Posted by: E (The Third Glance) | June 9, 2013

Autism, Pain, and Self-Injury…

Lets talk about pain, self-injury, and being autistic. This post is going to get personal, and it’s not going to be pretty. This post contains discussion about girlie issues and self-injury, so if you don’t want to read, you have been warned. Anyway, here goes…

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I have very mean lady-parts. I swear, every time they decide to go and do that thing they’re supposed to do every month (and it’s never ever every month, it’s never even predictable in the slightest, but that’s a different story), they make sure to remind me, viciously, that they would much rather exist outside my body than in peace with it. As a consequence, approximately 8 or 9 times a year, I get debilitated for several days while my uterus attempts to burn its way out of my body. And every time, I end up not being able to sleep, or function, for at least a day, usually two. (Last time, it was a whole freaking week!) I’m not looking for suggestions, or anything else to “fix” it. That’s what doctors exist for, and it’s not like I haven’t “sought help” for this before. That’s not the point of this post. The point of this post is to discuss what happens to me when I get past a 7 or 8 on this very useful pain scale, and last night, I was most certainly at a 9… I have been at the 10 before too.

When I get to a point that I’m incoherent with pain, I cry out. But more than that, I start biting. I bite my own arms, legs, whatever I can get at. It’s not a conscious decision, it’s just something that happens. Because for whatever reason, it seems to help. Not exactly help, but it’s a way for me to control the pain my body is feeling. Not all of it, of course, but some of it. I sleep in a room with pillows and stuffed animals surrounding me. There’s nothing hard near my bed. Because if there is, I would bash my head into it when this kind of pain comes around. As it is, I spent 3 hours last night sobbing uncontrollably, bashing my head backwards into my pillows, biting my arms, and contorting my body. Why? Because I was in uncontrollable pain, completely overloaded, my body was desperately searching for some way to fix it. I woke up this morning and there were still bite-marks on my arms. I am not proud of this. I really don’t like that I hurt myself when I’m in pain. But that’s what it is.

And as I was wide awake most of the night, attempting to relax and convince my body that it really didn’t, in fact, want my uterus to crawl out of my abdomen, but that it wanted to sleep instead (and no, the pain meds with sleep-inducing drugs did absolutely nothing), and leaving bite-marks all over my arms, and stimming and flapping my arms and legs, and bashing my head against my pillows, I was also, off and on, pondering why. It’s not a controllable thing, you see. I know I shouldn’t bite myself. I know I shouldn’t flap my feet until I feel my ankle joints pop. I know my arms aren’t supposed to bend that way. I know my head would do better if it weren’t bashed (though at least I know enough to bash into pillows). But this is my brain’s way of regulating extreme discomfort.

When I’m mildly uncomfortable, I often bite my thumb or my fingers. Or I dig my nails into my palm or my other hand or my arm. I know enough not to do too much, but it’s a coping mechanism. A way for me to control the pain, to help center my body and figure out what is going on. It’s a self-regulatory mechanism. When I’m mildly uncomfortable, I can control just exactly how much I do, so that I don’t permanently (or even temporarily) harm myself. But when I’m in extreme discomfort, those filters, which I have carefully built up over many years, are overloaded. I can’t control my out-of-sync body, and I can’t control my coping mechanisms. If I were less verbal (under normal circumstances), had I been less lucky in my education, what happened last night would probably have seen me put into a full-body restraint, placed there to protect me from myself. And last night was not an exception.

Being autistic means my brain processes signals from my body differently. I process pain differently from most people as well, as evidenced from the fact that I rarely even notice pain until it’s debilitating. But when I spend 3 or 4 hours awake in the middle of the night, in so much pain I can’t find words or think or do anything other than dig my teeth into my arm in the hopes of feeling something or grasping something, or finding any way out of the hell I’m experiencing, the last thing on my mind is “self-injury”. For me, it isn’t a deliberate act of communication. It’s not a cry for help. It’s not even something deeply personal and emotional for myself. It’s my body’s way of viscerally attempting to mask the incredible amounts of pain that it can’t control. In a sense, it might fall under the “behavior is communication” – I’m in more pain that I can handle, and therefore I am behaving this way. But in my opinion, to be communication, it has to be deliberate. And this is not deliberate. It isn’t a choice. It’s the only thing I can do.

Everyone has a different take on “self-injury”. This is just one of my experiences with it. I can’t honestly say it’s my only experience, but it is certainly one that happens quite often. So what is my motive in sharing this? Well, several things. First off, it’s a reminder that just because I might seem “high functioning” at first glance (I’m a PhD candidate after all), it’s not the whole story. Secondly, I’ve shared this because I think it is important to think about how different brains work. I have no idea what motivates others (autistic or not) to cause physical harm to themselves. What is true for me is just that: true for me. But I can imagine that others may have similar responses to pain or discomfort. A large part of my autism is sensory-based. My brain doesn’t deal with sensory signals well, and pain is one that it is either “on” or “off”, there’s no real middle ground. My filters register nearly everything as “off”, but if it flips to “on”, I get overloaded. Add a bit of stress, or an auditory trigger (our bathroom fan just got replaced and it is loud and my roommate insists that it stay on all the time), and my brain gives up. I no longer have control over my body. My carefully built-up filters don’t work anymore. And all bets are off.

And on that note, it’s time for me to go to sleep. Maybe I’ll even get to rest tonight.

 

p.s. there’ll be a happy post soon too. I promise. when I get the spoons together to write it. 🙂

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Responses

  1. I get sinus headaches, and tend to gnaw on my hands and fingers to self regulate while at work while i wait for the painkillers to kick in. I’m sure it looks weird to passersby, and it definitely leaves marks that take a few hours to go away. Know right where you’re at with this!

  2. Oh wow I just blogged on this very subject (self-harm) a few days ago. My personal experiences of course. Very sorry to hear about your painful periods. It sounds horrible. I was very lucky to only experience mild pain during my periods. I get no pain since my son was born. http://disabilityableismautismandmotherhood.blogspot.com.au/2013/06/self-harm-and-autism.html

  3. I am sorry for your pain. I understand the need to to redirect, control, and react to intense pain. It is not a mental health issue, it is visceral and animal, just like you said. It brings to mind the old method of controlling pain for soldiers being treated on the battle field–they would give them something to bite on. My father who was a medic in the Korean War taught his patients to use pressure points to curb agony. He would enlist others to bear down on these points to help others who had been injured cope. I remember having my son–the pain, good grief. I respect and validate your experience. Many others on the spectrum relate to you.

  4. thank you for sharing this, E. I am sure this was a tough one to write.

  5. Thanks so much for sharing such a personal story with such honesty. I must admit that my autistic daughter’s self-injurious behaviors are the hardest for me to deal with. I keep wanting to tell her not to do that, don’t hurt yourself, if you’re getting too frustrated come ask for help, and every time she bites her arms, my heart just aches. My wife keeps reminding me that she needs to do this sometimes, and your post reinforces that, but still…it’s just so hard to watch your daughter hurt herself.

  6. This had to be difficult to share…but I am glad that you did. My son also bites when he is in pain or discomfort, and this gives me a little insight into the “why” behind it. I wish you didn’t have to endure this extreme pain 8 or 9 times a year. So sorry about that.

  7. I’m glad you shared this, as hard as it must have been to write. I have moments where self-injury (usually headbanging) is the only response that feels physically right. Mine are mostly the result of extreme emotional pain and inflicting physical pain seems to release the emotional intensity and get it down to a manageable level so I can process and communicate again. And like you, I’m someone who people would label “high functioning” right up until the moment they saw me curled up in the tub sobbing uncontrollably and knocking my head against the tile wall.

  8. E., I am so sorry for the agony that you suffer with every menstrual cycle. No one deserves that. I’d want to have general anesthesia during those times, if I were you! I doubt that that is an option, though. I hope that some day you find something that somehow works to curb that terrible pain for you!! Thank you for sharing something so personal and so difficult. I think I may now understand why my son repeatedly banged his broken hand (it was in a cast) against the floor & walls. We thought he was trying to get the cast off; but, maybe he was reacting to intense pain, as you do. It was awful watching him do that. My sister and I kept trying to stop him. He was determined to bang that hand, and we feared he would injure it worse than it already was! I am grateful that Jay’s hand is all healed– and grateful for the insight and increased understanding that you have given me in regards to his behavior!

  9. May I add this to my collection of (mostly) autistic accounts detailing our varied and diverse motivations for self-injurious behavior at http://speakingon.wordpress.com/tag/sanguinary-files/ ?

  10. That sounds like an awful experience to have at (ir)regular intervals and it sounds like you’ve tried to find a remedy – hope you do find something that can help you!

  11. I can’t even comprehend how this would feel like. (((hugs))) your way and prayers that you find some way to get rid of the pain.

    -Nicole

  12. I have done self-injures behaviors to both emotional and physical pain. I have always looked at it as a coping mechanism, I direct it to a pain I can handle as opposed to the uncontrollable anxiety or pounding, eye popping migraine. Some head banging some hair pulling which began when I was eight, I’ve attributed that to OCD too. Interesting blog. Thanks for sharing.

  13. Thanks for giving insight. I do not bite nor bang my head. Though I am certain I do not feel pain at your level. The pains I redirect are emotional to the physical. I will walk until my legs and hips are screaming, and still walk further. Or, dig or whittle. I can picture each shovel full as a tear. I have not yet processed my mother’s death. I have not shed a tear. I dig. I walk. I have yet to process a lot of past emotions . . .that resurface at irregular moments. Sorry about rambling, guess you triggered a bit of self reflection in me.

  14. Sadly, I understand all too well. People who haven’t dealt with extreme and sometimes chronic pain can’t whether they are autistic or not. I might think I was just a wimp if it weren’t for my experiences during labor. Admitting nurse thought I wasn’t in enough pain to really be in labor after watching me through a contraction. Surprise, I was 5 cm. For me a “10” is when the pain is so bad it doesn’t register but I want to cut my head off.

  15. Doctors receive little if any training in dealing with autism, especially severe autism. Medical and nursing schools are in dire need of sensitivity training and medical training in how to properly diagnose autistic people, especially non verbal autistic patients, and how to understand all autistic people’s unique sensory issues. What is remarkable about autism, as a spectrum is that the HFA high functioning autistic people often share the problem of self injurious behavior with the most low functioning autistics on spectrum, showing that there is no doubt, all autistic people share common traits that are linked to autism. I personally think the HFAutistics are the best voice and advocates for the lower functioning autistics who can’t tell people what they are feeling. Keep speaking up!

  16. Has you seen “Rain Man” have you studied the part where the character, portrayed by Dustin Hoffman, a character with High Functioning autism, suddenly presents with self-injurious behavior in the form of slapping himself in the head? The autistic character in this movies suddenly presents with head slapping when he is forced with the idea he must board a plane that he thinks is dangerous. Now, what would make a more NON VERBAL severely-autistic person sometimes present with self-injurious behavior? Could it be when they are perceiving something that they feel is a threat to their need for fixed routines? Their unspoken need for knowing what is happening? Their need for knowing they need more supports? Or more therapy? Or an increased level of care and supports? The answer is yes. Even the most severely autistic people among us, by no fault of their own, would have behavioral meltdown if forced to do something they know is not supporting their needs right? So that said, if we’ve already seen that a higher functioning autistic person will present with SIB, is it not reasonable to think that a lower functioning autistic person, placed in situations where they aren’t given proper levels of support, or are placed in situations where people assigned to their care don’t have a clue about what they feel or need would therefore exhibit more SIBs in this situation? People with autism no matter what their level of functioning are prone to self abuse, so it’s up to us who are able to adequately speak for them, to advocate for the supports and services they need to be safe and healthy and live a more productive life. IF that means, in certain cases, that the level of support would be round the clock care or round the clock nursing care, based on their individual needs than why aren’t the autism experts and all the agencies in charge of delivering services for autistic adults, advocating for them to receive the supports they need instead of forcing parents to go before administrative law judges to get the services they so obviously need?


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