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how do your sensory issues affect you?
only when over aroused 10%  10%  [ 7 ]
only in new situations 3%  3%  [ 2 ]
only for certain specific tasks which can be avoided 8%  8%  [ 6 ]
mildly but they cause fatigue and irritability or tension and headaches 51%  51%  [ 37 ]
severely-routinely avoiding stimulation or constantly stimming and always confused 29%  29%  [ 21 ]
Total votes : 73

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26 Mar 2010, 8:17 pm

mine are terrible. they make it so that it is almost impossible to have a conversation or to follow what is going on why isn't spd in the dsm? why is it never mentioned in terms of how it negatively impacts those on the spectrum? i am convinced that our symptoms would be much lighter if sensory-motor issues did not impact our thinking and concentration.



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26 Mar 2010, 8:21 pm

I think they're getting worse over time, maybe it's beacuse I spend a lot of time at home, which is basically without windows and noise-free except from some steps and annoying noises from upstairs, it's great environment, but maybe too different from the outside. Or maybe it's just the normal course of neurodevelopment. Probably both.

Edit: I totally agree with the OP when he says "why is it never mentioned in terms of how it negatively impacts those on the spectrum? i am convinced that our symptoms would be much lighter if sensory-motor issues did not impact our thinking and concentration". they're such a big factor, right now probably the main problem in my case.



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26 Mar 2010, 8:26 pm

Mine are moderately impairing but I can easily become a complete train wreck when I try and ignore them.


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26 Mar 2010, 8:30 pm

Mine are mild. Not bad.



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26 Mar 2010, 8:45 pm

It'll probably be in the next DSM in the ASD criteria/label.

Depends. I don't really have a frame of reference to compare myself to. Bad enough that I can't handle being around crowds of people and in the city with all the cars, movement and people (even if the people aren't in crowds). But, this isn't bad compared to some people I hear of.



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26 Mar 2010, 8:48 pm

Mine can be avoided, but then I have to avoid a lot of enjoyable things just so I don't become overloaded. Going to concerts and festivals is a big one. Crowds almost anywhere is enough to make me feel uncomfortable.
I try to ignore my clothing and skin sensitivities. It doesn't mean they're not there.
I would say they're mild to moderate. I also found that alcohol made my sensory sensitivities even worse, whereas I thought that it would numb them.


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26 Mar 2010, 8:49 pm

I find that stress effects it to. Then more stressed out I am the more things like sounds, smells, lights effect me.
Some days just the sound of my computer's fan bother me.

I'll get headaches or feel my self going into the rumble/rage/recovery cycle.

Then 2 months ago I got a sinus infection that caused me to lose the hearing in one ear. I've slowly recovered my hearing but still have presurre and ringing that the MD says could take another month to clear up and that is driving me bonkers.



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26 Mar 2010, 8:55 pm

"fatigue and irritability or tension and headaches"

That's right on for me.



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26 Mar 2010, 9:10 pm

Ow. Lab really hurts. The smells, sights, freaking sounds... Work hurts, too, but at least it smells nice, like garlic bread, instead of formaldehyde. Crowds are loud. Currently incapable of handling crowds and stuff. Ick... (also somewhat overstimulated at the moment, hence part of my frustration.)

It's not on DSM IV or something, because not every autistic/aspie has sensory issues. My dad doesn't, and I'm almost certain he's on the spectrum. Then again, I don't know of any sensitivities he's ever had. Hmmm... maybe not then?



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26 Mar 2010, 9:13 pm

I read somewhere that it may be criteria on DSM-V with Autistic Disorder.


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26 Mar 2010, 10:14 pm

I see a specialist in ASD's. I am told by him personally that have the most severe sensory issues of any AS dx'ed person he has come across. That is a bummer for me. It is the main reason m life is so restricted. It affects all aspects of my life and how I need to live. IT affects communication, day to day living, what I eat, what I do in a day, etc etc. If they were less severe, I would be able to deal with a lot more.

BUT---now that I am managing them really well - I am so much more centred and peaceful than I have EVER BEEN. I am nearly 48 and I wish someone has given me earmuffs the day i was born..........that alone may well have made a huge difference in terms of my early life problems and life path. Instead, I got told by my AS mother that she had the same problems with light, sound toe walking etc and what one has to do is "ignore it and learn to deal with it.' She has a VERY different opinion now as someone who acknowledges her own traits - but growing up she just brutalised us with this kind of parenting in much the same way as she had been brutalised. She and I have talked about this a fair bit in the past year. I just had to HANDLE the sun and HANDLE the light and the awful smells and all the noise and people etc. I was FORCED to, and it was heartbreaking for me> I did not even have words to describe why I was the way I was - as this was a LONG time before ASD's were properly identified, if not understood, except in the most extreme of cases. I retreated into my own world a lot. I also felt completely invalidated for who and what I was, and my substance and alcohol abuse in teen years and early adulthood was largely an attempt to handle extreme sensory problems - without even having a name for what my problem was.
All I knew is that I couldn't handle ANYTHING and got more and more depressed and hated being around a lot of people and things and action unless I was suitably anesthetized or inebriated.



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26 Mar 2010, 10:28 pm

The problem is that sensory issues is a loose term that can mean a broad number of things.

A lot of people seem to use it for things like particular sounds that hurt their ears.

Or for a particular sense that is overly sensitive in the sense of causing discomfort with ordinary levels of stimulation.

Or for being overly sensitive as in able to perceive a wider range of stimuli than normal (like my dad who before aging took it away could hear above the normal human hearing range, or like people who can hear exceptionally quiet noises).

It can also mean that processing more sensory information is difficult and overloading whether or not it's painful or irritating. (And painful and irritating may be two separate things themselves -- like sounds that make you angry are considered misophonia rather than hyperacusis).

Then it can mean needing extra stimulation in order to not feel weird or icky inside, or in order to pay attention to things.

Or it can mean the act of processing sensory information and comprehending it (like recognizing objects or words).

Or it can mean having input scrambled by the time it gets to your mind.

Or it can mean synesthesia (having senses mix with each other).

So like many other broad terms it is easier to give a detailed description than to give a single rating that is meant to account for all of those things.

Also, perceptual processing is often by researchers found to be far more central to what autism is (along with other cognitive issues) than the actual criteria for autism -- the social and communication and repetitive behavior are caused by alternate perception and cognition, rather than perceptual stuff being tagged onto things as an afterthought.

So anyway...

The single biggest area that leaps out for me is the area of having difficulty turning raw sensory information into the more common categories people tend to think in. I look around and I see shapes and colors, I hear tones and timbres, I smell scents, I feel textures. It takes effort to turn this into... separating objects from each other, then recognizing what other people would see them as tables and chairs and so on. Same for finding words instead of noises. Among people who are able to communicate about this in words at all, I am way on the severe end of this one.

This often alienates me (experientially) from autistic people who find this second nature, because it's not just a difficulty seeing things the normal way. It's also an entire way of perceiving and understanding in its own right, involving mapping patterns of sensation instead of using concepts and categories. People often assume that my experience is the same as similar experiences they left behind at some point, without recognizing that if you live decades without leaving it behind then you are way better equipped to navigate it than any young child. This also had an extreme effect on the way I learned to use language because I used the same skills there that I used for navigating other parts of the world.

Then there is something I didn't describe above but that is a huge problem for me: Any new or unexpected sensation is difficult for me. This means that I am most comfortable at home in my bedroom. The more new sensations I have to process -- the more new of a place I am in, or new sensations have been brought into an old place -/ then the more difficulty I have. Difficulty with comprehension is one part of it. But it's like the newer the situation, the more I feel like I am floating in a sea of totally incomprehensible sensations.

When I was younger I went through a phase where I would "ride the chaos" in such situations. But ever since I became capable of motion sickness (age 16), I tend to get seasick in such situations and it's one probable reason I need to be on anti-nausea drugs a lot. Too many times I have traveled to a new situation and puked my guts out in a way that a friend said she had never seen before in a non-drunk person. One time I traveled to visit that friend and didn't vomit but spent my whole visit laying on the floor and groaning while using the kind of mental arsenal against vomiting that only emetophobics ever learn.

Another thing that happens in such situations is that my brain will just... sort of grind to a halt. I end up curled up in a ball and totally unaware of my surroundings for awhile. Then suddenly my brain gets overwhelmed by a backlog of unprocessed information. I literally experience it as if it is happening to me at the time, instead of maybe 12 hours earlier. And I sort of (from others descriptions) lay there and twitch while (from my perspective) I am trapped in this ongoing backlog of sensation that is so forceful that I cannot think and cannot perceive a beginning or end, it feels endless and incredibly painful. And while I am getting an entire day's sensations replayed in the course of 15 minutes to an hour, I can barely perceive anything outside me. It's very intense and once it's started there is no way out.

As to which sensations I find painful, that depends. I start off finding specific sensations painful. They are most likely to be visual, but can be auditory or tactile. The more sensations I process, then every single sensation can be painful. I can find smell or taste unpleasant but rarely painful. I remember explaining to the shrink who diagnosed me that even rubbing my fingers together can hurt my ears at times like that.

One weird thing is that sometimes deliberately overloading a sense is better for me than a moderate amount. Like in concerts I can be driven crazy by constant moderate level sound bombardment but if I sit next to the speakers it's all drowned out. So I have learned at chaotic events with loud speakers I do best right by the speakers even though my hearing is measurably hyperacute.

I also have misophonia -- I have sounds that make me terribly irrationally angry. Most are eating or other mouth sounds. I startle or shake or want to get violent because of these sounds. But the reaction is emotional rather than pain.

I'm also diagnosed with hyperacusis, meaning my hearing is measurably more acute on parts of my audiogram. My dad once accused me of hallucinating when I told him there was a knock on our front door. I made him go look and he came back shocked because someone was knocking across the street. Things like that happen a lot.

I tested myself on that test of visual acuity (not the same as glasses tests, I do need glasses) and my visual acuity was definitely higher than average too. I see lots of detail, I often go around with my glasses off just to shut it out like now so I can concentrate on typing on my iPod instead of seeing lots of detail everywhere (I am very nearsighted).

While my sensitivity to pain in light touch is heightened, I think my tactile acuity is slightly diminished, but that's because I have a nerve condition.

I think I smell better than average. I can smell things sometimes like illness. I recognized family by the smell of where they sat (their butts left smell residue, not pleasant). I recognize the action of different medications by their smell in my bloodstream or something. I either have more acute sense of smell or else I use smell more than most do.

I do get something in all my senses that feels like noise or fuzz. In touch it feels furry, in ears it is ringing, in sight it is shimmering colors. I used to deliberately get lost in these sensations.

I also get something that feels like scrambling. It may be due to such extreme hypersensitivity that for instance in sight the image seems to "break up" or shatter. It makes me feel that same way described earlier like swimming in sensations. I often like to grasp a hard cold object to feel like some part of me is not in sensory freefall. Because of this and related phenomena some of my doctors have checked off on forms as if I am low vision or hard of hearing when technically I'm the opposite -- it's just it has the same effect to be so hypersensitive that the information breaks up and gets confusing. I am somewhat worse this way in vision than sound and when I could walk I used to sometimes hold one end of a scarf while someone else held the other do I could feel my way around in chaotic environments.

I also process body sensations as external rather than internal. I routinely have trouble even locating my body because its sensations feel like just more external sensations. This can make it difficult to move.

My trouble with perceptual stuff is severe enough that when I tried to do daily living tasks by myself the world just scrambled so bad I couldn't even eat without hours of effort. Or remember that food existed behind a blank cupboard door. Etc.

I get overload and shutdown all the time. Any normal environment creates so many stimuli that even when I am on meds that make it stop hurting... it's like everything just fizzes out in my brain.

Sometimes I feel like I need vigorous movement to avoid nausea. That makes me rock very hard to the point it gets too painful or tiring to take and then I am a mess.

I also find that if I allow my body to do stinking as it wants rather than suppressing it my comprehension goes up a lot and I feel really connected to my surroundings. Someone once observed that they could map my movements to soy ds and other sensations in my environment and I realized that is very true. It's very much a way of directly translating sounds or sights into movements and then I find it easier to understand. Unfortunately my movement disorder sometimes prevents these movements these days so I get more disoriented because I lack that strategy as much.

I also get synaesthesia. Letters and numbers have color, sounds have color shape and texture, textures can have visual shape, etc. I also get a sensory bleedthrough that is like a temporary synaesthesia when I get overloaded. This is different every time so it differs from standard synaesthesia.

So basically I have all these very different things and yet they all get called sensory issues because they all have to do with sensory perception. Easily the most severe for me are the trouble using standard category for sensations and the thing where all new sensations (but new is meant very loosely so even in my room alone with the shade pulled I can get this) create utter painful chaotic nauseating sensory hell. And the thing where every sensation is painful. But I have most of the other stuff too. (And I have a diagnosis of sensory integration dysfunction but really I think it's part of autism for me because most of my autistic traits are caused by this). By the way the way my shrink got around this and my movement disorder not being in the DSM is by coding it as central nervous system disorder not otherwise specified.


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Last edited by anbuend on 26 Mar 2010, 10:44 pm, edited 1 time in total.

matt
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26 Mar 2010, 10:40 pm

My sensory issues were what lead me to discover this site.

For years I was so confused about why so many things bothered me so much but didn't seem to bother other people, why I would avoid certain foods, sounds, lights, smells, textures, fabrics, et cetera. And why I hated them so much and had the reactions they caused me to have.

I would often go online and look for people who had the same sensory issues. I would search for the exact wording I would use to describe a phrase and a feeling, and one day I found wrongplanet in a Google search result.

And when I saw the summary was about sensory issues and obsessions, I decided to click.

They don't seem so bad now, but that's mostly because I am better at avoiding situations where I might be exposed to problematic stimuli, and not because I've been desensitized to them(although there are a few that I have overcome). Any time I touch the wrong thing and recoil or smell perfume and feel like I can't breathe or walk outside without sunglasses and can barely open my eyes or get the wrong type of food in my mouth and start to gag and can't swallow, I'm instantly aware that the issues still affect me quite a bit.



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26 Mar 2010, 11:32 pm

millie wrote:
I see a specialist in ASD's. I am told by him personally that have the most severe sensory issues of any AS dx'ed person he has come across. That is a bummer for me. It is the main reason m life is so restricted. It affects all aspects of my life and how I need to live. IT affects communication, day to day living, what I eat, what I do in a day, etc etc. If they were less severe, I would be able to deal with a lot more.

BUT---now that I am managing them really well - I am so much more centred and peaceful than I have EVER BEEN. I am nearly 48 and I wish someone has given me earmuffs the day i was born..........that alone may well have made a huge difference in terms of my early life problems and life path. Instead, I got told by my AS mother that she had the same problems with light, sound toe walking etc and what one has to do is "ignore it and learn to deal with it.' She has a VERY different opinion now as someone who acknowledges her own traits - but growing up she just brutalised us with this kind of parenting in much the same way as she had been brutalised. She and I have talked about this a fair bit in the past year. I just had to HANDLE the sun and HANDLE the light and the awful smells and all the noise and people etc. I was FORCED to, and it was heartbreaking for me> I did not even have words to describe why I was the way I was - as this was a LONG time before ASD's were properly identified, if not understood, except in the most extreme of cases. I retreated into my own world a lot. I also felt completely invalidated for who and what I was, and my substance and alcohol abuse in teen years and early adulthood was largely an attempt to handle extreme sensory problems - without even having a name for what my problem was.
All I knew is that I couldn't handle ANYTHING and got more and more depressed and hated being around a lot of people and things and action unless I was suitably anesthetized or inebriated.

Millie, my mum is like that too. Thought my sensory issues may not be that severe they are still irritating. Well, my daily sensory issues have a lot to do with touch and sound. This is just by being in the house. When I go out into town or even the city they become much worse. The smells, noises and crowds of the big city make me feel on edge. And the Sun, oh how I hate that fiery beast. The heat on my skin is painful and that's when I haven't even been burnt yet.


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26 Mar 2010, 11:41 pm

The only things that really bother me, are bright sunlight, and loud music and voices.


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27 Mar 2010, 12:38 am

The poll sheet really does not include a category that fits. Individual issues are mild and to an extent I an live so as to avoid them - I do not HAVE to taste mayonnaise, and people who know me do not file their nails in my ears.

BUT - the cumulative effect keeps me on the reservation, with detox periods when I have to go in to the trading post. I cannot walk in mainline North America without protective gear and time to recuperate.