First, no harm

First, no harm: Preferred and Non-Preferred as Harmful Terminology in the World of Autism Spectrum Disorders
Kate Cumiskey, MFA
12/15/2015
I’m going to begin this article by assuming two things: Assuming that the study of Autism Spectrum Disorder, or ASD, is relatively new. I was going to say, “a relatively new field,” but in keeping with the spirit of accuracy I am trying to achieve here, let’s stay away from that. Many fields of study are necessary to increase our understanding of and treatments for ASD. Secondly, let’s assume that I am correct in positing that some of the language which permeates the culture of ASD professionalism, including but not limited to education, medicine, psychology, and law, is harmfully inaccurate and even incorrect.
The problem is actually quite simple. When the language used by the professionals is incorrect the effects of designed treatments, interventions, and discussions can be harmful and at best are often wide of the mark and inefficient. Although many professionals in the field of ASD are very professional, if they are given bad tools they cannot do a good job.
Let’s start with the term nonpreferred activity. This is used throughout the ASD world. You will hear it in presentations to parents, professionals, and persons with ASD. You will read it in scholarly articles, hear it on the news, hear it discussed at Individualized Educational Plans, or IEPs. Language guides not only action, but more importantly, perception. When we hear the word “nonpreferred” what are brains tell us is, “doesn’t want to”, but because it sounds better, more professional, smarter, we are soothed into a false and dangerous sense that since the experts say it, it must be so. So, before discussion even begins surrounding the person or persons and activity or activities being addressed, we have made the assumption that there is a choice being made, here.
We have advanced, even in this new arena, beyond this language we use for it. We now know that when demands are made of someone with ASD (and one of the difficulties is, the response varies not only by individual, but by individual demand and even presentation of a demand couched behaviorally speaking as a choice traditionally referred to as preferred and nonpreferred) a physiological response happens in the body of the individual which has nothing to do with choice. In fact, the opposite is true: there is no choice. The body has its own demands. The fallout from this is obvious. The individual is being asked or told to make a conscious choice to do something, the body is dictating an unconscious response or responses. The resulting disregulation is not only physical, but psychological. The resulting harm not only to process and product, but to relationships, ego, and self-esteem can be permanent. There isn’t room for exploration of that, here. Let’s stick to that one phrase for now.
So, what sometimes happens in the body of an individual with ASD when presented with a demand or task? Well, basically it is the same response when a neurotypical, or a person on the Spectrum for that matter, is presented with aversive stimuli, or severe punishment. “As humans, we all have the same mechanism of responding instinctively to potentially dangerous situations by activating our nervous systems. The fight-or-flight response releases adrenaline into the body, pumps blood into our muscles, and increases heart and breathing rates to prepare us to either run away from danger or fight it off. Most neurotypicals, with fairly efficient regulatory systems, are able to ponder the accuracy of this primitive response before they react. However, for people on the Autism Spectrum the actual fight-or-flight reaction (that is hitting the perceived “predator” or bolting away,) has often already occurred before they think about it.” Chantal Sicile-Kira, Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders (Berkley Publishing Group, 2006)
So, the presentation of these nonpreferred stimuli becomes highly unethical. Below I have linked an article by Kim Davis which supports that demands produce anxiety in individuals with ASD, and the article links several others which are worth contemplating.
What to do? I propose, we begin with language. And we ask. Let’s ask individuals who experience these responses what they have to say about this issue. Since the first individuals in the English-speaking world with the form of Autism formerly known as Asperger’s who were identified as very young children have reached adulthood, let’s talk to them. Let’s also open a discussion with those individuals who were diagnosed as adults. Why ask adults? Not because what younger people can tell us isn’t important—but because we, as neurotypicals, take adults more seriously. Let’s ask them, what do you think of the clinical term nonpreferred activity in relation to ASD treatment and planning? And, what terms would you say are more accurate for what happens to you in these instances? Let’s listen.

http://www.iidc.indiana.edu/index.php?pageId=3553

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