My son, who has been diagnosed with autism, has been struggling with self-injury. His doctor is considering whether medication could help. What can I do to prepare for this conversation?
Answered by
Megan Atthowe, Megan Atthowe, MSN, RN, BCBA
Former ASAT Board Member
First, you should know that there is no medication that specifically treats autism. Medications approved by the United States Food and Drug Administration (FDA) for other conditions can be useful only to lessen certain symptoms. That said, off-label use of pharmaceuticals is by no means unique to autism and is common practice for many health conditions. While research on the use of medications with individuals with autism is growing, our body of knowledge is still limited. In addition, medications affect every individual differently. Children can respond differently to medications as they grow and develop, so it is likely to take time to find the best medication at the appropriate dose. In other words, medication management is a highly individualized, complex, and continual process. It is a good idea to be prepared with the right information before your visit to your healthcare provider.
Second, you should know that if a child with autism shows a sudden onset of self-injurious behavior, it is urgent to rule out a medical explanation. The behavior may relate to pain from a medical issue (e.g., ear infection, reflux, constipation, dental pain). Please discuss this with your son’s health care provider.
Third, do you know how often the self-injurious behavior occurs and what function(s) it may serve for your son? Frequency and/or intensity data, a specific definition of what the behavior looks like, and an understanding of the behavior’s function will enable your child’s team to treat the behavior more effectively, and it is helpful to share this information with your son’s health care provider.
I encourage you to ask your son’s teachers to share any information they have about the self-injurious behavior with your healthcare provider. For example, your son’s teacher could provide the data gathered in the classroom for you to bring to your visit. Note that he or she would need your consent to talk to your healthcare provider or to share any confidential information such as behavior data.
If your son’s educational team is not already collecting data on this behavior, please ask them to start right away. If you have not been keeping track of the self I injurious behavior at home, please start right away, even if there are only a few days until your visit. An easy way to do this would be to use a calendar or notebook. Record specifics about the incidents. You can do this by describing the behavior, listing specific triggers or antecedents that may have been present (i.e., what happened right before the behavior), recording how long each episode lasts, recording the time of day they occur, and indicating how you responded to it. Your son’s teacher likely has a form that you can use and may have suggestions on how to carry out good record taking. Include any recent changes in the behavior you have noticed. It is difficult for anyone to recall these details accurately, especially if the behavior happens frequently, so writing them down right after the behavior occurs will help you share the most meaningful information you can with your healthcare provider.
In addition to writing down information about the current levels of the behavior, be prepared to describe how the school and your family are addressing the behavior and how long that plan has been in place. Some questions that would be helpful to consider include:
- Has your son’s educational team considered a functional behavior assessment or used applied behavior analysis (ABA) to target the behavior?
- Does your child have an IEP (Individualized Education Program)? Does it include a formal behavior reduction plan?
- Is your son receiving other therapies (e.g., speech therapy, physical therapy, occupational therapy)? Are those providers collecting data and/or implementing coordinated behavior management strategies?
Research supports ABA as an effective intervention for decreasing problem behaviors, such as self injury, as well as for teaching new skills to children with autism. It is important to ensure that a qualified behavior analyst is supervising all ABA interventions, as they must be implemented correctly to be effective and safe. Your healthcare provider may be able to refer you to a local ABA provider, or you can find a list of Board Certified Behavior Analysts (BCBAs) at the Behavior Analyst Certification Board’s website.
Before your visit to the healthcare provider, prepare a list of names and doses of any medications your son takes, as well as any over-the-counter medications, vitamins, or other supplements. If your son receives any therapies such as ABA, speech therapy, etc., share that information too. The health care provider will want to ensure that any new medication is safe to take and will not interact negatively with other medications or therapies.
If you and your healthcare provider decide to start your son on medication, decide beforehand what the goal is for the course of the medication. How will you know when the medication has been effective? How will you know if it is ineffective? Be specific and write the goal(s) down. Schedule a follow up appointment where you will check in with your healthcare provider on your son’s progress. He or she may have specific suggestions about what type of data to keep.
There are some important questions you should have answered before you leave the medical office. Make sure you ask any questions you have and restate the doctor’s recommendations; a responsible health care provider will want to know you understand how to use the new medication correctly.
Key Questions:
- Have medical factors that may cause or worsen self-injury been considered and ideally ruled out?
- What is the name of the medication?
- What is the medication used for?
- When and how should I give it to my son, and how much do I give?
- Should I give this medication with food?
- What desired effects should I expect to see?
- What are the common side effects?
- How long will it be until I notice the desired effects and side effects?
- What side effects are serious, and what should I do if I notice them?
- Will side effects lessen over time?
- Are there any food or drinks I should avoid giving my son while he is on this medication?
- If I decide that I would like to stop giving him the medication, what should I do?
- What should I do if I miss a dose?
Although you did not mention if your son is on any other medication, again, it would be important to ask about any drug interactions that may occur. In addition, ask your health care provider to provide a note for your son’s school describing any new medication or treatment. Teachers, therapists, and other members of the team should be informed to watch out for potential side effects. There may also be other aspects of the self-injurious behavior to assess and track through ongoing data collection.
Finally, if you think of questions later, do not hesitate to call and ask your physician, nurse, or pharmacist. Please note that there is information about research related to medications on the ASAT website. Please visit our ‘Treatment Summaries’ page on medication for more details. Again, I encourage your son’s team to conduct a functional behavior assessment and develop a formal behavior plan as needed based on the assessment findings.
Megan Atthowe, MSN, RN, BCBA, LBA, is a registered nurse and behavior analyst who has worked with people with autism and other special needs in educational, home, and healthcare settings for over 15 years. She currently provides behavioral consultation and specialist services for students with autism served in a public school district.
Citation for this article:
Atthowe, M. (2018). Clinical corner: Discussing medication recommendations for your child with your healthcare provider Science in Autism Treatment, 15(1), 9-11.
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