"Let There Be Light!"
Yesterday at work, I was talking with a coworker who stopped me in the hall. The conversation was about recognizing Autism in an infant/toddler and the parent’s perspective. As we talked, I was asked where on the Internet someone could go for good information. Despite the fact that I have spent countless hours on the Internet reading about Autism and the Pervasive Developmental Disorder spectrum, I could not think of a simple sing source of information. Sure, there are tons of sites, but very few address what is crucial for the parent who is embarking on this journey… instead focusing on what causes Autism, how to work with Autistic children, who to become and advocate, etc.
I explained to my co-worker that the most important thing for a parent was to understand that their emotions are normal… the rest, knowledge about who to talk to and what to do, will come to light as time progresses. That being said, I decided that I should take some time and blog space to relate some of my feelings and thoughts during the period prior to and shortly after Connor’s diagnosis.
First, I need to start at birth. Although some people may think it insignificant, I didn’t at the time, nor do I now. What I am referring to is that Connor failed his initial newborn hearing test the first time, but passed it the second time. When that happened, Autism was the last thing in my mind; I was more concerned that there may have been some minor hearing issues. Of course the medical professionals told me that I should not worry, as that happened some times.
Of course at his 3 month check up, his hearing tested fine and everything seemed to be doing well. At 5 months an infant should react to loud noises, turn their head towards noises, and watch your face when you speak to them. Connor never really did any of these at 5 months. If he did, it was intermittent at best. Between 5 months and 12 months is when an infant’s “baby talk” is supposed to start developing into things like “mama” or “dada”. For us, it was well into 14 month when Connor started to use “dada” and he used it inappropriately until well on towards 30 months. (He still has gender reversal issues where he will use the incorrect pronouns.)
At about 18 months, I started to suspect that there was something going on. I began to research different developmental delays on the Internet and in book stores. At the time, Autism kept popping into my head, but I wasn’t sure if that was really the problem.
Some time around 30 months (2 ½), Connor’s vocabulary started to pick up pretty well _(about 15-20 words or roughly ½ of the normal vocabulary for a 24 month old toddler), but most of his speech was developed through echoing television shows and not through conversations with his mom or I. In hind site, this was a glaring example of echophilia, something common in Autism.
I think it was probably around the age of 3 that Connor started to do self stimulation actions; such has hand flapping and spinning. He also started to make a great number of auditor noises to accompany the hand flapping. It was these actions that truly narrowed my investigation into Autism and the related spectrum disorders. I began to suspect, with a great deal of evidence to back it up, that Connor was in fact Autistic.
Over the next 6 months, my wife and I struggled a great deal. While we really wanted to know what was going on with Connor and if he truly was Autistic, there was a great deal of emotion working against us. One of the hardest things for us to deal with was a sense of guilt. My wife and I would frequently look at each other and ask if we were making it all up. At times we both felt as though we were trying to “make” Connor Autistic. It didn’t help that Connor was an incredible adaptor (and still is to this day). He made such a great public appearance that any mention of Autism to our family and friends received odd looks.
Not knowing what to do, I approached several people at work for help (the advantages of working in a hospital!). The pediatrics department was SO helpful and provided me with the information on who to contact at the regional center. We were finally on our way to a diagnosis and an understanding of what, really, was going on.
I must say that this was VERY difficult for us… in fact, I would even say that the time we spent suspecting it, but not having a diagnosis, was more difficult than trying to learn to cope with the diagnosis once it was made.
Well, I know I started off by saying that I would write about the time leading up to and just after his diagnosis, but I am going to stop here as I am writing this VERY early on Friday morning and I probably should get to sleep before work. I will try to pick up the tale this evening, but no promises. If not tonight, then tomorrow…
I explained to my co-worker that the most important thing for a parent was to understand that their emotions are normal… the rest, knowledge about who to talk to and what to do, will come to light as time progresses. That being said, I decided that I should take some time and blog space to relate some of my feelings and thoughts during the period prior to and shortly after Connor’s diagnosis.
First, I need to start at birth. Although some people may think it insignificant, I didn’t at the time, nor do I now. What I am referring to is that Connor failed his initial newborn hearing test the first time, but passed it the second time. When that happened, Autism was the last thing in my mind; I was more concerned that there may have been some minor hearing issues. Of course the medical professionals told me that I should not worry, as that happened some times.
Of course at his 3 month check up, his hearing tested fine and everything seemed to be doing well. At 5 months an infant should react to loud noises, turn their head towards noises, and watch your face when you speak to them. Connor never really did any of these at 5 months. If he did, it was intermittent at best. Between 5 months and 12 months is when an infant’s “baby talk” is supposed to start developing into things like “mama” or “dada”. For us, it was well into 14 month when Connor started to use “dada” and he used it inappropriately until well on towards 30 months. (He still has gender reversal issues where he will use the incorrect pronouns.)
At about 18 months, I started to suspect that there was something going on. I began to research different developmental delays on the Internet and in book stores. At the time, Autism kept popping into my head, but I wasn’t sure if that was really the problem.
Some time around 30 months (2 ½), Connor’s vocabulary started to pick up pretty well _(about 15-20 words or roughly ½ of the normal vocabulary for a 24 month old toddler), but most of his speech was developed through echoing television shows and not through conversations with his mom or I. In hind site, this was a glaring example of echophilia, something common in Autism.
I think it was probably around the age of 3 that Connor started to do self stimulation actions; such has hand flapping and spinning. He also started to make a great number of auditor noises to accompany the hand flapping. It was these actions that truly narrowed my investigation into Autism and the related spectrum disorders. I began to suspect, with a great deal of evidence to back it up, that Connor was in fact Autistic.
Over the next 6 months, my wife and I struggled a great deal. While we really wanted to know what was going on with Connor and if he truly was Autistic, there was a great deal of emotion working against us. One of the hardest things for us to deal with was a sense of guilt. My wife and I would frequently look at each other and ask if we were making it all up. At times we both felt as though we were trying to “make” Connor Autistic. It didn’t help that Connor was an incredible adaptor (and still is to this day). He made such a great public appearance that any mention of Autism to our family and friends received odd looks.
Not knowing what to do, I approached several people at work for help (the advantages of working in a hospital!). The pediatrics department was SO helpful and provided me with the information on who to contact at the regional center. We were finally on our way to a diagnosis and an understanding of what, really, was going on.
I must say that this was VERY difficult for us… in fact, I would even say that the time we spent suspecting it, but not having a diagnosis, was more difficult than trying to learn to cope with the diagnosis once it was made.
Well, I know I started off by saying that I would write about the time leading up to and just after his diagnosis, but I am going to stop here as I am writing this VERY early on Friday morning and I probably should get to sleep before work. I will try to pick up the tale this evening, but no promises. If not tonight, then tomorrow…
posted by Brian The Autistic Jedi at 01:47
1 Comments:
Brian,
These types of stories are exactly what I'm trying to pull together for Autism for Parents. One aspect of the site I'm starting to build up are stories from parents who have been through the various stages of autism, from diagnosis through adulthood. I'd love to take this post and include it on the site. You can contact me by e-mail if you'd like to discuss it: autismforparents AT gmail.
Brett
Post a Comment
<< Home