April is Also Autism Awareness Month

          Answers. Resolution. Closure. Validation. Vindication. Justice. We all yearn for these things to be real in our lives. It hurts terribly when these things elude us. A resolved past empowers us to deal with the present with confidence; it motivates us to deal with the difficult, sad, bad and even tragic things that may befall us. The agony of being without resolution is fighting shadows and unseen enemies that we are aware of and experience but that remain a puzzling mystery. Life is full of pain but when this pain does not result in resolution and mysperies continue, the agony intensifies.
          For example, in the years I've spent socially networking with families with missing loved ones, the basis of their nightmares lies not in losing a loved one but in not knowing where that loved one is or what has happened to that loved one. It's the gnawing pain of wondering, wondering, wondering. You don't know, for certain, that your loved one is alive though you desperately hope that is true. You wonder, if they are alive, if they are suffering, are being starved, tortured or enslaved. If your loved one's disappearance is an unexplained one, you wonder how it happened and who is responsible. And if you have an idea what happened but can't confirm it, the craving for justice won't go away. I make no pretense of claiming to identify with this nightmare nor would I wish it to happen to any one. I write these things out of observation of those living this reality and out of empathy.
          However, I know very well the agony of having no answers or resolution to an unexplained past that continues, to this day, to haunt my present but in an entirely different way from families with missing loved ones. I'm talking about the anguish of living with an undiagnosed condition that alters the way I think, see and relate to the world, others and myself and the way the world sees me. I grew up thinking differently, acting differently and and learning differently. Adults, frustrated with me and seeing me merely as a "problem child" in need of a "good whipping," often reacted unkindly to me. When I was a young child, one babysitter would lock me in closets and put soap in my mouth. When my mom took me to kindergarten, at the end of the day the teacher said to her, "You have the worst-behaved child I have ever seen." My mother's ex-husband would spank me and tell her, "What an animal you have raised." Adults would tell me things like, "You're spoiled rotten," "You're bad," "You're lazy," "You are selfish and self-centered," "You don't want to learn," "You won't amount to anything." My peers often bullied me, calling me names and taunting me. One year, their bullying got so vicious and relentless that I was removed from the school in question. As I was for much of my childhood, I was once again placed in special classes and other settings where the curriculum was always watered-down and I remained there for the rest of my school years. I felt deprived of both an education and a childhood and entered adulthood with a shame-based identity and no vision for the future and spells of depression.
          In the course of time, my beautiful, precious daughter was born. As a baby and toddler, she showed the same distance in human relationships and some of my other behaviors. She was offically diagnosed with a sub-type of autism. It was not until then that we knew anything about autism spectrum disorders (ASDs). Prior to this, all our family knew about autism was media coverage of and my encounters with children or adults, without speech or other basic life skills, who had classic, severe autism. This type of autism has been recognized for years, if not understood. The autism spectrum has been around for not much longer than a decade and the American Psychiatric Association (APA), as I already blogged in an earlier post, are planning changes in the autism spectrum criteria that may hurt many in the autism community. From what I understand, those who already are offically diagnosed on the spectrum can keep their diagnoses; the ones who will most likely be affected by this new DSM-5 will be those seeking future autism screenings. My daughter, because of her diagnosis, is experiencing success that I doubt she would have experienced without it. She is high-functioning and is doing well in school and in her studies, especially in math (so unlike me, her mom). She is happy, loved, fun and has much love to give. As for me, it took several years before I figured out that I grew up with an undiagnosed ASD. I hate a mere self-diagnosis but it may be my only tool to get any closure for myself, as I have not been able to find someone to grant me an autism screening.
          And so, as an adult, and not only offline and in-person but online, I continue to experience lots of misunderstandings in my relationships and failed relationships. People continue to react unkindly to me. All this would be easier to take and deal with if I had the benefit of an official diagnosis that could confirm my suspicians and empower me to move forward with peace of mind and confidence. Online, where I have been spending much time supporting other people's causes, I have experienced failed relationships and misunderstandings. I have gone through another such incident this very past week. All this screams for answers, resolution and closure.
          April is commonly know as Child Abuse prevention Month. But did you also know that April is also Autism Awareness Month? For autism, wherever a person falls along the spectrum, is a neurological condition unlike most others. Diagnosed or undiagnosed, it affects the way that we see and relate to the world, ourselves and other people. Autism also affects the way people see us and relate to us. This is the daily reality that my daughter and I, and many others, live with on a daily basis. There are many conditions and diabilities that profoundly affect people emotionally and their circumstances but not in the way that autism and other neurological conditions do. Just recently, a former Facebook friend cut all ties with me, citing my "passive-aggressive ways," my "insistence on my own way in all things" and that "my personality quirks" "turn everyone off."
          If you have few ties to autism, whether through having a loved one on the spectrum, being on the spectrum yourself or through working in the field of autism, you may not see the need to worry about the threat to the autism spectrum diagnosis or why I'm making a big deal of the need for a proper diagnosis for this condition. This matter troubles many of us in the autism community because this can take us back to the days when a lack of a diagnosis meant inappropriate interventions or no support, understanding or services. It can take us back to the time when our differences were seen purely as moral and personality defects and we were ostracized and dismissed. This is unacceptable. And society does not benefit from this either. Undiagnosed people are people with unmet needs. When deep needs are not met, people often tend to be filled with anger and frustration, even rage, and take this out on society. Such people may visit you and your family in forms you may not want. Striking out at a society that does not understand them or welcome them, they may commit heinous or violent cimes that result in missing people or school or workplace shootings. Aside from the moral obligation to care for these individuals, we should worry about this matter because it may fight crime. Even more, it will result in people being empowered to contribute to society and pay taxes.

http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5
This is the petition, started by Global Regional Asperger's Syndrome Partnership (GRASP) which is addressed to the American Psychiatric Association, appealing to them to preserve the current criteria for getting an autism spectrum diagnosis. I urge all of you to sign, even if to simply support autism awareness. Every signature counts!