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Future Research Claims & Questions Parent choice

Future Research

There is a need for continued research to evaluate the effectiveness of treatment. Current needs include studies which are long term, evaluate children based on individual profiles in addition to diagnosis, older children and children at higher levels of function.  Studies would benefit from further description of treatment strategies, and differences in parent styles as well as children’s abilities.

Future research will also be informed by genetics, new technologies to track complex patterns of interaction, and direct measurements of brain function. Autism is now understood to involve differences in the integration of various distinct brain functions. Developmental intervention is based upon the use of affective interactions to enhance integration of sensory-regulatory, communication and motor systems.  Neuro-imaging techniques may be used to show how intervention changes brain function.

Undoubtedly, researchers will continue to refine our understanding of developmental differences, and how to best support child development to achieve the optimal long-term outcome.

 

Claims & Questions

Sweeping claims have been made about the effectiveness of behavioral approaches, specifically ABA. However, there continues to be reservation about the strength of evidence for addressing the core features of autism, and long-term success. The review by Sandbank referenced above, states, “Behavioral intervention approaches also show evidence of effectiveness, but methodological rigor remains a pressing concern in the area of research.”

Eric Shyman authored a book, Besieged by Behavior Analysis for Autism Spectrum, which details the history of use and concerns with ABA for autism.

Shyman, E. (2014). Besieged by Behavior Analysis for Autism Spectrum Disorder: A Treatise for Comprehensive Educational Approaches. Lexington Books.

In 2017, Laurent Mottron in Quebec, Canada authored an article that questions the underlying basis of ABA and the efficacy of ABA approaches in early intervention. The article provides references to other articles that raise concerns about ABA and offers recommendations for alternative approaches.

Mottron, L. Should we change targets and methods of early intervention in autism, in favor of a strengths-based education?. Eur Child Adolesc Psychiatry 26, 815–825 (2017). https://doi.org/10.1007/s00787-017-0955-5

Researchers have questioned the criteria used to determine Evidence-based Practice, and in particular note that when rigorous criteria is used there is inadequate support for ABA.

Bottema-Beutel, K. (2023). We must improve the low standards underlying “evidence-based practice”. Autism, 27(2), 269-274.

The 2024 annual report of the Autism Comprehensive Care Demonstration Program, provided through Tricare, the insurance program for the US Department of Defense, reported the results of their monitoring of ABA services. At the end of 2022 they had 16,156 children enrolled, and studies a sample of 497.  Tricare submits annual reports which provide a detailed analysis of the ABA services that are provided.

Of note:

Previous annual reports have discussed the status of the research literature regarding ABA services. While DHA continues to monitor the literature, there have been no significant advances in the ABA research with regards to defining dose-response (including intensity, frequency, or duration), for whom ABA is most effective, and what clinical outcomes could be expected as a result of ABA interventions. As of now, ABA services do not meet the TRICARE hierarchy of reliable evidence standards for proven medical care.

Comprehensive Autism Care Demonstration Annual Report January 2024

https://health.mil/Reference-Center/Reports/2024/01/08/Annual-Report-on-Autism-Care-Demonstration

As insurance companies are questioning the time, cost, and effectiveness of behavioral approaches, academic scholars are also increasingly reconsidering the basis and outcome of accepted practice.  The voices of adults with autism have contributed to this reexamination of intervention methods, with questions about ethics, values, and self-identity.

 

Parent choice

Part of the definition of “evidence base” is clinical experience and expertise. While research efforts continue to explore the etiology, biology, and efficacy of treatment approaches for autism, clinical experience also continues to accumulate.  DIR/Floortime programs have high family satisfaction ratings and are widely utilized throughout the world as an effective framework for assessment and intervention.

A review by the National Institute of Mental Health (NIMH) states, “There is no single best treatment package for all children with ASD.  Decisions about the best treatment, or combination of treatments, should be made by the parents with the assistance of a trusted expert diagnostic team.”

NIMH. (June 2, 2009). Autism Spectrum Disorders (Pervasive Developmental Disorders. Retrieved June 8, 2009, from http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml

Because of the wide range of individual differences in children with autism, and the many unique relationships within families, it is necessary and proper for parents to have the information and options necessary to make informed choices about the type of services their child will receive. DIRFloortime has a solid base of empirical evidence and is widely used for children of all ages and abilities. Evidence-based practice means the clinician can utilize all types of information including clinical expertise, and a family’s individual values and preferences, in addition to published research. There is ample evidence for the effectiveness of DIRFloortime to support an informed parent choice.

Sandbank states, “States with insurance mandates that explicitly cover traditional behavioral interventions should furthermore revise their policies to include NDBI and developmental approaches given that these approaches have now accrued substantial evidence for effects in young children on the autism spectrum from recently published RCTs.”

Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., … & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1.