FACT: In general, Lia only does what she wants to do, if, and when, she wants to do it.
A significant portion of the assessment tool being used to gauge Lia’s developmental progress relied on historical data reported by the primary caregiver(s). As one of her more “regular” nurses, I was interviewed by the therapist completing the documents, but it was very early in our relationship. Lia didn’t know me well enough to care to communicate or demonstrate her skills, and I didn’t know her well enough to realize that was the case.
When the therapist asked if she could independently perform a certain skill like dressing or toileting or feeding herself, several of my answers were “she can do it if she wants to, but there are occasions when she doesn’t really want to, or acts like she can’t, so she isn’t consistent.” There isn’t a bubble to color in for that answer. She either does or she doesn’t, and if she isn’t consistent, she doesn’t.
Another question was related to her spoken word count. I had never counted, or really even thought about it in that respect so I guessed as well as I could at the time. But the question triggered my curiosity and I started a list of all the words and phrases I had heard Lia say. My original guess was so wrong. Her vocabulary was twice as large as I had reported. So I called the therapist and asked for a do-over.
Since then I have started more lists for Lia, I’m a visual person, it helps when I can actually see things in black and white. Along with her vocabulary list I have a list of the skills she can complete on her own or with assistance. I also have a list of the signs she uses to communicate. When she accomplishes something new, I add it to the appropriate list.
In the face of standardized tests and diagnostic tools, the gap between the developmental velocity of autistic children and their non-Autism Spectrum peers often feels more like a chasm. However, these developmental delays are, in fact, a significant part of the definition of autism. It’s a fact that isn’t lost on the parents of children on the spectrum, but that doesn’t mitigate the feelings of despair these parents often experience when their 7-y/o tests at the “24 month level”, or in the case of Lia, a teen who tests in that same range.
Some kids just don’t test well. Over the course of time it has become quite evident that Lia knows a lot more than the tests would indicate she knows and is capable of doing. So, I don’t compare Lia’s achievements or actions to those of her teenage peers, autism and Down Syndrome put her on a different timeline. I visualize Lia on a Lia Graph. One that compares what she can do now with what she could do a year or six months ago. On this graph I can see her actual patterns of growth, along with a few regressions, but it is all about Lia and what she has accomplished in spite of the odds against her.
The gap? Yes, it does exist, but I think it’s extremely important to remember, especially when working with autistic learners, and special needs learners in general – they don’t necessarily know less than their peers, they may just know different.