Possible Triggers: Bullying, abuse, medication, self-harm.
When I was ten (with my eleventh birthday imminent), I started attending a prep school in New Jersey that was supposedly going to solve all of my problems; I wouldn’t be bored at school, I’d be around other kids with (presumably) the same academic ability, and I’d be far away from the bullies that tormented me at public school.
To boost the odds of success at this school, my as-yet undiagnosed “problems” – emotional, social, and behavioral – were diagnosed in an hour session as chronic depression and I was put on Prozac to help the Everything that Prozac was supposed to “cure.”
The way it was supposed to go down looks something like this:
How it actually went down was worsening depression, behavioral and emotional control issues, more bullying, and being totally lost in an academic setting that relies on the student having excellent executive function skills. My second and final year there I actually attempted suicide. Apart from the lack of “Black Box” warnings on psychiatric medications like Prozac in the nineties, there were several things that went Very Wrong here.
Firstly, it was assumed that I was only struggling with a mood disorder; second, it was assumed that an SSRI antidepressant was ideal treatment for this mood disorder; third, it was assumed that executive function issues were minor and could be solved by seeing a lady once a week who basically trolled my homework pad for completeness and reorganized my Trapper-Keeper; fourth, it was assumed that adolescents with higher IQs are somehow less likely to be assholes.
As it turns out, apart from being autistic (and frequently finding myself surrounded by assholes), I struggle with a number of co-morbid conditions. “Co-morbid” in this context is taken to mean:
“…comorbidity is either the presence of one or more disorders (or diseases) in addition to a primary disease or disorder, or the effect of such additional disorders or diseases.” [Wikipedia Article]
Co-morbidity in autism adds a whole new dimension to that phrase, “if you’ve met one person with autism, you’ve met one person with autism.” Not only is autism itself a spectrum with wildly varying strengths and challenges, but often we have other stuff seriously interfering with our lives – and those things can have their own spectrum. This contributes a lot to misdiagnoses, which I personally think is the real “autism epidemic.”
Apparently, Reality is Messy
A short list of what I’d say I struggle with in addition to being born with a different OS (operating system), all of which should and probably will have their own post(s) in the future:
Sensory processing disorder (“… difficulties with taking in, processing and responding to sensory information about the environment and from within the own body.”)
Executive dysfunction (“… a disruption to the efficacy of the executive system.”)
Trichotillomania (compulsive hair-pulling)
Dermatillomania (compulsive skin-picking)
All of these things intermingle. For example, I might struggle with getting chores done (exec dysfunction). I might already be depressed or anxious, or this might add depression and anxiety as I feel bad about not getting them done. I’ll ‘zone’ out because of this, and I might end up missing half an eyebrow and have several picked scabs on my face – yeah, I know. It’s really attractive. The skin picking in particular goes back to when I was ten or eleven years old, and I have scars all over my body from it. It’s also the primary reason I learned how to do my own makeup.
Another example: I go to the store when I’m not feeling particularly ‘strong.’ Maybe I had a crappy day where chores didn’t get done. Morgan, my boyfriend, has been having neurological issues which make it hard for him to go into the store at all (+anxiety and depression), so he is just my ride. Luckily, for over a year until these problems started, Morgan always shopped with me so I have a routine. I have my grocery list, which is laid out by aisle and I absolutely must stick to the order or I will forget something. I do not want to make this trip twice. I’m finding myself blocked by people and their carts, and struggle to say ‘excuse me’ loud enough to be heard. I might get stuck between two carts and panic as I don’t have an escape route (escape from what, I don’t know, but blocked exits are insta-panic for me, even if it’s Morgan doing the blocking and I always feel safe with him otherwise). I’m getting stressed out and I know I’m not returning the occasional friendly smile or eye contact that happens from an employee that is always there, always friendly, and always helpful.
I work through my list, walking through aisles staring in my my cart and using peripheral vision to note where I am and what is around me. I perpetually forget to bring an mp3 player or sunglasses. The bright lighting makes me feel exposed, and hurts my eyes. A kid is screaming at the top of his lungs. Even though I know it’s possible that the screaming kid nearby might be an autistic person like me and having a meltdown, the noise is making my skin crawl. I want to run out of the store, maybe leave the cart where it is, full of stuff, in the soda aisle. Reading the list becomes difficult even though I’ve been able to read since I was two. Even the white paper hurts, and my vision feels like it’s tunneling. Someone accidentally brushes against me, and it’s insta-panic again, and the skin along my spine crawls and it takes everything I have not to scream at whoever did it because I know that it wasn’t deliberate but I am just completely Done with this whole trip.
I make it to the checkout. I stare at anything but the cashier even though I know it’s rude. Back when I was wearing autism pride shirts, I’d often hear this: “Oh, you seem to be doing so well.” I consider the fact that I can still walk out of the store and leave everything there. I mumble something about how I never leave the house except to do this shopping trip and maybe one or two other trips during the week. Pay my bill. Get to car. Load up, get in, struggle to talk to Morgan. Spend the rest of the night talking to myself while flapping and vocally stimming (hidden in the form of talking to my cats, usually, but sometimes when I’m overloaded I can’t manage to do even that) to figure out what the hell I’m doing in the kitchen, forgetting steps in cooking and getting confused by which timer is which. Often when I’m like this, Morgan will say, “Come here.” and I’ll curl up in the fetal position on his lap and he’ll hold onto me, giving me weight.
Granted, that second example is not my experience every week, but it’s a great example of how everything can work together and completely overwhelm me. My coping strategies right now when I’m out are not that great, and something that I work on with Morgan and my therapist.
On the Unstable Condition of Some Mood Disorders
The final thing I want to note on my struggles with co-morbid conditions is the mood disorder. My struggle with depression isn’t a level, steady thing. I have depressive episodes which are intense, and disabling. When they hit, it feels like my medication isn’t working. I can’t concentrate, do chores, or even enjoy my hobbies. Shopping trips have to be shorter, I might not be able to do them at all. I can be easy to agitate, and once agitated I can be extremely irrational and difficult to manage. While the same can be said for my meltdowns, there’s a quality to these that is very difficult to explain. They’re angrier, that much I know, and they tend to be directed at or about a person. Morgan: “It’s more like an unfocused, internal rage, bursting out, rather than massive frustration boiling over.”
My birth father tends to have similar irrational outbursts, but is unaware that he’s having them, has them more frequently, and is possibly bipolar in addition to autistic. I didn’t grow up with my birth father, or even know him until I was seventeen, so it seems likely genetics have played a part in this. Meanwhile, my autistic sister who did grow up with him also struggles with depression, but the explosive outbursts seem to have skipped her over.
These can last weeks, starting without notice and disappearing almost as suddenly. In fact, I have just come out of an episode that had been brewing since February. I hit it like I drove into a brick wall at a hundred miles per hour not long after my inaugural blog post, which is why I have been silent since. There was even a point where I engaged in self-harm, burning my arm several times in response to a dream about my mom (more on that relationship some other time). Fortunately, those are healing well, and so am I.
Right now, we are still in the ‘tracking’ phase of these episodes with my therapist, who I’ve been seeing a year. The long-term goal is to figure out if it’s possible to prevent them, shorten them, or at least ensure my total safety. It’s a work in progress.
Post Script: Medication Can Aid, but Doesn’t Cure*
*Aids some. There are people who react poorly to medication under all circumstances. I’m not one of them, but I still feel it’s important to make this point. Please note everyone’s response to medication is different and the meds that make my life miserable could safe someone else’s life.
Those of you who are thinking, like the cashier, “Oh, but you do function well!” need to keep this in mind: Most of the function I have now is largely due to the assistance of medication, as well as the fact that I am now unemployed. I know from exceptionally painful experiences that SSRIs (ie: Prozac), anti-psychotics (ie: Risperdal), and benzodiazepines (ie: Valium, Xanax) do not help me and can actually worsen the symptoms they are meant to treat.
These days, I am on Welbutrin SR (2x 150mg pills AM) and Buspar (10mg 2x day). Without these, my ability to do anything like go to the store would be impossible. Maintenance of my relationship with Morgan would be impossible. It’s a baseline boost; I still have to do the work, but the medication makes my ability todo the work possible by reducing stress and increasing my frustration tolerance (notoriously low). This in turn diminishes how many meltdowns I have. The fewer meltdowns I have, the more energy I have to devote to improving my coping skills. Better coping skills means even fewer meltdowns, less anxiety, and less depression.
I’ll go more in-depth on medication in the future, because it’s been a hell of a trip learning the tricky business of finding therapeutic meds and dosages.