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