Patriautic's Life Story - In a Nutshell

Existence is Futile

Life dawned for me in the 70’s, when the last of the Apollo astronauts were in training for their upcoming trips to the moon, an age of disco balls, bell bottoms and Beatles’ songs. I was born to Ambrose and Marilyn Currie, maiden name Marilyn Swift. I had a bright and sunny disposition and was curious about everything I could reach from my hands and knees. Even at that age, I knew how to be naughty. Thinking she was looking into a little box, and not at me, I plucked a leaf off of one of her plants that I liked putting in my mouth at the time. She still has that photograph to this day. By two years, I was talking, walking and learning the alphabet.

Then, a few months after my second year, something terrible happened. I became very sick for a long time. My skin became pallid. I grew shadows under my eyes, threw frequent tantrums, and cried for hours every single day. Suddenly, I wasn’t talking, my walking was disoriented, and my ability to read Dr. Seuss vanished. I became a shadow in my own world. Mother took me to a couple of doctors. It was suggested to my mother that she was being overly concerned, that I still fell within developmental norms, and that I would “grow out of it” in a few months. One doctor told her she had a colicky baby, as if flatulence explained it all. Eventually, through an intermediary stage of echolalia, I learned to talk again. I regained my coordination and began to run again, though perhaps a little more prone to run off. I also became a prodigious reader and even wrote a couple “books” on blank drawing pads. Though kind of cute, I honestly can’t read my ill-coordinated four-year-old handwriting.

As I grew older, I became aware of two things. The first thing was that I really enjoyed nature, science, and history. I enjoyed collecting and categorizing lists, learning facts and figures, drawing maps and charts, and exploring every facet of the interests I had (planetary science, earth science, astronomy, insects, trains, American history, and imagining the distant past when dinosaurs lived). The second thing I soon became aware of was that my father was someone, or rather something, to be feared. Sadly, domestic violence doesn’t take a vacation just because a child with a form of Autism or severe learning disability is welcomed into the world. Nor does it stop the typical pattern of escalation with each tantrum over the years. My father was the youngest of eight children and came from a large Catholic family, an alcoholic family, a family that abused and largely neglected him. His demons became my reality.

Also, between Kindergarten and the first grade, my mother had me tested at a medical facility where I was first diagnosed with Pervasive Developmental Delay. I did not present as classically Autistic, and Asperger’s Syndrome was not present in the diagnostic criteria in the 70’s. I did well under my IEP through the second grade. Then, things changed for the worse. Elementary school administrators were hostile toward my mother and, after several requests for special education services on my behalf, finally put me in the “special” group. I remember languishing at a circular table at the back of the classroom with the “slow kids”, receiving little or no attention most days and being given inane exercises. I was barred from sitting in one of the regular school desks with the other kids. I recall starting to learn multiplication tables in the third grade and then having to eavesdrop on the teacher (who spent most of her time at the front of the room teaching everybody but us) to finish learning them. Everyone, including the teacher who didn’t seem to care, wondered how I was such a whiz with multiplication tables. Nevertheless, I made very little progress in social communication in subsequent years. Had my mother not been so naïve, I am certain I would have been better off struggling in mainstream education. I, along with several other unfortunate souls, remained in a state of educational discard right up until my parents moved. In our new community, as I entered Westborough High School, my mother convinced school administrators there to mainstream me. Between that and the new friends who worked hard to draw me out and get to know me, my arrested social development was finally given a chance to grow. While recollections of my mother help piece my early childhood together, evidence of my developmental trajectory exist. I have no cause to doubt a word of her struggles with IEP planners. It is as much her story as mine.

In elementary school, I started to make a few friends (such as Mike, who enjoyed watching me retch as he squeezed pudding or pizza cheese through his teeth). Unfortunately, other kids also took notice of me and my experiences with bullying began in the fourth grade. All the way up into my junior high years, I dreaded when the teacher would have to leave the room to get materials or remove an unruly student. That was when the bullies would verbally assault me and sometimes surround me in a shout and poke session to encourage “the spaz” into a meltdown. I dreaded the period between classes. That was when the bullies knew they could drop threats, stuff me in my locker, or catch me in the bathroom for a wedgie or swirlie. And I dreaded recess. That was when the bullies made good on their threats with a pummel session, and often when one in particular took my lunch money in payment for “protection”.

Then I would come home and face another bully, one I would dread most when mother was out of the house running errands. This bully got away with very little beyond the usual raging tantrum when she was home. Her intercession on my behalf was as crucial to my life in this world as the blood of Jesus is to the next. But when she was away, I’d be chased around the house, locked in my room, pinned up to the wall with a murderous rage screaming in my face, or have to endure when he sometimes made good on his threat to bring out the belt. Except for a few happy memories, I choose not to remember a whole lot from these years.

Father eventually escalated to throwing things and damaging property. One day, he picked up a plate of hot spaghetti with sauce and shoved it into her face. That was when she told him to get help or get out. That was when he finally started getting therapy. His behavior was still erratic and, a year later, when I was getting set to enter the eighth grade, she asked me if I would be okay if we moved into a place of our own. She had sought help through women’s shelters but, at the time, they all had policies of not taking in children aged 12 or over. Due to rigid Pavlovian thinking, it was assumed that children over a certain age were exposed to the violence and incorrect modeling for too long and thus destined to become like their fathers, if they didn’t already show the outward signs of aggression. So my mother would have gone onto welfare. My father’s narcissistic behavior meant that he spent every penny he could on himself outside the home and never saved a dime. This led to hardship in years past to the point that, to hold onto the house, mother had to skimp on clothing and food. One weekend, when I was ten, I ate nothing for two whole days to “save” what we had. Of course I said absolutely not. How were we going to feed and clothe ourselves on her part-time income alone? But, at that age, I didn’t know people on welfare were living much better than we were at the time. The truth was I was simply afraid of change, poverty, and the unknown. This moment was pivotal, a singular juncture in my life I wish I could take back and do all over again. I love my mother very much, and my decision to let fear stand in the way of her happiness continues to haunt me.

We moved to Westborough, where I went to high school, because my mother had read that it ranked high on the list of school systems back in the mid 80’s. Mother also got rid of the house in Whitinsville and started renting instead. She no longer trusted her husband to be responsible with money and refused to get another house as long as he had to co-sign. It was a financially costly, but necessary decision. Part of the money was used for therapy, both for herself and my father (who today behaves relatively well but is emotionally uninvolved in our affairs – almost like a boarder living in the house). When we first moved to Westborough, my father’s behavior was still tantrum-prone, but at least he was dealing with his issues.

Going to high school in a new community gave me a new lease on life. Sure, I was not a “townie” and I was clearly a science geek, but a couple kids reached out to me and got me to open up and get involved. They encouraged me to try out sports (I did soccer and track & field) and Dan, in particular, was instrumental in getting me into Explorer Post 85, where I worked as a team with fellow high school students on various community service projects and earned certificates in firefighting, fire safety, First Aid, and CPR. These were the first good years of my life and, in so many ways, some of the best. Sadly, this period was marred by the only member of our graduating class to commit suicide. He couldn’t see life beyond a recent breakup with his girlfriend. It was my best high school friend, Dan. My other friends tried to hide the truth of his passing from me. I didn’t appreciate it, but they were stunned too and only thinking of me. In future dark hours, remembering what his life could have been has kept me from giving in to despair. Suicide is the devil’s way of removing light and hope from the world left behind.

Going to college was hard at first. Being on my own in a new environment for the first time was frightening. My parents getting an apartment nearby where I could live with them didn’t do enough to keep me from avoidance behavior. I didn’t apply myself with classes and spent many hours at the bookstore, library, and arcade. By the end of my third semester, my GPA was around 1.2 and I was on academic probation. Starting my third semester, I joined Campus Ambassadors Christian Fellowship and slowly started to open up. New friends began to open up to me. My fourth semester was considerably improved, both academically and socially. By the time I graduated at the end of my fifth year, my GPA was just reaching 3.0 and I had made the Dean’s list. Had it not been for the first three semesters, it would have been 3.6 but, just as when I was 13, I had to accept that you cannot go back and change the past. One of my friends from C.A. is still my best friend to this day, and is a music instructor who focuses on teaching guitar and keyboard to kids with learning and developmental disabilities.

After college, I did volunteer work (including three summers running a book reading group for kids aged 5 to 9 years old. I also held a full-time volunteer position at a large regional food bank. Then I worked at a PetsMart for just shy of three years. My mother decided to have me evaluated again, this time at the Ladders program office at Massachusetts General Hospital. She hoped a more formal diagnosis would allow me to seek assistance through Mass Rehab in establishing a career. We were both naïve about how state rehab services operated, and their limitations, back in the mid-90’s. Three things happened at this point that derailed my life.

1) I came down with a stomach flu that worked both ends the first day and had me dry heaving for the next two days. I developed intense pain in my abdominal area and was convinced I either had food poisoning or appendicitis. Somehow, even though I could neither lie down nor sit straight, I drove myself to the hospital. I languished in the emergency room area for over three hours as the pain remained as intensive as ever. I finally made a stink and mentioned something about a lawyer. In my pained, panicked, and disoriented state of mind, that proved a serious error of judgement. A nurse did give me the glucose IV drip I had requested hours earlier but, several minutes after she left, three other nurses presented me with questions about my feelings, my family and work relationships, and my sex life. I’ll admit to not being verbally sanguine with them, given the level of pain was still causing me to sweat. I found out later that the involuntary commitment paper had already been signed prior to this “interview” taking place. I had no idea it was a psychiatric intake!

2) This caused some interference in our plans for an evaluation, but I was sent over to my HMO clinic that evening and released. The evaluation took place three days later at Ladders of MGH as scheduled. I was diagnosed with Asperger’s Syndrome. But the hospital visit saddled me with an unjustified mental health record that cannot be erased, and scars that mar my trust in medical and social worker professionals. To this day, that trust must be earned – no more blind unquestioning faith.

3) The attitude of my Mass Rehab counselors suddenly shifted away from finding a steady full-time job. Now I had to get evaluated for medication before they would offer employment services to me. One alternative offered was a catering program for supported employment (sub-minimum wage, no benefits). This sudden shift came as soon as I asked them for advice on how to handle the malfeasance of the hospital. My own naïveté proved more harmful than any disability could have.

So I was left to find a couple of odd jobs, while I spent many days in avoidance behavior shut up in my room playing video games on my computer. Then, I got it into my head to learn more about Autism and Asperger’s Syndrome. There was no degree specific to developmental disabilities I could afford at the time, and there were few of them. I was aware of ABA at the time only in the context of its rigid, Pavlovian stereotype. So, even if there had been degrees offered in ABA and not just certificate programs (as there were at the time), I would have eschewed it given my recent life experiences. Instead, because I had a Minor in Sociology as an undergraduate, I chose to get a Master’s in Applied Sociology at UMASS-Boston where one professor was doing survey research in the area of autism service availability and family stress. It was a decent education, and the work-study led to my Master’s paper, but the internship I was promised somehow fell through after it was too late for me to apply for another one. So I ended up graduating without any work experience in the field, much to my chagrin. Luckily, as with my undergraduate education, I paid entirely for my Master’s degree from my savings.

My search for employment was stalled after graduation due to two things. One was my parents and I becoming homeless for three and a half months because the “help” my grandma promised my mother to help relocate “fell through” (she never intended to help, she just has a compulsion to see her non-favored daughter make bad choices – at her urging and against my mother’s better judgement – so she can be critical when things inevitably go horribly wrong). The other was courtesy of Osama Bin Laden on 9/11. We know what that did to employment. Again, I turned to odd jobs, but eventually found longer term employment. I have worked in a military clothing store one year, and recently ended three and a half years of employment in a corporate mail center. These are not what I had in mind when I originally thought of learning about Autism to find training methods to improve myself as well as help out ASD children.

Two years ago, midway through my mail center position, I discovered social networking sites MySpace and Meetup.com (and more recently FaceBook has gotten me in touch with a number of my old high school friends). Soon after, through MySpace, I met the most amazing woman. She also had Asperger’s Syndrome, went through many of the same school bullying experiences (though her home life was a bit less terrifying), and shared many of my interests. I fell head over heels too quickly, which turned her off to me, since she didn’t feel the same way about me. She had also recently been hurt and used in a relationship that was just sex on the side for a guy already in a relationship (for which she was never told), so I came at a bad time. It was because of her that I grew in self-confidence (and facial hair), and started pursuing social opportunities aggressively through Meetup.com and the young adult ministry at Grace Chapel. Thankfully, I am working to repair this relationship and I hope we can at least remain friends.

That being said, I was rather shocked when I found out that this girl chose to seek her Master’s degree in Applied Behavior Analysis. This piqued my interest to say the least. I have since learned that ABA is nothing like the stereotype and that the use of aversives was fading from the science of behavior modification as far back as the 60’s. Since my dear college friend and music teacher teaches to multiple types of learners, and suffered from severe dyslexia in school, he introduced me to Ronald Davis and his methods for treating disorientation in several types of learning disabilities (self-developed by Davis to help his own strong dyslexia). Some of these methods appear to parallel what I have been reading about in ABA and I would love to study the effectiveness of the Davis methods (the where, how and why) in light of modern ABA practices. I’m also interested in determining if any of his techniques could be adapted to train self-awareness in social situations (a benefit not only to myself if it could be done, but as yet another tool in the ABA teaching arsenal). I am grateful to anyone willing to give me such an opportunity, especially those willing to give me hands-on experience with Autistic children.

I’ve always gotten along pretty well with coworkers and managers on the job, with the exception of a couple individuals who had something to hide (an attitude about a third party or personal malfeasance) and had concerns about my being privy to them. I will definitely report malfeasance as it relates to work performance, including gross violation of ethics, since this impacts the integrity of my employers, workplace safety, and expectations of clients. Concerns over my ability to adhere to expectations of confidentiality are otherwise unjustified. I have kept many secrets of coworkers and a few of past supervisors. Some would have gotten them into trouble, most common being smoking a non-tobacco product in the privacy of their home. I am concerned for the health of friends and coworkers, but I’m not one to pass judgement. Everybody sins. Everyone makes mistakes. We all live in glass houses. I don’t cast stones.

Where my neurocognitive challenges have gotten me into trouble is in communication and listening. Through work with a neuropsychologist and membership in a Toastmasters club, my eye contact and voice projection have improved. These are easy to train. Not so easy is the fact that some interactions have a social component that have to be explained to me in two or more different ways before I understand what is being conveyed. And I still sometimes forget to state what I am talking about before launching into the middle of a subject with someone. Either one can prove an annoyance to supervisors and, occasionally, coworkers. Thus, it is clear to me that, while training has improved certain aspects of my communication, I still have issues with intuiting the awareness of others to my thoughts, motives, and personal state of mind.

Proper nutrition, adequate sleep, and social activity through coworkers, Meetup.com, and Toastmasters, are all necessary components of better social communication. I cannot learn what I have been taught without the means or the environment with which to practice skills. One component I miss from my life is a structured learning environment, such as graduate school, that engages and tests the limits of my cognitive abilities and grants access to sources of information (Gale Expanded Academic Index, Science Online, and Psych Net, among others). I have always enjoyed academic research and, while editing information overload into a concise paper can be a hassle, I have been successful with this in the past. There is a French saying that we learn best by doing. Now I need an education where I can actually apply what I learn.

In behavioral science, I offer several unique perspectives. One is a strong written and verbal ability to convey how an autistic mind processes his environment, and what motivates both my actions and interpretations of others’ actions. Another is my understanding of PTSD, whether the cause is school bullying or a source closer to home. Finally, how faith in God, the unwavering dedication of my mother, and support from friends, has awakened in me a need to develop my social concepts and find ways to maintain self-awareness in social situations where I need to intuit others’ state of mind. My mind is no longer closed to ABA and the teaching concepts of behavioral science. I can go beyond keen observation of behavior to framing the knowledge gleaned and actually apply it toward teaching social concepts and self-advocacy. I am forever grateful to that young MySpace woman with Asperger’s Syndrome, for opening me up to new experiences and challenging my preconceived notions of early intensive therapy.

I am a survivor of many tribulations to be sure. According to the textbooks, given my experiences, I should be a disturbed individual prone to self-destructive habits. Instead, my purpose for living is the hope that I can one day be a mentor for others like me, and provide the conceptual learning and support I wish I’d received when I was young. I even hope to one day buy a multi-family home and provide at least a few gentlemen on the Autism Spectrum a place to live at affordable rates. My previously closed mind took me in a direction where I learned about services and the stress families with Autistic children often experience, but it didn’t take me where I needed to go in terms of a career in Autism consulting. Ten years later, I am looking to academia once again, seeking those willing to take a chance on me, those willing to offer me a second chance. I believe Autism, like Dyslexia, is a learning disability whose limitations can be compensated for, depending on the individual, to a greater or lesser degree. I have a desire to be a role model for those less advantaged, such as Autistic children and teens living in poverty, broken homes, or simply misdiagnosed until they were older. I have learned so much, through my own troubled childhood, my employment, my academic experiences, and painful personal lessons. At life’s end, sooner or later, we must question what it was all for. What was any of it for? To have existed is not enough. Existence is futile. I want a life. To pursue one’s passion is to truly be alive. It would be a travesty if my experiences boiled down to serving burritos at Taco Bell. A mind is a terrible thing to waste. I offer you the opportunity to help mould it.

The following article deals with successful professionals with dyslexia, but it also applies here.

http://www.careertrainer.com/Request.jsp?lView=ViewArticle&Article=OID%3A33637