Editors Note: The following is a piece on Autism by Brandon Melendez. It deals with some of the challenges of teaching individuals without stigmatizing them. -M.P.
Autism happens. It happens and we are fascinated by it. There is a romance and a mystery to autism that makes it undeniably the developmental disability de jour of our time. Even though millions of dollars are channeled into various different research proposals, scientific inquiries, medical studies, and censuses in an effort to understand it the best we have so far is: autism happens. Of course, autism is so interesting to the majority of us because it defies our social constructs and exposes our collective binary obsession. Our society demands people be normal or abnormal; relative terms that have no definition without the other. Normal is everyone, the typical development and the general experience. Abnormal is everyone else and their cookie cutter origin myth. Of course there is no tangible, quantifiable explanation as to where autism comes from and there is great debate about what it is.
Unlike other developmental disabilities autism is not readily linked to specific events or actions, chromosomal or genetic indicators, exposure to harmful element or lack of nutrients. It creates a sense of mystery and romance around the disorder, or rather the spectrum of disorders, known as autism. This is attractive but simultaneously frustrating because we cannot easily classify and label autism. We can hardly define it. This makes it alluring, almost a novel curiosity—a jigsaw puzzle to be assembled, its image in full view, assessed and judged. However, we don’t know where it comes from and adding to that mysterious attraction is the fact that, often, it is an invisible disability.
Children with autism often look like typically developing children; unless you are witnessing a self-stimulation behavior, or are stringing together a number of symptoms and indicators you can’t point your finger at a person and label them as autistic. There’s a serious number of misconceptions surrounding autism spectrum disorders (ASD) not the least of which is that it’s fixable—as if people with autism are broken—or that it doesn’t actually exist—like it’s a fantastic hoax. What is known is that autism can be tied to familial histories, but that’s not a hard and fast rule. What is also known is that, for lack of a name, it has always been there. The term itself is less than 100 years old, but that hardly means that it’s new. Electricity, for example, existed before it was harnessed as was autism a disorder before it was differentiated from mental illness and other developmental disorders.
It’s important that we understand this fact, despite the natural pull to solve the mysteries of where autism comes from and what it actually is. Understanding this requires that we put people with disabilities, as well as ourselves, within the context of another spectrum: the human spectrum. Autism is not the result of traumatic head injury, or traumatic birth, or any other trauma; it is, like Down syndrome, naturally occurring and probably related to some genetic predispositions in parental combinations and traceable through lineage. Understanding this is key in accepting students for who they are and enables families and educators to start putting the “individual” in Individual Education Plans (IEPs). It is important that people with autism are treated as people and not as autism.
Once we’ve accepted and acknowledged that human beings fall on a spectrum, a bell curve, we can start to attack a few other notions and concepts that can only help further the understanding of people and students with autism and with other disabilities as well. When we are engaging in behavior modification and/or replacement and enacting a behavior intervention plan we aim to understand why someone exhibits a behavior, then we seek to change their behavior. In short we are looking to change their nature. We have to remember that the behavior is their natural response to invariable stimuli. Changing that behavior is us attempting, asking, or forcing these people to replace their nature with a learned behavior that is more acceptable to us. We want these students to act how we want them to act, usually because it makes us feel less awkward. It’s for our comfort.
People with developmental disabilities are not broken. They are different, mathematically required margins that allow us to define “normalcy”, a mostly subjective social construct. Asking people to change their natures is not uncommon in society, for some it is easier than others to make changes. Some require more supports than others (special education programs, respite services, vocational training, related services, etc.) but it is imperative that we understand that the changes are essentially being made for us not for them. It is an act of large scale peer pressure and while one of the mottos of modern special education recognize idiosyncrasies—not to fit round pegs in square holes. A more global perspective shows that we will never escape just that task; after all you need a diagnostic label to get services—even if that label is a question mark called “autism”.
Therein lays the root of the romance with autism. The behaviors and trappings of ASD are shrouded in a mysterious origin, vaguely understood at best and slipperily defined. People love a good mystery (though I fearfully wonder if the de jour status of ASD would decrease should a concrete causality be determined). Soon the new DSM will come out, and word on the street is that the slippery definition of ASD is going to change. In fact, gossip is that the entire diagnosis of Asperger’s Syndrome (a high functioning spectrum classification typified by generally high IQ scores and social deficits) will be removed all together. Many are worried that changes like these will prevent or otherwise cancel essential services to students and people on the spectrum—or create people no longer on the spectrum. Their label will change, their services will change, but their behaviors will stay the same.
Regardless, we search for the cause, the root of the disorder—even as we change the definitions—but to what end? To avoid it or to understand it? Both would carry serious moral implications. The former belies a eugenic motive not far removed from genocidal thought. Developmental delays are not largely degenerative so “avoiding it” is paramount to preventing blue eyes—another naturally occurring aberration. The latter, understanding, requires patience and commitment on our part. Perhaps even a reconsideration of maladaptive behavior versus socially acceptable behavior. Both are rooted in an attempt to change the natural distribution of human qualities and attributes in a crusade for homogeneity.
Does that mean teaching socially appropriate skills is wrong? Absolutely not. It is essential. No matter how scientifically we look at the issue, social constructs are effectively as tangible as a ton of bricks. Once confronted with adverse reactions the person with disabilities will feel the alienation and stigma that their different behavior will ultimately incur from peers and strangers. It will hurt and confuse them. Most people have neither the patience nor the inclination to understand people with special needs, and so it is imperative that they learn to navigate our society in order to have successful lives. It is nonetheless upon our imperative and for our comfort that they do so. The endeavor is aimed at them gaining our acceptance, and avoiding our disapproving glances. It is the majority that is unaccepting.
Special education is important. It’s important to give all students a fair and appropriate education. Integration is equally important, but it would do us “typical” folks well to remember that sometimes we have quirks, or bad habits, or commit acts that we try hard to fix, remove, and remediate. It’s hard to change our own behaviors, but we work hard at it and remember that we’re only human; we’re imperfect and things happen. Well, autism happens too. It is part of the human experience no matter how it’s labeled or where it comes from.