Medication: Our Child, Our Choice

I have two subjects I feel the need to address today, but I can’t seem to find a good way to incorporate the two. Therefore, I think it only fitting that I make a separate post tomorrow!

Today, however, I’d like to discuss the medication that Ethan has been taking for the last few weeks: Risperidone. This is the generic brand of the drug Risperdal. Now, there’s no nice way to say this, but it is an antipsychotic drug. In large doses (and in adults), it’s primarily used to treat the symptoms of schizophrenia and certain problems caused by bipolar disorder.

In children with autism, however , and in minute doses (Ethan takes .5 mL in liquid form at bedtime every night), it is used to curb aggressive behaviors, violent meltdowns, and just generally improve their mood so that they are less stubborn and resistant. Yes, there are pros and cons to taking it, just like there are pros and cons to any other drug out there that you could take for just about anything. Even herbal remedies have pros and cons to them! 

Some people have undoubtedly wondered why we chose to try medication with Ethan. Now, let me be clear, here: my husband and I do not owe anyone an explanation, nor are we obligated to justify ourselves to anyone. I am volunteering this information for other parents of autistic children in the hope that, should this be an option they are considering, our experience will help them decide one way or another whether or not this is a viable option for their child and their family as a whole.

That being said: a few months ago, we noticed that Ethan was getting more and more aggressive with Alex, his younger brother, who, at the time, was not yet a year old. At first it seemed harmless enough: snatching a toy away from him here, pushing him down there. We attributed it to typical older brother behavior and resolved to just keep a closer eye on the two of them while they played together.

But it started getting worse. It reached a point that we were unable to leave the two of them in a room alone together at all, otherwise screaming and crying ensued and usually resulted in Ethan being put on a Time Out in his room, which would bring on a complete and total meltdown and would in turn result in Ethan throwing toys at the walls, pulling things down off of his dresser, hitting himself, scratching himself, and just generally being destructive.

One weekend day when my husband was home, I left the living room to take a shower. He was on the computer and the boys were playing, and while Ethan was being a bit rougher than we care for, he wasn’t actually touching Alex, so my husband let it slide. When I came out of the shower, however, I heard grunting, crashes, and screaming from Ethan’s room. I knew immediate that something had happened, so I came out in the living room to find out what had transpired during my 20 minute absence. What my husband told me genuinely frightened me. Apparently, not long after I’d left the room, he heard muffled screams and couldn’t tell whether it was Alex or Ethan. He got up and walked around the corner to the kitchen/dining room area and saw that Ethan had his then-10-month-old brother pinned down on the floor on his back, his knee in his chest, and had both hands covering his nose and mouth, and Alex was hysterical and having a hard time breathing. My husband had to yell at Ethan to get him to get up off of his brother, and Ethan spent the rest of the day in his room. We were completely horrified and knew at this point that we had to do something. We had been considering the option of medication for a while but had gone back and forth. This incident was the clincher. I was not about to spend my days protecting one of my children from the other.

Now, I feel the need to pause and insert something, here. Those of you who know my boys and, primarily, know Ethan, may be sitting there thinking, “But he’s so sweet! He could never behave that way!” Well, yes, you’re right; he is sweet. And normally, he doesn’t behave this way. But in individuals with Autism, they don’t know how to not give in to their impulses the way neurotypical people do. Especially as children, they have a hard time considering that there may be negative consequences as the result of a negative action. In short, they don’t think; they just do.

Risperidone is designed and prescribed, in small doses, as I said, to autistic children in an attempt to curb these impulsive behaviors. Does it always work? No. It is entirely dependent on the individual in question. Does the same antidepressant drug prescribed for one person suffering from clinical depression work exactly the same as it would for another with the same condition? Absolutely not. Sometimes it’s a matter of changing the dosage, sometimes the prescribing psychiatrist may decide to add some sort of antidepressant (SSRI – selective serotonin reuptake inhibitor), and sometimes they think the best course of action would be to try something else entirely.

As I said, Ethan has been on Risperidone for a few weeks now, and the truth is that yes, he still exhibits some aggressive behavior, but it is significantly less than what we were seeing. His communication skills have improved even more; he’s easier to talk to, reason with, and he communicates with us better. When I ask him a question now, he actually answers me almost all the time with “Yes” or “No,” rather than repeating my question back to me or rephrasing my question as an answer (i.e., “Ethan, do you want a PBJ for lunch?” becoming “You want a PBJ for wunch.”).

Speaking of lunch: interestingly enough, one of the drastic changes we’ve seen has been Ethan’s eating habits. Mealtimes a few weeks ago were very stressful, and it was almost always a battle to get a decent amount of food into him. 

Let me lay out for you what a daily menu for Ethan looked like just a few short weeks ago:

• Breakfast: A “breakfast corn dog” (one of those Jimmy Dean sausage links wrapped in a pancake) OR banana bread, OR French toast sticks (with no syrup), but only the Farm Rich brand, and they had to be cinnamon. If they were a different brand, Ethan knew, and he would not touch them.

• Lunch: The outside (crust) of a PBJ OR a “regular corn dog,” followed by animal crackers OR fruit snacks OR Cheerios “with no milk.”

• Snack: Cheerios with no milk, OR animal crackers OR fruit snacks OR graham crackers.

• Dinner: Usually one of the above items, either repeated out of desperation or rotated (for example, if he had a breakfast corn dog for breakfast that morning, we would usually relent and give him French toast sticks for dinner, just so he would eat something). Dessert, again, would usually be a rotated item from the above list. 

He would only eat cupcakes “wif no frostin’,” and corn dogs had to be sliced with a serrated knife into half-inch wide slices. If any of the breading was torn, he would insist on Daddy or I eating that piece and would refuse to touch the rest of what was on his plate. He would not eat broken graham crackers. If a Cheerio in his bowl was broken, he would eat around it and sometimes go so far as to pick it off of his spoon and lay it on the table before putting the spoon in his mouth.

So, I won’t lay out a what a typical menu might look like today for you, but I will tell you that Ethan is actually trying, eating, and asking for new foods now! We couldn’t be happier. Some things that he’s eating now that he wouldn’t touch or even taste before include bananas, macaroni and cheese, grilled cheese sandwiches, turkey sandwiches, chicken nuggets, rice, tortillas/quesadillas, Jell-O, fruit cups (his favorite is peaches), and he actually asked his daddy for a taco one night!

Some other things that he’s okay with now are eating a piece of his corn dog even if the breading is torn, keeping his shirt on if it gets wet (like, if a drop or two of juice spills on his front, he used to hiss, claw at himself, rip his shirt off, and run away), and water getting in his face when we wash his hair. These things were intolerable to him a few weeks ago.

He’s also a lot more easygoing if plans change now. Anyone with an autistic child knows how upset and distressed they can get when plans or routines change for them. Ethan is mildly upset at first if we change plans now, but is easily distracted and, most importantly, listens and understands when we explain to him why plans have changed. He’s usually fine with it.

And now, the biggest change of all: he’s talking to and playing with other kids! He doesn’t wait for them to approach him on the playground anymore; he walks right up to them and says “My name is Ethan and I’m four years old!” We were at the playground the other day and he walked right up to a group of girls (I know, I know, girls already?!) and was grinning at them shyly. One very sweet girl who looked to be a bit older than Ethan asked him if he wanted to play with them. To my shock and surprise,  he confidently answered “Yes, I do!” He climbed into the boat with them and they proceeded to play “Pirates” for all of about 5 minutes, which I’m sure is as long as any of their attention spans could stretch. But my heart melted! This was the little boy who, just last December, refused to go down the slide at the playground because there were two little girls using it. This is the little boy who screamed and ran away to hide behind his father or me whenever other children tried to talk to him or interact with him. He’s got friends at school, and he doesn’t make “angry cat noises” (as I used to call them) at other adults or say that he doesn’t like someone when they try to talk to him. He makes eye contact with people other than family members (however brief it may be), shakes hands and says “Hi, my name is Ethan. Nice to meet you!” He’s even more affectionate with us than he used to be. When I asked him yesterday if I could cut his hair, instead of getting the standard “angry cat noise” and the “I don’t wanna wet Mommy cut my hair!” that I expected, what I got was, “Well, okay.” 

After giving Ethan a bath to wash all the hair off, I was knelt down on the bathroom floor drying him off. I saw out of the corner of my eye that he was smiling at me, and when I looked up at him he grabbed the sides of my face and kissed me on the lips. As if that weren’t shocking enough, he then threw his arms around me, hugged me, and said, “Oh, I wub you, Mommy, so, so bery much!”

That is a memory that I will cherish until my dying day.

Now, there is one con that we’ve spotted with the Risperidone so far. Are you ready? For about a week there, Ethan would wake up once, sometimes twice, a night. But he went right back to sleep after some water and a little snuggle from Mommy or Daddy.

“That’s it?” you say? Yep, that’s it.

Has Risperidone made our lives perfect? Absolutely not. Is life with an autistic child ever perfect? Absolutely not. But it has made our family life and, more importantly, Ethan’s life, so much more enjoyable.

So, to you naysayers out there who are against medicating children when it’s necessary and warranted, especially when the child in question is not your child, , I have this to say to you: the results speak for themselves. Our family, our child, our choice. And finally, to put it bluntly:

We’re happier, and Ethan’s happier. Mind your own damn business.