Monday, September 20, 2010

Post-Traumatic Stress Disorder & Me

Trigger warning for discussions of assault, sexual abuse and trauma

I forgot to mention in my previous post about Obsessive Compulsive Disorder that I was also diagnosed with Pica and Post-Traumatic Stress Disorder. At the time I did not point it out because while the diagnosis of OCD was new to me, I had already guessed that I had both pica and Post-Traumatic Stress Disorder. The news was just that I was now officially diagnosed, and therefore perhaps could be taken seriously when I voiced my concerns about how they manifested themselves.
In my adult years, I've learned to manage my Pica, and it is no longer pressing for me, apart from the occasional binge on kool-aid powder when things aren't exactly going my way.
However, my PTSD is relatively new to me. If I were to pinpoint the exact time in my life when it began to manifest itself, it would be around the age of fourteen, at a time where I was forced into a terrifying scenario where two different people in my life took advantage of their authority over me in different ways.
One used his status as a "friend of the family" to sexually assault me when we were alone together several times, leaving me frightened and unsure what to do. The only response I ever got to my obvious discomfort around him when others were present was being chastised for being "antisocial" and "rude". The other one took advantage of his position of authority in my life to terrorize me, frightening me by swinging a baseball bat over my head, manhandling me, screaming in my face, and threatening to hurt me or break my possessions, telling me I was worthless, ugly, stupid and fat, blaming me for my mother's alcoholism, and telling me that if I wasn't "careful" I would end up kicked out of my own house.
After going through that horror on a near daily basis, I began having nightmares, wetting my bed, withdrawing from being hugged or touched by people I love, and obsessively eating. I was getting, on average, about 5 hours of sleep per night, the rest being spent in terror and shaking.
It receded somewhat after I left my hometown to go to university. Towards the middle of university though, when I entered my junior year, a single incident made my PTSD come back full force, landing me in the hospital briefly for a strong anxiety attack.
Since then, it has managed to get worse and worse, but there was never a name for it to the doctors until now. It wasn't until I admitted the incidents described above that it became clear to the doctor what the cause was.
But having an official diagnosis has not alleviated the nightmares or the anxiety. I continue to have nightmares, I continue to resist being touched, and I continue to be fearful and mistrusting of people.
PTSD has affected my life in many ways, both subconsciously and consciously. One of the most obvious ways it affects my life intertwines with the way that autism impacts my life. Being as I am, I avoid eye contact and I have an obvious aversion to the social activities which seem to act as staples of life for people in my age group: Clubbing, partying, music concerts and drinking copious amounts of liquor are all activities which I steadfastly refuse to partake in, unless roped in reluctantly, which happens more often than I should like.
This is obvious to any other person with autism: Such venues are noisy, unpredictable, and often involve an unfamiliar environment chock-full of sensory overload. Vomit, sweat and liquor smells, loud music, flashing lights, sticky floors, and other people crowded against you are a sensory overload nightmare, and can end unpleasantly for all parties if it overwhelms you.
Another reason I avoid them though, is because I have a particularly strong aversion to being touched by anyone without my permission, and something as minute as a hand brushed against me could leave me panicking. The strongest factor in my avoidance though, is my concern for other people. When I am triggered, I get really violent. Screaming, scratching, and biting are beyond my control in such scenarios, and I fear not only my personal safety and mental health being compromised, but the safety of others.
This fact breaks my heart. In spite of my aversion to social events, I enjoy having friends and people I can connect with, and knowing that I pose a danger to them if I am triggered saddens me greatly.
Having an official diagnosis, I hope, will help me find a way to control my own mind and reactions to a degree, so that I can have independence over my life and emotions.
But the last barrier I feel I will have to cross over is not from my own disability, but rather, the public perception of disability. Once again, like OCD and autism, PTSD is a widely misunderstood and mis-characterized disability. And little sympathy is reserved for those who have it, even those who got it "honourably" in combat or a similar field. Regardless of what caused it to manifest though, I think it is important that I be vocal about the fact that I have PTSD. It will be less likely to be as radically misunderstood if a person you know, a person familiar to you, has it, rather than it being an abstract concept for television or a movie.

Thursday, September 16, 2010

Nostalgia Critic's Apology: Nice effort, but....

Trigger Warning for Disablist Language

The Nostalgia Critic, one of the most popular, if not the most popular, incarnations of That Guy With The Glasses, a famous internet personality who does what most of us have been dreaming about since the age of 11 (Well, at least I have): Having a massive fan-base and millions of hits for the virtue of recording videos pointing out just how asinine/impractical/condescending some movies can be.
I admit it, in spite of the times that they gaffe with disablist language and other fails, I'm a huge fan of the Nostalgia Critic, and other personalities on the site, like Film Brain, The Nostalgia Chick, and especially Linkara, who won my heart with his feminist criticism of comic books.
The Nostalgia Critic angered me greatly though, when during his Earnest Saves Christmas video, he made a cheap joke at the expense of autism. Mercifully though, he was called out on this by autistic and neurotypical fans alike, and removed that segment from his review of Earnest Saves Christmas, and apologized in this video pointing out his "fuck ups":
It's the #1 mistake, and the fact that he apologized gladdened my heart.
His apology had some major mistakes, and I think it is only fair that I address them honestly, as an autistic person and a fan of his.
I am glad that he apologized at all. Most people who insult autistics and autism never apologize, they just moan about political correctness gone mad. But it is not okay to have your apology framed around the idea that there are "high functioning" autistics, as well as "low functioning" autistics (For more on why the terms high functioning and low functioning are not appropriate, check the post I did at Womanist Musings:
To suggest that "Oh, there are autistics who are smart, act their age, and can talk and aren't amused by puppet shows, therefore I shouldn't have made this joke" devalues people who do not "pass" as neurotypicals as easily as people with Asperger Syndrome do. It draws a false value upon intelligence and verbal ability, suggesting that only those who act just enough like neurotypicals are worthy of being treated with respect, dignity, and kindness. Maybe that's not what he meant, but that was the impression I got when he mentioned that. It felt really jarring and wrong, like "Sorry that you auties who were smart enough to figure out I was insulting you were hurt, from now on, I won't do that. But I still don't think too highly of the value of people like you who can't talk or live independently.
And then there's his mention of "I know autistic people". Without playing oppression Olympics, it's been debunked enough times when someone says "Oh I have gay friends, so it's okay if I espouse homophobia" or "I have black friends, I can't be racist." It's just as inexcusable here.
Once again, I could be wrong. He could be pointing out that he knows people with autism who are not amused by children's puppet shows, but once again, this is drawing that false value upon people with autism who can talk and "pass" as neurotypical, suggesting again that people who may be amused by puppet shows are in fact worthy of such mockery.
I'm sure he learned his lesson and will never make an autism joke again. But I am hoping that the next step will be respect for all people who are non neurotypical.

Tuesday, September 14, 2010

Like one disability that is radically misunderstood by the general public wasn't enough!

Today, during what I thought was going to be a routine examination, I had a big piece of news dropped upon me by the doctor. She diagnosed me as having Obsessive Compulsive Disorder, an anxiety disorder that is familiar enough to the general public by name, but remains as widely, if not more, misunderstood than ASDs.
I had actually before been diagnosed with OCD, at the age of five by a medical practitioner in my hometown, after I showed "strange" behaviour in school. But my mother didn't agree with the diagnosis, perhaps out of embarrassment, or out of a misunderstanding of OCD meaning that I should have kept my room spotlessly clean, and she didn't put any more thought into it. The last time it was mentioned was when I was diagnosed with Asperger Syndrome, and my mother was so embarrassed she didn't even mention it by name, and wrote down what the Doctor had diagnosed me with and passed it to the psychiatrist without giving me a chance to look at it. It was only by my own snooping and invoking my right to know my own medical history that I learned of this later.
So naturally, I was familiar with the possibility, but had not given it much thought. Much of my behaviour that is the criteria for diagnosis was behaviour I dismissed as being related purely to my Asperger Syndrome, rather than a signal of another disability. Nervous habits, highly ritualized behaviour, an aversion to mixing food on my plate, the need to knock the walls in a room with my knuckles before sleeping in it, clawing and kneading clothing, furniture, and wallpaper to calm down, sanitizing my doorknobs, and having to touch my laptop, bedpost, or toes before remembering something all sounded like something that a typical aspie experienced to me. I have many other ways of filling the criteria, but they're either extremely triggering, personal, or downright embarrassing, so I am opting out of sharing it on this blog. But with a bit of independent research from the library and going more into detail with the doctor, I decided that the diagnosis fit, and I've now accepted it. In addition, with no surprise to me, I received a diagnosis of PTSD and Pica, both of which I already knew or suspected I had, but had not obtained an official diagnosis for until now.
I'm anticipating many changes in my life owing to this diagnosis, mainly in my perception of myself, and how my disabilities will affect the way I am treated by society. I'm hesitant about fully "coming out" as being Obsessive Compulsive, because I worry not only about minute things like being jokingly called "Mr. Monk" and asked if I mind a lamp being moved three centimetres, but big things like being dismissed as a liar because I do not fill the common stereotypes of an obsessive compulsive, who are portrayed as being hygienic and orderly to a fault, which I certainly do not fulfil.
But every new thing I learn about my brain and the nature of disability is a door opening for me. This gives me a chance to learn why my brain works the way it does, how it works, and how I can best use that particular mode of functioning not only to lead an optimally happy life, but also to help others who may have multiple mental disabilities. Without looking up any of the numbers off-hand, I'd say we're probably more common than people give us credit for. And the more we speak out, the more difficult it becomes to continue to stigmatize and isolate us.

Saturday, September 11, 2010

On living on my own, its challenges and joys

Last month, I moved into an apartment run by my university, as a way to get out of dormitory life and see if I could manage on my own effectively. I've always been really frightened, yet fascinated, by the prospect of living on my own. I am fully aware of my own limitations, but I've always had confidence in my ability manage, so long as I was given support.
Curiously enough, the biggest barrier thus far on my journey was not anything I was expecting. It was a simple matter of not getting the emotional support and encouragement that I craved as I set off to live here. I was told that I wouldn't be able to manage, that I would starve because I was a bad cook, that I would not be able to pay my bills on time or commute from my place to university. My mother often would send mocking emails to relatives, saying she was anticipating how many months I would last, knowing that I was so dependent and weak, and didn't know how to take care of myself.
That has been, quite honestly, the most crushing aspect. It led me to become extremely depressed and frightened, and for a while I thought about dropping out of university. It was only the encouragement of friends and loved ones that believed I could manage who pulled me out enough to permit myself to give it a try. But the difficulties continue, in other ways.
Two weeks ago, I lost my job, and I've been trying hard to find a new one. But no job means no money, and my bank accounts were of course drained by textbooks. So I've been living off of food from the food bank, donations from kind friends, and my lovely room-mate. It has been a lifesaver, but at the same time, it is exceptionally difficult to live off the kindness of other people. When I went to the food bank, the selection of fruits and vegetables was tiny and sad, and most of the fruit there had been rotted in several areas. So I stocked up on bread items and canned foods.
Had I been forced to do this when I was younger, I probably would have starved, because of my serious aversion to canned food, and my hatred of any bread that wasn't a particular brand of sourdough. For someone else with a disability involving eating sensitivities or certain intolerances, it would be an even worse situation. Someone with a gluten intolerance would have a hard time at the food bank, as would someone with diabetes, or a plethora of food related difficulties.
Had I still been living in the dorm, I would have had my meal plan to depend on upon losing my job. But now, I am compelled to make my own way in terms of food, and I'm very lucky I am managing. Other people do not have the same privileges that I do. 27 percent of the families in my town live below the poverty level, 34 percent of single women live below the poverty line. How many of them are disabled, or have children with disabilities? It would be astoundingly difficult for them to manage with the limited foods available.
Getting a job in and of itself is difficult for a person with autism. I am limited as to what kind of jobs I can take on. Several reasons are because I cannot drive and therefore need to stay within walking/biking distance of my house, I have difficulty dealing with "flexible" schedules, preferring a routine set in stone, and difficulties socializing. This rules out a lot of jobs in areas that require certain skill sets that are beyond my job grasp. I'm not the only one feeling this pain. According to the Center for outreach and Service for the Autism Community {COSAC} 90% of adults with autism are unemployed, compared with other disabled adults who have a 75% unemployment rate. These odds are not particularly optimistic for me, and the clock is ticking. I am hoping with the help of several disability organizations in my town, I can find a job, in a field where I can use my skill set without having to worry about my shortcomings.
Other difficulties are present in apartment life. I have difficulty navigating streets, so having to lay out a new mental grid as to where everything is relative to my location has been difficult. Sleep difficulties are plaguing me (I've entered in a raffle to win a weighted blanket for this reason) and my hermit-lifestyle is being interrupted by invitations to clubs and parties, which I accept to be polite, but I'm not too sure about how well I fit into that particular lifestyle either.
The joys though, are overwhelming. Having my own kitchen for making tea, not having to share a toilet with 40+ other girls, having a space of my own where I can stim and relax without disturbing my room-mate, and having a couch where I can nap has been a wonderful experience. I'm interested in seeing how it all unfolds in this last year of undergrad university here. But so far, the challenges have not out-weighed the wonders.

Monday, September 6, 2010

Scary Monsters, or New Angels of Promise: The New Age perspective on Autism, pt. 1

People who know me very well know that when it comes to my personal beliefs, I am a dyed-in-the-wool skeptic. I cast a critical eye over everything that comes to my attention, meticulously prying it apart until I can make an accurate assessment about its validity. Nothing escapes my criticism, and it is through this lugubrious system of trial and error that I came to many of my viewpoints today, such as neurodiversity, fat acceptance, antiracism, and my attitude towards religious fundamentalism.
A big part of my skepticism stems from the fact that I, as a person with autism, have been frequently targeted for a variety of false claims and promises of miracle cures. Everything from chelation to herbs was offered as a way to transform my grouchy, taciturn, stuttering persona into that of a bubbly neurotypical. But my skepticism is not always aimed at the usual targets. It's easy enough to see why I would rail against the likes of Andrew Wakefield and Jenny McCarthy, who have turned autism from being a hush-hush topic into an explosive debate surrounding, not the welfare of people with autism or how to improve their lives, but chasing haphazardly after something which isn't there, a single, definitive environmental cause which could, if identified, stop it in its tracks.
Doesn't work that way, folks. Plus, it's squandered endless airtime about autism on something which in the end, isn't even about autism. It's about the ego of celebrities getting out of control. But McCarthy and Wakefield found a comfortable audience in the first place amongst this society, which mainly understands autism through the Medical Model of Disability, or the belief that disability is inherently harmful and disadvantageous, which means much time is spent figuring out the two C's, cause and cure. Even when it would be cheaper and more convenient in the long term to simply modify attitude, behaviour, culture, disability awareness, and environment (My own ABCDE) the medical model dominates. That is why, in the less alt-med-soaked sectors, charities like Autism Speaks are still treated as the number one source of autism information. It's a problem that is not limited to advocates of chelation and oxygen chambers, the cause and cure attitude can be found in nearly every mainstream discussion of autism.
That is why I was curious and intrigued when I discovered that there is an entire subculture of New Age thinkers who believe that people with autism are not diseased, or even disabled. They consider them to be, depending on the interpretation, messengers of some type of God, psychics, people with special (read: beyond human, such as telekinetic or telepathic) abilities, or mind readers. Among those is self-diagnosed person with autism William Stillman, probably the most famous of the people promoting this alternative view of autism.
After years of dealing with the medical model, and endlessly being forced into a dunce cap for the sake of one charity or political cause or another, the tone of that seems downright seductive. Being told, after endless parades of doctors, discredited doctors, charities, and other organizations telling you that you are an empty husk, that you're "vaccine-sickened" or that only many years of ABA are your only hope to ever achieving happiness, that you are special, that you go beyond special into a category that's downright mystical and holy, can cloud a lot of people's judgements. Even the most cynical aspie like me softens at the idea of developing this new way of thinking that celebrates rather than vilifies autism and disability.
But I'm not going to leave this warm feeling unattended. For the next few months, or however long it takes me to do so in a thorough, honest manner, I am going to examine the literature and media surrounding this new age attitude towards autism. What can we learn from it, and how much of it is worth considering? Can elements of Stillman's philosophy replace the medical model of disability? Or are they both equally harmful in different ways.
If you have any recommendations on literature or media which reflects this type of thinking that you wish for me to review, please recommend it in a comment. I am going to try to look at this with complete honesty and as little bias as I can manage, while still maintaining a thorough and rigorous analysis.