Medication for Children with Autistic Spectrum Disorders (by Dr. Natalie Roth)
Possibly one of the more challenging decisions for parents with children that have an Autistic Spectrum Disorder is whether or not medication is an appropriate addition to a treatment plan. In my experience, most parents feel a profound sense of responsibility in making this choice for their child. They often express concern about their child’s comfort and safety, and I regularly hear parents talk protectively about wanting to maintain their child’s unique personality, even if his/her behaviors can sometimes be problematic. At the same time, parents want to maximize their child’s ability to make use of and develop the skills they have so that they are able to function as independently as possible at school, at home, and in their community. Navigating this decision often requires parents to carefully balance the potential benefits of medication use against the potential drawbacks. This weighing of options is not always easy as neither the benefits nor the drawbacks are always immediately apparent. As I’ve talked with parents who have been through this process these are a few points that I’ve found to be helpful:
Keep in mind that there are no medications that treat the core symptoms of Autistic Spectrum Disorders directly (the core symptoms being delays in social communication and reciprocity, and patterns of repetitive/stereotypic behavior). However, medication can be helpful in reducing some of the auxiliary problems such as behavior outbursts, helping to regulate sleep and lessening obsessive thinking or compulsive behavior. Additionally, many children with ASD have co-morbid diagnoses that can benefit from medication. For example, a child with ADHD (Attention Deficit Hyperactivity Disorder) or an Anxiety Disorder can often benefit significantly from medication is these conditions are accurately identified. Treatment of these features can lead to improvements in core ASD symptoms, but it will not alleviate them altogether. It’s important that medication trials be undertaken with realistic expectations. Additionally, keep in mind that medication for any developmental disorder is most effective when it is part of a more comprehensive treatment plan. Medication can have important benefits, but shouldn’t take the place of therapies designed to teach skills.
There are some choices when it comes to choosing a professional who can prescribe medication. If you have questions about whether medication in an appropriate option for your child, it is a good idea to initially speak with his/her primary care pediatrician. In some cases, this person may feel comfortable working with you around prescribing medication. He or she may also want to refer you to someone who specializes in this area. This referral may be to a Developmental Pediatrician (a pediatrician who specializes in caring for children with unique developmental needs) or to a Psychiatrist (a medical doctor trained in treating developmental and mental health issues, with specific expertise in using medication). If available, it can be helpful to seek out a pedatirican or a child psychiatrist who has experience treating children with Autistic Spectrum Disorders. Experience with how certain types of medication affect particular symptoms, how medications work together, and how children with ASD’s respond differently to medications can be very helpful. You should feel comfortable with your prescribing doctor’s level of knowledge and experience, and also with the office protocol for communicating around your child’s responses, your questions, needs, and potential emergencies. As a parent, you should feel supported by your medical providers in your attempt to advocate for the appropriate dose/timing of any medication. You will be the person who is most sensitive to both positive and negative effects of medication and this perspective should be valued.
When a family has reached a point where medication is being considered, they are often eager for results and it is challenging to remain patient through the process of finding the right medication and dosage. Appropriately, most doctors or psychiatrists prescribing to children will begin with a low dose of medication to determine whether or not it is well tolerated. However, this low dose may not be within a therapeutic range for your child initially, and I encourage parents to prepare themselves for gradual increases as they work with their doctor to determine the right dosage. Alternately, children with ASD are sometimes more sensitive to medication and an initial trial of a particular medication may result in a negative response. When attempting a new medication, it may be helpful to formulate a plan for how to respond if your child needs increased assistance. It can be very frustrating (and disappointing) to manage a negative reaction to a medication trial. Try to keep in mind, though, that this does not mean that there is not a different type/amount of medication that will work for your child.
A doctor will describe the side effect profile that accompanies medication use. As a parent, you should be informed about what to expect and what changes may signal potential problems. At the same time, it is just as important to have a clear understanding of what potential benefits are reasonable to expect so that you and your doctor can clearly evaluate whether the medication is providing improvement. When I’m working with a patient whose family is weighing a medication trial, I want them to be aware of the potential negative side effect, but I also feel that it’s important to understand that there are sometimes consequences to not using a medication if it would be helpful in improving their child’s ability to function and make use of other treatments that they are receiving. Sometimes I phrase this as the “side effects” of not using medication. Research with children who have ADHD, for example, suggests that those children effectively treated with medication were less likely to become involved in drug/alcohol use because their symptoms were managed. A child with ASD who also struggles with anxiety may not be able to implement and consolidate learned social skills because his/her heightened anxiety prevents real-life interaction with peers. Often the decision around using medication involves a weighing of the potential benefits with the potential “costs”. Talking through this question with treatment providers, your pediatrician, your child’s educational team, and invested family and community supports can often be vital in getting the information you need to make this decision.
If the decision is made to start a medication trial, I encourage parents to identify (with the help of their doctor and interventionists) two to five specific behaviors that they are trying to address with medication. Before starting a medication trial, I suggest that they keep some simple data on how often they observe the target behaviors on a daily basis (keeping track of the time of the day as well). Once medication has reached a therapeutic dose, continue to keep data on the occurrence of the behaviors during the same time frame. In addition, note any changes in a child’s environment or experience that may also affect their functioning (for example, did they return to school, go on a vacation, or become ill?). This type of data can be very useful when attempting to monitor whether a medication is effective. While certain changes in a child’s day to day experience can’t be helped, it is important not to make other intentional adjustments to his/her therapeutic plan during a medication trial as it is then difficult to determine which factor(s) are responsible for any observed changes.
For those who are interested in the types of medication that are most frequently prescribed for children with Autistic Spectrum Disorders, the National Institutes of Health provides a good summary of commonly used medications and their potential benefits and side effects (http://www.nichd.nih.gov/health/topics/autism/conditioninfo/Pages/medication-treatment.aspx).
Another very helpful resource is the medication “toolkit” provided by Autism Speaks: