The Complexities of Establishing Evidence-Based Interventions for Autism

Giacomo Vivanti, Ph.D., dives into the complexities of establishing evidence-based autism interventions. He describes the ever-changing state of intervention literature, noting that autistic individuals still experience health inequalities. The speaker discusses four aspects of the interplay between research and practice and details studies demonstrating each assertion. Vivanti calls for universal outcome metrics based on well-being and considers how behavioral therapies can impact core autism symptoms (i.e., communication). The presenter asserts the usefulness of public health frameworks in assessing disparities between research and practice. He summarizes the presentation before the Q&A.

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In this webinar: 

1:15 – Individual evidence-based care
2:50 – Landscape of autism early interventions
4:55 – Health inequities for autistic individuals
6:45 – Study: Early onset dementia in autism
9:00 – Interplay of science and information dissemination
11:40 – Issue 1: The gap between research and practice
13:30 – Study: Treatment fidelity impact on skill acquisition
16:23 – Community implementation
19:00 – Community-partnered participatory research (CPPR)|
20:02 – Issue 2: Disagreements on what counts as evidence
24:15 – Study: Behavior analysts’ knowledge on naturalistic strategies
27:10 – Issue 3: Disagreements on conceptual categories
28:15 – Study: Meta-analysis of ABA treatments
29:55 – U.S. state insurance coverage
32:47 – Issue 4: Disagreement on intervention goals
37:05 – Complexity of well-being and autism symptoms
40:00 – Study: Consensus on target mechanisms
42:53 – Study: Inclusive vs autism-specific classroom learning opportunities
46:05 – Conclusions
48:20 – Q&A

Introduction

More research on autism early interventions has been published in the last three years than over the previous four decades combined (2:50). Vivanti explains that while the quality of early interventions has increased substantially, our knowledge is still rapidly evolving (4:05). Despite this, autistic individuals continue to experience health inequalities that lead to preventable adverse outcomes associated with mental and physical health, self-realization and self-determination, community participation, and educational opportunities (4:55). The presenter cites a study that found the chance of early onset dementia (Alzheimer’s) in autistic individuals is double that of the non-autistic population. He posits that this is due to the continued lack of cognitive, social, and educational support for autistic adults (6:45). Vivanti specifies four complexities of establishing evidence-based interventions:

# 1 – The gap between research and practice

The speaker recalls that his mother was blamed for his brother’s autism diagnosis in the 1990s, even though “cold parenting” had been disproven in the 1960s (9:00). Therefore, he continues, the first main issue in establishing evidence-based interventions is the gap between research and practice (11:40). The speaker explains how intervention procedures in community settings are often different from the procedures used in clinical trials (11:40). Vivanti details a study that assessed the association between outcomes of the Early Start Denver Model (ESDM) and intervention fidelity (adherence) to clinical implementation. Researchers found a lot of implementation variation not only across practitioners but also across patients of each practitioner (13:30). Children with the best outcomes were treated by therapists implementing interventions at higher fidelity (15:35). The presenter considers feasibility and philosophical commitments as reasons for such variations in community implementation (16:23). He underscores that procedures should be flexible to the individuals but rigorous as well. The speaker highlights community-partnered participatory research (CPPR) (19:00). 

# 2 – Disagreements about what counts as evidence

Vivanit explains that practitioners rely on information from different agencies and reviews that analyze the literature. However, each agency/review adheres to its own guidelines and criteria for what qualifies as evidenced-based (e.g., randomized trial vs. single subject design) (20:02). Different agencies therefore come to different conclusions about evidence-based interventions. Such confusion around facts makes clinicians and caregivers hesitant to adopt new interventions, despite documented effectiveness (23:05). The speaker outlines a survey study of 901 board-certified behavior analysts’ knowledge of naturalistic developmental behavioral interventions (NDBI). Although significant evidence supports NDBI efficacy, few participants believed these practices were effective or appropriate (24:15). 

# 3 – Disagreements on conceptual categories

Review agencies generally classify interventions according to conceptual categories like ABA, NDBI, CBT, etc. Vivanti explains that, again, arbitrary criteria for each category result in different recommendations for the evidence-based status of interventions across agencies (27:10). He outlines a meta-analysis of ABA-based interventions that found ABA therapies in various categories in several meta-analyses and reviews (28:15). Most states in the U.S., he continues, have an insurance coverage mandate for autism that specifically mentions ABA. Although providers are often willing to incorporate new evidence-based practices like the ESDM, insurance companies frequently refuse treatments if they are not identified as ABA (29:55). Therefore, many natural-based models are not provided, thus highlighting the extremely practical consequences of conceptual disagreements (31:50). 

# 4 – Disagreements on intervention goals

Vivanti asserts that “any consensus of what to do must be based on a consensus of why we are doing it.” He remembers thinking that the goals for his brother’s interventions ought to be based on safety and support in daily environments and activities (32:47). However, intervention goals are highly debated, which leads patients/users to assume interventions prioritize conformity and compliance at the expense of neurodiversity and individualized care. The speaker asserts that this lack of a universal metric for “successful outcomes” keeps service providers from being able to specifically communicate what they want to achieve (34:00). He underscores using language and concepts based on freedom from distress, community participation, and well-being across the lifetime (37:05). Vivanti and his colleagues tried to generate a consensus on legitimate aspects of effective interventions that are respectful to the diversity and uniqueness of children but also rigorously empower individuals. Researchers found that interventions informed by this model emphasize agency, learning through positive interactions, engagement in novel and familiar schemas, and an interplay of comfort and challenge (40:00). Another study found that autistic children with more social attention had better outcomes in inclusive classrooms compared to autism-specific classrooms (42:53). Such findings underscore the importance of rigorous individualized interventions.

Conclusion

The speaker emphasizes that knowledge of evidence-based interventions is advancing at an unprecedented pace. However, autistic people still experience healthcare differences. This is due to the complex interplay of research and practice. Key factors include disagreements about what counts as evidence, behavioral interventions, and intervention goals. These and other factors impacting implementation and adoption must be scientifically addressed and researched. Vivanti highlights that a public health framework can help examine these factors and contextualize challenges and opportunities associated with autism in the broader context of research and practice (46:05). The speaker provides thanks and resources before the Q&A, where he discusses recommended interventions, various treatment concepts, how behavioral education programs impact autism neural structure, and much more (48:20).