We’ve come a long way with autism awareness

by Lisa Smith Molinari
The Meat & Potatoes of Life

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 3-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 milestones for social/emotional growth and communication.

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. 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 that qualified, so we received a small stipend each month to pay part of the 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.
 
Like many parents of children with autism spectrum disorder, we were more than willing to go into debt if we thought it would help our son. And go into debt, we did.
  
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 9, 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.

At the same time, there was a movement to reform autism insurance coverage in the U.S. 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. In 2007, U.S. 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 changed 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 still isn’t perfect, but it’s come a long way.

Read more of Lisa Smith Molinari’s columns at: themeatandpotatoesoflife.com 
Email: meatandpotatoesoflife@googlemail.com

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