Autism Data Collection Method: Calendars

Why Tracking Autism Behaviors is Crucial for Progress

If you’re a parent of a child with autism or a toddler showing early signs, you might feel overwhelmed with tracking behaviors, medical issues, and therapy progress. Your child might be on medications, supplements, or undergoing different therapies, and you may be unsure about what’s working and what’s not.

I’m Dr. Mary Barbera—an autism mom, registered nurse, Board Certified Behavior Analyst (BCBA), and author. With over 25 years in the autism world, I’ve developed a simple yet powerful calendar system to track autism-related behaviors, medical conditions, and interventions. This method has not only helped my own son, Lucas, but has also benefited thousands of parents worldwide. I still have years worth of data in these calendars and have had so much luck in getting doctors and therapists to really listen when I pull out my autism calendar data.

The Struggle of Tracking Autism-Related Issues

When my son was younger, we experimented with various treatments, including traditional medications, gluten-free diets, and supplements. However, I often lost track of dosages, side effects, and symptoms—which led to confusion about whether an intervention was actually helping or making things worse.

At the age of six, Lucas was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder (PANS), which led to multiple courses of antibiotics and steroids. It was during this time that I developed my calendar tracking system—a game-changer in managing his condition. Not only did it help doctors and therapists see what was happening, it helped to see that his behavior was due to pain and an automatic nervous system dysfunction. 

When families ask me, “should we try this sensory intervention”, or “what about this medication?” , I say that if it sounds good and won’t harm your child, try it and take some calendar data! 

How a Simple Calendar Can Help Track Autism Symptoms and Progress

A dedicated physical calendar (not an electronic one) is a crucial tool for tracking:

• Problem behaviors (e.g., aggression, self-injury, agitation)
• Medical issues (e.g., allergies, fevers, infections)
• Therapy progress (e.g., new interventions, changes in behavior)
• Medications and supplements (e.g., dosage changes, side effects)
• Sleep patterns (e.g., time to fall asleep, night wakings)
• Toilet training progress (e.g., accidents, successes)
• Community outings and transitions (e.g., rating experiences on a scale of 1-10)

By maintaining a monthly visual representation of these factors, you can easily identify patterns and trends—helping both you and your child’s medical and behavioral team make data-driven decisions.

5 Simple Steps to Start the Autism Calendar System

1. Get a Physical Monthly Calendar

Even if you prefer digital tools, a physical monthly calendar provides a clear, at-a-glance view of trends. Choose a calendar that is large enough to jot down important notes.

2. Use a Red Pen for Medical & Behavioral Issues

• Use a pencil for general scheduling (e.g., therapy sessions, doctor’s appointments).
• Use a red pen to document important medical and behavioral data, such as:
  
  • Medication changes
  • Agitation or aggression episodes
  • Sleep disruptions
  • Doctor visits
  • Supplements and dietary changes

3. Decide What to Track

Not everything needs to be recorded—focus on new or changing behaviors. Some examples include:

• If you start a new supplement, track its effects.
• If your child struggles with sleep, record wake-up times and sleep durations.
• If your child has frequent headaches, monitor when they occur and potential triggers.

4. Be Consistent & Look for Trends

Regularly reviewing your calendar will help you spot connections between behaviors and medical conditions. For example:

• Does your child exhibit more aggression around the time of allergy shots?
• Does a particular food or supplement seem to impact behavior?
• Is sleep deprivation increasing irritability?

5. Bring Your Calendar to Medical & Therapy Appointments

Your child’s medical team will appreciate the clear and structured data when adjusting treatments. This method has helped me adjust medications for my son and allowed behavior analysts to create better treatment plans.