Sunday, May 18, 2008


I encountered a study a few days ago that you may have not noticed. Here is an excerpt from the introduction:
This remarkable growth has been accompanied by continued and escalating calls to reform [...] policy not only at the national level but within large and small communities across the country. [...] policy debates touch on a wide array of arguments: economic, political, ethical, legal, and emotional. In many cases, these debates are also influenced by incomplete or misleading information. All sides in the debate face a trade-off between conveying a concise message and oversimplifying an inherently complex issue.
These are many of the issues I find myself thinking through in relation to my own son's future, as well as for autistics as a whole subset of the population. And the granular nature of the Autism Spectrum - the vast complexity of how autism can manifest and then play out over an individual's lifespan - plays into the extreme complexity referenced in this quote from the study.
The study goes on to say:
The purpose of this report is to present information relevant to these ongoing debates by measuring the degree of distinction between the [...] populations of the United States, or alternatively, their degree of assimilation... The analysis introduces a numeric index of assimilation, which measures the extent to which the [...] can be distinguished from each other on the basis of commonly observed social and economic data.
Interesting angle. This study is bringing to bear some statistical algorithms to determine the degree of assimilation into U.S. general society by a highly heterogenous group that is categorically similar only in respect to the fact that they begin as societal "outsiders".
You may have gathered by now that this study is not about autism or any other disability. Instead, it is about immigration. What fascinated me when I came across the abstract is how much I yearned to see similar data gathered and presented about autism.

A few disclaimers: I am not minimizing or overdramatizing the circumstances surrounding any individual or any group labelled or categorized as autistic or immigrant by making this comparison. This discussion is strictly about the data gathering and ensuing statistical analysis used in the Manhattan Institute study and how the autism research community might be able to take a few lessons.
Look back at this sentence from the study intro for the sentence that tightened this analogy for me:
All sides in the debate face a trade-off between conveying a concise message and oversimplifying an inherently complex issue.
This seems to me to be such a common area of misunderstanding and misdirection in all areas of autism research, autistic rights, autism treatments, autism diagnosis.
One way in which this immigration study tries to channel the discussion is to create categories of analysis within which the data can be more accurately compared and analyzed. These categories are Economic, Cultural, and Civic. I think in a similar discussion of autistic assimilation the categories might look different. If 100 people were asked to name the 3 categories, you might receive 100 different answers. My answers would be, trying to keep in mind the vast array of people who are autistic: Activity/productivity self-determination, community and family involvement, and personal/spiritual/emotional expression. I'd be very interested in your comments with what three (or more, or less) you would identify.

I guess where I am going with all of this is that I, like virtually everybody involved in the autism community, would like to clearly and easily understand how best to approach solving the legion of challenges that face autistics over their lifespan. From toilet training to schoolyard bullying to friendship seeking to sexuality to job/career building to self-sufficiency at whatever degree makes sense for a given individual, I would love to see a clearer roadmap to success. I feel much the same way about the immigration debate, much of which seems to hinge on as many irreconcilable realities and viewpoints and human rights issues as the autism discussion does.

It is my belief that the autism community could draw some ideas from the Manhattan Institute's approach to gaining a deeper understanding of the immigration issue.


concerned heart said...

I wonder if autism struck your youngest son because I have collected much evidence that it is older paternal age and older maternal grandpaternal age at the mother's birth that often leads to autism. If this is the case,I believe the public needs to know.

Steve D said...

CH -
Autism did not "strike" my son. My son is autistic.
You are one of many who claim to "know" the cause of autism.
I'll follow the science and see where it leads.

VAB said...

I hate to be difficult, but I have to wonder whether the questions you are posing might not be unanswerable.

They are centered around the interaction between society and people with a certain grouping of characteristics. But, in the natural course of life, those characteristics will change. Old difficulties will fade. New difficulties will arise. Interests will be lost. Skills will be gained.

What is more, in the lifetime of an autistic person born now, the structure and expectations of society are likely to change so greatly that they will make anything we say now, next to meaningless. In the past fifteen years, what it means to be "autistic" has changed in ways that no one could have predicted. That's just fifteen years. People live up to a hundred.

With variables out there such as, advances in medicine, love, religious conversion, addiction, accidents, advances in technology, changes in the work force, not to mention, war, climate change, space exploration, revolution, disease, prosperity and so on, we cannot know what is in store.

abfh said...

Outcome studies using methods similar to the assimilation study could indeed be useful in identifying factors related to good outcomes for autistics.

I do not feel comfortable with using the term "assimilation" in reference to good outcomes for autistics, though. Such language tends to suggest that we are strangers in our own country.

Self-determination is indeed of the highest importance, although as VAB points out, the concept is very difficult to quantify and is defined in different terms as the culture changes.

Anonymous said...

I always wondered where the Borg came up with their assimilation terminology, now I know it was in the immigration literature.

(Just Kidding)

Great post.

and yes, Concerned, you might try reading people's blog archives before bringing your new found OLD NEWS into the arena. Second place I've noticed you trying to evangelize today.


Steve D said...

VAB - You're being a realist. I agree with all your listed variables, and understand your point about changes in understanding moving forward. The thing is, what can we be doing now to have a positive influence on those changes?

ABFH - I totally agree about using the term 'assimilation' in reference to autistics. I probably couuld have chosen a different title, but I wanted to be clear what the post was about. I seem to constantly find myself these days wondering how my use of language impacts those to whom I am referring. I think that's a good thing, but I also instinctively rail against "PC".

Patrick - It is possible that the Borg commissioned this study, but I doubt it since we still exist as a civilization. :)