My son was diagnosed with ASperger's last year - both a medical diagnosis and a school "finding" that qualified him for an IEP. This came after years of teachers and others hinting about this and that, though the school wouldn�t have initiated anything. N is a well-behaved, smart kid, and pretty easy to ignore. What helped us put the pieces together was a discussion with a psychologist. She asked us a lot of questions that made no sense to me at the time, and suggested we have him evaluated. The types of questions they asked us during the very thorough evaluation hit on so many aspects of his development that we�d never realized were related, such as not fully potty training until age 7, trouble eating, bowel issues, toe walking (so bad he eventually needed casting and then bracing) his trouble standing in line (he�d lean on people), inability to safely cross the street, etc. He also has the social difficulties and perseveration on limited topics associated with AS, but they weren�t so extreme (or disruptive) that they�d send obvious alarms to teachers and others. What teachers saw was an introverted, very smart kid who didn�t cause trouble, had a (single) good friend, and needed help �coming out of his shell and participating in class�. Oh, and he couldn�t really be in gifted programming because he wasn�t �organized� enough (read: socially competent). Oh, and why is he so darn spacey sometimes and why does he talk either too quietly or too loudly and lean on people? Stuff like that �never a major concern, just vague complaints and confusion about my son�s behavior. Occasionally he�d have a social misunderstanding that would seriously piss someone off, and he�d be mystified as to what he�d done wrong. I�m sure that to some of the experts questioning the diagnosis of �quirky smart kids�, they�d probably call my son one of the misdiagnosed ones. When considering diagnosis, though, I think it�s important to consider first and foremost whether the child is happy and functioning well in his environment. That�s not what we are doing when we ask whether a kid has AS or ASD because he flaps his hands, and it�s also not what we do when we only look at one environment with limited data about even that. My son�s teacher never knew, for example, that my child ate almost nothing in his loud, smelly cafeteria because of sensory-induced nausea. She didn�t know about the 2 hours of frantic stimming he did at home because he held it together at school. She didn�t pick up on the fact that he has no idea what day of the week it is, and that he can�t tell me what happened at school, and often seems not to remember. She didn�t understand that he was terribly confused by her sarcasm �that he could not understand when he said, �Really? That�s a good way to earn the class party!� she meant the opposite. This was not a child who was truly functioning well, at home or at school. Now, 8 months later, he�s made huge strides. He�s eating at school, he�s much more responsive socially, he stims and tantrums less, and he�s much happier. All that came with the label, with hard work, and with access to services that only come with the label.
Now, I get to hear people question the diagnosis � his new teacher claiming, �she doesn�t see it�, and relatives saying,� but he�s doing so much better, he can�t have AS�. It�s enough to make me want to scream. Maybe AS just isn�t the end of the world, you know? He might lose his label someday because he got some good help. If that happens, he will not have been �misdiagnosed� but brought up to a level of functioning to where his atypical neurology will no longer be such a liability.
