I am 18, a senior in high school, and the only sibling of an older brother with low-verbal autism. I recently read an article in which Dr. Hyla Class discussed certain neurological drugs, their troubling side effects, and their relationship to violent behavior. Dr. Class also discussed the disturbing trend of individuals committing violent and homicidal acts while taking these medications. Some had even received dose increases shortly before their acts of violence were carried out. More troubling is the reluctance to acknowledge or study this alarming trend.
Throughout my life, I watched my parents try many different medicines for my brother. They were trying to reduce his OCD, echolalia, or restless behavior and hoping to increase his focus and language development. The medications either failed immediately, or had no effect. Only one partially helped, but eventually failed. Most meds were a horrible disaster that made Anthony’s problems worse. We nicknamed Anthony Mr. 1%....if there was a 1% chance of experiencing an opposite reaction, that’s what we would see. For example, if we gave Anthony a medicine to help his obsessive compulsive disorder, he would become even more OCD to the point that it was unbearable. My parents tried each of the following at one time or another…Cylert, Ritalin, Dexedrine, Adderal, Prozac, Paxil, Anafranil, Depakote, Zoloft, Wellbutrin, Strattera, and Seroquel …all failed. Many of the meds increased the problems they were hoping to make better. My mom gave up on meds for six years because they made Anthony extremely difficult to handle. Although Anthony was loud and somewhat restless, he was always sweet and gentle. The meds made Anthony irritable, oppositional, overstimulated, and aggressive. I could tell when a med was failing by my mother’s reaction. She was naturally patient and had no problem remaining calm…unless Anthony was being difficult on purpose. In that case, I would hear her struggling to keep a sweet voice while managing him.
When Anthony was 12, mom reluctantly decided to try meds again. Anthony’s echolalia was so constant and loud, it was interfering with school. Even if Anthony could do the work, he couldn’t be quiet long enough to participate, and he was disturbing others. We all thought Anthony might gain more language if he could “turn off the TV talk”. Since Anthony’s echolalia was more typical of Tourette syndrome, my parents thought a med for vocal tics might work. My brother was prescribed Abilify for his incessant echolalia. After 3 days, Anthony suffered a Palsy reaction. His middle school teacher called saying Anthony was ‘limping’. When my mom and I picked him up, half his body was limp like he had a stroke. The doctor said to give Anthony liquid Benadryl immediately and bring him in. They said an emergency room would take too long…the Palsy reaction could be permanent if not treated right away. This terrified my mother, who didn’t have the time to explain to me fully what was so urgent. The Benadryl worked quickly, and Anthony was fine. Seeing my parents’ panic was very frightening for me, especially since I was only 9 at the time. I was too young to understand how serious the situation was, but old enough to know something terrible was happening and was truly afraid. After that, things got crazier. Our family moved twice in the next 3 years because of my dad’s job. Therapy for Anthony was interrupted.
We finally settled when Anthony was 15, and I was 12. My parents found a good doctor thanks to Anthony’s new high school teacher. Anthony started taking Topamax. The doctor felt that increased blood flow to Anthony’s brain would reduce vocal tics. The best meds for that were in the same family as Abilify, and were not an option after his palsy reaction. Topamax was the second choice. Anthony still echoed…a lot…but overall seemed better. He seemed more connected and cognitive, and better able to formulate language. Anthony seemed to understand more direction sometimes, too. However, Anthony seemed more sensory, and we all saw more self-stim behavior. After a few years, the self-stim behavior started to outweigh the benefits we saw. My mom kept trying to change the dose times and amounts trying to find a good balance, but none of these changes seemed to work. My mom would always ask for my opinion. Anthony related best to me, so she felt my opinion was best. I was getting increasingly unhappy. Anthony didn’t relate to me like he used to. He seemed to want me to be audience to his self stim behavior, but did not want any interaction. He stopped playing video games WITH me, and wanted me to passively watch as he reenacted something over and over again. As Anthony got older, this medication started to make Anthony more aggressive towards imaginary characters. The most irritating problem was Anthony’s early evening anger jags. He would rant and rave nonstop for several hours. It was painful to listen to. His target would be a specific videogame or cartoon character. He would play a battle video game to self-stim instead of just playing. He would play the computer, name it after the character, set its power low while his was high, and beat this character for hours. It was awful. You couldn’t stop it either. If we took the game away, the echoing would start. He would simply scream at the character minus the game. My mom thought it was med rebound, so we tried dosing changes. She thought it could be food, so we altered diet. There was an endless parade of vitamins and supplements. While those helped us stay healthy, they did nothing to lessen the echoing, stimming, and the all night screaming. Because of this, I cannot stand games like MarioKart and Super Smash Brothers. Anthony would spend HOURS beating up Donkey Kong with the volume blaring. Dad made the games “disappear” thankfully. Anthony still asks for these games fairly regularly, but I’ve made it very clear that I don’t want Anthony to ever have these games again. Thankfully, my parents listen to me.
My mom and dad wanted my opinion about Anthony and Topamax. I felt Topamax was no longer helping him. I couldn’t interact with him anymore. I could only be an audience for his OCD behavior. I missed playful Anthony. We used to play videogames together, and watch “Cartoon Cartoon Friday”. Anthony couldn’t watch scheduled programming anymore…he HAD to control what we watched, and it was same thing over and over again…I couldn’t stand it anymore. My mom was sad to give up on Topamax. It was the only med that sort of helped, and now it was failing. The long evenings of screaming at invisible characters were too much for all of us. We all agreed the benefits of Topamax seemed to be over. We tried some other meds after that, but they all made him worse…just like when he was little. The last straw was Anthony having a sudden melt-down at State Fair. My mom struggled to calm him down and get us to the car. People were staring, and I stood quietly in tears. We gave up on neurological meds after that.
My mom decided to focus on family medical history, and tried to imagine how that might present on someone with autism. Anthony now takes meds for reflux and insulin resistance. He is much calmer now, and he is actually playing games with me again and watching new shows on Netflix. Autism clouds everything, but Anthony is affected by family history just like I am. I am insulin resistant too. My mom often asks me about how I am feeling on the meds so she can observe Anthony’s reaction. Anthony is unable to give detailed descriptions of how he feels…we generally have to guess. He can only give short answers like ‘hurt, pain, good, bad, yes, no or better’. My favorite Anthonyism is when he says a food is “ too healthy,” which means he is full.
I believe some medicines can be beneficial, but they need to be closely monitored. Many can cause serious problems as in the case of my brother. The only times Anthony was aggressive and screaming was on medication. Changes in diet seemed better for both of us. I think neurological meds are overprescribed. I can remember being at the lunch table in middle school, and all the kids were talking about the meds they were on. A few were on several at once. I was shocked that I was the only one at the lunch table that wasn’t on neuro-meds.
I don’t see anything wrong with
trying to improve symptoms with medication, as long as the doctors are
listening. I think too little time is
spent evaluating kids with autism. There
is a rush to generalize symptoms, and prescribe a medication. Diet, metabolism, family history, and plain
common sense are ignored. My mom once
tried to have Anthony tested for food allergy because he had a persistent skin
rash. The allergist was indignant. “I don’t believe food allergy affects
behavior” the doctor arrogantly told my father.
The doctor then proceeded to brag about the world renowned so-and-so she
had studied under. My dad responded, “My
son has a persistent skin rash and we want to make sure it isn’t from
food. Your education has no value to me
if you can’t make yourself beneficial…so here’s five bucks, go wash my car.” (I love my dad!) Why is it so hard to find a medicine that
actually works? Maybe the answer is in
the question. Is anyone really
Natalie Palumbo is Contributing Editor to Age of Autism.