So many words come to mind when I think about autism. If you were to ask me what word I would use to describe my son’s autism, it would be “mystery”.
I Googled the definition and specifically it means “something difficult and hard to understand or explain”. There have definitely been hard and unexplainable times during my son’s autism journey.
I’m sure there are more to come; however, when I think about the word “mystery”, I find it to be such a beautiful word. I say that because time after time my son has proven to be unexplainable and authentic.
Last year my son was referred to a geneticist. The purpose and overall goal of the appointment was to find out the “reason” he is autistic.
The first thing I said to the nurse is the results will either be something off the chart or we will not ever know the reason for his autism. She smiled and said okay. She asked questions about me, his father, and both sides of our family. Our son’s blood was drawn to run a series of test.
A few weeks later we came back for a follow up and to discuss the results of the testing. I don’t recall the name of the gene but, they discovered that there was a mutation. I asked the nurse what that meant and she said she didn’t know. She said there weren’t enough studies/ research to know why that particular gene mutated. I reminded her of the comment I made a few weeks prior.
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She looked at me and said you were right. I asked what we should do from here. She said that we can continue testing or stop. Her recommendation was to discontinue and I agreed. She reassured me that I’m doing all that I can possibly do for my son at this point.
Since my son was born I always felt disconnected. I never could understand why I just couldn’t bond and develop our own personal relationship. Don’t get me wrong, I loved him before I laid eyes on him, I loved him because he was my child.
For a little over a year. I felt that way until his diagnosis. Before knowing about his autism, he would have weird and unknown medical scares.
It would just drive me crazy why things would randomly happen with him. I felt after his diagnosis the unknowns and the unexplainable things that occurred with him, finally had an answer. That’s why “mystery” is the word I use to describe my son. That word will forever remind me of all the progress and advances he has made. It gives me hope and encouragement to never give up, to keep fighting, and never stop believing in him.
I encourage you to find a word that describes your child. Use it for encouragement and strength. Autism has so many layers and as a parent you want to peel back every layer and find that answer. I have learned that the hard, difficult, and unexplainable is okay. So I ask you, what is your meaning of autism?
This article was featured in Issue 102 – Supporting ASD Needs Everyday