Aware vs. Informed: Autism, Epilespy, and Bipolar Edition

Awareness is a pretty trendy thing. A big deal is made of breast cancer awareness, autism awareness, gay rights awareness, human rights violations awareness, etc., especially in privileged groups. If you know about the problem, the logic goes, then it will go away.

Wrong.

The thing about awareness is you don’t have to deal with the messy facts. Instead, you get to paint a subjective picture, preferably one that gets people to give your organization money. Informing people, on the other hand, is more work, because you have to explain things, and you have to get people to look at things differently, and you have to get them to change how they think about basic things. It’s not enough to know that a problem exists. You have to know why it’s a problem, and why it would be better if the problem was gone. You have to know what it’s like to live with that problem, and you need to eliminate inaccurate stereotypes about the problem. That’s a hell of a lot more work than raising awareness, but informing people actually works. It’s hard, but it gets shit done.

So let’s get some shit done. I’m going to be using some terms you may not be familiar with. I’ve defined the terms I think need the most explanation on the Definitions of Common Terms page, but if there’s a term in here you don’t know, ask me in the comments and I’ll explain it.

One of the hot things to be aware of these days is autism. The ironically named Autism Speaks (They say they speak for autism, but have one autistic person on their entire board. And that’s a recent addition.) operates an awareness campaign aiming to make people aware of the fact that autism is a horrible, horrible tsunami epidemic, and it leaves the child (because there are no autistic adults) that happens to be cohabitating with autism (because you’re not autistic, you have autism) as an empty shell of the person they should be. Another push of the campaign is that the people hurt by autism the most are the parents, who suffer so  much because their child is different than they wanted them to be.

But that’s not an accurate picture that Autism Speaks is painting.

Most of what I’ve learned about autism has come from living with my autistic roommate. Autism awareness teaches that autism is bad and needs to be cured so all those neurologically different people who don’t look us in the eyes when they talk, flap their hands when upset or really happy, and say exactly what they mean instead of couching their thoughts in the ambiguity that is person-first language can go away, because they make us uncomfortable, which isn’t ok. It teaches that autistic people can’t think for themselves, so neurotypical people should make their choices for them.  It teaches that parents of autistics are martyrs, and if they abuse or kill their children, they should be punished less, because having an autistic kid is so hard.  (Think I’m overstating? Read the list of trial results for autistics who were murdered, and then compare it with the trial results for non-autistic kids who were murdered.)

But here’s the truth I’ve learned about autism from my roommate: The thing that makes being autistic shitty isn’t being autistic. Being autistic is shitty because the world isn’t set up for you, but you’re supposed to act like it is. As my roommate says, “We give 95%, everyone else complains about the 3% they grudgingly give & then they demand that we meet them halfway – because  97% is the new half.” I could say a lot more about this, but K says it better, so read her blog already.

Another thing I’ve learned about is epilepsy. Our awareness of epilepsy is generally “people fall down and shake a lot, and you should put a spoon in their mouth so they don’t swallow their tongue.” But the fact is that there are many different types of seizures, they all look different, and most seizures don’t look like the ones you see on TV. You don’t need to put a spoon in the seizing person’s mouth, and they probably won’t need an ambulance. The flashing lights that are so common outside (strobes on bikes, flashing smoke alarms, the lights on emergency vehicles) trigger seizures – well enough that doctors use the same lights to test for epilepsy.

The thing I’ve learned about from my own experience is the truth about what it’s like to have a severe chronic mental illness. I’m bipolar. When most people think bipolar, they think of a wild man who could snap at any moment and slaughter everyone around him. The fact is that bipolar alone doesn’t raise the risk of violent behavior. That risk occurs when the person has both bipolar and substance abuse. I will freely admit that bipolar disorder carries with it an increased risk of substance abuse, so one could argue that since being bipolar increases the risk of substance abuse, and bipolar + substance abuse = higher rate of violent behavior, then bipolar contributes to a higher rate of violent behavior. But saying that bipolar = dangerous and violent is a drastic oversimplification, and incorrectly places the cause of violent behavior on bipolar alone.

Another myth about bipolar is that it’s degenerative – that once you go batshit, you stay batshit. Not true. Bipolar is a relapsing, remitting disorder. Periods of depression, mania, and mixed mood are interspersed with periods of normal mood. These periods are called remission. The longer you go without treatment, the worse your bipolar gets, and the less time you’ll spend in remission.

People also seem to think that treating bipolar is relatively simple, but it’s not just “I’m the doctor, here, have some lithium, kthxbai.” There are lots of bipolar meds (because you absolutely cannot treat bipolar successfully without meds), all falling under the heading of mood stabilizers. There’s the old standby, lithium, the super-trendy atypical antipsychotics,  and my drugs of choice, anticonvulsants. Different people respond differently to them, depending on how their brain is wired, and sometimes you have to mix and match to find the regimen that works. Even with meds that work, a lot of people stop taking their meds because the side effects suck so damn much, and being manic is way more fun – at least until you do something that sounded like a good idea at the time, but it turns out that you just fucked up your life/fucked up your loved ones’ lives/are dead. That’s why therapy is such an important component of bipolar treatment – you have to learn to  accept the shitty side effects because you’ve realized that untreated bipolar is worse.

Bipolar also has a ridiculously high suicide rate. 1 in 3 bipolar people attempt suicide at least once, and of those people that attempt, half are successful. That’s a death-by-suicide rate of 1 in 6. And that doesn’t include the deaths that result from the reckless behavior characteristic of mania. (I was startled to find out that anorexia beats out bipolar as the most fatal mental illness. Anorexia is stereotyped as a disease for girls who are obsessed with being thin, and thus sad but not really a big deal, but with a death rate higher than 1 in 6, it’s a pretty big fucking deal.)

Bipolar is devastating. It’s not just acting differently one day than the next, or being “overly emotional.” It’s a big red self-destruct button that you just can’t stop pushing.

Aware yet?

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Posted on December 31, 2011, in autism, awareness, bipolar, epilepsy, mental illness, Privilege, Psychology, psychopharmacology, Science, Social Justice. Bookmark the permalink. Leave a comment.

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