Supporting Families
When there is a concern about the possibility of autism, parents need specific information, a prompt referral for screening and/or evaluation along with access to resources that will help them reach balanced decisions about interventions. Providing families with access to informational and emotional support is critical, but often overlooked. In an article by Sperry, et al titled "Services for Young Children with Autism Spectrum Disorders: Voices of Parents and Providers," parents that were part of the focus groups "emphasized the need for services to be family centered," along with specific support services such as respite and parent-to-parent support.
First Signs, Inc. is a national non-profit organization dedicated to educating parents and physicians about the early warning signs of autism and other developmental disorders. It provides resources to support parents and physicians in the early identification of children with autism and other developmental disorders.
Autism Speaks has published a 100 Day Kit that contains information and advice for families to use during the first 100 days following the diagnosis of autism. It contains a week by week plan, as well suggestions and forms that families can use as they begin to find services for their child.
First Signs, together with Autism Speaks and Florida State University's FIRST WORDS Project, has developed a Web-based ASD Video Glossary to help parents of children suspected of or recently diagnosed with autism understand the words and terms used in association with ASD. It contains hundreds of video clips contrasting behaviors that are red flags for ASD with behaviors that are typical.
The National Association of School Psychologists in conjunction with the
National Mental Health and Education Center developed a document called
"Autism Spectrum Disorders: A Primer for Parents and Educators" (2004) 
(PDF: 148kb) .
The National Dissemination Center for Children with Disabilitiesm (NICHCY) has a fact
sheet with basic information and tips for families on
Autism and Pervasive Developmental Disorder (PDD) (2007) (PDF: 182kb)
There are a number of national organizations that provide information, support, networking and advocacy including:
- Autism National Committee was founded in 1990 to "protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior."
- Autism Society of America (ASA) offers a variety of general information on autism for parents and professionals. Links to ASA chapters and resources, information packets, link to national resources, information on IDEA.
- Autism Speaks (founded in 2005 by grandparents of a child with autism) 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." In 2006, Autism Speaks merged with the National Alliance for Autism Research (NAAR), established in 1994 by parents of children with autism concerned about the limited amount of funding available for autism research. The Autism Speaks site provides information about autism, autism interventions, how to cope with autism, expert interviews, and other resources.