intense caregiving demands and restricted daily activities. They may be unable to accept career opportunities, attend religious services, participate in activities with other family members, or enjoy community events due to special childcare issues. Parents also report a lack of time alone to relax and the virtual impossibility of family vacations. Not surprisingly, they are at risk of both physical distress such as poor sleep and psychological distress exacerbated by extreme stress, anxiety, fear, and guilt. Marital difficulties, fears about safety, and financial worries over autism intervention are just a few of the specific concerns frequently shared. These potentially damaging effects on both individual family members and the family unit point to the need to develop respite services geared specifically for individuals with autism and their caregivers. As these challenges often continue into adulthood, the information discussed in this guide pertains to individuals with ASD of all ages . Respite services have improved over the years, but there are still far too few services available. Parents report the need for greater quality, quantity, variety, and flexibility in how these services are provided. They also request autism- specific respite so that providers are prepared to support the complex and unique needs of individuals with ASD. According to research, one of the most valued options by parents is formal in-home care. This guide is designed to prepare the parents and the provider for such care, whether the provider is a professional from
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