Wednesday, September 05, 2007

Invisible Good Outcomes

Longitudinal outcome studies of autism vary in their results. Roughly speaking they will report that 10% of autistic individuals have "very good outcome" and another 10% "good outcome", with the remaining 80% having "fair or poor outcome." (There are no indications these proportions have changed significantly after the introduction of early intensive behavioral interventions or any other interventions).

The concept of "good outcome" is, of course, based on neurotypical values, such as having no difficulties in social interaction, living independently without supports, and so on. There are various standardized tests they use to determine if a person has good or bad outcome.

An alternative view of outcome in autism.
Ruble & Dalrymple (1996)

This is an old paper, although very innovative in my view, and never before discussed on the web as far as I can see.

What they do in this paper is try to find an alternative way to define outcome in autism, based on concepts such as 'happiness', 'contributing to the community', 'learning', 'making choices', etc.

They start out with a non-representative group of autistics, that is, one with unusually poor standard scores. All of the adults in the group are found to have a "poor outcome" based on the traditional metrics of outcome. Nevertheless, the researchers then step outside the traditional framework.

Despite their social and communication difficulties, however, many of the adults from the present study were working in valued jobs, participating in family and community activities, learning to make choices, and generally happy. Thus the findings of this review, which indicated poor outcomes, led us to question the utility of traditional definitions of determining outcome and to reconceptualize this concept.

The authors characterize good outomes in the group as "invisible" to traditional methods of qualifying outcome. They present four "vignettes" of adults from the group who were doing well, and then discuss variables that seem to predict good outcome. Note that the predictor variables also differ substantially from the medicalized variables you will usually find in traditional outcome studies.

What seemed to be an important predictor of success was that whenever individuals and their families were confronted with challenges, they sought and successfully accessed various supports. For example, when families were told to "place" their young children, their parents sought and created alternatives. Some of the families were the first to push for integration in school and used their natural community and family ties to include and support their child. When families needed residential options, they created them. The families maintained monitoring and input into all the programs their children were in and kept in close contact with their children. They still do. These families identified new opportunities and advocated that their children be part of those opportunities. Family advocacy appears to have been a key factor in successful outcomes for Elaine, Ed, Andy, and Ellie.

It's an interesting paper. Check it out.


  1. Thanks, I find that interesting. Happiness is number 1 on the list of what I want for my son.

  2. In the long term, happiness/satisfaction is the only significant thing.

  3. Hmm... Many outcomes I would consider "good" would under those criteria be labeled "fair" or "poor", including my own. I live independently, but I have very low social skills and have trouble working--so I'm getting a college degree so I can work in my areas of interest, which is much easier. I imagine that they would put me in the "fair" category for the low social skills, isolation, and job trouble... but I consider myself to be a reasonably happy and successful individual. I would much rather be who I am than be so focused on acting normal that my stress levels go through the roof and I deny who I am...