My friend Ibby posted this video on her Facebook timeline (for those triggered by loud noise, flashing lights and/or prone to seizures, do NOT watch or at least turn the volume way down and stand back)
A twitter friend, after I reposted this video, wrote that this was why he wears headphones and I tweeted back that while Emma is sensitive to some noises, for the most part she craves noise and typically turns the volume up as loud as it can physically go on both music and favorite movies, much to the horror of our various neighbors. Even though we live in New York City (a place that is, for many, a sensory overload), people get cranky when woken at 6:30AM on Saturday morning to the strains of Michael Jackson’s Beat it. Even hard-core MJ fans protest at the volume Emma prefers and at that time of day.
My twitter friend tweeted back, “I like certain noises, Avenge Sevenfold. ;D It’s noises other than the one I’m trying to focus on that are the problem.” And this is exactly the important distinction that I often forget or have trouble understanding. Unless you have sensory issues, like the ones depicted in this video, I think it’s really hard to fully understand how debilitating sensory overload can be.
A couple of months ago I went to do our weekly grocery shopping run at Whole Foods. Typically I go every Saturday in the early afternoon. This is a time that isn’t too crazy, the lines aren’t insanely long and often it’s even comparatively quiet. As I stood in front of the check-out person, the cashier next to her began loudly unfolding a paper bag. The noise was deafening, a kind of snapping sound followed by crackling. I actually felt physical pain from the noise. My cashier looked over and laughed and then another cashier did the same thing with one of her bags. In response the first guy did it back and suddenly I was in the midst of a cacophony of bags being banged opened, like a series of gun shots going off. It was horrible. I stood there stunned. I became so disoriented I could barely think and then I felt a surge of rage. How dare they make this kind of noise with those paper bags! How dare they behave this way! I looked around trying to figure out who I should direct my anger to and noticed that not only were they smiling, some were even laughing and so were the other customers.
They were having fun! I was astonished. What was so incredibly painful to me, was amusing to others. As I left the grocery store I reflected on sensory issues and how overwhelming they can be. I thought about Emma and wondered what it must be like for her. Does she feel this way when she needs sensory input and cannot get it or is told she must turn the volume down? I know there are certain noises she cannot tolerate, like the cuisinart. She hates the sound it makes and will only tolerate it if I allow her to control it and put it on “pulse”, the same goes for the electric mixer. If one of us sings along to music she’s listening to she can’t stand it and puts her hands over her ears. (I completely understand her doing this when I sing, I’m pretty much tone-deaf and it IS painful to listen to for even those with no sensory issues, but she does this to anyone who sings along.)
After watching the video I posted above, I was grateful for the ending. Not because it changed anything or showed some obvious solution, but because it was one human being taking the time to notice another human being in obvious pain without judgment or condemnation.
As an aside – I would love to hear from those who need and crave sensory input. What is that like? What does it feel like? Is there anything you’ve done that has helped you. Any advice or ways we can make your life more tolerable during those times?
Emma – 2007 – Auditory Integration Therapy
Emma's Hope Book 
Wow!!! This one is big time in our house. I get overloaded quickly! And my daughter needs to make noise a LOT! But I have noticed if others make the noise it is too much for her. She is very very strained to stop making the noise even if I tell her I am trying to hold it together but I need her to stop for just a few moments to get the “heated upset” feelings together she will try but it isn’t something she can really stop at will. I tell her I have to walk away for a few but it’s not her.. It’s me. I am over loaded and she isn’t doing anything wrong, I just am full and can’t take it. But if her brother is doing the same thing when she is not she will quickly shoot him a look and ask him to stop. I can’t wait to read some of the replies you will get on this one. Would love more knowledge on it!
It’s interesting that the preponderance of material out there is for hypersensitivities and not hypo. For years Emma was put on a “sensory diet” at school, but truthfully, I’m not sure it improved her sensory issues, more helped her manage and get through the day (which was HUGE and well worth it).
What is a sensory diet?
Her therapists worked out a schedule for her, where every 45 minutes she was allowed to take a break and go to the sensory gym. She craved movement so much she couldn’t sit still, this has abated somewhat as she’s gotten older. But she would go to the gym and twice a day she had yoga or some form of movement and breathing, she also did brushing and joint compressions at least once a day, for awhile it was every two hours I believe, can’t remember any longer!
great post 🙂 a few months ago zack and i both did auditory integration training. It was Zack’s second session and my first. Our tests afterwards showed remarkable change, Closer to average than before (i was involved go a car accident last year, and one of the side effects can me improvement of memory, and zack is particularly sensitive to some sounds, and insensitive to others)
it was a very interesting exercise, gave me a small insight of what sensitive hearing must be like!
Zack has been much calmer afterwards both times, although a more noticeable difference the first time.
Yeah, Em did AIT for a long time, I can’t remember how long anymore, but close to a year. It’s hard to know whether it did much, but as others have pointed out, perhaps her sensory issues would have been much worse if we hadn’t done it.
I hate listening to people sing along to music I’m listening to as well! I also listen to music at home louder then my younger brother would like. I work in a place with an open plan office area and lots of noises, if I didn’t have my headphones and my music then I would curl up in a ball very quickly. I get distracted by quiet noises. I find loud noises and in particular layers of noise are to my ears what looking into the sun is for my eyes.
Hey really appreciated your tweet, as you can see it inspired this post! And I don’t think I’ll ever forget the story of you “trimming” your parent’s shag carpet! 🙂
Wow, that was really overwhelming! I can only hope Risa isn’t that sensitive. It’s hard to say since she can’t tell us. What we do know is that she adores her music loud, and prefers hard rock. (Metallica is her favorite band, no joke!) She likes being “cocooned”, she likes deep pressure squeezes all over.
I myself have had some of my worse panic attacks when at a busy store – I can’t tell you how bad a Walmart trip can be for me! Risa used to be bad with crowds, and sometimes still is. She tolerates it ok now but I really try to avoid situations I know will set her off, like the wedding reception I went to last weekend.
We did try to do therapuetic listening a few years ago, and the headphones used she didn’t like, but will tolerate them now. Go figure.
The world can indeed be a sucky place for those with sensory issues!
I hate crowds! I know… New York City and all that… but Richard is fine in them. As I’ve gotten older I am definitely getting more sensitive to sensory stuff. I’m also much more aware of things that I never was because of Em. I can’t tell you how many times I’ve heard older Autistics talk about behaviors that made no sense to anyone, but that were because of some overwhelming sensory stimuli that no one noticed or understood.
PS Hi Angie! *Waves*
Wow. Kinda looking back on Ted’s childhood and thinking, just how much did I miss??? I don’t really know if he has sensory issues. I know he has tactile issues. As far as auditory, all I remember is HOW LOUD HE WAS! Good grief, we used to joke that there was a loud family that had our quiet child, because both my husband and I are quiet and we obviously had their loud child and our babies switched at birth!!! 🙂 Now Ted just blocks out most outside stimulus and controls his environment. He wears earphones and listens to music almost the whole time he is awake. I think, as a child gets older, they instinctively know and seek what they need to cope. I hope.
I’m so curious, when you discuss with Teddy all the hell he went through being put into “behavior” classrooms and the like, does he ever mention the sensory stuff as an issue? Just curious about that.
By the way, please tell Meg, “good luck” with college admissions. I have a feeling she’s going to do very well with all of that!
I will ask Ted specifically about sensory issues. When I ask him about school, particularly early on he says he really can’t remember. Once he said, “I was out of my mind.” Recognizing he was unable to control himself a lot of the time, but also there was a detachment, he thinks for coping. It is my belief he has blocked most everything out and honestly, it is why we have let him have a couple of years at home, away from the world, I seriously believe he needed to recover from all that was k-12. In high school, which I haven’t written about, he mostly slept through his day at school. He will freely admit, that was a coping mechanism. I will go talk to him about the sensory and let you know. And thanks about Meg. Oh my the drama of college admissions. She almost has all the applications done and then there will be peace. Well, until the letters start arriving!!! 🙂
I have tremendous respect for your parenting. I do not doubt for a moment that T. needs “time off” without pressure, without expectation after all he’s been through. I applaud you for giving that to him. He will find his way, of that, I have no doubt. I have a feeling it may well involve advocacy of some kind… but whatever it is, the world is a better place because of him.
Talked Ted sensory stuff with Ted and this is his feedback. Now as an adult not many things bug him. He doesn’t mind crowds, noise or smells. The only thing he can’t stand, what he said drives him nuts though is the sound of styrofoam. He also does not like sunshine. He much prefers grey days and loved being in Seattle. Now when he was younger, elementary school age, he didn’t like noise. The lunchroom was difficult. He said by high school this was no longer a problem. Also when he was younger he had a very picky diet. He didn’t mix 2 foods. No condiments at all. Now he has a varied palate and loves spices and condiments. He also then and now does not like buttons. He much prefers soft, loose fitting fabrics and t-shirts. When he was in high school he wore the same thing every day even though they didn’t have a uniform. He created his own. Jeans (because they couldn’t wear sweat pants) a plain white t-shirt and a grey hoodie and flip flops. Didn’t matter the temperature, it could be 90 or 30, he wore the same thing every day. I hope this helps. If you have any more questions ask away. It was interesting too for me to revisit. All my best. Charlotte.
I have synesthesia of the auditory/visual variety. Not the pleasant kind that gets described by some where it somehow enhances auditory experiences but a jarring kind. Sudden, unpredictable noise creates lines with shape across my visual field. Noises above a certain frequency do the same. Depending on how I am already coping the threshold can move a bit. Plus I am hypersensitive to sound as it is. I know 10 minutes bofore the sound technician that there will be a problem with our sound system. Sometimes for reasons that are not clear to me everyone else seems to think it is fixed and I know it is just building again.
Tactile ones are in some ways more awkward socially though. While it isn’t great if you are drummer that if someone repeatedly hits a note that is both high and off key you wind up grabbing your ears and ultimately fleeing your stool it’s harder to deal with the unexpected. At Hebrew class they serve tea in a styrofoam cup every week. I abhore the texture of styrofoam.Thankfully non of my classmates fidget with their cups or I could not return. I take it gingerly as the notion that a hot beverage is useful for prononunciation isn’t entirely incorrect with Hebrew and sometimes I have something to dump it into but it is those small never even thought of barriers that are the issue.
I cannot touch dry wood. At home if I have a utensil with a wooden handle I simply make it wet but you can’t exactly plunge your chopsticks into your water glass without getting a look or two.
Years ago I wrote about the ways in which kindergarten was torture for me and one of the things I mentioned was the low grade paper for art. Everyone has different sensitivities but they are so frequently overlooked as potentially contributing to a problem. Even if someone is only somewhat mildly hypersensitive to something but other stressors have come along to me there’s a sum total of everything I can cope with until I can’t cope. Usually given the choice I prefer not to add coping with something horrbile feeling, tasting, or sounding to the mix.
When my life fell apart in January I stopped being able to eat. Not first as part of a depression because my sensory issues also impact food. Over time I could tolerate less and less food and since I was coping badly I also didn’t have the executive function needed to remember to eat so it just created a loop until I couldn’t eat at all.
I tried Auditory Integration Therapy when after another major change related catastrophe in my life some people from Ease sent me some cds and games. I can’t say it helped much but it may have if I persisted I don’t know. I did try for a number of months.
It sounds really tough. I know how upset and angry I was in the grocery store with the cashiers making a game out of snapping open a great many bags in an exaggerated way. Had you been standing next to me and telling me something important I would not have been able to hear you, let alone remember anything you were saying. In fact I think I would have found that added noise an irritant that would have increased my rage! What I loved in the video was at the end where the woman acknowledges the young person’s pain. That’s the world I want to live in, where those who are not in pain or in crisis can show loving compassion to those who are. It won’t take those challenges away, but it might just make the pain a tiny bit less horrifying and lonely. ((((Gareeth))))
Sensory cravings tend to feel like my skin is detaching itself. Usually, I can bite myself or something similar and make it reattach, but if, for whatever reason, I’m prevented from doing so, the detaching feeling mounts into an overpowering dizziness. That’s the best way I can describe it.
It sounds horrible, adkyriolexy.
The best way a person who is with you could help would be to NOT prevent you from biting yourself… is that right?
I think about this all the time, because of Em, because of my own past and history with self injurious behavior, because of how SIB behavior is often depicted and seems so completely misunderstood. I’d love more insights on this, if you care to discuss. What are things others could do that would be seen as helpful when you are feeling this way? Do you prefer to be left alone? In an ideal world what would others do or say, how would they behave? I’m not assuming others could do anything about the sensory cravings (if that’s incorrect, tell me) but are there things that others could do in those situations that might be helpful?
Yes, the best option is to let me bite away. Sometimes that may not be enough, but generally, any kind of intense pressure or impact on my skin will alleviate that skin-is-detaching feeling. Sometimes the skin-detaching-feeling comes on its own with no discernible cause, but sometimes it’s prompted by a sudden temperature drop, or the wrong kind of air blowing on me (there’s a right and a wrong setting on fans, and the wrong kind is very, very wrong), or stress or anxiety (anxiety = skin constricting/goosebumps = skin-detaching-feeling). Walking around also helps.
The preferable response is to leave me alone and let me do my thing without expecting me to think, speak intelligently, or answer questions during the process. I can pick up where we left off in conversation afterward, but other topics must be put on hold while I prevent my flesh from escaping.
Yes I don’t think enough is said about the whole what to do when you seem to be afraid about where the boundaries of you are. I mean that is how it is for me anyway. I used to think (since you are always beating yourself up about the things you used to think that were “wrong) that some of the sensory solutions were hogwash. Yet when a friend made me a weighted blanket it had an almost immediate benefit as far as sleep goes so then I was open to some of the other stuff.
I know when I have the feeling I might lose myself or whatever it really translates into it things like running my hand a long a chain link fence or rolling down a hill (now a wee bit impractical) have helped without crossing downright into SIBs. Most of my more extreme SIBs actually don’t come from this asoften as other accute distress although that feeling can be additive for me. Actually identifiable SIBS usually sneak up on me a bit and then I think hmm things might be worse than I thought.
I have an article that adresses my thoughts a bit on this., Well SIB comes up in the whole context of why eliminating autistic behaviour isn’t a cure. If the SIB is harmful then ideally it would be shaped towards something that serves the same function but won’t do permanent harm.
My doctor tried to lump all SIBS in one category and I had to tell him nope. I have a very Germanic skull. If he wants to make out like spontaneously slapping myself in the head in a minute of extreme stress is in the same league as repeatedly bashing my head into a concrete wall we won’t get far.
My degree is in psychology and SIBs come up over and over as an area for remediation without a single article ever hypothesizing they have a function. Much like pretty well any other “too autistic” seeming behaviour but actually damaging SIBs really ethically you do have to do something about. I like my brain so if someone actually saw me repeatedly pounding my head into a wall I wouldn’t expect them not to intervene.
For myself I found that for that kind of thing better awareness in the build up phase helps. So in your situation where you are the parent observing the signs that stress may be building to the point where a more injurious SIB could result and providing something similar but not damaging. Rolling down a hill, resting my head on the window of a bus and letting it rattle along, running my hand along a fence, stimming versus SIBs etc… What works for Emma you would need to find out. A child has different options than an adult.
I would love to read more about these kinds of issues that others experience and what has eloped them. I had to have a tooth bonded yesterday and he didn’t give me much novacaine, which was fine, I really hate novacaine, so I didn’t tell him I could feel him drilling. To deal with the pain I dug my fingers into my hand. When I left the dentist I noticed blood dripping from my hand where I’d broken the skin. I thought of Em, because to control the pain is so much better than dealing with it on its own or when it comes from an outside source, though I don’t know if this is how Em feels it.
This is all so interesting. I can relate with this. I find it very hard not to stop my daughter when she is scratching a line of skin off of her face or hands in responce to anger and over stimuli. She says she needs it to feel better but wishes she wasn’t leaving marks. Some deep some not so deep. I have been try to work with her to notice before things get that way and it is her only way out. So she can feel better with drawing or reading and not having to get too far. I would love to hear more from people. Thank you for posting this.
That’s tough, Barbara. Is she able to find substitutes that work? I haven’t personally. Outside pain, I always deal with by creating a more intense pain to distract me. I chew the inside of my cheek sometimes too.
It may help to remember that things like skin-scratching have very, very little physical risk. I wrote some blog posts about self-injurious behavior that you might like: https://speakingon.wordpress.com/tag/sanguinary-files/
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Great post, and I really liked the video (even if I was jumping out of my skin the entire time… well, I was warned!) Personally, I struggle with sudden loud noises (fireworks being the biggest problem, but at least that’s mainly a seasonal thing!) or loud irregular noise (e.g. lots of people talking over each other) but music is fine; having said that, though, my MP3 player rarely goes above half-volume, there’s no way I could listen to it on full all the time like most people do.
I also don’t like crowds (and the noise that accompanies crowds) very much, particularly in enclosed spaces. At a recent party, I myself literally backing into a corner and staying there even though in terms of the physical space available, I didn’t really have to. No idea why!!
As a former special educator, I always decorated my classrooms with an eye towards materials that were relevant and age-appropriate without overwhelming my students with too many decorations or too much vibrant color. I also shared my insights with my colleagues if I felt that they were going overboard or if one of my students seemed uncomfortable. Several of my colleagues were shocked by these insights, but that’s what the special educator is there for in collaborative settings (especially at the secondary level when general educators are more likely to be content specialists).
In my own life, I find that I dislike crowds, frivolous conversations, parties, loud nightclubs, and florescent lights. I hate people talking to me when I’m trying to read (on of my main relaxation / coping skills), watch a favorite TV show, or just be alone. I love the positive impact that I have on my students but the effort of nonstop socialization during the school day is both physically & emotionally draining! I absolutely hate being rushed, especially when I’m in my zone. Finally, I crave music while writing research papers or grading student work, and either crank loud metal or alternative for energy or smooth it out with folk when in my happy place.
I’m a little late to the game on this one, but I just wrote a post about this very thing…with an example of exactly how it can happen for me. The Uncounted Costs of Sensory Sensitivity — http://www.psychologytoday.com/blog/aspergers-diary/201301/the-uncounted-costs-sensory-sensitivity
Thanks for the link to your article Lynne!
It’s always good to hear from you.
Brilliant post! I have such bad sensory issues, that my husband knows we will have to move our seats multiple times in a movie theater if someone dares eat popcorn behind me. I also can not be in the same room with someone who is chewing gum and often have to leave church if I can hear it near me. My sweet NT daughter is actually protective of me and sits between me and any offenders in the hopes to of blocking these people before I notice and my poor husband has mastered the art of making ZERO noise when he sleeps in order for me to stay in the bedroom with him.
My autistic son is the EXACT opposite, he craves massive sensory input and we often clash because of this. I need it quiet and he needs it loud. I’ve found that both our sensory issues are exasperated by anxiety. So I spend a lot of time trying to relax: yoga, green tea, meditating, deep breathing, l-theanine, Vitamin D, carbohydrates, and elimination of coffee and wine seem to help the most for me.
My daughter craves sensory input as well. Loud music, loud movies, loud, loud, loud! I think the need for relaxation techniques is crucial. Em loves yoga and does breathing exercises when stressed. It helps both of us.
I’ve found this strange. I have Asperger’s Syndrome and some times like the over stimulation of flashing lights. There’s something about Nine Inch Nails video for Came Back Haunted my brain really likes, even though it’s considered one of the worst videos as far as visual over stimulation is concerned. So I’m like, well isn’t this harming my brain, or maybe it’s some pattern in the video created to elicit a sense of euphoria. I do remember finding the lights on cop cars hypnotizing as a kid, maybe the red flashing reminds my brain of that.
Well enough over thinking it. I just find it strange something that could send another person’s brain into a complete tailspin would make my brain happy. Then again, there has to be a reason flashing lights are so popular at raves.