A New Year’s Resolution

NY

Happy 2015, everyone! Although it can be fun to celebrate the new year, I am not always super excited around this time of year. Here are a few reasons why…

  1. Christmas is over
  2. Football is almost over
  3. Tax season is coming
  4. I will write the wrong date on paperwork for the next 3 months

Anyhow, there are lots of exciting things about starting fresh, making positive changes, and all that jazz – which is what the beginning of a new year often gets us thinking about. Like most people, I’m typically centering these thoughts around my personal life but THIS year seems to be different.

Why? Well, it all started with watching the news. I happened to tune in during a story about a doctor in Naperville, IL. According to news sources, she was known nationally for treating individuals with autism. I believe I may have even known families who pursued this doctor, as her name sounded extremely familiar. The story was about how her license was placed on probation after allegedly providing “medically unwarranted treatment that may potentially result in permanent disabling injuries.” Sadly, this is a story that is told all too often.

What always makes my heart break the most is knowing that the families who fall victim to these scenarios truly want to help their children and are willing to do anything it takes to do just that. Although we typically think about those qualities as being good & honorable, they can also be especially dangerous given the number of providers in the autism community that feed off of them. In other words, there ARE doctors and other, typically well-respected professionals who are not in business to help, but to make money. It may take a lot of questions and research to identify them, but the worst thing you can do is make assumptions about the soundness of their recommendations before doing any research (or simply based on their credentials).

To get back to my original point, I knew after hearing this story that my resolutions were going to be less about personal achievements and more about helping families that I work with have the right perspective so that they can better advocate for their children. Although this is something that I always try to do, there is so much more that needs to be done. To start, I want to give you a couple of ideas to consider…

First, remember that all services providers (doctors, psychiatrists, behavior analysts, counselors, etc.) are HUMAN! Why is this important? Because being human means that we don’t always have the answer. It also means that there is some possibility that we haven’t done our research because we are lazy (but don’t like to admit it) or that we are simply “followers” and continue to do things because it’s what we were taught to do. Unfortunately, it also means that there is some possibility that all we begin to think about is what is going to get us the most clients and income for our own business or family – without considering what’s at stake for others. I can tell you from my own experiences that the nicest people can fall into all of these categories, which directly affects the soundness of their services. The outcome can be disastrous…

Second, consider what things would be like if there was a quick cure for autism that simply required a particular medical procedure. Wouldn’t the effects of this type of discovery be dramatic??? For one, you would know because other well-established therapies, such as ABA, would no longer be growing exponentially. Also, more than a handful of doctors would be providing it and more funding streams would be covering it. You may immediately think, “All types of therapy were ‘born’ at some point – what if this one turns out to be the best?” This is a good point; however, if there is little yet known about whether something is effective, there may also be little known about whether it is dangerous. Aren’t we just as responsible to protect our children from harm as we are to find them the resources they need? Furthermore, if we disregard/minimize proven treatments for those that may not be effective at all (or even dangerous), isn’t that also doing our children a disservice? Wouldn’t it be most beneficial to re-allocate resources if/when other treatments are actually proven effective?

I know this process can be unbelievably overwhelming for families, but checking your perspective is a great place to start. There is so much to learn about what questions to ask and what to look for when deciding on the type of treatments to pursue/continue. If you want more information on this topic, I’d encourage you to visit the Association for Science in Autism Treatment (http://www.asatonline.org/) – an organization whose primary goal is to educate people on evidence-based treatments for autism. Even if you are seeking treatment for other disabilities, you may still find resources on this site that will help you have the right perspective throughout your search.

I think I’m off to a good start to my new year’s resolution – now if only Auburn could win the 2015 national championship 🙂

~Liz

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Sensory Diets: What Are We Even Talking About?

Use of the term “sensory diet” or “sensory needs” has grown tremendously among professionals providing services to individuals diagnosed with autism. These days, it would be more surprising for a parent not to contact this idea than to contact it, both within and outside of the school setting. Families and schools spend crazy amounts of time and resources to ensure their children contact this type of therapy. In my experience, “sensory diet” and related phrases are one of the top 5 phrases used in IEP meetings, hands down. So, what do these terms even mean? Let’s first take a look behind the curtain of this infamous phrase to see how it got here. Although many people may not be aware of this, what we are really talking about when we say “sensory diets” or “sensory needs” is what’s called “sensory integration therapy” (SIT). Here is one source’s definition of SIT:

“Sensory integration involves providing a ‘diet’ of sensory stimulation to a child, in an attempt to improve the way in which the child’s brain processes and organizes sensory information. This can include vestibular and tactile stimulation, purposeful movements, use of weighted vests, and brushing, among other techniques.”

Sounds familiar (and experimental), right? Although most professionals using these strategies do not typically refer to them as sensory integration, the techniques and underlying theories would likely be described similarly as in the definition above. Put more simply, all of these terms imply that children with autism need some amount of various sensory experiences in order to function more normally from day-to-day. Now, at first glance, this seems to make a lot of sense. After all, many people with autism certainly love sensory activities – so it would be easy to assume that these are things they need from a biological standpoint. But are the acts of loving and needing synonymous? What if they aren’t? What if these sensory experiences are truly just preferences that are out of control because of a lack of social skills that help all of us keep our weird sensory habits (mine would be forcefully moving my feet under the table) in check? If we play devil’s advocate, this would mean that we are spending a TON of time, money, and energy on something that has nothing to do with progress or a better quality of life!

Now, take a deep breath. This next paragraph will likely blow you away and possibly even offend you. I simply ask that you finish reading with an open mind. I can also promise that you will still walk away with a positive outlook on the “S”-word if you’re able to make it to the end!

The bottom line is that nothing (to date) has proven that love=need when it comes to sensory experiences. I know it is easy to think that the underlying evidence supporting these ideas has been growing as exponentially as has use of the techniques themselves; however, this is completely false. Let me now present you with some factual information. According to the 2009 National Standards Project (NSP), a comprehensive literature review of research on many commonly used treatments for autism, sensory integration neither falls in the “established treatments” or the “emerging treatments” categories; instead, it was categorized as an “unestablished treatment” meaning that, “little or no evidence was found to assume its effectiveness.” More specifically, unestablished treatments may not have any research supporting them or the studies that were conducted have very low scientific merit scores; in the case of sensory integration, only seven total studies were found. These findings are comparable to other older sources such as, “Controversial Therapies for Developmental Disabilities” (2005). Based on an extensive review of the existing research at that time, the book echoes the NSP by noting that, “available studies [on sensory integration] are sparse and tend to be methodologically flawed.”

Despite multiple reviews with the same findings, the use of sensory integration techniques is widespread and typically incorporated into IEPs, treatment plans, and daily/weekly routines at home & school without question. As was my reaction upon learning this information, the common question is, “Why? If this is true, why are so many clinicians doing it?” Well, let’s remember the lesson we are always trying to teach our kids…that just because everyone is doing something, doesn’t mean it is good or right. I think this is one major example of us adults failing to practice what we preach.

Now for the positive note! We can easily see that people with autism seek and avoid certain sensory experiences in many different ways. Just because providing them as part of a “sensory diet” isn’t supported in a therapeutic sense, doesn’t mean that (a) these experiences can’t be used in meaningful ways and (b) people who love them can’t be taught to scale back on them based on social situations, just as we do. If we know these experiences are things that they love, can’t we simply use them for motivational purposes and/or to pair ourselves with fun stuff in the process!? In other words, there are a number of beneficial roles for preferred sensory experiences outside the theory of sensory integration that, therefore, don’t result in the sacrifice of precious time and resources on unproven therapeutic techniques.

I think we would all agree, as passionate clinicians and loving family members, on the importance of using time and resources as wisely as possible to help people live life to the fullest. To continue using any type of therapy with a lack of evidence simply does a major disservice for helping them reach this goal and at no fault of their own. My hope is for this entry to challenge all service providers and families, including myself, to continue seeking information on scientifically validated treatments so that our language, resources, and therapeutic strategies are as passionately driven by evidence-based practices as we say they are.

Precious lives are at stake…let’s know what we’re talking about!

Resources:

National Standards Project (2009) http://www.nationalautismcenter.org/about/national.php

Jacobson, J.W., Foxx, R. M., & Mulick, J.A. (2005). Controversial Therapies for Developmental Disabilities (pp. 68-70; 218; 252-253).

Liz Van Dorn (and yes, you did notice a trend of Auburn football colorsWAR EAGLE!)