how severe are your sensory issues?

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I have bowel issues. I guess that would be severe. What's the name of that Kinks song, again? Okay...never mind. I guess it all depends on how you look at it. At least, I don't act like a rat. :O)

mine can be avoided too. best to just stay at home with no one but my 3 cats with me. i get phobic anxiety from many different things.

This thread really resonates with me.

I have lived over 5 decades with sensory issues. I did not know that I had been diagnosed as "borderline autistic" when I was a toddler, until my Mom told me this when I was in my 40's. She was told I would outgrow it. Guess what ? I didn't.

As a newborn, (she reports) I could not be held or touched, I would scream in pain. So they devised a system of leaving me alone in a darkened room, only venturing in to change my diaper and feed me a bottle. The slightest noise, or touch would send me into paroxysms of pain and screaming. When I became a toddler, I was then still left in darkened rooms, and since I was content to bang my head on the wall, and play with a spoon, I was left alone. I was not required to wear clothing, or be out in public.

You can imagine the problems I had when I tried to assimilate into school life. I was the "invisible" girl.

As an adult I did attend college, and found I had a most unique skill, memorization of anything seen with my eyes, in particular anything written. My mind could "photograph" the written word. Very handy when studying for college exams. I graduated with a Bachelors degree, summa cum-laude.

Because I had been raised in an isolated fashion, it was my habit to come home from school, and just stay in my bedroom after school. Thus the sensory overload I experienced at school, was decompressed at night when I had quiet and no sensory stimuli.

My main sensory issues are noise, touch, temperature, visual clutter, and movement of people near me.

I had my hearing tested this past summer. I have the worst case of hyperacusis the technician had ever seen. My loudness discomfort level (LDL) is 50dB (normal is 90-100dB). In addition I have hyperacute hearing and can hear certain frequencies at 0dB (normal for adults is 20dB).

Touch is something that I avoid. I have a very low tolerance for pain. I cannot tolerate uncomfortable clothing (which women's clothing is notorious for being, especially the shoes !). I do like heavy blankets (even in the summer time) as the pressure of the blanket calms me.

I have a very narrow range of temperature that I can tolerate. I live in the american midwest, where temperature ranges are typically from the low teens in winter time (and sometimes as low as -10 fah. ), to 90 degrees fah. in the summertime. In addition we have awful humidity and I just can not stand to sweat ! I have found my temperature tolerance range is 45 - 65 degrees with 0 humidity. We only have this range for a couple of weeks in the spring and fall.

Visual clutter is also something that "confuses" me. Because my mind is constantly "snapping pictures" of my visual field, this can become overwhelming. It is like having a camera, and a video camera operating inside my brain at all times. Very handy when applied to hyperfocused projects, very disconcerting when confronted with a busy visual field. So for instance, I keep my home clutter free. I don't have lots of pictures of family, and mementos everywhere. I have a single color wall, with one prominent piece of an Impressionist era painting framed on that wall, for example. I keep my laptop desktop very uncluttered, only the basic icons I need.

I have also noticed that I cannot tolerate the movement of people near me. Needless to say, this made life difficult when I was raising three neurotypical children ! I would find myself looking for a place I could sit still, when there were too many people being busy around me. I would sat in a chair while they "buzzed" around me, and this would keep me from becoming too overstimulated.

Now that I am further along in life, and have words to describe my experiences, (words that either did not exist, or were in their infancy when I was growing up), it has made it easier for me to no longer care what the neurotypicals think about me. It has also enabled me to have perspective on the life I now have, as compared to the life I hoped I would have at this stage of my life.

For me my aspergers is all about the sensory issues. I taught myself people skills, and can converse very intelligently in a one-to-one conversation. I also have no stage fright, and can give speeches (which I have done) without any problem. It is the sensory issues that took me out of the work force, and caused me to be unable to be the kind of parent I wanted to be with my neurotypical children. (Two of them played on their highschool basketball team ! I was NOT the parent that attended every game, organized the concession stand, and cheered loudly. It was all I could do to creep into the final quarter of the game, with heavy duty earplugs in my ears, and try not to cry).

In closing, I explained to my kids what life is like for me with a simple example. I said it is like living with bees. When I am at home the "bees" sleep. The moment I step outside my door, the "bees" wake up gradually, and begin to buzz. (I don't hear actual bees btw). As I am confronted with more and more sensory stimuli the "bees" then become angry and begin stinging me, until the pain becomes so great, I have to get to a quiet dark room, and decompress. The pain just becomes overwhelming.

Another example I have used, is that it is like having a sensory stimuli bladder. Just like when your bladder starts to fill up, at first you feel just mildly uncomfortable, and begin to think about getting relief. If you postpone that relief, then it increases (the bladder keeps filling), and then you are very uncomfortable. If you continue to wait , then you are in outright pain, and if you go long enough, your bladder will burst. Noise is especially hard on me, and can fill that sensory stimuli bladder very fast.

I have spent many an hour in my car alone crying, or in a bathroom crying quietly, because my "noise bladder" burst.

I could not agree more.

i am very sorry to hear that sensory issues have undermined your enjoyment of life. spd can also affect you emotionally and vice versa since the more emotional distress that one has and wishes to numb, the more one feels physical pain and subsequently feels even worse emotionally, since the body interprets chronic pain as signs of depression/anxiety. i really wish that there was more knowledge of spd so that these things can be prevented. the only decent info on it out there comes from the spd foundation, which states that 5% of the population has some form of spd. most people with sid/spd are misdiagnosed and sometimes given medications that do not work. most people take it for granted that their sensations are integrated with their higher level thoughts or that they are able to process incoming sensory information, so they do not understand. it seems so obvious to me that spd should be considered for its effects because those who do not understand that our sensation is disconnected from our thoughts, or that we overeact to certain kinds of stimulation, will just assume that we are difficult, weak, lazy, careless, etc, and as a result, no one treats the root of the problem.

Last edited by petitesouris on 27 Mar 2010, 11:14 am, edited 2 times in total.

that is quite something. i have also always wondered whether people with hyperacusis can hear higher pitched noises than most people. i used to have some hyperacusis, although a bit less than you described, yet i can still hear very high pitched noises, such as the weird intermittent sound that my laptop makes when it is sleeping. i also used to have tinnitus, which means that their were ringing and buzzing sounds in my ears. i feel much better now that it has gone away, along with other sensory problems.



you are not alone on this. i sometimes sleep with my winter jacket on, even when i am underneath a blanket.



same here. this is why i never bothered to take drivers ed and rely on public transportation. i can't imagine having to quickly process all the things in my visual field. everything in my dorm is neatly arranged, because if it is not, then i cannot find what i am looking for because my eyes get distracted by all the noise.

i cannot stand crowds. i especially hate crowded hallways.

good point, but it seems as if people with asd are affected in most aspects of it. well, i do not know about everyone, but i am affected in all of them, whether spd means general difficulty with input, or hypersensitivity, or hyposensitivity, or having a quirky processing style, or not being able to act upon or remember sensory input, or not being able to associate words that i hear people say with their underlying concept, which i can otherwise understand. in fact in addition to not processing what i see, hear, feel, etc., sometimes i do not even perceive or sense input, since in a way, sensing is processing and sensing is remembering.



that is definately true since researchers have found disconnections between the perceptual areas of the brain and the frontal lobes, yet i still sort of think that the sensory issues are both a cause and a consequence of autism and our cognition. the ones caused by our cognitive style will most likely lead to others, which will cause yet more issues, whether or not they are autism related.



that is a huge issue for me. all input that i process subconciously stays subconcious, so that it is impossible to find objects, or hear someone's voice when multiple people are speaking, which is weird since i am otherwise really good at perceiving details that others do not notice.



i used to do the same thing when i was younger. sometimes i would even see the room spinning when it obviously was not. i used to hate riding in the back of cars since this worsened my motion sickness. I would always feel nauseous if the windows were closed because there was no air circulation and then i would feel closterphobic and stifled and nauseous.



i think i remember reading once that emotional reactions to sensory input are a symptom of spd since the link between feelings and perceptions is scrambled, which makes me interpret people's voices the wrong way. i also feel an aversion to certain colors.



i also have weird perceptual experiences which sometimes feel like hallucinations, except they are not. mine are mostly tactile. they mostly result from pins and needles in my feet, which literally makes it feel as though needles are being stuck into me or that something is biting me. i have so much tactile sensitivity that i sometimes feel as though bugs are crawling on me.



it is interesting how one can both have tactile hypersensitivities and hyposensitivities. it is possible that your pain threshold might still be high despite the physiological condition of your nerves, so that you think that you are in pain despite having numbness (think of phantom limbs), or that different kinds of pain will produce different sensations depending on which kinds of nerves in what parts of your body are affected. i have both numbness in my face and upper body and tension and hypersensitivities in my entire body. when i was younger i would cry in pain for the most trivial things, yet when i broke my arm, i did not even feel pain until a week later, and then found out that it was broken.



interesting. i wonder how that feels and how that occurs. i heard that this can occur with migraines.



i also feel like it is hard to locate myself in a sensory environment. my proprioception is especially terrible. it was so dysfunctional that i wound up with scoliosis (because i could not feel that i was not sitting up straight and could not locate where the pain was) and had to get surgery for it.



this is most likely linked with dividing sensory information into categories. i do not have synesthesia, but i know how it feels to process information in a gestalt mode because i could not make sense of the parts. i am sure synesthesia must give you a vivid imagination though. (many musicians have it).



i feel the same way. my definition of change in any sensory environment can be anything from leaving the country to having an object out of its usual place in my dorm (and then losing it and not being able to find it).

really? you must be fortunate in that respect. i hate sunlight too. it sometimes makes me tear and it often feels like i have salt in my eyes. btw you have written tons of posts. how did you manage that just wondering.

mine are extremely severe, u name it, lights, noise, touching, smells, tasting, everything

I have some sensory issues, but they're not too bad. Smells can be overwhelming. Most perfumes are terrible. I can sometimes smell people's pelvic area I always listen to music in public, or hum to myself, to numb the sounds of voices. Other sounds aren't so bad, just voices.

I sometimes lose my hearing when I think. It's all blurred into a mass of indistinguishable sounds. I also kind of have tunnel vision, I only see things that are right in front of me and pretty close, although I actually see really well from a distance. Cold light makes me feel sick.

I didn't use to think I had sensory issues. I thought I was normal.

Sometimes I really dislike touch. I grin and bare it with medical professionals, but otherwise I can only stand it from people who are really close to me. I cringe when someone brushes up against me, it's like touching maggots. People are worse than things, they're so loud and smelly and intrusive.

I also have strange preferences. I like the smell of horse menure. I like being cold and have high pain tolerance. I like smooth cool surfaces and lying down on the ground. When I was a kid I would stack my toys in boxes and put them on my legs and torso while lying down. I liked being squished.

I feel different sensory wise, but it doesn't affect me as much as my social and emotional problems. I avoid things that make me feel bad and develop strategies to cope with the rest (eating liqorice and sour stuff eliminates smells). I feel bad for those of you who are disabled by your sensory issues

Sensory issues affect me very much, I think mostly under stress, but sometimes all seems to be fine and suddenly somebody starts speaking loudly and it is too much... I think it's just that some specific sensors are always very disturbing for me.

thanks for the information in your numerous posts, and thank you for the kind response to my post. All is fine now. Those dark years are in the past although my time on methadone extended until the age of 36. I was frequently told i was a completely "atypical" junkie and that there was more going on with me than the Drug and Alcohol clinicians could work out. I knew that to be the case. It always puzzled me why I LOVED being on methadone. Basically it enabled daily sensory management in accord with stringent routine that allowed me to live quite peacefully. Being a synthetic opiate, it dulled EVERYTHING, and I found other human beings and daily stimuli to be at least manageable.

The SPD aspect of my ASD is now manageable to some degree without recourse to substances and alcohol. I meditate, wear ear plugs and sunglasses and hat when out and about.
I have also reduced hoarding and clutter in the house in order to reduce visual stimuli which overwhelms me and can make me cry.
I have a blurring of the senses - so the senses bleed into one another in a mildly synaesthesic fashion.

ALso, the appropriate management of sensory issues wherever possible, also DOES reduce the concomitant anxiety and depression and also the associated meltdowns, and this in turn can lead to more peace on a daily basis.

I am fine with food textures providing all my food is doused in asian chilli sauce. I need extreme flavour impact and a sameness of flavour from meal to meal. As a child, I wolfed down food in a few seconds in order to cope with taste differences, and i gravitated towards salty and pungent and spiced foods in much the same way I do today. (Have to watch it however as it can lead to auto-immune psoriasis flare ups.)

My proprioceptive issues are evident. THere is a distinct feeling of jerkiness when I am exposed to unfamiliar stimuli, and there is also an inability to read or comprehend bodily information when I am exposed to too much stimuli. Hence, my frequency in bruising and banging into things when trying to live life.

ANY unfamiliar and new environment results in an inability to read bodily sensations. I tend not to eat, not to be able to go to the toilet when I need to, not to read self-care signs when in a new environment. It will take me a few days to settle and start to
get into the self-care routine I have been able to devise within the familiarity of my own home. IT happens, but farm more belatedly than others who do not have this issue.
I also have hyperacusis and spend most of my time without ear plugs in emotional pain (crying) when around others or retreating into isolation to cope. My son and ex are used to my hands flapping and me screaming at people to be quiet. This has gotten worse with age actually, and I would question those who maintain ASD traits improve exponentially over the lifetime course. For some, this is the case and for others who may be more severe, there seems to be fluctuations.

I'm also particularly interested in teasing out the sensory reacting from the emotional realm, in my own case., That is what I am focusing on at this stage of my life, using meditation as a tool to help with centredness and separating out my rather rudimentary emotional realm from the sensory overload reactions that have been entangling me for so long. It's good to begin to sort through this rather methodically.

Hi petitesouris,

<everything in my dorm is neatly arranged, because if it is not, then i cannot find what i am looking for because my eyes get distracted by all the noise.>

Well said. That is exactly what visual clutter is to me, it is like visual "noise" (even though it doesn't cause me to actually hear anything). And just like regular noise can overwhelm me, visual busyness has the same effect.


<yet i can still hear very high pitched noises, such as the weird intermittent sound that my laptop makes when it is sleeping.>

I can hear this noise also ! !

I did drive and owned a car for decades. Since I could hear so well, whenever the engine (or other things) in the car began making odd noises, I could hear them immediately. My mechanic was always amazed that I could pinpoint where the noise was coming from and could describe it well enough to facilitate his repairs.

Regarding the thing I said about sensitivity to light touch but having less sensation in some ways, it's actually a known aspect of a neuropathic pain condition I have. It's like that (with many other details) for everyone who has it even if they're not autistic. I get massive amounts of relief from Lyrica and Trileptal (which also treat a couple other conditions I have -- I even found out about the pain not being normal when Neurontin given for epilepsy dulled it a bit). Prior to that I was in so much pain that I routinely dissociated to cope with it. But anyway the characteristics I have exist in both peripheral neuropathy and central pain (and my pain pattern matches central pain precisely). But since the anticonvulsants treat it so well my doctors haven't really cared which it is.

Like a few others, I have "misophonia" - or selective sound sensitivity syndrome. I am sensitive to eating and drinking noises, such as chewing gum, slurping hot drinks or soup, gulping, as well as tooth brushing, whistling, and a variety of other specific sounds. I am also mildly sensitive to fluorescent lighting - I keep the main lights in my office switched off because I find them too bright. I am the only person at work who does this. I like soft lighting.

The sound sensitivity means that I cannot sit with my family and watch TV, because they will soon pour tea and drink it, which sends me from the room (the pouring, the stirring, and the drinking all enrage me). I spend a lot of time on my own at home, because I like the emotional and auditory peace and quiet of being by myself. I can hear people pottering away quietly in other rooms, and that often meets my social needs. I don't have to be in the same room, just know that they are in the house somewhere enjoying themselves. Fortunately, my family are all introverts, so they tend to be quiet (other than their tea addiction ).