A teaching aside
Disclaimer: This post will talk about medicine being given to autistic children. Although I have clear opinions on the topic, I am not giving specific medical advice or advocating a specific approach for anyone’s children. I do not know your family’s unique challenges, nor do I pretend to. I am only providing questions that I hope will be useful for families to think about when moving forward with treatment.
This post is going to describe a couple of situations that are often overlooked by families and medical professionals when medicating children. My focus is on autism, but what I am writing about applies to any developmental disorder or psychiatric disorder.
A tale of two tests
Over the last few weeks, I have had the opportunity to proctor the state writing exams to two adolescents on the autism spectrum. Both have an IEP and have a section 504 plan for reasonable accommodations during testing. In this case, I am the reasonable accommodation. My job is to simply verify that the student is on task and give them simple verbal cues to move forward. I am also allowed to read the question allowed and to read any passages aloud if the student is struggling. But mostly I just jabbed them in the sides when their attention wandered.
What made this a remarkable experience is that I was able to observe both sides of the medication spectrum among these students. Student 1 is entirely unmedicated. They have some rather serious motor stereotypy in their arms and they pull in their chin and frunce their face, this stereotypy lasts between 30 seconds and 1 minute, then they are fine and can return to task. However, if their attention wanders it is rather difficult to get them back on task, which is why I am provided as their accommodation.
Student 2, on the other hand, is given a number of medications (for privacy reasons I am not specifically revealing which ones). Without the medication, on days when this student forgets to take their pills, there are no stereotypy or attentional issues that I can see, and I have looked. When the student remembers their pills, however, one teacher described them as “…[L]ike a little meth addict scratching at their leg all day and fidgeting out of their skin”. They also have rotary movements in their limbs, pill rolling of their tongue, smooth eye movements become jerky, their hands unexpectedly jerk around when they try to type, possibly resulting from back and shoulder muscle spasms that are visible through the clothing, and a profound rotating rocking motion of their trunk is present nearly constantly-noticeably interfering with reading and writing. Also, they only get 1-2 hours of sleep a night due to restlessness and sleeplessness.
Testing was extremely difficult for this student because they had difficulty with the abstract questions. For an argumentative essay in which they needed to take a side on a question and defend it, there were no question marks in the question. It told the student the position to take and provided evidence in the associated texts both pro and con this position. But it did not have a question ot be argued. It took 2 days of gentle (and not so gentle) prodding to get this student to begin writing their essays because the question eluded them.
During testing, the only impediment to testing once the essays were begun was the typical response one gets during testing, “I hate this”, “This is boring”, “I hate you for making me do this”, and “I can’t do this, this is hard”. The motor stereotypies were present, but only got in the way when the student got excited because they figured something out. When I waited for the 30 second to 1 minute stereotypy cycle to end, we were able to get back on task.
Student 1 wrote two essays that were okay at best, and it was exactly to their intellectual and functional capacity. In this case, although it took a week to get two essays done, they were a fair test of this student’s abilities.
Testing was actually rather difficult for Student 2, but it was for entirely different reasons than Student 1. They understood the question perfectly well and wrote an outline on a piece of paper in under 20 minutes. When it came time to actually type, their difficulties manifested. Whenever they tried to start typing after a short break, their hand would unpredictably jerk upwards and outwards due to a muscle spasm in the deltoid. They also had to fight involuntary hand splaying movements that prevented them from holding onto a pencil to write as well as prevented precision typing. They had difficulty reading the essays on the computer screen because their body was jerking around and their eyes were unable to engage in smooth movements. So I read the essays to them. But that was all I could do to help.
They wrote two rather good essays, but it was nowhere near the capacity of this student. Like Student 1, it took 4 days to get these essays done, but the essays written for the test in no way reflected the capabilities of this student. I noticed during classes when they forgot their pills that they were much more lucid in their thinking and were actually extremely intelligent with a wide and varied vocabulary. When they remembered their pills, they were quiet, reserved, and had difficulty finding the right words for even simple concepts. And has innumerable tics and motor stereotypies that prevented engagement with the class.
Why do I tell these stories
I tell this story to make the following point. Student 2, although quantifiably more intelligent and capable of success in school than Student 1, does not perform any better than Student 1. This inability to reach their potential is not a limitation due to their autism. It is a limitation places on this student by the medications being prescribed by their pediatrician. They have been diagnosed by the pediatrician as being bipolar, have severe anxiety disorder, and high functioning autism. Only the ASD diagnosis has been confirmed by a neuropsychologist. The collection of pills given to this child severely limits their ability to perform basic day to day tasks and makes learning and schoolwork extremely difficult. It is true that this student is likely much less irritable at home (this irritability is often what gets a biopolar diagnosis in autistic children and is often treated with atypical antipsychotics), but given my experience with and careful observations of this student, I can say they are likely not going to achieve success in school given the side effects of their prescriptions unless a change is made.
In the school I have observed students given ADHD drugs to help them focus, despite not having ADD, let lone ADHD. One child has developed debilitating tics as a side effect and is now suffering through being given all the different drug options to see if one works and having to deal with the concomitant side effects. Another student has been given a profound stutter as a result of their medications.
On the other hand, we do have students with clear ADD and ADHD, and their medication helps. We have children with pediatric intractable epilepsy that would die without their medications. We have an autistic child with grey matter heterotopia. We have children that have been victim to criminal neglect and have legitimate diagnoses of PTSD. These medications are a great help to these children and measurably improve their quality of life. These kids need their medications and we are grateful they have access. It makes it so they can benefit from their education.
As the helpful portion of this post after ragging on medications above, here is a list of questions we all need to ask ourselves before moving forward with a doctor’s recommendations to medicate our children.
I think the most important question we can ask ourselves before moving forward with medicating our children is the following:
Am I giving Adam drug X because it is going to help him by making his life easier? Or am I giving Adam drug X because it will make him easier for me to handle and make my life easier?.
I know this sounds like a harsh question, and it is. But it needs to be. Far too often in my experience we as an American society give our children medication to make them more compliant, not to help them succeed. We give kids that do not like to stay on task Ritalin® or Adderall® so that they will “pay attention”, whether or not they actually show ADD or ADHD symptomatology. We give surly children antidepressants so they will not be so darn negative and down all the time, disregarding the black box warnings. We stress our children out by not providing needed structure to their lives and give them anti-anxiety drugs so they do not appear quite so anxious. Our children go through the natural rebellious phase that happens early in puberty and we medicate their irritability, suggesting they have some form of mood disorder not described by just being a 12 year old.
We provide our children free, constant access to overstimulating video games and endless hours in front of the television, and then we wonder why they do not have the ability to pay attention when we are lecturing them or when they get to school. We stress them out by unexpectedly changing the rules in the home or in school based on our moods, and subsequently blame the child for not being able to spontaneously be 100% obedient to all our whims (see earlier post on this topic). In all of these cases, I assert that we as a society are giving our children medication to save ourselves the hard work of providing the structure that the kids need and crave in their lives. In other words, we give them pills to make our lives easier, not to make theirs better.
What are all the side effects to drug X? Does the fact that Adam is autistic make any of these more likely.
This is probably the second most important question to ask. The fact that autistic individuals show different side effects than the rest of us has been known anecdotally for decades and is now being studied more closely. It is also important to ask with regards to side effects of drugs in autism, “What are the rare or uncommon side effects?”. For Student 2 above, the majority of the side effects they are experiencing are in the uncommon side effects, occur in <1% of the population area of the drug sheets.
It is also important to observe the effects of the drug itself. For example, after breaking his arm, my family and I found out that giving my brother Kyle Valium to calm him down actually only served to rile him up. In fact, it acted as a stimulant to him, even in doses sufficient to drop an adult male hundreds of pounds heavier than Kyle was.
Can we hold out giving Adam drug X until after puberty? Can we wait until Adam is 18-21 years old?
We often overlook this question. During puberty there are a lot of changes going on in a young person’s body and brain. This is a huge shock to the body. Hence the moodiness and inability to control their emotional state. The brain undergoes another rapid development during this period. The emotional centers of the brain as well as the frontal cortex are rapidly developing and modifying connections. If we can avoid medicating adolescents then we let these processes move forward uninterrupted. Adding a drug during this time may well serve as a shock to the system that can, and likely does, alter development. Development of the frontal cortex is something we should only mess with if it is absolutely necessary.
Can we help Adam succeed by changing his diet?
Often we overlook this one. In this case I am not explicitly talking about casein, gluten, wheat, allergies, etc. I am talking about the old school 3 squares a day with a healthy snack. I see autistic children come to school with a Rockstar® or Monster® energy drink. Seriously?!? Does no one else see this as a potentially bad idea? These poor kids are given caffeine and sugar in lieu of a healthy breakfast and expected to succeed. This is a recipe for guaranteed disaster.
In my decidedly biased opinion, strictly regimenting a child’s food intake can only help. Making sure they have a healthy breakfast, lunch, and dinner, as well as a healthy snack (you can IEP a 10 AM and 2 PM snack time rather easily) will improve concentration and make redirecting problem behaviors much easier for parents and educators. A grumbly tummy will always distract a child and will guarantee they are not learning anything. For children with autism this is often exaggerated as they do not know how to express the fact that they are hungry, so they will misbehave. For myself, my brain figuratively shuts off and I become irrational when I am extremely hungry. My driving becomes rather bad, my logic fails, and I am very, very grumpy.
Can we help Adam succeed by implementing an exercise program?
This is another overlooked one. All children have far more energy than we know what to do with as adults. It is reasonable to assume that if we as adults feel great after a run or yoga or pilates or crossfit, why wouldn’t kids gt the same benefit.
Particularly for children with autism, exercise has been anecdotally linked with less anxiety, fewer tantrums, less rage, and less angst and lashing out at adults. I propose this si simply because the anxious energy these kids have gets burned off. I know personally I am a bear to deal with if I am cabin fever-y and have not had the chance to go running or hiking for a few days.
We can put our autistic kids in yoga classes or IEP in a daily PE class that involves running or other strenuous physical activity (i.e., makes the kid sweat for 20 minutes a day). Something to get out the excess energy so they can sit still long enough to attend.
I think we need to ask ourselves some very hard questions before moving forward with medicating our children with autism:
- Am I really medicating them to help them be successful or am I honestly doing it to make my life easier?
- Are the drugs we are considering going to impede my child from being able to learn in school?
- Is there a way to help my child without prescription drugs?
If any of the answers to the above are yes, then we need to think twice before moving forward with medications. Far too often in our society prescription drugs are treated as a panacea. They aren’t. More times than not they do more harm than good, particularly in children with autism.
If the answers to the above suggest you are trying to help your child be successful, then I recommend caution and close supervision at home and school. Only by collecting data and having open discussions among parents, educators, doctors, and the children themselves can we be sure we are helping rather than hurting our children in the long term.