Saving the Autism Diagnosis

          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 Though I was withdrawn, I was grouped with mostly aggressive peers who were angry at the world.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.
         

Autism: What Is In A Word

          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.