Day 13: Data Collection

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This is Day 13 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up. 

For years I have known I should start keeping data on Mr Rockstar.  Every time we see a therapist I get questions about the frequency of his meltdowns, his sleep, his habits, etc.  If you are dealing with a complicated system (like a child with ADHD, Autism, SPD, etc) and you want to see what is driving certain negative behaviors or what helps alleviate the behaviors then you need to be collecting data.

Before I started collecting data routinely, all I could see was the last few days.  However the last day or two had been is how I felt.  If we had a bad couple days then I was sure we needed to try something new.  If we had a good couple days I thought we had it all figured out.  Of course Mr Rockstar has good and bad days just like everybody else.  What I really needed to look at is the bigger patterns.  I needed to see what his average day was and then track as we made changes to his reward system or medication.

What I Use for Data Tracking

When I first started tracking data I was writing it down on a piece of paper.  This worked fine but I am so bad at remembering to bring the paper with me plus if I wanted to graph the data to see trends I would have to sit down and type it all in.  Before we started our elimination diet, I knew I needed a better system of data collection.  It turns out there are a ton of apps out there.  I settled on Autism Tracker Pro.  It costs $4.99 but you can download the Lite version and use it for up to 30 entires to try it out before you buy.  It allows you to easily track mood, behavior, food, weather, sleep, etc.  Every time Mr Rockstar hits his sisters I tap the “Aggression” button.  It is that simple.  The app is very customizable and will even chart out the data on your iPhone so at a glance you can see if for example “Aggression” is better to worse this week than the previous weeks.

Here is an example showing average Aggression and total count of Property Destruction by week for the 8 weeks I have been using the app:

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Here is an example of what data entry page 1 looks like.

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You just simply select which category (for example aggression) you want to add an entry to.  Once you have selected “Aggression” the next data entry page allows you to select the severity from None, Mild, Moderate, or Severe.

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You can easily edit the time of the entry (for those times it takes a while to get to the entry because of a crisis) and add notes.  For example you could have a note for what triggered the aggression.

What I Track:

Mood:

  • Happiness – of Mr Rockstar.  Maybe I should start tracking my sanity level too?!?  LOL
  • Stress – Is there any major stress at the moment that could be driving his behavior?
  • Activity Level – more or less energy than normal
  • Hyperactivity – sometimes Mr Rockstar is full of energy but other times he is hyper, unable to focus or sit still, and talking a million miles and hour.
  • Weather

Behavior:

  • Communication – at times Mr Rockstar becomes virtually non-communicative.  It is like he is stuck in his own head and is so bothered by something he can’t even come out and say what is bothering him.  Other times he can talk my head off and he asks pretty deep philosophical questions.
  • Compliance – How quickly does he comply?  Does he comply at all?
  • Clothing – Is his clothing bothering him today?
  • Personal Space – Is he inappropriately in someone else’s space?
  • Independent Play – How much interaction does he need from me to keep him playing positively?  Often times on a bad day he needs/seeks out my attention every 2-3 minutes because he is constantly having melt-downs over toys not doing what he wants.  On good days he can play by himself for 30-40 minutes at a time with only brief check-ins with me.
  • Screaming/Roaring – When something really bothers Mr Rockstar he will start roaring like a lion at it.
  • Spitting/lip licking/biting – Mr Rockstar frequently licks his upper lip.  He also has a tendency to bite weird things when nervous and to spit at people when upset or nervous.
  • Aggression – from mild to severe.
  • Property Destruction
  • Time Outs – length and frequency

Food: While on our Elimination Diet I was tracking Foods (Yes/No for eggs, dairy, gluten, corn, soy, etc.).  I could still be tracking foods….and I probably should but it got to be too much.  We are currently eating through our pantry and then I am going to try the Elimination Diet again now that Mr Rockstar is more stable.

Health:

  • Exercise
  • iPad time
  • Medicines – including all natural supplements and prescription meds
  • Sleep – Any time he wakes up or falls asleep

What I Do With The Data

The app is does a nice job graphing each category.  It allows you to select average, max, min, last and graph it by daily, weekly, or monthly trends.  This is probably all you really need but the nerd in me wants the raw data.  In the app you can select “Report” and you have the option to email the raw data to yourself as a .csv file which can be opened in Excel.  I like to add all the problem behavior categories together and graph them in Excel to get a better picture of “bad” days vs “good” days:

 

Then I can start putting things that “changed” onto the graph:

 

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Another chart I make is Hyperactivity plus Activity Level:

 

 

 

 

 

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I can see the Ritalin and sleep aid did help lower Mr Rockstar’s activity level to more normal and this seems to correlate with better behavior the last few weeks.  I can also see there is a trend on the Behavioral Chart of a few good days, a few ok days, a few bad days, a few ok days, a few good days, etc.  Looks like Mr Rockstar has a 8-12 day cycle with some weeks the bad days being worse than others.

The data also shows when Mr Rockstar quit taking his drug induced nap as we weaned him off the Intuniv as well as how his sleep has stabilized the past few weeks switching to Ritalin and a sleep aid.  We still are having occasional night waking but never for long.

 

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Looking at this data makes me wish I started collecting it sooner!  I start wondering what his yearly/seasonal cycles look like.  If my memory is correct spring and fall are Mr Rockstar’s worst times of year.  Also, it makes me wonder what the data would have shown before he started any medications 6 months ago.  Don’t be wondering all this for years to come!  Start collecting data now if you have a special needs child so you can see what works and get hope that maybe you are making some improvement.

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