Estée KlarThe Joy of Autism

I completely agree. I think it’s evident that I am of strong opinion that our views which effect accessibility to good education, accommodations (that enable that education), and general ability to live in this world without the judgments cast or constant comments about autism when we are with our children, would help alleviate that stress.

Ever notice that as autistic people (as adults) or as their caregivers, we cannot get away from answering questions about autism as if the individual is not there. We are more than the sum of our parts. We are more than our genes.

This is not to say that there are real challenges: anxiety, motor planning issues, communication issues — we are well aware of them. This is not to say that we do not need research into both how we can assist autistic people with all of it, yet we should consider yielding to the idea that autism is fundamentally wrong. We will always have a world in which there exists some type of disability. We cannot avoid considering how we treat people and under what premise.

After reading the Globe article on June 10, I was looking for a strong editorial, and I thank you for writing one. The push to weed out anything “atypical” is very strong and it’s shocking that a test is even in the works that would provide such meaningless information to a (likely) uninformed parent-to-be. As my family has experienced with our young son, life (and a good life at that) does go on after the diagnosis of ASD. Thanks again.

Great letter Estee. I do wish that more people would realize that not every autistic person is going to ‘contribute’ in visible ways. I’ve got a non-verbal, highly aggressive son who brightens the life of anyone who comes in contact with him (at least so far, judging by the dedication of his workers and doctors). I appreciate your recognition of people like him.

I’ve run across very few people in my life who don’t have ‘fouled up genes’ of one sort or another…whether it’s obesity, mental health issues, developmental disabilities, or just plain eccentricity, I wonder how many of us would be around if our parents and grandparents had access to prenatal tests for anything ‘wrong’.

There is another issue, if we can call it that, that we don’t discuss when discussing neuroscience — the reductionist view. Is there an “essential nature” of being human? If so, what is it? Is it possible at all that science can really distill this “essential nature?”

My view is that it cannot. A SEED magazine article suggests that art and science (this now in my words) inform each other and art has to be taken seriously in the view of science. We certainly do it in art! As science reduces us into a series of genes and molecules and neurons and so forth, art alludes to the ineffable nature/part of being human. It should point to inconclusion! Being human, in all its forms, IS a mystery. Although we know a lot more than we’ve ever known about the stuff and matter that makes us up, there is so much interconnectedness that we cannot put our thumbs upon.

“Sometimes the whole is best understood in terms of the whole,” states the SEED mag article: http://seedmagazine.com/content/article/the_future_of_science_is_art/

If art reflects the way we see the world, the way we construct science and the answers we seek is a reflection of how we view ourselves, as in this case autism. Like art, there are no resolutions, only more questions. The quest to come to one particular determinist conclusion is against our true nature, even though we long for it.

This to me is the fundamental issue that causes the angst in people and in parents — that there must be only one way to live, one way to be.

There is so much evidence from autistic people and the families who live with them that points to the contrary.

After writing that I found this blog post, http://stevens.edu/csw/?p=363, on the troubles with trying to find one “essential nature.”

Hi Estee,

I wrote elsewhere that art and science should be mutually recursive (a computer geek term :-)). Two functions are said to be mutually recursive when each makes a call into the other — in other words, when each is defined in part in terms of the other. In the case of art and science, the idea is much as you state above. (I haven’t read the SEED article yet.)
I think it’s a misunderstanding of science to say that it is reductionist. Quite the contrary, but it takes some discipline to achieve and maintain awareness of the interplay of multiple levels of organization. When I slap my hand against the wooden tabletop, I’m creating sound and touch-sensation; my hand is stopped from moving further into the table by the chemical bonds in my skin and tissue beneath it, and in the wood of the table. Those chemical bonds have the properties they do because of electromagnetic force (one level of organization down), and they are arrayed in the complex web they are part of because of the elaborate construction of proteins and other very large molecules that in turn are organized into cell membranes and other such molecular-biological structures (one level of organization up). And so on, through levels of organization even further down (the internal composition of electron shells and atomic nuclei, for example) and further up (the organization of cells into organs and autonomous living creatures, for example). The richness is dizzying. So the human mind filters and focuses and narrows the field of vision to hold and make sense of a smaller number of things. Both art and science do that, in different ways. Both are necessary, and when done right, both feed each other.

You made a good point, Phil. We can look at art and deconstruction as well. I prefer the term you used: “narrowing the field of vision.” We do it to try and expand it again, so maybe it’s more interesting to think of the process as organic — expanding and contracting. Thanks for adding to the ideas!

I’m getting really tired of the scare-mongering and misinformation that is spread in the media. It seems like every day there is a new “cause” for autism. I believe there is a strong genetic component, but it really doesn’t matter what causes it, since there’s no way to “cure” it. Everybody has limitations, some physical, some mental, and those with ASD do too.

When my son was first placed into early intervention and I was having trouble coming to terms with the possibility of an Asperger’s diagnoses, my son’s ABA therapist told me that it doesn’t matter how you label somebody, the important thing is to look at the symptoms. That really hit home for me.

As I’ve gone further along in my journey as a parent, I have also realized that the spectrum is so wide, that we’re all on it somewhere. It doesn’t matter than my son might be “autistic”, because the label is so amorphous that it doesn’t really even tell you who he is or what kind of behavior to expect.

I get treatment for my son so he can learn to be successful in the world and happy in life, but I love those little quirky things about him that wouldn’t exist if he weren’t different. I worry mostly because other children (and many adults) who are not accepting of neurological and behavioral differences will make my son feel inadequate, but to me, he seems very adequate–and if people had a different perspective, he wouldn’t have to work so hard to integrate.