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I’m still churning with thoughts after watching the videos of Amanda Baggs, the young woman with low functioning autism that has so successfully reached out and opened a line of communication with the neurotypical (NT) world.

What I learned from watching those videos has shifted my thinking a bit. I can’t quite subscribe to Amanda’s beliefs that she is just communicating in a “different” language and that autism isn’t necessarily a disability as much as it is a different ability. On the one hand, I see her point, that her neurological wiring is different and that we “NTs” don’t often notice that people with autism ARE responding to their environment, but in much different ways than we are.

It was that thought that brought be back to LuLu. LuLu has been diagnosed PDD-NOS by any number of folks. Yet, the debate as to whether she’s autistic or not rages on. The school system does a simple checklist and declares “Naw, can’t be autistic because we didn’t check enough boxes.” But the truth is, it ain’t that clear and those type of ratings are very subjective. The big argument against adding the autistic label to her is LuLu’s desire to communicate. She wants to talk with you. She immediately approaches you…invades your personal space actually. She strikes up a conversation. She can’t maintain it more than about 2 sentences, unless you are talking on one of her handful of preferred topics, and then she will often switch topics abruptly or end the conversation just as abruptly if she’s distracted by something else. If you’re a same-age peer, though, chances are she won’t approach you, or if she does, you will quickly misunderstand her (a combination of her articulation issues and strange topic choices) and she will leave in frustration (maybe throwing in a few cuss words or an odd physical tic showing her mounting anxiety).

So, she TRIES to communicate, but there’s so much in her way. Parents of children with Aspersers tell me she has traits of a more high functioning spectrum disorder. Yet others tell me she’s not avoidant of communication enough to qualify.

Back to the Amanda video…Amanda reads a book and then rubs her face in it with great force. Interviewer asks Amanda why she does this. “I like the way the pages feel. They are rough,” was the reply. I saw much of LuLu in this. She frequently presses things to her face, especially her nose. Part of it is to take in the scent, but it goes beyond that as she presses her nose very forcefully into things…often into the arms of people she’s just met. It is a bit disconcerting for those of us “NTs”. Someone, sadly it’s often me, scolds her. It is not within the realm of social convention to press your nose forcefully on another person’s arm. Yet, she’s told me on more than one occasion that it helps her and she likes the way it feels. Hmm…

I watched Amanda sing her song that was part of experiencing what she was hearing in the world around her. I watch LuLu do the same thing. Some describe them as “complex verbal tics”, but after seeing Amanda, I recognize that it is the same type of song. “Ta, ta, ta, ta, ta,” are the words to LuLu’s song. And she often throws in this specific head jerking movement that looks like her head will pop off her neck. A tic? Of course…but it often happens at very low anxiety times and when I quiz her about why it’s happening and if she can stop, she tells me, “It happens because I like the way it feels, and yes, I can stop it.” Yes, people with Tourettes can suppress tics, but usually they don’t like them, do they? It’s as if not only does she have to do these things, but she derives some pleasure from doing them.

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