Autism Review

Quality indicators are monitored when public monies are used, such as for Public Law 108-446, the Individuals with Disabilities Education Act (IDEA) 2004. The act mandates that states develop and submit a six year State Performance Plan (SPP) to the government. For each of the quality indicators that states report on there has to be improvement activities and targets. The idea of all this is to drive improved quality within the system

Quality indicator 7 for preschool services requires that a percent of preschool children with IEPs demonstrate improved positive social-emotional skills (including social relationships); acquisition and use of knowledge and skills (including early language/ communication and early literacy); and use of appropriate behaviors to meet their needs. Performance on this indicator is assessed using standardized tests after children have participated in their preschool program.

The SPP requires that exit assessments only need to be conducted for preschool children with disabilities when they stop receiving preschool special education services due to program completion or declassification during the school year in which the school district is required to report exit data on this indicator. Annually, NYS requires a representative sample of one sixth of the school districts in the State to report progress data on this indicator. When a district is not required to report exit assessment data it is common that the district DOES NOT APPROVE requests for exit assessments. Also, terminating availability of declassification services by allowing EVERY child to simply age out of the program also negates the procedural trigger for exit assessment.

The sum total result is that children complete their preschool services and unless the school happens to be mandated for data sampling in that given year there is a really good chance that there will be no exit assessments. When there are no exit assessments that means that the CSE has no hard data to consider - and eligibility for that system is constricted. Also, parents are left in the dark not knowing the actual status of their child's progress as measured by full assessment.

Basic standards of practice would dictate that a therapist would want to have some kind of reasonable assessment data to make determinations about progress made, recommendations for future eligibility, and for feedback to families. Basic standards of practice are compromised by these policies.

School districts blatantly disregard basic standards of practice in favor of ONLY following the bare reporting requirements of the State Performance Plan. In the mail today I received a notice that read as follows:

The above mentioned memo advised you to request full evaluations for students you are considering for declassification. However, because we are not reporting on State Indicator 7 this year, you do not need to request a full evaluation for students you are declassifying.

What happens on the street is that very few children are referred directly to CSE - unless it is VERY obvious that they would have eligibility due to notable diagnosis (cerebral palsy, autism, etc.). In truth, very few children have such severe diagnoses and most kids who receive special education services have 'softer' developmental delays like learning disabilities, attention deficit disorder, or other problems that are often relatively less severe. This causes most children to 'age out' of special education, never receive a full exit assessment (unless the state happens to be looking for data that year!), and they are not again picked up on the elementary school side until they are failing in first or second grade.

I can't comment on the heart of the people who write memos indicating that there shouldn't be exit assessments since the state isn't looking. However, I can state that it is odd to dictate your practice based only on the likelihood of whether or not someone is watching your conduct at any given time.

One would hope for a more universal standard of 'appropriate practice.' In my opinion, any preschool child who has been receiving services should receive periodic reassessments to measure progress, particularly if they are at the terminal point of their preschool participation.

How can we recommend declassification services, and even if they were approved - how can anyone know what still needs to be worked on unless we have good assessment going on?

How did we get to this point? There are groups lobbying for even less oversight of the 'declassification' process for preschoolers. Professionals working in school systems need to understand that pressures for 'reform' are driven primarily by municipalities and counties who don't have the funds to support programs any longer and also by special interest groups representing school business officials who struggle with the challenge of meeting standards with a shrinking resource pool. When you hear the words 'mandate relief' you have to understand that this has absolutely NOTHING to do with what is professionally/educationally appropriate but it has EVERYTHING to do with what districts can afford.

I never thought that outcome assessment could be considered a radical request - apparently it is if the State isn't looking for data that year. But here we are.

I received an email today from an agency that provides three hour training courses on autism required by the NY State Office of Teaching Initiatives (OTI) for all candidates seeking a Special Education Classroom Teaching certificate. The three hour course is popular because it is frequently used by CSEs as a training mechanism for educational staff who are working with children who have an autism spectrum diagnosis.

I think the intent here is good - many professionals and paraprofessionals who work in special education may not have a lot of information about specific conditions and presumably anything that provides some information might be helpful.

Parents who come to my office often verbalize frustration that the aides or classroom staff in schools are not adequately prepared to understand their children's needs. I assume that this dissatisfaction is what drives families to private practitioners in some cases.

I have an interest in certification so I got to wondering what this certificate actually provided or promoted. If it was effective, why do so many parents still talk about how the schools are not properly educated about autism? These seem to be legitimate questions.

I tried to find out more about the autism certificate course and quickly ran into dead ends. I scanned the OTI website and couldn't find any information about outcome assessments of this educational requirement. I looked for information about how the curriculum was developed and that wasn't available either. I called a local colleague who teaches the course and that person was not aware of any outcome or effectiveness studies that have been done. I tried to call OTI but ended up in a circular pattern of button pushing. According to the phone recordings, most OTI staff are dedicated to reviewing applications and not dedicated to answering the phones.

So I am left wondering: is that autism training certificate program effective in any way? If there are studies done on the effectiveness of the requirement where are they? I can rather easily find reams of data on three hour defensive driving courses (interestingly, they are absolutely ineffective) but I can't find any data on effectiveness of three hour autism courses.

I was twittering with another colleague today about the Touch television program that assigns prophetic powers to a child who may have autism. My concern is that the many hours that this show will be aired will fill people's heads with all kinds of ideas regarding the abilities of people who have autism. I know - it is just fiction - but not all minds are discerning. Will the three hour course overcome the powerful and entertaining but incorrect messages contained in a slickly produced television drama?

Or will this television show have a deeper influence on the development and perpetuity of an unhelpful cultural archetype that reinforces the 'autism as special power' myth. In recent years we have had 'Rain Man' and the 'Curious Incident' book and 'The Boy who Could Fly' and many others.

Does the myth matter? I am not sure. It would be nice to know if these three hour training courses met any real need though, or if we need to do something better.

Another significant theme in my 2011 forum conversations was pushing back against fad OT interventions. I think that it is an important enough topic to be re-posted here.

Some of the fad and pseudoscientific interventions that I discussed in forums this year included therapeutic listening and other auditory interventions, deep pressure protocols (brushing programs), weighted vests, and Brain Gym.

Fad interventions were relatively common in health care until research came along - and now we have mechanisms to test and see if people's 'ideas' about something hold up to any scrutiny.

One posting asked about the validity of 'astronaut training' which is something that I get phone calls about in my private practice. I tried running database searches on 'astronaut training' and 'vestibular-visual protocol' and several other iterations that I hoped would capture this protocol and as usual for this kind of fad intervention I was unable to find any research.

I have practiced OT for 24 years. I can tell you that a lot of families contact me and ask me about whether or not I will provide Astronaut Training for their child. I tell them that it is experimental and that there has not been any research to support the specific protocol that they usually found out about through web sites or youtube. I am not going to link to those Internet sources because I don't see the value in spreading information about fad interventions. I would rather that people search the terms and come to the blog and see an opinion about pseudoscience.

Over the course of the last 20 years there have been several fad interventions in pediatric OT. These interventions are generally pseudo scientific in that they reference scientific-sounding concepts, they are promoted by "experts," they require "clinical training programs" that people need to attend so they understand how to do the protocol properly, and they have a "feel-good" quality to them that engenders hope in parents. In the end, they also have an absolute lack of supporting research.

An classic example of a fad or pseudoscientific intervention in OT is the so-called 'Deep pressure protocol.' I remember attending a conference in 1989 (22 years ago now!) and at that time the presenters were promising that there was exciting research available that would support their protocol. That research never materialized and now you can't even find a reference to that protocol in OT pediatric text books. Pseudoscientific interventions are tough to beat back into the bushes though - and even though we have 20 years of no evidence and no current references in major OT textbooks it still remains an entrenched part of what I call 'mythological' OT practice.

Pseudoscientific interventions are so resilient because they may in part have some concepts that are valid. For example, there may be something valid about how some deep pressure stimulation is calming to some people in some situations. Similarly, there may be something valid about trial practice and training for postural responses and visual-auditory orienting - but neither of these should be construed as meaning that you have to use the Fad Intervention therapy brush or you have to purchase the Fad Intervention CDs and you have to do the Fad Intervention protocol exactly the way the Fad Intervention Therapy pushers proselytize. Most importantly, you have to ask if you should be providing the Fad Intervention Therapy to a child and family unless you tell them that it is experimental and there is no supporting research.

It is probably much more important to look for supporting research, make ethical judgement about how you have to inform families about experimental procedures, and don't fall into the trap of perpetuating 'mythological' occupational therapy practice.

With persistence and continued conversation I am confident that we can advance the sophistication of how we bring ideas to a research forum without first setting our ideas loose into the marketplace where people are profiteering off of the hopes of parents and the lack of evidence-based proclivities by some forces within our own profession.

Please reference an entry earlier this year about seat cushions.

I am essentially re-posting that earlier entry but replacing 'seat cushions' with 'weighted vests.' Let me start this post with congratulations for Amy Collins and Rosalind J. Dworkin who wrote an excellent article in this month's American Journal of Occupational Therapy.

Here comes some mildly edited cutting and pasting from the previous entry - and I will take the liberty of copying my own writing because the issue is identical and this entry will likely be searched separately than the seat cushion entry!

I encourage everyone to open up the current American Journal of Occupational Therapy and read 'Pilot Study of the Effectiveness of Weighted Vests.' This is a fantastic article that looks at the issue of whether or not weighted vests were effective at promoting attending behavior.

I think this is a fantastic study because it take a very common OT intervention and puts it to the test. For many years OTs have been dispensing weighted vests to children in classrooms based on the thought that the vests provided calming/organizing sensory stimulation that would promote attention . This has been done for so many years in so many settings that it becomes a common request from teachers who don't know what to do with children who have attending difficulties. How many OTs hear the request "Can we try to see if a weighted vest will help?"

We have precious little evidence that weighted vests do anything at all for children - and the lack of evidence is reflected in the fact that this intervention is barely mentioned in some common pediatric occupational therapy texts. However, given the formulaic and mythical popularity of the intervention you might think there would be more supporting research!! Now we have a series of recently published articles that when considered in total indicate very little evidence for using weighted vests.

For additional background reading please also reference Hodgetts, Magill-Evans, & Misiaszek (2011); Leew, Stein, & Gibbard (2010); and Stephenson & Carter (2009).

In the AJOT study the authors Collins and Dworkin used an intervention and control group in a blinded and randomly assigned design to measure the impact of wearing a weighted vest on attending behaviors. They used a clever model of removing the weights from the vests in the control group and inserting insignificantly weighted Styrofoam that replicated the appearance of the weighted vests for the data collectors.

The authors were unable to find evidence that weighted vests had any effectiveness for improving attending behaviors. The study was limited because of small sample size and a need for ensuring consistency in coding/recording methods. These limitations are significant enough to warrant the label of 'pilot study.'

The findings of this pilot study are consistent with previous studies and although there are some limitations in the research design there are some other strengths of the study and its confirmation of previous studies is compelling.

My analysis of this is that we should probably make attempts to confirm this with a more tightly controlled design and a larger sample, but based on these results and the consistency of these results with previous studies there is very little support for using weighted vests with the expressed purpose of trying to improve attending behaviors.


References:

Collins, A. & Dworkin, R.J. (2011). Pilot Study of the Effectiveness of Weighted Vests. American Journal of Occupational Therapy, 65(6), 688-694.

Hodgetts, S., Magill-Evans, J., & Misiaszek, J. (2011). Weighted vests, stereotyped behaviors and arousal in children with autism. Journal Of Autism And Developmental Disorders, 41(6), 805-814.

Leew, S., Stein, N., & Gibbard, W. (2010). Weighted vests' effect on social attention for toddlers with Autism Spectrum Disorders. Canadian Journal Of Occupational Therapy. Revue Canadienne D'ergothérapie, 77(2), 113-124.

Stephenson, J., & Carter, M. (2009). The use of weighted vests with children with autism spectrum disorders and other disabilities. Journal Of Autism And Developmental Disorders, 39(1), 105-114.

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?

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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.

I received an interesting mass emailing from Autism Speaks today, which is an advocacy group that is currently supporting passage of the autism insurance bill in NY State. I paused because the email contained the following:

"Please stay tuned over the coming hours. The health plans are still working hard to ensure a veto. We need to work together to let the Governor know that we expect him to provide principled leadership and sign S.7000B into law this week."

I found this a little confusing because every other autism advocacy group that I know of in NY is opposing this bill, as are the NYS OT Association and the NYS Speech and Language Therapy Association. The concerns are that no other conditions require such a high standard for 'evidence based practice' as this bill and that this may be used to actually decrease what insurance companies have to reimburse. I don't know anyone that is against the concept of evidence based interventions, but it would be unfair to apply a standard like this to the autism diagnosis when we don't have that same criteria for other conditions.

The reality is that we are still developing evidence, and although insurance companies should not have to reimburse for quackery - they also don't need to hold the autism diagnosis to a higher standard for reimbursement than any other condition.

For background reading on why this bill is being opposed you can read this article that actually reports on who authored the bill - and the allegation is that this was actually written by a health insurance lobbyist!

So which is true?

Did a health insurance lobbyist author this bill? Why is Autism Speaks stating that "The health plans are still working hard to ensure a veto." ??? I am not aware of health insurance companies lobbying for a veto - but I am very aware of a lot of angry parents and health care professionals who are opposed to the bill.

I thought I would clear this up by contacting Judith Ursitti, the Regional Director of State Advocacy Relations for the Autism Speaks organization. She wrote the email that claims insurance companies are lobbying against the bill. I wanted to ask her why so many other autism advocacy groups are opposing the bill and why NYS OT and Speech Associations are opposing the bill. The people at Autism Speaks didn't have any answers for me but they gave me a contact number for Judith Ursitti that goes straight to voice mail. I left a message asking her to contact me. I have not heard from her yet.

I have no doubt that there are many fine people going to the Autism Speaks walks and doing all they can to promote autism awareness and to lobby for their interests. I don't know that people are fully informed of the controversy surrounding this bill. This is a little confusing, and since I can't seem to get an answer from Autism Speaks it sure will be tough to support this bill.

So which do you think is true? Did an insurance lobbyist write this bill?

Or are the insurance companies lobbying against it being signed into law??

It is indeed a sad day that legislation that should be having a positive impact for families dealing with autism is instead embroiled in such contradiction and controversy.


UPDATE:

I received a response from Judith Ursitti via email and will post her comments in full:

Thanks for posting information about efforts to pass autism insurance reform on your blog. I apologize for not promptly returning your call. It’s been a bit of a crazy Monday. J

Here are some FAQ’s that I hope will be helpful. http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/NY%20S7000B%20FAQ%20Final.pdf I think they cover all of the questions you had.

In addition, my colleague Lorri Unumb also wrote a really nice blog piece discussing some of the questions and misinformation that has circulated about S.7000B:

http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=8447191

And just to be clear, S.7000B was written by a woman by the name of Kate Powers who is a legislative assistant for Senator Neil Breslin. You may know her? It was not written by lobbyists or anyone who works for a health plan.

Finally, here is an Op Ed written by Paul F. Macielak, President & CEO, New York Health Plan Association in opposition:

http://www.timesunion.com/default/article/Autism-proposal-doesn-t-deliver-635248.php.

I know we are all working to make sure that New York families have access to the healthcare they need for their loved ones with autism spectrum disorder. Please let me know if you have additional questions. I’m happy to help.

Judith Ursitti

Regional Director State Advocacy Relations

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I appreciate the response, but I am not sure if it really addresses the issue of why Autism Speaks finds itself standing alone in supporting this legislation. There is a lot of discussion about the evidence-based issue and as I said I don't think that most people are looking for reimbursement of sham interventions. The language of the current bill leaves insurance companies with plenty of room for exclusions. The fact remains that insurance companies do not have the same latitude for denying interventions that are commonly provided for other disorders; this bill holds autism interventions to a higher standard and that is blatant discrimination. The alleged purpose of the bill is to facilitate insurance coverage - and I just can't see how that will happen.

Also, the simple inclusion of 'medically necessary' language is a huge barrier: is it MEDICALLY necessary to intervene with a 'behavioral' problem? Language re: medical necessity is used by CMS to decline coverage for all kinds of issues - from personal care to hygiene to emotional and behavioral difficulties. Will a child with behavioral difficulties rise to the level of 'medical necessity?' I doubt it - most insurance companies already try to deny autism interventions because they are 'educational and behavioral' as opposed to 'medical.' That means that no one is MEDICALLY COMPROMISED by some child's autism - so there is no need for HEALTH INSURANCE if it is not a MEDICAL problem. I can see this coming from a mile away - I do not know why this kind of language would ever be allowed in the bill.

As for the opposition from the New York Health Plan Association, all I can find is a brief letter to the editor in an Albany newspaper - and the primary opposition is because they state that the bill will not cover what it states it is going to cover. NYHPA states that approaching the issue from mandates on those plans that can be regulated does not mean it will reach the majority of people. I went to the NYHPA website and they didn't have anything about the autism bill listed on their site. Seems it is not such a hot issue from their perspective - and again it makes me wonder why the email says "The health plans are still working hard to ensure a veto." I don't see evidence of this if all that is produced is one little letter to the editor written two months ago. This kind of overstatement leads to a real credibility issue for me.

It seems to me that the primary opposition is from professionals and parents who don't trust the wording in the current bill. I believe it is rather naive to craft a bill that lacks specificity and then expect that the regulatory power-in-charge will actually take this as an opportunity to serve the community. Perhaps Autism Speaks needs to reflect on everyone's experience in dealing with OMIG and OHIP recently to get a little perspective on the lengths taken by NYS bureaucrats to limit reimbursement for services.

Lastly, I don't know what to say about the authorship of the bill - the conflicting accounts speak for themselves. The bottom line is that IF this is signed into law, we will all wait to see what the actual impact is going to be. I object to this kind of legislation where 'the devil is in the details' that don't really become apparent until some regulatory body writes the rules for how the law will be enacted.

This is all highly reminiscent of being told 'You will like it once you see what is in it!' I am not impressed.

We can achieve fair and sensible insurance coverage and address reasonable concerns about evidence-based interventions. I am not that interested in seeing dice rolled about over the fates of children who have disabling conditions. I suspect that this can be done in a much better way.

This bill fails to deliver confidence and credibility - and when one is measuring degrees of failure that is a rather large measure to fail. Tragically, it might actually fail to deliver services too - which will be at the whimsy of however the regs are written. In this economic climate I don't hold out much hope that this will offer any real relief for families. I guess we will find out.

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?

Many states are struggling to develop budgets and are under severe pressures from seemingly endless mandates from many different sources. Some mandates come from federal laws and others come from contractual obligations and still others come from the constituents themselves. Locally, the end result of this is seen in a NY state budget process that has gone from the original inanity of 'three men in a room' backroom dealing to 'one man making dictatorial emergency extensions.' At this point the populace has been so effectively removed from the budgetary process that I am not even sure they realize yet that lobbying in all of its forms (direct and proxy) is functionally dead. I find it amusing that at least the New York 'three men in a room' process could be lobbied - who would have thought that system could be degraded into something worse??

Inappropriate and ineffective decisions are more likely to be made when the populace is removed from the process of participation. The strength of participatory and representative democratic action is that it allows information and opinion to be fed into the decision making process. I understand that there are potentials for abuse and misuse in this system - and it is important to address those problems - but we don't strengthen our policy development by removing public input and leaving important decisions buried deep within emergency budget extension bills.

I don't mean for this to become a political rant - I want people to understand how this has a direct impact on people's lives. I am thinking about early childhood education in particular this morning and how this applies.

California's budget woes are perhaps more widely publicized than New York's budget woes, but I believe that is because California has not been as successful as NY in developing a workaround to political log-jamming and legislative paralysis. I recall reading a recent California proposal that would increase the entrance age for kindergarten to five years of age. The appeal of this is that it effectively saves the state millions of dollars by delaying entrance into the system - and although it is a short term solution it is an appealing money saving trick because it is easier to cost shift onto the general populace than it is to confront the state pension system or teacher unions, for example.

The justification used for these policy decisions often comes out of think-tanks. Sometimes think-tank work is really sound and helpful; other times it is judgmental and politicized and of dubious quality. The justification cited for the California proposal is a Rand study completed a few years ago that states that delaying kindergarten results in higher math and reading scores. What the study doesn't explain as well is things like:

• Standard error of measurement on tests, particularly for that age group
• The tests used are often developmental, meaning that it is expected that a five year old will likely have better 'readiness' and subsequent academic progress than a four year old.
• These tests tend to have poor predictive validity for children who have difficulties
• School readiness factors are complex and interact with a multitude of influences that are not fully considered or discussed in this study.
  

In sum, poorly applied science can lead to bad policy - but people's eyes glaze over if you try to engage them in conversations about standard error of measurement and predictive validity. When there is money to be saved it is difficult for a politician to want to hear a debate about these technical details.

To make matters worse, there is the natural lazy tendency that fosters the thought that 'if State X is doing it then they must have really looked at it and studied the issue so it might be a good idea for State Y.' There is no more insidious spread of poor decisions than that caused by lazy politicians who are simply following the herd. This brings me full circle to the original point - we are shut out of decision making and there is limited opportunity to provide input.

So when I see information from think-tanks being 'passed around' and I see the flawed decision making process flow from California toward New York, and as I see limited opportunity to counter incorrect information I just get a little nervous. Some days it feels like we are struggling to climb and reach for an objective and there are a multitude of forces (some inadvertent and others purposeful) that are greasing the mountainside.

We have a lot to fix with our process. I encourage occupational therapists and other professionals to become more educated and more engaged so that better information can be considered and better decisions can be made. It is not acceptable to just let decisions be made without public input and democratic participation. We all need to do more to make sure our voices are heard and that there is appropriate conversations about forming policy.

Background reading:

Kindergarten readiness bill passes State Senate. Retrieved June 28, 2010 from http://www.senatorsimitian.com/entry/kindergarten_readiness_bill_passes_state_senate/

Datar, A. (2003). The Impact of Changes in Kindergarten Entrance Age Policies on Children’s Academic Achievement and the Child Care Needs of Families. Retrieved June 28, 2010 from http://www.rand.org/pubs/rgs_dissertations/2005/RGSD177.pdf

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.

The value of anecdote is not in capturing a comprehensive analysis of a system's problems - but rather in making an example of a small issue that reflects a broader pattern. I understand that use of anecdote as a tool can also be fundamentally incorrect or even dangerous but I hope that I have documented enough other information about the early intervention program (in places like here and here) so that this presentation will be honest and fair.

I also understand that any 'for the children' rhetoric causes large swaths of people to immediately tune out of a conversation but it is difficult to frame this discussion about early intervention services outside the context of how it actually impacts children and families. The truth is that the future is a little uncertain about early intervention services in New York State.

Today's anecdotal evidence comes from this situation: one of my therapists had to write a progress report for a child who is enrolled in the early intervention program. Before submitting the report I reviewed it and found it to be satisfactory. I saw the statistical notations in the report and internally cringed - but we are mandated by the State to use certain guidelines for determining eligibility. I accept this; I need to function within the system even though I don't always agree with the way that the system is set up.

Anyway, through absolutely no fault of the person receiving the report, it was noted that a word was omitted on the paperwork. Now I don't imagine that this person has some particular investment in such technicalities of diction, but it is the person's job to make sure that things are done the way that they are supposed to get done. So, the report was sent back to us with the friendly request to include the missing phrase.

The error was that it was not adequate to state "Thirty minute session." Instead, the correct diction needed to be "Thirty minute basic session."

Now before anyone begins to worry that perhaps the word "basic" has some particularly discriminating function in this context - let me make you an assurance: in early intervention terms in NY State, a "basic" session MEANS THE SAME THING as a "30 minute" session.

Making such a change is really not that big a deal - and as I said I really am not impugning the worker who sent the report back to us for editing because after all they are doing their job and actually doing a rather good job to notice the error.

The problem is that there are things that could have been criticized in the report - most notably the statistical eligibility criteria. The worker might also have noted that in this particular situation there were complex family factors that might merit team discussion or planning. None of that happened though - and instead the concerns were reduced to having to make edits to satisfy the inexplicably tautological documentation rules.

Now I know better than to enter into a conversation with the worker about how inane the situation is - because after all I really do respect them and as I said they do a fine job - and they are also doing what they are supposed to do!

But what if someone suddenly stood up in the room and asked the question: "Are you all focusing on the best things so we can improve this system?"

The system is enormous and complex and rather uncaring of single voices most of the time - and as with all bureaucracy I think that is how it sometimes gets reduced to inanity. We all have a chance to give our input though. There is some new rulemaking being proposed for the Early Intervention program and there is an opportunity to provide feedback.

The issues are big and there are so many to choose from. You might go and ask that the program only employ practitioners who pass national certification examinations. You might go and lobby about consistent entry and exit criteria for the program. You might go and express some concern about parent co-pays and ensure that we only ask for contributions from people who really have the resources to contribute. There is a lot to be concerned about - and maybe if enough people go we can get to substantive issues.

I'll be at a public hearing. Maybe I'll see you there too?

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.

I received an email from Michele Karnes who wrote the following in the interest of advancing the debate on recent postings and comments regarding interventions that I consider quackery. Michele writes:

This offers a different view in response to your continuing competency column, OT's should be made aware of treatments that are offered to clients/patients, whether it is traditional or non-traditional, a long existing treatment or new one. This enables our OT profession and professionals to better educate the people they treat and interact with.

Instead of taking anyone's word that a particular treatment is 'mysticism' (as you put it) or the best thing since sliced bread, the OT who attends a 2-3 hour session can be introduced to the history and theory, what the treatment or program consists of, indications/contraindications, etc.

In response to Quantum Touch, it is based on the chi concept much like Tai Chi but focuses on therapeutic touch, a long standing principle used in OT. From the Quantum Touch website: “In principal the Quantum-Touch practitioner learns to focus and amplify life-force energy ("Chi" or "Prana") by combining various breathing and body awareness exercises” (I fail to see the problem with this). Additionally, “Over the past eight years, …have taught QT to well over 4000 people. Without exception, professional practitioners of the various modalities have told me that this work can be seamlessly combined with what they know, and in most cases it has transformed their practice. This list includes chiropractors, osteopaths, physical therapists, acupuncturists, cranial sacral therapists, chi gung instructors, and reiki masters, to name but a few”.

Notice the absence of OT, whether we buy into it or not is our own personal preference, however when talking to another health professional, it seems you would rather OT be clueless about what it is, who does it and what the theories behind it are. Tai chi has only become more evidence based recently and early practitioners were pooh-poohed!

Your comment "Undoubtedly, continuing education organizers and providers reap reasonable financial dividends through their offerings" couldn't be further from the truth, if fact one of the reasons this company was formed was to provide accessible, affordable, quality continuing education to our local health providers. The fees are low, food is often provided as well as current information offered by quality speakers who have vast experience in the content area. While Evidence Based Practice is on all of our minds, and ultimately the best to utilize with our patients, if we only used treatments for all of these years we would have missed out on the many treatments that OT’s have historically (and still) use.

Additionally, IACET is the gold standard of continuing education, AOTA CEUs have fewer standards and the standards they have are in line with IACET. IACET enables OT/PT/ST/Athletic trainers and others to learn in an interdisciplinary manner which is highly encouraged by the Institute of Medicine in “Crossing the Quality Chasm: A New Health System for the 21st Century”.

I would also like to urge those that question a practice or program to at least attend an event and look for yourself, much like the therapists who have found this to be a valuable resource!

Thanks for having an open mind!

Michele Karnes

I still believe that Quantum Touch has absolutely no value and should never be accepted as continuing education for occupational therapists. In my opinion it has absolutely nothing to do with the occupational therapy scope of practice as defined by our state law and I believe you would be hard-pressed to find an ACOTE standard that demands the inclusion of this intervention into any curriculum.

If Quantum Touch was only about "breathing and body awareness exercises" than I might not object - but in fact the Quantum Touch website makes claims that this technique can cause remissions of breast and liver cancer, cure scoliosis and other orthopedic misalignments, reduce deformities from rheumatoid arthritis and eliminate panic attacks, reshape bunions and heal deformed or broken bones... the list goes on. It can also apparently be done through 'telephone healing' and even children can do it. It also prevents flowers from wilting and can cause people to smile broadly. All these claims are made on the website at http://www.quantumtouch.com/index.php?option=com_content&%20%20;view=article&id=3&Itemid=58. This does not constitute responsible occupational therapy practice in my opinion.

So actually I don't believe that professionals should be "clueless." People can go read the New York State law governing occupational therapy practice, they can read the ACOTE standards, and then they can read the outrageous claims on the Quantum Touch website. Then they can go read the evidence:

As you are undoubtedly aware, this is not my opinion alone. There are many studies that completely discredit energy healing and it is not accepted by the medical community at large. In fact, if I were to attempt to use a form of energy healing in my practice for a patient who had an acute hand injury I would not improve the patient's condition, the doctor would never refer to occupational therapy again, and I would open myself up to a significant lawsuit for professional malpractice. The premise that this is somehow an acceptable intervention and something that we should be educating occupational therapists on is almost beyond my comprehension.

Michele states that Quantum Touch is based on the concept of Therapeutic Touch. Perhaps the most famous evidence that we have to date that undoubtedly proves that this is a sham is from the article published in JAMA on the inspiration of the 11 year old's fourth grade science fair project - where people who were energy healers only identified an 'energy field' 44% of the time - less than by chance! So much for Therapeutic Touch.

Just because people seek out alternative energy healing interventions doesn't mean that it constitutes appropriate or ethical practice. In an article published in the Journal of the American Medical Association on this topic an author writes: "Given the extensive use of CAM services and the relative paucity of data concerning safety, patients may be putting themselves at risk by their use of these treatments. Only fully competent and licensed practitioners can help patients avoid such inappropriate use... Physicians can also ensure that patients do not abandon effective care and alert them to signs of possible fraud or danger."

When I was much younger and less skilled in researching evidence I went to a course because I wanted to 'see for myself' what it was about. The course was on pediatric myofascial release - and there is no shortage of controversy on whether or not this is a sham intervention. In the course they wanted us to "feel" craniosacral rhythm - and the "instructional technique" was to have us place one hand on our partner's sacrum and the other on their occiput while they were lying supine. Then they dimmed the lights, played background music with the sound of ocean waves crashing on the shore, and the course instructors walked to each set of participants and placed their hands on top of the 'therapist's hands' using alternating gentle pressure and stating "Can't you feel that?" What a joke. Since that time I have learned that I don't always need to go to a course to find out for myself - because the courses invariably have more to do with suggestion and indoctrination and very little to do with real science.

Over time I have come to understand that I don't need to step into a cowpie just because I want to experience it for myself. Sometimes the smell of it from a distance is enough for me. But I am just a street level practitioner with a computer and an opinion. People can decide for themselves.

References:

Jonas W. (1998) Alternative medicine and the conventional practitioner. JAMA, 279, 708-709.

Rosa L, Rosa E, Sarner L, Barrett S. (1998). A close look at Therapeutic Touch. JAMA, 279:1005-1010.

I received a response from WFOT regarding an email I sent them about a banner ad on their website. Here is their response:

From: World Federation of Occupational Therapists [mailto:admin@wfot.org.au]
Sent: 03 May 2008 17:25
To: 'chris@abctherapeutics.com'
Cc: Marilyn Pattison
Subject: WFOT: For Info: banner ads on WFOT website


Dear Dr. Alterio

Many thanks for your letter and the concerns you raise.

I would like to draw to your attention to the following statement on the WFOT website:

Placement of advertising either on the WFOT website or in the Bulletin does not imply any endorsement of the advertised products and / or services by the World Federation of Occupational Therapists.

Based on this I would suggest your criticism of WFOT is somewhat unjustified and your disappointment misplaced. WFOT is staffed by volunteers and the organisation depends upon donations, individual membership and revenue from products and advertising to fund its international activities. The placement of a banner ad serves as a sponsored link to another site so it is, I assume, the content of the other site that you object to. If this is the case then I would suggest you take it up with Schoodles directly.

I would also draw your attention to the fact that the WFOT site also has a tabbed link (non sponsored) to OT Evidence.

Please let me know if you require further clarification.

Kind regards

Marilyn Pattison
Registered Occupational Therapist
Dip.C.O.T.(UK), B.App.Sc.(OT), MBA

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

I responded to their response:

Dear Marilyn,

Thanks for your response.

I am aware of the WFOT statement about not endorsing advertisors - but I still fail to understand why WFOT would accept advertisements from a company that sells a product that some occupational therapy professionals might object to.

There are always a diversity of opinions on any given topic - and then a corresponding opportunity for dialogue. I believe that a discussion about evidence-based practice is legitimate and comment or opinion about products that might not meet those standards that many occupational therapists embrace is not misplaced.

In fact, the presence of the WFOT section on evidence based practice is what caused me to voice my concerns. It is difficult to understand why WFOT would promote evidence based practice on one hand and take advertising money for that product with the other hand.

Anyway, that is just my opinion. WFOT is your organization and you all are certainly very free to do whatever you want. I just wanted to share my opinion.

Regards,

Christopher J. Alterio, Dr.OT, OTR