The Diagnosis Is Not the Outcome

When we were sitting in the waiting room for my son Joseph’s appointment to determine what his official diagnosis was back in 1996, it felt more like meeting with a wizard who would tell us what our future was going to be. Will we have a bright future raising our genius son, or will we have a dark heartbreaking one watching our son live a lonely life of rejection?

It felt like our happiness was going to be decided within the next hour. The doctor we found was a behavioral psychologist with twenty years of experience diagnosing children who were displaying autistic like behaviors and were developmentally delayed. She came highly recommended with high praises from the medical community. 

The pre-work we did gave me confidence that we were in the right place for our son. We were asked to video our son in as many environments as possible. For example, home, preschool, grocery store, family gatherings, one on one play, and peer interaction. We also filled out observational paperwork that went back to Joseph’s infancy. Luckily, I kept a detailed daily journal of most therapy days, preschool days, and his advanced and delayed child development. 

It was very confusing to me to see signs of a genius and signs of a developmental disability. This was in 1995 when autism was a dark life sentence. Granted, it isn’t a great diagnosis now, but we knew very little and living an independent life was not part of this diagnosis. 

My heart skipped a beat when our name was called to see the doctor. We walked into her office and sat down to begin Joseph’s evaluation. As I looked around, I noticed that her office looked more like a playroom than an office. She had all types of different toys set up all around. There was a small table with blocks and a play area that had a soft carpet for Joseph to sit on, and he instantly began to play with the different colored wooden blocks.

As Joseph entertained himself we began to answer several questions that Dr. Mobley had about the recorded videos that she viewed. She then began to explain the evaluation process that she was going to do with our son. We were allowed to stay in the room to observe as she began to interact with Joseph. 

I was really nervous for many reasons as I sat and watched my son answer questions that Dr. Mobley asked him. It was hard to tell if he was doing well or failing the evaluation. I was surprised that it didn’t take very long. It must have been 15 to 20 minutes and Dr. Mobley popped from the floor and sat down and gave us her professional diagnosis. 

She shared that she believed Joseph had PDD-NOS. Pervasive Developmental Disorder, Not Otherwise Specified. She explained that he would struggle socially and would need services to help him with his speech delay and occupational therapy for his other developmental delays. She also explained that autism was a spectrum and that Joseph was on the highest functioning tip of autism. She looked very hopeful and presented this information positively. So why did I feel relieved and sad all at the same time? 

I was devastated because deep down inside I was hoping that she would say he was definitely not autistic. Although there was some hope in her words, it felt like we had a very long road ahead of us. 

Everything felt scary. Questions that could not be answered swarmed my mind. Will Joseph have friends? Will he be able to have a conversation one day? Will he be able to function in this world that does not accept differences? Who will take care of Joseph when I am gone? 

So, we had a diagnosis, but it really left us with more questions than answers. I accepted the diagnosis of PDD NOS, but I realized that although I understood what it meant, I still didn’t know what our long-term outcome was going to be. 

I just remember being so exhausted and feeling like I just needed to keep going to find the answers to all of my questions. I could not rest until I knew my son was going to thrive in this life. To be honest, I didn’t really even know what that looked like at that moment. I just knew that I was going to keep researching, keep working, and give all of me to my son. 

I wish I could have had a crystal ball to look into at that moment. All I wanted to know was that one day my son would be healthy, happy, and living his own life independently.

Fast forward to 2021. Joseph is driving, working, and independent. Even with the very best diagnosis of being high functioning on the autistic spectrum, the diagnosis did not offer us the hope that I so desperately needed. 

Whatever your child’s diagnosis is, know that it does not determine the outcome of your child's life. You will hear many opinions of what professionals will tell you what they believe your child’s life will be one day. Most of what I was told at that time was not positive. It was not ever mentioned to me that Joseph might be a happy, independent young man one day.

I know that I had the power to help my son live the very best life. There is hope in your future. If you can’t find hope today then I am offering you hope in my story.

Your child is an individual who has gifts and purpose to offer this world just as we all do. You may not be able to see the sun shining behind those dark clouds as you receive a diagnosis, but just remember the sun will peek out when you are ready to see it. 

Accepting autism is not a life sentence, it is an opportunity to learn, teach, grow, and to view life in the most extraordinary way.

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