Dear New Insurance Company, Why? From the Mother of an Autistic Son

Dear New Insurance Company,

My autistic eight-year-old son has been in behavior therapy since he was three. Before he started, his daycare had kicked him out. He had no friends. He engaged in aggressive and self-injurious behaviors. He melted down over the slightest disruptions to routines. He couldn’t tolerate new environments. I didn’t know how to fill his big needs. Our family was in chaos and I felt like a failure as a parent.

Then, finally, we found hope through a wonderful team of behavior therapists. With their support, we started going for short outings to places like grocery stores and playgrounds. Eventually we were enjoying restaurants and visiting theme parks. He started public school and made several great friends. Sure, there were always issues we needed to work on, but with their support our family was thriving.

Three weeks ago, a change of insurance severed that lifeline.

On my first visit to my podiatrist after the switch, a billing clerk made the change in about ninety seconds. At the pharmacy, a tech scanned in our new insurance card, and my husband left with his medications. Not a hitch for either.

But that’s not my son’s story.

The day the insurance switched, his therapy stopped. The therapy company reached out to you to minimize the gap in his services. That gap’s now large enough to swallow our family whole.

I don’t understand why my podiatrist and the pharmacy were able to make the switch with no disruption in services or prescriptions. It was instantaneous. But for the therapy my son requires for him and our entire family to access the world, it’s been three weeks with no end in sight.

Do you have any idea how quickly an autistic child regresses without support in place? Progress can take months, even years. Regression happens in days.

Please, New Insurance Company, my family is depending on you.

Thank you,

Barclay’s Mom

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Amy Nielsen

Amy Nielsen is a Senior Literary Agent at The Purcell Agency. She is also an autism advocate and author. Her works include Goldilocks and the Three Bears: Understanding Autism Spectrum Disorder, It Takes a Village: How to Build a Support System for Your Exceptional Needs Family, and her young adult debut, Worth It. She is also a freelance editor and caregiver coach helping families navigate the early days of an autism diagnosis. When not reading or writing, Amy and her family can be found boating the waters of Tampa Bay.