“One In A Million” Treatment

The studies have led the network news, stating the fact that one in 150 children are diagnosed with autism.  This is a startling fact taken at it’s face, and as a parent, shortly after counting fingers and toes, you quickly turn your concerns to less visible worries about your newly born child.  With Asperger’s syndrome, it takes a while before you can notice.  The milestones are reached.  Height and weight are average.  She starts to walk and talk on time.  Then one day you notice that your child is running in circles for hours, clockwise only, on end.  You get out the video camera, because it’s darn near the cutest thing you’ve ever seen.  A few days later, your friends notice the running in circles, they think it’s cute too.  Oddly enough, the direction of her running is always clockwise in pattern.  A joke is made about “What would happen if we took her to South America?  Would she turn around and run counterclockwise?”.  She never feels pain when she bumps into walls.  She’s a kid, and that’s just what kids do, you think to yourself.  As her speech develops, you notice that she refers to herself only in third person, you might even make up a name for it, “Bob-Dole-itis”.  Only when she starts preschool do you start to question some of these things.

For my wife and I, our first parent teacher conference with Lucy’s teachers caught us unaware.  Her teacher told us she never played with the other kids.  She never looked her in the eye.  All of her language was quotes from television shows she had seen, or from conversations months’ prior.  She suggested “early intervention”, and speech classes.  In other words, her teachers did everything they could legally, except specifically tell us the exact words that they thought Lucy had autism - words that under the current law, teachers are not allowed to utter - the reasons for which we plan to explore.  Had it not been for Jen’s mother, Doris, a retired special needs teacher and administrator, who was able to translate exactly what Lucy’s teachers were saying, we might not have understood - although we did have our own suspicions.  That said, even with the years of close work with special needs children under her belt, Doris did not believe there was anything to Lucy possibly being autistic - Lucy is an empathetic child, and the baseline child on the autism spectrum supposedly has no empathy.  Lucy was not autistic; she said, no way - no how.  These words did not offer much in the way of comfort, as the more we learned abut autism, the more signs we noticed Lucy had.

Lucy’s pediatrician confirmed Doris’ position, he did not feel Lucy was autistic - she was too
happy, too giving; however out of diligence he suggested we take Lucy to a pediatric neurologist for a second opinion.  The appointment we made was for early 2007, as the pediatric neurologist was booked two months out.  We put our fears in the back of head, and as I imagine many parents would do if put in the similar situation, tried to forget about our concerns - operated as though our pediatrician’s diagnosis was the correct one, even though self-admittedly he didn’t have much in the way of expertise in autism - as I have recently found out, it’s not something they teach in medical school.

Months passed, and the appointment finally arrived.  We had our list of symptoms prepared, and questions narrowed.  The diagnosis process was observational, with the neurologist asking us to tell him why we were concerned that Lucy might have an autism spectrum disorder.  Within an hour or so, he validated our concerns - he diagnosed her with Asperger’s Syndrome - the same learning disorder that we had learned about online, and of the known Autism Spectrum Disorders, most sounded like Lucy.  Jen was crushed, and I was, oddly enough, relieved.  It made sense of some of the questions we had.  That feeling of relief was short lived however, based on the naive feeling of, if they have a name for it, they must know how to treat it.  His suggested course of treatment - keep her in school, and sign her up for speech classes.  That was it?  That was all he could offer us?  We had read of other treatment options - removing wheat and dairy from the diet, applied behavior therapy, and the fact that this disorder can be treated - maximizing the quality of life for those on the autism spectrum.  Somehow speech and school just didn’t sound like enough, and we were sure of one thing, we didn’t want her labeled as autistic through the school system - something she would carry through her entire school years.

This feeling of not knowing what to do was only compounded by lack of available information that had to do with raising a preschooler girl with Asperger’s - most of the available information is aimed at older children, and boys at that, with their symptoms being actually quite different that of girls.  To put it bluntly, we felt we were up a creek without a paddle, knowing that if our intention was to help Lucy as best we possibly could as parents, we were going to have to forge our own trail.  It is this feeling that I want to address with this film - what to do, and not to do after the diagnosis.  A diagnosis of an autism spectrum disorder in a child is hard on a marriage - up to 80% of parents of autistic children get divorced.  Our particular situation is compounded by the mental illnesses my wife and I contend with, myself with bipolar disorder, my wife with depression.  Taken individually, these three disorders each pose a significant challenge to a household.  Together, it poses a balancing act that only a tight wire artist would dare embark upon.  As a filmmaker, it makes for a set of characters that not even your best screenwriters could fathom.  Sometimes there are topics that you pick as a documentarian, and then there are topics that pick you.