I have been thinking a great deal about those first clues, the things Emma did that we now know were the first warning signs of what ended in a diagnosis of autism. The CDC has a website with a checklist – “Learn the Signs” .
According to their checklist, at 3 months, Emma was developing as any neuro-typical child, by seven months there were only one or two things on the checklist that she didn’t do. Both fall under the “Language” category.
“Responds to own name” is the first and at 7 months Emma did respond to her own name, but not all the time. I remember a friend reassuring me that her kids, who were older than Emma, didn’t respond every time she called to them either. Still, it was the first red flag.
“Can tell emotions by tone of voice” – this is difficult. I made some notes in her baby journal that she seemed preoccupied, but I can see how I and others would have dismissed this as being overly worried.
Everything else on the checklist were things Emma was doing – Ability to track moving objects, transfers object from hand to hand, sits with, and then without, support on hands, rolls both ways, (front to back, back to front.)
The 1 year checklist has more things that Emma was clearly not doing, but again, they were not black and white, such as: “Shy and anxious with strangers.”
Emma wasn’t shy or anxious around anyone. In fact, I remember thinking, with a certain degree of pride that this was an expression of her self confidence and independence.
“Cries when mother or father leaves.” Again, a sign of her independence, I thought and sometimes she would cry when I left, just not often.
“Shows specific preferences for certain people and toys.” She did, but not to the degree Nic had. She seemed indifferent to people and rarely asked for toys, something I attributed to her solid sense of self.
“Maybe fearful in some situations.” Emma showed no fear toward anyone or anything. We had no idea this was not a good thing.
“Does not search for objects that are hidden while he or she watches.” I remember Nic loved a picture book by Richard Scarry. It had a little animal (I can’t remember what kind) that was somewhere on every page, but often difficult to find. He loved scanning the picture and pointing to the mouse. When Emma was his age, she had no interest in the book, let alone locating the tiny hidden creature. It was the same with the mouse in “Good Night Moon”. Nic loved pointing out the mouse that is always somewhere on each and every page. Emma would push my hand away when I said, “Emma! Where’s the mouse?”
I told myself it was because the book didn’t interest her and not because it was indicative of a larger problem. I remember being baffled by her degree of disinterest. But I also remember telling myself that children are different and she just wasn’t as interested in books the way Nic had been. Finding the hidden animal, something Nic and I spent hours doing, was not enjoyable for Emma and while it made me sad that I couldn’t share this with her, I shrugged it off as yet another example of her temperament.
When I look at these checklists I am still struck by how many more things Emma did do than didn’t. Even on the 2 year checklist, the majority of bullet points were things she did.
Which is why diagnosing autism is so tricky. Many believe “autism” is a misnomer. They believe it is actually a word being used to house a wide variety of different issues. If they are right it would explain the intractable nature of “autism” and why it continues to confound.
For more on Emma’s journey through a childhood of autism and a trip down memory lane, go to: www.EmmasHopeBook.com