Compiled by Peggy Halliday, MEd, BCBA
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.
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 recent 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 great tools and resources for both pediatricians and families.
The 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.
The 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.
The 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 journalists, medical providers, and parents of newly diagnosed children. 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.
As well as providing information about autism 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, treatments, and cure for autism and raises public awareness. The website contains information on resources by state, resources 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 4 and younger to make the best possible use of the 100 days following their child’s diagnosis of autism.
This organization has developed three “Big Red Safety Toolkits” to respond to wandering incidents: one for caregivers, one for first responders, and one for teachers. They are free and downloadable from their website.
The BACB is a nonprofit corporation established as a result of 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.
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. 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 of the features of the website, you must register.
The Act Early website from the CDC contains an interactive and easy-to-use milestones’ checklist to track how your child plays, learns, speaks, acts, and moves from ages 3 months through 5 years. The milestones’ 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.
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.
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.
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.
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.
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 contains information on early intervention services, local and state funding, and Individualized Educational Plan (IEP) issues including evaluation, reevaluation, and procedural safeguards.
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 from the field of autism spectrum disorder.
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 & 2015) offer comprehensive and reliable resources for families and practitioners.
In 2014, the NPDC classified using rigorous criteria 27 focused interventions as evidence-practices for teaching individuals with autism. 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 Caroline Chapel Hill. Each of these websites delivers a wealth of information including online training modules, resources, factsheets, and more.
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.
The 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.
The 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.
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.
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 particular evidence-based strategies, webcasts, and online courses.
Wrights Law is an organization which provides helpful information about special education law, education law, and advocacy for children with disabilities in the USA. The Wrights Law website contains an advocacy and law library including articles, cases, FAQs and success stories, and information on IDEA.
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 trainings, information, and resources for military families with young children.
Citation for this article:
Halliday, P. (2019). Consumer corner: Some resources for parents. Science in Autism Treatment, 16(4).