Autism Spectrum Disorder
By Mike R. Fraser, PhD
Autism Spectrum Disorder (ASD) brings together many maternal and child health issues including health policy and politics, healthcare financing and access, public health science and evidence-based decision making, family and professional partnerships, and the need for increased support for both research and practice at the state and local levels. There are so many unknowns when it comes to ASD that it is difficult to feel like there is anything we can do to address this growing issue and yet because of the prevalence of ASD it is essential that we act to address the challenges autism poses for our families and friends, our neighbors and communities.
Since I joined AMCHP almost two years ago, I have been struck by the number of stories I hear from families living with autistic family members. These stories are difficult: they involve the sacrifice and the struggle that caregivers face daily in their experience caring for a son, daughter, cousin, grandchild or other family member living with ASD. These stories are inspiring: they celebrate the resiliency and resolve which parents, friends, and others living and working with autistic individuals bring to their daily lives and the many small victories and blessings that they observe every single day. These stories are also a call for action: with so much that is not known about ASD, including its cause and how to best treat it, we have to continue to invest in research as well as programs and services for families impacted by ASD in states and communities.
While there is much we do not know about autism we do know that early diagnosis and intervention can lead to improved outcomes for children and youth with ASD. That is why this month’s focus on Autism Awareness is so important – the more parents and health professionals do early on in a child’s life to screen for developmental delay the more opportunities there are to intervene, link to services, and develop systems to address the complex needs of individuals with ASD and their families. The “Learn the Signs, Act Early” campaign promoted by the Centers for Disease Control and Prevention (CDC) is a good example of a public health program that raises awareness of ASD and other developmental disabilities and links families to resources and support at the local level. State maternal and child health programs have also developed autism awareness campaigns and initiatives to address autism within their states. AMCHP is currently engaged in working with six state MCH programs that are funded by the Maternal and Child Health Bureau (MCHB) to develop state plans for autism and we will be sharing the work of these states with all Title V programs through our MCHB-funded State Public Health Coordinating Center for Autism.
Recently I had the chance to meet a young man living with autism. Diagnosed early, his family and he obtained services and supports from many agencies including public health and education. And while each day presents its challenges, this young man is anticipating college, working and living independently. His success is attributable to his own resolve and his family’s perseverance, fortitude and unending optimism. His success is also attributable to the services that were available to him in his community including access to well-trained professionals, accessible and supportive caregivers, and systems designed to meet the needs of families. While there is much that individual families can do to support their loves ones with ASD, systems of care are also needed to assure that individuals living with autism and other developmental disabilities have access to quality services that are culturally competent and family-centered.
Autism Awareness month is an opportunity to better understand ASD but also to educate and inform ourselves and our neighbors about what more is needed to build on successful plans and practices for individuals and families living with ASD. As maternal and child health programs continue to meet the needs of women, children and families nationwide AMCHP will continue to work with its members and partners to share what works, learn from new research and science, and advocate for continued support for programs to address the many challenges ASD presents for families and communities. I would love to hear from you as this work moves forward and continue to get your input and thoughts on how AMCHP can support state maternal and child health programs’ autism initiatives in the future.