Getting a Formal Autism Diagnosis: Should We Have Waited?

by J

We began the process of determining S’s delays around 16 months of age. By 18 months, S qualified and was entered into the Infants and Toddlers Early Intervention Program in our county. At 21 months, he was given a formal diagnosis of Autism.

At the time, having the actual label seemed to benefit us, S’s parents, a great deal. It didn’t change anything for S, as the county addresses his delays no matter why he is delayed. His schooling and therapy sessions stayed the same, regardless of that label.  However, we thought having the formal diagnosis might open more doors for treatment for S in terms of insurance and that it would enable him to receive more help outside of what the county provides for him.

For us, as parents, that label was also instrumental in coming to terms with the fact that S has autism. I know that for me, it allowed me to formally acknowledge that this will be a life long affliction and that it was okay to grieve. You see, before the diagnosis, there was always the hope of ‘what if?’. I mean, the writing had been on the wall for a while and the diagnosis did not come out of left field. We knew something was off and autism seemed to fit the bill. However, since he didn’t have the diagnosis, the label of autism, there was always, maybe he is just speech delayed or what if he just prefers to play alone. Maybe… just maybe… he will grow out of it. And, since there was that glimmer of hope, it seemed silly to grieve over the process. After all, if he is not autistic, there is no sense in making a big fuss over nothing.

And while having a glimmer of hope is nice, it also keeps you from accepting the reality of the situation and processing what it means for your child and your family. When the formal diagnosis came, it squashed any glimmer of hope in just a few short words… “S has autism, and that will NOT change”. As heartbreaking as this was to hear, in some ways, it was relieving. Hearing those words simply confirmed what we already knew in our hearts; except now, now we were able to truly process the reality.

The diagnosis allowed us to grieve. We could cry. We could throw tantrums. We could be sad, angry, scared, hopeless and bitter. I felt that we were finally given permission to feel all of the feelings that we had been feeling for the past few months. With the diagnosis or “permission”, we were able to comes to terms with S’s condition.

We were able to accept autism.

Well, all of that was great. It was great until I quit my job (you know, the one that carried our medical benefits) and tried to apply for private insurance. Apparently, even if you are currently covered under group insurance, you can be denied for private insurance. My two year old (and my husband) are being denied health coverage for preexisting conditions. Oh, and let’s not mention that my coverage is quoted at over $850 a month. So, for now, we are on Cobra- which costs about as much as a mortgage payment. With Cobra, we have 18 months to find coverage or we will be without healthcare benefits. Someone please, tell me again how this system does not need reform?

So, now I am left to wonder… had we not pursued the diagnosis, would we be able to get insurance for S? There are programs out there that we think would benefit S, but I am scared to file any autism related claims on Cobra, for fear that those claims will be further used against us in the future. As beneficial for us, as parents, that label was, I really think it is hurting our son, and our finances, in the long run.

I know one thing for sure, insurance is a scam.