On November 25, 2007, I sent out an SOS email to just about anybody that was located within 60 miles and was a professional organization with a title that began or ended with the word autism. I got several responses. Now remember I didn’t know squat about anything when it comes to autism, but I was extremely scared and anxious to get help right away. My son had been slipping away and I was just becoming aware of it.
I got several prompt replies, all of them extremely helpful. I sensed others had been down this road prior to my situation and these professionals were used to us desperate parents.
One of the first things that happened was we were put into contact with the local Children’s Developmental Services Agency, a division of Public Health within the North Carolina Department of Health and Human Services. On December 6th Ben was seen by a specialist. Ben was 19 months and 19 days old. He was evaluated and scored at 21 months for Gross Motor Skills, 18 months for Fine Motor, 18 months for Cognitive, 8 months for Language, 21 months for Self Help/Adaptiveand 12 months at Socio-Emotional (ELAP) The diagnosis was “Specified Delays in Development” 315.8
On January 24, 2008 Ben had another evaluation scheduled by the Early Intervention Service Coordinator. This woman has become our life line. We trust her, we welcome any and all suggestions and have found her to be extremely straight forward and to the point. When she suggested Ben meet with a pediatrician and a psychologist we agreed and on January 24th Ben met with them and was put on the edge of the spectrum.
I bet I double guessed these two experienced professionals all the way home that day. How could he be on the spectrum? I mean come on, sure Ben didn’t jump up in the doctors laps and say “Hi!” but he acted kinda normal, and was well-behaved… sort of.
The doctors, of course, saw it differently.
“Ben is moderately willing to participate with the evaluator”
“Ben engaged in very limited periods of reciprocal interaction”
“Few intelligible words were vocalized”
“activity level was above normal”
“stuck thumb in his mouth and had a fixed gaze”
“lack of visual and listening response”
“Ben threw objects during the evaluation”
“frequently would not respond to staff requests for change in behavior or attention”
“behavior was predominately self directed”
“demonstrated little interactive play with this evaluator”
“exhibited some stereotypical autistic spectrum behaviors in this setting”
So I fought it for a day or two, maybe a week or two, until I could swallow the bitter pill. Ben was on the border, his CARS (Childhood Autism Rating Scale) score was a 30. Scores range from 15-60. Ben’s 30 is right on the threshold, squarely on the line between non-autism and the lowest bound of the mild/moderately autistic range.
Now some might say, “hey that’s good news, it could be worse” and of course it could be worse but that’s like saying it’s a great bucket except for the leak. But I understand, what I don’t understand is how any of this will work out in the long run. If Ben was a movie it would be missing a scene. You might be able to follow the story, even enjoy the movie but you’ll never know how that missing scene would have affected the intended experience. Sure, God ‘s plan, fate and all that, the intended experience is the life with the missing scene, get over it, there is no perfection and everyone has a flaw, this is Ben’s. We skip a scene, a chapter, a verse, in his developmental process and we will never know what’s permanent and what’s temporary, a head full of what if’s will plague us/me forever. What if Ben hadn’t suffered this injury, this problem, this set back, what if Ben wasn’t autistic, what if he was “normal?”
Of course no one will ever know, except perhaps Ben, all of us sense some unrecognized potential hidden within us, at least I do, I could have been … if it wasn’t for… if I would have just had the….blah, blah, blah, I dunno maybe it’s just me. But this does bring up a question, if, and I say if with fingers crossed, if Ben recovers and by the time he enters first grade and is at age level in all areas, do we tell him about all this stuff later on? Do we tell him he used to be developmentally delayed and was at one time diagnosed with autism?
Do we plant the seed in his normal brain that he used to be “retarded?”