By Cara-Lee Alford
Military children face unique challenges that require further consideration by the Department of Defense (DoD) when deciding the future of the critically needed coverage of Applied Behavior Analysis (ABA).
As a military spouse of 17 years, and mom of two children on the spectrum it was deeply upsetting to me to learn that the DoD has concluded that military children are not being helped effectively by ABA (Applied Behavior Analysis) therapy.
As a mother of children who utilize this therapy, I strongly disagree.
The DoD evaluation process does not appear to include all stakeholders, like military family members, or appropriate experts in the decision process. But more disconcerting is that the DoD does not seem to be taking into consideration the differences between civilian children and our military children. So many questions are left to be asked by families like my own, but there is no formal process to ask these questions or provide feedback.
ABA therapy has been my children’s lifeline in a world that does not understand them and requires them to adapt. My kids have unique minds that learn in unique ways. ABA has taught us as parents how our children think, how to help them, how to connect with them and draw them out of themselves. ABA has taught our boys how to communicate verbally, coping methods for the overwhelming stimulus they are bombarded with every day, and basic skills that neurotypical or “normal” kids learn without help but that autistic children must be painstakingly taught step by step.
Military special education students struggle
In February 2020, I attended a Congressional hearing about the Exceptional Family Member Program (EFMP). It was clearly established that military children with special needs face barriers and there have been delays in receiving a fair and appropriate education. Because of this, they have had less access to supports compared to civilian children on the spectrum. The question remains, based on this hearing, has this been accounted for in the evaluation of their progress against a basic standard?
Progress metrics for military children need to be evidence-based. Measuring their progress against the comparatively stable circumstances of civilian children on the spectrum is like comparing apples to oranges. Showing less progress does not necessarily mean that ABA therapy is not effective for my kids. It means that my kids are getting the help they need through difficult circumstances and not falling even further behind because we have ABA training on ways to help them. The lack of progress is more attributable to the gaps in service and significant disruptions common in military life.
Military PCS moves with autism
My children thrive on routine which is completely disrupted by many aspects of military life. When we move, my kids, six and nine years old, lose skills. They stop eating many foods and we have to painstakingly reintroduce them one at a time. It can take months just to add back a single food. We have had to start over with skills such as using words instead of pointing and vocalizing to get what they need. Problem behaviors resurface and new ones arise and have to be dealt with. During one move, my oldest son developed an issue where he would meltdown if we did not tape his straw wrapper together before we threw it away. It took six months before the behavior was eliminated. While civilian children move forward, my kids had to cover the same ground over and over.
When we move it takes about a year to get established with most providers and be at a point where things are running smoothly and moving forward. The delays stem from getting referrals, waitlists for providers, and then time to get settled with these providers. It takes between one and three months just to get a first appointment with their new primary care physician. Until we see them, we cannot even get on a waitlist with most other providers, even when we know where we are going six months before a move.
Once we are finally able to get on wait lists with their other providers, waits range from three to 12 months, ABA being on the long end of that range. Some specialists have two year wait lists. We have been waiting to see a Developmental Pediatrician for over three years now because we moved before we got off the waitlist at our previous base. We typically need around 25 referrals, requiring appointments, evaluations and assessments, which often means missed school.
Keeping in mind autistic children tend to be slow to adapt to change, they have to build trust and a working rapport with each new doctor and service provider which is emotionally exhausting and slows down progress as well. My kids will not cooperate with new providers until they get used to them. On average my children interact with 12 regular providers each, on a weekly basis, ranging from therapists to teachers. Those relationships take time to build, and sometimes they do not work and we have to start over with someone new.
There are solutions!
I cannot express strongly enough the importance of fairly evaluating ABA service efficacy. Not only should the DoD NOT remove these needed services, they should expand them.
- Fair evaluations of progress for highly-mobile kids
- Legal assistance to help with “reluctant” school districts
- Pay special needs providers the market rate – Not doing so reduces the providers’ willingness to take on military clients, making our wait for providers even longer.
- Reinstate coverage for community outings. Our kids have to function in the real world. They need real-world practice with their ABA support.
- Allow current providers to maintain virtual care during PCS move transitions until new services are available
- Allow sending providers to make referrals out of state so we can get on waitlists!
There is a saying, “if you have met one person with autism, you have met one person with autism.” Every military family will have their own unique challenges. For my family, ABA has been life-changing. We depend on it, and my kids thrive because of it. Because of ABA we can go on outings and my oldest does not run away. He can now communicate even while melting down to tell us what he needs so we can help him. He doesn’t freeze up when he makes a small mistake and needs to start over. My six-year-old son can express when he is in pain now. Recently he learned to tell us when he is hungry. There are hundreds of skills they have learned that most people would never even think of.
I am grateful every day to be part of this military family, and to have access to everything our children have needed through TRICARE. Our kids are stronger and wiser because of all the experiences this life has given them. So please, continue to support kids like mine by including autism experts in the evaluation of our children’s progress and including families in the conversation. They know how to use the assessment tools and what things don’t show up on those tests. And finally, I am asking the DoD to please give families like mine an interactive platform to be a part of these determinations, to express concerns and share our experiences.
Cara-Lee Alford is the mother of three children, ages nine, six and three. She has been married to her husband for 19 years. He has served on active duty for 17 years, the majority of which with the Air Force, having recently transferred to the Space Force.