In 1998, our son, Hayden, was diagnosed with “atypical autism.” After recovering from the shock, my husband and I inundated ourselves with information, desperate to provide our thee-year-old boy with whatever might help him lead a relatively normal life.
We embarked on a home therapy program called “Floortime,” a type of play therapy developed by Dr. Stanley Greenspan, in which the a primary caregiver, often a parent, follows the child’s lead while opening and closing “circles of communication.” The thought was that Floortime helped children who hadn’t met necessary milestones for social-emotional growth which affected their ability to relate and communicate.
A few civilian friends I knew with autistic children were paying for Applied Behavior Analysis (ABA) therapy, which rewards positive behaviors during task oriented sessions conducted 20 to 40 hours per week by trained ABA therapists. Back then, most insurance companies did not cover autism therapies which were considered “experimental” or “not medical in nature.” At that time, I didn’t know any military families who could afford ABA.
Although I believed that Floortime would be more effective than ABA for Hayden, I also had no choice but to pick the therapy that I could do myself. ABA was done by paid professionals, so it was out of the question. But Hayden’s doctor also prescribed physical, occupational and speech therapies, as well as special diets, evaluation by a nutritionist, and regular doctor’s appointments. Like other insurance carriers, Tricare did not recognize autism as a coverable diagnosis, but offered a small financial supplement for certain individual symptoms that significantly impaired the “activities of daily living” through its Program For Persons With Disabilities (PFPWD), now known as Extended Care Health Option (ECHO). Hayden’s autism profile included a speech disorder and motor planning delays which qualified, so we received a small stipend each month to pay part of the speech and occupational therapy bills.
As for the rest of Hayden’s autism symptoms, we were financially on our own. We paid for expensive liquid nutritional supplements since Hayden’s sensory imbalances made him reject many food textures and tastes. We paid for expensive mail order flours and consultations with a specialized nutritionist when Hayden’s doctor ordered a gluten-free, casein-free diet. (Gluten-free foods were not prevalent like they are today.) After applying the money received from our monthly PFPWD stipend, we paid the thrice-weekly speech and occupational therapy bills. We paid to see a developmental psychiatrist once or twice a year to the tune of $500 a pop, and a psychologist who trained us in Floortime at $250 per session.
But like many parents of children with autism spectrum disorder who desperately hoped for progress, we were more than willing to go into debt if we thought it would help our son. And go into debt we did. In a big way.
As a Brookings Institute fellow astutely observed in 2008, “Many military families choose to pay for medically prescribed autism treatment themselves, to the extent possible, and incur significant debt. This unduly burdens already stressed families, which often have one parent deployed abroad these days.”
By age nine, Hayden had made so much progress, his autism diagnosis was downgraded to “regulatory disorder,” and although he still struggled with social delays and sensory processing, he no longer needed intensive therapies.
Ironically, at the very same time there was a movement to reform autism insurance coverage in the US. Although Tricare considered ABA therapy to be “educational rather than medically necessary,” it began allowing families to use the monthly ECHO supplement to go toward limited ABA costs. Then in 2007, US states began passing laws requiring insurers to cover autism. And finally, in July 2014, Tricare began fully covering ABA and other autism treatments through its Autism Care Demonstration program which will remain in effect through December 2023.
Although Tricare still considers its program to be “experimental,” it has been forced to change its policies toward autism significantly. When Hayden needed treatment, autism wasn’t recognized as a coverable diagnosis. Two decades later, 48 states have mandated autism coverage.
The system is certainly not perfect, but it’s come a long way, baby.
Links:
http://www.autism-help.org/intervention-floor-time-dir2.htm
https://www.stanleygreenspan.com/
https://www.autismspeaks.org/applied-behavior-analysis-aba-0
https://www.appliedbehavioranalysisedu.org/what-is-aba/
https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm?s_cid=ss6706a1_w
https://www.brookings.edu/opinions/the-pentagon-and-autism/
I learned so much from Hayden! Your family did so much to get him where he is today! So proud of all of you 🙂
Thank you so much — we’re so proud of Hayden!