Data-based Decision Making for Parents of Children with Autism

Physicians, psychologists, therapists, and researchers all keep records. Records help them to track the efficacy of treatments, see how their patients progress over time and adjust their methods and tactics accordingly. As the parent of a child with autism, you can collaborate with your care team by keeping records in tandem in order to achieve similar goals. 

Keeping records can help you to: 

1. Identify patterns – you might notice that behavior is most likely to occur in a particular situation, or that disrupted sleep is more likely after a particular food. 
2. Monitor consistency of support – Remembering to take medications, do specific exercises, or engage in-home therapy practices is much easier if you record them. 
3. Share with your care team – Your records can be invaluable in helping your care team form a deep understanding of your child with autism by getting to know their needs, behaviors, and preferences.

Memory is not as reliable as we think. Emotions, hopes, and fears can distort our recollections. When it comes to caring for an individual with autism, notes, photos, and measurements repeated in the same way at regular intervals, help us see the big picture. 

For example, you might believe your child’s sleep challenges are getting worse because they had a couple of bad nights. It’s only when you look back at a sleep journal that you realize that these nights were outliers. Your child has actually slept better on average over the last month. 

What to track

You can track almost anything. What you choose to track depends on your current goals and challenges. Consider tracking: 

• Symptoms
• Behaviors
• Mood and emotional responses
• Potential side effects
• Sleep
• Eating
• Activity levels
• Medications

Remember that many behaviors are connected, so if you are trying to help your child with autism improve the quality of their sleep, you need to track more than their nighttime activities. Diet, activity level, medications, and even mood and emotional responses could influence or be influenced by the quality of sleep. 

You can also track the results of periodic self-assessments like the Autism Treatment Evaluation Checklist. ATEC scores and other self-assessments can give you a framework to assess changes over time. 

How to track it

Consistency is more important than format. Choose a method of data tracking that will be convenient enough for you to stick to. Here are some options that might work for you: 

• Paper journal – Some people feel most comfortable writing in a traditional paper journal. Choose one that is easy to carry around. You might even have a small pocket-sized notebook where you write observations during the day, and then transfer them to a larger more detailed space in the evening.
• Digital document – If you track data digitally, consider storing your record on the cloud where it can easily be accessed even when you are traveling. Just make sure it’s in a password-protected space to protect sensitive health information.
• Health tracking app – Several health tracking apps exist that can be downloaded to your mobile device. Some of the more robust ones require payment, but there are free options available. Some apps track only specific elements like sleep while others are more comprehensive. Look for one that has the features you want. 

Whatever method you choose, try to write down your observations at the moment, as close to the time of the situation or behavior as possible. For example, record meals at mealtimes so you don’t have to try to recall what has eaten 12 hours ago. Also, be specific. Instead of recording that Tommy seemed sad today, describe the behaviors, statements, and expressions that made you think Tommy was sad. 

What to do with your data

Share your records with your care team. Information you’ve recorded can help them choose interventions and improve the quality of support. When challenges do arise, your care team will have the information they need to help address these issues. 

Tracking symptoms, behaviors, and other information about your child with autism can help you see progress over time and know where new interventions may be needed. Recording this information in a safe place can relieve some of your mental burdens so you don’t have to hold it all in your memory

If keeping track of all of these records feels overwhelming, watch Standing on Top of the Paper Mountain presented by Anissa Ryland, Director, The Johnson Center for Child Health & Development.

ARI thanks Anissa Ryland of The Johnson Center for Child Health and Development for her contributions to this article.