Why We All Should Be Concerned About Autism

It is now June 2013, and 1 in 50 children is the average figure for the rate at which children alone are now being diagnosed with an Autism Spectrum Disorder (ASD). This is though the DSM-5 revisions for mental health conditions has been published, and now Asperger's Syndrome (AS) and Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS). Months ago, the average figure for children had been 1 in every 80 children. That past average and the current one do not even count the adults who are getting diagnosed with ASDs, or underserved minority children and adults whose ASDs are undiagnosed. Months ago, a Facebook page was set up called "Missing Autism Alerts," solely to bring awareness to the sad phenomenon of "autism wandering" that is so prevalent among autistic children and those of any age with more severe ASDs. Many of these autistic missing persons are found safe, but many others are sadly found deceased. Usually in bodies of water. Also, there is the sad epidemic in the autistic community of the abuse and even killing of autistic persons, by caregivers and educators. All of these cases overlap with missing persons and crime cases yet still seem to be seen by so many advocates of the missing as separate. I don't think that this is intentional by these advocates, but it is unfortunate. It shows that so many of us don't realize that autism affects all of us. Therefore, we all as a society would stand to benefit if affordable autism-specific services would be accessible to all of those in all 50 US states who need them. Would such access to services provide us with the means to reduce the many missing autistic persons who are found deceased, and help prevent and reduce the abuse and even killing of autistic individuals by caregivers or educators? Isn't this something to think about?
     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. It is for the same reason I have set up separate Facebook pages for autism and other related issues. many people in my network don't relate to these issues and so do not show concern or support for these matters. However, missing persons, crime and autism do affect us all, if indirectly.
     In my current Change.org 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. Yes, I'm forever grateful to those who do support the practical effort in this petition campaign, to autism-specific services for all those who need them. Still, much more can be done by many more whom I know, in-person and in my social networks. More recently, I have also launched this petition at SignOn.org. On this platform, signers need to be in the US and be at least 18, for signatures to be counted as legitimate.
     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 understood 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 50" 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. Currently, while the "higher-functioning" ASD diagnoses of PDD-NOS and Asperger's Syndrome are no longer official medical diagnoses, I can assure you that they have not gone away and never will. They are just called ASDs. 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 know that some professionals see it this way!
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. It is also behind much of the obstacles I have faced in accessing ASD screening for myself.
     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." Mom had told herself that since I had "emotional problems" and "behavioral problems" that I would "outgrow it." 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 radical 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. Currently, I have an appointment with an ASD specialist two hours out of my area, but the appointment was scheduled 9 months in advance--last November with still over four months to go.
     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 options do they have but in taking out their anxieties and desperation out on a misunderstanding society? Yes, there are those among them who are fortunate enough to find their niches despite their differences. Because they have been able to work from their strengths instead of living based on their differences, they have not been defined by their differences. I know of a number of people in my own life, successful and well-adjusted, whom I suspected may have had undiagnosed ASDs.
     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 even 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. Will she be among the 70 percent of those with ASDs who fall among the unemployed? 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? Will you help to make a difference, or will you be part of the ignorance and inaction that still surrounds autism? You can make a difference!

http://tiny.cc/mrsahw
This is the link to the Change.org autism petition. I have shortened this link from the original to make it easier to remember and to share on Twitter, by email, and through Instant Messaging.

http://tiny.cc/vq5ztw
This is the link to the SignOn.org autism petition. I have shortened this link from the original to make it easier to remember and to share on Twitter, by email and through Instant Messaging.
    
    

    

Survivors

Survivors. A title so many of us use to give meaning and validation to our lives.

Survivor. A person who has experienced adversity, loss, and/or obstacles and is overcoming them.

Survivor. A person who has suffered and has eternal scars, things that we can see and observe.

Survivor. A person who has internal scars that we cannot see or observe but which are very real.

Survivor. What have you been a survivor of?

You have/are suffering the fear, anxiety and trauma of a missing loved one, not knowing where that loved one is, what has happened to that loved one, or even if your loved one is alive or dead.

You have experienced being diagnosed with cancer and are dealing with the fear of what will happen and an uncertain future and with pain and even financial worries of health care.

You have suffered the devastation and loss of a loved one at the hands of a murderer and you have a new mission in life, finding justice for that loved one and keeping your loved one's memory alive.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation, even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had not made me as He has; I may still feel regret, shame, guilt, fear, anger, and loss.

But I am a survivor, and God is using my life experiences to make me what I am becoming today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving  and forgiving.

You have known the indignity and cruelty of being sold for someone else's greed into a trade where you have have had to do things that no one should ever be asked or made to do; we call it human trafficking.

You have, as a child, been violated and told to keep it a secret and not ruin reputations; even today, you may never have told anyone because you fear not being believed or when you did tell, you have not been helped; you are one of the estimate 65 million US survivors of child sexual abuse.

You became pregnant as a teen and since no one wanted you in that condition, you were forced to abort your baby and were not even allowed to grieve; even today you are haunted with shame and guilt which you dare not share because you know you will be condemned by most people who don't understand God's grace.

Whatever we were survivors of, we have known pain, loss, grief, maybe shame, devastation, even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and  become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had not made made me as He has; I may still feel regret, shame, guilt, fear, anger, and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can see or imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving  and forgiving.

You have suffered the terrifying experience of being abducted, heing held against your will, wondering when you will see those you know and love, being violated, being brainwashed and maybe even resigning yourself to your fate, believing you will never be rescued.

You married a person with anger issues who had learned to resolve conflicts with fists; your partner or spouse uses you as a whipping post, controlling your money, isolating you, even hitting you and threatening your life.

You have suffered the unspeakable grief of losing a loved one to suicide; everyone, including you, are suffering not only agonizing grief but also guilt at wondering if somehow you could have prevented it.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation, even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had not made me as He has.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can see or imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving and forgiving.

You grew up in a very dark place with illnesses of the mind where you thought and acted in ways that were a total mystery to yourself and those around you; you lived and still may remain your closet, in fear, guilt and shame and in terror that you will be found out and be stigmatized by all.

You grew up experiencing a condition called epilepsy and seizures; you have spent your life covering up your condition, even calling it and your seizures by other names and going to great lengths to hide it, including your medications and covering up the side effects.

You grew up being called stupid, spoiled, lazy, clumsy, and were placed in schools that stigmatized you for life; you grew up with shame and feelings of guilt and worthlessness, hopelessness and wondering if there would ever be a place for you; all this was because your autism spectrum disorder (ASD) was never properly diagnosed.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation and even helplessness and the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive, and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had made me different from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving and forgiving.

You grew up in a home where you were neglected, too much was expected of you, or you may even have been hit, beaten, threatened, and where you felt the helplessness and hopelessness of an abused child; even today you may still be haunted by your trauma and wonder if you can trust anyone.

You grew up with a parent (s) who loved you but whose substance abuse addiction overpowered their love; you were neglected and may have even seen or been abused; you felt anger, fear, shame, loss, and hatred for your parents.

You grew up in a home with a parent who used you for his or her sexual pleasure; you feel shame at what has happened to you, helplessness at preventing further abuse, and anger at your other parent for not coming to your rescue; even today, you stay in your closet because you fear that you would be judged or not be believed.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation and even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently and that God had made me different from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God has made me to be, whole, strong, caring, loving and forgiving.

You were in a terrible car crash and were left with permanent disabilities where your loss is as real and as painful to you as the loss of a loved one would be; you have lost a carrer you loved, so-called friends, a way of life, even your old identity.

You lived through a terrible disaster, man-made or narural and you suffered the shock, devastation and loss of a way of life, a loved one, even permanent physical injury; whatever you have lost, you can never forget.

You are a veteran, serving your country and you have done and seen things that no one but your fellow vererans can understand; you may be home but the war still may be going on here for you as you can never be the same person, emotionally or physically, that you were before you left.

Whatever we are survivors of, we have known pain, loss, grief, even shame, devastation and even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, presevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently and that God had made me differently from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving and forgiving.

You grew up in poverty and want, with a good but uneducated mom who had to use government assistance and you and your family were among the "less fortunate" and seen as charity; often your only source of nutrition was the free lunch school program at your public school; you had to struggle to get an education and then a job but you did it.

You grew up with disabilities, visible or invisible, where what is easy and taken for granted by everyone else has always been a struggle for you; you may wonder why you have been put on this Earth, why God has made you as He has; you want nothing more than to be accepted for who you are and to be allowed to be independent, productive and valued.

You grew up as the target of peers who plugged into your vulnerabilities and who bullied you extensively; the adults in your life did not handle your situation well and you felt that you were not heard, that you did not have a voice and that you did not count; even today, you may have a tough time trusting people and their motives.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation and even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had made me differently from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and beyond what I can imagine.

Survivor. What if our lives had been easy, pleasant and fun and only good, wonderful, exciting things happened to us with nothing to survive?

Survivor. If I had unscarred by life, I would never be able to develop the virtues of compassion, wisdom, patience, courage, forgiveness and perseverence.

Survivor. I may have been led to believe that I am doomed to lasting failure, and to repeat the mistakes of the past.

But I am not a victim. I am a survivor and I'm free to break the cycle of abuse, addiction, failure and other realities that may have been my life.

I am a survivor; God's grace has brought me through, caused me to over come and to continue to overcome until healing is complete.