Victims, Survivors and Responsibility

Today, it is very fashionable and "in" to claim to be a victim or a survivor of some adversity or another. In fact, this practice has been in vogue for decades, for quite a few years ago, I had read a book called A NATION OF VICTIMS. The author made valid points though I felt quite unsettled by much of what he asserted, and I'm sure that many, maybe most, who have read that book would be similarly affected. Indeed, we should take to heart the fact that these terms have been widely abused by many of us to duck responsibility for our actions, to gain sympathy or attention, and/or to reduce or even eliminate expectations of us or consequences for our misdeeds. It is also politically correct to never blame a personal called a victim, for anything done when victimized. "Playing the victim" is a derogatory and accusatory remark directed at anyone who is seen as "whining" about his or her "lot in life" or "bad luck."

In the current highly publicized court case, we who have been even casually following it have noted how the defendant, Jodie Arias, has been claiming to be a victim/survivor of both child abuse and of intimate partner violence. Her claims have been exposed as false by prosecution character witnesses, by the prosecution expert psychologist and by two siblings of Travis, the murder victim. Yesterday, in profoundly moving, powerful victim impact statements, Steven and Samantha Alexander paid tributes to their murdered brother, what he meant to them and how his terrible loss has devastated every area of their lives and the glue of their family life. In this case, the defendant, Jodie, has been claiming abuse, as a child and as an adult, to avoid responsibility for her actions and their consequences via gaining sympathy from the jury who had not bought her story. We know this from their "Guilty of First-Degree Murder" and "Unusual Cruelty: Proven" verdicts in the guilt and aggravation phases of this trial.

This causes me to ponder and address the issue of autism and how this abuse of the words "victim" and survivor" have created a backlash against those in the autism community and against many in the larger disability community. Let me illustrate. The accusation is often made that many in the autism community use the autism diagnosis to evade personal responsibility. This accusation is made, often, of parents who seek (and get) the autism diagnosis for their children. "You just want people to feel sorry for your child," "You want sympathy for yourself," "You are looking for excuses for your poor parenting," and even,"You are looking for an autism diagnosis to get government benefits for your child." This same accusations is often made of adults who seen an autism diagnosis later in life. It is for this reason, among others, that there is still controversy about neurological conditions with behavioral symptoms, like Autism Spectrum Disorders and Attention Deficit Disorder or Attention Deficit/Hyperactivity Disorder and other such conditions. Parents are sometimes accused of using their children's diagnoses as "chemical babysitters" or as "substitutes for good parenting" when medications or therapies are used as treatment options.

There is also the practice of inducing false memories of child molestation, which is extremely scarring, with psychological effects which stay with its survivors for life. There have been cases of parents who have lost children to false allegations (whether of false memories or other things) to false accusations of child molestation. Workers with child contact have also lost their jobs for the same reasons. We all have read of numerous women who have brought forth false rape accusations against men. Many years ago, I read a book by a woman, called FORGIVE ME, who did just this; as a result of her Christian conversion years later, she recanted her story to free the innocent man who was sentenced for a rape he never committed. Any of us who even casually follow the news, hear of false rape accusations. Why are such accusations made? It is no doubt because the false accusers want sympathy and attention, as our society sympathizes with victims of rape, whether in childhood or as adults.

We all are aware of how many, many scams are brought about by playing on our compassion and generosity, whether you are talking about people falsely claiming to be cancer victims to raise money for themselves or are talking about numerous scams exploiting community tragedies to profit off misfortune. Many years ago, a woman claimed to be a 911 survivor, actually became a leader among 911 actual survivors, and raised money for this community and attracted much sympathy and accolades for her supposed "courage" and "strength" for all the "horrors she had survived." This was until one person was observant enough to see that this lady's story did not "add up" and after checking into matters this lady was exposed as a fraud. In recent years I have known of a number of women who had claimed to be cancer victims and had garnered much public sympathy and donations. Many people falsely claim to be victims, whether of natural causes like cancer, or of unnatural causes like rape--all to get attention, sympathy, even money.

Yet this very frequent practice of falsely claiming abuse, whether to get money, attention, sympathy, or to evade society's expectations or consequences, backfires. It causes a backlash against genuine victims and survivors of traumas. Those who are truly victims, whether of any form of abuse in childhood or adulthood, become more and more hesitant to share their stories and to make police reports. This is because they do not want to become re-victimized through not being taken seriously or believed or blamed for their victimization. This practice of false victimization has spawned a recent petition to create legislation calling for criminal background checks on all those who come forward about abuse. And then think of the devastating effect false abuse allegations have on those whom they are made against, destroying reputations and putting innocent people in jail, prison, and even on Death Row. While we are rightly admonished by child advocates to report even suspected child abuse, we are wise to ensure that we are able to back up our reported suspicions with a statement, an action, an incident, that is a basis for our suspicions.

True and actual victimhood does not diminish our responsibility though it lessens it and makes our actions more explainable. We so often see this in countless people who have survived childhood or adult adversity and have emerged to become positive, strong, caring, even successful. I have heard it said, several times, that "Prosperity is a more severe test of character than poverty (or adversity) is." The Scriptures, over and over, from cover to cover, tell us that spiritual growth comes through suffering. We know this because of how so many recent tragedies have brought whole communities together, whether weather disaster, shootings, bombings or other tragedies. The one perfect Person Who lived, Jesus, also suffered more than any other human during all the events leading up to His trials and His death in what is known as "Holy Week." Throughout that time alone, Jesus suffered the betrayal of a very close friend, eventual desertion by all His friends, false accusations, mockery, injustice, and every form of abuse in its most severe form. He suffered extreme physical, emotional, and spiritual pain. This all means that we do not have to be prisoners of out pasts and also, that we cannot use even actual abuse to excuse our misdeeds. This holds true whether we are talking about medical conditions where we have reduced control over our behavior, like Autism, or life events, like abuse or illness.

Autism: What Is In A Word

          Many years ago, children and adults who would have been diagnosed with "emotional disturbances," "mental illnesses," "mental retardation," "personality disorders," or some other unsavory label, or who were just written off as plain weird, are now being diagnosed with "Asperger's Syndrome," (ASD),  "Pervasive Development Disorder-Not Otherwise Specified" (PDD-NOS), or "High-Functioning Autism" (HFA). This chance in diagnosis (dx) has meant the difference between success and failure for so many children, teens and young adults, who, like my own daughter, have been able, because of such an autism dx, able to succeed with supports that were unavailable to those of my own (and earlier generations) who often experienced failure and all the baggage that comes with it. A whole new generation have come to see their differences as a result of different wiring and that while they have very real challenges, that they also have very real potential. Where the earlier model of special education was one of focusing on deficits and defining students by their disabilities, the current model is one of teaching based on students' stengths and helping them to overcome their weaknesses without defining students by these weaknesses.
          But currently, the American Psychiatric Association (APA) want to change that; for years they have been working on a new DSM-V that would revise the criteria for obtaining an autism dx. Only recently has the APA made their proposed changes public. Therefore, those in the autism community are now up in arms because many of us are very much concerned about the possible fallout of this revised DSM-V. Why does this matter so much to so many of us? many of you may wonder. What is the fuss all about? Let me tell you what is behind our deep concern.
          The official autism spectrum dx of a high-functioning sub-type of autism matters because many children, teens and young adults who are dxed with a high-functioning autism sub-type, would likely lose funded services and supports as well as legal protections, especially those under the Americans with Disabilities Act (ADA). Many of those in the generation since after 1990, when the autism spectrum began to be used as an official dx, have experienced access to support services, opportunities, legal protections under the ADA and success. My daughter is among those in this generation, being on her school honor roll this past semester. And in addition, many children, teens and young adults whose supports, benefits and legal protects are based on their dx, would suffer substantial loss. Talk about sliding backwards in time! Future generations would, again, have to grow up as I did and as so many others have had to grow up, being misunderstood, bullied, shamed and belittled into believing their challenges are due to stupidity, badness, or being damaged and broken, rather than because of different wiring. Finally, the proposed revisions in the criteria for the autism dx would be a slap in the face of many of us adults who were "born too early" to grow up with an official dx or to even have a concept of it; because of the loss of the dx we would lose our explanation and answers about our often puzzling, painful pasts.
          Now I'm aware that many people do not even believe in the concept of the autism spectrum, ASD, HFA or PDD-NOS. Some believe that that the autism epidemic is actually a dx epidemic or the latest fad in "pop psychology" that will die out and be forgotten. I know that many people, whose thinking runs along the lines of "pulling yourself up by your own bootstraps" or who are part of the "cowboy culture" may welcome the tightening in the eligibility to get an autism dx. "You are looking for an autism dx to hide behind to find excuses for the way you are," many adults who are fortunate enough to have access to an autism dx screening, may be told. "You are looking for an autism dx for your child so you can excuse your bad parenting," many parents who fight for an autism dx for their child, may often be told. And indeed, there are those successful adults on the spectrum who enjoy success and fulfillment in their personal lives and careers and for them, seeking a dx of autism may not be in their best interests because of the social stigma of the dx. But for my purposes for this blog, let me share my own story to show you that,m whether diagnosed or not, the challenges of ASD/HFA are real and can be painful or intense.
          I grew up in the 1960's and the 1970's, well before the autism spectrum was conceived. From the beginning, it was clear that I was different. I behaved differently, moved differently and learned differently. I had tantrums, cried nonstop, fixated on certain objects, and didn't relate to people. And I began to have seizures; as a child, I was diagnosed with epilepsy. According to my records, I had "behaved so badly" that my mom, stressed-out, took me to a professional, who pinned on me the dx of "obsessive-compulsive neurosis" and "emotional disturbances" and I carried those labels, among others, for many years. None of such labels provided me any legal protections or support services beyond inappropriate psychiatric services and equally inappropriate special education placements. My childhood is a blur of memories of adults spanking me, slapping me, yelling at me, even at times putting soap in my mouth or locking me in closets to "teach" me to "stop being bad and spoiled." As a younger child, I was placed with "the real disabled children" and was told that I was among them only because I did not "act like other kids" and "we don't know what to do with you." Also, an official dx would have much reduced stress for my parents, especially my mom, who really loved me but who did not know how to help me become successful, happy or confident. In later childhood and especially in my teens, I suffered vicious bullying for being "different." My peers called me "crippled," "klutz," "retard," "ugly," "stupid," and things that are not fit to be printed. Also, I often suffered physicial bullying. Though adults were clueless about the nature of my challenges, my peers did not need an official dx to identify me as different and to respond to this knowledge by theire bullying. I found myself in and out of special education; after a year of vicious bullying, I found myself in special education for the remainder of my school career. Today, I carry the scars from these years and though my challenges are modified and controlled, they are still there; they affect how I relate to people and how they see me. None of this is a figment of my imagination. It is real. I owe my current self-understanding and hope for the future to my daughter and to her official autism dx, as it applies to my own life.
          The American Psychiatric Association wants to revise the DSM-5 criteria for the autism diagnosis, admittedly, to cut costs. Fot to provide services, benefits and legal protects costs money; but no school district or government is going to want to spend anything on a child or adult without any official dx. Folks, even if you are not in the autism community because you aren't aware of people that you know who are autistic, think again. Most of you will likely know people, personally and/or professionally who are on the spectrum, whether dxed or not, but who will not disclose their dx to you. Why? Because of the social stigma of autism, they fear misunderstanding, rejection or discrimination. And this proposed revision in the DSM-5 would only make things worse. And then there are those of you who may wonder if your loved one is on the spectrum or want to obtain autism screening for him or her; a few of you may want such an autism screening for yourself because of your own pasts; do you want things to be made harder because of tightened criteria for autism? The dx of autism is stigmatizing, but not as stigmatizing as many other labels that were used in the past. This autism dx empowers many parents to effectively help their ASD/HFA children grow up to become effective, confident, responsible, successful people with many support services, legal protections and guidance. The autism dx empowers adults fortunate enough to obtain it, to to understand themselves and to deal with their challenges and to gain the motivation and incentive to better their lives and to reach out to other people who share the same dx. The APA's concern to cut costs is understandable; they have expressed regret for "unfortunate consequences" of their decisions and that much of our concerns are unfounded. But should $$$ come before the lives, happiness and well-being of people and their futures?
          I will provide for you links to a few petitions where you can read the petition letters to the APA to educate yourselves about this if you need to and then to sign the petitions and to share them; I'll also provide links to autism resources.
          No, autism is not just a word and in this case, talk is not cheap.

http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5
This petition has been put together by GRASP, an official nonprofit for teens and adults on the autism spectrum; please read the petition letter to the APA. Then sign this petition; you can increase your impact by adding your thoughts and feelings about autism and any experiences you have had with it. Then sign it and share it!

http://www.change.org/petitions/stop-the-change-in-definition-of-autism-for-those-on-the-spectrum
This is another petition that aims to collect 1,000,000 signatures. Please read the petition letter, sign the petition and feel free to increase your impact by sharing your own thoughts and feelings and, if applicable, your experience with autism.

http://www.grasp.org/  This is the official nonprofit for teens and adults on the spectrum of autism.

http://autismabout.com/od/whatisautism/tp/topten.htm
This is a comprehensive resource containing links that educate the public about all matters in the field of autism. It contains tabs leading to other pages.