When I began writing about the actions many take that are labeled “self-injurious behaviors” I had some ideas from my past of self harm (bulimia, anorexia, compulsively overeating, etc) about what that might be like. When my daughter began biting her hand and arm, punching herself in the face or chest, I knew I was seeing something different, but there seemed to be enough of an overlap that I felt I had a small degree of insight into her experience. But there is a difference between self harm and the actions many take to mitigate external pain such as cluster headaches and the pain brought on by a variety of sensory issues. Others have described the action of biting, pinching, head banging as a way to center themselves, they describe the calm they feel afterwards and many describe a sense of relief as well as others who say they are able to make sense of space and where their bodies are. Many described how when the underlying source was treated the desire to bang, punch, bite went away.
Anonymous 1 (who I quoted in yesterday’s post) said, ”When I bashed my head, though, the screaming stopped. It just cut off, and then the pain spread over my entire scalp, like a blanket over my brain.“
I couldn’t stop thinking about this sentence. So I reached out to ask for more about the “screaming”. Anonymous 1 responded:
“I can hear shapes and colors, and sometimes I feel music in a very literal way. Like, slow adult contemporary stuff my mom plays makes me start itching and it makes my clothes feel too tight. The scream in my head works the same way. When I’m having a sensory day, it starts wailing away and makes it hard for me to maintain emotional equilibrium, until I lash out (either through SIB or by becoming verbally abusive to people around me). Similarly, if I’m put off emotionally by something, like someone being selfish, then the scream will start up until I’m scratching at myself and teasing the broken bones in my hand just to give myself a pain-stim that will shut it down.
“If I had to describe it, I would say that emotions are a sense, in the way that sensory issues work for me. They mix with the other senses, bleed into them synesthetically, and the integration issues for both emotions and sensory input have exactly the same process in my head. The act of both of them happening at once, where I can’t focus on just one or the other, produces the scream. Some days, I can clamp down on it and keep it in my head. Other days… meltdown. SIBs. Crying. Fighting with family.”
Anonymous 4 wrote: “I like to bite my arm. I know. It sounds weird, but I love the feeling of the shimmery yellow and blue and white sensation that flows down my arm. There is nothing like it.”
When I read this I thought about how easy it is to assume we understand until someone describes their experience and it is very different from what we assumed. It seems to me this is an important piece. I know Anonymous 1 and 4 are not the only ones who have this experience with synesthesia. Judy Endow discusses how she perceives words through the sound and movement of color. I have heard others describe variations on this as well. If ones neurology finds meaning in spoken words through movement, sound and color, it would stand to reason, emotions and sensation would be perceived this way as well leading them to do things that might cause those witnessing it as something to be stopped. I have to wonder how many, who are in the field of Autism are hearing these kinds of experiences. So much regarding autism comes from those witnessing it, people who want to understand, but whose own neurology may make it very challenging, if not impossible, for them to do so.
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This is such an incredibly important conversation. Thank you for sharing insights from people who experience this first-hand. I don’t know why it is so hard for professionals to understand that the adult autistics are the most important resources we have – we need to listen to them!
I don’t either. It’s one of the most bizarre things about the field of autism!
Full disclosure: I am a “professional” – but I’ll admit this field is a mess. Only the “researched” methods of intervention are funded, but the basic premise of special education tells us to provide each person with an individualized approach that meets their needs. How is that supposed to work?
I’m really glad I found your blog. I hope to learn a lot from you and your readers!
Ha! Even when the “researched” methods do not allow for that!
Julie, it’s nice to meet you. We’re all learning!
Julie, as an adult on the spectrum, I’d like to thank you for listening. 🙂
Emotional pain is very tangible to me as well. I can certainly relate to the screaming experienced by Anonymous 1. I have extensive nerve damage from an accident that causes me fairly constant pain. Certain touches will trigger greater pain, and I sometimes do that to myself to drown out the screaming. I’m also an avid motorcyclist, and one of the things I love about it is that it is a very intense sensory experience, but something about it makes it easy for me to focus on and process. I will even ride in conditions that inspire people to tell me I’m crazy. The sting of rain hitting my face at 50-60 mph or the bitter cold of below freezing temperatures plus windchill are quite capable of drowning out the screaming, at least for the moment.
Hey Carlyle – thanks for sharing this.
Thank you for providing these important perspectives. I think it’s so easy to make assumptions about the behaviors we see and to simplify the explanation behind the behavior. Every person’s neurology is unique. Inviting people to share, as you have, provides a window into their experience and teaches us to open our eyes a little wider.
Thanks so much Trisa. I’m really grateful to all the people who’ve reached out and shared their experiences.
Oh, wow! What Anonymous 1 said … All my life I have “smelled faces,” and thought it was strange/interesting because I have prosopagnosia so I can’t *recognize* faces but I can *smell* them.
Then I told someone their face smelled “difficult” when I saw them on Nightline and they were stunned and said they had been going through some medical problems at the time and no one, not even those closest to them, had picked up on that or mentioned anything about the Nightline appearance. But I picked up on it right away, even though I always totally fail those “what emotion are these people experiencing?” photo tests.
A little more digging, and I found a very rare form of synaesthesia called personality-to-smell synaesthesia that occurs in a fraction – like around one tenth of one percent – of people with synaesthesia. In combing the synaesthesia forums, I have only found three other people who say they smell faces like that.
Now Anonymous 1 says “If I had to describe it, I would say that emotions are a sense, in the way that sensory issues work for me. They mix with the other senses, bleed into them synesthetically, and the integration issues for both emotions and sensory input have exactly the same process in my head.” and I’m over here flapping with excitement because it sounds so very much like what I experience! I don’t smell faces and I don’t smell personalities; I smell EMOTIONS. That makes sense!
And it’s really strong and overwhelming to me. There are people I can’t stand to be around because they just *STINK* and it’s real and physical and nauseating, but it’s got nothing to do with their body or their hygiene because I can smell them on television or in movies, too.
Like . . . I have the autistic alexithymia thing going on so I don’t pick up on emotions, not even my own, but somewhere in my brain I’m “seeing” the emotions anyway but my brain is converting that information to scent?
And it took a long time for me to realize that it was even A Thing, because I just thought that was how people smelled and it never occurred to me that it was strange that I could smell people on television until the day someone was joking about “smell-o-vision” and I realized that not everyone sees …. or I should say not everyone SMELLS …. the world quite the same way I do.
….. very off-on-a-tangent from your topic, Ariane, but you did say a day or two ago that you welcome all comments, even those that don’t answer any of the questions you are actually asking. So, be careful what you ask for. *g*
I LOVE reading your comment! It’s wonderful to hear your experience, though I’m sorry you have to put up with awful smells.
This was a great post. SIBs feels very differently from self-harm, what causes it is different, when it’s SIB I feel like I’m screaming inside or just a painful humming, I only think about harming myself in what is described as SIB when there is an overload, when the sensory world is too much or painful or when I need to communicate but can’t and that’s not respected, it’s caused by emotions but different kinds, at the same time I think about self-injury all the time, it’s an addiction and I do it when other types of emotions are too much or more often when I dissociate.
I wish more people listened to us about this and respected, there are “treatments” that try to force people to stop just to make others more comfortable but ignores why someone does this and how to help that person, not just stopping and making the person feel worse, there isn’t much respect for people that harm themselves in any way.
I wish people would listen to you too! All of us would benefit if they did.
You are an awesome person.
I think the same of you!
So interesting. I love this post, the comments really open my mind. I hope my daughter is able to articulate her inner self so eloquently when she is an adult. As an artist I thought it was something to be able to draw from memory or see 20 shades of blue when I look at the sky, but smelling emotions and feeling pain in colour is a really cool trick, wow!
20 shades of blue… how fabulous!
The two descriptions you have here are very similar to some of things that I experience, and I think you are correct that those working with autistics do not understand how we perceive the world. Part of the problem is that we ourselves many times never realize that we are experiencing the world different than other people.
I have always assumed that everyone can feel the words that people say. When I mentioned this is casual conversation with my doctor he stopped me dead in my tracks. He had never heard anyone say they could feel the words, and I thought he was nuts! “What do you mean you can’t feel the words?” I asked him.
I mistakenly assumed that everyone felt the vibrations when people around them spoke. Some words are smooth and soothing, where other sounds are like scratching your fingersnails across the blackboards–and oh dear, what it sounds like when more than one person is talking at the same time. Standing in a crowd of talking people makes me want to slither down to the floor and scream!
I’ve never mentioned any of those “odd” ways that I perceive the world because I assumed (here my theory of mind deficit) that if I am hearing the sounds, and feeling the words–so are you. See the problem?
You mean they CAN’T????? XO!
Thank you for sharing! Incredible information. Parents, providers of services, and educators, desparately need to look beyond the obvious when it comes to SIB. I’ve always believed SIB provided something “curative” or helpful to my son because he seemed to never hurt himself through these behaviors. Quite the opposite. He seemed to feel better, so I never tried to stop him. Thanks for the information on smells! I’ve alwasy been a “sniffer” of people myself (when hugging them). My son used to identify people by smelling their hands. I find this subject fascinating and would love to learn more. I truly appreciate those with ASD sharing their perspective!
my sensorys tell me YOU have often self harmed and YOU have been very anorexic .I AM A ADULT WITH ASPERGER SYNDROME.MARRIED 13 YEARS ,WE HAVE 3 CHILDREN.i have NEVER self harmed.but i have in the past been very very anorexic… i all so have ..M,E, and lot health problems.if you would like to ask me any thing please do.i often get your interesting blog.my e.mail is… markkent1962@hotmail.co.uk
mark
Mine is more of a question. I’m a single mom of my amazing 3 and a half year old daughter. In the last few months a lot has changed dramatically in our lives. My dad passed away from cancer. We traveled across the country. We’ve moved twice. And most of what we call her people are no longer a major part of her every day life. We recently moved in with a good friend of mine and her father and her year and a half year old daughter. In the last few weeks my daughter has started having complete meltdowns. Crying at everything. Then she started pinching her own face. Whenever I’m not in her site. If I go outside to smoke I come back in and her cheeks are beat red and swollen from the pinching. I ask her why. She says I don’t know mommy. I just love you so much.
What may be causing her to do the pinching. How do I get her to stop. How do I fix it. It breaks my heart. I don’t understand.