RESOURCES AND LINKS
List of organizations and web resources focused on advocacy, information, and support for families affected by Autism Spectrum Disorder and other developmental disabilities.
LIST OF RESOURCES
100 Days Kit, Autism Speaks
This kit provides information to help families get through the first steps of an autism diagnosis.
A Parent’s Guide to Evidence-Based Practice and Autism
This manual from the National Autism Center aims to assist parents as they make difficult decisions about how best to help their children with autism spectrum disorders reach their full potential.
Autism Source, Autism Society of America (ASA)
ASA’s Autism Source is a database of resources in local communities. It includes contact information for ASA chapters and other local supports.
Autism Now is an initiative of The Arc and The Administration on Developmental Disabilities. This national autism resource and information center is a central point of resources and information for individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, and other key stakeholders.
Autism Wandering Awareness Alerts Response Education (AWAARE)
Working to prevent wandering incidents and deaths within the autism community.
Department of Education
The Department of Education (ED) has resources to assist with the educational needs of children with autism spectrum disorders and other disabilities. The ED’s Special Education Technical Assistance and Dissemination Network links to various websites and online resources that focus on special education issues, such as policy, technology, curriculum, and parent training. In addition, the Office of Special Education and Rehabilitative Services (OSERS) within the ED has resources for parents and individuals, school districts, and states in the areas of special education, vocational rehabilitation, and research.
FEAT provides families with hope and guidance to help their children with autism reach their full potential. It has flourished since it was conceived in 1996 by five families who shared a need. Today, nearly 5,000 members - clients, families, therapists, other health-related professionals, business partners, and friends - comprise its large community.
Life Journey Through Autism Series, Organization for Autism Research (OAR)
OAR has published five Life Journey guidebooks and The Best of The OARacle to date. You can read their descriptions, preview each online, or download copies at no cost. Most are available in Spanish.
A Parent’s Guide to Assessment
This guide helps parents understand the assessment process and learn how to use assessment results to improve their child’s services.
A Parent’s Guide to Research
This guide helps parents find, understand, and evaluate autism research studies.
A Guide for Transition to Adulthood
This guide provides an overview of the transition from school to adulthood.
Mental Health Services Locator, National Mental Health Information Center
The Mental Health Services Locator helps families and professionals find information about mental health services and resources by state and/or region. The National Mental Health Information Center is part of the Substance Abuse and Mental Health Services Administration of the Department of Health and Human Services.
This website is dedicated to disseminating safe and efficient functional assessment procedures that inform highly effective and humane treatments for problem behavior of persons with autism or intellectual disabilities.
State Programs, National Dissemination Center for Children with Disabilities (NICHCY)
Locate organizations and agencies within each state that address disability-related issues. NICHCY has compiled a resource directory by state that lists key programs for children with developmental disabilities and their families. The lists include state agencies serving children and youth with disabilities, state chapters of disability organizations and parent groups, and parent training and information projects.
The Washington Autism Alliance expands access to healthcare, education, and services for people with autism and other intellectual and developmental disabilities in Washington State.
Financial Resources for Health Care
Ben’s Fund was founded in 2012 by Seahawks General Manager/EVP John Schneider and his wife Traci. The fund was established in honor of their son, Ben, who was diagnosed with autism when he was 3 years old. Ben’s fund is available to families across Washington state that need financial assistance through their journey. The fund covers costs such as medical bills, therapies, and numerous other aspects of supporting a child or young adult on the autism spectrum. Ben’s Fund is available for up to $1000 per qualifying child or young adult, per award year.
Children’s Health Insurance Program
Insure Kids Now! is a national campaign to link the nation’s 10 million uninsured children–from birth to age 18–to free and low-cost health insurance. It is sponsored by the Department of Health and Human Services. Each state has a Children’s Health Insurance Program that provides free or low-cost health insurance for eligible children. The website has basic facts about these programs as well as links to every state’s program for children. The site also has information on where you can learn who is eligible for the program, how to apply, and what services are covered. You can get information in English and Spanish.
GovBenefits.gov is a partnership of Federal agencies with a shared vision – to provide improved, personalized access to government assistance programs. This website can help you determine if there are government benefits you can receive.
Medicaid is a federal program that helps certain groups of people pay for medical care. Each state regulates its own Medicaid program, so the rules may be slightly different state-to-state. To get information, contact the Medicaid office in your state.
Social Security Benefits
This booklet is for the parents, caregivers, or representatives of children under age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (SSDI benefit is called a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)
A growing number of national autism organizations partnered to form AutismCares, a national initiative to help families with members who have autism that are challenged by disasters in their community. AutismCares registers families through a free online service to help manage and store their health care records and ensure that trained case managers are able to locate them more effectively in case disaster strikes their community.
Additional Diagnosis Resources
PDA (Pathological Demand Avoidance) is widely understood to be a profile on the autism spectrum, involving the avoidance of everyday demands and the use of ‘social’ strategies as part of this avoidance. PDA individuals share autistic characteristics and also have many of the ‘key features’ of a PDA profile.
People who have an autism spectrum disorder may use assistive technology (AT). AT is any item that helps people do things in their daily lives. Examples of AT devices include a keyguard that helps children find the right keys on a computer keyboard, a simpler remote control for a TV or stereo, an adapted mouse that makes getting around on the computer easier, switches that help children play with toys, and talking books.
Assistive Devices, MEDLINEplus
MEDLINEplus is an online service of the National Library of Medicine and the National Institutes of Health. Updated daily, the site offers information on a range of health topics, including autism and assistive devices, in English and Spanish (En Español)
"No child is 'perfectly' whole in mind, body, spirit, ability... nor can any child meet all of a parent's hopes and expectations. Yet there is a wholeness of each and every child, a wholeness that is unique and brings with it a unique set of possibilities and limitations, a unique set of opportunities for fulfillment."
- Fred Rogers, Mister Roger's Neighborhood