Coursera - Autism Spectrum Disorder - Week 5 - January 11, 2020

Using Evidence-Based Practices

• complexities involved in the systems of care for individuals with autism spectrum disorders 
• costs associated with providing interventions, supports and treatments across the lifespan. 
• value and benefits of early intervention will also be shared, as well as some of the research-based programs currently being developed for very young children with autism. 
• services and supports provided to individuals on the autism spectrum involves many different agencies, as well as family and community supports. 
• Parts of the system of care include family, early intervention, the educational system, can include rehabilitative services, medical care through commercial insurance or Medicaid, mental healthcare as well as housing and many other resources that an individual may need to access in their adult life. 
• Autism is also considered one of the highest cost disabilities or disease states in the United States. 
• Part of the individual annual costs in the United States include not only the cost of special education, but also productivity loss by caregivers, productivity loss by the individual, medical services as well as none medical services. 
• as an individual ages and moves into adult services, residential care becomes a primary cost. One of the important considerations as the rates of autism increase is can anything reduce the impacts? 
• There is a strong consensus within the research community that intensive early intervention can reduce the cost of lifelong care by two-thirds. It also yields the most positive life outcomes for individuals affected by autism spectrum disorders.
•  Dr. Sally Rogers co-authored the Early Start Denver Model or ESDM, which she has been working on since the early 1980s. It's a program that has gained worldwide recognition, including a ranking on Time Magazine's top ten medical breakthroughs in 2012 for its promising results in children as young as 12 months. >> Something about these really, really little ones. I they're still in a developmental period where their peers are learning to talk. They're not out of sync yet with other 18 to 20 month olds. Everybody in that age is learning to talk. >> And we'll go open boats. >>
• The ESDM model is designed to work on improving several skills at once. >> So during the book routine, you saw me illicit eye contact, you saw me do vocal imitation with him, you saw me illicit sound effects with him with the, 
• The first ESDM study involved 48 toddlers with the same level of functioning, separated into two groups. One group received the ESDM therapy, the other was referred to a community program for therapy. After two years, the children in the ESDM group had an average IQ increase of 18 points, the other group increased only six points. >> Their language improved, as well and seven of the children in the ESDM model had enough improvement in overall skills to warrant a diagnosis change to a milder condition. 
• It's also elicited critics who say it falsely suggests, there's a cure for autism. Dr. Rogers says while it isn't a cure, the research speaks for itself. >> Autism is a description of a set of behaviors and behaviors change and if a child no longer meets behavioral criteria for autism, they don't have autism.
•  Remove the disability, help children function in every environment. Help them be able to interact with peers and do what life expects for them of their age.
• Pthere may eventually be a day when autism is described more as a learning challenge than a severe lifelong disability. But for now, much about autism is still a mystery. 
• the use of evidence-based treatments and practices have also been shown to produce positive outcomes. From a funding perspective, the use of evidence-based practice makes sense. As money is used to support interventions that are known to be effective based on scientific research. 
• The use of evidence-based practice can also preserve time to be used on interventions that do work, as opposed to using things that are unknown or unsupported by research.

Video: Who is Developing Evidence-based Practices?

• In this lesson we learn about the work of two key national projects. Who have undertaken the task of identifying, based on the research literature, the evidence based practices for autism spectrum disorders. 
• the National Professional Development Center for Autism Spectrum Disorders and the National Autism Center's National Standards Project. 
• 27 specific evidence based practices as identified by the National Professional Development Center for Autism Spectrum Disorders. 
• There is no one, single nationally adopted definition or set of evidence-based practices for Autism spectrum disorders. 
• projects have identified evidence-based practice, based on a meta analysis of the research literature. These projects are the National Professional Development Center for Autism Spectrum Disorders at the Frank Porter Graham Child Development Center at the University of North Carolina Chapel Hill and the National Autism Centers National Standards Project. 
• Beginning in 2008, the National Professional Development Center, which received funding from the Office of Special Education Programs. Conducted an extensive review of the autism intervention literature published between 1997 and 2007. Based on this literature review they identified 24 practices that met the criteria for evidence based practices for children and youth with Autism spectrum disorders. 
• In 2014 the National Professional Development Center released finding of another extensive review of studies. From the year 1990 through 201 for ages birth through 22. Based on this review they identified 27 practices that met the criteria for evidence-based practices for children and youth with autism. The findings from this extensive review can be found on the National Professional Development Center website. Their report titled Evidence Based Practices for Children Youth and Young Adults with Autism Spectrum Disorder, March 2014. Contains information on how these evidence based practices were reviewed and how they determined to be effective for the various age groups across the different domains.
• The National Professional Development Center definition of an evidence-based practice is a focused intervention practice that has substantial evidence for effectiveness in promoting positive outcomes for learners with ASD.
• To be considered in evidence-based practice in individuals with autism, efficacy must have been established through peer reviewed research in scientific journals using at least two high quality experimental or quasi experimental group designs. And articles must have been published by a t least two different researchers, or research groups. Or, there must have been at least five high quality single case design articles published by at least three different researchers, or research groups. Having a total of at least 20 participants across the studies. Or a combination of at least one high quality experimental or quasi experimental group design. And at least three high quality single subject design studies conducted. And published by at least two different research groups.
• This slide summarizes those findings. 
• On the left side you see a brief description of each of the 27 evidence-based practices. 
• And across the top it's broken into different domains, such as social, communication, behavior, joint attention, play and so forth. 
• In addition you see the age range in which the practice was identified to be effective. For example in green, anything highlighted in green is shown to be effective for individuals between birth and five years of age. 
• Anything highlighted in yellow was shown to be effective for individuals between the ages of six and 14. 
• And anything highlighted in blue will shown to be effective for individuals ranging from around 15 through H22 or adult transition. 
• The evidence based practices identified by the National Professional Development Center include Antecedent-based intervention, cognitive behavioral intervention, differential reinforcement, discrete trial teaching, exercise. Extinction procedures, functional behavior assessment, functional communication training, modeling. Naturalistic interventions, parent-implemented interventions, peer-mediated interventions and instruction. Picture exchange communication system, pivotal response training, prompting, reinforcement, response interruption and redirection. Scripting, self-management, social narratives, social skills training, structured playgroups, task analysis, technology-aided instruction & interventions, time delay, video modeling, and visual supports. Additional descriptions and information about each of these practices can be found in the 2014 National Professional Development Center report.

Video: What is Social Narrative?

• an evidence based practice, designed to help an individual anticipate and navigate change. The evidence based practice is called a Social Narrative.
• Many children on the autism spectrum, and those with other neuro-developmental differences have difficulty dealing with change.
• One strategy that can be helpful is using something called a Social Narrative
• Social Narratives are an evidence based practice that have been shown to be effective for children from the ages of early childhood through transition.
• Social Narratives are interventions that describe social situations in some detail by highlighting relevant cues and offering examples of appropriate responding.
• They're aimed at helping learners to adjust to changes in routines and adapt their behaviors based on social and physical cues of a situation. 
• Or they're used to teach specific social skills or behaviors. Social Narratives are individualized, according to the learner's needs, and typically, are quite short, perhaps including pictures, or other visual aids.
• Social Narratives are a quick, easy, and simple way to help your child anticipate changes in their routine. Or to adjust to things that may be different from what's usual. To learn more about Social Narratives, go to the Autism Internet Modules at www.autisminternetmodules.org.

Video: Why is the National Standard Report Important?

• In this lesson, you will learn more about the National Standards Project, originally published in 2009 and updated in 2015. The importance of this report is that it includes studies evaluating treatments for adults ages 22 and up, which has never been systematically done prior to this report. 
• The second national project, called the National Standards Report, was published originally in 2009 and updated in 2015. 
• The 2015 report, which is based on a review and analysis of the treatment literature conducted in the field between 2007 to 2012 provides an update to the empirical treatment literature as published in the First National Standards Report in the year 2009. And includes studies evaluating treatments for adults ages 22 and up, which has never been systematically evaluated before this report.
• So the National Standards Project varied in the way that it evaluated the research data from that of the national professional development center. 
• In the National Standards Report, a strength of evidence classification system was used. Independent evaluators read the research articles, and using a strength of evidence rating system, they scored each article. 
• These scores were then compiled and the particular practice was identified as either an established, an emerging, an unestablished, or an ineffective practice based on the ratings given by the independent evaluators using the Scientific Merit Rating Scale.
• In order for something to be considered an established evidence based practiced, there had to be several published peer reviewed studies. With scientific merit rating scale scores of 3, 4, or 5, with beneficial treatment effects for a specific targeted area, domain, or behavior. 
• In order for a practice to be considered emerging, there had to be a few published peer reviewed studies with a scientific merit rating scale score of 2. With beneficial treatment effects being reported for one dependent measure for a specific target. 
• In order to identify or classify a practice as unestablished, there may or may not be any research or published articles. Beneficial treatment effects could be reported based on poorly controlled studies, those with scores of 0 or 1 on the scientific merit rating scale. 
• Or, the claims may be based on testimonials, unverified clinical observations, opinions, or speculations. In order for a practice to be identified as ineffective or harmful, several published peer reviewed studies were required with a scientific merit rating scale score of 3 where the studies indicate no beneficial treatment effects for one dependent measure for a specific target. Or there are adverse treatment effects reported for one dependent measure for a specific target. In the 2015 report, there are 14 established interventions that have been thoroughly researched and have sufficient evidence for use to confidently state that they are effective. 
• There are 18 emerging interventions that have some evidence of effectiveness, but not enough for the National Standards Project to identify them as being fully effective or meeting their criteria for established. 
• There are 13 unestablished interventions identified, for which there's no sound evidence of effectiveness. In addition for adults age 22 and older, there's one established intervention that's been thoroughly researched and has sufficient evidence for the National Standards Project to confidently state that it's effective. 
• There is also one emerging intervention that has some evidence of effectiveness but not enough for the Nationals Standards Project to be confident that its truly effective. Additional research needs to be done, and there are four unestablished interventions for which there was no sound evidence of effectiveness identified. 
• The 14 established treatments based on the National Standards Project include behavioral interventions, cognitive behavioral intervention packages. Comprehensive behavioral treatment for young children, language training for production. Modeling, natural teaching strategies, parent training, peer training packages, pivotal response training, schedules. Scripting, self-management, social skills packages, and story-based interventions.
• Those practices identified as emerging for individuals up and through the age of 22 include augmentative and alternative communication devices, developmental relationship-based treatments. Exercise, exposure packages, functional communication training, imitation-based intervention, initiation training, language training for production and understanding. Massage therapy, multi-component packages, music therapy, picture exchange communication system, reductive packages, sign instruction. Social communication intervention, structured teaching, technology-based intervention, and theory of mind training.
• Those practices and treatments identified as unestablished by the National Standards Project include, animal assisted-therapy, auditory integration training, concept mapping, DIR or floor time. Facilitated communication, Gluten-free casein free diet, movement based intervention, sense theater intervention, sensory intervention packages. Shock therapy, social behavioral learning strategy, social cognition intervention, and social thinking intervention.
• For individuals ages 22 and up, the established intervention that was identified by the national standard project is behavioral interventions. The behavioral intervention category consist of applied behavior analytic interventions to increase adaptive behavior and decrease challenging behavior. Examples of specific strategies identified in the 17 articles supporting behavioral intervention can be found in the National Standards Report. The emerging intervention identified for individuals with autism aged 22 and older is vocational training package. The unestablished treatments or interventions for individuals ages 22 and older on the autism spectrum include cognitive-behavioral intervention packages, modeling, music therapy, and sensory integration packages.

Video: How can we Implement EBPs?

• In this lesson, you will learn about the importance of using evidence-based practices. You will also learn about implementation fidelity. And systems level supports that are required for evidenced-based practices to be implemented effectively. 
• Knowing about these evidence-based treatments and practices helps us to know which treatments have research and evidence of effectiveness, and which treatments do not. It can allow us to make informed decisions when we select treatments and interventions. And it can provide us with the opportunity to support individuals with autism spectrum disorders in reaching their full potential by using our time and resources wisely on those practices that do have research and evidence supporting their effectiveness.
• Knowing what the evidence-based practices are is an important initial step. But there's much more that goes into effective implementation of evidence-based practices. Implementation fidelity is a critical factor. What does this mean? 
• Fidelity means implementing an intervention in the same manner in which it was done in the evidence-based research. It's kind of like following your grandma's chocolate chip cookie recipe. If you substitute one ingredient for another, leave one out, or do something in an incorrect order, you're not likely to get the same outcome. 
• To reach implementation fidelity, the implementor needs to learn as much as possible about a particular practice. They also need to determine if it's a good fit for the individual learner, and the context in which the intervention will be implemented. Then they need to identify the implementation steps, and use the practice as it was intended. In addition, they need to monitor their use of the practice to ensure that they're not drifting from the fidelity of practice. And data needs to be collected on the learner to ensure that the treatment or intervention is having the desired effect. 
• In order to effectively implement evidence-based practices, there must also be systems level support for the use of a practice. This includes buy in and administrative or leadership support of a particular practice. Support for training and coaching for implementors. The availability of materials and resources that may be needed to implement a practice. There must be a willingness to self evaluate, and use learner data or fidelity checklists in order to make decisions. And a willingness to be flexible when necessary, but also to be stringent with the use of practices that are working. The systems that we're referring to can be within a classroom or school setting. They can be within a work training program, or a community integration program. Or they can be within a family home or family system. 
• No matter what the system, there needs to be a commitment and support in order to effectively implement evidence-based practices. With systems level support, the implementation of evidence-based practices can happen. And with the implementation of these practices, better outcomes can result. >> We hope that you've enjoyed the foundations of autism spectrum disorders class. This class has provided you with an overview of some of the characteristics and issues encountered by individuals on the autism spectrum. This also provided you with information about evidence-based practices. 
• As research continues to provide us with additional cues about the causes in potential treatments for autism and other neurodevelopmental disorders, we will continue to find new ways of disseminating these findings to the community. 
• One way that we began to support broader dissemination is through our international training program in neurodevelopmental disorders. An estimated 300 million individuals worldwide have a neurodevelopmental disorder. And only a small percentage of healthcare professionals are familiar with these conditions, and fewer still are expert in their treatment and support. 
• Our program educates our healthcare professionals from around the world in the treatment and support of individuals with neurodevelopmental conditions. To learn more about the program, please check out the international training program in neurodevelopmental disorders webpage on the MIND Institute website.

Suggested Activities

Suggested Activity: Read the Reports Discussed in the Module

These reports will provide an in depth explanation of how the evidence base for ASD interventions has been established using the two methods from each project. By reading these reports, you will develop a greater understanding of evidence-based practices for ASD. After reading the reports, make note of the similarities and differences in the way that the research literature was reviewed and think about which EBPs could be most effective and appropriate for the individuals and contexts in which you are involved.

National Autism Centers National Standards Report 2 (2015)

National Professional Development Center for ASD (2014)

Quiz

Attempt # 1: 80%

Attempt # 2