When I was growing up in the 1960's and 1970's, the autism spectrum concept did not exist. When I was born to my 17-year-old mother, I showed signs of difference almost from birth, symptoms that she could not make sense of and felt unable to cope with. I cried nonstop, behaved "very badly," according to juvenile records, experienced sporadic seizures, showed "distance in human relationships, according to juvenile records and walked differently. So mom took me to professionals, whom I also "stumped" and my case was "over their heads." I was diagnosed with nebulous "emotional problems," or equally vague "behavior problems," with mild cerebral palsy, and epilepsy. But clinicians did not know what to make of this mix of differences without the benefit of autism spectrum disorders and so I was in and out (mostly in) special schools and a couple residental settings during my childhood and teens. Though I was withdrawn, I was grouped with mostly aggressive peers who were angry at the world. Mom had no idea of how to help me and being continually blamed for my problems did nothing for me. I suffered much bullying because of these differences and the focus seemed to be on me as "asking for it" because I did not "act like the other kids." Many adults disliked me and did not hide it. At one point, when I was age 17, a bunch of medical residents in a teaching hospital were gathered together to "check me out" and to see if they could figure out my case. Of course, that was not possible with the diagnostic resources available at that time! And so I grew up with a really bad self-image, a shame-based self-identity, fears, a major distrust of people, seeing that they largely have not or would not, understand me (or even try) or accept me as I was. Growing up, I heard, over and over, "Get over your shyness" and "You need to conform to how other people act." In adulthood, I did not exactly "lose my way" but I did not "find my way" either. And many in my generation and prior to that, also grew up with undiagnosed sub-types of autism and could have told many similar stories of being misunderstool, excluded, of failure, isolation and even of homelessness, lives of crime born of desperation, and incarceration.
The American Psychiatric Association (APA) wants to once again roll back the diagnostic criteria in their DSM-5 that would, once again, remove these sub-types of autism, like Asperger's Syndrome (ASD) and Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS) that has the potential of hurting many people, children and adults now and also future generations. This could mean going back in time to when I was growing up when we were set up for failure through inappropriate or no services.
I'm sure that by now, most people in my social networks, who log in on a fairly regular basis and who have not blocked my posts from appearing on their Facebook homepages, have been seeing me frequently circulating a couple petitions, addressed to the APA, urging them to not change or narrow the criteria needed to obtain an autism diagnosis. As a Member of Global and Regional Asperger's Syndrome Partnership (GRASP), Facebook users may often have seen my circulation of the GRASP petitition to the APA, for that purpose. In case anyone is interested in what this is all about, the GRASP petition can be found at this link http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5.
If you've been seeing these posts and related posts but your life experiences and agendas for using social networks do not give you the incentive to learn about autism and its issues, you may wonder, "What is the fuss all about anyway?" or "What does this have to do with me?" It is because you may know people on the spectrum who have never been diagnosed or who, because if the stigma of this label, have not "come out of the closet" about this. They manage their challenges so well that "coming out" does not feel like a need. It may not even be in their best interest to "come out of the closet," given the ignorance and prejudice that still exist.
Autism is a neurological condition, not a mental illness or a disease. It affects the way a person sees and relates to others, himself and to the world. It means a diiferent way of thinking. It is a developmental condition that always shows up somewhere in the first three years of life. And because autism is a neurological diorder, it often doesn't stand alone but often comes with other neurological conditions such as learning disabilities, sensory processing disorders, epilepsy, Down's Syndrome, Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD), and others. For the past 12 or so years, the APA have included Asperger's Syndrome and PDD-NOS as part of the autism spectrum and as sub-types considered and treated as high-functioning forms of autism. Obtaining this diagnosis has been especially valuable to all of the children, teens and young (under 25) adults who have been fortunate enough to obtain this diagnosis and to receive services, benefits and legal protections under the Americans with Disabilities Act (ADA). They have been able to get accommodations at school, on the job and in public settings, that they could not get without their diagnosis or with a psychiatric or mental health diagnosis. Also, autism is a MUCH "nicer" word and less of a stigma, than labels like "emotionally disturbed," "behaviorally disordered" and most mental health labels and inspires more empathy. But the APA want to remove ASD and PDD-NOS from its DSM-5 and while autism would still be something of a spectrum, the narrowed and tightened criteria mean that many people may be eliminated from this spectrum, lose their diagnosis and be hurt by these changes. Fully two-thirds of people with ASD and 85 percent of those with PDD-NOS are projected to be eliminated from the spectrum. This means that many parents seeking an autism screening for their children and people wanting screening for themselves, would find it harder to be diagnosed under the new criteria. The APA claim that their revisions would simplify the diagnostic process by uniting all autism sub-types under one unbrella. This is also a major cost-cutter as states would be spared the costs of having to pay for many autism services and benefits. For who wants to spend money on someone without any diagnosis? While, indeed, in these lean times where resources are being spread thin, we need to be cutting costs where we can, should this be done on the backs of individuals and families who need services and benefits?
Why does the proposed changes bother me and so many others? For the most part, the only way some of us adults can make sense of painful pasts and unexplained differences in thinking and behavior, are referring to the sub-types of autism to explain ourselves to ourselves. It was only after my daughter, before her third birthday, received her PDD-NOS diagnosis and others suggested (not to me but to others ABOUT me) that I may be on the spectrum, that I finally had a name for my unexplained differences. Yes, I can't get an autism screening as that isn't done for adults over 25, so self-diagnosis is the only tool available to me. Because of her early diagnosis, my daughter has been able to get early childhood intervention and numerous support services, benefits and legal protections that have been based on her diagnosis. Without her diagnosis and all that has come with it, I doubt that she would be as well-adjusted, happy and successful as she is today. I'm sure that many, many other families with officially diagnosed children or loved ones would say that same thing. But if my daughter and so many others would lose their diagnoses, they would also lose the services, benefits and legal protections that have come their way because of their diagnoses. This would, once again, set up many for failure.
When people are set up to fail, society often pays the price just as it has been paying the price for undiagnosed people for many years. So many of these undiagnosed people have had to endure special education and residential school placements as children and have been fast-tracked into lives of dependency of government assistance, residential placements, poverty, homelessness, crime, and incarceration. All of this costs tax dollars to the public. This is why we should concerned about undiagnosed people. Without services, benefits and legal protections but with challenges that they can't handle on their own, many people will again have no options and they will become desperate. And we know that desperate people do desperate things.
I know that many families with children or loved ones with severe, classic autism may not be concerned about the proposed APA changes, thinking this won't affect their children. Such families may understandably resent higher-functioning autistic children and adults and see them as taking away resources from their children or loved ones. I know that there is "bad blood" between many adults with Asperger's Syndrome and families with severely autistic children. But what these families may not realize is that the proposed APA changes may also affect their children's or loved one's diagnoses and they may lose their diagnosis of "classic" autism.
I know that there are those in the "pull yourself up by the bootstraps" camp who don't believe in the autism spectrum and who would welcome these proposed changes, whether they know about ASD and PDD-NOS or not. I know about the school of thought that holds that parents who seek screening for their children, are looking for "smoke and mirrors" excuses for poor parenting, and that adults seeking screening for themselves, want a word to hide behind to escape responsibility for their actions. Well, the truth is that what we seek are answers and closure as well as understanding and to be empowered to relate to people with confidence and explain our differences. However, I know that many people show no interest in wanting to learn about autism, ASD and PDD-NOS and are probably the ones who need to read this blog more than anyone. But I know that unless I'm wrong, such people will not read this. Sad.
Whatever happens with the prosposed APA changes that are supposed to become final at the end of this year, autism is not going to go away. This holds true even if many with it will be called something else.
And if you want to help and show your support, I will provide the petition link once again and you need to read the petition text, sign the petition and take down the URL link to it so you can forward it so others can sign it. Your support is much appreciated; and everyone in the autism community, families, individuald and those who work in the autism field (whose livelihoods could be affected), all have a vested interest in getting involved.
http://www.autism-society.org/
This website is for a nonprofit that works for families and individuals with autism through advocacy and awareness. If you need to learn about autism and want to educate yourself, this is a great site to visit and at the "About Autism" tab is where you can learn the basics about autism.
http://www.grasp.org/
This website is for a nonprofit that works to improve life teens and adults with autism through advocacy and awareness. They are the ones with the petition that I'm about to share.
http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5.
This is the GRASP petition that is addressed to the American Psychiatric Association, urging them to not narrow or tighten their criteria to obtain an autism diagnosis. Please visit this site, read the petition text, sign it and use the URL link to forward it.
Saturday, February 25, 2012
Wednesday, February 22, 2012
Making A Difference With Your Clicks
You may have heard about them in your online time. You may not think they don't really help. You may not think that they are legitimate. You may have never heard of them. I'm talking about click-to-give sites where you click to engage in online activities and a specified amount of funds are released on your behalf and are donated to those in need. Yes, I'm sure that they are sites that are poor in quality or do not do what they claim. I'm sharing with you click-to-give sites where I click daily or regularly, am well-acquainted with and am convinced are legitimate, really seeking to help the needy. Normally, unless my computer is acting up, visiting these sites and clicking in the designated areas takes just minutes out of my day.
Want a site where your clicks help feed starving or hungry children in the US as well as children in other parts of the world? There is a site for you. It's called World Legacy. At this site, you click two designated buttons, one to fight hunger worldwide and the other to fight hunger in the US. There is a sponsor who pays for your clicks to fight global hunger and another sponsor who pays for your clicks to fight US hunger. Though you can click both buttons all you want, only one click per person is counted and actually releases funds. Yes, it's true that on this site one click per day adds up to just pennies (1/4 cup of food per click to fight global hunger is a paltry amount). But if many people click daily, these clicks can add up fast. On this site, you can find a chart where there is a breakdown of how, collectively, many people's clicks help combat hunger both in the US and globally. All sponsor money is said to go directly to fight hunger. So if you ever feel that you don't have "two nickels to rub together" and have nothing to give, you can make a difference at World Legacy. Sharing this site with others so they can do likewise, increases your impact. You can visit World Legacy right here at:
http://www.worldlegacy.org/index.htm.
Want a site where you can help save children's lives? There is a site for that. It's called the Tarahumara Children's Hospital Fund. The clicks done at this site are calculated monthly. Your clicks at this site actually help fund a children's hospital and keeps it open so health care providers can keep serving destitute children. This site provides much detail in their stories and photos of all that is being done to meet the various needs of the children served and how their lives are not only being saved but are being changed. Daily, you click on a designated button and you will see a count of clicks as they add up in real-time each month. After you click, you are given a link where you can visit a page where you can view a chart that gives a breakdown of how everyone's collective clicks help keep the Tarahumara Children"s Hospital open and the the hours of hospital care that everyone's clicks have funded that month. Yes, the clicks you make at this site supplement the work done for the children served through actual public donations. Moved to give of your financial resources to increase your impact? Your actual donations are warmly welcome where there is a donation button. But to click daily, no donated is required. To visit this site, go to http://www.tchforegon.org/.
Want a site where your clicks help different charities that are trusted and help causes that most of us care about? There's a a site for that. It's simply called Click-To-Give, Give To Charity For Free! At this site you click once to help 6 different charities, adding up to 6 clicks per day. These clicks benefit abused animals, abused children, poor children, the homeless, children with cancer, and sponsors individual needy children. Your daily clicks to each charity may add up to pennies per day, but if many people click for each charity daily, the clicks add up and much good can be done. At the "Follow Our Progress" tab on the left of the site, you can see that many thousands of clicks for charity were done the previous month. There are six designated click buttons for each charity. Again, though you can click each button over and over, only one click at each of the 6 buttons per day actually releases funds for the designated nonprofits. And though I have never taken advantage of it, you can "earn points" and be able to "claim rewards" of free items purchased from the charities involved; there is a "rewards store" for this. As you click each button for each charity, you are assured that 100 percent of sponsor money goes directly to the designated charities. To track your individual progress on this site and to "earn points" and be able to "claim prizes," you need to set up an account with this site. But it is worth it in that you are encouraged as you can see how, over time, your clicks are actually helping multiple causes and trusted nonprofits. I encourage you to visit this site; do it at: http://www.clicktogive.com?ref=42267.
Want to check out a site for a cause that uses multiple social networks to empower you to get involved and which is expanding in scope? Join My Village (JMV) is for you. JMV is an iniative partnership between General Mills, Merck and the CARE organization. General Mills and Merck have committed to donating money to CARE but this is done only through your clicks and through money donations which they match with their money. All these $$$ go to CARE so the nonprofit can better serve girls and women in Malawi, one of the poorest areas in the world and in Africa. JMV helps girls and women through giving them educational opportunities, empowering them to break the cycle of deep poverty. And this year, JMV has expanded to serve girls and women in India, also through the means of educational opportunties. JMV focuses on girls and women because it's females who, by far, are denied educational opportunties and because when they do receive such opportunites, the payoff is much greater because educated women bear fewer children, are better wives and mothers and are able to take better care of their families. And they increase their earning power and are in a far better position, when educated, to support their families and serve society. JMV runs a Facebook page where every interaction with it releases funds to CARE for girls and women; this page is linked to their site whose link I will soon be sharing. They run a Facebook cause which is linked to the page. And they run a website which is also interactive and where funds are released every time you click to perform online activities there or share these activities with those in your network. Your clicks are worth $1-$3 a click. When you enter this site, you can see that, over time, well over $1 million have been donated to JMV. On the Facebook page, the cause site and on the JMV website, you can view different photoes, videos, slideshows and stories. JMV shows how everyone's daily clicks and matched donations actually help these girls and women, where the $$$ are going and how these girls and women's lives are being changed for the better. Not content to just click but also feel moved to share your financial resources" On their site, JMV provide a donation button where your donations are warmly welcome but not required to click and click over and over. You can visit this updated, revamped website at: http://www.joinmyvillage.com/.
Want to make a difference for 8 different, popular causes each day? There is a network of 8 linked, click-to-give sites that are for you. These click-to-give sites are called the Greater Good Network sites. There are 8 different sites where you can help feed hungry children, help feed rescued animals, help provide free mammograms for needy women, help feed homeless veterans, help provide therapy for autistic children, help fund health care for needy children, help provide books for needy children, and help preserve rainforests. The 8 sites are all linked so that you can click the 8 designated buttons in less than two minutes per day, assuming your computer is running at full capacity. No matter which site you visit, you will see 8 tabs at the top of each site where you can see the sites as linked and which make clicking daily both easy and efficient. As you click the designated tabs 8 times, each time you are assured that 100 percent of sponsor money goes to each cause. You can click over and over on each tab, but only one click on each designated click button per day will actually release funds for each of the 8 causes. On each site, you can read stories and see photos about how needy people are being helped in so many ways and how your clicks make a difference. Want to do more than to just click? There is an online, comprehensive store, accessible no matter what site you are visiting. All funds from purchases made through online shopping made on this site go to the designated causes, so you can shop online here and make a difference! Also, at each site you will find many online petitions that are relevant to each cause. So even if you have no money, you can give your time at these sites and make a difference in many different ways! Here is where you can visit these sites: http://www.thehungersite.com, http://www.thebreastcancersite.com, http://www.theanimalrescuesite.com, http://www.theveteranssite.com, http://www.theautismsite.com,
http://www.thechildhealthsite.com, http://www.theliteracysite.com, http://www.therainforestsite.com.
I don't want to give the wrong message here, that online, free (to you) clicking at certain websites replaces the offline serving, caring and sharing with those in need or the giving of one's material resources. I just want to show that you can do great good with your clicks and that if you are in an life situation where you feel that your ability to serve and give to others is limited, there are still options. And I know that there are some who will never trust click-to-give sites and are paranoid about what they click. This is understandable in light of the scams and viruses that are rampant online. If you wonder why clicks are limited, for the most part, to one daily click or in other ways limited? This is to prevent computer crashes and abuse and also because sponsors have limited funds for clicks. I know a number of you already click on some of these sites and good for you! I hope that because of this blog more people will be steered to what I feel are legitimate, quality click-to-give sites.
Want a site where your clicks help feed starving or hungry children in the US as well as children in other parts of the world? There is a site for you. It's called World Legacy. At this site, you click two designated buttons, one to fight hunger worldwide and the other to fight hunger in the US. There is a sponsor who pays for your clicks to fight global hunger and another sponsor who pays for your clicks to fight US hunger. Though you can click both buttons all you want, only one click per person is counted and actually releases funds. Yes, it's true that on this site one click per day adds up to just pennies (1/4 cup of food per click to fight global hunger is a paltry amount). But if many people click daily, these clicks can add up fast. On this site, you can find a chart where there is a breakdown of how, collectively, many people's clicks help combat hunger both in the US and globally. All sponsor money is said to go directly to fight hunger. So if you ever feel that you don't have "two nickels to rub together" and have nothing to give, you can make a difference at World Legacy. Sharing this site with others so they can do likewise, increases your impact. You can visit World Legacy right here at:
http://www.worldlegacy.org/index.htm.
Want a site where you can help save children's lives? There is a site for that. It's called the Tarahumara Children's Hospital Fund. The clicks done at this site are calculated monthly. Your clicks at this site actually help fund a children's hospital and keeps it open so health care providers can keep serving destitute children. This site provides much detail in their stories and photos of all that is being done to meet the various needs of the children served and how their lives are not only being saved but are being changed. Daily, you click on a designated button and you will see a count of clicks as they add up in real-time each month. After you click, you are given a link where you can visit a page where you can view a chart that gives a breakdown of how everyone's collective clicks help keep the Tarahumara Children"s Hospital open and the the hours of hospital care that everyone's clicks have funded that month. Yes, the clicks you make at this site supplement the work done for the children served through actual public donations. Moved to give of your financial resources to increase your impact? Your actual donations are warmly welcome where there is a donation button. But to click daily, no donated is required. To visit this site, go to http://www.tchforegon.org/.
Want a site where your clicks help different charities that are trusted and help causes that most of us care about? There's a a site for that. It's simply called Click-To-Give, Give To Charity For Free! At this site you click once to help 6 different charities, adding up to 6 clicks per day. These clicks benefit abused animals, abused children, poor children, the homeless, children with cancer, and sponsors individual needy children. Your daily clicks to each charity may add up to pennies per day, but if many people click for each charity daily, the clicks add up and much good can be done. At the "Follow Our Progress" tab on the left of the site, you can see that many thousands of clicks for charity were done the previous month. There are six designated click buttons for each charity. Again, though you can click each button over and over, only one click at each of the 6 buttons per day actually releases funds for the designated nonprofits. And though I have never taken advantage of it, you can "earn points" and be able to "claim rewards" of free items purchased from the charities involved; there is a "rewards store" for this. As you click each button for each charity, you are assured that 100 percent of sponsor money goes directly to the designated charities. To track your individual progress on this site and to "earn points" and be able to "claim prizes," you need to set up an account with this site. But it is worth it in that you are encouraged as you can see how, over time, your clicks are actually helping multiple causes and trusted nonprofits. I encourage you to visit this site; do it at: http://www.clicktogive.com?ref=42267.
Want to check out a site for a cause that uses multiple social networks to empower you to get involved and which is expanding in scope? Join My Village (JMV) is for you. JMV is an iniative partnership between General Mills, Merck and the CARE organization. General Mills and Merck have committed to donating money to CARE but this is done only through your clicks and through money donations which they match with their money. All these $$$ go to CARE so the nonprofit can better serve girls and women in Malawi, one of the poorest areas in the world and in Africa. JMV helps girls and women through giving them educational opportunities, empowering them to break the cycle of deep poverty. And this year, JMV has expanded to serve girls and women in India, also through the means of educational opportunties. JMV focuses on girls and women because it's females who, by far, are denied educational opportunties and because when they do receive such opportunites, the payoff is much greater because educated women bear fewer children, are better wives and mothers and are able to take better care of their families. And they increase their earning power and are in a far better position, when educated, to support their families and serve society. JMV runs a Facebook page where every interaction with it releases funds to CARE for girls and women; this page is linked to their site whose link I will soon be sharing. They run a Facebook cause which is linked to the page. And they run a website which is also interactive and where funds are released every time you click to perform online activities there or share these activities with those in your network. Your clicks are worth $1-$3 a click. When you enter this site, you can see that, over time, well over $1 million have been donated to JMV. On the Facebook page, the cause site and on the JMV website, you can view different photoes, videos, slideshows and stories. JMV shows how everyone's daily clicks and matched donations actually help these girls and women, where the $$$ are going and how these girls and women's lives are being changed for the better. Not content to just click but also feel moved to share your financial resources" On their site, JMV provide a donation button where your donations are warmly welcome but not required to click and click over and over. You can visit this updated, revamped website at: http://www.joinmyvillage.com/.
Want to make a difference for 8 different, popular causes each day? There is a network of 8 linked, click-to-give sites that are for you. These click-to-give sites are called the Greater Good Network sites. There are 8 different sites where you can help feed hungry children, help feed rescued animals, help provide free mammograms for needy women, help feed homeless veterans, help provide therapy for autistic children, help fund health care for needy children, help provide books for needy children, and help preserve rainforests. The 8 sites are all linked so that you can click the 8 designated buttons in less than two minutes per day, assuming your computer is running at full capacity. No matter which site you visit, you will see 8 tabs at the top of each site where you can see the sites as linked and which make clicking daily both easy and efficient. As you click the designated tabs 8 times, each time you are assured that 100 percent of sponsor money goes to each cause. You can click over and over on each tab, but only one click on each designated click button per day will actually release funds for each of the 8 causes. On each site, you can read stories and see photos about how needy people are being helped in so many ways and how your clicks make a difference. Want to do more than to just click? There is an online, comprehensive store, accessible no matter what site you are visiting. All funds from purchases made through online shopping made on this site go to the designated causes, so you can shop online here and make a difference! Also, at each site you will find many online petitions that are relevant to each cause. So even if you have no money, you can give your time at these sites and make a difference in many different ways! Here is where you can visit these sites: http://www.thehungersite.com, http://www.thebreastcancersite.com, http://www.theanimalrescuesite.com, http://www.theveteranssite.com, http://www.theautismsite.com,
http://www.thechildhealthsite.com, http://www.theliteracysite.com, http://www.therainforestsite.com.
I don't want to give the wrong message here, that online, free (to you) clicking at certain websites replaces the offline serving, caring and sharing with those in need or the giving of one's material resources. I just want to show that you can do great good with your clicks and that if you are in an life situation where you feel that your ability to serve and give to others is limited, there are still options. And I know that there are some who will never trust click-to-give sites and are paranoid about what they click. This is understandable in light of the scams and viruses that are rampant online. If you wonder why clicks are limited, for the most part, to one daily click or in other ways limited? This is to prevent computer crashes and abuse and also because sponsors have limited funds for clicks. I know a number of you already click on some of these sites and good for you! I hope that because of this blog more people will be steered to what I feel are legitimate, quality click-to-give sites.
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