Wednesday, May 31, 2006
This matters because I was roasting Snoezelen a while back, and perhaps that is not fair. We need to have the debate first on what is real, and what is not real.
Sorry if this rambles, but here is my stream of consciousness: after watching a simulated combat/virtual reality training system on the news the other day I did some research on use of virtual reality environments for real-context performance enhancement. That led me to a story that reported that doctors who played many video games were better/more proficient at laparoscopic surgery than those who did not play video games.
This makes logical sense to me.
Then I got to thinking that there is some mechanism at work that makes skill sets improve or change in order to meet demands. This is related to the entire idea of evolution, that holds out that the species grows and changes for survival based on enviro-contextual demands. So, we came out of trees and walked as bipeds and developed opposable thumbs because of paleoclimactic changes and transitions from forest to grassy savannah.
The problem with this is that it assumes some degree of static adaptability: there had to be some change in the human system that caused cranial size to increase. And there had to be some mutation that caused changes to the innominate bone and led to bipedalism, and subsequently those hominids outperformed the others and subsequently survived.
This doesn't help us understand intra-generational improvements in human function related to demands, like the surgeons. I believe that if there ever was a significant point of static adaptability that set us up for planet-dominance, it was related to the development of dynamic adaptability of our nervous system.
Amoeba and planarians tend to have restricted behavioral sets. So do cats, for that matter: they can only open the door one way (unless specifically trained otherwise). There is probably an equation that could be applied across species to arrive at a dynamic-adaptability factor. Humans would be 1.0 on the scale.
Human dynamic adaptability means that our nervous systems are finely tuned to meet short-term, intra-generational change. In time, the cumulative demands on the system may lead to or support larger static adaptablity. Dynamic adaptability is why surgeons can play video games and improve their skills.
We can also look at disability models to better understand dynamic adaptability. Autistic spectrum disorders represent the antithesis of dynamic adaptability.
If you want to create some function-based descriptor of autism (in its various forms) you can use this computer engineering model to provide the best descriptor. A system has dynamic adaptability if it can adapt itself to dynamically changing environments. Dynamic adaptabilty requires autonomous systems functioning. An autonomous system is not the same as an automated system. Autonomous systems make sophisticated system-level decisions. Autonomous systems deal with unexpected situations in complex and adaptive (non-automated) ways. Automated systems are the opposite: they make low-level, mechanical decisions and are designed for special case and prescribed circumstances.
So I suggest that as OTs we look at some software engineering models to help us develop a better understanding and descriptor of adaptibility. This will take us a long way in understanding disorders like autism.
Thursday, May 25, 2006
In other words, sometimes you have to do things and label them as critical even though it really doesn't matter to you. Or even if it seems intuitive and shouldn't require labeling or undue attention.
In short, your opinion does not always matter. There are Gods to answer to, and they demand attention.
Entire afternoons can pass me by as I answer the whimsical calls of demanding Gods. Sometimes it is the call of a municipality who needs a 30th copy of malpractice insurance. Sometimes it is the call of an auditing or survey team, asking for clarification on item 27, subpart b, page 2, of a triplicate-submitted corrective action plan. Sometimes it is the dazed and confused compensation carrier who doesn't understand that the EIN number changed at the demands of the lawyer, which led to a cascading disaster of confusion because governmental and regulatory agencies just don't understand the fact that sometimes EIN numbers change.
As I hung my updated compliance posters today I stepped back and took a picture with my cell phone camera. It just seemed amusing to me.
There are just so many Gods to answer to. This is why my eyes glaze over when people ask, "So Chris, what did you do today?"
Today, I wondered where I would hang the next mandatory poster that the federal or state government thinks needs to be located in my workplace.
Sunday, May 21, 2006
I picked up the latest American Journal of Occupational Therapy this morning and was interested to find an article by Mona Sams, Elizabeth Fortney, and Stan Willenbring. The article describes a pilot study incorporating animals in OT sessions for children who have autism (Sams, Fortney, & Willenbring, 2006).
Basically, the study neasures incidence of language use and social interaction in therapy sessions that incorporate animals vs. therapy sessions without animals. I applaud the effort because this is one of those anecdotal issues where most people agree that animals can be an effective methodology, but there really is a lack of good research on the subject.
Unfortunately, there are some gaping methodological holes - some alluded to in the article and others not. They appropriately mention the non-blind conditions. Also, the primary author may have a business interest that could potentially contribute to bias.
Most significantly, I wonder if incidence of language use and social interactions would increase for any child when they were interacting with animals. The likelihood of vocalization may be greater when you are petting a llama than when you are swinging on a swing. The authors allude to this issue, and it would be interesting to measure this effect more specifically.
The authors make some references to sensory integration theory, but I am not certain that I see the connection. I understand that they were discussing Ayres' concept of inner drive and the inherent sensory aspects of the activities, but this does not necessarily make the intervention 'sensory integration.' That is another topic, I suppose.
In summary, the study is a stepping stone, despite its limitations - and for this the authors should be congratulated. In the future it would be nice to see someone do something with more rigorous conditions. Perhaps someone could try another outcome measure, such as purposeful engagement - the idea being that for the population tested there would be a measurable difference in behavior that might not also be seen if you were to expose typically developing children to the same stimulus condition. Specifically, the levels of purposeful engagement for typical children in different activity conditions (animal play vs. sensory motor play) would be at certain levels that would presumably be equivalent. I would expect that typically developing kids would demonstrate equivalent purposeful engagement across activity conditions.
In the next study, the hypothesis for the testing condition could be "Children who have autism will engage in a greater amount of purposeful engagement during animal assisted therapy than during sensory motor play. Of course, 'purposeful engagement' is the operator that needs definition and measurement parameters.
I mention this because if I had such a study in my hands at the time of my testimony for that case, I would have been able to make an even more convincing argument. Instead, I could only argue anecdotal evidence and discuss the point from a disability rights and policy perspective. Real clinical evidence can make a significant difference in people's lives - and that is why we need to have more of it.
Sams, M.J., Fortney, E.V., & Willenbring, S. (2006). Occupational therapy incorporating animals for children with autism: A pilot investigation. American Journal of Occupational Therapy, 60, 268-274.
Friday, May 19, 2006
The Board of Regents sent out their first memo where they asked for information about agency or school use of 'aversive therapies.' Apparently, aversive therapies can include
- Noxious, painful, intrusive stimuli or activities intended to induce pain such as hitting, slapping, pinching, kicking, hurling, strangling, shoving, or other similar stimulus
- Any form of noxious, painful or intrusive spray or inhalant
- Any form of noxious tastes
- Electric shock
- Water spray to the face
- Pinches and deep muscle squeezes
- Withholding sleep, shelter, bedding, bathroom facilities, clothing, food or drink or essential nutrition or hydration as part of mealtimes
- Withholding bathroom facilities, visitation or communication with family
- The use of chemical restraints instead of positive programs or medical treatments
- The placement of a child unsupervised or unobserved in a room from which the student cannot exit without assistance
Of course they wanted the name of the school/agency and a contact person.
Perhaps no one answered, because they sent out a SECOND MEMO.
It is my understanding that people who answer this call for information will probably be eligible for special awards but I don't think this is being mentioned in the memos. In addition to the special awards, people may also be eligible for more tangible consequences, outlined clearly here.
Of course, this is a serious topic, and I don't mean to make light of it, but I am just never surprised at the incredible resource drain that occurs when bureaucrats try to find very complex answers to simple questions. The full issue is laid out in this memo, where the state outlines a very simple discussion point: Should the Regents adopt a new policy that prohibits or limits the use of certain behavioral approaches, including the use of certain aversive or noxious stimuli to reduce or eliminate maladaptive behaviors of students?
In the interest of saving the Board of Regents a lot of time, I would like to suggest that there really is no need for discussion. Current New York State law and policy already prohibits this kind of intervention.
The problem that the Board of Regents probably doesn't understand is that practitioners may actually be responsible for carrying out aversive behavioral programs, as I outlined in my discussion on behavior intervention plans and the carceral archipelago. Unfortunately, they may be disguised as positive reinforcement plans - so most interventionists would never label or recognize their own behavioral program as being 'aversive.'
In the example provided, tokens were awarded for positive behavior so the child could purchase time with a favorite teacher, or purchase a community outing with a residential staff member. Certainly these are positive reinforcement programs? Or if we look carefully, aren't they really withholding visitation or communication with family by placing obtuse and contrived pre-conditions of 'earning the privilege' of contact through a token economy?
Something tells me that the psychologist who wrote that plan won't be signing himself up for a free trip into Child Protective Services investigation, with concomitant investigation and discipline from the Office of the Professions.
The real problem is that writing these memos took time, and energy, and resources. People actually spent time thinking about this. There were probably meetings. There were probably high level discussions about sending out the second memo. This whole issue has probably cost the New York State government some money.
I am certain that we have better things to do with our money than spending it on discussing inane topics in committees, sending out memos, and in the process - totally missing the real point.
Do we really need a committee to answer this question?
Wednesday, May 17, 2006
I was taught that a developmental disability was defined as a condition that was manifest in the developmental period (generally before age 22) and caused substantial limitation in functional ability. Qualifying conditions typically included cerebral palsy, autism, epilepsy, mental retardation, and learning disabilities. Along the way, I was aware that people who had traumatic brain injuries were also added to this list.
Wondering if there was some need for me to update my definition of developmental disabilities, I went to the NY State Office of Mental Retardation and Developmental Disabilities Website and found an interesting answer to my question: What are developmental disabilities? According to the website (in case you are not interested in looking for yourself), it states that "Developmental disabilities are a variety of conditions that become apparent during childhood and cause mental or physical limitation. These conditions include autism, cerebral palsy, epilepsy, mental retardation, and other neurological impairments."
I checked this definition against the federal law, the Developmental Disabilities Act of 2000. The federal government is a little more liberal, stating that developmental disabilities "means a severe, chronic disability of an individual that-
(i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
(ii) is manifested before the individual attains age 22;
(iii) is likely to continue indefinitely;
(iv) results in substantial functional limitations in 3 or more of the following areas of major life activity:
(II) Receptive and expressive language.
(VI) Capacity for independent living.
(VII) Economic self-sufficiency; and
(v) reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.
The primary difference that I can see here is that New York State actually NAMES some conditions. I wasn't able to specifically identify old New York definitions to see if they had changed. Still, learning disabilities are not named as qualifying conditions, and instead are replaced by the more generic term "other neurological impairments."
Here we can see a little bit of dancing around with terminology - the definition of "other neurological impairments" states that "While thousands of people in New York State are thought to have some type of severe neurological impairment, many of these people learn to compensate for these disabilities and do very well in life. However, some people with neurological impairments may need specialized services similar to those available for other people with developmental disabilities."
The same is not said for the other named developmental disabilities. Why not?
When you look a little closer at disability determination processes, it turns out that an advisory guidelines memorandum from Commissioner Maul dated 8/10/2001 states that there are certain conditions that automatically trigger a Step 2 and Step 3 review - which include a more in depth look at an individual's eligibility. Trigger conditions include:
Pervasive developmental disorder - NOS
Traumatic brain injury (TBI).
Attention deficit hyperactivity disorder.
Regarding these conditions, the guideline states that the Step 2 or Step 3 review is triggered when someone is "Applying for services for a person involving a disability condition which is associated with idiosyncratic or greatly varying substantiality of handicap or functional limitations, and in which the severity and breadth of functional limitations consistent with substantial handicap are not adequately assessed and documented."
This is odd, because cerebral palsy and epilepsy and other conditions not in this category are apparently exempted because their course is not as 'idiosyncratic.' This seems to be a very arbitrary distinction, particularly because there are people who have cerebral palsy or epilepsy who are much more functional than some people who have PDDNOS, Asperger's, or some learning disabilities. However, cerebral palsy or epilepsy don't automatically trigger a more in-depth review process for disability determination.
Of course there are other complex criteria to be considered - particularly focusing around adaptive behavior as measured on standardized instruments. But there is still a fundamental lack of fairness to have specific disability categories kicked into a more rigorous review process - just because.
On this issue I think the feds got it right. There is no need to 'name' the disabilities. There are criteria that need to be met, and those criteria are objective across disability categories. Developmental disability determinations should be completed with a primary focus on functional performance and whether the disability was manifest in the developmental period. This eliminates bias and creates an even playing field for people to qualify for resources.
Most importantly, we shouldn't have service-level professionals tell parents that they are 'scrambling' to find some reason why a child with a congenital neurological condition and learning disabilities should still qualify for DDSO services. "But he is not mentally retarded," the service coordinator told the parent.
This is how a guidance memo gets interpreted down on the playing field. In real life. Guidelines get interpreted, mythologies are created, and are transformed into policy practices. Then parents talk, and tell each other "don't even bother applying for services from the DDSO unless your child has mental retardation."
This qualifies as just another reason why we need to have street-level people feeding information back into the ivory tower.
Monday, May 15, 2006
I am not a mathematician, but I have a basic understanding of the concept of probability. Given my uneven degree of skill in shooting arrows, if I am to pick up a bow and aim it toward a bullseye you can apply laws of probability to determine where the arrow will hit, or in which direction it will miss, the target.
This of course assumes a 'fair' set of circumstances. Also, one would probably need to apply the law of large numbers because there is always the odd chance that I could hit a bullseye on my first attempt.
I am thinking about this because it is that time of year when parents ask we to attend CSE meetings with them. Almost invariably, the parents are not satisfied with the educational program that is being offered by the school. After 18 years of practice, I still have not had a parent come to me indicating that they need my help to get the school to offer less services, or a more compacted and efficient plan.
I am relatively certain that my practice is attracting a small subset of the whole; certainly not every parent is dissatisfied. It is accurate to say that this subset that finds me is dissatisfied, and they tend to be dissatisfied because in their opinion the school is not providing the correct amount and type of services.
So if schools are 'missing the bullseye' when it comes to parental satisfaction with programs offered, probability theory might indicate that they would miss the mark in any number of different directions. It is plausible, if one is to take an independent perspective, that the schools should miss by overproviding as well as underproviding - and that parent's responses, equally guided by probability but distributed along a normative curve, would also range from low satisfaction to high satisfaction. Given these circumstances, I am left wondering why no parents ask me to help advocate for fewer occupational therapy sessions, or to have the school back off because they are overloading the child with unnecessary services.
If we apply Occam's razor to this problem, what is the solution?
Monday, May 08, 2006
The latest study is a new CDC prevalence study on autism that has been published in the May 5, 2006 issue of the “Morbidity and Mortality Weekly Report.” Results from the two surveys suggest that as of 2004, autism had been diagnosed in at least 300,000 children aged 4-17.I have done a fair amount of reading on this topic and thought it would be interesting to share some of the other prevalence studies that have been recently published. They are listed below in 'References.'
It is all as clear as mud, of course. Bottom line: there are more diagnosed cases of autism, some of them are geographically concentrated, and this is not the result of 'diagnosis shifting.'
The population may be aging, but the population is also having higher rates of autism. Occupational therapists need to stay up to date on the latest prevalence data and trends.
Centers for Disease Control and Prevention. (2000). Prevalence of Autism in Brick Township, New Jersey, 1998: Community Report, Washington, DC. [online] Executive summary available at: www.cdc.gov/ncbddd/dd/execsum.htm)
Changes in Population of Persons with Autism and PDD In California 1999-2002: An Update http://www.dds.cahwnet.gov/autism/pdf/AutismReport2003.pdf
Croen LA, et. al, (2002) The changing prevalence of autism in California. J Autism Dev Disord Jun;32(3):207-15 Abstract available at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12108622&dopt=Abstract
Ehlers, S. & Gillberg, C. (1993) The epidemiology of Asperger syndrome: a total population study. Journal of Child Psychology and Psychiatry, 34 (8), 1327-1350. Available at http://www.maapservices.org/MAAP_Sub_Find_It_-_Publications_Ehlers_and_Gillberg_Article.htm
Fombonne, E. (2003). The Prevalence of Autism, JAMA, 289, 87-89.
Newschaffer CJ, Falb MD, Gurney JG. (2005). National autism prevalence trends from US special education data. Pediatrics, 115:e277-282. Available at http://pediatrics.aappublications.org/cgi/reprint/115/3/e277
Yeargin-Allsopp, M. et. al. (2003) The Prevalence of Autism in a Metropolitan Area. JAMA.289: 49. Available at http://www.naar.org/news/pdfs/JAMAcdc.pdf
I contrast this to working with adults who (as a population) respond very differently to a fracture than a child. Adults hold their broken extremities out like wounded paws. They don't generally rush back into activities. They take time off of work. Accordingly, the also develop complex regional pain syndrome at higher rates and have more complications. An adult who fractures their humerus may need therapy to strengthen the shoulder and to improve range of motion in the elbow. Most kids never need anything. Even when children do need therapy, they generally only need to be followed once a week to monitor a home program. I find this to be generally true even when there are temporary nerve problems that sometimes occur during pediatric supracondylar fractures.
This is on my mind because my daughter, who despite being instructed otherwise, decided to pretend to be Tony Hawk with her cousin's skateboard. As a result she fractured her left clavicle. There is little to be done about it other than wear a sling and suffer for a few weeks. She is undaunted though, and presently banging away on her drum kit upstairs to see if she will be in good shape for her upcoming concert.
Perhaps if everyone was like this there would be less of a reason for occupational therapists!
Thursday, May 04, 2006
Sometimes the simplest things slip by us the easiest.
Personal context is important to consider – otherwise the world begins to look very grim and automated. Several non-occupational therapy contributions to the scientific literature had a significant influence on occupational therapy’s move away from reductionistic models. For example, Boulding (1968) and von Berrtalannfy (1968) wrote comprehensively on the subject of general systems theory, which refocused science’s focus away from increasingly narrower ranges of perspective. Boulding also wrote about the power of subjective knowledge and its influence on all of human behavior (1966). Although I don’t believe that any of these authors are routinely cited in the occupational therapy literature, their contributions to changes in scientific thinking are related to occupational therapy’s move away from biomedical considerations and toward individually contextual theories.
I already explored some of these ideas here, in case you are a late comer to the conversation.
So who cares? Well I was staring out my window today, noticing the fact that the grass was getting greener. Then I looked at my neighbor’s lawn and decided that his was much greener than mine. In fact, his lawn is perpetually preened to perfection – kind of like this:
My lawn, on the other hand, is loaded with dandelions. I kind of like them, and since we have a large country plot of land I can get away with dandelions because they are in context, so to speak. Dandelions are ok in large meadowy fields. They are no so ok on small city patches of grass. My lawn looks more like this:
The property line is clearly demarcated – my line of dandelions goes directly up to the edge of his ‘putting green’ lawn. This is a fundamental difference between my neighbor and I. We respect each other’s preferences, and in fact we laugh at our differences.
Now if health care is ever going to be more humanistic, it needs to somehow know that I am a dandelion grower, and my neighbor is not. Otherwise we will all just be stacking cones in therapy, or something worse.
Also, the system needs to know that my brother is apparently a garden globe gazer. I personally never understood what the fascination was with garden globes and I would be dead before one made its way onto my landscaping. I was just shocked to see his garden globe in some family photos that he just sent. I don’t know why he has one, and I can barely wait to see him this weekend so I can ask. I cropped my dear sister and niece out of the photo, although I was tempted to leave them in. Here is his globe:
So the world is large, and different people inhabit it. Some are dandelion growers, some are lawn fanatics, and some are garden globe gazers. Personal context gives us a model and a reason to learn about those differences, and maybe treat people a little more individually.
Boulding, K. (1966). The image: Knowledge in life and society. Ann Arbor: University of Michigan Press.
Boulding, K. (1968). General Systems Theory: The Skeleton of Science. In W. Buckley (Ed.), Modern Systems Research for the Behavioral Scientist. Chicago: Aldine.
Von Bertalanffy, L. (1968). General Systems Theory: A Critical Review. In W. Buckley (Ed.), Modern Systems Research for the Behavioral Scientist. Chicago: Aldine.
We are in the middle of the beginnings of a New Renaissance, although you might not have noticed. Computers and the Internet have changed our lives - nothing will ever be the same again. This has broad social and cultural application - probably more fodder for another day - but I wanted to stick to the issues related to the New Revolution and writing.
All of this happened before: that is the interesting pattern of history. The Northern Renaissance followed the Italian tradition of literature that was printed in the common language of local people. This simple change in literature away from the Latin language had a profound effect on the development of regional cultures and the identities of the people who lived in the respective geographic regions.
Most notable of Northern Renaissance writing would be Cervantes’ Don Quixote. Don Quixote’s life is an allegory of the capacity for human goodness despite obstacles. It also served as a model for future fictional writing. Chaucer’s Canterbury Tales is an example of a book written in the vernacular that helped to spread the English language and ideas to common people. Cervantes’ and Chaucer’s writing addressed important issues that were meaningful to the people who read them, in the tradition described much later by Pirsig (1984) as "culture-bearing." Pirsig draws this concept from the Swedish kulturbärer, which implies that at certain times there are books (or writings) that strongly reflect the period’s values and mores. As Pirsig describes this process, the book is first written, and then the culture recognizes the work as an accurate portrayal of current values. In this sense, writing becomes an occupation that has broad social significance that is carried far beyond the individual author and reader.
So, writing is an important concept when considered as part of broad cultural development. Following the religious and social upheaval of the Protestant Reformation, the occupation of writing had a profound effect on the populace as individuals struggled with concepts of identity and meaning in their world. During the Victorian period a predominant form of writing in literature was the bildungsroman novel (Buckley, 1974, p. 13). This literary form is typically about the development of a young person and it is autobiographical in nature. The bildungsroman novel describes the protagonist’s unique journey into adulthood. The basic formula of this type of novel is that it is easily understood by people within that culture and time. The kinds of opportunities presented to the protagonist were the same as the actual experiences of common people. Classic examples of this literary genre include Dicken’s Great Expectations and Bronte’s Jane Eyre. Again, there is a theme of ‘life imitating art’ whereby common people were influenced by writing, and this in turn propelled literacy and writing within the general population. Individuals began a new kind of discourse that included interactivity with others through rhetoric. This discourse played an important role in shaping the course of human thought and world history.
As OTs, we all share some interesting stories. Some of my stories are your stories too - this is the nature of shared occupations. We all can identify with each other around common themes.
This weblog is my personal bildungsroman novel. Your comments contribute to interactivity, and we all get to shape the future in this rhetorical forum.
And you just thought you were web-surfing!
Alighieri, D. (2003). The Divine Comedy: The inferno, the purgatorio, the paradisio, translated by J. Ciardi. New York: New American Library.
Buckley, J.H.. (1974). Season of youth: The bildungsroman from Dickens to Golding. Cambridge: Harvard University Press.
Chaucer, G. (1982). The Canterbury Tales. New York: Bantam Books.
de Cervantes Saavedra, M. (1988). The Adventures of Don Quixote, translated by J.M. Cohen. London: Penguin Books.
Pirsig, R. M. (1984). Zen and the Art of Motorcycle Maintenance. New York: Bantam Books.