I am stubborn!
And, my wife is right…again! (I wonder how many times, throughout history, husbands have made this statement.)
For years, my wife has been telling me she is not convinced our son has autism, despite being diagnosed with it and displaying autistic characteristics. I’ve heard her say this and on some level, I’ve believed it, but have continued to treat him as if he is an individual with autism. After all, the experts (medical, education, and therapists) were convinced he is autistic and told us his behavior issues are because of autism, so why shouldn’t I continue to treat him this way?
The experts would tell us, “the reason he behaves how he does, doesn’t matter as long as we treat the behaviors.” And then in the next breath they say, “we need to know why he behaves this way.”
To be clear, we MUST understand the reason for behaviors, if we are to address them properly!
When telling others about our son’s diagnosis, my wife says, “he’s deaf-blind with a diagnosis of autism.” In turn, I have adopted this way of describing his diagnosis for the past few years and have recently begun researching his deaf-blind disability more fervently. The impetus for this research was in preparation for an IEP (Individualized Education Program) meeting with our local school district.
Our local education experts once again were pushing for his primary diagnosis to be autism, which meant they would be putting forth a program of services based on treating autistic behaviors. After some research, it became clear to me that we needed to change his primary diagnosis from autism, to deaf-blind. The behaviors displayed by an individual with autism and an individual who is deaf-blind, are so similar that most people (including experts) wouldn’t be able to tell the difference.
Deaf-blindness is a separate and unique disability requiring separate and unique services, treatments, and adaptations for the individual.
As his father, I have struggled with determining the difference between deaf-blindness and autism. However, I am convinced his behaviors are a result of him being deaf-blind. So, I am now in the middle of researching deaf-blindness and how it impacts my son’s overall ability to live life to the fullest.
I want him to receive the correct services for the disability that impacts his life the most! I intend to learn as much as I can about deaf-blindness and then share that knowledge with everyone who works with and/or encounters my son.
If you would like to learn about deaf-blindness, please look for some of my upcoming posts and check out the National Center on Deaf-Blindness (https://nationaldb.org/).