The author of our newest AS-ATN/AIR-P tool kit describes how it grew from the needs and desires of families
Guest post by pediatric nurse practitioner Lynn Cole, associate director of clinical services at the University of Rochester’s Division of Neurodevelopmental and Behavioral Pediatrics, one of 17 Autism Speaks Autism Treatment Network (AS-ATN) centers. Lynn authored the newly released AS-ATN/AIR-P* tool kit Autism and Medication: Safe and Careful Use.
I work with lots of families struggling with challenging autism-related behaviors. Together, we find ways to improve daily life for their children. This can include developing more constant and predictable daily routines and schedules.
Often, a therapist can help children learn how to manage the emotions behind problem behaviors. We know, for example, that anxiety is particularly common among children and teens with autism. Relatively few will express these feelings in words. Instead, we see it in their behavior. We may see increased pacing, rocking or repeating words or phrases. They may have increased difficulty sleeping or paying attention. Some show anxiety by having tantrums or hurting themselves or others. This is why it’s so important to try to identify the emotions or what a child is trying to communicate by his or her behavior.
Sometimes, behavioral therapies alone are not enough. Sometimes, medicine helps.
Medicine isn’t the right treatment for every child with autism. However, it can be very helpful for some children in combination with behavioral therapies.
The decision whether to use medicines to manage problem behaviors can be challenging. In 2011, we published the ATN-AIR-P Medication Decision Aid to help parents and physicians work through the decision process together. Naturally, the need for guidance doesn’t end once a family decides to try a medication. Parents want to ensure that the medicine is working as it should. They want to minimize and monitor any side effects.
In our experience, providing adequate information is crucial to helping families use behavioral medicines smoothly. For this reason, we developed our newest AS-ATN/AIR-P tool kit: Autism and Medication: Safe and Careful Use. (Available for free download here.)
The tool kit opens with sections that help families understand what to expect when starting such a medicine. It also provides questions that parents can use to gain more insight from their child’s doctor or nurse. In particular, parents often wonder how they can tell if a medicine is working as it should. Our tool kit helps with this in two ways:
First, it helps families understand and identify “target symptoms.” Target symptoms are the behaviors that cause a child the most problems. They might include difficulty paying attention, aggression, hyperactivity, sleep problems or tantrums. When families and their healthcare providers agree on the target symptom or symptoms, it’s easier to judge if a medicine is effective. We want to see improvements in at least some target symptoms. At the same time, it’s reasonable to expect that the medicine won’t relieve all challenging behaviors.
Second, the tool kit helps families monitor and track improvement or worsening of target symptoms. Using its model charts, parents can record their observations.
Monitoring and Managing Side Effects
For good reason, most families worry about side effects. This tool kit helps here, too. This begins with guidance on questions to ask a healthcare provider. A suggested “action plan” helps families work with their child’s doctor or nurse if side effects appear. Fortunately, families can manage most mild side effects with guidance. The tool kit provides clear information on dealing with such common side effects as low appetite, weight gain and sleep problems.
As always, we are here to help our families get the information they need. With this tool kit, we hope to empower our families to use medicines safely, carefully and effectively. Please write to us about your experience at ATN@autismspeaks.org.
* AS-ATN/AIR-P tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, in its role as the Autism Intervention Research Network on Physical Health (AIR-P). The AIR-P is supported by cooperative agreement through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS, or Autism Speaks.