IAN’S TAKE

For months now I’ve been trying to understand why there should be such a gulf between the neurodiversity community and the biomedical communities. Of course, to call either group a “community” is a bit of a misnomer. There’s enough diversity of thought (euphemism alert: “diversity of thought = rancorous disagreements) that both sides claim ownership of the adage about herding cats. But certainly the conflict between the two groups seems insurmountable at times.

I have opined before that the differences in thought between the NDers and the biomeds is really just a matter of semantics, and it really comes down to a single word: “cure.”

I have tried in the past to explain that I don’t think trying to help a child move past the more problematic aspects of autism is irreconcilable with supporting the dignity of autistics. Sometimes, however, it’s hard to be heard when the more extreme members of either community are shouting out absolutes.

One of the voices that sometimes cuts through the noise is that of Ian Parker. I really don’t know much about Ian, except that he occasionally visits this site and leaves great comments. In response to a recent post, and the comments it brought, Ian wrote the following. I thought what he said was important enough to bring it out of the comments section and put it front and center. After quoting a few of the folks who left comments, Ian wrote:

I don’t want to put words anyone’s mouth, but it sounds to me like the authors of some of the comments in this post do not see autism as a disease (in some cases the quote is illustrative, in others I’m also bringing in an interpretation of a pre-existing body of writing). The definition of disease I’m using is

“an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.”
Source: Merriam-Webster's Medical Dictionary, © 2002 Merriam-Webster, Inc.

The reason I bring this up is that I may be misinterpreting, but it seems to me that more than a few who subscribe to a ND POV often bundle together the ideas that a) autism is not a disease but another way of thinking, with b) if one believes in treatment for autism (as distinct from co-morbidities) then one is not being respectful, and c) that therefore one either wishes to deny autistics their rights or may influence autistics to feel that they are not deserving. If I’m interpreting their words correctly then I have to disagree.

On the first point, I would suggest that autism can be both a disease and another way of thinking. Some of what I’ve read suggests that a common thread among autistics is a tendency to have an impaired ability (which is NOT the same as no ability) to carry out Emotional Coordination and Experience Sharing. From Dr. Gutstein’s “Solving the Relationship Puzzle,” pg. 33: “While typical children carry out Emotional Coordination effortlessly… it is actually a highly complex process, requiring the integration of a number of different brain centers. Success requires rapid attention shifting, careful observation and evaluation of subtle emotional states, an awareness of personal space and internal reactions to a number of other elements. If at any point even one of the many components does not function, the entire process of Emotional Coordination breaks down.” Presumably this at least occasional “break down” is responsible for some of the social impairments that many with autism face.

If you interpret the condition described in the quote above as meeting the definition of a disease then autism could be classified as such, regardless of views of whether other symptoms (e.g., sensory integration difficulties, etc.) are part of the pathology or “merely” co-morbidities. I would argue that there’s nothing pejorative in the above statement, and that the described condition DOES NOT a priori diminish other cognitive or reasoning capabilities. Difficulty in integrating incoming information does not invalidate the thought processes of autistics, or render them more or less distinct, diverse, or valuable, regardless of whether the thought processes are influenced by genetics, environment, or both. The above does suggest a disease state though. And Kev, just as you mentioned in posts this week that you fear an autism = mercury link may force certain types of treatment on your daughter, I fear that “autism as merely an alternate state of being” lets people off the hook for treating an expensive disease on the grounds that it is not a disease at all.

For the record, my daughter is not part of an RDI program, although it is something that we (my wife and I -- our 29 month old daughter very much enjoys some of the activities but has yet to state an opinion) are interested in pursuing and are currently looking into.

Second, implying that calling autism a “disease” or suggesting treatment shows a lack of respect suggests that disease, treatment, and respect for the person cannot go together. I think it would surprise and anger a lot of people to hear that the three cannot co-exist. Are people with CF considered less worthy of respect? How about MS? Cancer? Angelman Syndrome? Down’s Syndrome? Depression? All of the above are recognized as diseases. Or is autism the only disease for which those afflicted are unworthy?

There is a legitimate concern that some people may see any physical, mental or neurologically based disease as rendering a person less “whole” or less “worthy.” But the issue is with the person who holds such thoughts, not with the person who has the disease. The answer is to educate and enlighten those who hold these opinions, not to deny that the disease exists and label it as an alternate way of being, giving people a way to ignore it.

Third, the linkage is made between belief that autism is a disease and the lack of rights of an autistic person, through either denial by others or lack of assertiveness due to self-worth issues. My daughter is entitled to all of the same rights as anyone else, including the right to treatment (coupled with the right to not be subjected to unnecessary or risky treatments), the right to security of person, the right to an education, and the right to assistance (equality of opportunity) to enable her to become the best, happiest, and most self-actualized person she can be. As a parent I'll do my best to teach her to stand up for herself and exercise those rights. By recognizing her autism and challenging it, my goal is to give her opportunities and choices for her to make that she might not otherwise have. I don’t believe that this will change her personality or thought processes. But I do believe that it will add to her capabilities. Not doing all that I can -- if I believe that it will help her -- would be a denial of her rights.

I will oppose anyone who seeks to deny her rights because they see her as unworthy or less deserving, for whatever reason, including her autism. But I will also oppose those who feel that her right to treatment interferes with who “they” think “they” are or who my daughter should be. I respect others’ right to treat or not treat, depending on their view of risk and effectiveness. But it sounds like not all on the other “side” are willing to allow me the same latitude, implying that I am disrespectful or want to deny them their rights if I disagree with them.