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Finding and Using Online Information about ASD: Tips for Families and Professionals

Presented by Rebecca J. McCauley, Ph.D.

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Treatment of Autism Spectrum Disorder, Second Edition

To work effectively with individuals who have autism spectrum disorder (ASD), SLPs and other practitioners need in‐depth knowledge on choosing and implementing interventions for communication and social challenges. The second edition of this bestselling textbook gives professionals the foundation they need to evaluate and compare today’s widely used interventions—and determine which ones will promote the best outcomes for the people they serve.

https://bpub.fyi/TreatmentofASD2e

Giveaway

We’re giving away 3 FREE copies of Treatment of Autism Spectrum Disorder, Second Edition!

Survey

At the end of the webinar, you’ll be prompted to complete a short survey. Let us know what you thought, and you could win a free book!

Certificates of attendance are available for all webinar viewers.

Objectives

At the end of our brief time today, audience members should be able to:

Evaluate websites for their likely accuracy and impartiality about ASD
Identify reliable online resources families can use or share
Identify additional sources for SLPs (as well as educators, OTs, PTs, and physicians)

Evaluating Information Sources

Especially Regarding Treatment Websites as Sources of Information

Pros

Presentation of wide‐ranging perspectives
User friendly writing

Cons

Overwhelming in number
Misleading or even untruthful
Little or no way to track information over time

Website Content Should Be “CUTER”

Criteria based on DISCERN developed for consumer health information (discern.org.uk), NIH (2011); Rogers, Dawson & Vismara (2012)

Current: Can you find dates for specific sources of information contained in the website? If you can, are they current?
Unbiased: Does the website present multiple points of view or identify possible options rather than focus on only a single point of view?
Trustworthy: Was the website created and is it maintained by an individual or organization that seems likely to have the best interests of the users at heart? Does it contain content that seems designed primarily to sell you a product, assessment or treatment?
Evidence‐Based: If the website claims to be evidence based, does it provide references to research so that you can review any research claims that are made? Does it provide more information from systematic research than from personal testimonials?
Reasonable: Does the website discuss shorter‐ and longer‐term risks as well as benefits of products and interventions? Are the described outcomes sensible or practical rather than grandiose?

3 Sources for Families

Diagnosis Treatment What they can do Living in the community Transition Safety to adulthood Sleep Haircuts

First Words Project

Based on research by Woods, Wetherby and colleagues (chapter 11)
Includes many videos and downloadable documents about milestones of children’s gestural and verbal communication development and interactions with objects. Appropriate for a range of parents from those who are curious about what to expect to those who are seeking screening for their child, perhaps before pursuing contact with a professional.
First Words Project Baby Navigator → Autism Navigator

Organization For Autism Research (OAR)

An organization with a singular focus on applied research and the quality and practical value of its resource materials of interest to people with ASD, parents, and professionals.
Kits for kids – Materials designed to facilitate learning in elementary and middle school for children with ASD.
Eight Life Journey into Autism Guidebooks and some associated websites.
Research Autism

National Autism Association

A parent‐run advocacy group whose mission is “responding to the most urgent needs of the autism community.” Special attention to safety, abuse, crisis prevention, and autism‐related wandering prevention and response.
NAA Big Red Safety box – Designed for parents, educators, and first‐responders.

3 Sources for SLPs

Evidence is pre‐evaluated, summarized, and when possible available for viewing.
ASHA: American Speech‐Language‐Hearing Association
Evidence‐maps‐Autism
Background, clinical roles, assessment, treatment in an informal style with many fewer references.

OCALI: Ohio Center On Autism And Low Incidence Disorders

AUTISM CENTER of OCALI - a variety of online print and video resources, primarily for educational settings but also for parents (e.g., a series of social narratives designed to support families during the 2020 COVID‐19 pandemic).
AIM (AUTISM INTERNET MODULES) – 48+ modules that include online case studies, instructional videos, pre‐ and post assessments, and a glossary; Includes at least 24 modules associated with EB practices (Odom et al. 2013).
Autism Internet Modules

NPDC: National Professional Development Center On ASD

Steinbrenner et al. (2020) Evidence‐based practices for children, youth, and young adults with autism. (140-page report).
Autism Focused Intervention Resources and Modules (AFFIRM) - 1 ½- to 2-hour modules on 27 practices identified as EBP in Steinbrenner, et al., 2020.
AFIRM

2 Sources for Educators

National Education Association (NEA)

Autism Resources for Teachers
Center funded to support implementation of multi-tiered supports for social-emotional competence for children from birth to age 5 at risk for or with identified developmental disabilities.
NEA

National Center for Pyramid Model Innovations

Training modules, videos, visual supports, scripted stories, forms, guides, handouts.
Challenging Behavior

Websites for Other Professionals

Occupational Therapists – Resources including a 2016 set of practice guidelines.
American Occupational Therapy Association
Pediatricians – Website from the American Academy of Pediatrics - healthychildren.org.
Healthy Children
Physical Therapists – Physical therapy guide to autism spectrum disorder.
Choose PT

Being Systematic About Searching

A Possible Search Strategy

Be clear about what you are looking for – Find a focus (e.g., sleep and autism, video modeling and autism)
Decide on how many locations you want to consider (1 really good one? 3 or 4 to be more comprehensive?)
Decide how to search
- Terms you used in your search engine
- What came up in your search (remember don’t necessarily look just at the first entries)
Keep a record of your search
- Including comments on whether the site is CUTER (current, unbiased, trustworthy, evidence-based, and reasonable).

References

DISCERN. Quality criteria for consumer health information. Discern
Khazzal, Y. et al. (2009). Brief DISCERN. Patient Education and Counseling, 77, 33‐37.
National Institutes of Health. (2011). How to evaluate health information on the Internet: Questions and answers. NIH
Odom, S. L. et al. (2013). Evidence‐based practices in interventions for children and youth with autism spectrum disorders. Preventing School Failure: Alternative Education for Children and Youth, 54(4), 275‐282.
Rogers, S. J. et al. (2012). An early start for your young child with autism. Guildford Press.
Steinbrenner et al. (2020) Evidence‐based practices for children, youth, and young adults with autism.
Woods, J. J. et al. (2021). Early Social Interaction in Treatment of autism spectrum disorders.

Questions?