Saturday, January 1, 2011

The Scarlet Letter A

Most children with autism have sensory processing disorder. But not all children who have sensory processing disorder have autism. My son is one of the latter ones. It took awhile to make sure that Ryan did not have autism though. It took a year of testing and waiting. A lot of waiting. There was a six month waiting list to get him tested in the first place. Then they tested him and wanted to see him in another six months to see how his social pragmatic skills were coming in.
The year that we were waiting for the final word, I was just trying not to panic. I knew that if Ryan had autism he would still be the same exact boy I brought into the clinic before his appointment. He would not magically change from the second before they told me he had autism to the second after they told me. He would still be my beautiful boy. I was just dealing with the idea of this label that would be put on Ryan. All I could think of was that all anyone would see when they looked at my son was a giant scarlet A on his chest. All his teachers would get a paper at the beginning of the year that said autism before they even got a chance to meet Ryan. I did not want my son to be judged.
As I look at Ryan now I am glad he does not have that label. He is doing great in school. Labels are both good and bad and I know I struggled with them for a long time. At one hand the label allows your kid to get the help they need. But on the other hand, a label can put your kid in a box. People can prejudge them and assume they know all about your kid before they even meet them.
The first person who really mentioned autism to me was Ryan's doctor. I was 9 months pregnant with my daughter (I had her exactly one week later) and the doctor sat us down and explained that they thought Ryan had autism and we should get him tested. Of course being about ready to pop I started crying. The doctor keep handing me tissues and asking me not to cry. A week later when she came to the hospital after I had Kate she looked like she wanted to hide in a closet when she saw me there. I just keep thinking about how crushing that label would be for Ryan. But I also knew that I had to find out and get him the help he needed to be successful in life.
The day of the appointments were the most nerve-wracking days of my life. I was sick to my stomach and literally shaking the whole 45 minute drive to the doctors office. I sat there as they asked Ryan questions and silently prayed he would answer them right. I cringed everytime he got one wrong. When they officially told me it was just sensory processing disorder and not autism I know I had a huge smile on my face. I remember feeling lightheaded because I was so happy. No mother wants to hear their kid has autism.


  1. We were in the same boat with my daughter- there was the does she or doesn't she for autism, then Williams Syndrome and a few others. She thankfully has none of them but it has been the most stressful 2 years! Before I got the results I would try to prepare myself for what they were going to tell me because the way they would talk was 'we need to confirm' so in my mind it was a yes. I for sure think doctors need to be more careful about these types of things and how they word them to parents!

  2. Hi Lindsay,
    I found the whole process very confusing and frustrating also. I think doctors do need to be careful how they word things. Mine had a deer in the headlight look. I wish you and your daughter the best.