The Diagnosis Game

We first noticed something "different" about our son Kory somewhere around his 2nd birthday. At first we weren't concerned. We just thought he was unique, had his own distinct personality, and that just made him all the more perfect in our eyes. My husband and I were both child protection social workers and we each had a child from previous marriages, so we were well versed in child development.

His little quirks were cute, and not really THAT unusual for his age. He HAD to have his "blanky" to sleep with, and other "comfort" toys when awake, and he insisted on specific routines or rituals for doing certain things. Around the age of 3, he started to eliminate certain foods from his diet until he had successfully eliminated the entire fruit and vegetable group. This did cause us concern, but our family doctor assured us that it was just a stage, and although our other children may not have gone through it to the same intensity, it was not abnormal. Well, he has yet to grow out of that stage...

Around that same time, our doctor did notice that our son's speech was not developing normally. He had actually created his own language and taught it to his baby sister, 16 months his junior. The two of them would jabber on to each other, clearly having a back and forth conversation. Our doctor called it "twinese", but we had already named the language "koryese". He was sent for a speech assessment where it was determined that his language development was mildly delayed.

While his speech may have been slow to develop, he demonstrated other areas that he was very well developed. He had a special interest in letters and letter sounds. He learned the letter sounds very early, and was reading before he was 4. In fact, his speech was still not very well developed yet when he could read. He also had an aptitude for numbers and a speical interest in maps very early on.

We were sure we were dealing with Aspergers Syndrome when Kory was about 4 or 5, although he was not experiencing any issues at school - his social development lags were not so evident at that age when children are still expected to be egocentric. In 2nd grade, his teacher approached us with some minor concerns... and that is when the Diagnosis game began...

We shared our suspicions with the teacher and she requested testing... fast forward to today...

Kory is in the 4th grade. He has been assessed and diagnosed with everything but Aspergers Syndrome. His initial assessment stated that he meets all the criteria for AS, but does not display the "cognitive deficits" typically associated with Aspergers. Anyone who has a child with Aspergers knows that there are no typical cognitive deficits - on the contrary, many AS kids are of above average intelligence. The Pediatrician's take was that it is not Aspergers because he displays anxiety... he tells us that anxiety is not found in Aspergers children. Again, we know different - it is VERY common, and is in fact often one of the characteristics! That doctor prescribed anti anxiety drugs and invited us to return for follow up in a month. We did not fill the prescription.

For our purposes, we do not need a diagnosis. We do not need a doctor to tell us what we live with everyday. We have enjoyed considerable success in teaching and managing our son's behavior, and controlling anxiety without medication. For the purpose of obtaining supports in the school system however, a diagnosis is necessary. For the purpose of educating teachers and school staff, a diagnosis is necessary. And so we play... The Diagnosis Game...