Autism spectrum disorders (ASD), a group of developmental disabilities that impede an individual’s ability to communicate and interact socially, affect approximately one out of every 68 children in the United States today. They occur more often in boys, at the rate of approximately one out of every 42. Increasingly sophisticated methodologies for identifying an individual with autism or another condition on the spectrum have resulted in many more children receiving the kind of early intervention that can significantly improve their quality of life.
A wide variety of organizations have stepped forward to offer information, education, and advocacy on issues that affect individuals on the autism spectrum. Common to most of these groups is the desire to provide support to individuals and families, and to effect positive social change through fostering increased acceptance of individuals with autism. Whether founded by groups of involved parents or health care professionals, these organizations also share the goal of raising awareness about the importance of early diagnosis and intervention. And many are involved to one degree or another with legislative and regulatory efforts that increase the ability of people with autism to participate fully in the lives of their communities.
In the United States, many children still continue to be diagnosed comparatively late, often when they have passed age four. Yet the earlier the diagnosis, the better a child’s chances to receive the services and education that can help overcome the challenges associated with ASD. And socio-economically disadvantaged families often have fewer resources to assist them in obtaining an early diagnosis for a child with autism, which lowers those children’s chances for maximally effective treatment. This in turn can lead to lower rates of employment and other disadvantages later in life when compared with peers from higher income families. Many advocacy groups have called for a comprehensive nationwide plan to address the challenges all people on the autism spectrum face.
The Autism Society, founded in 1965 by well-known researchers Dr. Bernard Rimland and Dr. Ruth Sullivan, as well as other parents of young people with autism, is among the foremost autism advocacy groups in the United States. In 2006, President George W. Bush signed legislation spearheaded by the society that had the goal of promoting early detection and intervention through more thoroughgoing education of physicians. Based in Bethesda, Maryland, the group brings together a number of affiliates through a robust nationwide network and publishes the quarterly Autism Advocate.
Autism Speaks is widely recognized by its blue puzzle piece logo, popular throughout social networking sites where families share information on the condition. The group concentrates on research, service referrals for families, and a number of popular fundraising events.
The Organization for Autism Research works to make the findings of scientific research relevant to parents, caregivers, and individuals with autism as they seek practical information that will help them in their everyday lives. Its scientific council includes authorities from all over the country.
The Autism Research Institute, also established by Dr. Bernard Rimland in the 1960s, serves as a support network for families and an educational source for physicians. ARI offers a strong component that specifically assists adults on the autism spectrum.
The Centers for Disease Control and Prevention and the National Institute of Mental Health conduct autism-specific research and provide information to the public.
Beyond the United States, there are a number of organizations doing significant outreach, advocacy, and information and referral work. Autism Society Canada, established in 1976 by a group of activist parents, supports a broad range of public education programs on autism, as well as legislation that focuses on the needs of people on the autism spectrum. In addition, ASC has set up its website with links to resources throughout Canada that offer further information, services, and resources.
The National Autistic Society in the United Kingdom advocates for the right of people with autism to lead fulfilling lives on their own terms. NAS hosts conferences and offers information on employment, community programs, and support for daily living.
Throughout the world, including particularly in the British Isles, Scandinavia, and the nations of the Pacific Rim, similar organizations focus on the needs of people with autism.