“Does she ever point?” the evaluating psychologist asked us one day toward the end of another grueling session where Emma was suppose to play with a series of plastic ‘nesting’ cups. Emma showed zero interest in the nesting cups or, for that matter, in any of the other dozens of toys the woman had brought with her. Richard and I looked at each other and slowly shook our heads, no. “Is that important?” I remember one of us asking. “Yes, a typically developing child will always point to things that they are either interested in or want to know the word for.” I will never forget that instant as it became a defining moment in the evaluation. The evaluation that ended in a diagnosis of PDD-NOS when Emma was two and a half .
It had been only a month before – August of 2004 when Emma stopped speaking almost completely. She had begun to slide more and more into her own world which did not seem to include any of us. Her interest in anything ‘outside’ diminished. But she seemed to have a busy internal life, one that we were not privy to, nor able to share with her. I dealt with the diagnosis with my usual pull-up-your-boot-straps-let’s-figure-this-thing-out-and-fix-it attitude. I come from a long line of strong, independent women and this was the mode I fell into. The first thing to do, I thought, was find out what autism was. I had no idea, my only reference was a mixture of “Rain Man” and some books I had read as a young adult, which posited that the mother was ultimately to blame and that autism was the child’s emotional response to an unloving, controlling mother. Undaunted, off I went to the book store where I spent hours reading. The first book was about a woman living in New York City whose child was diagnosed with autism and so she adopted a vigorous program of ABA therapy, hired a young girl to help her and after a few years, the child was normally functioning and off to a main stream school. Another book recommended a casein/gluten free diet. I remember talking with one of Emma’s early intervention therapists who said she thought Emma would be mainstreamed by the time she was in kindergarten. I had it in my mind that we were in for a few tough years, but with perseverance and a great deal of hard work, we would see this thing through. I can do this, I thought and when it was all behind us, we would look back with a smile and say, “oh remember when..”
But ABA did not help Emma. She has a phenomenal memory and memorized all 400 of the ABA flash cards, but when presented with a similar object, one that she knew from the flash card – such as a blue t-shirt – yet if I held up a blue blanket or one of her blue shirts, she could not tell us what the color was. It became frighteningly clear that Emma could not generalize the information.
Back to the book store I went, returning home with an arm load of new books on autism.