It's Just a Label

People often ask me what was it like when Johnathan was given the label of autistic. I always find myself thinking it was just a label. It does not define my child, it does not change the way I feel about him, and he doesn't need cured because it isn't a disease.

Johnathan was 3 years old when he received the educational label of autistic. By the time he received this label we had already seen the signs that he had autism. His repetitive motions, speech delay, and lack of social cues and interaction were easily noticed by us. Still seeing the phrase placed on his IEP was an emotional experience.

What some people may not know is there is a difference between an educational and medical labels of Autism. An educational label is only recognized in the educational system and determines what services and classroom structure is best. To further ensure Johnathan would receive the services he needed not only in the school setting but also in his life we decided to have him tested for a medical diagnosis.

This process was a two step process and was done when he was 4 years old. First we had to do the step one testing. This testing involved the testers meeting Johnathan and mostly just observing him during a play assessment. Not surprising it didn't take them them long to see the same signs we had been observing for quite some time. We scheduled the next test but due to their full schedule we weren't suppose to come back for 2 months. Imagine our surprise when not even a month later we got in due to a cancellation.

Testing number 2 was more intense and involved 4 different assessors working with Johnathan during the testing. The worked in groups of two engaging him in different play assessments. While this was happening the other assessors observed him to. As I sat and watched these assessments I had so many different thoughts going through my head. When he successfully completed a task and wanted to cheer and start to think maybe the autism wasn't as extreme as we were lead to believe. Then I'd watch him not be able to complete an assessment or use unconventional play methods. When this happened I'd plead in my mind that the assessors would see this as a sign that we needed this medical label to ensure he'd receive the needed services. At the end of his testing once again the label of autism was given.

So now we had an educational and medical label of autism and it was time to decide what we would do with this diagnosis. I wish I could say that getting these official labels changed everything for the better. It's not that simple though. Instead it just begins you on a long journey of deciding what services, therapies, and school setting will be the best resources for your child.