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Lucy Jane Miller responds to AAP's publication

Letter to the Editor Re: Sensory Integration Therapies for Children with Developmental and Behavioral Disorders

• Lucy Jane Miller, PhD, Executive Director

Sensory Processing Disorder Foundation and STAR Center

I am responding to your article of May 28, 2012 on behalf of the SPD Foundation and our constituents, primarily parents of children with Sensory Processing Disorder and physicians, therapists, educators and other professionals who are trying to help children with sensory challenges and their families. Our website, www.SPDFoundation.net, receives an average of 85,000 hits each day from individuals seeking information about this disorder, which shows how much information about the disorder is sought and needed.

First, let me applaud the Journal for conveying issues related to this controversial area with such even-handed scientific rigor. Many aspects of this article are accurate and we agree with much of what is conveyed wholeheartedly. For example, the conclusion that occupational therapy may be acceptable as a component of a comprehensive treatment plan is accurate. Another excellent statement provided in the article is that pediatricians should inform potential users of research related to any type of intervention they intend to use.

However, since 1995, the Wallace Research Foundation (WRF) has had an initiative to study Sensory Processing Disorder. To ensure rigor in the design of funded projects, many Principal Investigators with extensive NIH -funded research backgrounds are funded by the WRF projects. The researchers have formed a consortium, the SPD Scientific Work Group, with 49 members so far, representing renowned institutions such as Harvard, Yale, Duke, MIT, U of WI-Madison, UC San Francisco and many others. Notably, none of the dozens of peer-reviewed articles published by the Scientific Work Group are sited in the AAP Section article in Pediatrics. For example, the AAP committee neglected to mention the rigorous preliminary randomized controlled trial (RCT) (Miller et al., 2007), or publications related to: the prevalence of the disorder (Ben-Sasson, 2009, et al.), the validity of the diagnosis (Davies, et al., 2007), and/or the underlying neurological foundations suggested by the empirical data (McIntosh, et al., 1999; Schoen, Miller et al., 2009; Brett-Green, Miller et al., 2008, 2010). The 2007 RCT demonstrated the effectiveness of OT with children who have SPD, in achieving individualized parent priorities as well as other key outcomes compared to both a passive and an active placebo.

The following comments address the AAP Committee's three primary recommendations:

First, is SPD a diagnosis? According to the rule-based definition that a diagnosis is considered valid because it is in the DSM or the ICD, then it is true that SPD is not yet a "real" diagnosis. However, the research evidence includes multiple studies suggesting that SPD, while frequently comorbid with other disorders such as Autism Spectrum Disorder and ADHD, does exist as a separate stand-alone condition. Carter, Briggs- Gowan, and Ben-Sasson (Yale University, U MA-Boston, U Conn) studied all babies born from July 1995 to September 1997 in the New Haven greater metropolitan area. These children were followed from birth to age 8 years and tested several times during the longitudinal, epidemiologic, NIH- funded study. At age 8, with children diagnosed with ASD, genetic disorders, or developmental delays excluded from the research, 75% of the children with SPD symptomology were found to have no co-morbid diagnosis (Carter et al., 2011). In another rigorous NIH-funded epidemiologic study, Goldsmith and colleagues (Van Hulle, et al., 2012) at the University of WI -Madison followed 970 children. They administered the Diagnostic Interview Schedule for Children and excluded children with autism and pervasive developmental disorders from a study which reported that ~ 58% of the children with significant SPD symptoms had no other diagnoses. Thus evidence is building, regardless of the acceptance of SPD in diagnostic manuals, that SPD is a valid diagnosis, and exists in children who do not have other mental health or physical conditions. Regardless, we agree with the AAP committee's conclusion that caution is warranted in labeling the disorder; treating the symptoms (whatever the condition is labeled) is much more important than the diagnostic category into which the label falls.

The second conclusion is that the "limited data on the use of sensory -based therapies should be communicated." Certainly the limitations on effectiveness data related to the many interventions used in pediatrics should be communicated. An informed clinician should have up-to-date references on many if not all therapies used to increase functioning in pediatric clients. In the case of occupational therapy for children with SPD, references should include: Miller et al, (2007), the RCT noted above, that demonstrated the effectiveness of OT in treating 1) parent priorities for treatment outcomes measured with Goal Attainment Scaling (Kiresuk et al., 1994) and cognitive/social issues measured with the Leiter International Performance Scale - Revised (Roid & Miller, 1997) and 2) the RCT administered by Pfeiffer, Kinnealey et al. (2011) that demonstrated the superiority of sensory-based OT to compared to fine motor -based OT and found that the former achieved individualized outcomes e.g., social emotional growth ,and self-regulation whereas the latter resulted in changes related only to fine motor skills. Other articles about the effectiveness of OT with pediatric disorders include: Case-Smith & Arbesman (2008) and May-Benson & Koomar (2010) and more.

We agree also with the third recommendation: families should be taught to determine whether interventions are effective. This key concept applies to all interventions and all service providers. In addition to evaluating interventions such as OT, parents should be taught to evaluate the effect of medications, nutritional supplements, dietary changes, and other interventions. At the STAR Center in Denver, CO, we assist parents in using either visual analog scales or Goal Attainment scaling to evaluate the services they receive. (See Kiresuk et al., 1994 and/or Dexter et al., 1999; van Laerhoven, H. et al., 2004; Paul-Dauphin, et al., 1999 for more information on these techniques.)

Finally, a few comments related to the body of the Pediatrics article follow. The article alludes to, but is non-specific about, the explosion of animal and human research that explores how sensory information is processed and integrated. Sensory integration in this context refers not to the behavioral pattern that OTs and others refer to as "SI" dysfunction. Instead it applies to sensory information that comes into the nervous system as unisensory (e.g., tactile only or auditory only) and synapses on a multisensory neuron or set of neurons, producing a different response than the domain specific (e.g. unisensory) input. An excellent current reference on MSI in animals and humans is the New Handbook of Multisensory Processing (Stein, B. Ed., released in June 2012, with 43 chapters related to MSI including MSI in SPD [Miller et al, 2012]).

In addition to MSI research, studies exist demonstrating differences between SPD and normal controls on other psychophysiologic functions including: arousal using electrodermal activity (McIntosh et al, 1999), vagal tone (Schaaf, 2003), and sensory gating (Davies, 2007). In addition, evidence related to the neurophysiologic mechanisms of sensory processing includes PET scans and environmental trauma studies with non-human primates that demonstrate sensory processing impairments (Schneider et al., 2007 and 2008), rat studies of PPI in animals with poor vs. good sensory gating (Levin et al., 2005 and 2007), and cat studies of MSI (e.g., Stanford, Quessy, Stein; 2005; Perrault, Rowland, Stein, 2012).

A final note regarding the treatment, occupational therapy with a sensory integration framework, is worth mentioning. The AAP committee is quite right in noting that most OTs who use sensory-based therapies do not base their intervention strictly on Ayres' protocols principles (cf. Ayres, 1972). Since the focus of current-day treatment increasingly is social participation, self-regulation, self-esteem/confidence and participation in everyday activities or occupations (Cohn, Miller et al., 2000), the therapeutic model that most advanced clinicians use and teach is enriched from Ayres original teachings. Though in some locations, treatment for SPD is limited to specific protocols, such as so-called "brushing," "spinning," wearing weighted vests, etc., and not tailored to the individual nor based on clinical reasoning, in many locations therapy is provided by advanced clinicians, who have been trained and participated in a mentored training on intervention for SPD.

Thus, best practice OT intervention includes principles from the model originally developed by Ayres (1972) but with striking expansions such as:

1) offering 'intensives' (therapy 3 to 5 days a week) over a short- term, 2) developing specific family-generated functional goals; 3) concentrating on parent education and coaching; and 4) focusing on enriched relationships and engagement, arousal regulation and social participation with the essence being 'joie du vivre,' improving the quality life for children and families.

Certainly, we agree with the AAP authors that "numerous challenges exist for evaluating the effectiveness of SI therapy, including the wide spectrum of symptom severity and presentation, lack of consistent outcome measures, and family factors." (Pediatrics p. 1187). In fact, we have offered additional issues for researchers to consider (Miller et al., 2007b) prior to initiating outcome studies such as:

1) The need for a manualized treatment protocol tied specifically to a fidelity to treatment measure; 2) The need and means to identify a homogeneous sample; 3) The need for consistent outcome measures that are sensitive and measure meaningful changes; 4) And, of course, methodological rigor which is sometimes hard to attain in real world, non-laboratory settings.

The cautions stated in the AAP article about the validity of outcome data relates to all pediatric interventions. We agree with the AAP committee that interventions must be examined in relation to the effectiveness of the treatment for the particular type of disorder a specific individual is exhibiting.

And finally, let us all keep in mind the teachings of Ayres, who consolidated sensory-based therapies into a field she called Sensory Integration; this quote aptly displays Ayres' scientific mind and evaluative spirit.

"Truth, like infinity, is to be forever approached, but never reached" (Ayres, 1972, p iv).

Those using Ayres' assessment and treatment approach should be mindful of her wisdom and humility.

Lucy Jane Miller, May 31, 2012 Executive Director, STAR (Sensory Therapies And Treatment) Center and Sensory Processing Disorder Foundation

The Official Journal of the American Academy of Pediatrics makes a statement about Sensory Processing Disorder

Although this is not the way that Occupational Therapists world wide would like to spread the word about Sensory Processing Disorder, it is a small step depicting that although little is known in the medical world, SPD is on the radar and beginning to make an impact on the medical community.  Now is the time for OTs, PTs, SLPs, teachers, parents, caregivers and friends to show the medical community how real Sensory Processing Disorder really is and how sensory integrative therapies can help!!!!

This is the article printed in the May 2012 issue of PEDIATRICS.  The official journal of the AAP-

Sensory Integration Therapies for Children With Developmental and Behavioral 

  

  

http://pediatrics.aappublications.org/content/early/2012/05/23/peds.2012-0876 

located on the World Wide Web at: 

The online version of this article, along with updated information and services, is 

Sensory Integration Therapies for Children With 

Developmental and Behavioral Disorders 

abstract 

Sensory-based therapies are increasingly used by occupational thera- 

pists and sometimes by other types of therapists in treatment of children 

with developmental and behavioral disorders. Sensory-based therapies 

involve activities that are believed to organize the sensory system 

by providing vestibular, proprioceptive, auditory, and tactile inputs. 

Brushes, swings, balls, and other specially designed therapeutic or rec- 

reational equipment are used to provide these inputs. However, it is un- 

clear whether children who present with sensory-based problems have 

an actual “disorder” of the sensory pathways of the brain or whether 

these deficits are characteristics associated with other developmental 

and behavioral disorders. Because there is no universally accepted 

framework for diagnosis, sensory processing disorder generally should 

not be diagnosed. Other developmental and behavioral disorders must 

always be considered, and a thorough evaluation should be completed. 

Difficulty tolerating or processing sensory information is a characteristic 

that may be seen in many developmental behavioral disorders, includ- 

ing autism spectrum disorders, attention-deficit/hyperactivity disorder, 

developmental coordination disorders, and childhood anxiety disorders. 

Occupational therapy with the use of sensory-based therapies may be 

acceptable as one of the components of a comprehensive treatment plan. 

However, parents should be informed that the amount of research regard- 

ing the effectiveness of sensory integration therapy is limited and incon- 

clusive. Important roles for pediatricians and other clinicians may include 

discussing these limitations with parents, talking with families about a tri- 

al period of sensory integration therapy, and teaching families how to 

evaluate the effectiveness of a therapy. Pediatrics 2012;129:1186–1189 

BACKGROUND: DEVELOPMENT OF THE SENSORY SYSTEM 

Sensory integration is a framework first described by occupational 

therapist A. Jean Ayres, PhD, in the 1970s. It refers to the body ’s way 

of handling and processing sensory inputs from the environment.1 

Ayres felt that the sensory system develops over time, much like 

other aspects of development (language, motor, etc), and that deficits 

can occur in the process of developing a well-organized sensory sys- 

tem. A well-organized sensory system can integrate input from multiple 

sources (visual, auditory, proprioceptive, or vestibular). Ayres postu- 

lated that sensory integration dysfunction occurs when sensory neu- 

rons are not signaling or functioning efficiently, leading to deficits 

in development, learning, and/or emotional regulation. 

SECTION ON COMPLEMENTARY AND INTEGRATIVE MEDICINE 

and COUNCIL ON CHILDREN WITH DISABILITIES 

KEY WORDS 

sensory integration, sensory processing, sensory integration 

therapy 

This document is copyrighted and is property of the American 

Academy of Pediatrics and its Board of Directors. All authors 

have filed conflict of interest statements with the American 

Academy of Pediatrics. Any conflicts have been resolved through 

a process approved by the Board of Directors. The American 

Academy of Pediatrics has neither solicited nor accepted any 

commercial involvement in the development of the content of 

this publication. 

All policy statements from the American Academy of Pediatrics 

automatically expire 5 years after publication unless reaffirmed, 

revised, or retired at or before that time. 

www.pediatrics.org/cgi/doi/10.1542/peds.2012-0876 

doi:10.1542/peds.2012-0876 

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). 

Copyright © 2012 by the American Academy of Pediatrics 

1186 FROM THE AMERICAN ACADEMY OF PEDIATRICS 

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Health Care System and/or Improve the Health of all Children 

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The ability of the brain to process 

sensory information from the environ- 

ment has been an expanding area of 

basic neuroscience research. Hubel and 

Wiesel were among the first to docu- 

ment the important effects of early 

experience (eg, deprivation) on the way 

visual sensory input is processed in the 

brain.2–5 Animal and human research is 

beginning to explore how other senses 

are processed and integrated6–10 and 

how those processes are disrupted 

in specific syndromes (eg, autism,11,12 

schizophrenia13,14) and by specific ex- 

periences (eg, institutionalization, inter- 

national adoption15,16). 

STATEMENT OF THE PROBLEM 

Since Ayres1 descri bed sensory i n- 

t egrat i on dy s f unc t i on i n t he 19 7 0s , 

s ens or y - bas e d t herapi es hav e be en 

used increasingly, mainly by occupa- 

tional therapists (but sometimes other 

health professionals) to treat a range of 

symptoms seen in children presenting 

from across a variety of settings, in- 

cluding the home, community organ- 

izations, clinics, and schools. Sensory 

integration, sensory “diets,” and other 

sensory-based therapies typically are 

based on cl assi c sensory i ntegra- 

ti on theory but of ten do not use al l 

of the ori gi nal l y descri bed sensory 

integration protocols. Sensory-based 

therapies involve activities that are 

believed to organize the sensory sys- 

tem, by providing vestibular, proprio- 

ceptive, auditory, and tactile inputs, by 

using brushes, swings, balls, and other 

specially designed equipment to pro- 

vide these inputs. Occupational thera- 

pists and other health professionals 

may also use a sensory processing ap- 

proach when identifying and modifying 

barriers that limit the individual’s ability 

to par ti ci pate in everyday acti vi ti es 

or occupati ons. 

Proponent s of sensory i nt egrat i on 

t heory bel i eve t hat i nappropri at e 

or defici ent sensory processi ng i s 

a developmental disorder amenable 

to therapy and that treatment can 

improve developmental outcomes. 17 

A definition of sensory processing 

disorder has been proposed but has 

not been universally accepted.18 Stand- 

ardized measures, such as the Sen- 

sory Profile,19 have been developed to 

classify a child’s sensory deficits. The 

Sensory Profile provides a standard 

method for professionals to measure 

a child’s sensory processing abilities 

and to provide a profile of the effect 

of sensory processing on functional 

performance in the daily life of a child.20 

Such standardized measures are com- 

monly used by occupational therapists 

to quantify how much these devel- 

opmental and behavioral differences 

affect the child’s functional performance 

of t he dai l y act i v i t i es of chi l dhood. 

The possible diagnosis of sensory pro- 

cessing disorders remains a challenging 

clinical issue. In the sensory processing 

disorder classification system proposed 

by Miller et al,18 sensory processing 

disorders are subdivided into 3 specific 

patterns: sensory modulation disorder, 

sensory discrimination disorder, and 

sensory-based motor disability. These 

patterns are then categorized into sub- 

types. Sensory modulation disorder is 

subdivided into overresponsive, under- 

responsive, and sensory seeking/craving 

subtypes. Sensory discrimination dis- 

order has no subtypes. Sensory-based 

motor disability is subdivided into pos- 

tural disorder and dyspraxia. 

Sensory processing disorder or a 

similar diagnosis has been included in 

Zero to Three’s Diagnostic Classifica- 

tion of Mental Health and Develop- 

mental Disorders of Infancy and Early 

Childhood Revised21 and the Diag- 

nostic Manual for I nfancy and Early 

Chi l dho o d o f t he I nt e rdi s c i pl i nar y 

Council on Developmental and Learning 

Disorders,22 where “regulatory-sensory 

processing disorder ” in infants has 

also been classified as a developmental 

di f f erence f or t hi s group. For ol der 

children and adolescents, no com- 

monly accepted definition of sensory 

processi ng di sorder exi st s. Some 

experts have proposed that the defi- 

nition of autism spectrum disorders 

in the forthcoming Diagnostic and 

Statistical Manual of Mental Dis- 

orders, Fifth Edition be expanded to 

include definitions of associated sen- 

sory issues, such as under- and over- 

responsiveness; however, the committee 

that is preparing the textbook has re- 

quested that more studies be per- 

formed before sensory processing 

disorder can be officially recognized.23 

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 or whether these 

deficits represent di ff erences asso- 

ciated with other developmental and 

behavioral disorders. Specifically, the 

behavioral differences seen in chil- 

dren with autism spectrum disorders,24 

attention-deficit/hyperactivity disorder,25 

and developmental coordination dis- 

orders26 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. Fur thermore, numerous 

chal l enges exi st for eval uati ng 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 re- 

sponse to therapy variable.27–29 

Despite the challenges of defining and 

studying the effectiveness of sensory 

integration therapy, it is possible that 

the treatment of sensory processing 

difficulties is helpful to children who 

have problems identified in sensory 

processing measures. Some published 

case series and observational studies 

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have reported positive outcomes of 

sensory integration therapy for chil- 

dren with sensory processing dis- 

orders.27,29 Older meta-analyses30,31 and 

at least 2 more recent reviews32, 33 

have been published that suggested a 

positive trend in meeting occupational 

goals with the use of sensory integra- 

tion therapy. However, the authors of 

the 1999 meta-analysis cautioned 

that most studies in the field were 

of insufficient scientific rigor to be 

included in a meta-analysis, studies 

varied in the use of outcome meas- 

ures, and the ability to draw con- 

clusions and detect a treatment effect 

was limited.31 Many of the more recent 

studies, unfortunately, share some of 

these traits. 

One recent small study cautions health 

care practitioners about the possible 

negative behavioral effects of sensory 

integration therapy in certain pop- 

ulations. Devlin et al34 reported on the 

comparative effects of sensory inte- 

gration therapy and behavioral inter- 

ventions on rates of challenging or 

self-injurious behavior in 4 children 

in whom autism spectrum disorder 

was diagnosed. A functional assess- 

ment was conducted to identify the 

variables maintaining the challenging 

behaviors. The sensory integration 

therapy was designed by an occupa- 

tional therapist who was trained in 

sensory integration therapy. The sen- 

sory integration therapy and a behav- 

ioral intervention were compared 

within an alternating treatments de- 

sign. Results from this study clearly 

demonstrated that the behavioral inter- 

vention was more effective in reducing 

challenging behavior and self-injurious 

behavi or t han was t he sensory in- 

tegration therapy. Finally, in t he best 

treatment phase, onl y t he behavioral 

i nterventi on was i mpl emented, and 

further reduction was observed in the 

frequency of challenging behavior and 

self-injurious behavior. 

RECOMMENDATIONS 

1. At this time, pediatricians should not 

use sensory processing disorder as 

a di agnosi s. When t hese sensory 

symptoms are present, other devel- 

opmental di sorders—speci fical l y, 

autism spectrum disorders, attention- 

deficit/hyperactivity disorder, deve- 

lopmental coordination disorder, 

and anxi ety di sorder—must be 

considered and thoroughly evaluated, 

usually by appropriate referral(s) 

to a developmental and behavioral 

pediatrician, child psychiatrist, or 

child psychologist. The American 

Academy of Pediatrics clinical re- 

port on the management of children 

with autism spectrum disorders is 

a useful resource to help with these 

referrals.35 

2. Pediatricians should recognize and 

communi cat e wi t h f ami l i es about 

t he l i mi t e d dat a on t he us e of 

sensory-based therapies for child- 

hood developmental and behav- 

ioral problems. 

3. If the pediatrician is managing a 

chi l d whose therapi st i s usi ng 

sensory-based therapies, the pedia- 

trician can play an important role in 

teaching families how to determine 

whether a therapy is effective. 

a. Help families design simple 

ways t o moni t or ef f ect s of 

t reat ment ( eg, behavi or di a- 

ri es, pre-post behavior rating 

scales). Help the family be 

specific and create explicit 

treatment goals, designed at 

the onset of therapy, focused 

on improving the individual’s 

ability to engage and par tici- 

pate in everyday activities 

(eg, ability to focus, tolerate 

foods, and be in a room with 

loud noises). 

b. Set a time limit for seeing the 

family back to discuss whether 

t he t herapy i s worki ng t o 

achi eve t he st at ed goal s. 

4. Pediatricians should inform fami- 

lies that occupational therapy is 

a limited resource, particularly the- 

number of sessions available through 

schools and through insurance cov- 

erage. The family, pediatrician, and 

other clinicians should work together 

to prioritize treatment on the basis of 

the effects the sensory problems 

have on a child’s ability to perform 

daily functions of childhood. 

With input from the following committees/ 

councils: COCWD, ASC, SOAI, COPACFH, SOAH, 

SODBP, SON, SOEH, and COCHF. 

LEAD AUTHORS 

Michelle Zimmer, MD 

Larry Desch, MD 

SECTION ON COMPLEMENTARY AND 

INTEGRATIVE MEDICINE EXECUTIVE 

COMMITTEE, 2011–2012 

Lawrence D. Rosen, MD, Chairperson 

Michelle L. Bailey, MD 

David Becker, MD 

Timothy P. Culber t, MD 

Hilary McClafferty, MD 

Olle Jane Z. Sahler, MD 

Sunita Vohra, MD 

LIAISON 

Lt Col Della Livesay Howell, MD – Section on 

Young Physicians 

STAFF 

Teri Salus, MPA, CPC 

COUNCIL ON CHILDREN WITH 

DISABILITIES EXECUTIVE COMMITTEE, 

2011–2012 

†Gregory S. Liptak, MD, MPH, Chairperson 

Nancy A. Murphy, MD, Interim Chairperson 

Richard C. Adams, MD 

Robert T. Burke, MD, MPH 

Sandra L. Friedman, MD 

Amy J. Houtrow, MD, MPH 

Miriam A. Kalichman, MD 

Dennis Z. Kuo, MD, MHS 

Susan Ellen Levy, MD 

Kenneth W. Norwood Jr, MD 

Renee M. Turchi, MD, MPH 

Susan E. Wiley, MD 

LIAISONS 

Carolyn Bridgemohan, MD – Section on De- 

velopmental and Behavioral Pediatrics 

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Georgina Peacock, MD, MPH – Centers for 

Disease Control and Prevention 

Bonnie Strickland, PhD – Maternal and Child 

Health Bureau 

Nora Wells, MSEd – Family Voices 

Max Wiznitzer, MD – Section on Neurology STAFF 

Stephanie Mucha Skipper, MPH 

† Deceased. 

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