Diagnosis Imitating Art

If we hadn't left New York, it might have taken much longer to notice that there was anything clinically atypical about my son.  I would most likely still be teaching part-time at the university, during which time my son's babysitter, who lived around the corner, would be looking after him in our home.  There was a private preschool in our old neighborhood, but it probably would have been too expensive for us; and our district school (New York has a complicated system of decentralized school districts, the result, in part, of the Ocean Hill-Brownsville teacher strikes in 1968) did not have Pre-K.  It took experienced teachers in the preschool he began attending in our new city to alert me to the fact that he might not be developing typically.

My son was a late talker who spoke only about five words before he was two.  I enrolled him in a language study conducted by a doctoral candidate in speech-language pathology at my university, who ran a full battery of tests on him and concluded that "he's just one of those kids who's a late talker and we don't know why."  I did not sign him up for Early Intervention because he began talking exactly on his second birthday, and in three months was speaking in complex sentences with clauses and antecedents.  His potty-training experience was similar:  he started late, but mastered it almost immediately.

The speech-language pathologist ruled out autism for my son, because he made great eye contact and his cognition was clearly unimpaired.  However, I had noticed unusual things about him as a baby and toddler:  for instance, he never had the tight grasp on your finger that most infants have (my woo-woo homeopath and former friend claimed that he didn't need it, because he felt so at home in the world; whatever), and he didn't point at things until he was almost three, though he did indicate things in other ways.  He also avoided drawing and cutting activities like the plague, so I didn't push him in those.

We started the evaluation process in March of this year, and my son was given an IEP in June.  He's going to be attending an integrated Pre-K in the fall in which there are four teachers in the classroom, and half the students are typical and the other half disabled in various ways.  But he still doesn't have a diagnosis, just a collection of symptoms and behaviors; he will not get an official diagnosis until he sees a developmental pediatrician in October (the appointment was made in May, and we will have to travel over a hundred miles for it).  Nonetheless, reading between the lines in the evaluations, I anticipate a diagnosis of Asperger's or another high-functioning autism-spectrum disorder, which I confirmed with my son's occupational therapist.  In some ways, he is absolutely textbook for Asperger's, and, in addition to his delays and behavioral problems, he also has certain prodigious gifts, which is not unusual.  I am anticipating that after kindergarten I will be homeschooling him, because I fear that there is no school program we can afford that can teach to both his gifts and his delays.  Public schools are required to address disabilities and provide growth for students who demonstrate them, but not to provide enrichment if those same students also exhibit giftedness; private and parochial schools are not required to do anything for children with disabilities.

I really only started suspecting Asperger's last spring, however, when I picked up the book Tobin Learns to Make Friends, by the Northern-Ireland-born social worker Diane Murrell, from a library book display.  The book is about a little train (trains are a common obsession for kids on the spectrum) who exhibits classic signs of Asperger's, and has various scrapes learning the rules of making and maintaining friendsips with other trains.  I cried when I read it:  In the stories of Tobin's misadventures and difficulties with his peers, I might have been reading about my son.

And then, on Retired Waif's sporadic blog, I read about an unfortunate incident that sent shockwaves around the autism blogosphere earlier this year, when Smockity Frocks, one of those funny, witty, self-deprecating Christian-mom-of-many bloggers, wrote about her trials at the library one day when a little girl my son's age was behaving very, very badly and the child's caretaker did not respond in the way that Smockity thought she should have.  Smockity's truly cruel mockery of a child obviously on the spectrum made me cry again, because, once again, that stimming, perseverating little girl could easily have been my own child.  And even worse were the congratulations of most of her commenters, and Smockity's defensive response to the ones who suggested that the girl might have autism and that Smockity might have shown a bit more sensitivity (not to say charity) towards difference (after the ensuing pile-on, Smockity took down the post, but it can be read in cached form here).

Because of all of this, I'm in some ways very glad that we have moved away from New York, in spite of the fact that there is a much greater variety and amount of services available to children with disabilities there.  In New York, I would have been far more caught up in teaching and scholarship and my other historical concerns, and it might have taken me even longer to cotton on to the fact that my little boy has some special needs.  And I'm extremely grateful to Retired Waif for her friendship back when we were neighbors in the Bronx.  She's a gifted scholar and an excellent person all around, and l have learned a great deal from her approach to disability.