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.
Thursday, January 26, 2012
Monday, January 23, 2012
Bullying, Bullycide and Bully Survivors
It is heartening that bullying is getting so much awareness and that so many resources are being poured into preventing bullying from being done to more victims, helping and supporting current victims and especially, motivating school children to, themselves, do much more to end bullying. Maybe I'm missing something, but it seems that we keep hearing about as many bullycides as ever. And it seems that even in these tragic cases, the victims were heard to say that they felt that their bullying was not taken seriously by the adults in their life. And so they felt that they had no option but to end it all. It seems that it takes bullycides such as these to revive and awaken our passion to prevent and end bullying. If bullying does not "drive" a victim to suicide, it simply is not taken seriously. This frustrates me.
Before I continue, I cannot image the inconceivable grief (and maybe anger and guilt) of the families who have lost children to bullycides. I'm very sure that such families, especially the parents and other adults in these victims' lives, are in incredible pain. This is one more reason to do all we can to prevent and end bullying, because when it ends in bullycides, the loved ones who are left behind will experience a pain that will never end. If any family members or other have lost loved ones or friends to bullycide, my heart goes out to you. To lose a child is tragic enough but to lose a child in this way is especially heartbreaking.
Laster year, I had written a couple of blog posts during the five-day "Bullying Awareness Week" that was held then. Since then, I have heard about a number of bullycide stories, on the average two or three a month, maybe more. Always and without fail, it seems to take such tragedies of live lost needlessly, to revive our concern and awareness about bullying. I never fail to grow sad, frustated and even angry, to see that such bullycides are needed to see bullying for the serious thing it it and that it is not a "rite of passage." I will keep harping on this whenever I discuss bullying. These bullycide victims, without exception, took their lives because they felt that their bullying was not being taken seriously! I know that this sickens most of us but still this bullying does not seem to be going away. How could these children feel so totally hopeless and despondent and alone, that they saw suicide as their only option? Was there no one that they could turn to? Or felt they could turn to? Is it because they are getting some unspoken messages from home, school and society that that life is meaningless and that if it becomes too difficult, that it is not worth it to "hang in there'? That they themselves are not worth it? Because we have become a society that no longer looks to God as our Hope and Help, and instead turn to numerous substitutes, we should not be surprised that children often get giving up is an option for them. Also, children's brains and self-concepts are still being formed and so if it is being pounded into them that they are worthless, damaged, inferior, defective, ugly, different, bad or stupid, it may take a lifetime for them to overcome these messages. I know this from experience! But children don't realize that, even if they may have to carry the scars of childhood experiences, that it can and is very often done; they can transition from victims to survivors as so many have done! No one wants to be a victim, but when one is able to "hang in there" and make the transition from victim to survivor, it is a matter of pride.
I remain haunted by the recent case of a young boy who ended his life, allegedly because of bullying, even though his school denied that such bullying happened. After an investigation, Law Enforcement saw "no evidence" that bullying has taken place. But I wonder. Would a boy take his life for nothing? Does his tragic case indicate that even now, bullying is not being taken seriously enough, at least by some schools, adults and parents? Whatever the actual story of this boy is, the one redeeming value of bullycide victims is that they compel us all to take bullying serious enough to act to prevent and end it. But this is a source of frustration to us who also have endured bullying, vicious bullying, that has left lifelong scars but it was seen as a "rite of passage" and as a "kids will be kids" thing or as a minor inconvenience. But are the tragic stories of bullycide victims more compelling and more important than those of us who lived through vicious bullying experiences and often stemming from differences that were stressful enough in themselves? Recently, I read a nasty Facebook comment on an anti-bullying Facebook page, that was directed by one person to another who was writing about his/her bullying experiences growing up; this person was accused of "whining about the past." I have been told, "Don't share your bullying story because then people will see you as a loser." But if children do not hear such survival stoories from others who have lived through it and have emerged as survivors, how will they see that it is possible to live through their own experiences and not only survive, but go on to become a blessing to others?
Yes, much of the bullying being done today is done to all sorts of children, not only to those who are seen as "different," "inferior," or "damaged." When I was growing up, I did not see bullying being done to my peers who were popular, talented, athletic or who "fit in" and were "cool." I experienced such bullying, however, because I was indeed seen as different. This bullying seemed even worse because the concept of the autism spectrum did not exist and so I had no explanation for why I was being singled out as "different." Adults saw me merely as a "broken" normal young person who was a "problem child," and has a "nervous" or "emotional" problem. And so I spent my school years in and out, but mostly in, special classes and special schools and a couple of residential settings. However, my peers did not need an official diagnosis to single me out for bullying because they identified me as "different." When I went to middle school, the bullying that was done to me was bad enough to get me placed in special education for the rest of my school years; since no resources existed then for bully victims, no one knew how to handle my bullying and so I had to go to special education, which back then, was more stigmatizing and disempowering than anything.
Today, much bullying is done not just becaue of intolerance but because children are jealous of each other. Therefore, children who would not have been bullied during my growing-up years, are vulnerable to bullying today, including those who are talented, popular, athletic or attractive. Yes, children are still bullied for being different, as is proved by the media coverage of those who are bullied because of homosexuality. Whatever our view of homesexuality, we should condemn bullying or abuse done to people because of sexual orientation, as we should do when bullying or abuse is done for any other difference. People who show or endorse hatred for homosexuals, are dragging God's Name and the reputation of His true followers, through the mud. They are totally missing or misunderstanding God's love and His grace as His message that ALL of us are sinners--heterosexual or homosexual. Bullying or abuse to anyone, online or in-person, is also a sin!
And we should not see bullying as just a "kid thing" or a "school problem," either. For bullying is also done in the home and in the workplace, and cyberbullying is experienced not just by children but by adults, too. In the case of adults, it is just called by a different name--harassment. But it is the same thing. The only difference between bullying and abuse is that abuse is done by those in power but bullying is done by peers; therefore, bullying is often not taken seriously. But in the case of abuse and bullying, it seems that it takes death, whether by murder or suicide, for either to be taken seriously. It seems that it takes tragedy to compel us to take any issue seriously. Rape was never taken seriously until rapists were exposed as murdering their victims and were not content with "just raping" them and letting them live! Domestic violence was also not taken seriously until we heard about parents, spouses and partners killing their victims. Maybe ours is just an age of awareness and resources are compared to when I was growing up. As much as we deplore how bullying and other crimes have entered the digital age, it is because of these same computers and other technology that we have so many more resources and so much more awareness. It is a mixed blessing.
One good thing about all of this is this: We talk about it and talk should lead to action. Below I will provide links to resources that empower us to help prevent and end bullying as well as sites for those who carry scars from bullying from the past.
http://www.stopbullying.gov/
This is the official government-sponsored website that provides a wealth of information and guidance about how to prevent and end bullying.
http://www.stompoutbullying.org/
This website is for a nonprofit that provides comprehensive services, including a hotline, for bully victims. The website is interactive and seeks to involve young people in the fight against bullying, as they are the ones who ultimately hold the key to preventing and ending bullying. As I survey this site and read about its services, I always think, I could have used this as I was growing up!
http://peerabuse.net
This is one website that provides support and a forum for those who, as adults, carry the scars from past bullying. It is for anyone who has lived through bullying. I encourage you to check it out and share it.
http://bullyinglte.wordpress.com/
This website is a forum for anyone who wants to share their bullying stories; there are many stories on this site.
Before I continue, I cannot image the inconceivable grief (and maybe anger and guilt) of the families who have lost children to bullycides. I'm very sure that such families, especially the parents and other adults in these victims' lives, are in incredible pain. This is one more reason to do all we can to prevent and end bullying, because when it ends in bullycides, the loved ones who are left behind will experience a pain that will never end. If any family members or other have lost loved ones or friends to bullycide, my heart goes out to you. To lose a child is tragic enough but to lose a child in this way is especially heartbreaking.
Laster year, I had written a couple of blog posts during the five-day "Bullying Awareness Week" that was held then. Since then, I have heard about a number of bullycide stories, on the average two or three a month, maybe more. Always and without fail, it seems to take such tragedies of live lost needlessly, to revive our concern and awareness about bullying. I never fail to grow sad, frustated and even angry, to see that such bullycides are needed to see bullying for the serious thing it it and that it is not a "rite of passage." I will keep harping on this whenever I discuss bullying. These bullycide victims, without exception, took their lives because they felt that their bullying was not being taken seriously! I know that this sickens most of us but still this bullying does not seem to be going away. How could these children feel so totally hopeless and despondent and alone, that they saw suicide as their only option? Was there no one that they could turn to? Or felt they could turn to? Is it because they are getting some unspoken messages from home, school and society that that life is meaningless and that if it becomes too difficult, that it is not worth it to "hang in there'? That they themselves are not worth it? Because we have become a society that no longer looks to God as our Hope and Help, and instead turn to numerous substitutes, we should not be surprised that children often get giving up is an option for them. Also, children's brains and self-concepts are still being formed and so if it is being pounded into them that they are worthless, damaged, inferior, defective, ugly, different, bad or stupid, it may take a lifetime for them to overcome these messages. I know this from experience! But children don't realize that, even if they may have to carry the scars of childhood experiences, that it can and is very often done; they can transition from victims to survivors as so many have done! No one wants to be a victim, but when one is able to "hang in there" and make the transition from victim to survivor, it is a matter of pride.
I remain haunted by the recent case of a young boy who ended his life, allegedly because of bullying, even though his school denied that such bullying happened. After an investigation, Law Enforcement saw "no evidence" that bullying has taken place. But I wonder. Would a boy take his life for nothing? Does his tragic case indicate that even now, bullying is not being taken seriously enough, at least by some schools, adults and parents? Whatever the actual story of this boy is, the one redeeming value of bullycide victims is that they compel us all to take bullying serious enough to act to prevent and end it. But this is a source of frustration to us who also have endured bullying, vicious bullying, that has left lifelong scars but it was seen as a "rite of passage" and as a "kids will be kids" thing or as a minor inconvenience. But are the tragic stories of bullycide victims more compelling and more important than those of us who lived through vicious bullying experiences and often stemming from differences that were stressful enough in themselves? Recently, I read a nasty Facebook comment on an anti-bullying Facebook page, that was directed by one person to another who was writing about his/her bullying experiences growing up; this person was accused of "whining about the past." I have been told, "Don't share your bullying story because then people will see you as a loser." But if children do not hear such survival stoories from others who have lived through it and have emerged as survivors, how will they see that it is possible to live through their own experiences and not only survive, but go on to become a blessing to others?
Yes, much of the bullying being done today is done to all sorts of children, not only to those who are seen as "different," "inferior," or "damaged." When I was growing up, I did not see bullying being done to my peers who were popular, talented, athletic or who "fit in" and were "cool." I experienced such bullying, however, because I was indeed seen as different. This bullying seemed even worse because the concept of the autism spectrum did not exist and so I had no explanation for why I was being singled out as "different." Adults saw me merely as a "broken" normal young person who was a "problem child," and has a "nervous" or "emotional" problem. And so I spent my school years in and out, but mostly in, special classes and special schools and a couple of residential settings. However, my peers did not need an official diagnosis to single me out for bullying because they identified me as "different." When I went to middle school, the bullying that was done to me was bad enough to get me placed in special education for the rest of my school years; since no resources existed then for bully victims, no one knew how to handle my bullying and so I had to go to special education, which back then, was more stigmatizing and disempowering than anything.
Today, much bullying is done not just becaue of intolerance but because children are jealous of each other. Therefore, children who would not have been bullied during my growing-up years, are vulnerable to bullying today, including those who are talented, popular, athletic or attractive. Yes, children are still bullied for being different, as is proved by the media coverage of those who are bullied because of homosexuality. Whatever our view of homesexuality, we should condemn bullying or abuse done to people because of sexual orientation, as we should do when bullying or abuse is done for any other difference. People who show or endorse hatred for homosexuals, are dragging God's Name and the reputation of His true followers, through the mud. They are totally missing or misunderstanding God's love and His grace as His message that ALL of us are sinners--heterosexual or homosexual. Bullying or abuse to anyone, online or in-person, is also a sin!
And we should not see bullying as just a "kid thing" or a "school problem," either. For bullying is also done in the home and in the workplace, and cyberbullying is experienced not just by children but by adults, too. In the case of adults, it is just called by a different name--harassment. But it is the same thing. The only difference between bullying and abuse is that abuse is done by those in power but bullying is done by peers; therefore, bullying is often not taken seriously. But in the case of abuse and bullying, it seems that it takes death, whether by murder or suicide, for either to be taken seriously. It seems that it takes tragedy to compel us to take any issue seriously. Rape was never taken seriously until rapists were exposed as murdering their victims and were not content with "just raping" them and letting them live! Domestic violence was also not taken seriously until we heard about parents, spouses and partners killing their victims. Maybe ours is just an age of awareness and resources are compared to when I was growing up. As much as we deplore how bullying and other crimes have entered the digital age, it is because of these same computers and other technology that we have so many more resources and so much more awareness. It is a mixed blessing.
One good thing about all of this is this: We talk about it and talk should lead to action. Below I will provide links to resources that empower us to help prevent and end bullying as well as sites for those who carry scars from bullying from the past.
http://www.stopbullying.gov/
This is the official government-sponsored website that provides a wealth of information and guidance about how to prevent and end bullying.
http://www.stompoutbullying.org/
This website is for a nonprofit that provides comprehensive services, including a hotline, for bully victims. The website is interactive and seeks to involve young people in the fight against bullying, as they are the ones who ultimately hold the key to preventing and ending bullying. As I survey this site and read about its services, I always think, I could have used this as I was growing up!
http://peerabuse.net
This is one website that provides support and a forum for those who, as adults, carry the scars from past bullying. It is for anyone who has lived through bullying. I encourage you to check it out and share it.
http://bullyinglte.wordpress.com/
This website is a forum for anyone who wants to share their bullying stories; there are many stories on this site.
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