When Emma was first given a diagnosis, we were told she might not be autistic, time would only tell, but that for the time being they were giving her a diagnosis of PDD-NOS, which is the acronym for Pervasive Developmental Disorder Not Otherwise Specified. PDD is often thought of as a milder form of autism or as was explained to us, the diagnosis given when the child has enough “autistic-like” behaviors to require intervention, but doesn’t display all of them. As time went on however, Emma’s “milder” version of autism grew into the more solidly defined autism.
I remember speaking with her neurologists saying we were lucky in that Emma was mildly autistic and one of them said, “Well no, she isn’t mild.”
“Really? Where do you think she falls on the spectrum?” I asked, genuinely surprised.
“She’s moderate,” one of them said, kindly.
I was so stunned, I couldn’t speak. We had been assured by so many “professionals” in the field that her autism was mild, it never occurred to me they might be wrong in their assessment. Even when we kept trying the various behavioral therapies recommended with little progress, I continued to cling to the “mildly autistic” assessment. I kept thinking it must be something we were doing wrong. We weren’t giving her enough applied behavioral analysis, despite the 40 hours a week we had implemented. I thought of it as a kind of toddler boot camp, unfortunate, yet necessary. When we then trained with the brilliant Stanley Greenspan, I assumed we were not doing his floortime “right”. In essence I blamed our ability to adequately implement the various therapies as the reason she wasn’t progressing more quickly.
When we began having regular QEEGs done, which showed us images of her brain compared to her neurologically typical peers I was given the visual explanation I needed to understand what we were up against. There was no denying the vast difference between her lit up non-symmetrical brain and the brains of same age children not on the spectrum. It was only then that I began to fully take in just how much we do not know about autism. Years later, I now question anyone who claims definitively to know what will or will not help, what course they are sure we should take. It is the professionals who have the humility to admit all they do not know, whom I find myself interested in speaking with.
When Emma was about four we took her up to Boston to visit a well known and extremely well thought of gastro-intestinal doctor, Dr. Timothy Buie. I asked a series of questions and he never once answered with the sort of assurance I had become used to. Most of my questions he said he couldn’t answer because he didn’t know for certain. We left Boston with the tests showing Emma’s numerous ulcerations and inflammation to her GI tract. But with no solid answers as to why or how this had happened to such a young child. I continue to have tremendous respect for that doctor who continues to devote his life to finding answers, but has the humility to acknowledge how much we still do not know and understand when it comes to autism.