WHEN IS IT RIGHT TO DIE? by Joni Eareckson Tada

WHEN IS IT RIGHT TO DIE? is an updated book about death and dying from a Christian perspective. It is nonfiction. Joni Eareckson Tada, the author, begins her book with a Preface and Special Thanks, which are acknowledgements for those who helped make this book possible. Tada spreads her content across three sections and ten chapters. She follows this with an Epilogue and an Appendix of the Hippocratic Oath. Then she ends with Notes citing sources used to research material for each chapter. Tada is the CEO of JONI AND FRIENDS, an organization that provides and spiritual help to those with special JONI AND FRIENDS also equips churches in helping those with disabilities. Tada has written numerous books, which include WHEN GOD WEEPS and one among several memoirs, THE GOD I LOVE.

This is not light, entertaining reading. It's about death, dying, suffering, disabilities, and illness. The author, Joni Eareckson Tada, knows by experience what she is writing about. She has been paralyzed from the neck down for decades. She has faced infertility and has never been able to bear children. Nor has she apparently been able to adopt. She and her husband, Ken, model true love and marriage. I really admire them. Recently, Joni has fought breast cancer. I have read many of her other books and heard her on radio. So her conservative but well-informed and deeply spiritual worldview, as reflected throughout this book, did not surprise me in the least. I did not realize she faced breast cancer until I read this book. Though this book is serious and profound, it is interesting and greatly encouraging and motivating. This is one book I do not want to give away or donate.

I recommend this book for anyone concerned about death, dying, disabilities illness, or depression. All pastors, counselors, and any church leader working with people should read this book and apply its lessons. There are plenty of books dealing with sanctity of life issues as they apply to the beginning of life. There are fewer books focusing on the sanctity of life as it pertains to end-of-life issues. This is a must read book and it is for all people 18 and over. A youth version of this book is needed.

I have received a complimentary copy of this book in exchange for my honest review. I was not required to give a positive review of this book.

What Do Autistic People Need From Our Society?

You surely are aware of a supposed disease that is believed by many to have emerged only in roughly these past two decades. What is this said disease being blamed on? Vaccinations. Who is leading the strong movement appealing to the media and the government? You may have guessed that it is the parents of the children who are believed to be afflicted with this disease. It is believed to be a tragedy and something that we must stand up to and defeat. Yet there are a growing number of us who question this very idea of this supposed epidemic. Why? We see these supposedly suffering children in ourselves. Are we dealing with an epidemic here?

Autism, What Is It?

If you do not identify with the autism community, you still probably are aware of some things. When you visualize the word autism, you may see in your mind's eye a person, especially a child, who cannot speak and who is marked by a series of challenging behaviors. This is accurate, as this is the form that some autism takes. But this is far from the whole picture, or the way autism looks like for many children and adults. Before the past two decades, when professions began recognizing autism as a spectrum, autism was diagnosed only in those who were severely affected, nonverbal, and exhibiting challenging behaviors. Today, we are becoming aware that autism actually is a broad spectrum, from those nonverbal individuals who need assistance with basic self-care, to highly successful and accomplished people with Asperger's Syndrome.

Autism As a Disease or A Difference?

In the autism community, there are factions that are often strongly opposed to each other. These consist of parents of children or relatives diagnosed with autism over these past two decades or those with relatives who were diagnosed with autism before then. Most of these people view autism as a tragic, dreadful disease that needs to be eliminated and "cured." That model is behind controversial nonprofits like Autism Speaks and Generation Rescue, which many parents and relatives of autistic children strongly support. There are a growing number of those, mostly adults, who are self-diagnosed with autism spectrum disorders (ASDs), or have been diagnosed after leaving their teens. We recognize autism not as a "tragic disease in need of a cure," but as a neurological disorder that causes differences in how a person thinks and relates to the world, to others, and to himself. Professionals or volunteers who work with those with ASDs may fall on either the "cure" or "celebrate as a difference" side of the controversy. Why can't both camps or factions seem to find any common ground, but continue to war with one another? I find the fighting and factions within the autism community very unfortunate, as this just increases the stigma of autism and keeps us from working together to get what all of us really want for ourselves and our loved ones with ASDs.

My Experience

My own experience of becoming autism aware did not begin until my daughter was diagnosed before she turned three years old. Hannah was diagnosed with Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS). The diagnosing pediatric neurologist told us, "PDD-NOS is actually a variant of autism, which we now know occurs along a broad spectrum." Since I was aware of the hugely successful Temple Grandin, herself diagnosed with autism as a child and who miraculously "emerged from it," we held onto hope that Hannah would, too. And our daughter, thanks to her proper diagnosis and early intervention, was able to experience modification of her autistic traits. Thanks to God and to the fact that she has no other conditions along with autism, Hannah has always been mainstreamed, with supports. Today, while she still struggles with social problems, she makes good grades in school, exhibits no challenging behaviors, and seems happy overall. Myself, I identified myself as having a possible ASD for years, courtesy of all my many past and present differences that had never been explained. I spent hours and hours seeking qualified, affordable professionals in my area who could screen me as an adult for an ASD. The few professions that could did not accept my insurance, so I could not go with them. Though I was not open to it at first, I made an appointment at an autism center two hours each way and back and forth, from where I live. The only reason for that was because they had one qualified professional at this center which works with low-income families who are unable to pay. After waiting months for the appointment and more months for the results, I finally was able to see my self-diagnosed ASD become officially confirmed. Relief!

How Does Autism Affect Me?

If you do not identify with any part of the autism community, you may wonder how autism affects you. First of all, you probably know someone who has diagnosed or undiagnosed autism. You may not know this because they may not have disclosed their ASD or their relative's ASD. You may have friends or acquaintances with ASDs. ASD people with unmet needs because of lack of affordable autism services, often either withdrawn from society and fail to contribute to it, or may act out and commit crimes that land them in prison. These are the individuals who fall in the over 70 percent of all ASD adults who lack employment, and who use government assistance programs like Supplemental Security Income or Social Security Disability. These are the individuals who may act out by committing sex crimes or violent crimes. Much more often, ASD people fall victim to those crimes because of their inability to read social signals. When the needs of ASD persons go unmet because they are not served, we lose out on the contributions they can be making and the programs they use cost taxpayers millions. The effects of their committing or falling victim to crime costs us in terms of all the resources that must go to processing them through the justice system, especially through jury trials. Above all, it costs them and their families.

What Can We Do?

We all can do something to help the situation with autistic people, as for people with other disabilities. That is true whatever our life circumstances. First of all, we all can and should educate ourselves about autism and other related disabilities. Below, I provide links to a couple of resources and you can do a Google search to find many others. You can also show your support by signing my autism petition, which is run both on Change.org and on SignOn.org. Please take time to sign both; it take little time to make a big difference. If you know any people with ASDs or other disabilities, welcome them, accept them and befriend them. What is it that autistic people and others with other disabilities need from the rest of us?

Please Sign This Autism Petition at Change.org.

Please Sign This Autism Petition at SignOn.org.

National Autistic Society--United States

National Autistic Society--United Kingdom

Autism, Success and Equal Opportunites

A new and exciting development is taking place in the autism community that has the potential to influence society at large by its very nature. I'm talking about one of its Members competing to be crowned the newest Miss America. The young lady who is up for this honor is named Alexis Wineman. According to the information found on her Facebook fan page, her platform is titled thus, "Normal is Just a Dryer Setting--Living With Autism." When she was in the 7th grade, she received the diagnosis of Pervasive Development Disorder--Not Otherwise Specified." Today, I saw the photo of Alexis in her competition gown. Of course, she is beautiful in the picture. She has become the new pride and inpiration of the autism community and the new poster girl for "making good" and for autism awareness. Alexis is the first Miss America contestant who has been diagnosed with an autism spectrum disorder (ASD) and is competing as Miss Montana. Today, I saw posts about Alexis that several people, including autism nonprofits, posted. Of course, many left comments cheering Alexis on, one saying, "Team Alexis!" and "Go Alexis!" and much more. But I wonder, even if Alexis wins the crown, what will this do for the autism community? She speaks of autism awareness on her fan page but do we need more autism awareness? Do we need Alexis's success to convince an uninformed society to welcome people with autism and other disabilities?

Please do not get me wrong. If Alexis wins, not only will her win bring her, her family and her friends much pride, happiness and validation, but her win would also inspire many in the autism community by showing us all what people with autism or any disability can accomplish. This is most certainly true! There is not a doubt that Alexis has worked very hard, and continues to do so, to make all this possible. She has no doubt, over the years to present, put in endless hours of discipline, practice and pushing herself outside of her comfort zone, to qualify herself to even be eligible to compete for the crown of Miss America. Put autism in the mix and you can see that Alexis has overcome the obstacles of her differences, making her accomplishments all that more inspirational. Whether she wins or not, Alexis, like Temple Grandin, PhD, and other successful people with diagnosed autism, shows all of us, autistic or not, what is possible. But what can never be overlooked in the case of Alexis and in the cases of other successful autistic people, and successful people with disabilities in general, is that each one of them have enjoyed the support of others who believed in them, cheered them on, challenged them out of their comfort zones, and made personal sacrices of time and even money, to see these individuals succeed. Plus, each one of them benefited from proper diagnoses and interventions. Maybe not at first but eventually.

Believe it or not, when I express my concerns these have nothing to do with Alexis or her success, or the success of any other person with autism or other disabilities. My main concern is that there are those who find it a struggle to feel unmixed happiness for Alexis and her success. This is not because anyone begrudges Alexis (or anyone else) well-deserved success. It is for other reasons having to do with personal experience that is unshared by Alexis or others with autism or other disabilities who have overcome obstacles and "made it to the top." I'm thinking about the families of those with more severe autism or other disabilities whose differences so affect theit most basic functions, that their loved ones are very unlikely to ever be able to even aspire to Alexis's accomplishments. I'm talking about those who are nonverbal or have other significant differences for which they will need lifetime care for the rest of their lives or at least substantial supports. Such individuals will never be able to achieve what our culture defines as independence or success. From time to time, I have seen people in my network, whose autistic loved ones are nonverbal and lack basic self-care skills that limit their functioning, vent anger and even hostility toward those autistic people and families of those with "mild autism." These families no doubt see stories and autistic people like Alexis but know that her success and her story is not possible for their loved ones to ever know. A person in my network, whose autistic child deals with severe problems and a low function, vented one day with anger and hostility: "I see all these posts about kids with Asperger's or 'high-functioning autism' and all these success stories and how everyone is inspired by them. Well, what about MY child who cannot even talk and take care of herself or know what society considers independence or success? My child's autism! Who is inspired by THIS form of autism?! Do you parents who are blessed with your "inspiring" kids with mild autism have a clue as to what parents like me suffer? You do not HAVE A CLUE! Praying for Asperger's."

I'm also thinking of others in the autism community who are members of "the lost generation" who experienced misunderstanding, failure, and even abuse or harmful interventions before the autism spectrum disorders (ASDs) become implemented as a diagnostic tool in the year 2000 or a little earlier. Many experience unemployment, mental health issues, abuse, even homelessness or imprisonment because their ASDs were never discovered then and may remain undiscovered. More fortunate ones found a way to work around their differences and carved out niches for themselves, with the support and understanding of others even with no diagnosis. Myself, I admit that when I think about Alexis or any successful person with autism or other disabilities, I struggle with feeling unmixed happiness for them. Thinking about them, reading their stories and seeing the praise that others lavish on them, triggers in me feelings of sadness that the support and correct diagnoses and interventions that these people have had, were not present for many of us, including me. Reading about them and their successes, also triggers in me feelings of regret for missed opportunities that I no doubt had because I never knew what was going on with me and believed my bullies (peers and adults) who declated that I would amount to nothing. Therefore, while I did not "lose my way" by adopting a self-destructive lifestyle, I did not "find my way" by finding any niche of success. I also feel a measure of loss knowng that those years can never be regained. I know I am not alone. I have seen a few posts even today, by people lamenting the harm that wrong diagnoses and inappropriate interventions have done to them. Beholding Alexis's story is not exactly validating to people who cannot relate to the support and proper help that she had, though she had to wait till 7th grade to get a proper diagnosis.

Then there are the many families and autistic individuals who are low-income or minority and they lack access to the services and opportunties that Alexis and every other autistic and otherwise "different" person has known. All the preparation that Alexis has needed in order to simply qualify to compete to be crowned Miss America, are simply out of reach for many families. While they desire success for their children, they do not have the resources and maybe not the education, to expose their children to opportunties to build on their strengths and master their weaknesses, much less to develop their gifts and talents. Not because of lack of ability or talent but because of lack of opportunity or resources, so many of these children with autism or other disabilities many never be able to aspire to the kind of success of Alexis or others like her. Such families may struggle with feeling unmixed happiness at her success. Families of color may find it hard to ignore the simple fact that Alexis is white, with all that this represents. Racism is far from dead in the US, despite legislation and the fact that the current US President is Black. The abuse that so many heap on this President signifies this, in my opinion. I will not delve any more into the race issue here, only to point out that many in the autism community may struggle with feeling unmixed happiness for Alexis's well-deserved success. The point is that for many families of those with ASDs or other differences, survival is the goal that they are forced to be content with.

This is where my petition's success and the response of Congress and the President to it, can help so many autistic people and level the playing field. Comprehensive services for all autistic people means resources that can empower many to build on their strengths, master their weaknesses and be in the position to develop their talents and gifts. This can make many more stories like Alexis's possible. I have seen some in the autism community cheer that Alexis will bring more awareness to autism. This is needed for many uninformed people, to a point. But all the awareness in the world is not worth much without services and resources for those who need this awareness! The success of Alexis, as inspirational and well-deserved as it is, cannot provide other autistic people with actual opprtunities to similarly overcome weaknesses, build on strengths and develop gifts and talents. Only much-needed are currently often-not-existing services can truly help many autistic people. So by all means support Alexis, check out her webpage that I'm about to provide and cheer her on. But while you do so, please do not forget to support my Change. org petition so that many other autistic people can "reach for the stars" like Alexis.

http://www.missmontana.com
You can learn more about Alexis here.

http://tiny.cc/mrsahw
You can sign my petition also, right here.

Advocates and Self--Advocates

I'm sure that all of us are familiar with the term "advocate," which many people in my social network use as titles for themselves and which appears on their social networking profiles. A number even include this title in their screennames. But many of you reading this may not be as familiar with the term and title of "self-advocate." What is that? I have been aware of this term and title for many years and its is usually used in the general disability community. This term was coined because, by its very nature, have a disability (s) means that one will find oneself in situations where one will need to advocate for one's needs and seek accommodations and understanding for them in order to live in society and with one's family. So, an advocate is one who speaks on behalf of others who do not have a voice to speak up for themselves, and a self-advocate is one who has special needs or disabilities that may need accommodation or understanding and who needs to speak up in his or her own behalf, to make this happen. Self-advocacy as a concept or title did not exist decades ago, when many people with disabilities were insitutionalized or where many with special needs were segregated in special education classes and then sent to live at home with their families, or worse. Out of sight, out of mind. But the concept of self-advocacy has changed that.

Currently, many in the autism community are stirred up because of scheduled hearings this upcoming Thursday that are to focus on autism. I learned about thse pending hearings last Thursday, on Thanksgiving Day when I was scrolling on Facebook. Since then, I found the webpage for how people can find their US Representatives and contact them. Initially, no autistic persons were invited and there was much uproar over this. The disability community has a slogan, "Nothing About Us Without Us." This means that no one should be making any decisions for a self-advocate that does not take into consideration what the person thinks or wants. I have been spending much time sharing the link to the House of Representatives webpage that links to their websites and their information, including their contact information. I have been sharing with people the link to my Change.org petition and asking people to share with their Representatives this petition and its mission, to obtain funds for underserved low-income children and all adults with suspected or diagnosed Autism Spectrum Disorders (ASDs). I have granted that research has it role, in learning better ways to diagnose autism than we have at present, and to improve the quality of services. But I have been stressing that people ask their Representatives to examine my petition and its mission and to consider mentioning my petition and its mission at the hearing.

I do have fear about the outcome of these pending autism hearings this Thursday. I was delighted to learn from a Facebook post from a ASD self-advocacy group, that the CEO of that nonprofit in question, had been invited to the hearing. Also, the President of another ASD self-advocacy nonprofit also has been invited to the pending Thursday autism hearings. Since then, I have been scrambling to get the attention of the "big voices" in the autism community to examine my petition and to consider mentioning it at the hearings this upcoming Thursday. This unfortunately has not happened and my petition is unlikely to be mentioned at all by the "big voices" in the autism community who have been invited to the pending autism hearing. I know that other nonprofits, which favor research and "finding cures" for autism, are also being invited and have an equal right to their say at these pending hearings. My fear is that whatever happens this upcoming Thursday, at 2:00 PM, that the funds that are written in my petition letter may be allocated to things other than the badly needed services for those children of low-income families, and all adults with ASDs, that are not available now to these underserved persons. I fear that my petition's mission and goal may be hindered and that too many funds will go to research.

As far as my petition goes, yesterday several people in the autism community have taken it upon themselves to try to convince me what is wrong with my petition. One person has told me that it is "poorly written." When I challenged him to tell me what he meant by ths statement, he declared that my petition calls for people with "suspected ASDs" to have access to services and that this provision would open wide the door to many to "abuse the system." In vain, I sought to share with this person how the very process of seeking an ASD diagnosis is tedious, requiring much paperwork and "jumping through hoops" that should discourage most persons who would "abuse the system." I apparently wasted my time as others joined this person in ranting about scammers "abusing the system" and that "petitions are useless." I agreed that there is potential for abuse in making services available to those awaiting a diagnosis of ASD, just as there is with any good thing. I declared: "Every person with a diagnosed ASD at one time had a suspected ASD." All to no avail. At this time, I an unable to have any illusions that most peope in thi community appreciate, much less enthusiastically support, my efforts to try to obtain funds for the many underserved low-income children and all adults, with suspected or diagnosed ASDs. After this Thursday, I may be forced to re-think my entire petition and may need to make more painful revisions and do more research. As a Christian, I realize that whatever happens is in God's hands and that I have no control over the response of others whom I have been trying to appeal to.

This brings me to my point of why people with "suspected ASDs" even though there is a chance of abuse of such a provision, should be covered in services for those with ASDs. For if one has challenges in relating to other people and in thinking as they do but has no diagnosis to "label" these challenges, how can he or she speak up effectively? How can one with a condition that is there but is not confirmed with an official diagnosis, have the confidence to tell people what he or she needs if there is no system by which to identify it? In the free world, we live in cultures where documentation is respected and which bolsters credibility. And as I pointed out to the people in the autism group who were trying to discredit my petition, all of those who have an officially disagnosed ASD, at one point had a "suspected ASD." This obviously holds true of every person, whatever his or her age. So withholding services from those who "just have suspected ASDs" does not make sense. If those who are lucky enough to have a correct diagnosis were treated in this way when their conditions were "just suspected," they would never have been diagnosed. This has always been my problem and challenge. I cannot tell you of the countless times and situations where a correct diagnosis would have probably gotten me understanding and opportunties and accommodations! This holds true not only in my childhood but also in my adulthood, and in my family and my community. But so far, when questions have been asked of my family about me or to me, there was no good explanation for my challenges. "Oh that is just the way she is," has always been a typical "apology" for me. At times, I cannot help but feel a pang of jealousy for those in the autism community who have the validation and understanding of an official diagnosis.

I would like to make an appeal to those of you who are reading this. I realize that a number of you may already be familiar with what I am about to ask and forgive me for what will be to you a repeat appeal. I would like my readers who live in the US to contact your Representatives, if at all able and this is very urgent as the autism hearings are this upcoming Thursday at 2:00 PM. I appeal to you to share with your Representative the importance of these hearings and to consider attending. I'm asking you to share with your Representative my petition with the link http://tiny.cc/mrsahw, and ask your Representative to examine this petition and to consider mentioning the petition and its mission at the hearing. Your letter need not be long and should be respectful, concise and to the point. You can find your Representative here: http://www.house.gov/representatives/find. You letter can be composed much like this sample letter:

Dear-----------------------------,

I am a concerned citizen and (you can fill in about your situation in relation to autism or your desire to show your support). I have learned about the pending autism hearings this Thursday at 2:00 PM. I understand that among the topics to be discussed, what will be covered is where autism funds should be allocated. Research has its role and some funds should go for it. But my primary concern is that most funds be allocated to services for underserved persons. These include those with suspected or diagnosed ASDs who come from low income families who cannot pay for services, or who are adults. There is a Change.org petition at http://tiny.cc/mrsahw and I invite you to examine it and its mission and goal. I ask you that, if you are able to, to attend the autism House hearings this Thursday, and to mention this Change.org petition, its mission and its goal at the hearings. If you are unable to attend the hearings, please examine the petition and send it to other House Members who may be able to attend the hearings. Your service and support mean very much to me and to all persons with ASDs.

Thank you very much for your service to our country
Most Respectfully,
(Your Name)


You can search for your Representative by zip code. Like me, you may get more than one Representative and you will be asked to either search by using a map of your area or by supplying the last four digits of your zip code. I did not have the option of emailing my Representative but my letter to him had to be faxed. In that case, I do not know what to tell you. But most of you should be able to find the option to email your Representatives. If you truly do not have time or do not feel that you are able to compose a concise, to-the-point letter to your Representative, I hope that you will share this with others or show your support in other ways. This is a very urgent matter which can affect the futures of many people, including future generations.

October Is Anti-Bullying Awareness Month

Often I find it ironic that something that, decades ago, was considered a "rite of passage" and "just part of being a kid" and hence to be tolerated, is now a huge phenomenon and that there are many dollars, time, and resources being poured into raising awareness for it. Many nonprofits have been set up to prevent and end it. Websites, groups and pages are continually set up for it. And now an entire month is being set aside to focus on it. It was a big part of my life the determined, for the worse, what kind of education I would be fast-tracked into and made me feel robeed of a childhood and an education. I'm talking about peer abuse or what is most commonly known as bullying.

Yes, I do not think that bullying would ever come to have been taken so seriously and received so much awareness without the coming of cyberspace and cyberbullying and the high-profile cases of teens being driven to suicide because of bullying they experienced, often online. And the bullying among children is now taking place at younger and younger ages, is now being done to any children, and is being done through texting, emails, social networks, and other digital venues. Awareness does not seem, in my opinion, to be doing much to prevent or end bullying. We still hear the sad stories of bullycides and of bully survivors and their stories abound with tales of adults not taking their bullying seriously until, often, it was too late. Every time I read about or hear about one more story of another teen or even a child, taking their lives because they could not endure one more minute of being bullied, we get deeply concerned and outraged and we ought. We scream about preventing and ending the bullying. "Shame on these adults," we declare, "who do not take bullying seriously! It is THEIR FAULT that these bullycides happen! Shame, shame, shame!" And yet, this bullying does not stop or why or we still calling for more awareness events? And why does it always, without fail, take death and tragedy to get us to care enough about any human problem enough to do something about it?

Here is my bullying experience and even though the school bullying took place decades ago, I can assure you that since it is another word for peer abuse, this bullying left me with many of the same emotional scars that any other kind of abuse would leave. Abuse is abuse, no matter who does the abusing. I was a magnet for my bullies because of my differences. Adults tended to verbally or emotionally abuse me, no doubt in frustration, by making remarks such as: "You just don't want to learn," "You do it on purpose," "You will not make it in life," "You are mentally and physically lazy," "You do not have real problems; you are plain spoiled," and more. A few would lock me in closets to "teach me a lesson." My peers? They took the far more blunt approach. Many noted that in me they had a juicy target. Yes, I'm forever grateful that, along with so many in my generation and even younger, we had missed the digital age and so we did not have to deal with cyberbullying. Yet, and for the very same reason, the lack of awareness of bullying and what causes children to bully and to become the targets of bullying, added to the stress and trauma not only of the bullying itself but how adults handled it and the outcome of that intervention. Especially during my middle school years, my peers viciously bullied me. They called me names like "Retard," "Ugly," "Four-Eyes," "Stupid," Slow," and names not fit to be printed here. I spent one school year enduring this bullying on a daily basis. My peers beat me up, put cigarette lights to my hair, tripped me, grabbed my books and lunch money, and more. This all got so vicious that the educators at the school in question, in an age where there was no awareness of bullying, autism spectrum disorders, learning differences and others factors to cause children to be extra vulnerable, did not know what to do. Their solution? In consulation with my parents, they decided to place me in special classes, which I had already spent much of my childhood. Message to me? You are the problem, you need to be segregated with other problems and there is something SERIOUSLY wrong with you! Twice bullied!

And bullying is not confined, by any means, to schools or to the young. Bullying happens to adults and is done by adults. There is workplace abuse and bullying and a prime example of that is when employers scream at employees and even fire them for inappropriate reasons or the sexual harassment that can take place at the hands of co-workers or employers. I experienced something of this when, many years ago, I worked in a retail store for months and was doing okay there, until a new employer took over. I was certain that he did not like me and this was confirmed when, one day, he cornered me and declared, "Your services are no longer needed." He did give me his phone number so that I could use him as a future reference in a job search, which puzzled me. However, I learned later that most of my co-workers had not been "laid off" as I had and a few others had been. Those of us who had been "laid off" had "special needs" or issues and so I believe that this was discrimination. And cyberbullying happens to people of all ages who use social networks. About two years ago, I had applied to volunteer for an online nonprofit and was almost immediately accepted. I set up an official page for them and, within hours, the page was hacked with questionable material going out to my newly-added contacts in my name, material that I would never have sent anyone. The contacts linked with this nonprofit tried to do "damage control" for me. I made the bad choice of letting a family member get involved concerning how to fix the computer. However, the hacking continued and my rapport with those linked with the nonprofit began to deteriorate as they thought that I should find a way to get my computer fixed faster; then, they decided that I was not qualified to volunteer for them. I was told, "I spoke with the CEO and we have agreed that you will not volunteer for us because we need people who will help our nonprofit, not hinder it." The said family member, seeing that I was shocked and devastated by the nonprofit's (to me) abrupt decision, intervened and expressed anger at the volunteer co-ordinator. After that, a contact with the nonprofit stated that everyone with the nonprofit was ordered to remove me from their official Facebook profiles for the nonprofit. That happened as I saw that my numbers were going down more and more and I also saw that a number of these contacts had blocked me totally. No one had to tell me that some bad-mouthing of me had to have been going on for this all to take place!! On the eve of my birthday two years ago, I had reported an online sex offender who was brought to our attention and, minutes later, i received a friend request from him which I just ignored. That was not wise; I should have blocked him and marked the request as spam. On the morning of my birthday, I logged into facebook and posted my causes on group pages. Then I visited my homepage and was dismayed and anxious when I saw  this warning: "You are being asked to remove pornographic or other materials that are offensive to other users or else your account may be disabled." And I have seen numerous posts by adults in my networks about things that had been done to them online, hacking, impersonation, gossip, hateful comments and more, and have seen numerous hateful posts directed especially at politicians, not to mention hateful pages, websites and causes. Online bullying! It knows no age limit!

It is because of my awareness of bullying and efforts to try to avoid the appearance of bullying, including online bullying, that I get hurt when, especially in connection with my petition campaign and less often, seeking followers for this blogspot, I have been accused of bullying or peer abuse when I have expressed hurt or frustration about lack of support. Related to this, I have heard of accusations of online bullying where it seemed to me that the said individuals were venting frustration or expressing opinions. Bullying or peer abuse, like any form of abuse, actually occurs on a very broad spectrum and often wind up being very gray areas. Take the matter of spanking or any physical punishment, like putting soap in a child's mouth. Many advocates and nonprofits consider these to be a form of child abuse now, when these were very normal and even commended when I was growing up. Sexual harassment and lewd comments, made especially to a child or another vulnerable person, are considered sexual abuse today. Things like this were dismissed almost as "normal" and a "male thing" when I was growing up. I wonder if abuse, especially peer abuse, is so hard to address because often abuse is hard to pin down, define and, especially, to prove.

Then there is the issue of not merely bullying or abuse itself but of the bystander issue and what we do if we witness abuse, including peer abuse and even if, if just to fit in, we may contribute to bullying or abuse. Now, unless I'm missing something, I'm sure that many, even most of you reading this will hotly deny that you have ever been guilty of these things and have ALWAYS stood up to bullies and abusers. And you would NEVER, even to "fit in," ever have contributed to bullying! Not even as a child growing up! But I think that those of us who are more honest will admit that, being human, that there have been times, especially in childhood, that we have been bystanders, watching others being bullied but feeling powerless to stop it and so we did nothing even though we may well have felt sorry for the victim. So much bullying/bystander behavior happens because of insecurity and wanting to "fit in." I must make confessions in this regard concerning my school years. In a Girl Scout troop meeting for a church-based school (BEFORE my vicious public school bullying experience), I found myself in the VERY unusual position of, in the name of "fitting in" and being "cool," adding to the bullying of the girls who had been and who continued to bully me after the said incident. I wrote a poem disparaging the girl in question and, though it ended up in the trash and I don't think she had to see it, I still feel guilt and shame to this very day for my role in her bullying experience. All to "fit in"! And it did not keep me from further bullying by thse girls! An experience as a bystander happened when I was at a camp, possibly even BEFORE this time frame. All of us were in a pavilion doing artwork and then we ate lunch. As I recall it, a camp counselor was yelling at one of the girls and a number of my peers laughed at her. I felt sympathy for this girl but I must confess that I did not speak up in her behalf. After all, I did not even know the story but still, could this girl not have used someone coming to her defense? I still feel guilt about this, even today.

It is never ever pleasant or comfortable to even think that one's beloved, precious child can be a bully. It is bad enough to face the reality that your child may be bullied. But both must be faced as bullying is an epidemic and, at the end of this blog, I will provide the link to the Stomp Out Bullying website. This nonprofit exists to prevent and end peer abuse and the focus is exclusively children and teenagers, 17 and under. All of us who are parents and who have Internet access, would do well to explore this website, educate ourselves about bullying and cyberbullying and about how we can prevent and end it. This all applies to me now as a parent, for, as I write this, I have a daughter who is in middle school and who is vulnerable because she is on the autism spectrum. It is often said that abuse and bullying are best prevented and ended at home, by both modeling and teaching empathy, kindness and compassion. And as for those many of us who have survived or are being bullied or abused right now, there are forums and resources. I will privide a link to a site where bully survivors of any page can share stories of all types of bullying and abuse, find support and inspire others. For one thing about surviving abuse of any kind is that we can share our experiences and help, encourage and inspire others. This is often overlooked as a form of advocacy. But none of our life experiences ever are wasted if recycled to help others.

http://stompoutbullying.com/
This is the website for parents, educators, children and teenagers aged 17 and under. The site provides comprehensive information and many services for children and teenagers, to prevent and end all forms of bullying. They also link to a sister site with the Love Our Children USA and this sister site and nonprofit focuses on other forms of crime and violence against children. Stomp Out Bullying has a hotline and a live chat feature, though limited, where bullying victims can contact this nonprofit. However, when a victim is suicidal, they are directed to a suicide hotline.

http://bullyinglte.wordpress.com/category/personal-bullying
This is a website and forum for people of any age, from the youngest to adults, can share stories of surviving all forms of bullying, find support and support others.

http://www.rachelschallenge.org/
This site was set up by the father of Rachel Scott, the first shooting victim in the Columbine High School shooting in Littleton, Colorado. During the final years of her short life, Rachel expressed her deep Christian faith through living a life full of acts of kindness, compassion and caring, in school and out of it. Her father began this nonpartisan, nonreligious nonprofit, along with family members and others connected with Columbine. They travel all over the US and share Rachel's story in any setting where they are invited, passionately seeking to prevent and end peer abuse by spreading a message of living lives of love, empathy, kindness and compassion.

http://peerabuse.net
This is the one and only website that is devoted to adult survivors of peer abuse.

What Is Autism?

       You may have heard about (or even know) of people such as these:
       The stereotyped person who cannot talk, but maybe can communicate through sign laguage or something known as facilitated communication and possesses savant skills with numbers;
        A child who learns to speak normally at the typical age but who, for reasons unknown, loses most or all speech;
        An analytical person, gifted in math and decoding words, who can't make sense of metaphors or higher-order concepts;
        A person who is unable to tolerate loud sounds, bright, flashing or flickering lights, light touch, but who is brilliant at reading and is fascinated with horses and is eager to share that knowledge;
        A child who teaches himself to read at age three and yet, as he grows, remains unable to "get" people and is totally lost in social situations;
        A person who insists on daily adhering to the same routine and eating the same foods, who withdraws from people because of the inability to "get" them and yet who is at home with ideas and concepts;
        These people and many more, are illustrations of autism. And every person's autism is unique; no autistic person resembles another. Autism is, put simply, the inability of the brain to make correct connections because of faulty wiring. This results in impaired social understanding and communication and often, challanges with language and daily functioning, sensory processing issuesand how one makes sense of the world. And autism occurs along a spectrum, from the brilliant person with Asperger's Syndrome without social skills, all the way to a profoundly affected person who is unable to communicate in any meaningful way or care for self or achieve any independence. On this blog, I will be using the term "autistic" rather than person with autism," because this condition is profoundly woven into one's identity; there is no way you can separate an autistic person from his autism the way you can separate cancer from a person who lives with it.

       Why is this subject so important to me? I speak from personal experience, for I believe that I grew up with undiagnosed autism. Many years ago (need I say how long?), I was conceived and my mother, then, was 16 years old. When my her boyfriend, my dad, learned about her pregnancy with me, he was livid. Thinking he was going to "eliminate" this "problem," he kicked mom, hard, in the stomach. As a possible result of this and her traumatic labor and delivery nine months later, I was born with an assotment of problems that set me apart from the beginning but that the "experts" could not make any sense of, because the autism spectrum diagnosis was did not exist back in the 1960s and 1970s when I was growing up. I was diagnosed as obssessive-compulsive, emotionally disturbed, socially and emotionally immature, withdrawn, behaviorally-disordered, mild cerebral palsy, epileptic, schizoid personality, learning-diabled, and more.
       As a child, I would be told, "You are just plain spoiled; you just don't want to try or do the work," "You will not amount to anything," "We don't know what to do with you," and more. I remember constantly receiving scoldings and spankings from the adults in my life. My peers often bullied me; they took note of how differently I walked, behaved, and though and they reacted to this by calling me names like retard, cripple, four-eyes, stupid, ugly, and things not fit to be put in print. And yes, the bullying did get physical, especially during my middle-school years. I don't recall that my bullies were ever were disciplined or suspended from school. The following year, I ended up in special classes; I felt that the school was trying to "get rid" of me. The fact is that they had no way of knowing how to help students with undiagnosed autism spectrum disorders, as the only time autism was diagnosed was when it occured in its severe, classic form.
       As it was, educators and my family did not know what to do with me. So I spent much of my childhood and youth in and out of special classes for my peers who behaved and learned differently, and a few times, I spent time in residential placement. Always, I remember what one of my teachers of one special class said. She said one day, "I taught a class of boys and each one of them ended up in jail. I felt like a failure." To this day, I wonder how many people in jail, in prison, and on the streets, have undiagnosed autism and who never received the proper interventions that could have empowered them to learn, conform to society, become independent and achieve productive lives full of friendship, purpose, and personal fulfillment.
       As an adult, I lived with pervasive feelings of worthlessness, frustration, confusion, anxiety, a shame-based identity, and I did my utmost to "pass as normal" and stay "in the closet," concealing my past and my challenges. I know I was not entirely successful, judging from feedback I would get and questioning glances and remarks that got back to me, where people would wonder "What is up with her?" Then, after years, I gave birth to my beautiful, precious daughter, who exhibited the same delayed speech and distance in human relationships that I showed at her age. One day, before she reached age three, she was oficially diagnosed with Pervasive Development Disorder--Not Otherwise Specified,"(PDD--NOS), a form of high-functioning autism (HFA). The doctor told us "This ia a variant of autism, which we now know occurs on a spectrum."
        Wow. Now we knew what was up with our daughter and knew how we could help her. Soon I hear that relatives were suggesting (but not to me) that I may have been autistic all along. Could this provide answers to my lifetime of challenges that had the "experts stumped about me?
        To this day, I have not found anyone in my area who evaluates adults over 25 for autism. I know I may never be able to get that formal diagnosis that could provide the closure I crave for my life. But I am forever thankful that my daughter and a whole generation, and future generations, can be spared much of the pain and hardship and anguish so many of us had had to suffer because no one knew any better. And maybe, this can help alleviate other social ills surrounding undiagnosed conditions.
        By no means do my daughter nor I represent all autistic people and this one blog can't possibly do justice to this most complext topic. So I will provide a few links to sources where you can educate yourself about autism.

http://autism.about.com/

http://www.autismandempathy.com/ a blog

http://grasp.org/Asperger's/Autism organization