Two Simple Things You Can Do for Autistic Persons of All Ages

Many teens and young people with autism have been receiving special services during their school years. They will age out of these services at age 21. What will they do then?

Many poor or minority families don't have access to their state's Medicaid or may not know about it. Their autistic children may not even be diagnosed yet.

A couple have gotten divorced because one spouse was fed up with the other's "weird" ways and seeming inability or refusal to communicate or understand. The spouse has udiagnosed autism.

A family in a poor apartment complex have a child that they don't know what to do with. Neighbors see him as a little brat. This child has undiagnosed autism.

A man has been fired from every job he ever landed because his bosses thought his lack of eye contact was contempt for them. A woman has a history of failed relationships because of a lack of communication skills. Both have undiagnosed autism.

Lack of services or aging out of them are what all these scenarios have in common. Why should we be interested in this? What does this have to do with us? We should be interessted in this because when peopele's basic needs for acceptance and understanding are not met, they may get angry and bitter and take it out on us. They may end up on benefits like Supplemental Security Income (SSI) or Social Security Disability (SSD) or enter the mental health or even the criminal justice system. In any case, we will all pay. The moral reason we should care is that these are people who also have the rights to "life, liberty and the pursuit of happiness."

If you are one who believes that autism is a disease that children outgrow and that there is a cure for it, you should still care about this. The reason is that many poor or minority families, as I already mentioned above, have children who need services though they can't access insurance or pay for these services. You should care because of generations of autistic children who are not yet born.

Click here to sign this autism petition

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Autism, God & the Bible

Much has been going on these past months and I have not posted about autism or autism-related issues. That is certainly not because these are no longer important, or important to me. With all that has been going on with the threat of ISIS, worldwide terrorism, and the ever-increasing loss of a moral compass in the US, I have not focused on autism or aut ism-related issues. But I have remained fully aware of the raging, heated debate in the vaccine controversy, the alarmingly high rate of missing autistic person cases related to wandering, and the hostility to certain organizations for what is seen as their patronizing attitude toward the autism community. Now there is an massive tragedy of historic significance in the country of Nepal that claims an ever-rising death toll of an estimated 4,000. With things like this, it makes what we may face here in the West, especially in the US, minor. I'm talking about objectively speaking, as everyone's own problems feels like the worst problems in the world. I'm not one who likes to throw around the platitude, "People have worse problems than you; count your blessings." Everyone's own life journey is unique.

Is Autism Man-Made?

The diagnosis of autism spectrum disorder (ASD), with its variants (Asperger's Syndrome, Pervasive Development Disorder, Childhood Disintegrative Disorder, Nonverbal Autism, and so on) have only been in existence for several decades. Where were people on any end of the autism spectrum at before the diagnosis of ASD was created? They had to be around somewhere; it can't be that all of these people suddenly popped up out of nowhere with the official diagnosis. Back in the 1930's the diagnosis of severe, nonverbal autism did exist but autism was not yet seen as a broad spectrum and those so diagnosed were seen as facing bleak futures. They were sometimes called "changelings" and the condition was called "early infantile autism." There who see autism as a "disease" that only appeared on the scene due to vaccine injuries, see autism as something that has been with us only since the diagnosis of ASD was created. Then there are others of us who see autism not as an alien "disease" but as a neuro-biological condition that has always been with which has only recently been recognized for what it is. Can both sides actually be right or is only one of the sides right? While I know that the vaccine controversy is a very emotional, hot-button issue, studies are indicating that vaccines do not "cause autism." It used to be believed that this was so, but now the cause of autism remains unknown. In that case, then maybe autistic people have always been with us and have just been called other things. In fact, most of them either existed in restrictive settings like institutions or were sent to "special classes" and tightly controlled at home, believing their primary need was physical protection. In my own experience, my own daughter, now 15 and finishing up 9th grade in high school, was originally diagnosed as having "Pervasive Development Disorder" and her diagnosis was switched to "autism spectrum disorder." She is doing very well in school, making good grades and her teachers love her. In my case, when I was growing up, I was labeled many things, and my problems were considered either psychiatric or behavioral in origin. After decades of having no idea "what was wrong with me," I was never able to access as formal diagnosis as an adult until two years ago. The diagnosis came too late to do me any practical good. It only gives an explanation for many of my issues that were blamed on "emotional problems."

Is Autism in the Bible?

I don't know if you read the Bible or not or count yourself a follower of Jesus or not. It is true that there is absolutely nothing in the Bible about autism. But then, the Bible was set in another time and in another culture. It does not contain a word about many other things that we consider important today, because many scientific discoveries had not been made yet. For that matter, cancer was not a diagnosis. The closest I can get is in the New Testament when Jesus healed many people, including those who were considered demon-possessed. While I believe that demon possession is real and probably exists today, I wonder if any of those people counted as "demon-possessed," could have had unknown and undiagnosed conditions like autism, epilepsy, or certain mental illnesses. Though the Bible says nothing about many things we deal with today, including scientific discoveries, it is still relevant to these matters if you believe that God is the Creator of all and the ultimate Author Who inspired men to write the Bible. Of course, if you do not believe these things, there is nothing I can say to convince you otherwise. But it makes little sense to me that autism just showed up on the scene a few decades ago and soon will be "cured" when the cause of this "disease" is found. While I sympathize fully with those who have had negative, painful experiences with being autistic or loving someone who is autistic, I think this "cure" position is a mistaken one.

Following Jesus, the Church & Autism

What are the ramifications for autism and the Christian community? Can autistic people be found in local church fellowships? How do they see God and their place in the Christian community? In my experience, the few autistic people who have been reached and are part of local church fellowships, are those with more severe, nonverbal autism. Many families with autistic loved ones, like many people with other disabilities, simply do not feel welcome in our church fellowships. Usually this is not because of malice but because Pastors and church leaderships do not know how to set up their fellowships to welcome disabled individuals, much less assimilate them into the life of their congregations. I have seldom seen it happen; there are very few books on the Christian market about autism or other disabilities. The rare ones that exist are never written directly to disabled individuals, but to church fellowships or to parents. I know that this is not the fault of Christian retailers but it shows how the Christian community has neglected those with autism and other related disabilities. I know that Joni Earackson Tada, totally paralyzed and an outstanding Christian leader in the field of disabilities, has done much to bring awareness to severe and physical disabilities. She has touched countless lives in that community. But much still needs to be done to reach and welcome those with autism and other, related, invisible disabilities. What does all this tell those of us who love people with autism or related disabilities, or who live with these ourselves? Nothing good. I see very few autistic teens or adults in the Christian community. They do not feel welcome. They are aware that the Church values non-autistic behaviors like eye contact and social interaction and know that these are considered very important in the lives that the Church and in the teachings of Jesus. And so the autism community is largely unreached and even those who love and follow Jesus do not want to do so within the context of local church fellowships. If you read the Bible, especially the New Testament, you find no verses that command us to "go to church." It is true that followers of Jesus are to meet with each other, worship together and serve God together. This does not mean that we always need building to meet, for meeting can be done anywhere. In any case, autistic people seem to generally feel like outcasts and outsiders to the Church and often sympathize with the GLBT (Gay, Lesbian, Bisexual,Transgender) community. I have often seen this. It is unfortunate. If you read your Bible, you read in the Goepels that Jesus hang around with misfits and outcasts, not just to welcome them but to call them to repentance and to lives of blessedness. If you are a member of the autism or larger disability community, I encourage you to get a Bible and start with the Gospel of Luke, to see how Jesus dealt with people.

Please sign my autism petition at Change.org.

Another Case for Why Federal Funds for Autism Services Are Needed

Early last week, I learned of a case that tore at my heart.

I watched this mom speak to the TV Psychologist Dr. Phil McGraw on TV, both on Monday but mostly on Tuesday. I could see only parts of this interview on Monday because my daughter was in the room and the show could be disturbing to her. Yes, the situation around the world is grim, but this sad story of this mom and her daughter reminded me that grim situations continue right here at home and must continue to be addressed even as we address the dire ISIS situation.

Even here in the West, we all pay the price when people's major needs are unmet, as this mom's story proves.

The young mom I'm talking about is Kelli Stapleton. Early last week, Dr. Phil interviewed her in a two-part interview. Obviously broken and remorseful, she recounted how she utterly despaired of life. Isabel, nicknamed "Issy," presenting with severe and nonverbal autism, was also violent. Her autistic "meltdowns" took an extreme, violent expression. In reading this post, please keep in mind that few autistic people, even nonverbal, classic autistic persons, are violent near to the degree that this mom reports that her daughter, Issy, has been.

As Dr.Phil interviewed Kelli, I was wanting to get into the story but we had to cut it off, as my daughter came home from school. The next day, I was able to hear the rest of the interview. Kelli was tearfully and remorsefully recounting how she drove herself and her daughter, Issy, in her van on the way to Elberta, Michigan. She told how she attempted to kill her daughter and herself. "Why?" she was asked. Kelli detailed how Issy had, during meltdowns, two separate times attacked her so badly that she had to be treated in the hospital emergency room. Also, Issy also attacked her sister; Kelli feared for their lives. Their dad, her husband, had divorced her, leaving her alone to deal with all this stress. While I in no way support Kelli's actions in this instance, I can see clearly how she had "snapped" because she saw no other options and had no support to draw upon. "Why not place her in a residential setting?" she was asked. She stated that because she lacked proper insurance, the residential home she placed Issy in would not keep the girl. Also, they saw it as their mission to "re-integrate Issy back into family life."

This mom was arrested, charged with attempted murder and now sits in jail awaiting trial. I was glad that Dr. Phil offered to help this entire family. I was sad and rather angry, however, that almost right away, many in the autism community used Kelli's and Issy's stories as a springboard to protest "autism caregiver murderer" and is calling on Dr. Phil to withdraw all efforts to show any support for Kelli's defense. Autism advocates wasted no time setting up a Facebook "event" for this purpose, as well as to "support all victims and call for justice for them." "Justice for Issy! Justice for Issy!" and "Lock her murderer up for life!" and "Bring this killer mom to justice!" were rallying cries.

Frankly, when I learned that Issy, her sister and Issy's dad are now making their lives together and "and are happy" according to the father, I frankly was annoyed though glad that Issy and her sister seem to be doing better. Tempted to judge this dad for leaving his family to cope alone prior to Kelli's desperate act, I'm a bit angry. Why do men and fathers get off responsibility?

I get it. I get it, autism community. To a point I can see why you are so mad at Kelli and want to see her pay in full. Many of these autism advocates see Kelli's desperate act as an insult to autism and that those with autism "are unfit to live." As many autistic adults, who are involved in this community, have "theory of mind" issues that make it hard for them to have empathy for this mom in pain, they are unable to see the situation from her perspective and to grasp how she could grow so desperate. . They see this case solely from Issy's perspective. But the self-righteousness of typical parents of autistic children is more difficult to understand. Maybe these parents have access to services that enable them to cope with their stresses of raising their autistic children? Am I missing something here?

Even if you do not feel a shred of compassion for Kelli, surely you should agree that all families with autistic loved ones need to have autism services accessible, regardless of their ability to pay.

Please sign this autism petition at SignOn.org.

Please sign this autism petition at Change.org.

My Open Letter to the Autism Community

In about a week it will be the official month that will be set aside for autism awareness and support. Online, I'm seeing calls to "light it up blue for autism awareness" to "go red for autism," and to "go gold for autism support." This goes on every April. And yet, we are still not getting any closer to seeing that awareness and/or support from larger society. We may be making limited progress, but not much. That's my observation and research. Who are all of those among us who are seeking awareness and/or support for ourselves or those in our lives who are on the spectrum of autism?

I'm addressing this to all us parents who have children or relatives with suspected or diagnosed Autism Spectrum Disorders (ASDs).

I'm addressing this to all of you who work with those who have suspected or diagnosed ASDs, whether as professionals or volunteers.

I'm addressing this to all of us who have suspected or diagnosed ASDs.

In my years after my daughter was diagnosed with an ASD, and I self-diagnosed myself with an ASD until I finally saw it become official, I have witnessed disturbing trends in our community. I have seen factions, wars, and much animosity, ill will, and even hate erupt in this community. I have experienced this hate myself. I have had "falling-outs" with other individuals in our community. I blame myself for being part of those "falling-outs," but I know that the other parties were, as I saw it, overreacting out of their own unresolved personal issues. Just the other day, a person in my community decided to publicly discredit and attack another person, also a fellow member of our community. This person's Facebook thread garnered many comments; people were rallying to this individual's side to provide support. This person devoted a blog post to the discrediting of this fellow ASD member. I suppressed the desire to read the blog, so as not to contribute to gossip. I do not know the story behind any of this or the other person's side of the story. But this is just one example of the hate that often comes out of the autism community. If you do not identify yourself as a person in this community because you have no connection with autism, you may learn some things. You may see that autism affects people intensely and people's different experiences with autism have produced factions. For we know factions exist in any people group.

Examples of my bad experiences with others with ASDs have been all online. Over two years ago, I started an autism petition on Change.org and I was seeking support for it. Aware that Change.org offers the "Embed" option for its users to use to put any Change.org petition on their blog or website, I sought this blogger's help. I posted appeals on my profile and on several Facebook pages to my friends or "fans." I shared the person's public email address that is at her blog. I asked people to share my petition with her and to "flood" her email inbox with appeals. I waited anxiously for this person to respond and to offer her support, hoping she would share my autism petition with her substantial following. When this person responded, it was not to show me any support! I received an angry email message demanding that I instantly remove every post containing her email address (which was public). This person accused me of harassment and invading her privacy. She kept up with her angry emails and flooded my inbox until I removed them. I found myself banned from her Facebook page. Another time a Facebook user with an ASD blocked me twice. The first time she blocked me was when I volunteered to share one of her posts at this blog over a year ago. My laptop was not working properly, so my copy and paste function was malfunctioning. Her piece was, I thought, unclear in spots and hard to follow so I reworded and rearranged some of her phrasing and sentences. When she expressed displeasure, I undertook to copy and paste. My copy/paste feature still was rather "off" and did not work well. After I showed my version to the person, she still expressed displeasure! Frustrated, I sent her this, "I tried!" Minutes later, I found I was blocked with her name showing up in black, her photo gone and her profile invisible to me. On my blog, she left an angry comment, "DELETE THIS NOW!!!!!!" This person "re-friended" me months later, but blocked me again after I had a falling-out with someone else who was assisting her then; I remain blocked to this day. A day ago, I learned that I have been banned from an autism page which I have "liked" and shared. My story for the website for the page was never published, either. My efforts to work things out with a manager of the page did not stop the ban, either. These are the deeply held beliefs about autism that our community cannot agree on, and we war with those who disagree with us. Autism is a disease that needs to be cured. Autism is a difference that needs to be accepted and celebrated. Vaccines have caused autism, or other environmental toxins. Genetics cause autism and vaccines are not to blame. ABA is a wonderful therapy that has helped many autistic children. ABA is a terrible form of abuse and hurts autistic children. Autistic behaviors should be changed or controlled so autistic people can live and function in society. Autistic behavior should be accepted and any effort to change it is a betrayal of the autistic person, or evil abuse. All the factions of our community feel deeply about these positions. There is nothing wrong with feeling deeply about positions and being vocal about them! We run into problems, though, when we expect others to agree with us and discredit them when they don't. Parents and relatives of autistic children often resent, distrust, or even hate ASD adults because they have encountered what they see as lack of support. They love their children very much but do not often, if their children have more severe challenges, see their children's autism as positive. Many of us adults with ASDs often dislike, distrust, and maybe even hate, parents of children with autism. Many ASD adults see these parents as "insulting autism" and "demeaning" ASD persons by calling for a cure or even working to change ASD children's behaviors through any therapy like ABA. From my observation and research, most of those who work with those with ASDs seem to lean toward the "cure" side rather than the "acceptance" side. Saddest of all, though, even people with ASDs who agree on "acceptance" or "cure" have been known to feud! I know this from experience!

Each faction in our community is entitled to believe what you want to believe. I may not believe that autism can be cured or that the bulk of money for it should go to research to "find the cure." But I fully respect any parent, person, or professional who does not like the challenges of autism and wants to see its demise. I may not see autism as a disease caused by vaccine or other environmental toxins. But I respect anyone's position on this, as vaccines and other toxins can indeed make us very ill if they are not administered correctly. I may not agree with all those who believe that autism is a terrible tragedy that needs to be mourned. But I can fully respect that families of those with more severe autism challenges suffer and view autism as the cause of their suffering, and see autism as something that should be eliminated. We are not entitled, however, to reject or withhold our support from those who disagree with us. This principle applies to those in the autism community who strongly disagree with us. We cry out for society to accept our autistic children, and to accept us as people with ASDs. We can see that we aren't getting closer to being embraced by society in general. Could it be that society is turned off by the wars and factions among us?

How can we expect society to accept us if we don't accept others in our community who disagree with us?

Wherever you stand on these issues, I hope you will support my autism petition.

Please sign my autism petition at SignOn.org.
Please sign my autism petition at Change.org.

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

February 9 Autism Sunday

You may be aware that many consider it as a generational disease, of these current two decades, that we need to find a cure for. It's incidence among children has soared over these past 20 years. Many of us may blame vaccines for this. A growing number of others of us view this condition simply as a difference of thinking that society needs to understand and accept. A growing number of us adults are being diagnosed with it relatively late in life. Many of us consider it as a different state of seeing the world and relating to people and to ourselves. A different state of being. A matter of identity.

What Is February 9 Autism Sunday?

This is a day that the autism community has set aside in an attempt to dispel stereotyping and uninformed views of autism. It may not be an official day but it's important to the many families with autistic relatives and individuals who know autism's reality. This includes diagnosed or self-diagnosed people. By individuals I also include those teachers, paraprofessionals, counselors, and psychologists who work with autistic people, children or adults. This adds up to many people! Daily, my Facebook Newsfeed is filled with posts, either by parents who call for society to welcome and accept their children or other relatives or by ASD adults who call for society to understand them and welcome them. Months ago, the US Congress held hearings supposedly aiming at "helping autistic people." Instead, we who listened to some politicians and others speakers, heard autistic people referred to as "tsunamis," as "burdens," as "tragedies" and as "drains on society." Reader, these demeaning terms were made about a group of people, many who heard these names and knew exactly what they meant!

My Experience

About 11 years ago, my beautiful, precious daughter was officially diagnosed with Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS)at almost age 3. PDD-NOS is a form of autism. Thanks to early childhood intervention and intensive love and affection and input, she has spent her school career mainstreamed, getting good grades and participates in our local church youth ministry activities. She is currently 14 and in the 8th grade. She does have social challenges with making and keeping friends. I, her mom, had self-diagnosed with ASD years ago. This is because, from infancy on, I was never a "normal baby." It was at age 5, when I lasted only a day in kindergarten, that my behavioral challenges showed up and stayed with me throughout my growing up years. I spent my childhood and teen years in and out (mostly in) special education settings. I entered adulthood much unprepared to function in the outside world, and always wonder why I was so different from everyone else. My problems were always seen as emotional or behavioral in origin, but I was never satisfied with that explanation. After spending years accessing an official ASD screening, I opted to seek one from an autism center two hours away (each way) from my local St. Louis, Missouri community. The doctor doing the screening is using the results from the January 3, 2013, intensive cognitive tests I took then, along with an ASD interview, a physical exam, and a Tuesday, February 4 phone API interview with my mom, to come up with my results. I remain apprehensive as I await the results to be handed down! Will it be a time of discovery or one of ending up with even more questions than when I began?

What Does All This Mean For Us?

Every one of us in the autism community know what this means for us. If you do not know someone who has an ASD diagnosis or is self-diagnosed because of their life experience, that's because they probably have not disclosed this to you. The media only occasionally cover families of ASD children, and almost never cover ASD adults. They briefly did this because a celebrity singer, Susan Boyle, came forward with her late in life ASD diagnosis. You may think of famous autism figures like Temple Grandin, Stephen Shore, John Elder Robison, or Liane Holliday-Willey. There are other less well-known, autistic people who have experienced success, starting their own businesses or finding satisfying careers in writing, computers, or other careers. However, for every instance of this, there are many other ASD people who are unemployed or underemployed, and over 70 percent are unemployed. Many of these use either Supplemental Supplemental Security Income (SSI) or Social Security Disability (SSD). Worse, others have turned to lives of crime or are homeless. Many aging parents, their ASD adult children living with them, fear what will happen to their adult children when they die. Horrific abuse of autistic children and adults runs rampant, being committed by bother caregivers and professionals. The heart-wrenching story of the high-profile autistic nonverbal teen who wandered off and was found dead two months later, is only one sad example of "autism wandering" that contributes to missing persons and kills autistic persons. What does it all mean? Lost contributions. Lost full citizenship. Lost Lives.

Being Part of the Solution

We can be part of the solution. You may wonder, How? First, you can educate yourself about autism; below I'll give a few sites where you can do just that. Over a couple years ago, I launched a Change.org autism petition, calling on the US government to send $$$ to each of the 50 states, so each state can offer affordable autism services to anyone who wants/needs them. (This will also create many new jobs and stimulate the economy!). You can sign that Change.org autism petition here. Later, I launched the petition at SignOn.org. You can sign SignOn.org autism petition here. Thank you.

What do you think?

The Autism Society

The National Autistic Society

The photo at the top of this post is courtesy of Tina Marie Crane. It can be found here.

My Holiday Wish: A Little Bit of Your Time To Show Me Your Support

I know that this is the busiest time of the year, with all the stresses of this holiday season making so many of us feel pressured to do it all, so that our families and our children will "have a decent Christmas." Or, if you are one of those whose at a rough patch in your life, especially financially, you are afraid and depress, right? I have a holiday wish appeal, but it should not stress you out as I'm not asking you for a penny. I'm only asking for a little bit of your time, and it would mean a lot to me.

What Am I Asking You For?

I'm asking you to show me your support for this blog, or for materials that I have included here. I know that so many of you have shown your support in different ways, by signing my autism petition, and circulating this petition. Many of you have visited one or more of my Facebook pages and "liked" them. Many of you have hit one of the "Follow" or "Subscribe" options at this BlogSpot, and have become regular followers. My holiday wish is to see this BlogSpot continue to grow. I have set it up to help the general public, and with your ongoing support, I can help more people and help them more effectively than I am now.

Simple Ways To Show Me Your Support & Help Me Help Others

1). Hit the "Follow" button that floats at the top of your screen as you scroll down this page, to become a follower of this blog.

2). Hit one of the multiple "Subscribe" options on this blog, to get my updates in your email inbox or in a Feed reader. It's FREE!

3). If you have not done so yet, please sign my autism petition at Change.org. If you have signed it, please send invitations from the site, so that others can sign, too.
4). If you have not done so yet, please sign my autism petition at SignOn.org. If you have signed it, please send invitations from the site, so that others can sign, too!

5). You can visit my first Facebook page, to "like" it and/or to circulate it. I'm looking to reach the 2000 "likes" milestone.

6). You can visit my static page on this BlogSpot, which houses all 7 of my Facebook pages with "like boxes." With just 7 clicks on each box, you can "like" all of the pages without visiting any of them. You can also find them on my homepage and do this same thing there.

7. You can visit my static page on this BlogSpot, which houses my autism petition on widgets from Change.org and SignOn.org; you can sign both of them there, and share them too. All that can be done without visiting either site.

8). You can visit my static page on this BlogSpot, which contains a brief survey where you can give me your honest feedback on how I'm doing here, and tell me what you would like to see. This would help me know what you need and want!

9). Comment on any post. I wish that Blogger had a better commenting system, and that you did not have to set up an account to post a comment on a Blogger blog. I have no control over this, but I hope to figure out how to change or improve this commenting system, if I can.

10). If you like any post or this BlogSpot, please share! I have set up many "share" options.

Mobile phone visitors, I have not forgotten you! I hope to find out ways to make this blog fit all screens. Blogger, unfortunately, does not make that easy. I hope to resolve things on my end, so you can enjoy this BlogSpot too. I plan to set up a website and hope to link it to this blog, and make changes that will make this BlogSpot better so I can help more people, and help them more effectively! Warm wishes to each of you over this holiday season!

Sincerely,

Lisa DeSherlia

The first photo that is found at the top of this post is by "natbell" and it can be found here; the second photo at the top of this post is by "Alvimann" and it can be found here. Both these photos are courtesy of MorgueFile.com.

My Change.org Autism Petition; Will you Sign It? Will You Pass It On?

Petitions by Change.org|Start a Petition »

A New Open Letter To the Autism Community

To all parents of children with diagnosed or suspected autism, autistic individuals, diagnosed or self-diagnosed, autism professionals and autism specialists:

I realize that I'm writing to a people group who share one thing in common, that you have contact with the condition we call autism, in one form or another. That is true whatever your political views, your religious beliefs, your lifestyle, your stance on vaccines, the cause (s) of autism, whether it is a disease to be cured or a difference to be celebrated, whether autistic children should be taught to "fit in" to accommodate themselves to society or society should be expected to accept autistic people exactly as they are. I have a wide variety of you in my networks.

I know that many of you have created and maintain blogspots, many of you have set up Facebook profiles or pages, many of you are writing books, and some of you have set up autism nonprofits. I know that you all have another thing in common, whatever your connection with autism. You want autism services to be available to all people who need them, regardless of their ability to pay. I know you do because I have read many of your blogs and some of your books. I have seen many Facebook posts. We know that many people remain underserved or unserved. Yes, there are fine nonprofits that seek to fill the needs of a number of these. But I notice that almost all of them have been set up to serve autistic children, and they tend to be underfunded. Adults? Services are mostly nonexistent if you are an adult who wants to get checked out to see if you are autistic or want autism services for yourself.

When I use the word autism, I mean all levels of function, from those who are nonverbal and classically autistic, to those who are verbal and are (for want of a better word) higher-functioning. Yes, I know that level of function has little to do with intelligence when it comes to this population. You all know this but most outside our community don't know this. They also don't know that every autistic person's autism is different and unique from every other person's autism. But we know this and I'm including this here for the benefit of those who don't have any known connections with autism, are if they do, remain uneducated about it. We also share in common that we are disturbed at the alarming high rate of autistic children and sometimes autistic adults, who go missing because of wandering. We also share in common our sadness and anger at the way so many in society continue to misunderstand, mistreat, and abuse autistic children and adults.

Many of you are in my networks, especially on Facebook. I have had bad experiences with some of you, usually due to misunderstandings and conflicts that never were resolved. I know that so many of you have been officially diagnosed, some of you who have children who are autistic also. You know that I have never claimed to be anything but self-diagnosed, as I have never had access to an affordable but qualified autism professional who can give a screening leading to a diagnosis. I know that some of you who are diagnosed and many parents with autistic children, frown on people like me and view me as a fraud or imposter of sorts. I know this because of comments made. I had made an appointment for an autism screening about eight months ago and I plan to go to this screening in a couple of weeks. The autism screening is a four-hour round trip, but it is the only one that my insurance covers. No, I don't know if I will end up with the autism diagnosis, another diagnosis, or no diagnosis at all.

Whatever happens as a result of that autism screening, I will stay a member of the autism community. I have a daughter with autism and she is 13, in the 8th grade, in middle school, and active in her church youth group. Without her, I would never have gotten educated about autism, identified myself as possibly sharing her condition, and I would never have started an autism petition to get government funding for universal autism services. My signature is high enough that the US government won't get these signatures until long after this shutdown and when we have another US President. In the meantime, I am still collecting signatures and I need every one of you in the US and at least age 13 (minimum age to sign at Change.org), to sign this petition and to share it. Since I have links to the petition all over this blog, sharing this BlogSpot is sharing the petition. Will you click here to sign?

Autism Affects Us All & What This Means

We all know that regularly updating your materials, whether you are talking about a website, a Facebook page, a talk show, a crime or a missing persons case, or anything you work on, is crucial and adds greatly to one's credibility. One cannot expect a loyal following if one does not work to keep these supporters "in the loop" about what one does. And so I have applied this not only to my Facebook materials but also to my autism, launched at Change.org and now at SignOn.org, to be more inclusive and to spell out to supporters, would-be supporters and to our government, exactly what I would like this petition to do and the sources of the funds which I am requesting. For, when I created it, I was aware that many people would, rightfully, be wondering, "Where are the funds going to come from? Do they even exist? And if so, how would such programs be implemented? And what about services for children and teens that are in danger of being cut in the name of "balancing the budget"? My hope is to go a long way toward answering these questions in this blog. I believe that you will be more motivated to support the petition.

Over a year ago, I had launched this petition on Change.org and through that site, I have been circulating this petition all this time and still am. Because of Change.org's settings and because I did not initially check my petition targets, The U.S.President and the House and the Senate, no signatures are emailed to these targets. They will never be delivered to these targets until I am able to somehow print up all the signatures and all comments, when my goal is reached. I would have to deliver my printed up petition in person and at this time, that remains a dream. Today, I have launched this petition at SignOn.org, another website that hosts petition. Even if you have signed this petition at Change.org, you can sign it at SignOn.org. At this site, when you sign, your signature is automatically delivered to the U.S. President, the House and the Senate, unlike at Change.org when you sign. At this site, on any given day, if my petition or any petition does not generate enough signatures, SignOn.org will close it. This is one big reason why I call on all readers of this blog to support my petition, if you are at least 18 (the minimum age at which you can use the SignOn.org site). Even if you are not in the US, you can still share the petition off my petition page with your friends in the US. My page can be found at Autism Affects Us All: Please Sign & Keep SharingThePetition. I am now continuing to promote my petition from both Change.org and from SignOn.org. The only difference between my petition on either site is that I have more of a description there and my letter to my targets is longer there. Since MoveOn.org limits characters, my petition description and the petition letter to my targets is shorter than at Change.org. This petition can be signed at both sites as Change.org and SignOn.org have no connections with each other.

First of all, where will all the funds I call for come from? They must come from somewhere. First of all, it has been brought to my attention that fund had been set aside for services for autism, and, to this day, this legislation for autism has not yet been fully funded. Let me provide some history, according to Wikipedia. On December 19, 2006, President George W. Bush signed into law the Combating Autism Act of 2006. This bill was meant to provide a package of research services and diagnostic services for children and to detect autism in toddlers, among other services. The funds for these services were never appropriated, though. On September 30, 2011, President Obama added his signature to the Combating Autism Re-Authorization Act of 2011 (H. R. 2005). You can read the text for this, in pdf format, here: http://www.gpo.gov/fdsys/pkg/BILLS-112hr2005ih/pdf/BILLS-112hr2005ih.pdf. There were $231 million that were supposed to be appropriated for different autism efforts. However, even though the Combating Autism Act was re-authorized, to this day, it has not been fully funded, according to Politifact, a website full of "fact-checking" information about politicians and legislation (http://politifact.com/truth-o-meter/promises/obamameter/promise/82/fully-fund-the-combating-autism-act-and-federal-au/. Therefore, my petition calls for these $231 million. already set aside for autism, to fully fund, and appropriate, the services that they were meant to fund in the first place. For this reason, my petition has become more inclusive and, because of the unfunded autism legislation, my petition calls for the protection of those services that are meant to serve autistic people age 21 and under, also. This makes my petition more inclusive and should attract support from many people, including those who young children who are diagnosed with autism and are NOT thinking in terms of them becoming adults. It should also attract more support from many outside the autism community, who still think only of children when they hear the word "autism." For this reason, I have slightly tweaked my petition title from "1,000,000 People for Better lives For Adults With Autism" to "1,000,000 People For Better Lives For All Persons With Autism." This gives all of you who are reading this, even if you have signed this petition (and I thank you for that!) all the more reason and "ammo" to freely circulate this petition, whether by email, Facebook, Twitter, online chat, other social networks and yes, word-of-mouth, through my shortened URL: http://tiny.cc/mrsahw.

The mission of my mission has not changed one bit and I still call for all those services for adults with autism, 21 and over, who have little or no access to these services. These services simply do not exist or, if they do, they are typically available through private nonprofits and are unaffordable to most adults. Yes, I'm sure there are exceptions. In my petition, I call for funds to be offered to EXISTING services for those with developmental disabilities who serve those with autism. Typically, such services are directed to children, teens and maybe young adults, to age 21. Sadly, it is like there is no life for any adult with autism who passes the age of 21. Want a diagnosis, if only to find answers about your unusual past? Too bad, because, unless you are fortunate to live in an area where a qualified professional diagnoses adults or have the time and money to go to such a professional, you are basically doomed. You will not know the relief of a diagnosis, a community and possible services. This sad fact also extends to poor and many minority people, children AND adults and I hope that the exclusion of many less-fortunate children can be addressed through the funding of the Combating Autism Re-Authorization Act of 2011. And where would the funds for all the services that I outline would come? Good question! According to an article on the website for the nonprofit, Autism Speaks, there are cuts that are scheduled in January of 2013, and these cuts include services for autism. And, according to the last paragraph of this recent article, $238 million were set aside for autism initiatives. It is unclear what these autism projects were meant to do, and they expired in September 30, 2012, probably because of the Election. In this petition, I call for the re-newal of these expired funds and then I call for these same $238 million to be re-allocated to the services and programs for adults with autism that have been calling from the creation of my petition (http://autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research). The point of the article was deep concern about upcoming cuts, but I discovered that there are $238 million that, taken together with the $231 million called for in the Combating Autism Re-Authorization Act, means that $469 million do ALREADY EXIST for autism! My petition calls for these existing funds to be re-newed, appropriated and then re-allocated to include the services for adults with autism which I have called for from the beginning.

Yes, I know that, as I write this, our U.S. President is into the second year of his second term. We do know, at this point, who is occupying the White House for the next two or so years and we do know what the current Congress is and who are filling many sets which were, not long ago, "up for grabs." My signature goal was not be reached by the Election and I know that President Obama and a new Congress will be the ones who will need to re-new, appropriate and then re-allocate the EXISTING funds mentioned in my petition text, to improve life for ALL people with autism, of all ages, at all levels of function, diagnosed and undiagnosed. Yes, now there are many in Washington and those who aspire to be in power, who want to make hurtful cuts to EXISTING programs and services across-the-board and autism is only one target of these proposed cuts. And I know that there are controversies over proposed changes in the DSM-5 and this includes the autism diagnosis. However, even with these realities and challenges, we owe it all people with autism and to ourselves, as a society, to try. Autism affects all of us and when a people group remains unwelcome, misunderstood, and underserved, this affects us all.

Months ago, as I wrote this, many in the autism community and myself have been reeling from the things that many said in that one afternoon's Congressional Autism Hearings. In listening to the hearings for three hours, in the background, via C-SPAN 3, I was not only saddened but angry at what our politicians exhibited what could best be called condescending, paternalistic, uninformed and insulting toward persons with autism. I heard references to autism as a "terrible disease and as an "epidemic" that needed to be "curtailed"! Adults with autism were referred to as "burdens to their families and society" but besides a few uch references, nothing else was said about providing these adults with services. I found much of those two hours of hearings almost unbearable to listen to. The third hour hearings were better as it featured autism nonprofit CEOs but the attitudes some of them exhibited were offensive to me. For example, one CEO called for services to "make autistic adults productive so that they will not be burdens on society." Two CEO's of self-advocacy nonprofits, Ari Ne'man and Micheal John Carley, spoke and in my humble opinion, their testimones were by far the ones that made the most sense as they were from a self-advocacy perspective and from two CEOs diagnosed on the autism spectrum themselves and which they have made public.

Though there were two "autistic voices" at these hearings, which is great progress, please bear in mind that Michael John Carley and Ari Ne'man are among "the lucky ones" as they both are the first to tell you. Most autistic adults, whatever their level of function, do not know the quality of life that these two men know, they may need services that these two men do not need and many struggle with unemployement, secondary emotional problems, family crises, divorce and even worse, even incarceration or homelessness. I know that many people, in AND out of the autism community, are calling for funds to focus on research and "finding causes and the cure." Some of them, with more resources and bigger "voices" than mine, are lobbying Congress for this purpose. I realize that research has its own valid place and is needed to find better ways to diagnose autism and to provide effective services for autistic people. But my petition, on Change.org and at SignOn.org, focuses on comprehensive services for all underserved persons with autism, whatever their age or ability to pay. These hearings only underscore the need for enthusiastic support for a petition like mine that calls for such coverage; the outcome of yesterday's hearings is most uncertain and unless you are okay with autism funds to go mostly for research and early intervention (fine as these are), active and ongoing circulation of my petition on both Change.org and on SignOn.org, is wise. I repeat, you can sign this petition at both sites as neither has any connection with the other.

We all have a vested interest in supporting this because, at any time, anyone in our families or lives) can receive a diagnosis of an Autism Spectrum Disorder or self-diagnose based on life experiences. In fact, because not all people with ASD's disclose their condition, it's safe to assume that almost all of us are affected by autism.

My petition can be found at the Change.org site: http://tiny.cc/mrsahw. I shortened this link to make it much easier to remember and to share than the original Change.org URL link is. My hope is that, once you have signed this petition, you will share it in email messages, send it or post it on Facebook, tweet it, share it through real-time online chats, and through any other social network at your disposal. And do not leave out the traditional word-of-mouth.

My petition can now be found at the SignOn.org site: http://tiny.cc/vq5ztw. Like at Change.org, I shortened the petition at SignOn.org to make that URL easier to remember and to share with others. My hope is that once you have signed the petition at SignOn.org, you will use this shortened URL to share it at Twitter, through Instant messaging, emails, Facebook and through any other social networks that you have access to. And do not leave out the good old-fashioned word-of-mouth.

CaringEnoughToMakeADifference You can find my petition on a widget at this site, which is under construction, and it can be signed there. There are also share options for this widget and my hope is that you will share this site, especially with those in your life who do not use social networks.

Autism Affects Us All: Please Sign & Keep Sharing The Petition If you are a Facebook user, I recommend that you visit this page, "like" it (so its contents will stream into your Newsfeed), and you will find that my petition should be easily found and shared through this page. You can sign my autism petition at Change.org. Click here. You can sign my autism petition at SignOn.org. Click here.

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.
    
    

    

Autism Affects Us All: You Can Support The Petition For Autism Services

This week, when I was scrolling through my Facebook Newsfeed, a post streamed through. It stated, "I am going to defriend anyone in my social network who has anything to do with autism." Puzzled, hurt and rather angry, several people and I posted in the comments area, "Why?" Later, the person curtly responded, "I do not have to answer your question." Minutes later, a person in my network who is closely associated with autism, posted graciously, "You can keep me. I will not force any opinions." This all got me thinking. I wonder if this person who posted about wanting to remove the profiles of all those linked with autism has seen so much of the bullying and encountered the infighting and factions that are rampant in the autism community. I wonder. Certainly there are many in my network who have never shown any form of association with autism. I know that ignorance is the main reason people hold bad attitudes about autism. But another reason, I daresay, is because of the factions and bullying in the autism community. And I know that our US Congress, who are, after all, from us, also hold poor attitudes. We all know that autism services are desperately needed by underserved people of all ages who do not have high incomes or proper insurance. Most supporters of this community also know this. Autism Speaks has launched an autism petition on their own platform, which got hundreds of thousands of signatures. I do not see that it has gotten Congressional or Presidential attention or has made any difference. Another national autism nonprofit has launched an autism petition on Causes. I don't see that it has made any difference. I wonder if it is because of the federal budget and I'm sure that has much to do with Congress's failure to do anything about funding autism services.

There is my petition, which as I write this, seems to have stalled as far as gathering signatures is concerned. Though this saddens me somewhat, there are explanations. First of all, the plain ignorance that is rampant still. The bullying and factions in the autism community itself. People's getting turned off by what often goes on in this community. I know people have their own reasons for not signing which I may never know. A few have said simply, "I don't sign petitions," and a couple were people in the autism community themselves. I know of people who have told me, frankly, "I do not care about causes." I am sure a person or more refuses to sign simply because of some personal dislike for me. I have no control over other's attitudes, perceptions or behavior. But I do have control over my presentation to ensure that my petition is clear in its mission, which is appealing to the US government to fund autism services in all 50 states, so all who need them can access them. I need to make sure it is easy to access, which is why I have set up a Facebook page for it and create occasional Facebook "events" for its easy sharing. This is why I have a website with the petition on a widget there, so people can sign there without needing a Facebook account to do so. However, Change.org had removed the widget option so my petition is gone from my website and now I have to figure out what to do to get it back on that site. Currently, I'm using my upcoming June 29 birthday as a platform to get support for the petition in the form of "My Birthday Wish: Please Post This On Your Own Timelines."

     We all know that regularly updating your materials, whether you are talking about a website, a Facebook page, a talk show, a crime or a missing persons case, or anything you work on, is crucial and adds greatly to one's credibility. One cannot expect a loyal following if one does not work to keep these supporters "in the loop" about what one does. And so I have applied this not only to my Facebook materials but also to my Change.org petition for autism, to be more inclusive and to spell out to supporters, would-be supporters and to our government, exactly what I would like this petition to do and the sources of the funds which I am requesting. For, when I created it, I was aware that many people would, rightfully, be wondering, "Where are the funds going to come from? Do they even exist? And if so, how would such programs be implemented? And what about services for children and teens that are in danger of being cut in the name of "balancing the budget"? My hope is to go a long way toward answering these questions in this blog. I believe that you will be more motivated to support the petition.

     First of all, where will all the funds I call for come from? They must come from somewhere. First of all, it has been brought to my attention that fund had been set aside for services for autism, and, to this day, this legislation for autism has not yet been fully funded. Let me provide some history, according to Wikipedia. On December 19, 2006, President George W. Bush signed into law the Combating Autism Act of 2006. This bill was meant to provide a package of research services and diagnostic services for children and to detect autism in toddlers, among other services. The funds for these services were never appropriated, though. On September 30, 2011, President Obama added his signature to the Combating Autism Re-Authorization Act of 2011 (H. R. 2005). You can read the text for this, in pdf format, here: http://www.gpo.gov/fdsys/pkg/BILLS-112hr2005ih/pdf/BILLS-112hr2005ih.pdf. There were $231 million that were supposed to be appropriated for different autism efforts. However, even though the Combating Autism Act was re-authorized, to this day, it has not been fully funded, according to Politifact, a website full of "fact-checking" information about politicians and legislation (http://politifact.com/truth-o-meter/promises/obameter/promise/82/fully-fund-the-combating-autism-act-and-federal-au/. Therefore, my petition calls for these $231 million. already set aside for autism, to fully fund, and appropriate, the services that they were meant to fund in the first place. For this reason, my petition has become more inclusive and, because of the unfunded autism legislation, my petition calls for the protection of those services that are me

     We all know that regularly updating your materials, whether you are talking about a website, a Facebook page, a talk show, a crime or a missing persons case, or anything you work on, is crucial and adds greatly to one's credibility. One cannot expect a loyal following if one does not work to keep these supporters "in the loop" about what one does. And so I have applied this not only to my Facebook materials but also to my Change.org petition for autism, to be more inclusive and to spell out to supporters, would-be supporters and to our government, exactly what I would like this petition to do and the sources of the funds which I am requesting. For, when I created it, I was aware that many people would, rightfully, be wondering, "Where are the funds going to come from? Do they even exist? And if so, how would such programs be implemented? And what about services for children and teens that are in danger of being cut in the name of "balancing the budget"? My hope is to go a long way toward answering these questions in this blog. I believe that you will be more motivated to support the petition.

     First of all, where will all the funds I call for come from? They must come from somewhere. First of all, it has been brought to my attention that fund had been set aside for services for autism, and, to this day, this legislation for autism has not yet been fully funded. Let me provide some history, according to Wikipedia. On December 19, 2006, President George W. Bush signed into law the Combating Autism Act of 2006. This bill was meant to provide a package of research services and diagnostic services for children and to detect autism in toddlers, among other services. The funds for thse services were never appropriated, though. On September 30, 2011, President Obama added his signature to the Combating Autism Re-Authorization Act of 2011 (H. R. 2005). You can read the text for this, in pdf format, here: http://www.gpo.gov/fdsys/pkg/BILLS-112hr2005ih/pdf/BILLS-112hr2005ih.pdf. There were $231 million that were supposed to be appropriated for different autism efforts. However, even though the Combating Autism Act was re-authorized, to this day, it has not been fully funded, according to Politifact, a website full of "fact-checking" information about politicians and legislation (http://politifact.com/truth-o-meter/promises/obameter/promise/82/fully-fund-the-combating-autism-act-and-federal-au/. Therefore, my petition calls for these $231 million. already set aside for autism, to fully fund, and appropriate, the services that they were meant to fund in the first place. For this reason, my petition has become more ant to serve autistic people age 21 and under, also. This makes my petition more inclusive and should attract support from many people, including those who young children who are diagnosed with autism and are NOT thinking in terms of them becoming adults. It should also attract more support from many outside the autism community, who still think only of children when they hear the word "autism." For this reason, I have slightly tweaked my petition title from "1,000,000 People for Better lives For Adults With Autism" to "1,000,000 People For Better Lives For All Persons With Autism." This gives all of you who are reading this, even if you have signed this petition (and I thank you for that!) all the more reason and "ammo" to freely circulate this petition, whether by email, Facebook, Twitter, online chat, other social networks and yes, word-of-mouth, through my shortened URL: http://tiny.cc/mrsahw.

     The mission of my mission has not changed one bit and I still call for all those services for adults with autism, 21 and over, who have little or no access to these services. These services simply do not exist or, if they do, they are typically available through private nonprofits and are unaffordable to most adults. Yes, I'm sure there are exceptions. In my petition, I call for funds to be offered to EXISTING services for those with developmental disabilities who serve those with autism. Typically, such services are directed to children, teens and maybe young adults, to age 21. Sadly, it is like there is no life for any adult with autism who passes the age of 21. Want a diagnosis, if only to find answers about your unusual past? Too bad, because, unless you are fortunate to live in an area where a qualified professional diagnoses adults or have the time and money to go to such a professional, you are basically doomed. You will not know the relief of a diagnosis, a community and possible services. This sad fact also extends to poor and many minority people, children AND adults and I hope that the exclusion of many less-fortunate children can be addressed through the funding of the Combating Autism Re-Authorization Act of 2011. And where would the funds for all the services that I outline would come? Good question! According to an article on the website for the nonprofit, Autism Speaks, there are cuts that are scheduled in January of 2013, and these cuts include services for autism. And, according to the last paragraph of this recent article, $238 million were set aside for autism initiatives. It is unclear what these autism projects were meant to do, and they expired in September 30, 2012, probably because of the Election. In this petition, I call for the re-newal of these expired funds and then I call for these same $238 million to be re-allocated to the services and programs for adults with autism that have been calling from the creation of my petition (http://autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research). The point of the article was deep concern about upcoming cuts, but I discovered that there are $238 million that, taken together with the $231 million called for in the Combating Autism Re-Authorization Act, means that $469 million do ALREADY EXIST for autism! My petition calls for these existing funds to be re-newed, appropriated and then re-allocated to include the services for adults with autism which I have called for from the beginning.

I have also launched this same petition on SignOn.org, a few months ago. I thought maybe this may be a better platform for the petition than Change.org, though I'm unsure. Even if you are one who has signed the petition at Change.org, you can also sign it at SignOn.org, right here. On SignOn, you need to be in the US and you must be at least age 18 to add your own signatures there. However, with my independent pages and tweets, anyone can pass this petition on, even if you cannot sign it. At SignOn.org, the petition is found at my shortened link: http://tiny.cc/vq5ztw. I shortened it to make it easy to remember and to make it easy to email, tweet and even share word of mouth. Your support in any form is appreciated!

     Yes, I know that, as I write this, the US President Obama is well into his second term.  Congress has been embroiled in budget gridlock and it has not been fully resolved. Many who did not vote for the US President are still reeling from his second Election. I have no way when my desired signature will be reached but it cannot be done by me alone! One person can do very little; it takes many, many people to make a difference and to sway a government to action on matters we care about. I know that, when that happens, the then-sitting President and the then-existing Congress will be the ones who will need to re-new, appropriate and then re-allocate the EXISTING funds mentioned in my petition text, to improve life for ALL people with autism, of all ages, at all levels of function, diagnosed and undiagnosed. Yes, now there are many in Washington and those who had and who still may desire to be in power, who want to make hurtful cuts to EXISTING programs and services across-the-board and autism is only one target of these proposed cuts. And I know that there are controversies over the now-released and published changes in the DSM-5 and this includes the autism diagnosis. However, even with these realities and challenges, we owe it all people with autism and to ourselves, as a society, to try. Autism affects all of us and when a people group remains unwelcome, misunderstood, and underserved, this affects us all.

My petition can be found at the Change.org site and can be found right here. I shortened this link to make it much easier to remember and to share than the original Change.org URL link is. You can also find it here: http://tiny.cc/vq5ztw, on this platform, SignOn. My hope is that, once you have signed this petition, you will share it in email messages, send it or post it on Facebook, tweet it, share it through real-time online chats, and through any other social network at your disposal. And do not leave out the tradional word-of-mouth.

CaringEnoughToMakeADifference You could find my petition on a widget at this site, which is under construction, and it can be signed there. The widget is now gone but plans are underway to get the petition there in another form. There are other, equally important features on this site.

Autism Affects Us All: Please Sign & Keep Sharing the Petition If you are a Facebook user, I recommend that you visit this page, "like" it (so its contents will stream into your Newsfeed), and you will find that my petition should be easily found and shared through this page.