Wednesday, November 14, 2007

Not Knowing

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.


abfh said...

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

That's why I decided not to go on to the upper level psych classes and chose a different major instead; it was obvious there wasn't much real science there.

Marla Fauchier Baltes said...

Weird. I never heard of those stages and have no idea where I would be. I went through the pase of trying lots of diffent cures and it was nothing short of frustratingly depressing and expensive. With our daughter we go back and forth, I think. I guess she has so many varied health concerns that we have to focus on one and then the other. Like her development and learning takes a back seat if she is having seizures all the time. When she was a toddler we did not pay attention to her inability to communciate since all she did was scream and cry much of the time. Once she could communicate some we realized she had heart issues and other health concerns. I swear, to us it never every seems to end. I feel like we are a bouncing ball going from one stage and back to step one all over again. I can say that since we beagn homeschooling we are able to focus more on all of her skills, strengths rather than on her sensory weak areas. That has made a huge difference for us.

Ed said...

Once again, I think you have described very well your approach to parenting as one that will work very well at empowering your son as well as others who hear how you approach things.
Good post!

mumkeepingsane said...

Well said. I think there's kind of a brick wall somewhere between Stage 2 and 3. I think realizing it's ok to not know is important too.

Another Voice said...

I believe I am still in stage 1; but after years of practice I am very accomplished at it. It seems that every time I learn something 2 more things pop up that I didn't even know existed.

Niksmom said...

Steve, this is spot on! Just when I think I've made it to the latter part of Stage 2, well...all of a sudden I find myself back in Stage 1! Unfortunately for many of us, our children's educators and service providers (medical or otherwise) seem to think they arein Stage 4 when really hey are in the same boat with the rest of us!