How Long?

     Many single people ask this as they wait for that desired someone special to share their lives with, often seeing no one in sight who seems to be "right" for them. Meanwhile, the passage of time continues.
     Many would-be adoptive parents ask this as they put in their applications to adoption agencies and then are often made to wait for months, even years, for an opportunity to adopt a baby or child who is a "good match" for their particular home lives.
     Many people, unable to be employed for some reason or another, ask this as they go through the long process of being approved for Disability benefits, even having to use attorneys to help them get the benefits need for them to just survive.
     Many families with missing or murdered loved ones ask this as they wait for months, often years or even decades, until their loved one comes home, they find out what has happened to that loved one, or they see justice done for that loved one.
     Many people waiting for organ transplants ask this as they wait for often long periods of time, until they find someone able or willing to donate the organ they need that will be the match for them, just so they can live.
     Many millions of people of faith, worldwide, ask this as they suffer through the pain and traumas of severe religious persecution, with seemingly no end in sight. Often, no options for them exist except to stop boldly practicing and sharing their faith, which most refuse to do.
     Many families with nonverbal children, because of severe autism or other related disabilies, ask this as they wait to hear their children say their first word and reach other milestones where everyone else takes for granted.
     Many patients with long, lingering illness ask this as they suffer through pain and agony, often in spite of medical treatment, wondering when their suffering will ever end.
     Many infertile couples ask it as they seek the taken-for-granted but (for them) elusive state called pregnancy, or undergo (if blessed with $$$ or good insurance) treatments designed to help them "make a baby."
     Many couples and individuals, unable to afford decent housing unassisted, ask this as they go on often long waiting lists, for months, years or even decades, waiting until word of a housing opportunity for them.
     Many people ask this as they wait, often for months, to see in-demand specialists who are essential to taking care of their particular needs.
     Many families and individuals dealing with special needs, especially those which are stigmatized and misunderstood, ask this as they wait for society to educate themselves, to understand that God has made all people equally precious, and to be more accepting and welcoming.
     And I continue to ask this as I keep being made to wait and wait until I can contact a qualified, affordable person who can give me a professional opinion as to a past (and often present) that can lay to rest many unanswered questions.
     It is called waiting and I'm sure that there are others who are waiting for many other things to happen that I have and will not be mentioning here. Waiting is not something that any one of us enjoys doing. I know that I dislike waiting, often outright hate it, depending on what I'm being made to wait for. Waiting means that we don't receive what we want on our own timetables. It means putting off, benefiting, and getting to enjoy something that we often need or yearn for, often intensely. But waiting is really a "survival virtue." We are always waiting, waiting, and waiting.
     All of life is waiting or a "waiting game" as it has been called. Unless we live in some cave somewhere, we are often being made to wait in lines, wherever we go or what we do. We wait for traffic, we wait in lines in stores, we wait for appointments with our doctors or others. And this kind of waiting continues to be required of us even in this day of fast food, microwave ovens, text messaging, instant messaging and social networking. Our culture des not encourage patience. Another word for patience is "longsuffering," according to the King James Version of the Scriptures. And what is the only way to be patient or "longsuffering'? It is simply this, to suffer long, to undergo the often agonizing process that we call waiting!
     Many of us who are not affluent or wealthy, and who live from paycheck to paycheck or who live on fixed incomes, know very well the frustration and sometimes the agony of having to wait to make much-yearned-for, even needed purchases, or to take advantage of much-desired opportunties until we get paid again. We are not able to spend money when we want to and often when it is convenient or best. For poor people, waiting is a way of life.
     In my opinion, summer is an exercise in patience if you don't have the resources to spend on traveling for recreation, camping, swimming, or other summer activities. Summer is an exercise in patience of you are a parent with active children who are home from school for the summer, especially if you cannot send them to camp or afford other summer opportunities for them. And summer is an exercise in patience if people whom you have been counting on for some reason, limit their summer availability because they are able to and "take off" for the summer. "I'm ready for Fall to be here already!" a couple of people in my family have recently said. "I can't wait for summer to be over!" one had posted on Facebook. In my comment, I had heartily agreed, adding, "It gets tiring when people take off for the summer and become unavailable." And then there are children from many poor families who wait for the school year to begin so so they will, again, have access to sometimes the only nourishing food they eat, through their school's free lunch programs. And summer is an exercise in patience for many charities and congregations as they wait for Fall to arrive, when people typically give more and are less likely to pour money into vacations and other summer activities.
     It is often said that the most common answer that God gives to prayer is not "Yes" or "No" but "Wait." Circumastaces reveal how true this is! I'm sure that almost all of us who pray can tell stories about how it has taken many years, even decades, before we have seen answers to many of our prayers. This certainly holds true for long-term, complex needs and desires. And even in these days of communication and technology, we still have to have patience with these devises when they malfunction and are "down" for some reason or other. And on social networks, we still have to have patience with people who, even online, limit their availability. It can be feel awful to wait for things when the need is urgent or the desire is powerful.
     I know that even in my petition campaign, I find it a test of patience as I wait for many more people, both online and offline, to show more openness to educate themselves about autism so they can and will support my efforts. I wait to gain the attention of celebrities and others of influence, who can add their voices to this campaign and transform it into a movement (and it is movements which gain the attention of those in power). And I find my patience tested as I wait for the person (s) who can assist me with the marketing which can make it all happen. In my personal life, I continue to wait and endure my feelings of not fitting in anywhere and of not being validated and "not knowing," as I wait until I can contact a qualified, affordable person who can grant me a professional autism spectrum disorder (ASD) workup. This is something that I have been waiting for for decades. In my family, we are waiting for the settling of pending legal matters as well as complex, entrenched, personal issues to be resolved among relatives.
     Most children don't start out life patient, grasping the idea of delaying gratification. It is something that must be learned with growing up and many people never learn this quality. And if we don't, we can lose friends, spouses, jobs and other opportunties. When I write on this topic, I'm talking to myself as much as I am to anyone else. I don't like waiting for needed or desired things any more than anyone else does. Waiting does not have to be passive; there is such a things as "active waiting." In my situation, I can still keep circulating my petition in every venue that seems appropriate. And I can still keep raising autism awareness as I wait for others to "see the light" and for my own ASD workup. And whatever we are waiting for, whether it is to lose extra pounds, find a marital partner, settle a court case, see a missing loved one be brought home or find justice for them, resolve marital or relationship issues, or whatever, we all can do things as we wait. These things can make the waiting more bearable. Reaching out and connecting with others in similar situations is something that really helps and which I have seen over and over, in real life and online.
     How long, by the way, before I see that many more of you are taking the time to read my posts and even comment on them?
   
    
     

Why We Should Be Concerned About Autism

     Ever since I have been trying to spread awareness about autism among those in my social networks on both of my accounts, I have noticed a trend. I have noticed the same trend in my current petition campaign and efforts to gather signatures. I have noticed that, no matter how I have sought to make autism relatable to all, too many people have shown very little or no support for it. I realize that, if a certain thing has not touched our lives or our families, we are likely to be unconcerned about it or make any effort to educate ourselves about it. I have seen this in my efforts to raise awareness about missing people, even missing children. Many Facebook users got tired of seeing posts of missing people on their homepages and removed me from their friends lists, the main reason I have set up a separate page for missing/unidentified persons and crime victims awareness.
     In my current petition campaign, I have done all I can to make my petition as easy to sign and share as I can. I have addressed people's concerns about privacy, assuring them that Change.org only requests that information to verify identities and forward it to petition targets BUT that Change.org will not make any address public. I have assured people that they can remain anonymous by unchecking the "Display My Name Publicly" box there. I have assured people that getting their accounts hacked is very unlikely, that I have signed many Change.org petitions and have had no problem and not heard of anyone else having had any. And I have let people outside the US know that they can still help by giving them links to my Facebook pages where they can forward my petition, even if their signatures are not accepted. I have sought to show how autism affects all of society and every person. Yet, despite all this, I have seen far too many people who have not shown any form of support for this petition or seem to want to educate themselves about autism.
     Autism is a neurological condition that occurs along a very broad spectrum and affects the way a person perceives and relates to self, to others and to the outside world. Each person's autism is unique, therefore, it is often said: "If you have seen one person with autism, you have seen one person with autism." Autism is still very little undersood and is a young field, even though far more is known about it now than twenty years ago and even ten years ago. the "1 in 88" current figure counts only diagnosed people and does not count the less fortunate undiagnosed children with autism spectrum disorders (ASDs) without access to ASD medical workups, or the undiagnosed ASD adults from my generation and younger, who grew up before autism was recognized and diagnosed as a spectrum. For decades, the more severe, classic autism has been diagnosed and treated, though misunderstood as an environmental and "emotional illness" due to bad parenting, while the higher-functioning forms, like Asperger's Syndrome and Pervasive Development Syndrome--Not Otherwise Specified (PDD--NOS) were called other things. So many in the past, and today, had to grow up with unmet needs. Now I am aware that there are many people who still see the higher-functioning forms of autism, like PDD--NOS and Asperger's Syndrome, as psychological fads and not as real disorders.
I fear that such an attitude may be behind the lack of support I have been seeing for my petition campaign, though it includes adults with the more severe, classic autism.
     I'm thankful that my beautiful, precious daughter, diagnosed with PDD--NOS, and her peers, live in a day and age where there is much more autism awareness. Because of this, they can be empowered with the official diagnosis that provides them with the open doors to support services, legal protections and understanding. That was not the case with earlier generation, such as my own 1960s and 1970s generation. I grew up with a mix of differences that a number of those closest to me, and with my agreement, are convinced can only be explained as an undiagnosed ASD. When I was born to my 17-year-old mom, my differences were obvious. Very early, Mom took me to a doctor. "Put her in an institution as she will never be able to function in society," he declared. She, bless her! had ignored this advice. But she continued to take me to professionals to find out what was wrong with me. No one was able to make sense of my mix of challenges. But my withdrawn behavior got me the label of "emotionally-disturbed" and, later, "behaviorally-disordered." Early in life, I got the "mild cerebral palsy" label and later, I was diagnosed with epilepsy. I experienced much bullying from peers and adults tended to subject me to emotional abuse. I spent my school years in and out (mostly in) special education and two residential placements. One year, my peers bullied me badly enough to get me pulled out of the school in question at the end of the year. The following year, I was back in special education, where I would remain until the end of my school career. For a couple of years, I was prescribed a round of psychiatric drugs that produced bizarre mental side effects and produced raical changes in my personality. I cringe even when thoughts of many of my words and actions at that time come to mind. Because of all of this, I felt deprived of both a childhood and an education. And, even today, I carry the scars from those years.
     And my story is not unique. It is similar to the stories of young people with no access to ASD testing even now, and to the stories of many other adults from my generation and younger or even older. Society will not benefit from from daily being confronted with the frustration, confusion and even desperation of undiagnosed people with unmet needs. For such people often tend to visit upon society these frustrations, in the form of crimes, violent crimes and sexual crimes. When people's needs are not met and they have no outlet for helping themselves, what opitions do they have but in taking out their anxieties and desperation out on a misunderstanding society?
     We all should be concerned about autism because well over 70 percent of adults with autism, including diagnosed ASDs, are unemployed. They are the most unemployed people of any disability group (and this hold true in the UK). And when people are unemployed and don't have independently wealthy families, they typically use government programs as income sources. And many adults with disabilities, especially ASDs, are long-term users of government programs. All of this costs society money; we are missing out on many possible contributions and from many who could be paying taxes. Is this what we want?
     We all should be concerned about autism because when people have unmet needs due to inappropriate or no diagnosis and no support services, these individuals will feel anger, depression, frustration and these will often have few outlets. These people are keenly aware that they are "different" and that much of society is ignorant and unwelcoming. Adults with ASDs often develop mental health issues lead to heavy use of the health care system; so many are uninsured or underinsured. Many are homeless and homeless people are unable to help themselves, much less contribute to society. Since so little is being done to offer such adults "handups" to contribute to society and to pay taxes, these same adults have no choice but to use "handouts." The "handups" do cost us money, but they should save money in the end. This is what my petition is meant to address.
"Pay pennies now to avoid paying pounds later," applies here.
     We should all be concerned about autism because research tells us that people with autism are, much more than typical people, vulnerable to crimes. This is because the tendency to trust people and poor social skills makes it tricky for many to spot scammers or predators and to more easily become victims of crime, violent and nonviolent. Because of poor social skills and because of the pent-up anger many have toward an unwelcoming society, people with ASDs are also more likely to become accused falsely of crimes or actually commit crimes, especially stalking, assault, and sex crimes. And, on top of this, the phenomenon known as "special needs wandering," especially due to autism, contributes to missing people, especially missing children.
     We should all be concerned about autism because it can happen any time within our families. A relative, even an older adults, may have a suspected ASD and may seek an ASD workup and end up with an ASD diagnosis. As I know from personal experience, seeking a medical workup for an ASD evokes strong emotions in people. They ask: Why do you want your child (or yourself) to be checked out for this? What does this say about ME? If you get the ASD diagnosis, what next? How will this change your life? How will this change MY life? What will people think if they hear that shocking "A" word? What good will having a label do for your child (or yourself)? If you have young children or evenn nieces and nephews or grandchildren, how would you handle it if one (or more) ends up diagnosed with an ASD? And what if you are one, like me, who has grown up with a mix of unexplained differences that may very well fall under the ASD umbrella and want to get a medical workup for this? Whatever the case may be, I'm sure that all of us know people, even close friends, who have never "come out" about their ASDs because of their desire to avoid stigma.
     Now I'm sure that most people are rightfully sympathetic to and aware of the obvious needs and issues of those of any age, who have the more severe, classic autism which has been diagnosed for many decades. Of course, their need for awareness and the full range of support services ought to never be denied. I'm not by any means minimizing the visible needs of these lovely, precious people. And who knows how gifted and intelligent many of them are, if there was only a means for them to communicate? And, thanks to technology, like Ipads and "apps for autism," many are able to communicate for the first time! That is, if their families can afford these or get financial help for acquire them. My focus is the higher-functioning forms of autism because so many fall between the cracks due to invisible needs and society's ignorance.
    My beautiful, precious daughter gives all of us much pride and joy. As one autism awareness banner puts it, "Someone with autism makes me smile every day." But I doubt that this would be the case if my daughter's needs were not being met. And what will happen to my daughter and to many others when they enter adulthood? If they need support services, will these be there for them?