"How Should I Know?" - My Personal Expression of Autism in Sociey

How Should I Know?

During my last few weeks in my introductory drawing class at Quinsigamond Community College, we were required to make, among other things, a composition using whatever techniques we have been learning up to that point as part of the final exam. Even before then, I had an idea of what I wanted to make; this was an opportunity for me to create an expression of my view of autism in our current society. After much planning, I came up with the composition you see here, which I personally called How Should I Know? I dedicate this entry to discussing the details of the composition, what those details represent, what message I am attempting to convey.

The figure in the center embodies an autistic person (age, gender, race, etc. are unknown), strapped face down to a board and tortured via electrodes attached to the body. The autistic individual is being tortured and does not know why it is being inflicted as the people who are doing it cannot be seen. The dome encases the autistic person, isolated from the people that represent society. The viewer can see their heads but cannot see their bodies, as they are obscured in black. The viewer can only guess as to what they are doing. Yet the wires connecting the electrodes are clearly being seen coming from the obscured bodies. In short, society has isolated the autistic person via a dome and is punishing the him/her for reasons that are not made clear, neither to the person in the dome nor to the viewer.

I modeled the figure in the center from a YouTube video, which shows security camera footage of an autistic teenager being restrained and shocked at the Judge Rotenberg Center in 2002. As most people who read on the Internet know by now, the Judge Rotenberg Center is a special needs school that employs aversive therapy practices, mainly consisting of electric shocks and physical restraints, that are not medically valid and are tantamount to torture. The image of a helpless autistic individual, regardless of age, being restrained and shocked for a behavioral violation he or she does not know, understand, or has difficulty comprehending is an especially disturbing one for anyone to see, which is what I intended to replicate here. In order to make the electrodes, I taped four security tags designed to prevent book theft, one for each individual limb. Using a very basic half circle drawing in conjunction with the cross hatching technique, I created the dome to symbolize the separation and isolation of the autistic individual from society. To create the people outside the dome, I used a few Facebook photos as models and copied the bodies of the people in it via the gesture drawing technique. Next, I used a black conte crayon to obscure the bodies just below the heads, which are intentionally left faceless. This is intended to have the view guess what those people are doing in social and behavioral terms. For the final touch, I used a fine point pen to create the wires that connects the people outside the dome to the electrodes of the person inside the dome in order to reinforce the idea that the autistic person is being punished by society for not conforming to social and behavioral norms which the latter takes for granted but are not made clear to the former.

The message I am attempting to convey with How Should I Know? is that autistic people, myself included, are being ostracized by mainstream society for not conforming to unwritten social norms; for not talking, behaving, and socializing in a similar manner to everyone else. Consequently, this has a negative effect on the autistic person's self-esteem, which in turn affects his or her ability to function well in school, at work, and generally any place around other people. I only hope that anyone who views my composition gets and understands that message.


The Judge Rotenberg Center: A Growing Hope for Closure

Suppose you are a parent of a son or daughter with autism (ranging from mild to severe), mental retardation, a mental health disorder, or some form of emotional disturbance. That child has been displaying behavioral problems that are destructive, socially unacceptable, and beyond your control, like screaming wildly, repetitively banging his or her head against the wall, running into walls, biting his or her hands, or assaulting other people for some incomprehensible reason. Such destructive behavior had constantly landed him or her into trouble at school and in society. As a result, the child gets expelled from school, other children distance themselves from him or her, and your friends and associates have doubts that your son or daughter will be able to have a future let alone managing his or her life alone. You search high and low for a solution to your child's problem. You take your son or daughter to counseling and psychiatric sessions and were given prescription drugs in an effort to control his or her behavior. Yet the child appears to be doing worse than before due to side effects of the drugs. Then one day you learn of a school located in Canton, Massachusetts (a town located 20 miles outside of Boston) called the Judge Rotenberg Center (JRC). It is a special school for children and young adults with various disabilities and behavioral problems that specializes in a unique form of treatment that guarantees a better life (or so they say). You became interested, so you decided to visit the center for more information. On your tour, you learn more about what they call aversive treatment, which is behavior modification that uses electrical shocks and physical restraints to punish destructive behaviors and reward positive ones. You were also shown slide shows, consisting of 'before' and 'after' photos, that appear to demonstrate the effectiveness of the treatment in improving the lives of all problem children. Convinced and seeing no other alternative, you sign up your child for the program offered at the JRC. Six months pass and you hear reports from the center that your child is slowly but steadily improving. However, you also hear stories of children and young adults suffering from pain, humiliation, fear, and scars both physical and psychological as a result of the JRC's behavior modification program. You also get a call from your son or daughter a couple of times, hearing him or her sob as he or she talks about the pain and deep skin burns from the electric shocks, the countless hours of being held in restraints, how everything he or she does and says is being monitored, and the people who are doing it to him or her. Those few calls suggest that your son or daughter is being tortured. You decided to visit the child to find out what has been going on for the past six months. Would you continue to support the Judge Rotenberg Center after learning the stories you have been hearing turn out to be true?

For  some families who see no other option for treating the most severe conditions of their children, lawyers representing the JRC, and others connected to it, the answer is yes. For the ever increasing opposition, the answer is no. As an autistic person striving for a productive independent life, I support the latter. Ever since I first became aware of the center's existence a few years ago, I've written a few blog posts for The Voice of Heard on the JRC, providing information on the JRC's practices and updates regarding where the issue was standing at the time of the original writings as well as expressing my calls for the center to be closed permanently for their methods of behavior treatment that are tantamount to torture. Yet even after amassing a large amount of evidence of ethical violations, including security footage from the center itself that shows an autistic boy being restrained and shocked, and getting an overall rating of 1 based on 26 reviews on Google in the past few years, the Judge Rotenberg Center still remains open due to the influence of the center's lobbyists and the vocal support of families who believe that the behavior modification treatments have saved their problem children's lives. True action against the JRC is yet to be taken. The least I can do to support the cause is provide some new updates. Just last year, a lawyer for the JRC defended these treatments as "humane" and referred to a report on the treatments made by the Mental Disability Rights International (MDRI) a few years ago as a "joke." A few months ago, a letter from an autistic survivor who attended the JRC was published. To say the least, the letter describes the most disturbing account yet. In February, a few actions were taken by Massachusetts and New York against the JRC that may have turned the tides against it. The Patrick administration filed a motion that challenged a 20-year-long decree that has allowed the center to use the electric shock treatments. New York City Counsilmember Vincent Gentile called for all children and adults from New York, which count for half of the student population, to leave the school. It is not yet certain when these actions will be approved and take effect, but it is clear that a few months prior to that, the Centers for Medicare and Medicaid Services are no longer allowing federal money to be used for anyone living at the JRC and that the US Food and Drug Administration has issued a warning on the center's use of the devices they used for the shocks that were never officially approved for medical use. The most significant update from that month, and the most important piece of information I have found on the matter thus far, is a long expose of the JRC by The Boston Phoenix, written twenty eight years ago when the JRC was known as the Behavior Research Institute (BRI) located in Providence, Rhode Island before moving to Massachusetts and the aversive treatments consisted of excessive pinching, spankings, water spraying, muscle squeezes, brief cool/cold showers, and applying ammonia to the nose and harsh tastes to the tongue before the electric shock treatments were devised.

Even after all of the bad press and mounting evidence of ethical and legal violations being committed, I still find it hard to believe that the Judge Rotenberg Center is continuing to run its operations with the support of its lawyers, lobbyists, and parents who see no other option to deal with their children with mental, emotional, and behavioral problems that simply cannot be "fixed." But the recent developments I have described here represent a growing hope for its permanent closure. From a journalistic perspective, I admit that I have been rather personal in my Voice of Heard posts about the JRC. But as an autistic individual, I should be since there are more constructive alternatives to deal with autism in speech therapy and education, some of which I have experienced first hand. That experience had made it possible for me to make friends with other people (although I admit I have yet to lead a social life), be self-sufficient around the house, successfully navigate public places, get a college education, and pursue a career; all of this constitutes a productive and independent life something that people should help anyone with any disorder, autism and otherwise, to pursue without having to resort to punishing them for behaviors they have difficulty controlling. But the fact of the matter is that there are constructive ways to deal with autism across the entire spectrum as well as other mental, behavioral, and emotional disorders; the ones that are offered at the Judge Rotenberg Center are not among them.

Update August 17, 2014: In recent news, the FDA launched an investigation into the JRC's behavior modification treatments. It remains to be seen if the FDA officially rules them as unfit medical practices. More on that in a future post.

Autism: Being Aware of...What Exactly?

Autism. A developmental disorder that affects that person's ability to communicate and socialize with other people, which he or she finds difficult, and also causes the person to think in literal and concrete terms, have limited to no control over their body movements, sometimes find comfort in rigid routines, and engage in stereotypical behaviors, such as flapping arms, hitting an object over and over again, and talking to him/herself; in short, autism affects the person's ability to function in society, depending on the spectrum. The spectrum, or severity of the disorder, ranges from mild to severe. For those with mild forms of autism, they are able to assimilate in society via family, friends, school, and the workforce. In more severe cases, an autistic person is unable speak and express him/herself, is extremely sensitive to light, sounds, and crowds, and has behavior problems that result in self-injury, consisting of, for instance, head banging and hair pulling.

Ever since Leo Kanner discovered it in 1943, many people have been unsure as to what to make of autism and how to deal with it. Numerous studies in science, medicine, and social psychology have been conducted to examine how autism has been occurring and look for ways to deal with it. At one point, it was believed that children develop autism as a sort of coping mechanism due to a lack of emotional attachment to cold uncaring mothers, a theory which has since been debunked. Some people believed, and still believe, that autism was a side effect of a mercury-based preservative found in vaccines, an emotion-fueled dogma that has been consistently debunked by the medical community. There is now growing evidence that autism is rooted in genetic factors. Yet with all the progress being made in the science of autism, there is still a debate as to what can be done to improve the lives and well being of autistic people. For example, there is some confusion in the use of the terms "autistic person" and "a person with autism." An autistic person is someone who is born with autism. When someone is referred to as "a person with autism," it implies that autism is something that can be removed like a splinter embedded in skin; an emotional shell that protects a "healthy and normal" human being that needs to be cracked; and an inhibiting disease that needs to be cured. Of course, that may be a minor thing. But such simple terms are just the tip of the iceberg. In many attempts to raise awareness of autism among the general public, the information that comes from research studies and parent-led advocacy groups and gets transmitted and filtered by the mass media, consisting of newspapers, magazines, radio broadcasts, television, movies, books, etc., has been affecting, for better or worse, how autistic people are looked upon in society. The debate has also been affecting, both directly and indirectly, the quality of life autistic people lead as children and adults, the opportunities in employment and education being made available to them, and how their dignity as human beings gets defined in mainstream society. In short, autism awareness as it is now has been, for all intents and purposes, a problem that leads to inaccurate myths about autism, eight of which I have personally debunked a few years ago. In order to demonstrate a basic understanding of this problem, I will briefly go over a few key components of the mass media that affects how society perceives autistic people: movies and images accompanying news stories. In movies featuring autistic characters like Rain Man, Mercury Rising, and Mozart and the Whale, autistic people get depicted as having limited to no emotion and possessing either extraordinary (almost supernatural) abilities such as pattern-recognition, perfect memory, and complex mathematics (leading to the savant stereotype) or diminished intellectual capacity. When images are featured with news stories about autism, they tend to portray autistic children as fragmented and imprisoned by the disorder. The words 'fragmented,' 'imprisoned,' and 'disorder' are just a few of the many key words that are part of the problem of raising awareness of autism.

When it comes to even talking about autism, the developmental disorder is often spoken of as one that diminishes the quality of the person born with it as a human being, a belief that some people are striving to debunk by not even calling autism a disability. Words, besides the ones I just referred to, that reinforce this notion include 'deficit,' 'impaired,' 'retarded,' 'devastating,' 'destructive,' 'puzzle,' 'illness,' 'epidemic,' 'broken,' 'restricted,' and 'limited,' among others. When talking about autism in this context, it is like saying "be aware that [so-and-so] has autism, so he/she might end up destroying something;" or "be aware that it may not be easy to talk to this person since he/she has autism;" or "be aware that he/she may get into a temper tantrum if you [insert any action here] because of his/her autism;" or "be aware that he/she may get upset over something you say that you usually find funny or friendly." According to Lydia Brown, an autistic rights activist, society tends to use "disability" as a sort of social and cultural antibody, a means to label, ostracize, and alienate anyone who does not behave, act, think, communicate, and socialize in the same manner as everyone else.

In conclusion, raising awareness of autism is not enough and is doing little to help autistic people of all ages have a better life, even as more research studies are being conducted to better understand the developmental disorder, which is a good thing. As an autistic man, I call for drastic changes in how the public becomes more aware of autism, understands it, and deals with it. The first step would be to change "Autism Awareness Month" to "Autism Acceptance Month." The second step would be to find ways in which children diagnosed with autism receive the best education and social communication training possible. The third step would be to support autistic people as they make transitions to a productive and independent life. It may have been too late to do the first step last month. But with enough public support, we as a society could change the way in which autism is discussed and accept autistic people without labeling, ostracizing, and alienating them by granting them the right which most people in this country take for granted: the right to lead better and more independent lives.