This blog post was written by Dr. Frank Del Rio, Psy.D., LPC, CART
The decision to use medication (or not) to assist individuals with Intellectual and Developmental Disabilities (IDD), especially Autism Spectrum Disorder (ASD) is an extremely difficult one for parents and caregivers. Here, I will attempt to answer some common questions I am asked and factors to consider when determining how to manage an individual’s symptoms as well as some comments from families I have worked with in the past.
I do understand that Autism falls under the IDD umbrella, but for purposes of clarity will list it as “IDD/Autism” in this article.
Deciding to Medicate
When a person is diagnosed with IDD/Autism, we are faced with an unbelievably tough choice: Use medication to treat symptoms? Or try alternative routes?
You wonder: What if the medication harms my child’s health? What if it changes her personality? Am I just failing as a caregiver? Naysayers argue that caregivers rush to medicate individuals, but I know this is a decision you agonize over. Learn what considerations convinced other families to use or not to use medication. And take heart: You are not alone. Some approximate quotes from families:
"It's a difficult decision, and it's different for every family. We struggled for years with our decision to medicate our child."
"It is a parent's decision about how to care for her child. People who live with IDD/Autism, or have a loved one with IDD/Autism, know how serious and real this disorder is. The ones who do not have IDD/Autism in their lives cannot fully understand this.”
"I haven't medicated my son yet, but I will probably do so in the next year. If anyone says I rushed to do it, I will tell them that they have not lived with him for the past six years!"
Does He Really NEED Medication for IDD/Autism?
This is the first question caregivers often ask after a diagnosis. The answer is, if the individual’s symptoms are interfering with social, emotional, or academic life, it might be time to think about medication. Alternative treatments like behavioral therapy can help to control behavior (and should be utilized and considered first), but often when kids struggle, they need more help with focus, self-control, and organization. Medication can help.
Quote: "We had exhausted all 'natural' options first and he was only getting worse. With meds he can actually learn and even excel!"
Are Medications Safe?
Medications are a proven, safe, and effective treatment for IDD/ASD. Years of research and clinical trials show that trying out medication makes sense after a careful diagnosis. The risks of using these medications are small and generally reversible. If side effects do occur, a physician can reduce the dosage, change it, or discontinue use. The trick is careful monitoring and parent-doctor communication.
Quote: "We have changed meds and increased dosage twice. It's a process, continually changing."
What About Side Effects?
The most common side effects include appetite, headaches, dizziness, being tired, or trouble falling asleep. Side effects differ depending on the medication. Lowering the dose, changing meal schedule around medication, or switching medication can help. Your physician can help you address and manage any unpleasant effects.
Quotes: "Do your research, know the side effects, and if it completely changes your child for the worse, then switch meds.”
"There are downsides and side effects and they don't work for everyone. But if they do work for you, or your child, the change can be profound."
How Do We Know Medications Will Work?
Medications have a documented history of being effective. However, medication is not the answer for everyone and there are people who do not tolerate medication well. Talk to your doctor about a trial period. If symptoms don't improve, caregivers can always reassess treatment options with the doctor.
Quotes: "We decided to give it a month on medication. Within a week he was a calmer, more emotionally steady little boy. We didn't look back after that!"
"We didn't want to medicate, but after a well-designed trial our child's ability to learn and his ability to sequence and function at school and in public improved so much."
"I did not want to put him on drugs at first, but then I realized that if I didn't like the effect, I could always take him off."
Ditch Medication Shame
Drug therapy for IDD/Autism is not a cause for shame. It doesn’t mean you’re a bad or incompetent parent. It shows that you care about your child, and you want him to have the best chance at success.
Quotes: "One day I sat back and thought to myself, 'Am I not medicating because it's what's best for her or because I will feel like it's a personal failure?'"
"We realized that our youngest was getting known as the 'troublemaker' and how that impacted her relationships within the family and at school. It felt selfish not to try medication to see if that would help."
Do the Research
Talk with doctors and other parents who have experience with the medications you are considering. Research the medications online (at a reputable site), and read the latest news. Ask questions until you feel comfortable that you understand all of the benefits and risks. Make sure to separate myth from fact, and hold off on a decision until you have all the facts.
Go With Your Gut
Medications can work wonders when they are used at the right frequency and dosage. They can be dangerous if they are used improperly. Don't start a regimen until you are totally comfortable with your decision. And never begin a treatment plan of any kind without a doctor's supervision.
Quotes: "Trust your instincts, you know your child better than anyone."
"I instantly knew in my gut that without medication my son would lose his self-esteem in school when he couldn't succeed because his brain wasn't working 'right' and other kids didn't like his behavior."
Don’t Let Naysayers Dissuade You
Some people will say, “I would never give a medication to my child,” or “Ritalin is kiddie cocaine.” Chalk it up to their lack of knowledge and move on.
Quote: "When I was making this decision, someone asked me, 'Would you withhold medication from your child if she were diabetic?' It really made me think."
Be Patient with Yourself
Every family has different preconceived notions about what medication means. Go slow with your decision-making. Take time to assess how you feel, and select a physician who will work with you to find the best treatment plan – not just the fastest fix.
Finally, always remember that your physician is an excellent resource if you have specific questions regarding the use of medication. Additionally, we at The Arc will be glad to assist you if you have any questions regarding medication use, behavior interventions, or any other questions regarding individuals with IDD/Autism.