Saturday, January 07, 2017

Deconstructing the myth of clothing sensitivity as a 'sensory processing disorder'

Please note first that there is no formally recognized clinical designation of  'sensory processing disorder.'   It is a term constructed by occupational therapists that has not been formally recognized by the larger medical community.

In our clinic we receive many referrals from local pediatricians when parents have concerns about children being overly sensitive to their clothing.  Most often the children referred are from four to seven years old and the families are severely disrupted by the children's behaviors and responses to clothing issues.  Commonly, children will have severely constricted tolerance for certain outfits, want to wear the same clothes repeatedly, complain that clothing is itchy/scratch/bumpy/wiggly/ouchie, and this all leads to disruption of daily dressing routines.  There is no doubt that the behavioral concerns are very real.

The pediatricians tend to be appropriately conservative and provide families with good behavioral management suggestions before making a referral.  Families are very challenged with managing the problem and often resort to online assistance before being referred to us.  Most parents have already completed sensory questionnaires online, tried seamless socks, and read books on sensory sensitivity in children long before they ever come in for an occupational therapy evaluation.

The pre-conditioning that parents receive online is unfortunate because one of our first objectives in assessment is to inform the parent that it is important that we don't want to fall into the trap of trying to identify the nature of the problem before we even complete any testing. 

For this reason we do not have the parent complete any sensory-based questionnaire in our office as we find that these assessments serve as a point of confirmation bias as soon as parents begin to answer the questions.  Instead, we complete these assessments last - after all other observations are completed and after we have already discussed results of other tests with the families.  We also have the parents complete these assessments remotely via computer administration to encourage as much neutrality into that line of questioning as possible.  Even when we get the results, we tend to give them very little weight given their tendency for confirmation bias.

It is critical to inform parents that most children who have sensitivity to clothing do not have any 'neurological-based sensory processing disorder.'  We carefully educate parents and help them to understand that the presence of a neurological condition would be supported if the child has accompanying deficits in motor skill, motor planning, attending, socialization, and learning.  So, for all children who are referred because of 'clothing sensitivity' we complete a thorough developmental assessment including motor, language, cognitive, social, and adaptive domains.

We are also very careful to educate parents that there are no unique sensory receptors that respond only to clothing, or that only respond to certain kinds of clothing, or that only respond to certain kinds of clothing in the morning when a child is getting ready to avoid missing the bus.  It is also important for occupational therapists to reflect on their training in anatomy and neuroanatomy so that they remember tactile processing pathways, affective limbic connections, and neural regulatory mechanisms.  It is difficult for a therapist to justify calling a clothing sensitivity a 'neurological tactile defensiveness' if they spend any amount of time reflecting on evidence associated with neuroanatomy and behavioral correlates.

There are thankfully only a very few children who, when tested, exhibit concerning delays in these other areas.  Such children sometimes go on to have diagnoses of autism or dyspraxia or attention deficit disorder.  In our experience these constitute an extreme minority of the total population of children who have clothing sensitivity.

The vast majority of children do not have any corresponding developmental delays.  They are sometimes 'slow to warm up,' have some mild socio-emotional delays (people often use the word 'immature' but I am not always happy with the negative connotations of that term), or have some mild degree of anxiety or obsessive tendencies.  Sometimes they have experienced varying degrees of normal developmental trauma that is not handled well - death of family member, divorce, birth of new siblings, family stressors, etc.  Often it is a combination of many different factors.  The fact that most of these children do not have serious developmental conditions is actually a good thing - and that is something that we reinforce to parents.  At the same time, we are always careful to remind parents that the absence of a serious developmental condition does not minimize the functional behavioral problem that they are experiencing at home.

The vast majority of these situations are easily managed with some parental coaching, some developmental support, and some cognitive-behavioral language re-framing for the children - e.g. "These socks are itching me a little, but that's ok!"  Sometimes for older children behavioral contracts and confidence building positive behavioral support models can be very effective.  Most often we need to de-condition the parents from reinforcing the children's behavioral responses.  All of this can be generally accomplished in a few sessions, at most.

The worst thing that occupational therapy professionals can do to families is to reinforce a mythology that the child has some 'sensory processing disorder.'  This is dangerous because it pathologizes a very common early childhood behavioral response pattern to stress.  It also externalizes the nature of the problem in such a way that the family becomes dependent on the occupational therapy 'expert' who alone 'understands' and can 'solve' the problem.  This commonly leads to over-utilization of therapy which is critical to avoid.

I would like to encourage my occupational therapy colleagues to reconsider the way that  they talk to families about these matters.  There are pages and pages of Google search results that point parents to a mythological sensory 'diagnosis' - and this far outstrips the actual incidence of significant developmental problems that may have sensory modulation difficulties as a feature (e.g. autism).  Again, most children who have these atypical behavioral responses do not have significant developmental delays.  The pages and pages of Google search results should reflect positive behavioral supports and cognitive-behavioral reframing and parent training.  Google search results should accurately reflect the actual nature of the problem - which is exaggerated behavioral response to contextual developmental stress.

This post is my effort to change the online narrative that unnecessarily pathologizes this issue as a 'sensory processing disorder.'   This too often unnecessarily sends families down the rabbit hole of a 'diagnosis' that is not accepted by other medical professionals.  Proper framing of the problem leads to appropriate conservative treatment approaches.  This should be the goal for all occupational therapists.


Anonymous said...

Thanks for this. The mythology on behavioral issues being attributed to sensory processing disorder does not stop at clothing sensitivity. In fact, it doesn't seem to stop anywhere. I work in a school district and get tons of "sensory referrals" because the teachers simply don't have time to deal with behaviors, and if OTs online are claiming that they treat these behaviors successfully as sensory issues, then the behaviors will never be adequately addressed. I am increasingly concerned about the assumption that physical aggression, vandalism, destruction of school property, and anger outbursts must be sensory in nature. When I try to suggest consequences or reinforcement as part of the plan to deal with these concerns, teachers and parents get very combative with me and ask for "more sensory."

Margaret@YourTherapySource said...

Another great, thought provoking post. I am frankly so surprised you have no comments as of yet... Anyway, you really made me think and I wrote a reflection blog post about your post. You can read it here: How Do You Talk to Parents about Sensory Sensitivities?

Christopher Alterio said...

Thanks - I enjoyed reading your post as well. I think it is a great topic for conversation! Thanks for encouraging everyone to read and talk about this issue.

Margaret@YourTherapySource said...

I agree with anonymous - "it doesn't seem to stop anywhere". Regarding the consequences, I know a special ed director who frequently asks at meetings "does no mean no?" as a starting point. If we have not said no yet to an unreasonable behavior we may want to start with that and consistency.

NH mom1 said...

Agree wholeheartedly! The effort to support the research of Dr. A. Jean Ayres has created an increasingly vague symptomatology which cannot be differentiated from (bad) behavior. Especially in school, every out of seat, work refusal, desk throwing, bolting, cursing, screaming child is offered "sensory breaks" as part of the behavior plan. The worst is parents who are looking for a sensory diagnosis to excuse their child's work refusal. Sadly, as a society we increasingly deprive children from meaningful sensory interactions. Screens have replaced tactile manipulatives at an alarming rate and the internet has falsely claimed authority to define, diagnose and treat far too many situations. Thank you for your post!