Raising a child with ASD can be both challenging and extremely rewarding. While there may indeed be many struggles, from simple tasks to seemingly overwhelming obstacles, families can succeed if given the right support. The stress of raising a child with ASD requires various levels of support in order to help the family cope and move forward as they learn about ASD and navigate the complex world of supplemental services, funding programs, and the educational needs of their child. Fortunately, there are now numerous resources designed to help family members and caregivers understand and handle the emotions of raising a child with ASD, and to make those overwhelming obstacles seem a little more manageable!
Many resources are also now available for educators and providers as they learn more about the challenges families face. Understanding such challenges is crucial when helping to improve the quality of life for both the individual with ASD and his or her family. It is important that educators and service providers understand the perspective of the family and be able to support them in their journey throughout the lifespan. Resources are available to help the service provider learn about the family unit, family dynamics, and their unique needs, as well as how to best serve the individual on the spectrum while respecting and integrating the needs of the family.
The resources in this section provide valuable information for both family members and providers. While we can provide information for families to learn about ASD and solve everyday challenges, we must also ensure that providers are giving families the resources they need to succeed. It is important for everyone to know that when the family is supported and successful, the individual with ASD is supported and successful!
Commonwealth Autism Service, CAS, is a major portal for resources and information in the Commonwealth of Virginia. This non-profit organization is in partnership with the lead state agency for autism, the Department of Behavioral Health and Developmental Services (DBHDS), to provide a statewide listing of resources for Virginia. CAS has developed Autism Action Groups, provides an Autism Assessment Clinic, maintains professional development and training programs, and collaborates with various agencies within Virginia. Their website houses an extensive List of Resources by region and topic, including a list of statewide Family Support Groups. Several of the Autism Action Groups have also developed regional listings of resources.
The Virginia Family Special Education Connection is funded by the Virginia Department of Education to provide families with critical and practical information regarding special education services in VA.
VA Parent Resource Centers (PRCs) are committed to facilitating positive parent-school relationships for the benefit of students. PRCs assist parents with questions, problem solving and planning, and provide resources, information and training sessions.
The Arc of Virginia is committed to providing families and self-advocates with the best information and resources to support them through their lives. This section of their website, Help for Families, includes important information about how to get services started and what is available in Virginia. The section includes information on Services for Infants and Toddlers, Medicaid Waivers, and Money Follows the Person. Several podcasts and webinars on these and other topics are also available for download on this site. In addition, the Arc of Virginia is always available to answer questions and help families solve problems as their lives and needs change.
Autism Speaks has become a powerhouse of information for families and providers. Their website has everything from blog posts by experts, to resource links, to providers and agencies, to science updates, to toolkits, to video libraries, and more. This website is an excellent resource for family members, as well as educators and providers who provide services and supports to newly diagnosed individuals and their families.
The Autism Society is a national grassroots autism organization with chapters in every state. The Autism Society is a leading advocacy group for individuals with ASD, their families, and the providers that care for them.
PEATC, or the Parent Educational Advocacy Training Center, has the mission to "build positive futures for Virginia's children by working collaboratively with families, schools and communities in order to improve opportunities for excellence in education and success in school and community life." PEATC provides training, support, and outreach to children with disabilities, their families, and the professionals who work with them.
The Online Asperger Syndrome Information and Support (OASIS) has joined with MAAP Services for Autism and Asperger Syndrome to create a single online resource for families. Their website includes information about trainings, events, and camping opportunities.
Operation Autism Online is a resource specifically designed for military families raising a child with ASD. The website includes resources, tips, news, and information about healthcare and other topics for military families.
The ALLIANCE National Parent Technical Assistance Center provides Parent Centers, Parent Training and Information Centers, and Community Parent Resource Centers with innovative technical assistance, up-to-date information, and high quality resources and materials. A major goal of the ALLIANCE National PTAC is to build the capacity of Parent Centers in order to improve results for children with disabilities ages 0-26 in rural, urban, and suburban areas and from underrepresented and underserved populations. These centers provide technical assistance to families, as well as, resources and materials.
The Center for Family Involvement at the Partnership for People with Disabilities at Virginia Commonwealth University partners with the Virginia departments of Education and Health, the federal Maternal and Child Health Bureau, the Administration on Intellectual and Developmental Disabilities, and others in supporting a variety of activities to strengthen family involvement. The Center for Family Involvement works with families to increase their skills as advocates, mentors and leaders so that families, children and young adults with disabilities can lead the lives they want.
Guides and Factsheets
The Organization for Autism Research has an extensive parents' guide research document.
VCU-ACE has developed Fact Sheets and Briefs on a variety of topics, which may be helpful to families.
Commonwealth Autism Service has developed this factsheet, which offers information on funding options and opportunities in VA.
Children with disabilities may be eligible for Social Security funding. This fact sheet provides information on Social Security Disability Programs and the answers to frequently asked questions on eligibility.
Parents and caregivers everywhere are eager for credible, research-based information on the most effective treatments for ASD. To address this need, the National Autism Center has released its newest manual, "A Parent's Guide to Evidence-Based Practice and Autism."
Autism Speaks has developed an Advocacy Tool Kit that aims to help both individuals on the spectrum and their families develop and use critical advocacy skills in order to achieve the best possible outcomes.
Autism Speaks has created several tool kits to help families and service providers with many of the challenges faced by children with ASD.
The VA Department of Education has developed a guidance document on Models of Best Practice in the Education of Students with Autism Spectrum Disorders. The information presented is designed to guide all schools' practices for educating students with ASD and to promote consistency of programming across educational environments throughout the Commonwealth. This document is intended to serve as a resource primarily for educators, but may also be helpful to parents, medical professionals, and other providers when they are making informed choices about the education of students with ASD. The purpose of the Models of Best Practice document is to provide the tools required to consistently meet the multifaceted needs of students with ASD in the educational setting. The document outlines comprehensive information on the array of available research-based strategies and supports. Content will enable teachers and related services staff to identify and implement practices that have the desired effects both on students' short-term functioning and long-term independence.
Videos and Training
VCU-ACE, in collaboration with the Virginia Autism Council, has developed a self-paced online course for families, My Child was Just Identified with an Autism Spectrum Disorder: Now What Do I Do? This course was designed to introduce families to the characteristics, needs, and recommended services for young children with autism spectrum disorders. This course provides a brief description of the defining characteristics of an autism spectrum disorder. The focus of this course, however, is on effective services, supports, and strategies.
Autism Internet Modules, or AIM, has created a large list of free, online, educational modules designed for educators, professionals, and families. All modules were written by experts from across the United States and the list includes a wide variety of topics.
The Center for Excellence in Developmental Disabilities at the UC Davis Mind Institute has developed a series of Modules called Autism Distance Education Parent Training (ADEPT), which includes helpful forms and checklists and a glossary of key terms.
Autism Speaks has developed an ASD Video Glossary. This innovative web-based tool was designed to help parents and professionals learn more about the early red flags and diagnostic features of ASD. The glossary contains over a hundred video clips and is available free of charge. Whether you are a parent, family member, friend, physician, clinician, childcare provider, or educator, it can help you see the subtle differences between typical and delayed development in young children and spot the early red flags for ASD.
Research and Articles
Cassidy, A., McConkey, R., Truesdale-Kennedy, M., and Slevin, E. (2008). Preschoolers with autism spectrum disorders: The impact on families and the supports available to them. Early Child Development and Care, 178(2), 115-128.
Karst, J.S., & Van Hecke, A.V. (2012). Parent and family impact of Autism Spectrum Disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15, 244-247.
Murray, M.M., Ackerman-Spain, K., Williams, E.U., & Ryley, A.T. (2011). Knowledge is power: Empowering the autism community through parent-professional training. The School Community Journal, 21(1), 19-36.
Ozonoff, S., Young, G.S., Steinfeld, M.B., Hill, M.M., Cook, I., Hutman, T., Macari, S., Rogers, S.J., & Sigman, M. (2009). How early do parent concerns predict later autism diagnosis? Journal of Developmental and Behavioral Pediatrics, 30(5), 367-75.
Steiner, A.M. (2011). A strength-based approach to parent education for children with autism. Journal of Positive Behavior Interventions, 3(3), 78-90.
Williamson, E.D., & Martin, A. (2012). Pyschotropic medications in autism: Practical considerations for parents. Journal of Autism and Developmental Disorders, 42, 1249-1255.
The Interactive Autism Network, or IAN, is a grant-funded online community hosted by Kennedy Krieger Institute with the goal of creating a virtual library of autism research and making that research readily available to families, professionals, individuals with ASD, and community members. The IAN community is a way for families and those with ASD to participate in research, but is also a resource that details current and relevant research in family friendly language. Below is a list of articles that families might find useful: