Whose Planet Is It Anyway?

Thursday, March 01, 2007

The Autism Reality Calculus

Supporters of neurodiversity often say that it is inaccurate and harmful to predict that a child who is on the autistic spectrum (or who has other neurological differences or disabilities) will never leave home, attend college, work, marry, et cetera. In response, some parents who are advocating for more services point out that not every child can realistically be expected to live independently, without extensive services.

And you know what? Both sides are right.

Our society has placed a large number of rigidly defined expectations under the rubric of "living independently." But the reality is that it is not a simple matter of ticking off abilities and accomplishments on a life-script checklist until we reach the magic number. Living independently is not a binary either-or state; rather, it's a complex multivariable equation.

Nobody in our society is fully independent; we all need many services from the world around us, and the nature of those services will be different for every person. Instead of arbitrarily and unreasonably dividing our society into groups of independent people and dependent people, which stigmatizes the latter and often places unnecessary stress on the former, we should focus on identifying particular needs and finding realistic solutions that actually work for each individual.

Not every child who has a neurological difference or disability is going to be self-supporting as an adult. But then, not every child who happens to be in the neurological majority is going to have a good job, either. Many external factors are involved, such as the availability of jobs in the economy at a particular time, how well those jobs are suited to each individual's abilities, the level of technological development, cultural expectations for certain kinds of people (for example, until recently, women were not expected to hold jobs) and so forth. There are just too many variables involved for anyone to make accurate predictions about what a child, whether autistic or not, will be doing in the long-term future.

Kristina Chew just wrote an excellent post about her choice to enjoy every day with her son, instead of worrying about his future and trying to predict what his life as an adult might be like. This is how she describes this decision:

I was not simply missing the forest for the trees; I had my eyes focused on images of what the youngest saplings might look like in 30 years. By preparing for a future I can only speculate about, I was not able to get the watering done and observe the new leaves growing on the branches.

As the snow melts in the Northern Hemisphere and spring's new growth begins, it's a good time to take a look around and appreciate the beauty and wonder of existence. The world is a fascinating and diverse place with many ecological niches, not just for plants and animals in nature, but also for human beings in our complex and technologically advanced society.

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  • In Latin America it's fairly common for non-disabled adult children to live with their parents, sometimes even after they marry. And I wouldn't say it's entirely due to economic reasons. My guess is that it's a cultural thing for the most part.

    In the industrialized world parents of disabled children often worry about what will be of their kids when they grow up. I suspect that in welfare states disabled persons end up having better living arrangements (materially speaking) than most non-disabled persons in the third world. Just saying that for a bit of perspective.

    By Blogger Joseph, at 8:34 PM  

  • Thanks for the link!

    We live with my in-laws and there is no way they could live by themselves at this point. It's taken some adjusting to live in a multi-generational household (with some clashing of cultures) but it's been a good thing for all of us. And the one person who's been the most accepting about everything---about everyone's differences--- is.........Charlie.

    By Blogger kristina, at 10:37 PM  

  • I had just written a somewhat related post today when I started making the rounds of favorite blogs and came here.

    You summed up the issue quite nicely. I believe when individuals work to find unique solutions to unique problems that we can create win/win solutions for everyone.

    By Blogger Club 166, at 11:13 PM  

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