Autism Review

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.

I read an article the other day that gave a lot of statistics about how teenagers who have autism spectrum disorders receive significantly less case management services, therapy, and medical care after they leave high school. That does not surprise me. Then earlier today a colleague was asking about interpretive phenomenology. That made me think I should write down this story. It gives a different perspective on the problem that moves a little beyond the statistics in the article referenced below.

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Cindy's mom called the other day, and I was pretty certain she was calling about concerns with her young preschooler - who is 4 years old and has PDD-NOS. I evaluated Cindy about a year ago and helped the family engage their local school system for services.

Instead she was calling about Emily - and I recalled that she told me about an older daughter who also has an autism spectrum diagnosis. Her older daughter graduated from high school last year and now was not getting any services and was not enrolled in any programs. The mom wanted to know if I could help.

Emily is an eighteen year old young woman who walked into the office on impossibly high heels, chewing gum, and grinning broadly because she only has the cares of a teenager. She was using IPod ear buds which her mom had to ask her to remove, "You know it is rude to have those things in when you are meeting people!" her mom chastised. She seemed like a very typical teenager, but perhaps just less emotionally and socially sophisticated.

Emily recently graduated from high school after a very long and not always successful academic career. Her curriculum was modified so she did not receive a Regents diploma - and she reportedly was not eligible for participation in any post-secondary education unless she took and passed a GED examination. "I was just tired of school," she explained. "I just thought it would be good to take a break." She never participated in any pre-vocational programs and never had a job. She is able to read on a third grade level and can complete simple math problems. She has a lot of orthopedic problems with her feet and knees from years of toe walking. "The high heels were her idea," explained her mom. "She figured that if she wore heels that people would stop asking her why she walked on her toes." It wasn't a bad idea on its surface, actually, but years of toe walking were causing abnormal biomechanical stresses and severe deformities in her feet.

The plan to stay home and take a break sounded relatively reasonable to me - but I also know that a stay-at-home teenager wears thin on parents pretty quickly. It took around 3 months for the family to figure out that talking a break might not really be the best idea.

The problem that they now faced though was that there was no interface into any care systems. The school system was all too happy to wash its hands of the 'problem' of having to develop a transition plan. The family wanted a break and did not want a referral to any programs. That meant less work for the school - and they were very quick to oblige.

I understand that the family has a right to decline services, but it is unfortunate that there was not a better safety net in place that ensures some degree of continuity of care. The problem with this approach taken by the school is that it is just kicking a can down the road. When the time comes for referrals to be made there are no guide rails on the road for this family. There are no systems in place. There is just Emily, who has never taken initiative because the system does not encourage it, suddenly adrift in a very big world.

Emily spends her days listening to music, watching television, and accompanying her mother on errands. She doesn't have any friends. She has a thought to be a fashion designer someday. I'm not so sure how that can happen.

In addition to the foot deformities Emily has severe knee, hip, and back pain. "There isn't much that relieves the pain, except rocking on my back." With a quick "Do you mind??" and without waiting for any answer she lowered herself onto the floor, re-inserted the ear buds, extended her spine into an opisthotonic position and began rhythmically rocking back and forth in her own world as the music blared in her ears.

Emily did not seem to notice or perhaps care that other people in the clinic were watching.

The parent continued talking without pause as Emily remained on her back, rocking back and forth on the floor of my clinic. She was worried for Emily's future, worried about Emily's leg and back pain, and worried about whether they made the right choices as she was leaving high school.

As I listened intently to the parent and observed the confused reaction of people watching Emily I wondered where to possibly take the first movement toward a solution. It is my job to help solve these problems.

Emily rocked and rocked.



Reference:

JAMA and Archives Journals (2011, February 7). Relatively few young adults with autism spectrum disorders receive assistance after high school. ScienceDaily. Retrieved February 14, 2011, from http://www.sciencedaily.com­ /releases/2011/02/110207165506.htm

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.

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.