Resources


 

AMCHP State Public Health Autism Resource Center (SPHARC)
The Association of Maternal & Child Health Programs has launched the State Public Health Autism Resource Center (SPHARC) in partnership with the Maternal and Child Health Bureau. Drawing on the experiences and successes of states and our partners, SPHARC coordinates and organizes public health resources around the diagnosis, care, and quality of life for families and children affected by Autism Spectrum Disorders and developmental disabilities. Visit SPHARC for guides, case studies, and information on how to develop a public health framework around autism in your own state or community.

Association of University Centers on Disabilities (AUCD)
The AUCD is a membership organization that supports and promotes a national network of university-based interdisciplinary programs consisting of the University Centers for Excellence in Developmental Disabilities (UCEDD), Leadership Education in Neurodevelopmental Disabilities (LEND) Programs, and the Intellectual and Developmental Disability Research Centers (IDDRC). These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change. 

Through its members, AUCD is a resource for local, state, national, and international agencies, organizations, and policy makers concerned about people living with developmental and other disabilities and their families. AUCD programs also train the next generation of leaders in disability-related research, training, service delivery, and policy advocacy to insure that this essential work continues.

Autism and Developmental Disabilities Monitoring (ADDM) Network
The ADDM Network is a group of programs funded by the CDC to determine the prevalence of the Autism Spectrum Disorders (ASDs) in U.S. communities.

Autism Internet Modules (AIM)
More school/community focused
The AIM project will develop a series of 60 modules by the time the project is complete on topics including assessment and identification, characteristics, evidence-based practices and interventions, transition to adulthood, and employment. Module authors include experts on ASD from across the nation. The AIM platform was designed and built by the Ohio Center for Autism and Low Incidence staff with components consistent with research on how adults learn. Information is presented at a universal reading level with activities providing support to those with introductory or advanced knowledge on ASD. These modules are available at no cost to any computer or digital telephone user.

Autism Society of America (ASA)
The Autism Society of America, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. They do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.

Autism Source (sponsored by ASA)
Created in 2004, is the ASA's online referral database.

Autism Speaks
Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

The Autism Speaks 100 Day Kit is created specifically for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism.

Easter Seals
Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

State Autism Profiles
Easter Seals has prepared a state-of-the-state report of autism services in the 50 states, the District of Columbia and Puerto Rico. The profiles highlight the number of children with autism who have received the state’s special education services, state insurance coverage for autism if available, Medicaid services for specificr individuals with autism, educational programs provided to students with autism or training that focused on autism, special education criteria, other state-led resources, and sponsors of autism legislation.

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through their national network, they provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. 

Health Workforce Information Center (HWIC) provides free access to the most recent resources on the nation’s health workforce in one easy-to-use online location. Resources available through HWIC’s website will help health providers, educators, researchers and policymakers around the nation develop strategies to meet future workforce demands. Information contained includes health workforce programs and funding sources, workforce data, research and policy, educational opportunities and models, and news and events. 

IAN- Interactive Autism Network
IAN, the Interactive Autism Network, is an innovative online project designed to accelerate the pace of autism research by linking researchers and families. Anyone impacted by an Autism Spectrum Disorder (ASD) can become part of IAN's online community to stay informed about autism research, provide feedback, and make their voices heard.

In addition, families of children with an ASD can share information in a secure online setting and become part of the nation's largest online research effort.

Interagency Autism Coordinating Committee (IACC)
The Interagency Autism Coordinating Committee (IACC) coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to (1) facilitate the efficient and effective exchange of information on ASD activities among the member agencies, (2) coordinate ASD-related activities, and (3) increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research, screening, education, and interventions.

“Learn the Signs. Act Early.” Campaign
The Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD), in collaboration with a number of national partners, launched a public awareness campaign called “Learn the Signs. Act Early.” The campaign aims to educate parents about childhood development, including early warning signs of autism and other developmental disorders, and encourages developmental screening and intervention. 

"Learn the Signs. Act Early." builds on familiar experiences of parents, such as monitoring their children’s physical growth, and expands to social and emotional milestones such as how children speak, learn, act and play. Just as taking a first step is a developmental milestone, so is smiling, pointing and enjoying social play. While every child is different and develops at his or her own pace, there are still milestones that each child should reach within a certain range of time. The early identification of developmental concerns allows parents to seek intervention during the crucial period of early development.

Maternal and Child Health Bureau is part of the Health Resources and Services Administration, U.S. Department of Health and Human Services and is responsible for meeting the needs of the maternal and child health populations of the United States and its jurisdictions. 

National Conference of State Legislatures
The National Conference of State Legislatures' Autism Legislation Database provides information about autism legislation introduced in the 50 states and the District of Columbia from the 2008 legislative session to present. The database can be searched by state, topic, keyword, status, year, bill number, or primary sponsor. Topics include awareness, education, financing, health and human services, infrastructure, insurance, professional training, and screening. New legislation will be added to the database as it is introduced.

National Medical Home Autism Initiative
The National Medical Home Autism Initiative, founded as a cooperative agreement by the federal Maternal Child Health Bureau, is a national technical assistance, resource and advocacy project designed to promote methods that will improve the capacity of the medical home and early intervention community to identify, appropriately serve and integrate children with autism into their communities.

The primary purpose of the project is to identify and demonstrate how principles of the medical home can be applied to achieve early identification and intervention for children with autism spectrum disorders.

National Professional Development Center (NPDC) on ASD
A multi-university center that promotes the use of evidence-based practice for children and adolescents with autism spectrum disorders. The goals of the NPDC are to promote optimal development and learning of infants, children and youth with ASD and provide support to their families through the use of evidence-based practices, increase the number of highly qualified personnel serving children with ASD through sustainable technical assistance and professional development, and increase the capacity of states to implement evidence-based practices for early identification, intervention, education, professional development, and technical assistance.

Organization for Autism Research (OAR)
The Organization for Autism Research (OAR) was created in December 2001–the product of the shared vision and unique life experiences of OAR’s seven founders. Led by these parents and grandparents of children and adults on the autism spectrum, OAR set out to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily. OAR’s programs revolve around funding new research and disseminating evidence-based information in a form that translates the technical into layman’s terms for the non-scientific consumer.