Adult Sensory Integration Dysfunction / Adult Sensory Processing Disorder

I’ve been meaning to do this post for a while, but it is one of those posts that take time and thought, neither of which I’ve had much opportunity for lately. It’s about adult SID / SPD.

I’ve always had sensory issues, ever since I can remember, but it has only been through Adam’s SID diagnosis that I’ve come to realize what I have is (mild) SID and not just a case of Extreme Oddness. Although there is no denying I am Extremely Odd.

I’ve spoken about SID/SPD before (btw SPD is the new name for SID), but to recap:

Sensory integration is the ability to take in information through the senses of touch, movement, smell, taste, vision, and hearing, and to combine the resulting perceptions with prior information, memories, and knowledge already stored in the brain, in order to derive coherent meaning from processing the stimuli.

 

Sensory modulation refers to a complex central nervous system process by which neural messages that convey information about the intensity, frequency, duration, complexity, and novelty of sensory stimuli are adjusted. Behaviorally, this is manifested in the tendency to generate responses that are appropriately graded in relation to incoming sensations, neither underreacting nor overreacting to them.

 

Sensory integration disorders vary between individuals in their characteristics and intensity. Some people are so mildly afflicted, the disorder is barely noticeable, while others are so impaired they have trouble with daily functioning.

 

Children can be born hypersensitive or hyposensitive to varying degrees and may have trouble in one sensory modality, a few, or all of them. Hypersensitivity is also known as sensory defensiveness. Examples of hypersensitivity include feeling pain from clothing rubbing against skin, an inability to tolerate normal lighting in a room, a dislike of being touched (especially light touch) and discomfort when one looks directly into the eyes of another person.

 

Hyposensitivity is characterized by an unusually high tolerance for environmental stimuli. A child with hyposensitivity might appear restless and seek sensory stimulation.

 As you can see by the above explanation, taken from Wikipedia, most of the focus is on children with SID. Although recent opinion differs, the thinking used to be that children outgrow SID. I believe that as adults, we learn to cope with our SID, we learn to (subconsciously and consciously) manage it in a way that makes it barely noticeable to others and even to ourselves. As adults, we all have our likes and dislikes, our own ‘quirks’. Some of this might be as a result of SID, some not. Point is, as adults you are more easily able to control your environment. If something freaks you out, you avoid the situation. Don’t like labels (me), you cut them out. Don’t like loud noise (me), you avoid it at all costs.

My two sensory issues are touch and sound. And I’ve learnt to manage both as far as I can. Everyone in my family knows they are not allowed to whistle. It drives them crazy that they can’t whistle, but it is FAR worse for me when they do. It is like a knife cutting through me, and I am not exaggerating. As for the touch thing, that took a while, but I am finally at the point where I trust Marko not to touch me by surprise. Of course, I first had to break his ribs before he ‘got it’, but now he knows if he touches me by surprise again, he will have ruined my trust in him and we will be back to square one – in other words, I will constantly be on edge around him. I will be in a constant state of super heightened awareness, preparing myself for the next ‘attack’.

I recently attended a workshop on SID entitled “Sensory Intelligence”, run by a local expert in this field, Annemarie Lombard. The course was aimed at parents and educators of children with SID, and its aim was to give us adults a better understanding of what SID is, and what it is like to live with SID. I already knew what SID was and how it felt to live with SID, but I wanted Marko to attend the course. The whole SID thing is completely new to Marko, and he doesn’t really buy it. He thinks OT’s and others conveniently label children as having SID or ADHD etc when there is nothing wrong with them. He says they see things that aren’t there. So I wanted him to understand what it was like to live in this world. For Adam’s sake, and a little for mine.

It was a fascinating workshop. She started off by asking us whether any of us were sensory defensive and two of us put up our hands. She said she can always tell which of the women are sensory defensive by looking at them. Usually no make up (check), hair very short or tied back (check), non-fussy clothes (check) etc.

She then made each of us complete our own sensory profile, to understand where we fit on the sensory scale. Most people are around the average or ‘normal’ mark. Neither hyper or hypo sensitive. Some people are more or less sensitive in certain aspects (one of the 7 senses), but not at the extreme. Marko was dead centre. About as ‘normal’ as normal can be. I of course, was right at the extreme end of the scale for tactile and auditory. And fairly high on the others.

It was an interesting workshop, but when I left I felt a little um, disappointed I guess. I suppose I had unrealistic expectations. I wanted to leave there with a Quick Fix solution or 3 easy steps to make Adam’s life easier. Which of course, is impossible. However, what I didn’t realize at the time was how much I learnt about myself on the course. As time has gone by since the workshop, I’ve realized just how valuable it was. I’ve had some pretty interesting insights into myself that has helped me understand who I am, and how my sensory sensitivity affects my every day life. It is amazing actually. Although the two are linked, so much of what I was attributing to anxiety was actually sensory overload. By the end of the day, if I haven’t had time to ‘modulate’, I am like stretched rubber band, ready to snap. Now that I know why I feel that way, it makes it easier to deal with. A good night sleep always resets me. The sensory overloads of the day is like turning the (what’s that thing called? The turning thing at the back of a clock) thingy on a clock. You keep turning it and turning it and eventually it has to release. Or it will snap.

On the days that I’ve had a particularly bad time (lots of sensory overload), I lie in bed at night on hyper alert, like a raw nerve.  Every sound is too loud; every movement by Marko sets me on edge. It’s damn hard to sleep like that.  Now that I understand why it is happening, it doesn’t freak me out as much. If I am really bad then I just get up and sleep somewhere else for the night. I don’t try and fight it; I give myself permission to ‘reset’. And now I understand why it is so hard for Adam to sleep some nights, even when he seems so tired. Children don’t have the insight adults do, and so they will find it far harder to reset themselves. Of course, part of his therapy is to teach him the skills to do that. What is really interesting though, is how he has instinctively learnt a lot of that himself. His bedroom is always dark (to keep the heat out) and he often go to his room by himself to lie in his bed, or roll around in his duvet. A self-imposed time out. Clever boy. Now if he could just do that at night!

As I say, the workshop gave me so much insight into myself. It is always easier to manage something if you understand it. The physiology (is that the right word?) behind SID/SPD is interesting as well. It is interesting that both depression and anxiety, and SID/SPD come from the same part of the brain (limbic system I think). One thing that I’ve noticed with myself is that my SID gets worse if my anxiety gets worse. Now that my anxiety is under control, my sensory stuff is also a lot better. But you are still not allowed to whistle around me. Or hug me. Or shake my hand. Sorry. We can just wave from afar (quietly), if you don’t mind.

(BTW, my sister is convinced that I either had, or still have ADD as well. I think they are all interrelated. The SID/SPD/ADD/Anxiety. There is something that is not quite ‘usual’ up there. Thank goodness I am so naturally brilliant and incredibly good-looking, that one hardly notices the mental disability.)

Comments

[Cheryl]

I've been wondering about this myself. My second son is definitely sensory-seeking, he always has something in his mouth, likes to make loud noises and is very tactile. I am both always sensory-seeking (touch, especially soft sheets/pillowcases) and sometimes sensory avoiding (noise, touch from people). My avoiding depends on my lack of sleep and general mood, my seeking is constant and linked to my thumbsucking as a child.

Given the discussion I had with my mother about the suspicions I have of my brother being on the spectrum I think there is a chance that I have certain characteristics of ASD that I would rather ignore, thank you very much.

[Jazz]

Great info! Thanks for sharing!

[mijk]

dman this is my husband.. Go processing..

[Megan]

Through your blog we've come to realize that my mother is probably SID - hers is auditory and visual - and knowing that has made me much more tolerant and patient with her "oddness" (like bursting into tears at any or no provocation). She started taking afternoon "naps" about three years ago; she doesn't actually sleep, just puts something over her eyes and lies down in a darkened room for 20 minutes. It makes an enormous difference to her and now I know why! Thanks for sharing.

[Kermit]

I am speechless. I've heard of SID/SPD for years, and fondly watched my daughter freak out when her socks are not on her toes exactly right (seems to be her only thing, though). But I? Cannot abide whistling, it HURTS me. And I cannot handle surprise touch, or light touch. Now I'm wondering about me...

[Christina]

Tertia - I am a friend of Millie's over in SF and have been following your blog. I really feel "odd" too and think it has a lot to do with SID - I have horrible issues with not being able to filter out noise and it really upsets me. Also at night I will wake up and need to sleep elsewhere away from DH as I can't go back to sleep. Do you know of any "solutions" or can you recommend any books?

By the way I might be coming to SA this summer for ED...

[Rebekah]

I can't post a long note right now, but I've thought for quite a while now that I have mild SID. Awful sensory integration (and an long-ago diagnosed auditory processing disorder), canNOT wear uncomfortable clothes. The whole hair thing? Check.

Makes me feel really shitty, actually. One more thing "wrong" with me. I know that's ridiculous, but that's how it feels when I think about it.

Anyhow, thank you for putting this out there. I think it will help many people, myself included.

[Andrea]

I had a long response to this post, but decided to cut it down. I will abridge it and say that I think the words "disorder" and "dysfunction" are inappropriately used to describe what you, Adam, myself, and most of your commenters are describing. Those words imply something is broken and needs to be fixed. I do not think you or Adam are broken nor do you need fixing. I think what we are experincing is a Sensory Processing Difference, which has the obvious disadvantages you describe, but can also have advantages. To be able to experience some senses in a heightened manner is not necessarily something I would want taken away from me. It makes some experiences much more incredible than they would seem to the 100% "normal" sensory person.

I am *not* saying that I think there is no benefit in doing what you can to help Adam deal with his intense sensations. I am just saying that labeling him as a disordered child is too harsh. I would rather see him labeled as a child with special abilities that he needs help in learning how to live with.

[margalit]

I've mentioned before that I'm very hypersensitive and I react to touch somewhat like you do. In fact just tonight my son woke my up by touching my arm, and I jumped a mile and he commented on how I always am so startled when touched while I'm sleeping. I'm also very sensitive to tags, socks, shoes, buttons, collars.... you name it, I can't tolerate it.

My son is also hypersensitive, and my daughter less so, but she does have some aspects of sids. It's a shame that Marko has such a negative opinion of sensory problems and neurological issues. It's just plain wrong to dismiss them out of hand, and it will not bode well for Adam when he is older and Marko expects Adam to behave like a "GUY" when it's not in Adam's makeup to be wearing uniforms and playing team sports.

[TheLuckyOne]

Thanks for the insight! I think we all can benefit from understanding. Best.

[Katie]

Tertia, you just gave me an "aha! moment" when you said, "and he often go to his room by himself to lie in his bed, or roll around in his duvet. A self-imposed time out." My son has autism, which almost always includes sensory issues. He will go lie in his bed with his pacifier and blanket several times a day, and I had never really connected the dots. I had just thought he was tired... but now I'm sure he's dealing with sensory overload. Thank you for the insight!

[Tamsen]

Quick question. Since it took you awhile to trust your husband not to touch you by surprise, what happened with Adam and Kate? I was thinking about this last night, and just wondering!

[Amanda]

Long time reader... This was an eye-opening post for me. My husband always tells me I have bat ears because the tiniest sounds upset me. If there's a water faucet dripping, it must be turned off. If there's a clock ticking, the clock gets tossed. I require complete darkness to sleep. No charging cell phone in the bedroom, no blinking voicemail light on the cordless phone... I wrap myself up in my blankets so tight that most people probably couldn't breathe. I can't STAND to have my feet touched and I have to wear socks constantly - the tighter the better. Tickling me results in broken bones. I always just thought I was odd, too... Just a little left of center, maybe. But there's a name for it. There are other people who are just as odd as I am. That was really an exciting thing for me to learn. I'd be really interested to hear what you have done to help yourself with things like sleeping and schedules.

[Meg]

Thanks for this, Tertia. Really interesting stuff.

Isn't it wonderful when you put pieces together about why you do something/feel something, and it makes *sense*!!!

[Joseph]

Thank You! My six year son is going to be tested for Sensory Modulation Disorder. A Pediatric Behaviorist believes that he may have a slightly underdeveloped limbic system. This subject is fairly new to me, but if I understand it, then his SMD falls under the "poor modulation" classification.

Of course, when I sat through the appointment listening to the Doctor's opinion about my son, I almost had tears in my eyes. It was like someone was reading my life story as a child.

I have been diagnosed with ADD as an adult. I can't tell you how many nights I can't fall asleep because of sensory overload. I can tell you I cope with this by doing aerobic exercise, meditating, journaling, etc...

But my real question is can the brain be rewired, so to speak, through different exercises, holistic treatments, etc.?

Where can an adult find the most current research/opinions on the SMD?

What would Jung and Freud write today in light of this new research and understanding of the brain? I am not discarding Jung and Freud's incredible work on the human psyche, but it seems that one must approach the "Shadow" from a multitude of directions.

[Christine]

First just want to say thanks. I have ADHD w/ sensory issues. About the disorder vs. difference thing - when it disrupts your life it's a disorder, it you like having it 90% of the time and people just smile about the oddness it's a difference. I have a disorder. Not to say that other's shouldn't shift and be more compassionate or understanding, but it is an invisibile disability.

Now, can the brain be re-modulated? Re-trained? Re-wired? Somewhat is the answer. With the right kind of input and the right kind of repeated skill development it can change - however, you are not likely to see a 'cure,' just an improvement in functioning. It's like my doctor said about my eyesight. I am severely near-sighted. He said that since everyone get's far-sighted with age, I will simple get 'less near-sighted.' I will never get to 'normal.' That's okay. It is what it is. We all have work with our limitations.

Blessings to you all.

[Kath Smith]

Hello Tertia

I am a Capetonian now living in the UK where since 2000 we have used Sensory Integration Therapy to support adults (and children) with mental health difficulties including anxiety and depression, but also PTSD, addictions and self harm. The Sensory Project, our website is about 'spreading the word'.

[kath smith]

Here is the web address for Sensory Project:
www.sensoryproject.com

[Sandy]

Most of the comments I see here are related to children, but I, myself am looking for (hope I guess) that some of my defectiveness/failures can be attributed to something like SID. I took the plunge into anxiety meds back in the 80's and have increased dosages several times. I also sought out help for depression and ADD in the last couple of years. I can remember having issues back in grade school and I have never been very successful in any of the jobs I have had (there was always something that I could not measure up on). I am very creative and I scored 136 on IQ testing. I am very conceptual and can think outside the box. However, in today's corporate world the only thing that matters is production/speed/numbers. I have a higher than average understanding of software applications and yet I AM A SLOW PROCESSOR, and no matter how hard I try!!! I cannot crank out the number of tasks that coworkers do. I know I am not a good fit for the position that I am in but I do not have the options of starting over and over and over. I am running out of career time. I don't really know what I am hoping to get out of this comment except maybe a referral to some advise on either overcoming these disabilities or somewhere I can turn to for support(advocates) before I am forced out of my job. Is there anything out there that might qualify me for rehab or disability status that might help me protect the years I have left in the job market? I'm willing to try most anything and willing to work hard at making myself more marketable.

[Dustin]

Hey I coach football in America and I had never heard about this disability until this year when one of my players mom's came up to me and said that her son has this disability. She started explaining a lot of things that her child has sensory issues with... main one is gravity and sound... says that when a pin drops to him it sounds like thousands of them... and sometimes he just doesn't feel gravity and need's to feel someone else touching him... he also likes to just touch people from time to time to just touch them no real reason in particular... when she started listing these symptoms as I will call them I started noticing a pattern in myself... I sometimes don't feel gravity and Im very touchy feely with people... when I meet someone I generally hug them... Im always seeking some kind of human contact... thing I am wondering is if it is hereditary and is there any relation to dreams? if you can message me back at dbamann@hotmail.com please

[Chris]

I think you all are evolving into super humans. Just embrace your gifts. My son is currently being diagnosed with this and from the moment I saw him I knew he was an angel.

[amanda]

I live in indiana and I wish there were support groups for this disorder where I live.My 10 year old daughter cant stand to hear people breath or hear the dog pant or see people rocking in a chair or swing.She cant stand whistling or normal movements of people.They give her ear plugs at school but sometimes that dosent help.She dosent eat normal food,only certain things and the same with clothes.Theres no OC therapist around here that deals with this.Been living with this for years.Any suggestions as to somethig that would help?

[christy]

My son was diagnosed with this (he's 17). we've always thought he had a problem but couldn't figure out why. he would scream when planes when overhead at a young age. hated bathes and wouldn't go swiming. was terrified of rain and wind. we had full psychological testing done over the summer because he has been failing in school even though he is very intelligent, he's started cutting (self mutiliating), and has always isolated and had difficutlies with peers. He was diagnosed with Sensor integration disorder / anxiety and depression. He was also tested for IQ and found to be of high intellegence, which they said can go hand in hand with these disorders. I've since then looked into my past and found many similiarities. I have constant migraines triggered by sound, sight and smells. i can't stand the sound of a fan or the clicking of someone typing or chewing or the crinkling of a bag. i have a very hard time being touched which makes things difficult in a marriage, especially when its not that i don't want to be touched ( i want the closeness)....it just makes my skin crawl. So i have absolutely NO doubt it is hereditary. I also have a very hard time finding any solutions for adults and older children. Good luck everyone...its nice to know we're not alone.

[Shayla Hogg]

I

[Shayla]

I was diagnosed with with this same disorder five years ago. I always had felt wierd and not in tune with those around me, like I was always off the mark. I have had treatment and it really does work. Physical therapists can help too. It is nice to read that that others have gone through the same things as I have. Not that I enjoy someone struggling but that I am not alone. I too have a hard time with jobs and touch. There is a great book called "Too loud, too bright, too fast, too tight" by Sharon Heller, it is really great and one of the few resources for adults. I am personally wanting to get a masters degree in OT, learning more about the disorder and then having a clinic that is capable of treating adults, because it doesn't go away and trying to find resources as adults is near impossible or very expensive as insurance companies consider it a childhood condition. I also found a nice holistic treatment center that was useful, but I am sorry to say it still never leaves totally, just becomes more tolerable. I wonder did the rest of you have limited development. For example: I could read and comprehend reading at a early age and speak in grammitically correct sentences at three but it took me until I was in seventh grade to pronounce letters in the alphabet and in high school I still struggled putting thoughts into words. I had to rehearse everything I said and even then it wasn't always understood right. I would possibly like to talk to another person about these things, so I can honestly have a conversation with someone and have them understand where I am coming from.

[Ann]

I'm trying to figure out if this is the same thing, but I cannot wear structured wool/felt hats. The texture of the wool is bad enough; I don't like touching it. But what gives me convulsing chills down my spine, is when the hat is on my head and I HEAR the fabric rub up against another fabric, like the back of my coat. I can feel it in my teeth, I shake and my speech slurs. Even the very thought of it sends shocks through my system. Then the hat goes flying across the room and that's it. There's something about it being on my head and around my ears that amplifies and concentrates that disgusting sound. Now, I could go through life avoiding them, but, you see, I LOVE hats. I love them enough to risk that sensation just to try it on (carefully with no rubbing). I want to see if there is a way to get over this. There's just never enough time to analyze the sensation--it's so quick and awful. Sometimes I can get away with it if I hear the sound but it's a different fabric, like terry cloth (and I just got out of the shower). Perhaps there's something there I can start with. Last weekend I did manage to buy a very lovely wool hat (I keep trying--I give them to my mother if I cannot wear them) but the brim in the back is short and I wear a long haired woolly scarf (no issues) with it and it cannot contact my coat's collar. So far, so good.

[Len Savage]

I just want to know if my condition has a name and if there is treatment for it. I come from a very disfunctional
childhood (family). I can not stand people eating. It can be apples,potatoe chips,cereal, chewing gum,anything that makes noise. I can not stand people movements,rocking in a chair,swinging their legs while sitting, tapping fingers and on and on and on. If I hear a distrating noise and find out a
a person isn't making the noise I seem to be able to tolerate it better. This has affected my life, my social life, my work,my family and my marriage.
I was beat alot as a kid for eating,moving my mouth or just being around moving period. I have now discovered terms like PTSD, Hypervigilence, SID etc.
I hope I'm on the right track.
I have seen two other comments on this page that somewhat compare with my situation. I am so gratful to know that I'm not alone. That in it's self is helping me.

[liz]

My life has actually been very difficult because of this. I am 30 years old now and I am frankly tired of hearing the "we are evolving into super-humans" speech! I did not have some kind of early diagnosis and my parents thought I was emotionally screwed up, which I eventually became in my later teens. I have a rather extreme case of SPD with many problems with auditory processing and visual processing. I do not have an unusually high IQ, actually it's quite low, as I don't solve standardized tests well either. Anyhow, I thought this blog article was helpful considering most of the information on the web is geared toward concerned parents of struggling children and I can't seem to find much information about adults with SPD.

I would like to see more info, or at least a group or two with adults who have this. It's really no way to live. Honestly.

[Jo]

I've felt like such an odd ball my whole life and just put my touch problems down to being a little strange or quirky but, deep down always felt a sense of something not being quite right. All my life I have had a problem with clothing, especially tight clothing, I'm always tugging at it and adjusting the sleeves- I try to wear comfortable clothing as often as possible and when at home I'm most comfy in baggy lounge pants and a t-shirt. Tags bother me incredibly! I despise having my shoulder blades touched, it takes me around two hours, sometimes more to fall asleep at night because of my constant tossing and turning because the wrinkles in the sheets are bothering me or my bones feel like they are being poked by my mattress (which is a band new super soft mattress), my Fiance spooning with me bugs me, it's a constant dance of me wriggling around until I finally fall asleep. I dislike bright lights- the list goes on.

Thank you for this interesting blog, it have found some clarity here.

[Jo]

P.s- I have always had incredible hearing, to the point where it is a bad thing, what appears to be quiet noise or normal noise level sounds incredibly loud to me. I can't stand the sound of people eating and I often get aggravated/upset by the noise and complain or leave the area. It's only certain noises though since I do enjoy listening to loud music in the car. Is this related to sensory S.I.D?

Thank you in advance!

[Sandy]

I was reading post about OCD. sometimes feel like i have it and read the words sensory processing disorder (SPD). a thought came to me...that may be me. i hate loud sounds...people eating, scraping silverware on the teeth or on dishes, platic bags sound...list goes on and on...i hate bright light. i always keep things dim. not much for the sun. hate tags on clothes, certian fabrics hurt my skin. i eat the same food everyday. don't like strong tastes, so i eat mostly bland foods. i always say i hate food. i want to eat so many things, but i just can't. when certian foods are being cooked, i always say it stinks. hate the smell of meat, raw or while it is cooking. hate the smell of onions and peppers. my list could go on forever. i just wanted to state i thought i was just being a pain. this made me think i may have SPD. i thought i was weird. i'm 32 years old and looking back on my childhood, i believe i have had this most of my life. i threw huge tantrums over what seemed to be nothing. if there is a support group on line, a web address would be nice to talk with others. i have a hard time sleeping because my mind always races. i have constant headachs which make me lazy...i hate it. i would love to fix the worst problems. this may be a reason i get depressed.

[Marc]

Can someone please help me, whats the deal with me the following get me spitting with rage
1.people eating, especially males
2.cars going past
3.noisy restaurants, I can hear multi conversations at once all really loud in my head
4.people tapping plates
5.people rustling bags
6.middle aged women laughing
7.drills
8.people chewing gum
9.loud coarse accents
10.beeps at supermarkets
11.people smoking
12.most people laughing, seems so fake, I am not sure whether most of this is me disliking the horrible smug satisfaction of people. Funnily enough children and females mostly dont annoy me, apart from teenage girls sometimes

oh my it goes on and on

in contrast I absolutely love
1.natural sounds ie ocean,rain,wind,animals(apart from barking),music,birds

I know I have very good hearing and can hear higher sounds than many people

do I have a condition. I am 38 and think I need help

[Anjali Nelson]

I know I'm late to the party but just wanted to chip in. Thanks for posting this. I have always known there was something "odd" about my sensory processing (can't STAND to be touched in any way on the left side of my body - all my family have known this since early childhood). Also can't stand wall-to-wall sound, "busy" colors, and find crowed environments very disorienting (when I was little, I would go into a kind of trance in large crowds). I also need a very long time to unwind before I can sleep and sleep better alone. I had also made the connection between general anxiety making the sensitivities worse, but thank you for illuminating that often what I labeled as "stress" was more accurately accumulated sensory overload from the day. I homeschool 4 children and am constantly surrounded by their activity - by the end of the day I'm ready to go be ALONE for several hours daily. I also have a son on the Autism spectrum with SID, and possibly a brother (undiagnosed) with both AS and SID. Thanks so much for reminding me that this is REAL and I'm not crazy
.