A Teaching Aside
Note: As is clear to anyone that has been reading my blog for any time, I am not a fan of medication as a treatment for autism. I do not think it works and I think is widely overused as a first, rather than a last recourse. However, this post gives a relatively clear view of how I think we should proceed with medications used to control or modify problematical behaviors in children.
Since my brother died I have been observing the behavioral phenotype of autistic children a lot closer than I ever had before and have been pondering on a trend I see when there are kids that are inconsistent with taking their medications. I see just how medication is almost universally being used improperly as the primary therapeutic approach in the United States. What I mean by this is that, as I mentioned in an earlier post, I always note the side effects of medications given to kids I work with and I worry that it often interferes with their education. However, I am noticing another trend that troubles me. One that appears when the kids discontinue or “forget” to take their meds on a given morning. Sometimes I see a delightful child that seems to have a weight lifted off their shoulders. These are the kids I feel are improperly medicated. Those are not the kids I am addressing in this post.
In this post I am addressing a second trend I see, the one when skipping a dose brings to light the very issues that led the child to be medicated in the first place. I see autistic kids become a slave to their impulsivity or violent outbursts when they are not taking their pills. I see them fall into obsessions and compulsive behaviors that cannot be redirected easily. To be blunt, I watch these kids suffer.
In short, I see families forgo behavioral therapy and actively working on any challenging behaviors shown by their child the instant a drug seems to erase that problem. And then not understand just why these behaviors are exacerbated when a dose is missed or the medication is discontinued.
Medication as an adjuvant therapy
I worry about these things because medication should be given as a supplement to the primary, behavioral methods of dealing with behavior, not as the primary course of action. When I see a kid that appears relatively normal (notwithstanding the side effects) when they are medicated, but are uncontrollably impulsive or violent when they are off medication I see a missed opportunity. I see a kid that is doomed to a life of being a slave to medication. And one that is in deep trouble if a medication that works is ever removed from the market or suddenly sees an increase in price. I feel the same when I see a child that has uncontrollable obsessive-compulsive behaviors when they miss a dose of a drug.
I bring up adjuvant therapy because, despite my misgivings with medications, I see great potential in an integrative approach. If I (for example) work with a child that has a severe impulsivity disorder or violent outbursts, I can develop a behavioral plan to help manage their behaviors and teach them how to take a step back and think before they act because they are provided explicit, tangible consequences to their actions. When these children do not have access to medication, this is rather a difficult process, but it is not impossible. It just takes dedication. If this same child is on an appropriate medication, then instead of being at a baseline that is out of control, their behavior is somewhat normalized. This makes my work as a behavioral therapist/teacher much easier because the child is not so tightly wound up to begin with. The child now has a somewhat increased ability to stop and reflect before acting; and subsequently they are more receptive to my lessons. This is better for both of us, particularly them.
However, it remains my responsibility in such a case to be every bit as vigilant and thorough in my lessons as I would be had the child not been on medication. The medication in this case is only a tool to help calm the baseline level of excitability of the child to a level that they are not struggling just to maintain basic function. The core behavioral challenges still remain, they are just lessened temporarily by the medications. Often times the parents have a greater number of challenges at home than I see in school, and this is primarily due to drug naturally wearing off during the course of the day, so I see the kid at their best, and the parents see them in their more natural state. I want to help the child function in their natural state as well, not just in school when the drugs are at maximal potency.
An illustrative example straight out of left field
In thinking about adjuvant therapy as relating to children with autism, I came to a conclusion. We often use drugs to cover up behaviors so that we do not feel we have to deal with them. We do not necessarily use the medication to help the kids, but to make them “more functional”, whatever that means.
The example my wife came up with of how we can think of medications given to children with autism can be stated as the following made up scenario: I want to be a bodybuilder. So I go to the store (as well as the back alley) and invest in creatine, androsterone, steroids, and every other drug I can think of to make me big, muscle-bound, and strong. But, I see the meds as a means to an end so I do not put forth the effort to intensely work out during the day and I keep eating whatever I want.
After a few months, I see a decrease in my libido and show every other side effect caused by these meds. But I do not build muscles. In fact, I am somewhat flabbier than when I started my new routine! Why is this? Simple. I did not put in any of the necessary hard work. I though that the drugs were a means to an end. I had it exactly backwards. In reality, for these medications to give me big Schwarzenegger-like muscles, I had to flip my focus. I should have worked out 4-5 hours a day to near exhaustion, rigorously monitored my diet, and only then would the medications have complemented my hard work by amplifying the effects of every single workout.
The moral? Any medications will flat out not work the way we think they will if we are not willing to put in the serious effort to make sure we do our part to achieve our goals. This means working as hard as we can, working as if there were no medications helping us.
So what do I propose?
I propose a relatively simple solution. We focus on the behavior first, then we use medications if and when they are clearly necessary. I cannot state whether any given child should or should not be on medications, other than advising as I have before that we think of the child first and not of our own discomfort and try non-pharmacological methods before running to drug therapy. I think we should give behavioral intervention a chance. Whether that means ABA in the home or working with special education teachers as part of the IEP, we should give simple behavior modification a shot. If the behaviors are too severe and too intrusive in the child’s life and thus prevent day to day function, then the information collected during the behavioral intervention can be handed to a pediatrician, psychiatrist, or neurologist. These data will assist medical professionals by clearly defining the challenges that help them select the correct pharmacological intervention.
However, and I cannot stress this enough, I still feel the behavioral intervention should not be reduced. In fact, once the medication has started to work and the behaviors reduce, the child is now more capable of learning from the behavioral interventions. So, at this point if we redouble our efforts we may be actually making more headway toward fixing problem behaviors than we would in an unmedicated context. As such, if (and when as the case often is) it becomes necessary to wean the child off a particular medication, they will have collected a greater number of behavioral and mental tools to help them monitor and redirect their own behaviors. Optimally, they would be able to either not have to move to a new adjuvant medication or at least move to a relatively low dose.