By Adriane Miliotis, MA, BCBA, LBA and Kate McKenna, MEd, MSEd, BCBA, LBA
Association for Science in Autism Treatment
Families with children with autism face a myriad of challenges including finding clinicians qualified to make a diagnosis, arranging appropriate services for their children, coordinating with educators and related service providers, and transitioning to a school placement that will provide ongoing educational support. For military families, these challenges are compounded by additional hardships, including frequent relocation and the deployment of family members – which in many cases means that a spouse or other family members must manage the many issues that arise on the “home front” on their own (Organization for Autism Research, 2019). Just like civilian families, many military families have turned to applied behavior analysis (ABA) to educate and treat their children with autism.
ABA is considered the “gold standard” treatment for autism based on decades of rigorous scientific research (Steinbrenner et al., 2020; Wong, 2015) that demonstrates its effectiveness with individuals on the autism spectrum. ABA is endorsed by numerous national professional medical associations, such as the American Academy of Pediatrics (Hyman et al., 2020), the Surgeon General of the United States and the National Autism Center. Parents often describe ABA as “life changing” and credit the work and support provided by behavior analysts in teaching their children critical socially significant communication, social, academic, and daily life skills, that produce benefits such as the ability to attend a mainstream school, acquiring the social skills necessary to form friendships, and the hope that their child could one day live independently.
Since 2014, military families have been able to access ABA services only through the TRICARE Autism Care Demonstration (ACD). TRICARE is a health care program of the United States Department of Defense Military Health System. Demonstrations are used by several federal departments and are designed to evaluate the ongoing effectiveness of a program. According to the Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020, in Fiscal Year (FY) 2019 (the most recent year for which data are available) almost 16,000 children of active and retired duty military personnel participated in the ACD. Today, as a result of that report, which draws the conclusion that “the current format of the ACD, and the delivery of ABA services, is not working for most TRICARE beneficiaries” (p. 24) and others, all 16,000 children are in danger of losing their ABA services.
Each year, the Department of Defense (DoD) prepares a report for Congress on the ACD. Since 2019, these reports have misused and mischaracterized data to build a case that ABA is ineffective (Larsson, 2021). The primary measure of effectiveness used by the DoD is the PDD Behavior Inventory (PDDBI), a highly regarded medical tool created by Dr. Ira Cohen. However, due to “incompetent interpretation and analysis” (Cohen, 2020, p. 2), the DoD has built a case based on skewed data to tell congress that ABA doesn’t work.
In a Technical Report prepared for the National Coalition for Access to Autism Services (NCAAS), Dr. Cohen himself reviewed the DoD’s reports and concluded that the DoD misused the PDDBI assessment tool (Cohen, 2020). One example he cites includes data from The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to Congress, Fourth Quarter, Fiscal Year 2018 in which the DoD discarded 90% of the 14,700 patient assessments in the original test sample saying that there was missing information and subsequently drew conclusions from only 1,577 children. On this flawed data, Dr. Cohen notes “the most glaring is the total lack of understanding as to how the PDDBI is scored and interpreted and the obvious failure to read the manual. This led to the elimination of vast numbers of cases, many of whom may have been responders, because of the incorrect assumption that a score of “0” means that the item was ‘missing’. Instead, it means that the behavior was not seen.” (p. 3)
Dr. Cohen found similarly flawed data in all six reports prepared by the DoD and sent to Congress from FY 2018 to FY 2020[1] on the ACD, calling into serious question their conclusion that military children with autism were not making progress with applied behavior analysis. According to Dr. Cohen, the results “cannot be justified due to profoundly serious limitations” with how the PDDBI was scored and how the resulting data were analyzed (p. 3).
However, DoD continues to push the false narrative that ABA is ineffective, claiming, “Overall, the majority of beneficiaries experienced little to no change in symptom presentation…[and] a small percentage of beneficiaries were noted as having worsening of symptoms.” (Department of Defense, 2020, p. 17). Why? According to David Fuscus, spokesperson for NCAAS, it appears that money may be a driving factor to reduce services: “The tone and language of these reports and the focus on program costs make it clear that DoD is trying to abolish this pediatric autism program and deprive military families of a gold standard treatment that is widely accessible to civilians. The Department of Defense and TRICARE clearly want to substitute something less effective, and less expensive, than applied behavior analysis.” (Autism Services for Kids, Defense Department Campaigns to Cut Autism Services for Children, para. 9)
In response to this threat to services critical to our military families, Autism Services for Kids (ASK), a coalition of groups and individuals dedicated to preserving access to autism treatment services for military children with autism, has created a website that provides information about the DoD’s misuse of data and the ongoing campaign by ASK to safeguard ABA services for military families. The ASK campaign, designed to stop DoD from discrediting a proven and effective treatment for children with autism for financial reasons, is sponsored by NCAAS. The Coalition’s goal is to ensure that military children with autism have access to ABA treatment under the DoD’s healthcare provider, TRICARE.
In the “news section” the ASK website provides current media coverage of the efforts of the DoD and TRICARE to severely limit autism-related insurance coverage for military families and resulting disruptions to education for children and the financial and emotional impacts that will result. The history of DoD’s efforts to avoid the expense of a proven, evidenced-based treatment for autism is outlined. There is also a link to sign a petition requesting that TRICARE and the DoD respond to calls to reevaluate the survey data and revise recommendations that could create barriers to obtaining ABA services.
The Association for Science in Autism Treatment (ASAT) firmly believes and affirms that every individual with autism has a right to safe, effective, and science-based treatments. By manipulating data to falsely claim that ABA, an expensive yet proven treatment for autism, is ineffective, the DoD is jeopardizing the lives and futures of thousands of military children and their families. If the DoD continues to present this misinformation campaign to Congress, military families are in danger of losing access to ABA.
Furthermore, if the DoD’s falsified data is seen as credible and begins to spread outside the halls of Congress, the threat to families impacted by autism increases exponentially. According to Mr. Fuscus, “Our providers out there are starting to hear, anecdotally, that insurance companies outside the military, outside TRICARE, are now looking at TRICARE’s work, their research on this and their reports to Congress, and a real fear is that this anti-ABA sentiment based on ‘cooked books’ is going to spread out into the general insurance population.” (Giacomelli, 2021, para. 27). Such an outcome could have a detrimental impact on hundreds of thousands of families, both civilian and military, impacted by autism.
ASAT stands with both ASK and NCAAS in their commitment to advocating for access to effective autism treatment. We applaud their work to ensure that children with autism in military families have access to ABA and encourage everyone concerned about DoD’s actions to learn more about the work of these two organizations.
Citation for this article:
Miliotis, A., & McKenna, K. (2021). Autism services in jeopardy for thousands of military families. Science in Autism Treatment, 18(8).
References
Autism Services for Kids. Defense Department Campaigns to Cut Autism Services for Children. https://saveautismservices.org/
Cohen, L. (2020). Technical report to the National Coalition for Access to Autism Services (NCAAS): Department of Defense reports to the Congress regarding the Autism Care Demonstration (ACD) projects’ use and analyses of the PDD Behavior Inventory (PDDBI). Author
Department of Defense. (2020). Report to the Committees on Armed Services of the Senate and House of Representatives: The Department of Defense comprehensive autism care demonstration annual report 2020. Author.
Giacomelli, E. (2021, April 14). Analysis: DOD reported ‘flawed’ data to Congress about autism therapy. NNY360. https://www.nny360.com/
Hyman, S. L., Levy S. E., Myers, S. M., AAP COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS. (2020). Identification Evaluations and Management of Children with Autism Spectrum Disorder. Pediatrics.145(1):e20193447. http://pediatrics.aappublications.org/content/early/2019/12/15/peds.2019-3447
Larsson, E. (2021, June 30). Autism services for Texas military families could be cut under DoD. Fort Hood Herald. https://kdhnews.com/fort_hood_herald/
National Autism Center. (2015). Findings and conclusions: National Standards Project, phase 2. Author.
Organization for Autism Research. (2019). Life journey through autism: A guide for military families. Author.
Steinbrenner, J. R., Hume, K., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy-Özkan, S., & Savage, M. N. (2020). Evidence-based practices for children, youth, and young adults with Autism. The University of North Carolina at Chapel Hill, Frank Porter Graham Child Development Institute, National Clearinghouse on Autism Evidence and Practice Review Team.
United States Surgeon General (1998). Mental health: A report of the Surgeon General. Washington, DC: Author. http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism
Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kurcharczyk, S., Brock, M.E., Plavnick, J.B., Fleury, V.P., & Schultz, T.R., (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders.45(7), 1951-1966. doi: 10.1007/s10803-014-2351-z
[1] Report to Congress: The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to Congress Fourth Quarter, Fiscal Year 2018
Report to the Committees on Armed Services: The Department of Defense Comprehensive Autism Care Demonstration Annual Report June 2019
Report to Congress: The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to Congress Second Quarter, Fiscal Year 2019
Report to Congress: The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to the Armed Services Committees, Third Quarter, Fiscal Year 2019
Report to Armed Services Committees: The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to Congress, Fiscal Year 2019
Report to the Committees on Armed Services of the Senate and House of Representatives: The Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020
