Neurotypical missionaries?

Well, this is likely to be rambling and half-baked, especially as I am trying to compose it in between attending to S who is under the weather with a cold. But I have been trying to clarify for myself, for some time, exactly what I am doing for P, my AS son. Deborah Lupton describes, in The Emotional Self, "the observation and monitoring practices of the human sciences [which] construct the notion of the 'normal' self against which people are urged to measure themselves. If they are found to be deficient, individuals are encouraged to work towards achieving 'normailty'" (93). Alongside this, she notes that there is an increasing focus in contemporary western culture on "the confession of one's innermost feelings, dreams, and fantasies to other [as] a major part of the strategies of attaining self-knowledge, directed at the 'showing forth' of the 'authentic self'" (96). The focus on emotions and intimacy, and the professions that have built around these concepts, is enormous in the modern western world. And it's fine by me; I seem to have absorbed these lessons well and basically have no problem with them.

But they help me to begin to articulate a dilemma concerning my AS son's development. The notions of subjectivity that Lupton identifies, and the techniques designed for obtaining that kind of self-experience, seem almost antithetical to the way the AS people I've encountered function. Is my task to assist P towards this version of selfhood? Do I assume that he is capable of achieving, to a relatively limited degree, this kind of "self", and the more I can help him with the better for him? Or do I do it so that at least when he is older he will have some rudimentary tools for dealing with others who value emotions in this way? In some ways, I've painted a false dilemma because I've already had the tremendous good fortune of encountering the work of Stanley Greenspan, even before I knew that autism had any place in my life. And I am currently, with great excitement, making my way through The First Idea, the book he co-authored with Stuart Shanker. Their point is precisely that although autism has a biological basis, individuals can be guided through certain essential stages of emotional development even belatedly. In this view of autism, affective knowledge is not being foisted upon someone who is fundamentally at odds with this way of understanding the world; rather, access to this essential feature of functionality is opened up. Because it is not emotion for the sake simply of feeling; for Shanker and Greenspan, emotion is the key to symbolic thinking. I am finding this to be enormously fertile ground for navigating my way through the various "interventions", "therapies" and "supports" available to my son. And inevitably, it affects my thinking overall about who we all our, what notion of "self" we live with, how we believe ourselves to function. And I hope that I will be able to develop these ideas and have something a little more articulate to say down the track.

Belatedly, the scorecard

I have neglected to report on the outcome of all the professional assessments that we endured in the first half of the year. And so, the scorecard for S: does he have AS or not? We now have, on the no side, two pediatricians and one speech pathologist; on the almost certainly not, one OT, on the fence but leaning towards the not side, one psychologist and one psychiatrist. We continue to see the psychologist who, without the distraction of the AS question, more and more identifies patterns of behaviour related to anxiety.

What I take from all this is that he is odd enough to raise question marks from all these professionals (although least from the OT, SP, and the Pediatrician who specialises in autism, who tend to see him as "normal" but with some regulation issues), but no-one quite knows what to say. It's kind of fascinating in a way. For me, I feel a slight sense of relief that no-one is sending me away saying my child is fine, it's all my problem -- that doubt about my parenting, I presume that that's not just my own pathology, that most parents share it to some degree. Other people have now seen his blocking, antisocial behaviours and confirmed that they need some kind of attention.

Having undergone this ordeal of professional speculation, it feels, happily, almost to be part of the past. He has discovered what the concept of "friend" means. He is having some play sessions with children his own age, and generally they go very well.

When lamenting the months of waiting before an appointment was available with the pediatrician of our choice, the OT to my surprise was pleased at the delay, saying that with any luck he'd have a huge developmental leap in the meantime and all would be resolved for the best. She was pretty much on the money, but back then, there was no way I could wait calmly for nearly 9 months to pass before this could be verified. One of the earliest signs that the tide was turning came a couple of months ago, when S and I went to the museum together. It was the outing of my dreams. We conversed; he asked question and was thoughtful about my answers. We were really, truly together. There was a tinge of sadness to all of this though, as he was particularly interested in a some stuffed animals, and wanted to know if they were alive. So I explained that they had died and there were some people who knew how to take the skin from an animal and make it look like it was still living. From then on, it was "poor bird", "poor horse", "poor lizard". Finally, we entered the ocean gallery and found ourselves in front of the giant squid. Two years ago he'd seen for the first time the video of the scientists measuring and then cutting out some part of its anatomy, to this day I'm not sure what. At the time he stared with big eyes and then said to me, "hurt?" I said "no". I don't remember if I told him it was already dead -- I don't know what I could have said to a 2-year-old who was quietly but clearly having a crisis. We watched the same video yesterday, and then the animation of the squid hunted by the whale. "Poor squiddly" he murmurred, turned to me, and hugged me with his heart and soul.

It sounds too trite, both psychologically and aesthetically, but I think that his nascent confidence with friends let him drop his defiant barriers and share this basic, fearful pain with me. This acknowledgement of vulnerability flickers in and out of sight, but on the whole, life has been calmer and happier for the whole household, largely because S seems to have emerged into a new phase of his life.