Many years ago, children and adults who would have been diagnosed with "emotional disturbances," "mental illnesses," "mental retardation," "personality disorders," or some other unsavory label, or who were just written off as plain weird, are now being diagnosed with "Asperger's Syndrome," (ASD), "Pervasive Development Disorder-Not Otherwise Specified" (PDD-NOS), or "High-Functioning Autism" (HFA). This chance in diagnosis (dx) has meant the difference between success and failure for so many children, teens and young adults, who, like my own daughter, have been able, because of such an autism dx, able to succeed with supports that were unavailable to those of my own (and earlier generations) who often experienced failure and all the baggage that comes with it. A whole new generation have come to see their differences as a result of different wiring and that while they have very real challenges, that they also have very real potential. Where the earlier model of special education was one of focusing on deficits and defining students by their disabilities, the current model is one of teaching based on students' stengths and helping them to overcome their weaknesses without defining students by these weaknesses.
But currently, the American Psychiatric Association (APA) want to change that; for years they have been working on a new DSM-V that would revise the criteria for obtaining an autism dx. Only recently has the APA made their proposed changes public. Therefore, those in the autism community are now up in arms because many of us are very much concerned about the possible fallout of this revised DSM-V. Why does this matter so much to so many of us? many of you may wonder. What is the fuss all about? Let me tell you what is behind our deep concern.
The official autism spectrum dx of a high-functioning sub-type of autism matters because many children, teens and young adults who are dxed with a high-functioning autism sub-type, would likely lose funded services and supports as well as legal protections, especially those under the Americans with Disabilities Act (ADA). Many of those in the generation since after 1990, when the autism spectrum began to be used as an official dx, have experienced access to support services, opportunities, legal protections under the ADA and success. My daughter is among those in this generation, being on her school honor roll this past semester. And in addition, many children, teens and young adults whose supports, benefits and legal protects are based on their dx, would suffer substantial loss. Talk about sliding backwards in time! Future generations would, again, have to grow up as I did and as so many others have had to grow up, being misunderstood, bullied, shamed and belittled into believing their challenges are due to stupidity, badness, or being damaged and broken, rather than because of different wiring. Finally, the proposed revisions in the criteria for the autism dx would be a slap in the face of many of us adults who were "born too early" to grow up with an official dx or to even have a concept of it; because of the loss of the dx we would lose our explanation and answers about our often puzzling, painful pasts.
Now I'm aware that many people do not even believe in the concept of the autism spectrum, ASD, HFA or PDD-NOS. Some believe that that the autism epidemic is actually a dx epidemic or the latest fad in "pop psychology" that will die out and be forgotten. I know that many people, whose thinking runs along the lines of "pulling yourself up by your own bootstraps" or who are part of the "cowboy culture" may welcome the tightening in the eligibility to get an autism dx. "You are looking for an autism dx to hide behind to find excuses for the way you are," many adults who are fortunate enough to have access to an autism dx screening, may be told. "You are looking for an autism dx for your child so you can excuse your bad parenting," many parents who fight for an autism dx for their child, may often be told. And indeed, there are those successful adults on the spectrum who enjoy success and fulfillment in their personal lives and careers and for them, seeking a dx of autism may not be in their best interests because of the social stigma of the dx. But for my purposes for this blog, let me share my own story to show you that,m whether diagnosed or not, the challenges of ASD/HFA are real and can be painful or intense.
I grew up in the 1960's and the 1970's, well before the autism spectrum was conceived. From the beginning, it was clear that I was different. I behaved differently, moved differently and learned differently. I had tantrums, cried nonstop, fixated on certain objects, and didn't relate to people. And I began to have seizures; as a child, I was diagnosed with epilepsy. According to my records, I had "behaved so badly" that my mom, stressed-out, took me to a professional, who pinned on me the dx of "obsessive-compulsive neurosis" and "emotional disturbances" and I carried those labels, among others, for many years. None of such labels provided me any legal protections or support services beyond inappropriate psychiatric services and equally inappropriate special education placements. My childhood is a blur of memories of adults spanking me, slapping me, yelling at me, even at times putting soap in my mouth or locking me in closets to "teach" me to "stop being bad and spoiled." As a younger child, I was placed with "the real disabled children" and was told that I was among them only because I did not "act like other kids" and "we don't know what to do with you." Also, an official dx would have much reduced stress for my parents, especially my mom, who really loved me but who did not know how to help me become successful, happy or confident. In later childhood and especially in my teens, I suffered vicious bullying for being "different." My peers called me "crippled," "klutz," "retard," "ugly," "stupid," and things that are not fit to be printed. Also, I often suffered physicial bullying. Though adults were clueless about the nature of my challenges, my peers did not need an official dx to identify me as different and to respond to this knowledge by theire bullying. I found myself in and out of special education; after a year of vicious bullying, I found myself in special education for the remainder of my school career. Today, I carry the scars from these years and though my challenges are modified and controlled, they are still there; they affect how I relate to people and how they see me. None of this is a figment of my imagination. It is real. I owe my current self-understanding and hope for the future to my daughter and to her official autism dx, as it applies to my own life.
The American Psychiatric Association wants to revise the DSM-5 criteria for the autism diagnosis, admittedly, to cut costs. Fot to provide services, benefits and legal protects costs money; but no school district or government is going to want to spend anything on a child or adult without any official dx. Folks, even if you are not in the autism community because you aren't aware of people that you know who are autistic, think again. Most of you will likely know people, personally and/or professionally who are on the spectrum, whether dxed or not, but who will not disclose their dx to you. Why? Because of the social stigma of autism, they fear misunderstanding, rejection or discrimination. And this proposed revision in the DSM-5 would only make things worse. And then there are those of you who may wonder if your loved one is on the spectrum or want to obtain autism screening for him or her; a few of you may want such an autism screening for yourself because of your own pasts; do you want things to be made harder because of tightened criteria for autism? The dx of autism is stigmatizing, but not as stigmatizing as many other labels that were used in the past. This autism dx empowers many parents to effectively help their ASD/HFA children grow up to become effective, confident, responsible, successful people with many support services, legal protections and guidance. The autism dx empowers adults fortunate enough to obtain it, to to understand themselves and to deal with their challenges and to gain the motivation and incentive to better their lives and to reach out to other people who share the same dx. The APA's concern to cut costs is understandable; they have expressed regret for "unfortunate consequences" of their decisions and that much of our concerns are unfounded. But should $$$ come before the lives, happiness and well-being of people and their futures?
I will provide for you links to a few petitions where you can read the petition letters to the APA to educate yourselves about this if you need to and then to sign the petitions and to share them; I'll also provide links to autism resources.
No, autism is not just a word and in this case, talk is not cheap.
http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5
This petition has been put together by GRASP, an official nonprofit for teens and adults on the autism spectrum; please read the petition letter to the APA. Then sign this petition; you can increase your impact by adding your thoughts and feelings about autism and any experiences you have had with it. Then sign it and share it!
http://www.change.org/petitions/stop-the-change-in-definition-of-autism-for-those-on-the-spectrum
This is another petition that aims to collect 1,000,000 signatures. Please read the petition letter, sign the petition and feel free to increase your impact by sharing your own thoughts and feelings and, if applicable, your experience with autism.
http://www.grasp.org/ This is the official nonprofit for teens and adults on the spectrum of autism.
http://autismabout.com/od/whatisautism/tp/topten.htm
This is a comprehensive resource containing links that educate the public about all matters in the field of autism. It contains tabs leading to other pages.
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