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Not Knowing

Posted Aug 26 2008 11:37pm
Though it has been more than a few years now, I still recall elements of my undergraduate degree. Though I did not pursue it as a career, I majored in Psychology with an emphasis on Neurophysiology. In the lower level Psych classes, it seems that just about everything they taught us was based on the concept of "stages". Erikson's Stages of Psychosocial Development. Kohlberg's Stages of Moral Development. Piaget's Stages of Cognitive Development.

In keeping with the basic idea I was left with - that the majority of these developmental diagrams were just flawed attempts by smart people at making sense of an incredibly random and unpredictable series of potential developmental trajectories - I will now introduce to you Steve D's Stages of Autism Acceptance Development (for NT's).
Let me begin by saying that my stages will be tremendously flawed, unable to be generalized to anyone but my own self, and might even piss a few people off.

Stage 1: You don't know, and you don't know that you don't know.

Stage 2: You don't know, and you begin to know that you don't know.

Stage 3: You know, but you don't know that you know.

Stage 4: You know, and you know you know.

Any parent of a child diagnosed with autism is intimately familiar with Stage 1. This is the time when we know nothing. We are pretty much going off the limited and largely fallacious information provided to us by the person giving the diagnosis. This information usually contains the line, "A person diagnosed with autism may even someday have the ability to live independently in a group setting." While true for many autistic people, this flawed statement does not even begin to describe the real set of possibilities that exist for many others who receive this diagnosis in their first few years. But when someone is new to their child's diagnosis, you just don't know these things. One also, if they share a similar background to me, has limited if any experience in knowing autistic people. One has virtually no working knowledge of what "autistic" really means. One has no conception of the range of difficulties the disorder can cause people to experience, no conception of the huge variance in personal experience autistic people can live with. It also has an overriding negative connotation - another thing which proves that at that stage we "don't know".

At some point later, we enter Stage 2. Everyone does. This is sometime after we have spent X amount of hours researching treatment options, funding options, outcome studies, reviewing discussion boards, attending local meetings, joining Autism Societies, meeting parents of other special needs kids via the school district. This is the point where we say to ourselves, "Crikey! (if we are Australian, anyway, which I am decidedly not) There is so much to learn!" And so we go about it. This is a crucial stage, and is the one that usually devolves the autism community into sects. Based on choices made at this point, one tends to set down a particular path. There are a million choices, but most are settled on while we are still in the "Knowing we Don't Know Stage".

I cannot comment on the last 2 stages, other than saying this:
-I am still in Stage 2
-I know a few NT folks who I think are in Stage 3.
-A non-autistic person cannot get to Stage 4.
Someday I will learn all about Stage 4 from my son. He is a bright, verbal, autistic boy who is not facing some of the challenges that other autistic people are facing. He is going to have his own set of challenges, especially I think those related to navigating social situations. I hope to raise him in such a way that he can, if he so chooses, be the ultimate advocate. An autistic person with Steve D's Stage 4 Awareness.
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