The dangers of misinterpreting grocery carts when completing occupational therapy evaluations

During a conversation someone recently described a situation where they wanted to get a cart for transporting groceries from a car to inside the house. It was a phone conversation and I was listening intently, trying to understand what this odd device was that they were describing. They kept calling it a grocery cart and all I could think of was the cart that you use in the actual grocery store - that looks like this:












The conversation moved to other topics but later that day I got an email with the following picture, along with some gentle ribbing "Don't they have these where you live?"















As soon as I saw the photograph I immediately recognized the product and knew exactly what they were talking about - but the point here is that there was an initial block that made it impossible for me to understand what was being described.

First of all, if someone where I live had one of those they would have to push or pull it several miles just to get to the nearest grocery store. Secondly, it would need to have snow tires. In other words, given my current cultural context it just isn't something that I see or experience on a regular basis.

Certainly my cultural experience is wide enough that I have experienced those grocery carts in the past. Also, I like to think that if my specific cultural experience is narrow in parts that I can at the least imagine what people are talking about most of the time.

This all creates a dilemma in an evaluation context though. Today I evaluated a child whose family was from an inner city environment and I found myself making sure that I was listening really closely. My own experience is wide enough and I was familiar with the environment and knew how to understand the language and the issues well. This afternoon I had to evaluate another child whose cultural context was an extreme polar opposite of the morning experience.

I think I heard all of the issues correctly in both contexts. I think I communicated back to the families well enough in both contexts.

The shopping cart is nagging at my conscience though, and I just think that we need to be really really careful about our own cultural blinders when we do evaluations.

Things that stop you in your tracks

I was doing an evaluation recently - and I should know better than be shocked at the things that come from the mouths of children...

It is important for therapists to be observant: it is a skill that I drill into my staff and my students on a regular basis. There is always a lot to observe with preschoolers beyond the typical issues of how many blocks they are stacking or how they are holding their pencil.

As is usual my mind was operating on two different levels during a recent evaluation. While we were stacking blocks I noticed the double whorl pattern in the hair of the five year old I was seeing and I was drifting away into some articles I read about the controversy over whether or not this was a phenotypical expression of altered neurological development and hemispheric lateralization or if it was just an incidental finding. I think that I need to read more because of the recent challenges to this concept that I am now aware of.

Anyway, then I looked at the hands of the youngster, and he had a rather notable injury to one fingernail. I was wondering if the fingernail injury would be causing him to use that hand less than typical - and then I was considering that if he was using that hand less than usual that I could make an error in the assessment regarding reporting what hand he used to do tasks - and that in total my findings could be in jeopardy because also I had to make sure I wasn't tainting this whole picture with inconclusive opinions based on the double whorl pattern in his hair. At the crescendo of my cognitive crisis in how to interpret all this data that part of my mind that operates 'in the moment' asked in a very caring way "Oh my, what happened to your finger??"

I thought he said that he injured it in a bar, and I wasn't sure I heard him correctly because my brain was so muddled with thoughts of lateralization, Geschwind and Galaburda, etc. that I just had to ask the follow up -

"What do you mean, 'It happened in a bar??!??"

Without missing a beat the preschooler says, "I hurt my finger in a bar. You know what a bar is. The place where you drink beer?"

Now I am certain that there is a simple and innocent truth behind all this, but sometimes the way things come out of kid's mouths just stops me dead in my tracks.

Folk taxonomies and sensory processing disorders

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

Revisiting predictions from the past.

I regularly try to find justification to feed my children on why they need to listen to me - so today I will co-opt this space for personal use. Over four years ago I made a prediction and a wish - and today it came screaming to life as I watched CNN in the airport on my way back home from Chicago.

All day they have been focusing their reports on how technology is being used for fundraising and to help connect and reconnect displaced people in Haiti with their families. That reminded me that I wrote about using the technology for this purpose well over four years ago - long before it was ever really used in that way!

After I posted those comments in 2005 I watched social networking for two years and wondered which social networking service would emerge on top, and then I joined Facebook in 2007 - even though it was still primarily a college student phenomenon at the time. I was promptly ridiculed by my son who told me I was 'too old for Facebook!' I remember I showed him this article and told him that soon all the old people would be on Facebook so he better watch out!

So I am glad to see the world is catching up with the crazed rantings of dynamic systems thinking. In my way of perceiving things this model of thinking is at the core of most good occupational therapy.

Occupational justice, as taught by Mrs. J.

I got an interesting email asking me what my current views of occupational justice were - this blog gets a lot of hits on that term thanks to Google page rankings and the fact that I wrote an article on the topic several years ago. I have been long disappointed that no one ever wanted to dialogue (in public) on what I wrote several years ago but that blog post sure does get a lot of hits and tends to generate 1-2 private email responses a month.

For the most part I have tried to lose the concept of occupational justice from my thinking and practice. The primary reason for my purposeful disconnect is that the term has been somewhat politically co-opted in the last two years and now holds a lot of political connotation along with 'social justice.' I also have been re-thinking the difference between occupational need and occupational right. At this time I am a little more interested in occupational needs. Rights need to be considered alongside responsibilities, but the existing political climate is less interested in responsibilities as it is interested in justice in general. That makes me tune out.

The driver for tuning out came from my kid's babysitter (strange place to obtain wisdom - but let me explain).

I remember vividly when my daughter would scream at her sister, “Casey, quit whining!” Older sisters like it when they can boss their younger siblings – at least that is what I noticed in my house. The problem that caused the whining was that my daughter Casey clearly was not impressed with what was being offered for dinner.

“You get what you get, Casey,” her sister continued. “You know what Mrs. J. always tells you.”

The relationships that the kids formed with people outside the family were always something that I have enjoyed studying. Mrs. J. knew both younger girls for several years as their after school daycare provider. Mrs. J. was a third grandmother to the girls and I always felt fortunate to have her care for the kids.

It is a simple philosophy, actually – meant to initially apply to after-school snacks. Neither of the kids were ever raw vegetable crunchers but this is what Mrs. J would regularly offer them. Although they would initially rebel against what was offered, Mrs. J. would always answer them consistently when they asked for some other kind of snack, “You get what you get.” It has become something of a rallying cry for learning how to graciously receive what is offered.

The kids learned how to generalize this lesson without my intercession. Sometimes simple messages are the ones that are most easily received. And applied

The larger application might sound somewhat fatalistic, but I try not to think of it that way. We all want things. Sometimes there are things that I want so badly that my heart feels like it is falling out of my chest. I talked before about how we are a society of people who are largely controlled by feelings of entitled immediate gratification. But sometimes we get what we get, and it is not anyone’s fault. It just is. What we make of the things we get is what matters, in the end.

I pray, regularly, so I can understand where I am, who I am, what I am supposed to do. In my own times of questioning I try to pause myself and invoke a quiet acceptance. “You get what you get.” When I hear the echo of this message through the voices of my children I realize how much that actually is.

So anyway I guess that in my thinking it is more about need, and then how we respond to the need and whether or not the need is met and how this generates meaning for our patients. Talking about rights and justice takes it all into a political spectrum that really takes us beyond the initial issue. OTs can certainly engage questions of rights and justice - but I would rather see that we first engage in better understanding and meeting needs and meaning-making.

Luke 2:10

The day before Christmas eve is always busy, and yesterday was no exception. The office will be closed for several days and there were so many things that needed to be done. Payroll had to be audited and sent out, some schools had paperwork deadlines for the end of the second quarter, schedules needed to be coordinated for time off so we were sure to have coverage for those families that wanted services next week, some end of the year banking needed to be done... on and on.

It was busy, and the message was delivered this year on cue in the form of Tina. At the very end of the day we had three families jostling past each other between appointments and Tina burst through the front door on a mission. She made a bee-line straight toward me, absolutely disregarding all the social cues that might have otherwise indicated she needed to wait. It didn't matter that other parents were standing near me, that we were engaged in a conversation, or that her own mom was trying to corral her into the waiting room - her message HAD to be delivered.

As Tina jumped excitedly from toe to toe she reached as high as she could to show me a gift card to a local coffee shop and she could barely contain herself,"Here is a $5.00 gift card so that when you are done working today you can go to relax a little and get yourself a really nice cup of coffee or maybe a hot chocolate or WHATEVER YOU WANT!"

The 'WHATEVER YOU WANT" is what caught me on several levels, and I suspect it caught all the other people in the room too. The parents in the waiting room all understood the impulsivity, and the lack of attention to social convention, and the excited lack of emotional regulation in Tina's voice. They deal with those issues themselves every day.

But what demanded attention was the purity of the gift and the absolute joy of giving - which at the end of a day that was filled with attention to comparatively inane issues - was exactly the message that I needed to hear.

Conversation with a future OT student

From: A future OT student
Sent: Sunday, December 13, 2009 7:07 PM
To: chris@abctherapeutics.com
Subject: from a future OT student: wanted to say thanks

Dear Dr. Alterio,
I just wanted to thank you for all of the great stories you posted on your blog... I am writing to you because I have been searching for stories by occupational therapists where they actually help people, where they make a real difference. After going through prerequisites, applications and finally being accepted into two of my top choice schools- I have found terrible posts on [a website] posted by ex occupational therapists and some physical therapists which all revolve around how occupational therapy is an ineffective, terrible profession to go into. They warn people to stay away from the profession. Many people have written in response to those posts saying that because of them, they have changed their mind. You helped me to not change my mind.

I started looking into occupational therapy after having worked with special needs children as an aide for several years. I particularly remember enjoying work with an occupational therapist as she treated a girl with cerebral palsy. I also enjoyed working with children with autism and Downs Syndrome. I have a back ground in the arts (thought I haven't been able to earn an income from it).

I'm just glad to hear your real stories that reveal that you really do help people, and that its not all about getting reimbursed (for something patients don't need) and [providing personal care].

I wanted to ask you what you thought of skilled nursing facilities (if you don't mind).

I also wanted to ask you if you think it would benefit my future to go to a better school like [University A] versus [University B] (which is good, but not as good in some areas). Do you think people who go to more reputable schools have a better shot at a job they want?

I hope you don't mind my questions. Initially, I just wanted this to be a note of appreciation for the work you do, and for documenting it.

Thanks a million,
A future OT student

+++++++++++++++++++++++++++++++++++++++++

Dear Future OT Student,

Thanks for your very kind note.

The Internet is a challenging place to get information because there is no guarantee that you are getting a balanced opinion and whatever you read may not always represent the true spectrum of opinion on any given topic. This even holds true for my own online writing. This does not invalidate anyone's opinions, but it is still important to remember!

As for skilled nursing facilities, I personally find them to be challenging places to work - but there is very important work to be done in those environments. I spent many hours in nursing homes early in my career, but this was before the so-called 'nursing home boom' of the 90s when the environment changed and became even more focused on reimbursement. My experience in nursing homes is that people in these facilities have incredible needs and that it is very challenging to meet those needs in that environment. The context is 'foreign' to most of the people placed there and in fact very few people choose to live in those facilities. In itself, this reality makes nursing home care tend toward tragic - at least when measured against the ruler of typical expectations of where people want to be in their lives.

There are exceptions, of course. Some skilled nursing facilities have re-engineered themselves into rehab facilities and people who reside there are only there on a short term basis for post-surgical or post-trauma recovery. Many skilled nursing facilities have sizable populations of people in this category. The problem happens when people who are elderly and experiencing declining health are determined to be 'eligible' for rehab beds or positions based upon someone else's formula. This causes unfortunate activity like rehab for someone who under other situations might not even choose it or might not even want it.

An exceptional skilled nursing facility situation I experienced was where the patients quite literally co-opted the occupational therapy room and created a 'culture' of work for themselves - they even went so far as to hang a sign on the door that said something to the effect of 'Let no one call another person's work inconsequential.' People who were long-term residents of that nursing facility came in and worked on things that they wanted to work on - some were functional activities and others were not! As a new graduate (at the time) I thought that it was my job to make sure all of their activity choices were respective of their occupational roles - any my naiveté almost prevented me from understanding that for many of these people the therapy was the environment and the culture - and not the activities! The people in this particular nursing home who created and participated in their occupational therapy routines were among the happiest residents of any skilled nursing facility I have ever seen in the twenty plus years since that time. These people, all with very broken physical bodies, represented a triumph of the human spirit that I have not again seen demonstrated - it was a rare and compelling experience.

My point is that even in desperate conditions there is hope, and hope is good when we can learn how to harness it for people who we are charged to care for.

Maybe the people who posted on those forums you refer to have lost some hope? I hope they can find it, somewhere - because spending your life doing something or being somewhere you don't want to be is not a way to spend a life.

Finally, regarding your question about schools - go to a place that feels like a match to you. Of course you should ask the school about their accreditation, graduation rate, and percentage passing the certification examination - but other than that your choice of a college has to match so many other factors in your life. Your future career as an occupational therapist will not be determined by the college that you go as much as what you choose to do with the college that you go to!

And I am very hopeful that you make all the best choices, for you!

Warm regards,

Chris

Questions about AOTA's response to the National Autism Center

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.

Sustainable communities and disaster relief for people who have disabilities

In general, people are not inspired to continue monitoring post-disaster relief operations after most of the television cameras leave. So any commentary on this topic may seem to be johnny-come-lately except for those who sustain their interest and understand how big the problem really is.

This is an attempt to refocus a little bit of attention on an issue - and I am not as interested in getting preachy as I am in shining a flashlight on issues that are good fuel for action.

There is a great competition for students to examine the challenges that people who are elderly or disabled face during and after disasters in their own cultural and local contexts. I hope some students see this and become interested in the topic.

If you need some motivation for outrage, read this first.