Compiled by Peggy Halliday, MEd, BCBA, Julia Weiss (Extern), and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
The following websites include milestones, checklists, booklets, and a wealth of information to help parents become savvy consumers of autism treatment. The contributors are parent groups as well as professional, medical, scientific, and legal and/or advocacy organizations which are available to meet the needs of families.
Section I: Some Related Organizations
American Academy of Pediatrics (AAP)
The AAP is an organization of 67,000 pediatricians committed to the well-being of infants, children, adolescents, and young adults. The AAP website contains current information about autism prevalence, links to many external resources and training websites, information about pediatrician surveillance and screening, and early intervention guidelines. This site offers a number of tools and resources for pediatricians to share with families so please be sure to visit this page as well.
Association for Science in Autism Treatment (ASAT)
ASAT is a non-profit organization founded in 1998 “to promote safe, effective, science-based treatments for people with autism by disseminating accurate, timely, and scientifically sound information, advocating for the use of scientific methods to guide treatment and combating unsubstantiated, inaccurate and false information about autism and its treatment.” To serve its mission, ASAT provides a comprehensive website which includes Research Synopses of a vast array of autism treatments to help families and organizations make informed choices, as well as specific resources for parents of newly diagnosed children, educators, journalists, behavior analysts and other service providers, pediatricians, and college faculty. ASAT also publishes a monthly online publication, Science in Autism Treatment, with over 12,000 subscribers from all 50 states and over 100 countries. ASAT has a Media Watch Initiative that responds quickly to both accurate and inaccurate portrayals of autism treatment in the media, and an Externship Program which includes students, professionals, and family members.
Autism NJ is now the largest statewide network of parents and professionals dedicated to improving the lives of individuals with autism and their families. Since its establishment in 1965, Autism New Jersey’s mission has been to ensure that all individuals with autism receive appropriate services. Autism New Jersey is a nonprofit agency committed to ensuring safe and fulfilling lives for individuals with autism, their families, and the professionals who support them through awareness, credible information grounded in science, education, and public policy initiatives. They host an excellent annual conference and offer numerous resources on topics of importance to parents and professionals alike. Parents are encouraged to visit this page to learn more about autism in general, age-related concerns, and to peruse a library of articles.
The Autism Science Foundation (ASF)
As well as providing basic information about autism and lifespan- related content to the general public and promoting awareness of the needs of individuals and families affected by autism, the Autism Science Foundation’s mission is to support and fund scientists and organizations conducting research into autism spectrum disorder.
Autism Speaks supports global research into the causes, prevention, and treatments for autism and raises public awareness. The website contains information on resources organized by state, life stage, and level of support, as well as toolkits for families, advocacy news, and suggested apps for learners with autism. The Autism Speaks 100 – Day Kit for Newly Diagnosed Families of Young Children was created specifically for families of children ages four and younger to make the best possible use of the 100 days following their child’s diagnosis of autism.
Autism Support Network Society (ASN)
The Autism Support Network Society (ASN) is a parent run, BC Canada-based organization that provides education on and improved access to quality science-based autism treatment. Their Welcome to Autism Series assists parents in becoming savvy consumers of autism services and gives guidance in how to start up home-based ABA programs. They host free online presentations by experienced parents, BCBAs and other professionals on topics like ABA in Schools, Advocacy, Potty Training, Practical Functional Assessment, and Social Skills etc. The ASN provides free one-on-one support and group support in English, Mandarin, Farsi, Punjabi and Hindi.
Cambridge Center for Behavioral Studies
The Cambridge Center for Behavioral Studies website seeks to bring together knowledge and behavior analysis resources, a glossary of behavioral terms, online tutorials, and suggestions for effective parenting, as well as a section for autism. A continuing education course series is offered through collaboration with the University of West Florida and is designed to provide instruction in a variety of areas of behavior analysis. To utilize all the features of the website, you must register.
Centers for Disease Control and Prevention (CDC)
Aside from a page dedicated to autism, the Act Early website from the CDC contains an interactive and easy-to-use milestone checklist to track how your child plays, learns, speaks, acts, and moves from ages 3 months through 5 years. The milestone checklist is now available as a free downloadable tracker that follows your child’s progress. There are tips on how to share your concerns with your child’s doctor and free materials that you can order, including fact sheets, resource kits, and growth charts.
Council of Parent Attorneys and Advocates, Inc. (COPAA)
The Council of Parent Attorneys and Advocates is a national American advocacy association of parents of children with disabilities, their attorneys, advocates, and others who support the educational and civil rights of children with disabilities. The website provides important information about entitlements under federal law and is divided into resources for students and families, attorneys, advocates, and related professionals, and a peer-to-peer connection site. You may also be interested in their Guidelines for Choosing an Attorney and Guidelines for Choosing an Advocate.
Education Resources Information Center (ERIC)
Sponsored by the Institute of Education Services (IES) of the U.S. Dept. of Education, ERIC provides ready access to education literature to support the use of educational research and information to improve practice in learning, teaching, educational decision-making, and research. Here is a link to review articles specific to autism.
The First Signs website contains a variety of helpful resources related to identifying and recognizing the first signs of autism spectrum disorder, and the screening and referral process. A video glossary is useful in demonstrating how you can spot the early red flags for autism by viewing side-by-side video clips of children with typical behaviors in comparison with children with autism. First Signs aims to lower the age at which children are identified with developmental delays and disorders through improved screening and referral practices.
Individuals with Disabilities Act (IDEA)
IDEA is a law that ensures services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities. The IDEA website showcases resources for parents and contains information on early intervention services, local and state funding, and Individualized Educational Plan (IEP) issues including evaluation, reevaluation, and procedural safeguards.
The Interagency Autism Coordinating Committee (IACC)
IACC coordinates ASD-related activities across the United States Health and Human Services Department and the Office of Autism Research. The IACC publishes yearly summary advance updates related to autism spectrum disorder.
This organization developed three “Big Red Safety Toolkits” to respond to wandering incidents: one for caregivers, one for first responders, and one for teachers. Although the Big Red Safety Toolkits program has been discontinued due to a lack of funding, the toolkits remain free and downloadable.
The NAC is a nonprofit organization dedicated to disseminating evidence-based information about the treatment of autism spectrum disorder and promoting best practices. Through the multi-year National Standards Project, the NAC established a set of standards for effective, research-validated educational and behavioral interventions. The resulting National Standards Reports (2009 and 2015) offer comprehensive and reliable resources for families and practitioners. The Phase 3 report will be available soon.
National Council on Severe Autism
This organization focuses on raising awareness and pursuing policy, initiatives, and intervention to address the complex, and often unmet, needs of individuals and their families who are impacted by severe forms of autism. This organization has published an array of position statements on many important matters and created a useful resource page.
National Professional Development Center on Autism Spectrum Disorders (NPDC)
In 2014, the NPDC classified 27 interventions as evidence-based practices for teaching individuals with autism using rigorous criteria. This website allows you to access online modules for many of these practices as well as an overview and general description, step-by-step instructions, and an implementation checklist for each of the practices. NPDC is currently in the process of updating the systematic review through 2017 as part of the Clearinghouse on Autism Evidence and Practice. It also has a multi-university center dedicated to the promotion of evidence-based practices for ASD. The Center operates three sites at UC Davis MIND Institute, Waisman Center, and the Franklin Porter Graham Child Development Institute at the University of North Carolina Chapel Hill. Each of these websites offers information including factsheets, online training modules, and other resources.
NIH National Institutes of Health (NIH)
The NIH, a part of the U.S. Department of Health and Human Services, is the primary federal agency for conducting and supporting medical research. Helping to lead the way toward important medical discoveries that improve people’s health and save lives, NIH scientists investigate ways to prevent disease as well as researching the causes, treatments, and even cures for common and rare diseases. There is a section dedicated to autism.
The Ohio Center for Autism and Low Incidence (OCALI)
OCALI, working in collaboration with the Ohio Department of Education, is a clearinghouse of information on autism research, resources, and trends. The OCALI website contains training and technical assistance including assessment resources and ASD service guidelines. Their Autism Center strives to support school districts and other education agencies in developing and improving upon instruction and support for students with autism.
Organization for Autism Research (OAR)
OAR is a nonprofit organization dedicated to applying research to the daily challenges of those living with autism. OAR funds new research and disseminates evidence-based information in a form clearly understandable to the non-scientific consumer. The OAR website contains downloadable resources such as comprehensive guidebooks, manuals, and booklets for families, professionals, and first responders. OAR offers recommendations and worksheets for educators and service providers to assist in classroom planning, and a newsletter, “The OARacle.” In conjunction with the American Legion Child Welfare Foundation, OAR also offers Operation Autism for Military Families, a web-based resource specifically designed and created to support military families that have children with autism.
Virginia Commonwealth University Autism Center for Excellence
VCU-ACE is a university-based technical assistance, professional development, and educational research center for autism spectrum disorder in the state of Virginia. VCU-ACE offers a wide variety of online training opportunities for professionals, families, individuals with ASD, and the community at large. The website contains many useful resources, including a series of short how-to videos demonstrating evidence-based strategies, webcasts, and online courses. Here is a link to a section dedicated to autism.
Wrightslaw is an organization which provides helpful information about special education law, education law, and advocacy for children with disabilities in the USA. The Wrightslaw website contains an advocacy and law library including articles, cases, FAQs and success stories, and information on IDEA. There is a section dedicated to autism.
Zero to Three: National Center for Infants, Toddlers, and Families
This is a national, nonprofit organization which seeks to inform, educate, and support professionals who influence the lives of infants and toddlers. The organization supports the healthy development and well-being of infants, toddlers, and their families by supplying parents with practical resources that help them connect positively with their babies. They also share information about the Military Families Project, which supplies training, information, and resources for military families with young children.
Section II: Some Related Organizations Geared Toward Professionals
We also wanted to provide you with a brief overview of some organizations geared toward professionals that you might hear about.
Association for Behavior Analysis International (ABAI)
ABAI is a nonprofit professional membership organization whose objective for education is to develop, improve, and disseminate best practices in the recruitment, training, and professional development of behavior analysts. ABAI offers membership to professionals and consumers, which entitles them to a newsletter and other benefits, including event registration discounts, membership in special interest groups, and continuing education opportunities.
Association of Professional Behavior Analysts (APBA)
APBA is a nonprofit professional membership organization that is focused on serving professional practitioners of behavior analysis by promoting and advancing the science-based practice of applied behavior analysis. Membership is open to professional behavior analysts and others who are interested in the practice of ABA, including professionals from various disciplines, consumers, and students.
Behavior Analyst Certification Board (BACB)
The BACB is a nonprofit corporation established in response to credentialing needs identified by behavior analysts, state governments, and consumers of behavior analysis services. Their mission is to develop, promote and implement an international certification program for behavior analysis practitioners. The BACB website contains information for consumers (including a description of behavior analysis), conduct guidelines, requirements for becoming certified and maintaining certification, and a registry of certificants that can be searched by name, state, or country.
Behavior Development Solutions (BDS)
BDS has helped behavior analysts become Board-certified, primarily through their CBA Learning Module Series, an exam prep and curriculum supplement for behavior analysts in training. Built into the modules are ample practice opportunities to ensure fluency and maintenance. BDS also provide continuing education courses for certified behavior analysts and licensed psychologists. Many of these are
Council for Exceptional Children (CEC)
The CEC is an international professional organization dedicated to improving the educational outcomes and quality of life for individuals with exceptionalities. The focus is on helping educators obtain the resources necessary for effective professional practice. Autism is one of the many disabilities discussed.
Rethink is a global health technology company which provides a cloud-based treatment tool for individuals with developmental disabilities and their caregivers. Their web-based platform includes a comprehensive curriculum, hundreds of dynamic instructional videos of teaching interactions, step-by-step training modules, and progress tracking features. There is a section for parents as well.
Citation for this article:
Halliday, P., Weiss, J., & Celiberti, D (2022). Consumer Corner: Some websites and online resources for parents. Science in Autism Treatment, 19(9).
