How Do You Get People to Understand Sensory Sensitivities?

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catlady2323
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06 Jan 2012, 12:07 am

ValentineWiggin wrote:
Last week, my mother criticized me for having to leave an extremely-crowded restaurant with a screaming baby where we were waiting for a table.

How do I get them to understand that those types of things physically hurt me?


I cannot tell you how many times I have left crowded and/or noisy places ! ! They DO physically hurt. I read a lot in the area of neuroscience, and ran across an article showing that the cells throughout our body respond to noise, not just the cells in the ears. I have always felt physical pain all over my body from loud noise. Apparently my cells are hypersensitive to noise.

I have 3 neurotypical young adult children, and it has taken me years to find a way to get them and others to understand what sensory sensitivities feel like to me. This is the example I use:

Imagine if you lived with bees. Wherever you went the bees went with you. When I am in my quiet home the bees are sleeping and don't bother me. But as soon as I leave my quiet home and venture out in public, the bees wake up. At first they just "buzz" around being annoying. But the longer I am out in public the madder they get. Pretty soon they start stinging me, and if I stay out long enough, they all start stinging, till I am overcome by the pain. I have to go home (or someplace quiet and dark) to decompress from the pain.

Now the pain I feel is not literally like a bee sting, but the pain is real none-the-less. It becomes more intense the longer I am out and exposed to sensory stimuli.

Another example I use is to ask the person if they would be able to function if someone followed them around lightly punching them in the arm all day long. Because that is how it feels when the noise is persistent. Constant noise (like a baby crying) feels like being punched in the stomach to me. Not a pleasant feeling.


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catlady2323
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06 Jan 2012, 12:22 am

Ann2011 wrote:
It's so frustrating! Yesterday I saw my counselor and I was talking about a situation where I was in an auditorium and the hum of the vent system was making it impossible for me to focus on anything else. He looked confused and asked me to explain. When I said the sound was hurting me, he looked at my like I was from Mars. Scheesh - he's my counselor for goodness sakes and he knows I have Asperger's, but he just didn't understand at all.


I can't tell you how many times I have been overwhelmed and distracted by a noise no one else seemed to even hear. I have now gotten in the habit of asking those with me, "can you hear that noise?" More often than not they either say "no" or "gosh now that you mention it yeah ~ but it isn't bothering me".

I now routinely wear musicians ear plugs when out in public. They drop the decibels of all sound by -20dB yet retain the clarity so you can still understand conversations just fine. It isn't perfect, but it does help.


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catlady2323
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06 Jan 2012, 12:26 am

seaside wrote:
I've had the thought of making and youtube-posting a little video... where normal everyday stuff is going on, including a person talking, but then the volume for intrusive sounds (clock chiming, etc.) is way up in comparison to the person talking, and then the lighting becomes incredibly bright and flashing, and somebody else starts talking at the same time, and then through all this at the end the person talking asks what is wrong with you for not digesting what they are saying or looking distracted! .... (For ideal effect, viewers should wear sandpaper and put out a dish of smoked mackerel (pungent smell) at the same time... !)


Great idea ! :)


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catlady2323
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06 Jan 2012, 12:48 am

TheygoMew wrote:
Show this video make sure they have headphones on with decent amount of volume if not the loudest setting.


[youtube]http://www.youtube.com/watch?v=plPNhooUUuc[/youtube]



Great video ! No wonder NT"s can get so much done ! I wish when I walked down the street it was that quiet.

The Aspie part is exactly how I experience walking down the street in the small city where I live.


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catlady2323
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06 Jan 2012, 1:08 am

phaerie wrote:
Wow, holy shiz. I've never heard so many others talk about the same thing as what I go through...firstly. THANKS!! !. *breaths out heavily* 8O

I have a question.....I am very non tolerant to shopping centers and things like movie cinemas and most of all...resturaunts.
These things are physically painfull and shattering for me- even though I try to fight it -. When my alert system tells me to "get out" I feels like an autonomic seizure. I get physical sensations in my head and feel kind of wonky as if my system is malfunctioning...its scary however as soon as I go to a calming place...it eases.

Does anyone else get anything like that? :oops:


Yes I get all of that. I cannot tolerate shopping centers or movie cinemas and most restaurants. Any busy noisy environment quickly becomes overwhelming to me, and I just have to leave. When I go to a "calming place" (well said) it does ease for me also.

Have you had your hearing tested ? It is possible to test for something called your Loudness Discomfort Level (LDL). Those with normal sensitivity to noise can easily tolerate 100dB of sound. My LDL is 50dB, about the level of quiet conversation in a home or the library. Anything above 50dB starts becoming first annoying to me, and then down right painful as the noise gets louder.

I have found wearing -30dB foam ear plugs helps somewhat when I need to do something like run the vacuum cleaner which is near 100dB. I also use -20dB musician ear plugs when I go out in public and need to carry on a conversation. They allow for hearing clarity while reducing the overall noise by -20dB.


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Aspie Score: 137 out of 200
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Diagnosed "genuis, borderline autism" at the age of 24 months
Level 1 Autism DSM-V


HollySue
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17 Jan 2012, 6:38 pm

One of the most useful things that I have ever learned is that it is impossible to make someone understand something if they are predisposed not to.



kookiefool
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02 Feb 2012, 1:39 am

I watched the video and first had to laugh because as I was watching the neurotypical part, it was getting me very anxious because it was too low!! !! It was like I had the TV on with no sound at all. Tells you what I'm so used to as "normal" sound. Yet the second half to me still felt too low, enough so that it was also uncomfortable because it just didn't seem right.

But I will send it around to those who maybe, just maybe, might glean a little understanding from it.

"The Others" never understand when I try to explain to them I actually feel my hair. A little too long or short is so miserable I can hardly stand the weight of it, or lack thereof.

And some noises, like the little girl who lives across the street from me and for some reason can only scream (I have never seen or heard her talk -- she just stands outside her house and screams) literally make me nauseous, as do the rumblings of the stereo base of other neighbors.

I have gotten some to at least start to become believers by asking them if they hear a certain song on a radio, which, of course, they don't, until the car in question, which had been a good block away or more, suddenly drives up next to us and then they hear it.

That often gets the idea across.

However, one other example I found was in the movie Sherlock Holmes with Robert Downing. There is a scene near the beginning where Sherlock is sitting in a restaurant waiting for Dr. Watson and Watson's squeeze, and he begins to look around the restaurant. He not only begins to focus in visually on a number of different scenes in front of him, the movements, the people, the sounds begin to get louder and louder and with the resulting din, in some ways all together and in some ways all separate sounds at the same time, it is so much like how I experience public places myself. Interesting scene that I recommend if you haven't scene (bad pun) it.



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05 Feb 2012, 5:13 am

It's called respect.

I'm thankful to have grown up in a family who has sensitivites and understands that everyone experiences things differently.

So for me to hate dogs barking, or my mom to hate flashes on cameras, or my nephew to meldown during a fireworks dispay, or my cousin sniffing everything in sight is just what makes us..us.



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18 Feb 2012, 7:39 pm

This is my first foray into anything remotely Aspie. I've suspected for a while, but nowhere to go with it really. I'm stunned at this discussion and have joined this group because of it.

I'm in my 50s. All I can say is... other people don't find alarms, slamming doors, crowds, sirens, bright lights, trying to listen to someone in a crowd, loud music, traffic noise, or anything else that was mentioned, NOT painful? I can't begin to imagine how it's not painful to others!

I had one friend who understood and who lived in my house for a while. Sadly he died a couple of years ago, but his sister was an Aspie and I'm sure he was too. He perfectly understood not to talk to me at all for at least an hour after I woke up, or if he had to, to speak quietly. He understood not to pull the curtains open when I wasn't prepared. He understood that when the smoke alarm died, it needed a battery change immediately. He understood that noise from neighbours drives me nuts. He understood that I need lots of alone time... processing time. He understood so much. The list is endless. Very few people in my life have understood and yet I keep saying it's the basis of my panic attacks (largely under control at the moment).

I'm very happy to have found others who experience the same as I do.



skribble
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01 Mar 2012, 9:39 am

million dollar question i've had on my mind - the sensory overload.

i dont have time to read through the thread now so i'm posting this to 'be part of' the thread first and get emails for any responses.

Cheers and love,
skribble ;)


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Nier
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01 Mar 2012, 3:44 pm

soozzi wrote:
This is my first foray into anything remotely Aspie. I've suspected for a while, but nowhere to go with it really. I'm stunned at this discussion and have joined this group because of it.

I'm in my 50s. All I can say is... other people don't find alarms, slamming doors, crowds, sirens, bright lights, trying to listen to someone in a crowd, loud music, traffic noise, or anything else that was mentioned, NOT painful? I can't begin to imagine how it's not painful to others!

I had one friend who understood and who lived in my house for a while. Sadly he died a couple of years ago, but his sister was an Aspie and I'm sure he was too. He perfectly understood not to talk to me at all for at least an hour after I woke up, or if he had to, to speak quietly. He understood not to pull the curtains open when I wasn't prepared. He understood that when the smoke alarm died, it needed a battery change immediately. He understood that noise from neighbours drives me nuts. He understood that I need lots of alone time... processing time. He understood so much. The list is endless. Very few people in my life have understood and yet I keep saying it's the basis of my panic attacks (largely under control at the moment).

I'm very happy to have found others who experience the same as I do.


Glad you're finding your way at last soozzi (& welcome to WP :) )
It is so rare and precious a thing that you had such an understanding friend, at least you know there are people who 'get it' and the world isn't full of only the streamroller shouty types. You'll find a lot of useful discussions (worth searching the back pages for old threads) that will help you, and you can read here of people who have started the process of understanding themselves & their entire lives in 30's, 40's, 50's & 60's.

Noise from neighbours is another big problem for me, at home and at work, can't escape and on bad days it drives me nuts with stress, anger and (with neighbours) sheer unhappiness that seeps into my bones and settles like concrete.

If I were a wealthy human, I'd build sensory-friendly houses & flats, sound-proofed to the hilt, with gardens for those who wanted them, nice high fences that blocked out prying eyes, but gates & removable panels optional for a bit of social contact.

The spacing would be adequate to not feel closed in (esp in space-limited towns), shutters that filtered light so you could graduate light levels & not always need curtains drawn, but with the option to have big windows or small to fit your preference.

They'd be located in places that were not on main roads, preferably with views of parks, fields, country, trees, water, or if not possible, have front gardens with planting that blocked less pleasant views & muffled the noises coming in from the street.

I'd have security built-in so you could observe who was at the door before you answered, and if you didn't want to answer it you could use an intercom to tell them to 'please go away i'm not interested', with an option to have pre-recorded messages or just a polite 'no thanks' sign. This would be on the houses as well as flats, where intercoms are nothing new.

There'd be fresh-air filtration in at least one room to escape pollutants & allergens & better control of heating & humidity.
I'd get as much free-energy as possible with solar panels, good insulation & water-saving measures.
Ok, if i'm going out into big money realms i'd build those houses that look like they're buried under hills, opening out onto woodland views, or lighthouse-type towers for those who love waves and wind.

They'd be available at below cost or small rental, for those with sensory problems who are battered & bruised by living in a crazed world of stimuli. They'd be little oases of peace & quiet where you could also make as much noise as you wanted & it wouldn't disturb anyone else either. So you could have a good meltdown or de-stress shout, scream and bashing things about and it wouldn't matter one little bit.

If only...
Back to the ear plugs. :roll:



soozzi
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02 Mar 2012, 12:52 am

Oh my! Nier, you've just described my perfect house and place to live! I had something similar for a while and loved it there.

The one thing I'm not clear on is that I don't seem to have the social issues that apparently go along with being an Aspie, or have I just adapted incredibly well? I read faces and body language, probably better than most regular people.

I do, however, remember that as a teen I was painfully shy. Trying on my social persona consisted of, amongst other things, copying Elvis's girlfriend in the current movie of the time... yes a different one each month or whenever a new movie was released. One year, for a time, I even went to school with an American accent.

My sense of humour is pretty good too, but I laugh at things faster than most. My mother was the same, and so is my daughter.

But in the end, I don't seem to be like others socially, in quite a few ways, especially where "processing" is concerned, and not liking to do the things that most people seem to like.

I don't have a "collector" thing for any one particular area, but there are a few hobbies I have that don't seem to interest anyone I know. I was never teased at school (and loved it), but would often be found staring out the window because I was bored. I don't like to be taught where teachers are talking at me. I either learn on my own or if I get stuck, I need to be shown once, or to be told why (with examples) and I've got it. I had no developmental delays, quite the opposite - did everything early and was remembering phone numbers by age 4. Not sure if that fits with anything.

At university, it was one big meltdown that lasted a year before I left. I can't tell you how much I hated that environment! I have read that's common.

It has only become clear to me this week why I have such a thing about rules. I really want to slap people who tell me that, "rules are meant to be broken", especially recently with rules in our complex about the swimming pool. While I love showers, getting splashed in the face annoys me terribly. The kids dive-bomb into the pool constantly, when they're not supposed to, and the supervising parents don't care, even when those rules are emblazoned in several places. So, I guess I'm the unreasonable one, not them, but I now understand why. Makes that a whole lot easier and I can deal with it better. In fact, I rarely go near the pool outside school hours. The screeching is enough to put me off, but when I'm prepared for it, I can cope much better. I wish my iPhone and earphones were waterproof!

There's so much that makes sense now! I'm really surprised at some of the things about Aspies that are so "me". Now, knowing why is three-quarters of the battle for me. There must be degrees of being Aspie, and maybe the social thing didn't hit me as hard. I have also read that women seem to adapt better in this area. Not sure how true that is or how that's true for me.

Yes, I miss my friend because he got it without my having to explain. Definitely precious!



finallyFoundOutWhy
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06 Mar 2012, 2:14 pm

catlady2323 wrote:
Imagine if you lived with bees. Wherever you went the bees went with you. When I am in my quiet home the bees are sleeping and don't bother me. But as soon as I leave my quiet home and venture out in public, the bees wake up. At first they just "buzz" around being annoying. But the longer I am out in public the madder they get. Pretty soon they start stinging me, and if I stay out long enough, they all start stinging, till I am overcome by the pain. I have to go home (or someplace quiet and dark) to decompress from the pain.

Now the pain I feel is not literally like a bee sting, but the pain is real none-the-less. It becomes more intense the longer I am out and exposed to sensory stimuli.


What an awesome analogy

i am going to use this in explaining it to people - i have likened it to the fatigue of road noise or long aircraft, but it doesn't get to the pain/discomfort part - so i have to add in a reference to a progressive sunburn pain/itch to complete the picture


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MrXxx
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06 Mar 2012, 3:32 pm

Make them wear porcupine snuggies inside out.


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10 Mar 2012, 9:53 pm

Lynners wrote:
It's called respect.


Sad, but true. Most of the people at work who I wish would understand the video, can't.
Their behavior has clearly and consistently demonstrated that they're too wrapped up in their own insecurities to understand or care how their behavior is making problems for me. So that leaves me feeling like I have no alternative but to passive-aggressively work around it.

I'll remember the headphones idea to see if thinking about it helps me through next week's meeting when people start having side conversations during a telecon presentation.



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28 Mar 2012, 10:33 am

I don't try to explain it unless absolutely necessary because most people have looked at me like I'm nuts, or recommend counseling. ( :x )

I make metaphors, (not as good, but kinda like your good 'bees' one catlady2323), and often they make my kids laugh and understand a bit. Way back when I was a little kid my mom would brush my always tangled hair and it felt as though she was using a gravel rake on my scalp it hurt so much. When I'd cry, she'd brush harder and tell me I was being silly. I told my kids this when they were little and wanted to brush my long hair, and then they laughed at the image and were quite gentle. I've not been able to make them understand about how loud a sound a door makes when opened or closed suddenly. My startle - reflex is always turned up to high, so, many little sounds set it off. i thought I was the only one like this.

Bright light - for some reason especially in spring - gives me an eye-ache and makes me feel as though I can't think, because it is assaulting my eyes. To me it seems like everything is louder when everything is bright. I like having windows, but have to keep curtains closed when sunshine is coming in or if it's glaring off of surfaces out there.

Being in a crowded theatre or restaurant is terrible. I can go in, but I have to go right out again. A quiet restaurant though, like at times where the place isn't busy, can be fine. It depends on how many people are there.
I enjoy very much quiet calming sounds, like small fountains, brooks, soft wind ... etc. :)