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To My New Insurance Company, From the Mom of a Son With Autism

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Dear New Insurance Company,

Last Friday I went to pick up one of my son’s prescriptions. He takes three different medications to help manage the symptoms of his ADHD and autism. When I got to the pharmacy, I was surprised to find out there was an issue.  The pharmacist told me I needed to contact my son’s developmental pediatrician for authorization.

I didn’t understand. Isn’t the fact the doctor wrote the prescription authorization enough? They told me I could pay for it out of pocket — $400.00 for a one-month supply. I said I’d contact his doctor and I was sure they would handle it. I called the doctor and left a voice mail. It was Friday afternoon so I knew they probably wouldn’t get back to me until Monday.

My son had two pills left and three days in between. My husband and I decided he’d take one on Saturday, a day we had a birthday party to go to and one on Monday, an ABA therapy day, and he’d skip Sunday. I assumed this would be easy to remedy come Monday morning. I should realize nothing in the world of autism or insurance is ever easy, and combining the two can often be a recipe for disaster.

Monday morning the doctor’s office called and said they contacted the pharmacy who told them to contact you, the insurance company. You told my son’s doctor you would not cover the medication she had prescribed my son and offered a different, alternative medication. How do you have the authority to override a prescription my son’s doctor said he needs?

You aren’t a doctor. You’ve never laid eyes on my child. You don’t know that it took more than six months of medication trials before we landed on a medication that worked. You don’t know the myriad of side effects the wrong ADHD or ASD medication can have on a child. You don’t know some of the medications he tried made him stop eating. You don’t know that some of them made him so drowsy he couldn’t stay awake more than a few hours. You don’t know that some of them made his already high anxiety even higher, resulting in self-injurious and aggressive behavior. You don’t know that he eventually had to undergo genetic testing to find which medications would have the best chance of offering positive results so we could stop putting him through these awful trials. You don’t know any of this, but you know who does? His doctor.

His doctor knows that once we finally found the right medication, my son began to speak in sentences for the first time. She knows I finally I heard the words “I love you!” She knows the right medication caused his self-injurious and aggressive behaviors to lessen.  She knows he finally began to eat again. She knows he began to progress rapidly in his speech and ABA therapy. She knows that for the first time my son was able to sit in my lap and listen to a story.  She knows that the right medication brought my son back to me.

You couldn’t possibly know any of this, because if you did there is no way you could look me or my son in the eye and tell us you were not going to cover this medication. His link to life.

I spoke with at least six people over a two-day period before I reached a resolution with you. You eventually said you’d cover the medication, but not in the form my son was prescribed. He had to switch from a dissolvable tablet to a liquid. Great! But why did it take hours and days on the phone with you to come to a solution?

I pay a very high premium for your service. Aren’t you supposed to be an advocate for my family? Aren’t you supposed to help? Why am I having to constantly jump through hoops ablaze and painstakingly peel away layers of red tape to get my son the services and medications he needs? I feel like you try to make things so difficult so I’ll just go away. But I am an Autism Mama. I am going nowhere.

“Autism doesn’t come with a manual. It comes with a parent who never gives up.” – Kerry Magro

Getty image by Antonio Guillem.

Originally published: June 18, 2019
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