Autism Review

For as long as I can recall most therapists talk about tactile defensiveness as being an oversensitivity to touch - and that it includes a sympathetic nervous system response that is allegedly 'out of proportion' to the incoming stimulus. The result of this characterization is that most people start looking AT the sense of touch as the primary culprit of the problem. This is why you then see therapists struggling to describe what textures a child tolerates and does not tolerate. This structural understanding of the problem is reinforced by sensory integration theory which posits that children are not able to process incoming sensory information accurately.

In the real world this model is poorly described and subsequently notoriously unreliable - and again you will hear therapists explain the inconsistency in sensitivity as a "sensory modulation" problem because sometimes certain kinds of touch will be tolerated and other times it will not be tolerated. Still, the focus often remains on describing the problem in terms of the sensory channel and not as much on the central nervous system mechanism that governs the response.

I would like to see all this evolve to a point where people understand that there is not a problem WITH the sense of touch. The problem can be observed THROUGH the sense of touch.

This is a pretty important distinction because when we continually describe something as 'tactile defensiveness' it leads people down a natural thinking path that the tactile input is the critical issue that requires study or intervention. That causes us to wring our hands over trying to find a way to accurately and reliably measure tactile localization or how we can provide an alternate form of tactile stimulation that will help to 'modulate' the system. We would probably be better served by also looking at central control mechanisms as opposed to only considering these peripheral tactile-based mechanisms.

This reminds me of some rather large fights I had with a neurologist who HATED splinting when I told him we were trying to see if we could achieve an inhibitory effect on spasticity by effectively lengthening the muscle and 're-biasing' the muscle spindle. He understood spasticity as something that was centrally driven by a lesion and not a function of a whole system - so he used to take my splints and toss them in the trash can. Anyway, not to get off topic, but I am saying that I am aware that we might have some impact on a central problem by intervening at the periphery but that doesn't mean we ignore the central problem either. So I am hat tipping to that crotchety old neurologist.

Still, therapists bristle at any threat to their longstanding description and understanding of the 'tactile' problem. Several notable studies have been completed that talk about 'anxiety' constructs but as close as these studies come to hitting what I think will eventually be considered as the pay-dirt of this problem, they tend to veer off and talk about how this 'anxiety' is co-morbid to the sensory processing problem. This is a classic example of several people feeling different parts of the elephant and describing the elephant in absolutely disparate terms.

I've been thinking about all this again lately because I had a young fellow come into my office recently who stated, "I can't write because I can't touch paper. The only way I can write is when I put my papers into these plastic protectors and I use a marker to write on the plastic."

"What do you mean - you can't touch paper?" I said. This was new for me to have a child be THAT aversive to paper - and then I was doubly surprised to see another clinician describe the same level of sensitivity on an online forum - and TRIPLY surprised to see that for the child discussed on the online forum the school came up with the same solution of writing on plastic overlays. So either we are all talking about the same child or people around the country come up with the same 'solutions' to this 'problem.'

"Touching paper gives me goosebumps. See!!!" Then he dragged his index finger across the VMI test booklet and pointed to the piloerection on his forearms. Indeed, he had goosebumps. "Its not just goosebumps. Touching paper also makes my teeth hurt."

The problem with my young friend's story is that as far as I know there are no tactile receptors for paper. Over the course of the evaluation I observed him touching other objects of equivalent texture quality and with equivalent amplitude or force. I also brushed papers against him when he wasn't paying attention and couldn't elicit the same physiological response. I also focused his attention on his hands while I was checking range of motion, and while doing so brushed and rubbed his forearms against the VMI test booklet that was resting on the table. No aversive response. Still, the piloerection that he could automatically elicit by dragging his fingers across paper was very real.

I qualitatively checked his stereognosis using the SIPT Manual Forms Perception subtest and he was functionally unable to discriminate the forms, but he did not have any defensiveness to the plastic pieces of the test. I also checked for defensive responses by trying the Localization of Tactile Stimulation Test and the Graphesthesia test and he was not defensive to that stimulation either. He had no other apparent or reported defensiveness to sound or movement or visual stimulation. He was a very picky eater. Still, none of this helps to explain his defensiveness to paper.

I get a lot of referrals like this, actually. Kids are 'defensive' to their clothing, or they are 'defensive' to their shoes/socks, or they are 'defensive' to having their hair washed. These all tend to be very focal kinds of defensiveness and in fact they cause severe functional difficulties with ADL completion or school. But how can we understand this in 'sensory' terms when there is no physiological explanation or consistency based on what we KNOW to be true about tactile perception?

The answer to this is that we need to understand that sometimes the explanation is best found in behavioral terms and conditioned responses. Although there may have initially been some developmental sensitivity or even a negative sensory experience, the operant cause of the piloerection and tooth pain can sometimes be conditioned fear.

If we consider this as a possibility, our interventions change dramatically. You still might try some 'brushing' technique IN CASE there is some local physiological dampening effect on the overall amplitude of incoming sensory messages to the CNS. You might get equal impact off of the placebo effect of giving the child attention and suggesting that the intervention actually works. You might also try progressive desensitization and relaxation training.

The particular child I saw had many other problems in addition to his 'paper sensitivity.' There were perceptual deficits, hyperkinesis, mood instability, and many other problems that all can cycle around a chicken or egg argument of what was causing what. I can state rather emphatically that he does not have tactile defensiveness (if that even exists). However, we can understand his central emotional regulation problem that is triggered by a conditioned fear to very specific forms of tactile input.

This distinction matters because accuracy in understanding the problem can lead us to correct interventions that respect the scientific evidence and our understanding of how sensory processing actually works.


Quick thoughts for background reading:

Masuda, Y., Suzuki, M., et.al. (1999) Developmental and pharmacological features of mouse emotional piloerection. Experimental Animals, 48(3), 209-211.

Reynolds, S., & Lane, S. J. (2009). Sensory overresponsivity and anxiety in children with ADHD. American Journal of Occupational Therapy, 63, 433–440.

I am writing this entry in the hope that it will be referenced as well as my other pages on "Adult Sensory Processing Disorder." Look here for more information.

As I have discussed in the past, I advocate a conservative approach to understanding these difficulties that people report. Unfortunately, there are some rather unscrupulous people in the world who have set up websites where you pay money to take a test and then they will tell you if you have "Sensory Processing Disorder." I won't link to those sites because I don't want to drive any traffic to them.

People who are having difficulties may be easily fooled by this kind of scam. It is a free world and if people want to pay money for Internet tests then I suppose that is their business - but I am also free to state that in my opinion sending money to get this "diagnosis" is a colossal waste of money and may actually divert people from seeking appropriate care from their doctors. If the people who made these online tests are therapists, and there is no evidence actually that they are, then they are also extraordinarily unethical.

That leaves you with some unknown people capitalizing off of the needs of others. To me, it is abhorrent behavior. Here is an email that someone just sent to me:

Hi,

I am "losing my mind" so to speak and think I may have sensory disorder.

I took a test online and had a high score on most items... what do you recommend as the next step for actual diagnosis?

Which type of doctor do I make appointment with? Or can OT administer testing without a doctor?

I am scared and confused and looking for help to point me in the right direction so I can get some relief. I currently see a family doctor for ADD and take meds but it's not helping...

Thank you for your time,

NAME REDACTED

I am sorry that people like this are wasting money on these unknown and online "Sensory Processing Diagnosticians." People who are experiencing difficulties should speak directly with their MD if they think that their current intervention plan and medications are not effective.

There are NO valid online tests for sensory processing difficulties. If people believe that they are having difficulties that interfere with daily life functioning they should speak to their MD who can refer them to an OT who will collaborate with the MD to develop an appropriate and evidence-based intervention plan.

For whoever is posting and profiteering from these online "tests" - you should be ashamed.

The March/April issue of AJOT has two articles on sensory integration that are worth discussing.

The first is Verification and clarification of patterns of sensory integrative dysfunction (Mailloux, Mulligan, Smith Roley, et.al.). This article is another factor analysis study that has to be considered in the context of a number of other studies including Ayres (1989) original cluster and factor analyses that went into SIPT standardization, Mulligan's 1998 and 2000 cluster and factor analyses, and the critically appraised topic written by Davies and Tucker (2008).

I'm not sure how many street level practitioners read cluster and factor analysis studies but I don't think that most people put this on top of their reading list. I think this is because we don't spend a lot of time educating practitioners on these methods and what they mean. I personally think that these statistical models are interesting but I also understand that they have a serious fundamental flaw in that they are based on heuristic models of interpretation. In other words, in the case of the SIPT, we are trying to label conditions based on a defined set of variables that supposedly 'make up' a construct that is called 'sensory integration' or perhaps 'praxis.'

The truth is that we are using those 17 tests as a point of convenience even though we have a lot of data that tells us that there are individual problems with some of the reliability of some of those tests. On top of that problem we also have expanded our thinking into more dynamic systems models and to be honest I have no idea how you apply factor analysis inside a world of non-linear dynamics. I guess I know enough to know that I don't have the math background for this kind of thinking.

Maybe it isn't a math problem as much as it is a philosophical problem - and that brings us around to the heuristics problem. I just can't help thinking that we are making contrived conclusions that might not really be a reflection of a full data set. If you go through and read all the factor and cluster analyses and the interpretations of these studies that have been done you will see that factors and clusters have been identified, then clarified and redefined, and in this most recent study we have come full circle to claiming consistency with the orginal conclusion of Ayres.

If there are any street level people reading this stuff they are probably wondering:

1. So which is most 'true' - the Ayres data set or the Mulligan data set or the interpretation of Davies/Tucker or now the Mailloux/Mulligan/et.al. data set.
2. In the 20+ years of variability on conclusions has any of this made a difference anyway to how clinicians are practicing?
3. Is this even in sync with the notion of occupation based practice?

I am concerned that decisions will be made for restandardizing the SIPT based on the heuristic interpretation of these data sets. Since we haven't done a historically good job of even definining what SI is that this is kind of like building a castle on a sand foundation.

All of this leads to the overwhelming question of WHO CARES and WHO IS THIS REALLY WRITTEN FOR ANYWAY? This research has no application to practice. My concern is that in the next 20 years someone else will decide to be an eigenvalue purist who thinks THERE MUST BE a 6 factor solution and they will contribute to another 20 years of gear spinning. Will this bring our practice further along?

******************
On to the next article...

Parham, Smith Roley, May-Benson, et.al. wrote Development of a fidelity measure for research on the effectiveness of the Ayres Sensory Integration Intervention (ASI). This is a long anticipated article that developed a fidelity measure for use in research on ASI. I understand that this is not a practice tool, but the point is to more clearly operationalize our terms and definitions for research - which in theory is supposed to eventually inform our practice.

Structural and process elements were identified but only process elements were validated. Unfortunately, the only people who can tell you if you are appropriately incorporating the process elements are a handful of specially trained experts who defined what the process elements are. This kind of drives the whole fidelity instrument into a ditch of confirmation bias - and really I just don't know what to say about it from that point.

Structural elements are identified but were not validated. Presumably these would be elements that could be more easily confirmed by untrained people. The problem with the structural elements is that you need to have post professional training in SI, there are restrictive space and equipment requirements, and there are requirements for levels of communication that are rarely achieved in many practice settings.

These elements make ASI as it is described as being apropos of nothing, because if only a couple experts can tell you if you are doing it, and if your practice setting precludes the structural elements - then a fidelity measure won't matter much because the model is not applicable to the realities of street level practice. In my thinking, these two articles do not contribute to practice and demonstrate quite clearly that we should re-work the model until we come up with something that reflects actual practice and perhaps incorporates a broader occupation-based framework. While we are at it we might drop those sensory processing interventions that have not been supported by research.

References:

Ayres, A. J. (1989). Sensory Integration and Praxis Tests. Los Angeles: Western Psychological Services.

Davies P. L., Tucker R.(2010) Evidence review to investigate the support for subtypes of children with difficulty processing and integrating sensory information. American Journal of Occupational Therapy 64, 391–402.

Mailloux, Z., Mulligan, S.,; Smith Roley, S., et.al. (2011) Verification and clarification of patterns of sensory integrative dysfunction. American Journal of Occupational Therapy, 65, 143-151.

Mulligan S. (1998). Patterns of sensory integration dysfunction: A confirmatory factor analysis. American Journal of Occupational Therapy, 52, 819–28.

Mulligan, S. (2000). Cluster analysis of scores of children on the Sensory Integration and Praxis Tests. Occupational Therapy Journal of Research, 20(4), 258–270.

Parham, L.D., Smith Roley, S., May-Benson, T.A., et.al. (2011) Development of a fidelity measure for research on the effectiveness of the Ayres Sensory Integration Intervention, American Journal of Occupational Therapy, 65, 133-142.

Just a quick couple thoughts as I got a few emails asking me to comment on an article in the new AJOT. The study people are interested in is Effectiveness of sensory integration interventions in children with autism spectrum disorders: A pilot study. (linked for those of you who have access). The study found that both intervention groups demonstrated significant improvements toward goals on the Goal Attainment Scale, but the SI group demonstrated more significant improvement than the FM group. Also, the SI group displayed significantly fewer autistic mannerisms than the FM group as measured by a sub test of the Social Responsiveness Scale.

One of the nicest features of this study is that the researchers completed a series of fidelity measures on the interventions. This is a big step forward because so many of our research studies state that the intervention reflects sensory integration but this particular effort describes a solid fidelity test for each of the interventions provided (fine motor and sensory integration).
The authors state that "one of the purposes of this pilot study was to provide information to guide the development of future RCTs..." I believe that they met this objective well, particularly in consideration of the fidelity measures.

The researchers report that heterogeneity in their intervention groups may have impacted their results. This is probably quite a profound issue. Although we don't know the actual differences between individuals in the study, the tremendous variability in functional levels in ASDs is something that probably should be addressed in study design. The researchers took some positive steps to exclude people who have Asperger Syndrome and to restrict participation to Autism or PDDNOS. This is a good step, but I am not sure that it is an adequate step given the variability in this population.

There are a few design issues that I think need additional discussion. It is difficult to judge the relevance of the outcomes because there is not a non-intervention group. This makes it very difficult to factor out any Hawthorne-type effects. Similarly, the authors conclude that the study supports use of Goal Attainment Scales (GAS) for this type of research but I am not so sure about this. The challenges of GAS include possibly relevant confirmation or expectancy biases if the measurements are being made by the intervening therapists or the parents of the children in the study. I think that GAS can be strengthened if there is a way to more objectively measure progress based on those GAS measures by having independent assessment of results.

Use of the QNST-2 and the SPM are also appropriately identified as limiting because neither is designed or has been confirmed to be a valid pre-test post-test measure. I think that this is good reason to further narrow subject selection and find accepted tools that measure change across time instead of using this as justification to use GAS. That is easier said than done - undoubtedly - but it is just a thought.

The intervention provided in the study was quite intensive (three times per week for a six week period). In actual practice this kind of intensity is often not feasible (either given insurance restrictions or school district authorizations). This makes it a little difficult to know how this could or would generalize in a real-world setting.

Finally, the study is a little unclear about who was providing the SI intervention. The study explicitly states that a graduate student provided the FM intervention under supervision. It is unclear if the graduate students are certified or not, but given that they were being supervised it seems to indicate that they might not be certified. Given the relative lack of experience of an uncertified graduate student and the particular challenges of providing effective intervention to children who have ASDs, it might be important to control for the experience of the therapist between the two groups. It is not clear if graduate students also provided intervention to the SI group. This is a critical distinction and could have an important impact on progress made by the different groups.

I encourage everyone to read and discuss this study. It is a good step forward in our research regarding sensory integration and gives a lot of important information on how future studies might be designed.


References:

Pfeiffer, B.A., Koenig, K., et.al. (2011) Effectiveness of sensory integration interventions in children with autism spectrum disorders: A pilot study. American Journal of Occupational Therapy, 65, 76-85.

There are quite a few opinion pieces in this blog about the state of sensory integration as a model for occupational therapy - the reader is particularly referred here and here for quick background if needed.

Continued evidence that occupational therapists have lost control of the 'sensory integration' narrative can be found in the October 2010 Scientific American Article by Nancy Shute entitled "Desperation drives parents to dubious autism treatments."

Sensory integration therapy is described in the article as ranging from "wrapping children in blankets or placing them in a hug machine to having them play with scented clay..." They also note in the article that this intervention costs families up to $200 per hour or $6000 per year. Sensory integration is listed in a chart as Temptations: Dubious Therapies.

These kinds of articles always seem to generate responses from people who disagree from them, but before anyone responds I think this is a good opportunity to pause and reflect on why we are finding ourselves in this position. The 'Fidelity' problem has been discussed forever and our field has not come together to find a solution. We still have different 'camps' of people supporting different iterations of what should be included in sensory integration models and the result is ongoing confusion in the public square. We have too much mythology and too little evidence when it comes to our interventions. The public is confused because we have confused them.

What do parents want? Perhaps OTs should listen closely to Jim Laidler who was interviewed in the article: "Obviously, the goal of my family, and most families, is to lead as normal a life as possible. Normal is going out to dinner as a family."

We can use our knowledge of sensory processing to help us understand why children who have autism have difficulties in these environments, and make suggestions to families on how to help mediate those difficulties. We can also use training methods, direct practice, and skill development to help children learn to function in those environments.

Or we can let people continue to think that we are putting blankets on children and letting them play with scented clay, charging them exorbitant prices for this 'expertise.'

What kind of occupational therapy are you promoting?

Dear Dr. Alterio:

I read your article on Tomatis and other auditory integration programs. My son has autism, and we are midway through a program that uses a form of Tomatis. Their company is called {REDACTED}.

My gut is telling me that this may be a scam, but as a concerned parent with a child with Autism I'll admit that I am easy prey. During one visit the instructor (I now question whether she was an OT) told me that my son fell asleep during the session. I asked how long he was asleep, and she said about 45 minutes (the session was only 80 minutes long). She then proceeded to tell me that that was ok, because he had the head phones on during that time. Anyway, before I sink another $4k into this program, I would be interesting in knowing if you've heard anything about this facility, as well as you opinions on this form of therapy. If you think I'm being sold snake oil, please let me know. As I said, my gut is telling me to use the money to further his ABA sessions.

Thank you,

A Concerned Parent

**********************************************

Dear Concerned Parent,

I have never heard of this center so I really have no information about them or their work.

I have not changed my opinions about these interventions and I don't recommend them for families. These techniques are not supported by research and they are largely disregarded by most practitioners. Some of these techniques might be interesting to research and I am not opposed to that but I disagree with marketing them to families and charging such high out-of-pocket prices. It is my opinion that in general you would probably be better off investing your time and resources into ABA interventions or functional-based therapy sessions. Any type of ABA or functional intervention may also include some components of addressing atypical sensory processing characteristics and traits, but they will do so within the structure of a scientifically defensible intervention plan.

I strongly encourage you to consult with your pediatrician, psychologist, or other trusted health care practitioner to get some additional advice on what the best plan would be for your child and your family.

Generally, a good measure of the 'acceptability' of an intervention program is the degree to which it is covered by most medical insurance, or the degree to which it is readily accepted by the professionals in your child's school, and whether or not it is supported by your own pediatrician.

For example, occupational therapy may be covered by your medical insurance if the program is time-limited, if there are measurable and functional objectives, and if the program is designed to address functional performance deficits by providing your family with activities you can engage in over time to help facilitate skills and normal development. That would be very different than a program that charges you thousands of dollars in out of pocket cash because 'insurance won't reimburse it,' does not have specific measurable or functional objectives, and is not generally accepted by the other professionals in your community.

I understand the allure of these kinds of interventions but if they indeed worked as well as advertised they would be well accepted, there would be research supporting the techniques, and national experts would be telling everyone to go and get the intervention. The facts instead are that these techniques are marginally accepted (at best), there is no research to support them, and national experts tend to advise families to avoid these experimental intervention methods.

I know that hearing an anecdotal success story is usually more than enough to spark hope in a family that is trying to find the best intervention for their child. You are wise to question whether or not this is an appropriate way for you to spend your resources. I again encourage you to speak with your child's pediatrician to help you design the best intervention program for your child.

Best of luck to you and your family.

Christopher J. Alterio, Dr.OT, OTR

Behavioral problems in children are sometimes difficult to solve. Caregivers and even professionals often search for what I call an 'easy button' to solve complex problems. I have always believed that using a general systems methodology prevents the inappropriate reduction of complex system problems to single-point causes.

Human beings are meaning-making creatures, however, and that causes us to sometimes reduce complex data into single-points even though it doesn't make sense to do so. As an obtuse example - if you ask the average person what caused the shuttle Challenger to explode they will tell you that it was Morton Thiokol and faulty O-rings. Although that is true, it is more true that there were other factors including cold temperatures, design errors, lack of redundancy, and flawed human communication.

Anyway, my point is that humans like to find single-point answers to problems and that sometimes causes people to come looking for occupational therapy evaluations. Occupational therapists have contributed to this phenomenon by suggesting that some behavior problems can be reduced to sensory processing concerns. Many people look toward 'sensory diets' or some other prescriptive sensory stimulation program (brushing, weighted vests, auditory interventions) as single-point solutions to problems.

I was recently asked to complete an evaluation on a child and this is an edited snippet of my findings:

SUMMARY:
Priscilla is a ten year old child referred to occupational therapy to determine if she has sensory processing difficulties. Although she does have sensory processing difficulties this should not be considered the only driving force behind her behavioral difficulties or overall developmental profile. In addition she also has apparent intellectual/cognitive impairment, impaired language and communication skills, fine and gross motor delays, and she has a history of multiple foster home placements. She is functioning at a four year level in all of her developmental and adaptive skills. Priscilla requires a comprehensive developmental program to address her multiple disabilities.


RECOMMENDATIONS/PLAN:
1. Review this evaluation with Priscilla's family.

2. Occupational therapy services 3 times weekly addressing motor planning and sensory processing deficits. Consultation should be provided to the classroom staff for developing a team behavioral intervention plan.

3. A strong behavioral management program, informed by use of a team functional behavioral assessment. Some of Priscilla's behaviors are driven by need for escape, others are driven by tangential reward, others are driven by impaired sensory processing. Detailed FBA will assist the team in developing appropriate interventions for targeted behavioral concerns.

4. Consider more in-depth psychological evaluation to elucidate the nature of her intellectual impairments.

After giving the evaluation to the program that made the request, I was a little disappointed to receive a phone call asking me to send a 'sensory diet' to address the child's behavior problems. Although it is true that the child had severe sensory processing problems, in my opinion it would be inappropriate to send along such a 'sensory diet' that was developed out of context from the other team members.

I asked the person making the request if the team had actually read my evaluation, because I thought it was rather clear in recommending a team-oriented FBA approach that would include multiple perspectives on the cause of behavior difficulties. I suggested a 'non-easy button' approach that would require a team meeting to review the behavior problems.

I am acutely aware that I have colleagues who would have been more than happy to suggest that the child needed a prescriptive sensory diet. That would have satisfied the single-point desire of the meaning-making humans who want a quick solution, but I fear that it wouldn't have really helped the child. Sadly, I have found over time that my unwillingness to provide a single point solution has caused people to state "he doesn't believe in sensory integration!" I am not really sure what that means, but it is a criticism I sometimes receive for not providing the single point solution on demand.

I hope that this team agrees to a meeting where we can discuss the sensory processing concerns in addition to all the other complex multi-factorial issues that are impacting this child. In my opinion this child and her family deserve this greatest possible consideration and effort.

At least once or twice a week I get email or comments on the blog from people asking me if I think they or their children have a sensory processing disorder. The range of concerns most commonly includes one or more of the following: difficulty with attention, difficulty tolerating clothing textures, dislike of certain tastes or smells, or social anxiety.

The problem with diagnosis of these symptoms is that the field of learning disabilities or psychology or even psychiatry has a very poor record of diagnostic stability over time. Diagnosis tends to take on the flavor of 'current thinking' - so for example if you had these problems in Freud's time you would likely come away with a very different diagnosis than what you might receive today. That doesn't instill confidence in a person like me who is looking for a more universal and longstanding point of accuracy about these matters. A compelling example of this is the diagnosis of pediatric bipolar disorder, effectively described in this blog post.

Another example of this diagnostic problem is an article written a couple years ago by Ben-Sasson, et. al. (2007). The article described the diagnostic/labeling differences employed by occupational therapists and psychologists when considering toddlers who had sensory over-responsivity (from the OT perspective) or anxiety (from the psychological perspective). This article effectively demonstrates how professional training and item wording can strongly impact the way that different diagnosticians interpret common behavioral attributes.

When people think that a disorder is present I believe that it is most important to begin with actually determining if there is a functional behavioral problem that is interfering with ability to carry out everyday tasks. That can help us avoid falling into the trap of labeling every nuanced form of trait or characteristic difference that people may express. Humans are natural 'meaning-makers' and we don't advance the cause of understanding our patient's concerns unless we improve our ability to become armchair anthropologists about our own professional culture.

It might be interesting to write a blog post and call it "The Elementary Forms of Sensory Processing Disorder" and see how many occupational therapy researchers get the joke.



References:

Ben-Sasson, A., Cermak, S. A., Orsmond, G. I., Carter, A. S., & Fogg, L. (2007). Can we differentiate sensory over-responsivity from anxiety in toddlers? Perspectives of occupational therapists and psychologists. Infant Mental Health Journal, 28(5), 536-558.

Neuroskeptic (January 14, 2010). A brief history of bipolar kids. Retrieved from http://neuroskeptic.blogspot.com/2010/01/brief-history-of-bipolar-kids.html

The National Autism Center published a comprehensive National Standards report regarding evidence-based practice guidelines for children and young adults who have autism. The report is an excellent summary of research about intervention methods and effectiveness. It was particularly interesting to me that this report referenced and hoped to expand on the New York State Early Intervention Clinical Practice Guidelines for autism spectrum disorders which of course is a document that is familiar to many of the families in my geographic area. The NYS guidelines were published ten years ago so an update to include new research was needed.

The new report focuses on quantitative studies and in this sense some important occupational therapy literature may not have met the inclusion criteria. There have been some excellent qualitative studies completed that make important occupational therapy contributions to best-practice considerations so I am really looking forward to the next report that promises to include qualitative methodologies.

In reviewing the report I was intrigued by the treatment classification process. It is undoubtedly a daunting task to conglomerate such a large number of articles into discrete categories. It was particularly interesting to me that many articles that have 'sensory' issues in them were listed in 'behavioral' treatment packets - for example there was an excellent article on the use of a fading technique to improve tolerance for milk drinking. Now I suppose that you could describe this intervention as a behavioral fading but you could just as easily describe it in sensory terms because in this study they manipulated amount of chocolate syrup until the child was drinking plain milk. Either way, many OTs use similar techniques when addressing the feeding problems of people who have sensory intolerances associated with their autism.

There are many other important established and emerging interventions that are used by occupational therapists and supported in the NAC document including social stories, relation/interaction approaches, behavioral approaches, and functional skills training.

This brings us to the AOTA response to the report. The AOTA response stated "We believe it unfortunate that the National Standards Report of the National Autism Center did not include valuable research findings available regarding occupational therapy and sensory integration." I don't agree - I think that there was a lot of supportive evidence for occupational therapy interventions in general and also for sensory-based interventions in particular (depending, of course, on how you are choosing to 'label' and 'categorize' the studies)! Deep reading of the report validates this observation. The NAC report validated MANY important occupational therapy intervention approaches, including some sensory-based approaches that were just labeled in different categories.

Again, the underlying problem contributing to misconceptions about the report and about so-called "sensory integration" research is an absolute mish-mash of definitions and total lack of research and intervention fidelity. It is always disappointing to see summation reports or meta-analysis mislabel sensory interventions - but this time AOTA also contributes to the fuzzy definitions. The AOTA response letter references the Case-Smith & Arbeson (2008) study that lumps 'auditory integration' and 'massage' into the sensory-based category. I know a few respected OTs who might object to passive auditory and tactile sensory approaches being termed sensory integration.

So the bottom line here is this: what are sensory integration studies and can they be lumped together with sensory-based intervention studies? Are they classic sensory integration models in specially designed play environments? Are they deep pressure massage or weighted vests? Are they listening to music with headphones? Are they gustatory fading techniques to improve tolerance to milk????

My recommendation for practitioners is to read the report and be very happy that there is so much evidence for so many occupational therapy interventions. I encourage people to use those techniques that are established or those which are emerging. For those where there are less evidence - encourage families to use discretion and try those techniques AFTER other methods have not been effective. Resources are not unending and we need to first promote interventions that have the best likelihood of success.

My recommendation to AOTA is to re-think these response letters. I believe that there can be more harm than good accomplished with responses that don't celebrate the many OT interventions supported in the report - including those sensory-based and sensory-related studies that are listed in other categories! Finally, our profession really needs to get its definitions straight and we need to tackle this fidelity issue once and for all. Harm is being done by continually failing to appropriately define these interventions and have a robust professional debate on this topic.



References:

(please read the links as well!)

Case-Smith, J., & Arbesman, M. (2008). Evidence-Based Review of Interventions for Autism Used in or of Relevance to Occupational Therapy. American Journal of Occupational Therapy, 62, 416-427.

Luiselli, J. K., Ricciardi, J. N., & Gilligan, K. (2005). Liquid fading to establish milk consumption by a child with autism. Behavioral Interventions, 20(2), 155-163.

OTs are trying to better understand the neurophysiological basis of sensory processing disorders. Several sites are conducting research using the Sensory Challenge Protocol . Preliminary studies (McIntosh, Miller, Shyu, & Hagerman, 1999) support the presence of a physiological basis of sensory modulation disorder (SMD), finding that electrodermal responses were larger in children with SMD, excepting those who were non-responders. Additionally, Schaaf, Miller, Sewell, & O'Keefe (2003) found that cardiac vagal tone index was significantly decreased for children who had identified sensory processing difficulties. These studies provide preliminary evidence that there is a physiological basis for SMD.

Another method of researching the nature of sensory processing is to look at sensory processing in people with known neurophysiological problems. Lesion studies are a classic method for understanding function and dysfunction of the human nervous system. Of course precautions must be taken when using lesion study methods: the presence of a lesion in a location may not represent the primary site of a nervous system function, despite the fact that actual function could be severely impacted at that lesion site. Circuit redundancy and multipath parallel processing can make lesion studies a little muddy.

Complex regional pain syndrome (CRPS) is a disorder characterized by chronic pain that is disproportionate to the trauma that caused the pain (NINDS, 2003). Sensory modulation disorders are identified as altered neurological thresholds to sensory information that impact on daily life functioning (Dunn, 1997). Although the exaggerated state of sympathetic arousal in people who have CRPS is not clinically identical to hyperarousal in people who have SMD, these two conditions may constitute a continuum of pathology that is reflective of sympathetic nervous system dysfunction. A more thorough understanding of these conditions, including their apparent similarities and the impact that they have on function, will provide information that can be useful when developing therapeutic interventions.

ABC Therapeutics is finishing up a small scale study that is looking at the Adolescent/Adult Sensory Profile test scores of adults with CRPS. This study will explore the sensory processing abilities and occupational performance of adults who have CRPS.

On another front, we are also completing some preliminary literature review on "Type T" personalities. We hope to use a similar design (as above) using the Adolescent Adult Sensory Profile to explore if there are measurable differences in test scores in adolescents who have this profile or those behavioral characteristics. Another interesting twist is to see if we can find a tool that has been used to measure what I am calling 'inverted-T' personalities. I am interested to see if we can find a tool that will behaviorally identify these people and then see how they self-rate on the Adolescelt Adult Sensory Profile.

Please feel free to contact me if anyone is interested in learning more about the work we are doing here on this topic.


References:

Dunn, W. (1997). The impact of sensory processing abilities on the daily lives of young children and their families: A conceptual model. Infants and Young Children, 9, 23-35.

Farley, F. (1991). The Type T personality. Chapter in L.P. Lipsett & L.L Mitnick (eds), Self-regulatory behavior and risk taking: Causes and consequences. Norwood, NJ: Ablex Publishers.

McIntosh, D.N., Miller, L.J., Shyu, V., Hagerman, R.J. (1999). Sensory-modulation disruption, electrodermal responses, and functional behaviors. Developmental Medicine and Child Neurology, 41, 608-15.

National Institute for Neurological Disorders and Stroke (2003). Complex Regional Pain Syndrome (also called Reflex Sympathetic Dystrophy Syndrome) Fact Sheet. Retrieved May 14, 2004 from http://www.ninds.nih.gov/health_and_medical/pubs/rsds_fact_sheet.htm

Schaaf, R.C., Miller, L.J., Sewell, D., & O'Keefe, S. (2003). Children with disturbances in sensory processing: A pilot study examining the role of the parasympathetic nervous system. American Journal of Occupational Therapy, 57, 442-449.

Advance warning: this is not for the faint of heart. If you are easily offended, please move on.

I don’t want to discuss too many details because this is a sensitive situation, so I will try to focus my discussion on the issues of sociobiology, sensory processing and behavioral analysis, disability rights, and of course the carceral archipelago.

I get the most interesting referrals. A recent one was for a young adult who has mild to moderate developmental disabilities who was removed from his community vocational placement because of inappropriate sexual behavior. A psychologist had the idea that perhaps some of the behaviors were generated from a ‘sensory seeking’ type of profile so I was asked to assess this area and provide some input for the team to consider.

I would like to offer an analogy for purposes of beginning this discussion. I am not equating human and animal behavior by giving this example, but rather trying to find a means of opening a discussion on instinctive sexual activity. So, my poor dog Hunter will serve as the focus of the conversation (and I label him as such because his ‘personal’ information is about to be posted for the world to see).

Hunter has been physically castrated but he still has some instinctive sexual urges. I suppose that his adrenal glands can still produce some androgens, so the castration couldn’t have totally eliminated testosterone from his body. This could represent some hormonal contribution to his behaviors, although this would presumably be small.

Sexual activity has a social component, so it is important to consider this angle as well. We were careful to establish that humans are the alphas in the family. So although it kind of grossed out the kids, I wasn’t really surprised when one of them came running up the stairs screaming “Help! Help! Hunter is humping my stuffed panda bear!” He had to find something to dominate, I guess.

Hunter is a sensory seeking dog – just like most golden retrievers. But I don’t know that my dog has a sensory processing disorder. I also don’t know that if I put him on a sensory diet that I would be able to materially change his episodic humping of the stuffed panda bear. I stand firm in my reasoning that makes me believe that poor Hunter does not have a sensory disorder.

So how can this relate to the referral I received?

Here is where the disability rights issues enter into the equation. My jaw dropped when I read it, but the fellow I assessed receives Depo-Provera shots. It just grates at my sense of morality – this fellow can read at a 3rd or 4th grade level, communicates well, and lives in a community setting. I understand that there has to be some concern for the safety of others but is chemical castration ethical in people who have developmental disabilities? Anyway, right or wrong, hormones obviously can’t totally explain his behaviors because he has been essentially castrated but the behaviors persist.

From a sensory perspective, I don’t know that I will focus my recommendations on any kind of sensory program. I gave the Adolescent/Adult Sensory Profile but didn’t score it yet – although I wouldn’t be surprised if he has some sensory seeking tendencies. I just don’t know if there is a lot of face-validity to the notion that sensory seeking tendencies would lead to paraphilias in whatever forms. Certainly sensory stimulation is part and parcel of sexual activity but it is another leap entirely to state that people who demonstrate ‘alternate’ sexual activities are primarily driven by sensory seeking tendencies. So I am willing to consider the hypothesis, but not willing to entirely focus my recommendations that way.

If we eliminate hormones and don’t want to accept sensory explanations, we are left with the social contributions. This is where we have to discuss the carceral archipelago.

Sexuality is instinctive, and unfettered or unrepressed sexuality can be interpreted to represent a range of behaviors. Instinctive sexuality might represent a lack of inhibition such as could happen with a person who has cognitive deficits. Instinctive sexuality might also represent a total lack of a moral compass such as with a pedophile. I imagine that forensic psychologists have to cope with this issue frequently, even though there is some debate about the DSM-IV-TR diagnosis of Paraphilia. To label something as deviant is to pass a moral judgment on the activity, and it seems that a lot of psychologists are interested in avoiding a repeat of the homosexuality debate.

The System (whatever that is) decided that castration was an answer to the problem – because the System Administrators have to dance around the issues of what constitutes appropriate vs. inappropriate sexual behavior. This is an error of magnificent proportions on so many fronts. I challenge whoever provides a paraphilia diagnosis to hang out for a weekend in the dorms of a bunch of college aged men. You will see all kinds of sexual obsession and even paraphilia in a college dorm. The difference is that college aged men generally have superegos that prevent them from acting on these obsessions (please let’s not talk about lacrosse players at Duke).

It seems to me that what this fellow is missing is a filter so that he will keep his proclivities to himself. His behaviors are inappropriate but I know that his thoughts are relatively common. He just needs to unplug thought from action. Or at least be a little more discriminatory about where and how he expresses himself. He is mentally retarded and he has some other developmental disabilities. Is it a surprise that a few social filters could be missing?

So how do missing filters contribute to non-criminal sexual ‘deviance.’

Prison Systems support and reinforce homosexuality – simply because sexuality becomes an issue of opportunity and availability (and perhaps power). Group homes for people who have developmental disabilities can do the same thing. Group homes can socialize a young man who lacks filters into an environment that is primarily male. Then consider that there are limited opportunities for socializing with women. Then consider that there is a failure in providing normative opportunities for psychosexual and social development. These factors are at the root of ‘situational homosexuality’ or ‘behavioral bisexuality.’

When the target of a sexual advance is non-consensual, people don’t stop to think about the roots of the problem. Instead, the System apparently moves with lightning speed toward Depo-Provera, behavioral intervention plans, and wacky ideas like sensory diets to solve hypersexuality. We have to know better than this.

If we had a humanizing environment and system of care for people who have developmental disabilities we would not create or contribute to these problems. You can not take a young person who is developmentally disabled, place them in an institutional environment, and then expect that they will develop normally. So even though we all went along with deinstitutionalization and thought it was the best thing to do, we are finding out that the creation of mini-institutions in our communities has not solved the problem. Everyone knows it too – which is why you will see people screaming “Not in my back yard!’ at zoning board meetings across the country whenever someone tries to open up a community residence.

So a sensory diet won’t solve this problem. Neither will chemical castration. Neither will placement far away from society. The real answer lies in providing opportunities for normal development, including normal education, normal occupation, and normal socialization. Nothing could be so simple, and yet so hard for the System to provide.