Wednesday, November 28, 2007

Intervention for adults who have sensory processing disorders

I received this email today, and I thought it was a great question:

I am an adult who has Sensory Integration problems that were diagnosed three years ago. I also have central auditory processing disorder and was recently diagnosed with Asperger's. I have had some OT in the past for the SI difficulties, and was wondering if you knew of services for adults with these problems.

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Sensory integration refers to an 'unseen' process that has not yet been clinically defined - people have suggested that it may be a neurochemical problem, or perhaps a neuromigrational problem, or perhaps something else entirely. However, occupational therapists are claiming that it is SOMETHING that has to do with neurological processing - a lot of current research is looking at sympathetic and parasympathetic sensory processing of information.

There are also some occupational therapists who claim that the prevalence of SPD can be as high as 5% (in the 'normal' population), and I have seen this number posted around the Internet, but have not been successful in finding any source documentation for this claim. The prevalence may be higher in populations of people who have other developmental disabilities.

So you see the problem here is that we have a relatively undefined problem that is occuring with a relatively undefined prevalence - and there does not seem to be face validity to the concept that 5% of all adults are walking around with some kind of sensory processing problem. The problem seems to be notable in children but why does it seem to mediate with age/maturity? Is it likely that if there was some structural neurological problem that it would all just 'disappear' with age?

Now I don't doubt that some people process sensory information differently than other people. I also don't doubt that people have different learning styles and different neuropsychological profiles that cause them to have strengths and needs in relation to their abilities. I am not sure that these all represent some distinct clinical disorder.

I spent quite a bit of time researching sensory processing abilities of adults, and I even spent some effort in trying to link sensory processing patterns with known neurophysiologic patterns of hypersensitivity (complex regional pain syndrome). I found that adults who had complex regional pain problems all had differences in the way that they processed sensory information but that those differences were not in the directions that one might expect (toward hypersensitivity, for example).

Yes, I am guilty of not attempting to publish my own doctoral work (perhaps I will someday, with a larger sample). Very little else has been published about adult sensory processing disorder. For as little as we know about sensory processing problems in children, we know even less about whether or not this is an issue that carries through to adulthood.

Now I know that I will undoubtedly get emails from some people who are 'treating' adult SPD and they will provide evidence that they learned about it from a video or from some newsletter that is not peer-reviewed. I will state in advance that I can't consider these as adequate resources of information.

So for people who receive this 'diagnosis' I encourage them to sit with their occupational therapist and discuss what the functional problems are that are interfering with daily life functioning. I would encourage people to use tried and true (and evidence based) interventions relating to anxiety control, situational coping, and stress management. Simple behavioral techniques can provide structure and sameness that can help ameliorate problems with sensory modulation. Education about activity participation and organization/planning around potential 'triggers' or 'stressors' also seems to be pragmatic and functional.

Please note that none of these interventions denies the presence of anyone's sensory processing disorder. Rather, I am just encouraging the use of rational intervention that is time limited, functionally based, and directly oriented to the individual's problems.

I would also strongly discourage anyone from trying unproven 'sensory' interventions that involve 'brushing' or 'deep pressure protocols,' 'therapeutic listening,' 'Brain Gym,' or whatever else happens to be popular at the moment.

I am interested in anyone else's ideas on this topic, and will graciously publish all comments in full.

25 comments:

Celia said...
This comment has been removed by the author.
Anonymous said...

My Husband has this disorder. It is a VERY hidden handicap. Soo much so, the people who have it, don't even realize it. As he got older, he compensated for his "quirks". He was/is a sensory seeker towards physical contact. That explains why he played every sport available as a child and still does. His over abundance of physical energy and roughness was considered "just being a boy" behavior as a child. He has many so-called "OCD" traits today. Non-the-less, he's a highly functioning sucessful individual. He went on to get his Teaching degree. His degree is in Physical Ed/Health and he is also a Football coach. Go Figure! I feel that everybody can look back on our chilhood and see what our weaknesses were only to turn them into our greatest strenghts as adults.

Chris said...

So if it is a "disorder" and if it is a "handicap" and yet he is a highly functioning successful individual - that must mean that this "condition" can be adapted to.

Logically, one could assume that there must be others who can't be highly functioning and successful because not everyone can adapt to "conditions." Where are these people? And who are they? I am still trying to find a sales executive who has a meltdown in the Monday morning meeting because his socks feel wiggly.

Conversely, if everyone who has the "condition" can adapt and be functioning to some degree - is it really a "condition" or is it just a series of preferences, traits, or characteristics?

Like say, baldness? Or stature?

Anonymous said...

Well Chris, I'm no expert, but I live with it every day. My Husband and both of our Daughter's have this disorder. I didn't reveal it before because it may be TMI. It is no secret that the brain is not fully developed until the early twenties. Our "voice of reason" and self-control is the last to fully develop. People who have SID learn new ways to cope through experience, trial and error, and the more mature brain we develop as adults helps as well too. Not that the sensations and quirks "go away". People with this disorder are finally hit with the virtue of social graces and won't "jump up" in the middle of a business meeting because the seams on their socks are driving them crazy. Mainly because children/adults with SID learn what socks will or won't bother them. My Husband will not wear jeans. Jeans drive him crazy! He wears cotton-twill khaki pants or shorts all the time. As for shirts, he has to wear "Golf" shirts that draws sweat away from the body and they have a real smooth texture. His quirks and preferences have always been a running joke in our family. We just assumed he was a control freak with OCD or certain phobias. Yes, we all have hang-ups. But when those hang-ups are too numerous to count, it becomes a problem. His hang-ups do cause him stress and thus, the family stresses too. Prefences, traits, whatever you want to call it should not reach the point where it causes the person stress and the people around them.

It was not until my middle Daughter was diagnosed with the disorder that I had the epiphany that my Husband and oldest Daughter had the disorder as well. My middle Daughter changed clothes constanly as a toddler. It was if she never could find a comfortable outfit. She had to wear a particular kind of sock and they had to be inside-out. She has to use a particular brush to brush her hair and she has to brush her hair a certain way and a certain amount of time. She will have an emotional meltdown if she can't find "that" brush or can't find "that" kind of sock. I would be here all day if I listed all her "preferences". The most alarming symptom was her balance. That child could trip standing still. I knew something was "off". I just couldn't put my finger on it. I searched and researched chilhood disorders and their symptoms, but she never fit the profile. After 2 years of searching, I stopped searching "actual disorders" and I Googled her quirks, "refuses to eat and hair chewing". SID was the first disorder that popped up and it fit my Daughter perfectly!!! I'd never heard of it before. I was aware that people who suffered from disorders on the Autism spectrum had these symptoms but I easily overlooked it because I knew she didn't have Autism. SID is strongly seen with other disorders. My Daughters and Husband have primary SID. My oldest Daughter has hypesensitive SID. My Husband has hyposensitive SID for the most part. My Husband's SID symptoms have tremendously helped our oldest Daughter with her disorder. She was a "sensory avoider". He is a "sensory seeker". Opposites attract in this case. She hated physical activities. She couldn't stand for her feet to be off the ground. She didn't learn how to ride a bike until she was 7-yr-old. Very late by most standards. His SID symptoms helped her to overcome her own personal symptoms. Does that make sense? My middle Daughter is a sensory seeker and very much a "crasher"! Her sense of hearing is haywire. The sense of hearing is much more complex than just an organ used to process sounds. It controls balance and the sense of body awareness. She's only 5 and just started Occupational Therapy. She now wears a weighted belt around her waist that keeps her center of gravity in check. It helps a great deal. She still has a long way to go though. My Oldest Daughter never got a formal diagnosis. I didn't feel like it was necessary since she dosen't exhibit symptoms now. She is perfect and thriving. She is an academically gifted child that does wonderful in social settings. She is a competitive cheerleader who is the "stunter". She is the one who is flown up in the air. She's come a long way from not wanting to peddle a bicycle because both of her feet would have to be off the ground. My oldest Daughter never exhibited worrisome symptoms. Her quirks were harmless. My middle Daugter is much different. I see behavior in her that could negatively affect her when she gets older. Great parenting and circumstances pulls most of these children out of their "funk". But, being a great parent to my 5-yr old is not enough. She most definately needed/needs outside help. I need someone who is knowledgeable about this disorder who can equip me with tools to help her. I want her to reach her full potential! I don't want it to hinder her or hold her back in any way. I see soo much brillance in her waiting to be unlocked. My Husband is now 40-yr-old. He's an old dog who won't learn new tricks. Although anti-anxiety would help him a great deal I think...haha.

Anonymous said...

I posted the 2 comments from earlier. I just read your profile and realized you're an OT. I read your blog briefly without paying attention. Sorry. I'm a Registered Nurse and would've used more of that great medical terminology if I'd known...haha. But seriously, if you have any questions about this disorder let me know. I may throw some your way as well if that's ok. I've just started the OT journey with my Daughter and don't know all that I'd like to know.--Brenda

Chris said...

I apologize if my 'inside baseball' commentary on whether or not this type of problem constitutes an actual 'disorder' is confusing.

The purpose of a diagnostic classification system is to set a standard point of measurement against which signs and symptoms can be analyzed.

While it is evident that some people have difficulties with sensory processing, it is still questionable if this represents a 'primary' disorder. We don't have any diagnostic tools that help us make differential determinations between a 'primary' sensory processing disorder and other problems like Bipolar Disorder, Autism, ADHD, or any other of many many different diagnoses that include similar signs and symptoms.

Additionally, when people have signs or symptoms of 'something' and they can't be classified or diagnosed with another condition - the question remains if this 'something' actually represents a disorder or simply a series of traits. As of this date, there is no codified set of diagnostic criteria that relates ONLY to a sensory processing problem.

All of this is important because we are in the best position to formulate intelligent and directly targeted interventions when we have a clear understanding of the actual underlying problem.

As a good example, today I explained to a teacher that a child who is fidgety, impulsive, and so-called 'sensory seeking' indeed does not have a sensory processing disorder. Actually, his medical record was very clear in identifying that he had lead poisoning - a condition where there is no scientific evidence that any amount of 'brushing' or any amount of 'therapeutic listening' or any amount of 'Brain Gym' exercises will likely impact significantly. In this case, there is much greater clinical utility in understanding the nature of the developmental problems by understanding lead poisoning. Getting diverted down the path of a 'sensory processing disorder' causes us to lose sight of what the real issue is.

Anonymous said...

I believe a large number of adults who suffer with this condition/disorder/"something" practice avoidance quite deftly, as I myself do. If you want to find adults that aren't coping reasonably well, don't look in functional successful environments, ie that of a business exec. You'll have to find them hiding in their houses barefoot I suspect.

Chris said...

12/30/09

Although the anonymous poster above describes some sensory processing differences I am not certain that this can be evidence of a primary sensory processing disorder.

Accepted and evidence based interventions for people who have panic attacks/agoraphobia (or school phobias in children) include SSRIs/SNRIs and cognitive behavioral therapy (as described above).

Anxiety disorders have high rates of co-morbidity with other disorders, and to date there is still inadequate evidence to identify sensory processing disorder as one of those other distinct conditions. Clinicians need to understand the co-morbid conditions so that interventions can be targeted and effective.

Rather, it is likely that many of these conditions manifest themselves in behavioral pathways that 'look like' sensory processing difficulty. Some of those pathways are actual sensory processing differences while others are simply 'look-alikes.'

Again, the reason why this is important to distinguish is because diagnostic accuracy is absolutely critical when attempting to formulate a correct intervention plan. If a clinician doesn't understand the nature of a problem how can they be expected to develop a solid intervention plan?

So again, this post is not about denying the presence of anyone's sensory processing differences - rather to identify that there is much still to learn about these differences and how critically important it is to make differential clinical diagnoses so that appropriate interventions can be provided.

Best summary I know of for clinicians to educate themselves for understanding children with these difficulties is referenced below.


Dr. Chris

References:

Connolly SD, Bernstein GA; Work Group on Quality Issues. Practice parameter for the assessment and treatment of children and adolescents with anxiety disorders. J Am Acad Child Adolesc Psychiatry. 2007;46:267-283.

Jessica said...

I have poor motor skills. Teachers from grade school claimed that I was slow to learn cutting and hand-writing. My multi-tasking skills are also weak. These issues have affected my adult life,as I can not drive safely. I've also been accused of being lazy at different jobs for not being able to multi-task. Loud noises and crowds cause me to feel anxious, and they also give me headaches. I hate being barefoot. I even wear socks to bed. I also have a hard time with short-term memory. I resorted to flashcards and excessive note taking in school, and many to-do lists can be found throughout my home. Is it possible that I have a sensory disorder? What help is available? Is there occupational therapy to help people like me with driving cars? People in my family mentioned awhile ago how these are signs of Asperger's Syndrome. I don't find that I have the other symptoms associated with Aspergers Syndrome. If you have any helpful information, please let me know. I'm trying to find answers.

Susan said...

I've been a respiratory therapist for 15 years and recently went on a trip only to return with 30% nerve damage to the right ear resulting in disequilibrium. SOT revealed that I also have ASPD. I was treated for Vertigo which is gone now, but have a swaying sensation. Does anyone else with ASPD have this? I've read the other notes. I share your frustrations over other symptoms as well. Susan

Chris said...

@Susan: Disequilibrium associated with (presumed) barotrauma is not the kind of 'sensory processing disorder' that is referenced in this article. You mention recent travel so I will answer based on the likely scenario of a pressure-related trauma (flying, climbing Everest!, or scuba diving). One does not develop ASPD, if it exists, after traveling.

If you are having persistent vestibular symptoms I encourage you to speak to your primary care provider who can refer you to a PT or OT who treats adults with vestibular disorders.

There is a substantial body of knowledge and evidence-based interventions for post-traumatic vertigo, BPPV, and similar disorders. You will not likely find your solutions in literature or investigatory interventions on ASPD - which if it actually exists, is an entirely different issue.

musicalmsc said...

I have not been diagnosed with SOD but from my current symptoms and my current medical issues, I believe I have this disorder. It really would explain a lot of things to me from my childhood to now. At this point in my life I was thinking that I was going crazy, but I was reading one of my nursing books and there in front of me were the unexplained symptoms I have been having recently: sleeplessness, anxiety, new onset hypertension, disorientation, racing thoughts, fatigue, scattered attention, irritability, restlessness. Now I suppose I can get help with this.

Chris said...

Dear musicalmsc,

If you are a nursing student you will soon learn that you shouldn't be diagnosing yourself after reading your books.

Instead, I encourage you to discuss your symptoms with your doctor. These things you are describing might have nothing to do with sensory processing. Good luck.

Anonymous said...

Could SPD/SID not be a primary disorder but more of a (please forgive the lack of any technical finesse for I have not the background) primary brain foundation? Here are just some thoughts I have gathered while researching online since being given this diagnosis myself (sensory avoidance) two months ago.
To me it just seems like SPD is a mutation of "normal" brain geography. Behavior from this is much more noticeable in children because they don't have the mature brain's abilities to negotiate the stresses and abnormal behavior associated with SPD. Then as we grow, with the balance of nature vs nurture, this different lens we look at the world through is layden with the strengths and weaknesses from our parents and then secondly our environment. That SPD in adults should not be treated as primary diagnosis due to the solidification of how the individual interfaces with the world, but should be part of complex therapy to defeat the problomatic neurosis and exalt the strengths. Thanks, I'd love to hear your comments.

P.S. On a personal note - Compression therapy is awesome. I've been self applying it since I was 3 and now I'm 42. One of the few things that can truly calm me down, to the complete confusion of my parents.

Kerri said...

I have very similar symptoms or problems or whatever that musicalmsc described, plus others (like severe difficulty in processing audio information, feeling very overwhelmed and unable to function when confronted with small amounts of stress, or when with several small children, and recently hypersensitivity in my body, like tingling all over, light touches bothering me excessively, and so on). I have been diagnosed with ADD previously, and also panic disorder (or whatever they're calling it now) and I'm mostly wondering which kind of doctor to see. I've yet to have a regular doctor that understood the sorts of problems I have, so I'd like some tips from someone who understands or at least acknowledges these struggles with trying to get competent professional help.

Chris said...

Dear Kerri,

I encourage you to discuss your concerns with your primary medical doctor. If you have Panic Disorder then your primary doctor should serve as your gateway to other relevant providers (counseling, psychiatry, occupational therapy) depending on your individual needs. As with any issue that you bring to your doctor, if you are not having success in partnering with your primary care MD to make good decisions than you may want to consider a different primary MD. Best of luck to you.

Nancy said...

I realize this is an old thread but I just ran across it and have to agree with Anonymous who wrote: "I believe a large number of adults who suffer with this condition/disorder/"something" practice avoidance quite deftly, as I myself do. If you want to find adults that aren't coping reasonably well, don't look in functional successful environments, ie that of a business exec. You'll have to find them hiding in their houses barefoot I suspect". I am one of those hiding barefoot in the house. I have held various jobs to a somewhat successful degree but I think only because I have become used to the idea that people view me as an "odd ball" and have developed quite a few of my own techniques for covering my disorder and/or explaining away my odd behavior. I can guarantee mine is not a matter of preferences. Ha, how ludicrous that sounds! As if I would prefer to leave a gathering of my family and friends simply because I cannot tolerate for any length of time, the buzz of florescent lights overhead? Odd, when lights are not bothersome to anyone else. I do not believe the buzz is even audible to anyone else. On the other hand, if I could turn off the lights, I would be perfectly content and stay as long as anyone else. The darkness holds no evils for me but then, of course, everyone else, the people who process sensory stimuli normally, would naturally turn the lights right back on and think me crazy for preferring them off. See the struggle? See the reason for adults keeping this disorder hidden? This is just one minute example of the daily struggles with which one with this disorder contends. A matter of preferences? No. Absolutely, no. There is a huge difference between "Eww, I don't like that and I won't have it because it doesn't suit me" and "I sincerely wish I could, I would love to if I were able, but I am not.. I am sorry, I am just not able."

Anonymous said...

My daughter is almost 26 years of age and has had struggles all her life, which were either misdiagnosed or undiagnosed. With symptoms so rare, which doctor could I take her to who would understand, especially back in the 1980's and 90's? She was tested for dyslexia when very young, but they said she was borderline ADD, and offered no help. She had struggles in school with learning certain things, but excelled in others. She is a gifted artist which appeared when she was only 4 years of age. She has won several 1st place international art competitions through school. Now, at 25, she suffers, immensely, with uncontrolled bad thoughts, extreme sense of smell to the point of scratching herself and causing self harm. We, my husband, and son who is 21 now, suffer right along with her. We now cannot cook in our home, although, sometimes she cooks and there's not a problem. She says she has to mentally prepare herself for the smell or it is intolerable. She is also very sensitive to sound, has discontinued to attend church because she cant stand the sound of all those people together talking, or the preacher constantly talking. Our whole household is under her control as we try to suppress her "triggers" and keep peace in our home. We cannot even begin to discuss the issue with her because she has a panic attack. We've tried to suggest her going to a doctor, but she cannot deal with discussing the details. After an episode of hysteria, she cries and apologizes. Please help.

Christopher Alterio said...

Dear Anonymous,

I am sorry that your family is struggling with this situation. Please encourage your daughter to schedule an appointment with her primary medical doctor so that s/he can make an appropriate referral. It is likely that your daughter needs a full assessment by perhaps a neurologist or psychiatrist and also an occupational therapist. As she is an adult you have little choice other than to provide gentle encouragement and information that her problem will not likely be solved unless she seeks help. She should start with her primary MD. Additionally, you and other family members may benefit from visiting with a family counselor to explore these issues and develop strategies as appropriate. Best of luck to you.

Anonymous said...

Does anyone know if you can have a sudden onset of SPD from a viral infection? I had a virus in Feb and I am now having major sensory overload issues with sounds, sight and some with temperature. Could this be an acute episode that will resolve? If I get over stimulated then my brain starts to shut down and I have nearly passed out. Thoughts?

Christopher Alterio said...

Please go see your primary care provider or a neurologist.

Anonymous said...

I love hearing what "works" as it is as unique and varied as all people are!!

Anonymous said...

Unbelievably hard....our 22 year old is learning and maybe with maturity is improving in how she responds ? Food smell problems are much worse than they used to be. She hates vhurch- smells, sounds, too many people, etc. She goes anyway but it costs her a lot. Lots of prayer. Lots of trying to implement peaceful non stimulating times in between hard stresses....praying for you!!

Anonymous said...


I have what I would consider extreme sensory problems. Every single sense is magnified, and it is painful. I don’t like the smell of lot of things that are cooked, especially meats and eggs. I can’t wear any products with perfumes. I prefer low lit rooms or darkness. Most definitely can’t go outside without sunglasses. A person talking at regular volumes is all too percussive. I’m a professional musician who has had to cancel because I can’t tolerate the noise. I don’t like people to touch or brush past me. I don’t wear jewellery. The list goes on. My quality of life has improved after seeing a psychiatrist who prescribed medication, and I am getting around much better. Without it I would have quite literally thrown myself in front of a train. I understand why some wouldn’t want to class it as a primary problem, as I myself have numerous other issues. Let’s face it, who only has one. Nevertheless, it is all too real a problem for some people.

Cat

Christopher Alterio said...

Hi Cat, thanks for writing. I am glad that your MD was able to provide some solutions for your difficulty. The issue here is not if problems are 'real' or not. The issue is that some unscrupulous therapists have created a cottage industry based on a concocted 'disorder' and that many of the 'solutions' that are peddled have no evidence to support them. The blog posts cautions against these kinds of unproven interventions and encourages people to work with their MDs and other ancillary service providers to try evidence based and functional approaches to their difficulties. It sounds like that is precisely what you have done.