090: Sensory processing disorder

This episode comes to us courtesy of my friend Jess, whose daughter has Sensory Processing Disorder (SPD) and who is on a mission to make sure that as many parents as possible learn about it. She says that every time she describes it to a parent they realize that they know someone who exhibits behavior that looks like SPD that warrants following up.
I have to say that I was highly ambivalent about doing this episode, because I don’t usually deal with topics that result in medical diagnoses as I’m (obviously) not a doctor. But the more I looked into this the more I realized that helping parents to understand the mess of research on this topic is exactly the kind of thing that I usually do on this show, and that an episode on this topic could probably be useful to a number of you.
And here’s the love letter to John McPhee that I mention in the episode
Jump to highlights
01:21 The story behind this episode: a listener’s daughter and her path to an SPD diagnosis
03:19 Origins of the field: Dr. A. Jean Ayres and her book Sensory Integration and the Child
05:33 Dr. Lucy Jane Miller’s three main pattern types and subtypes of SPD
08:16 Where SPD is thought to come from, and why parents shouldn’t blame themselves
09:37 Distinguishing SPD from Dr. Elaine Aron’s highly sensitive person concept, and a note on unintegrated reflexes
12:19 SPD and autism comorbidity
12:36 Why SPD isn’t in the DSM-5, and problems with Dr. Ayers’ own diagnostic test
20:11 What SPD treatment looks like in practice: hammocks, brushing, weighted play, “heavy work”
26:57 A 2014 meta-analysis of 27 studies: some positive signals, but hampered by small samples and weak methods
28:57 A meta-analysis narrowing 11,619 citations down to just four studies on the Wilbarger protocol
35:19 Why insurance companies like Aetna classify sensory integration therapy as experimental
38:50 Practical guidance: how to approach treatment like a scientific study if you decide to proceed
References
Aetna. (2018). Sensory and auditory integration therapy. Author. Retrieved from http://www.aetna.com/cpb/medical/data/200_299/0256.html
American Academy of Pediatrics (2012). Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics 129, 1186-1189.
Anderson, S. (2017, September 28). The mind of John McPhee: A deeply private writer reveals his obsessive process. The New York Times Magazine. Retrieved from https://www.nytimes.com/2017/09/28/magazine/the-mind-of-john-mcphee.html
Aron, E.N., Aron, A., & Jagiellowicz, J. (2012). Sensory processing sensitivity: A review in the light of the evolution of biological responsivity. Personality and Social Psychology Review 16(3),262-282.
Aron, E.N. (2002). The highly sensitive child: Helping our children thrive when the world overwhelms them. New York, NY: Three Rivers.
Ayres, A.J. (2005). Sensory integration and the child: Understanding hidden sensory challenges. Los Angeles, CA: Western Psychological Services.
Bhopti, A., & Brown, T. 92013). Examining the Wilbargers’ deep pressure and proprioceptive technique for treating children with sensory defensiveness using a multiple-single-case study approach. Journal of Occuaptional Therapy, Schools, & Eaerly Intervention 6(2), 108-130.
Bodison, S.C., & Parham, L.D. (2018). Specific sensory techniques and sensory environmental modifications for children and youth with sensory integration difficulties: A systematic review. The American Journal of Occupational Therapy 72(1), 1-7.
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Hall, L., & Case-Smith, J. (2007). The effect of sound-based intervention on children with sensory processing disorders and visual-motor delays. The American Journal of Occupational Therapy 61(2), 209-215.
Hebb, D.O. (1955). Drives and the C.N.S. The Psychological Review 62(4), 243-254.
Hoehn, T.P., & Baumesiter, A.A. (1994). A critique of the application of sensory integration therapy to children with learning disabilities. Journal of Learning Disabilities 27, 338-351.
May-Benson, T.A., & Koomar, J.A. (2010). Systematic review of the research evidence examining the effectiveness of interventions using a sensory integrative approach for children. The American Journal of Occupational Therapy 64(3), 403-414.
James, K., Miller, L.J., Schaaf, R. Nielsen, D.M., & Schoen, S.A. (2011). Phenotypes within sensory modulation dysfunction. Comprehensive Psychiatry 52, 715-724.
Konicaraova, J., & Bob, P. (2013). Asymmetric tonic neck reflex and symptoms of attention deficit and hyperactivity disorder in children. International Journal of Neuroscience 123(11), 766-769.
Konicarova, J., Bob, P., & Raboch, J. (2013). Persisting primitive reflexes in medication-naïve girls with attention-deficit and hyperactivity disorder. Neuropsychiatric Disease and Treatment 9, 1457-1461.
Koziol, L.F., Budding, D.E., & Chidekel, D. (2011). Sensory integration, sensory processing, and sensory modulation disorders: Putative functional neuroanatomic underpinnings. The Cerebellum 10(4), 770-792.
Lane, S.J., & Schaaf, R.C. (2010). Examining the neuroscience evidence for sensory-driven neuroplasticity: Implications for sensory-based occupational therapy for children and adults. The American Journal of Occupational therapy 64(3), 375-390.
Mailloux, Z., May-Benson, T.A., Summers, C.A., Miller, L.J., Brett-Green, B., Burke, J.P., Cohn, E.S., Koomar, J.A., Parham, L.D., Roley, S.S., Schaaf, R.C., & Schoen, S.A. (2007). Goal attainment scaling as a measure of meaningful outcomes for children with sensory integration disorders. The American Journal of Occupational Therapy 61(2), 254-259.
Masgutova, S., Akhmatova, N., Sadowska, L., Shackleford, P., & Akhmatov, E. (2016). Progress with neurosensorimotor reflex integration for children with autism spectrum disorder. Journal of Neurology and Psychology 4(2), 14.
McPhee, J. (1993). Assembling California. New York, NY: Farrar, Straus and Giroux.
McPhillips, M., Hepper, P.G., & Mulhern, G. (2000). Effects of replicating primary-reflex movements on specific reading difficulties in children: A randomized, double-blind, controlled trial. The Lancet 355, 537-541.
McPhillips, M., & Sheehy, N. (2004). Prevalence of persistent primary reflexes and motor problems in children with reading difficulties. Dyslexia 10, 316-338.
Miller, L.J. (2006). Sensational kids: Hope and help for children with sensory processing disorder (SPD). New York, NY: Putnam.
Miller, L.J., Anzalone, M.E., Lane, S.J., Cermak, S.A., & Osten, E.T. (2007). Concept evolution in sensory integration: A proposed nosology for diagnosis. The American Journal of Occupational Therapy 61(2), 135-140.
Miller, L.J., Nielsen, D.M., Schoen, S.A., & Brett-Green, B.A. (2009). Perspectives on sensory processing disorder: A call for translational research. Frontiers in integrative neuroscience. Volume 3(22), 1-12.
Miller, L.J., Coll, J.R., & Schoen, S.A. (2007). A randomized controlled pilot study of the effectiveness of occupational therapy for children with sensory modulation disorder. The American Journal of Occupationoal Therapy 61, 228-238.
Schaaf, R.C., Dumont, R.L., Arbesman, M., & May-Benson, T.A. (2018). Efficacy of occupational therapy using Ayres Sensory Integration®: A systematic Review. The American Journal of Occupational Therapy 71(1), 1-10.
Schaaf, R.C., & Lane, A.E. (2015). Toward a best-practice protocol for assessment of sensory features in ASD. Journal of Autism and Development Disorders 45, 1380-1395.
Schoen, S.A., Miller, L.J., & Sullivan, J.C. (2014). Measurement in sensory modulation: The Sensory Processing Scale Assessment. The American Journal of Occupational Therapy 68(5), 522-530.
Smith, T., Mruzek, D.W., & Mozingo, D. (2015). Sensory integration therapy. In R.M. Foxx & J.A. Mulick (Eds). Controversial Therapies for Autism and Intellectual Disabilities (2nd Ed.) (pp.247-269). New York, NY: Routledge.
Taylor, M., Houghton, S., & Chapman, E. (2004). Primitive reflexes and attention-deficit/hyperactivity disorder: Developmental origins of classroom dysfunction. International Journal of Special Education 19(1), 23-37.
Walbam, K.M. (2013). The relevance of sensory processing disorder to social work practice: An interdisciplinary approach. Child & Adolescent Social Work Journal 31, 61-70.
Weeks, S., Boshoff, K., & Stewart, H. (2012). Systematic review of the effectiveness of the Wilbarger Protocol with children. Pediatric Health, Medicine and Therapeutics 3, 79-89.
Wisconsin Department of Health Services (2015, April 24). Treatment intervention advisory committee review and determination: Determination of Masgutova Method or Masgutova Neurosensorymotor Reflex Integration as a proven and effective treatment for individuals with autism spectrum disorder and/or other developmental disabilities. Author. Retrieved from https://www.dhs.wisconsin.gov/tiac/masgutovanri.pdf
Transcript
Children want to experience certain sensations and they initiate an activity to get those sensations. The brain is designed to give itself the experiences that are necessary for its own development and the therapist's job is to provide the right kind of activity so the child gets the right kind of experience and the right level of challenge so the child is able to try and succeed without getting too frustrated.
Jen Lumanlan:Hi, I'm Jen and I host the Your Parenting Mojo podcast. We all want our children to lead fulfilling lives but it can be so hard to keep up with the latest scientific research on child development and figure out whether and how to incorporate it into our own approach to parenting. Here at Your Parenting Mojo, I do the work for you by critically examining strategies and tools related to parenting and child development that are grounded in scientific research and principles of respectful parenting. If you'd like to be notified when new episodes are released and get a free guide to seven parenting myths that we can safely leave behind, seven fewer things to worry about, subscribe to the show at yourparentingmojo.com. You can also continue the conversation about the show with other listeners in the Your Parenting Mojo Facebook group. I do hope you'll join us.
Jen Lumanlan:Hello and welcome to the Your Parenting Mojo podcast. Today's episode on sensory processing disorder comes to you, courtesy of my friend Jess and I'm going to tell you a little bit about Jess and her daughter as a way to introduce the topic. Jess told me that her daughter likely had a mini stroke either in utero or during birth that affected the left side of her body and Jess figured this out around the time her daughter was 10 months old. So her daughter started physical therapy for that but Jess still felt as though something wasn't quite right and while her daughter already had a pediatrician, physical therapist and neurologist, it took six months or so of Jess being in her own words a crazy parent along with the support of her mother who happens to be a pediatric physical therapist to convince her daughter's support team that something still wasn't right. Finally her daughter was evaluated for sensory processing disorder. Her daughter received occupational therapy treatment and is now doing very well. Jess realized that if she hadn't been especially vocal, if she hadn't had her own mother's expert support, then it's possible her daughter's issues would have gone undiagnosed. Jess told me she started talking with anyone who will listen about this topic and whenever she mentions it, a light bulb goes off with whomever she's talking with about either a child in their life or a friend of a friend who's having similar issues and so she asked me to do an episode on it so more people could learn about it.
Jen Lumanlan:Now I have to say that as much as I love Jess, I did hesitate before taking this on. I don't usually deal with topics that result in medical diagnoses because I'm obviously not a doctor or a psychiatrist but the more I looked into this, the more I realized that helping parents understand the massive research on this topic is exactly the kind of thing that I usually do on this show and that an episode could probably be useful to a number of you. So to reiterate, I'm not a doctor or a psychiatrist and this episode is not intended to diagnose, treat, cure or prevent any disease. In fact, for reasons we'll get into in the episode, it's actually kind of difficult for a doctor to diagnose this as well. So we'll talk about diagnoses and the efficacy of treatment for SPD and finally how to chart a path forward if you suspect your child may have difficulties processing sensory information. So let's get into it. So for those of you who haven't heard of it before, what is sensory processing disorder and where did it come from? The research in this field was pioneered by Dr. A. Jean Ayers who was an occupational therapist active from the nineteen sixties to the nineteen eighties. Dr. Ayers' classic book is called Sensory Integration and the Child and it was re-released in two thousand five in a 25th anniversary edition. In the book, Dr. Ayers describes sensory integration which is the organization of our senses which give us information about the physical conditions of our body and the environment around us. She says that the brain has to organize all of these sensations if a person is to move and learn and behave in a productive way. For example, by making your eyes, nose, mouth, skin, muscles and joints all work together to peel and eat an orange and that an adaptive response to a sensory experience is a purposeful and goal-directed one. When we have an adaptive response, we master a challenge and learn something new.
Jen Lumanlan:Until the child is about seven, they're primarily a sensory processing machine. They sense things and respond without having many abstract thoughts and ideas. Dr. Ayers says that the brain's mental and social functions in the later years are based on this foundation of sensory motor processes and that if sensory motor processes are well organized in the first seven years, the child would have an easier time learning mental and social skills later on. Dr. Ayers died in nineteen eighty nine and Dr. Lucy Jane Miller has carried the flag on this work. Dr. Miller is the director of the Sensory Therapies and Research Center in Denver, Colorado and has written her own book called Sensational Kids Hope and Help for Children with Sensory Processing Disorder. In Dr. Miller's book, she shifts Dr. Ayers' original six syndromes of sensory integration dysfunction into three main pattern types with a number of subtypes and I'm Dr. Ayers' book describes SMD as having three main subtypes, although her own peer-reviewed research has only found support for two of these, sensory seeking and sensory under-responsivity. So in subtype one, sensory over-responsivity, so this is the one that doesn't have peer-reviewed support. People respond faster with more intensity or for a longer duration than people with typical sensory systems. Difficulties are often seen in new situations and during transitions and the responses may appear as willful behavior, seemingly logical and inconsistent. For example, a child with this subtype may not be able to tolerate being jostled as coats are being put on at preschool for the transition to outdoor play and may lash out at another child in response. Behavior may also result from cumulative stresses, so the jostle while putting on coats might just trigger the response that's been built up as a result of a whole morning of being jostled and touched through normal interactions. People with subtype two, sensory under-responsivity, disregard or just don't respond to sensory stimuli. A child may seem apathetic, lethargic and lacking in an inner drive to socialize and explore. They might not notice bumps, falls or cuts or extreme heat or cold and may be labeled lazy or unmotivated. As an infant, the child might have been considered a good baby or an easy child but when they become older they might not be able to maintain enough arousal to participate in family or school life. People with subtype three, sensory seeking slash craving, crave an unusual amount or type of sensory input possibly including spicy food, loud noises, visual stimulation and constant spinning which can lead to socially unacceptable or unsafe behavior and can be perceived as demanding or attention seeking. They may become explosive or aggressive when they're unable to meet their sensory needs, for example when they're asked to sit still and be quiet at school. This subtype can be confused with and even co-occur with attention deficit hyperactivity disorder or ADHD. People with pattern two, sensory discrimination disorder, have trouble interpreting qualities of sensory stimuli and how they're similar and different. This characteristic may be present in just one or more than one sense. STD in the tactile, vestibular and proprioceptive systems which tell you where your body is in the world results in awkward motor abilities.
Jen Lumanlan:STD in the visual or auditory systems can lead to learning or language disabilities. The final subtype is pattern three and there are two subtypes to this. So pattern three is sensory based motor disorder. In subtype one, pustural disorder, the person has difficulty stabilizing the body during movement or at rest. The child may have low muscle tone, inadequate control of muscles and movement and poor balance. In subtype two, dyspraxia, the person has difficulty conceiving of, planning, sequencing and executing actions. They may appear awkward and poorly coordinated in their gross motor skills like running and jumping, fine motor skills like drawing and painting or oral motor skills like chewing and swallowing. They seem unsure where their body is in space, have trouble with ball sports and any actions involving coordinated timing. Now where does SPD come from? Dr. Ayers herself acknowledged that we really don't know what causes SPD but she goes on to make quite a variety of speculations. She says, “many people think that the increase in environmental toxins such as air contaminants, destructive viruses and other chemicals that we take into our bodies may contribute to the dysfunction”, without offering a shred of supportive evidence from any of these many people that she cites. She hypothesizes that hereditary and chemical factors may be combined in some children and that genetic factors in certain children may allow environmental toxins to interfere with sensory integrative development. Some babies don't get enough oxygen at birth which may affect brain function and that children who lead very deprived lives like the children in the Romanian orphanages from the nineteen eighties who had very little human contact don't develop adequate sensory, motor or intellectual functions.
But lest you start blaming yourself for your child's problems, she goes on to say that most of the children with minor irregularities in brain function have had normal sensory experiences and the parents or guardians did a good enough job of raising them to allow for good brain development. So the parents did not deliberately or accidentally produce this dysfunction. While I was researching this episode, I got a question in the Your Parenting Mojo Facebook group about whether there's any evidence about how children's diets impacts their sensory processing and I have to say this view is very popular in the online community groups related to SPD but I'm afraid there's zero evidence whatsoever in the peer reviewed research or even in the books by Dr. Ayers and Dr. Miller that implicates children's diets in causing or worsening SPD. The only potential connection I could see is that a child may be unwilling to eat if they find the textures of some foods to be difficult to deal with but there's no evidence at all that SPD is caused by gluten intolerance or sugar or eggs or food coloring or any other kind of food. And a couple of other side notes to put in at this point. Firstly, I'm looking at doing an episode on Dr. Elaine Aron's work on highly sensitive people and in one of her papers, Dr. Aron actually expressly makes the distinction that being a highly sensitive person is different from sensory processing disorder.
In her book, The Highly Sensitive Child, Dr. Aron says that many parents have told her they found sensory integration to be helpful for their highly sensitive children but she doesn't think that being sensitive as she defines it is a problem to be treated, much less cured. Secondly, a couple of listeners have been in touch to talk about unintegrated reflexes and since the topic has a bit of an overlap with this one, I want to address that here too. All babies have reflexes. One of the more famous ones is the moro reflex which is when the infant spreads their arms and hands out and then pulls them in, usually while crying, when they feel like they're falling. In most infants this reflex goes away, which we call becoming integrated, by around four or five months of age but in some children this reflex doesn't become integrated and the child will still produce it when they feel like they're falling. There's quite a bit of evidence showing that unintegrated reflexes are correlated with a variety of developmental disabilities but I'm afraid that's pretty much where the evidence ends on this topic. It's a bit hard to get your head around because nobody seems to have done any meta-analysis to synthesize the results except the Wisconsin Department of Health Services randomly which briefly reports that this therapy remains, quote, an untested treatment as there are no studies that have tested its effectiveness. There is no evidence to suggest it is harmful, end quote. Also the main figure doing this research is Dr Svetlana Maskitova and she's the creator of the Maskitova Neurosensory Motor Integration Method registered trademark.
She's also done a good chunk of the research on the effectiveness of this eponymous method. Unfortunately methodological problems abound in the paper that she's done that's most relevant to us which is on the use of the neurosensory motor integration method in treating symptoms of autism spectrum disorder. In this study she treated 484 children with autism but the control groups were only 72 children with autism who weren't treated and 483 children with neurotypical development which seems kind of irrelevant. A more robust methodology would have compared the treated children with a much larger group of children who received comparable attention from a therapist and traditionally accepted treatment to compare the reflex integration treatment with traditional treatment rather than with no treatment. It's well known that just attention from a therapist can produce a therapeutic effect even when the treatment itself doesn't have any effect at all and the results produced changes in reflex patterns which were correlated with improvements in cognitive abilities but since there's no mention in the study of children being randomly assigned to treatment or control groups we can't say with any certainty that the treatment caused these improvements so there's that. And while we're on the topic of comorbidity which is two or more chronic diagnoses in the same individual some authors estimate that the majority of children with autism spectrum disorders have SPD although not all children with SPD have autism.
Okay so back to diagnosing SPD. SPD is actually very hard to diagnose and this topic brings me to the part of the episode where I'm not just going to recite what Dr. Miller and Dr. Ayers say but bring a bit of a more critical response. SPD is actually not included in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders which is abbreviated as DSM-5 which is the standard diagnostic guide for psychological diagnoses. Although I should acknowledge that what makes it into the DSM is as much a political issue as a diagnostic one. The first and second editions of the DSM included homosexuality as a mental disorder and it wasn't removed until nineteen seventy three. Dr. Ayers developed a sensory integration and praxis test which has been described as quote the most comprehensive and statistically sound means for assessing some important aspects of sensory integration most notably praxis and tactile discrimination end quote but apparently five of the 17 subtests are unstable which means the same child is likely to get different results each time they're tested.
Jen Lumanlan:Dr. Ayers reported that scores on the test were different for children with and without learning disabilities although subsequent analyses of her work showed there were actually no reliable differences between the scores of children with and without learning disabilities which is a pretty big problem when you're trying to diagnose this. The American Academy of Pediatrics published a paper in two thousand twelve stating quote it remains unclear whether children who present with findings described as sensory processing difficulties have an actual disorder of the sensory pathways of the brain and I will note as an aside here Dr. Ayers said they do or whether these deficits represent differences associated with other developmental and behavioral disorders specifically the behavioral differences seen in children with autism spectrum disorders, attention deficit hyperactivity disorder and developmental coordination disorders overlap symptoms described in children with sensory processing disorders. Studies to date have not demonstrated that sensory integration dysfunction exists as a separate disorder distinct from these other developmental disabilities. Furthermore, numerous challenges exist for evaluating the effectiveness of sensory integration therapy including the wide spectrum of symptom severity and presentation, lack of consistent outcome measures and family factors which make response to therapy variable end quote. The APA officially recommends that quote at this time pediatricians should not use sensory processing disorder as a diagnosis end quote. Dr. Miller's team published a paper in two thousand fourteen describing the development of a new scale to diagnose SPD but it focused only on some of the subtypes and the study was conducted on only 20 children and only 10 of those actually had a developmental disorder with the other 10 being typically developing children in a comparison group.
Dr. Miller does acknowledge that quote the standardization of reliable and valid scales to assess SPD is essential for the field to move forward end quote. So let's move on and talk about prevalence and treatment because that is after all how we got here in the first place after occupational therapy was successful for my friend Jess's daughter. The most widely cited study on the prevalence of SPD was conducted by Dr. Miller and her colleagues where the researchers sent surveys out to the parents of one suburban public school asking about whether their children exhibit symptoms of SPD. Only 39 percent of the parents responded and the researchers were conservative in assuming that none of the parents who didn't respond had children with those symptoms and based on this they came up with a prevalence rate of 5.3 percent. If you assume that the children of the non-responding parents had symptoms at the same rate as the responding parents then the prevalence rate goes up to 13.7 percent. Now there are a variety of problems with this way of estimating prevalence rates.
Firstly this is a suburban school in a district of mostly white middle-class parents who may be more likely to look for symptoms in their children and report these to a set of researchers. Secondly 39 percent of parents from one school is really a pretty low response rate to base this kind of determination on even if you are going to assess the results conservatively. Thirdly the researchers didn't make any attempt to study comorbidity which is the concept of having more than one affliction at once and as we already know SPD has a lot of symptoms in common with other potential diagnoses. Finally there's the predictable issues we see with so much other research on this show. We see a heavily caveated result in a paper that gets grasped by other researchers and reported as if it were a fact. For example a two thousand thirteen paper reports that quote mental health practitioners however may have limited information or understanding of SPD.
This is concerning as the disorder is estimated to occur in five percent of the general population equating to three million children in the United States end quote. Another set of researchers report that quote in fact on Miller Milberger McIntosh which is the people who did the original study on prevalence found that five to fifteen percent of children in the general population of kindergarten age children demonstrate difficulties with sensory modulation end quote. When in fact it would be irresponsible to generalize from those few white children in suburban Colorado to the entire general population of children. Further the researchers never actually met with any of the children to determine if they had SPD. They just asked parents most of whom probably knew nothing at all about SPD whether their children might have symptoms that could point to SPD or could point to a number of other disorders as well. I could ask the parents at my daughter's preschool class how often their children report having stomach aches and perhaps a hundred percent of them would report their children saying this every day but that doesn't mean the incidence of stomach cancer which has stomach pain as a symptom is a hundred percent in my daughter's classroom.
So as such this five to fifteen percent number that gets quoted in the literature with alarming frequency even by Dr. Miller herself who really should know better has little basis in fact. A subsequent study in two thousand eleven in New Haven Connecticut asked a reasonably representative sample of parents of children in the city whether their children were quote bothered by things like tags and clothing, cutting finger or toenails, hair brushing, mud, alarms, sirens or concerts. The researchers found that sixteen and a half percent of children were bothered by at least four tactile or auditory sensations although once again the researchers made no attempt to relate being bothered by sensations to an actual assessment for SPD. As we move on to treatment I'm afraid the picture gets even worse at least on the research front but let's hear from Dr. Ayers first on a description of what treatment for SPD looks like. She says that the central idea of sensory integration therapy is to provide and control sensory input especially the input from the vestibular system muscles and joints and skin in such a way that the child spontaneously forms the adaptive responses that integrate these sensations. Making this idea work with a child who has a sensory integrative disorder requires a therapist and a large room with a lot of simple and yet specialized equipment.
When the therapist is doing her job effectively and the child is organizing his nervous system it looks as if the child is just playing. Life is full of paradoxes she said and this is one of them. The general idea is that children want to experience certain sensations and they initiate an activity to get those sensations. The brain is designed to give itself the experiences that are necessary for its own development and the therapist's job is to provide the right kind of activity so the child gets the right kind of experience and the right level of challenge so the child is able to try and succeed without getting too frustrated. The therapy itself may appear, let's call it surprising. So the therapist might put the child in between two mats to make a hamburger and then the therapist presses down on the child pretending to put ketchup mustard and relish and all kinds of condiments on the hamburger to provide deep pressure sensations and apparently children often come out of this activity calmer and better organized than before. The therapist may offer activities that press the bones in a joint together or ask the child to hang from monkey bars or climb up a rock wall to stimulate the sensory receptors in the joints. The child may sit or stand on a motor-driven vibration board to send impulses to the vestibular system. They might play what's called net hockey which is where the child and the therapist lie each in an individual net suspended from the ceiling about 10 feet apart close enough to the floor to push themselves around with their hands and then they hit a soft ball around with plastic hockey sticks which generates a variety of vestibular input as the child figures out the placement of their body and watch the ball of the stick.
The child might play on what's called a helicopter where two children sit in separate seats and spin around and then might choose to use the play buoy which is a plastic buoy that can move freely along two ropes about 15 feet apart. Organizing sight to see the buoy coming and the arms to push it can be difficult for children with SPD but the idea is that their brain has been primed with the vestibular input from the hockey and helicopter games and the child will then be able to process the sensations and movements of the play buoy more effectively than they would have been able to otherwise. The child might play hide and seek which gives the child a feeling of mastery over both space and other people. Outside of the therapy sessions parents and teachers might ask the child to do what's called heavy work which consists of pulling pushing or carrying heavy things. Dr Ayers reports that a child using this kind of therapy might see improvements after just a couple of months because their child has a strong inner drive to seek the stimuli they need and is able to follow their own internal directions. The therapy apparently works especially well with young children whose brains are very plastic and changeable to develop new connections between neurons.
For older children it might make it easier to transmit messages between neurons. Dr Ayers acknowledges that some children may have problems that are so severe we don't have the knowledge needed to treat them or perhaps we can't determine the nature of the problem with enough clarity to design an effective program for that child and sometimes the problem is in a part of the brain that's less dependent on organizing sensations and these children may profit more from other kinds of therapy. Now unfortunately Dr Ayers's writing doesn't tell us much about the efficacy of these therapies probably mostly because she was pretty much writing the theory as she was figuring it out back in the 60s so there just wasn't any research on whether it was effective.
Jen Lumanlan:More research has been conducted in the intervening years but even though the 25th anniversary edition of Dr Ayers's book contains a contemporary expert commentary on each chapter, the commentary on the assessment and intervention chapter studiously avoids mentioning any peer reviewed research on the efficacy of this treatment and there is probably a good reason for this because there is little peer-reviewed evidence showing that it's effective. One of the popular treatments for SPD is known as the Wilbarger's protocol after the clinicians who developed it which includes what is known as a sensory diet of prescribed activities as well as brushing with what is essentially a scrubbing brush using deep pressure three times a day for six weeks by their parents at home. In one study on this topic even though the authors conducted a literature review and lamented the methodological constraints present in previous studies on this topic they went on to recruit just five participants themselves all of them male and one of the five children started refusing the brushing after two weeks but because the mother wanted to be included in the study the researchers went ahead and included her data anyway. The intervention was found to be effective but given the tiny sample size and the absence of any kind of control group the study has to be considered exploratory at best. A study using a convenient sample of 10 children mostly males focused on a therapeutic music listening program using music that had been processed using filters to create disruptions in the sound that apparently exercises the muscle in the middle ear. The children showed on average a statistically significant improvement in scores on a test of sensory processing as well as parent reports of child behavior although the small sample size is again concerning along with a wide variety of diagnosis of the children who were studied and the fact that musical therapy was combined with other sensory therapies all of this makes it difficult to draw strong conclusions.
Jen Lumanlan:Dr. Miller and some colleagues did a pilot study on the effectiveness of occupational therapy for children with sensory modulation disorder and achieved mixed results. They got statistically significant results on some criteria but not on others which may have been because of the tiny sample size of 24 children only eight of whom received treatment. Because this study was a pilot it was never intended to reach full scale to achieve definitive conclusions but it was published in two thousand seven and I was unable to find a subsequent study scaling the results.
The authors themselves note that quote one likely reason that many previous studies have found no significant changes from occupational therapy is that the outcome measures used were not sensitive enough to detect changes because previous literature does not present pilot testing of instrumentation researchers unknowingly replicate each other's work outcomes research in OTSI therefore is continually relegated to pilot research rather than research that moves forward and has the potential to change practice end quote and these impacts are compounded when you start looking at meta-analyses of endless pilot research projects all with tiny sample sizes and results with low statistical power. So moving on to those meta-analyses a two thousand fourteen meta-analysis of 27 studies over a 37 year period found a great deal of variability in the research with potential positive outcomes in sensory motor skills and motor planning, socialization, attention, behavioral regulation, reading related skills, participation in active play and achievement of individualized goals but these were severely hampered by small sample sizes, variable doses of treatment, failing to deliver the treatment as planned and the selection of outcomes that may not be meaningful to clients and families like IQ tests or the involuntary movements the eyes make after you spin around which may be clinically interesting but doesn't make much difference in the child's or family's life or may not change with the amount of treatment provided because SPD has so many subtypes it can help us to understand the impact of treatment better if the treatment is provided to only research participants who have that particular subtype so you can weed out the problems of interactions with other subtypes but that's very difficult to do in practice and leads to a lot of variability in the response to treatment. Virtually all of the studies had very low statistical power meaning that if a control group receiving attention from a therapist but no actual treatment was used which wasn't always the case then there usually wasn't a large difference between the group receiving treatment and the group seeing a therapist but doing some unrelated activity after the treatment period.
It's possible that a positive effect could have been found if the researchers would look at more children in each study. 12 of the studies did analysis on less than 20 participants. The largest one had 78 participants and the smallest one had just five. I find it very frustrating that we continue to see research in this field but in other fields too hampered by this issue. It seems like such an easy thing to fix. Yes it costs more to have more participants but you think the benefits of not having to do the same research over and over again would outweigh the costs. The typical way of doing a meta-analysis in this field seems to be to do a really wide search of more than 11,000 article abstracts and then screen the results for quality and conduct the final analysis on the approximately eight studies that meet the researcher's inclusion criteria. One study that used this methodology looked at treatments like qigong massage, weighted vests, slow swinging and incorporation of multi-sensory activities into preschool routines. Strong evidence was actually found to support qigong massage although this was for children with autism spectrum disorder rather than SBD specifically.
Limited evidence supported weighted vests in one randomized control study of 30 children and there was insufficient evidence to draw conclusions on the swinging and multi-sensory activities due to the poor methodology in the original studies. One meta-analysis on just the effectiveness of the Wilbarger protocol started with 300 studies but ended up analyzing only four and found that the sample sizes in these studies ranged from one to four participants with no justification provided in any study for the size of the sample. All used convenience sampling to recruit from local occupational therapy clinics, all participants were boys and in the one study where the single participant was compared with a single control the participants were randomly allocated to treatment and control conditions but the person giving the treatment knew which boy was in which condition which could have impacted the results.
All researchers trained parents to do the brushing at home but didn't ask whether the mother had adhered to the prescribed schedule of brushing or not. The meta-analysis concluded there isn't enough evidence to support or refute the use of the Wilbarger protocol with children or to be able to generalize the results of these studies to other populations. Another meta-analysis doesn't tell us how many articles the researchers initially screened but says they ended up with 50 articles emphasizing results from work accomplished in the last 15 years but quote some older papers were included because they are considered key in the field of neuroplasticity end quote. In other words the researchers cherry-picked some older studies that would support their conclusions. The vast majority of the high quality studies were conducted on animals usually rodents with many of the lower quality studies with weaker designs also using animals but some were done with humans, almost always adults rather than children. Despite the problems with extrapolating from animal studies to outcomes that are actually significant for patients and families the researchers concluded that their review provides direct and robust support for neuroplasticity in many brain regions in response to environmental conditions or direct sensory input end quote.
A pretty new meta-analysis published at the beginning of two thousand eighteen identified 11,619 potential citations and abstracts to study before you get excited they then whittled this number down until five studies remained one of which was conducted by one of the authors of the meta-analysis. The usual tiny sample sizes confounding with other conditions as all children in all of the studies also had autism problems in understanding whether the treatment protocol was actually adhered to and mixed results were somehow lost in the finding that quote the evidence is strong that sensory integration therapy demonstrates positive outcomes for improving individually generated goals of functioning and participation as measured by goal attainment scaling for children with autism end quote. One of the meta-analysis authors Dr Roseanne Schaff has written elsewhere about goal attainment scaling as a way to measure outcomes it consists of the therapist and patient working together to define minimal intermediate and desired outcomes of therapy at the beginning of treatment that progress can then be measured against.
I can see the relevance of this in the individual's treatment plan and that's certainly a step above the therapist asking the parent whether the parent thinks the child is better which is the way results are gathered in some studies on this topic but it does seem to be problematic when you're attempting to generalize results to a much larger population that the efficacy of treatment is essentially decided by the therapist and parent rather than assessed using any standardized measure. So moving beyond the meta-analysis I want to tell you about a chapter I read on sensory integration therapy in a book called Controversial Therapies for Autism and Intellectual Disabilities. These researchers clearly have an anti-sensory integration therapy agenda but their position is extremely well referenced using high quality sources.
They start out by noting that quote a major limitation in sensory integration theory is the dearth of reliable evidence for its main tenet which is the integration of sensory input is necessary for high-level cognitive functioning end quote. In fact in Dr Lucy Miller's book the source she cites on this topic is a researcher named Hebb who she says published a relevant paper in nineteen ninety-five but when I went to find it I realized it was actually a paper published in nineteen fifty-five that described Hebb's untested hypothesis that quote there will be an optimal level of arousal for effective behavior but it turns out that there is no scientific basis for this idea. Some neuroscientists who review Dr Ayer's work stated that quote in her classic work Sensory Integration of the Child, Jean Ayers concludes that symptoms reflected in sensory integration disorder are the end products of inefficient and irregular sensory processing in the brain.
She does not however address the significance of specific brain behavior relationships including the possible interactive roles of the neocortex, the basal ganglia and cerebellum. Instead the theory of SID is based on a pyramid of sensory cognitive and behavioral systems that places tactile vestibular and proprioceptive systems at the base above which are the distal senses of vision and audition while the complex sensorimotor cognitive and behavioral systems are found at the highest levels. While this model might make intuitive sense the brain behavior relationships inherent in this view of the brain's organization have not been established.
Accordingly while the symptoms that comprise this criteria for sensory integration disorder, sensory processing disorder, sensory modulation disorder are common and real the conditions lack clear operational definitions and they are poorly understood from an anatomic point of view end quote. These neuroscientists conclude that the symptoms of SPD can probably be classified within a neuroscientific knowledge base if neuroscientists collaborate with occupational therapists to better understand the relationships between brain and behavior but I can't find any indication that this work is underway. There's certainly no mention of it on Dr Miller's Sensory Therapies and Research Center's website. The skeptical book chapter that cites that neuroscience paper goes on to wonder why given the dearth of evidence about the efficacy of sensory integration therapy practitioners continue to recommend it and parents continue to seek it out. The authors argue that three factors contribute to continued belief in its therapeutic value. First practitioners promise vague benefits that are difficult to test.
Second they contend these benefits occur because the treatment corrects a central underlying deficit and third the research may give providers and families the impression that the therapy quote can't hurt and may be worth a try even if benefits are unlikely to occur. The authors cite comments from Dr Ayers's book to back up each of these assertions and state that the main reasons not to use this therapy are that it may distract families from focus on educational and therapeutic practices that could actually be helpful. If it is helpful the lack of quality in the research base doesn't allow us to know whether it's helpful because of the specific treatment or because of the attention the child gets from the therapist or because they enjoy skipping school to go to therapy.
If some aspect of the treatment has produced benefits for the child then individual parents may not care why that is but it would be a whole lot faster and cheaper to implement an intervention that involves playing with your child one-on-one for an hour rather than diagnosing a disorder and implementing therapy if it turned out that the attention was the driver of the improvement. For these reasons the insurance company Aetna maintains a web page of information related to sensory integration therapy that describes the therapy as experimental and investigational with unproven effectiveness which I assume means it isn't covered by insurance. I've heard that some insurance companies do cover it and some school districts actually apparently provide this treatment as well. So as you can imagine all of this leaves me in a rather uncomfortable position having been asked by my friend to do this episode on a therapy that has apparently helped her daughter but concluding from the research that it's not clear how or why or even if it was the therapy itself that helped. Now this conclusion here might seem like a bit of a digression but it actually won't end up being one. As I was in the middle of writing this episode our family went on a camping trip to see the spring wildflowers in southern California and since I only had writing to do rather than reading I grabbed a book from my shelf to take on the trip for evening reading.
Jen Lumanlan:Now believe it or not I actually don't get a lot of time these days to read anything that isn't related to child development but John McPhee's book Assembling California caught my eye and so that's what I took with me. Now as a side side note here those of you who already love John McPhee are thinking of course Jen loves John McPhee too and if you love John McPhee and you haven't read the love letter about him that Sam Anderson wrote in the New York Times magazine a couple of years ago then you really must go and find that in the references right now. Those of you who haven't heard of McPhee should browse his titles and find something that seems even vaguely interesting to you and watch as his amazing writing draws you in to learn about orange farming or life as a merchant marine or the geology of California.
The book that I picked out Assembling California is told through a series of interactions with the geologist Dr Kenneth Deffies I hope I'm saying that right of the University of California Davis who went to grad school in the ninteen fifties before the theory of plate tectonics had been fully explained. So McPhee asked Deffies in the book what Deffies had been taught about how mountains were formed. Deffies had learned a couple of different theories that either the earth's skin contracted by shriveling up like the skin of an apple and the wrinkles become mountains or that there were deep troughs in the ocean called geosynclines that filled up with sediments and after enough sediment had collected and it became rock it would rebound like a huge log coming up from underwater. It turned out that there was a lot of truth in geosyncline theory. You could use this knowledge to find gold, silver, antimony, oil and there are rocks in the mountains that were formed under the oceans but it wasn't until plate tectonics came along that it all started to make sense and we realized what parts of the previous theories we should keep and which we should discard. And so as I'm reading that chapter from this book that I randomly picked up I realized that it held a parallel with the research on SPD.
Even the skeptics agree that some children have problems processing information from their senses. The problems arise in our attempts to understand why these occur and separate them well enough that we can see how potential treatments impact them. Going back to Deffies again the earth's plates were moving around all along whether or not we knew how to describe it and we may find that children have had sensory processing difficulties all along even though we can't fully describe it yet. Or it's possible that once we understand the underlying neurological mechanisms better that SPD will get subsumed under autism spectrum disorders and other diagnoses that come with sensory processing difficulties just as we know geosynclines do exist even though they don't explain the entirety of how mountains are formed. Unfortunately given that the research to actually help us understand SPD is moving slower than plate tectonics this may not be of much practical help to you today if you suspect that your child may have sensory processing difficulties. If you do suspect this then Dr Miller's book Sensational Kids is probably the most helpful in terms of describing a series of children moving through their days that's likely to make you say oh my child totally does that which can help you to talk with your child's pediatrician about a potential course of action. Dr Ayers' book is helpful too but from a less case study based and more descriptive approach. Since many pediatricians likely haven't heard of SPD you may find it to be an uphill struggle to convince them that there's anything wrong with your child just like my friend just did. If you're able to see an occupational therapist who it can determine that your child does exhibit symptoms associated with SPD then given the state of the research on the effectiveness of treatment I think you would be safely within your bounds to decline it if you felt the therapist was not convincing in describing the potential benefits to you.
Jen Lumanlan:If you did decide to proceed then you should work with a therapist to define goals for your child's behavior for example the number of times the child will get up out of their seat during story time at preschool. You might decide to ask your child's teachers to count the number of times your child gets up during story time every day for a week and then proceed with treatment for a period of time and count the number of times the child gets up again. The child getting up is just an example the actual variable you'll measure will depend on the child's particular challenges. You should set an agreement with the therapist by when you should expect to see progress and don't be afraid to stop the treatment then if you aren't seeing adequate progress. It's unfortunate that the state of the research forces parents to develop their own scientific study to see if the treatment is working but hopefully this will change in the future. I have to confess that it does make me a little squeamish to reduce the human experience to express behavior but in this case it seems as though changes in behavioral expression is really the only way that we can know whether or not any underlying mechanisms are being affected.
So that's where we are with the research on SPD. To summarize, I and many experts believe that some children have problems processing sensory inputs. Whether this is a specific diagnosable condition or whether it's a symptom of other diagnosable conditions remains to be seen. Given the dearth of evidence for the efficacy of treatment it would not be irresponsible of you to decline treatment if the therapist is unable to convincingly articulate its benefits but if you do proceed with treatment you may want to approach it like a scientific study and set goals against which progress will be measured and these goals should be ones that are meaningful for your child's and family's experience rather than being ones that are clinically interesting but otherwise irrelevant to you and your child. I hope this helps those of you with children who struggle with processing sensory input to determine a path forward that's right for your child and your family. References for today's episode can be found at yourparentingmojo.com/SPD. Thanks for joining us for this episode of Your Parenting Mojo. Don't forget to subscribe to the show at yourparentingmojo.com to receive new episode notifications and the free guide to seven parenting myths that we can leave behind and join the Your Parenting Mojo Facebook group for more respectful research-based ideas to help kids thrive and make parenting easier for you. I'll see you next time on Your Parenting Mojo.