Measuring Progress

I recently spoke to a mom who told me that her child is really flourishing. He is using more and more spontaneous language every day and they are delighted to hear him communicating with them.

When I asked to what they attributed his sudden developmental leap she gave me a list of recent changes to their home program. They'd started him on a multi-vitamin a few weeks ago and two other supplements recommended by their DAN! doctor. They had also managed to finally eliminate refined sugar from his diet (after getting Grandma on-board!) and had adjusted their own communicative styles to include fewer questions and more statements.

All these changes within the last month! What was working? When I asked if she'd been keeping detailed notes of his progress she told me she'd meant to but had been way too busy to get around to note taking. Sound familiar?

Knowing What's Working
If you are running a home program for your child with autism then undoubtedly you are using more than one approach. You may be working with your child through play or structured teaching in addition to trying diets, supplements and bio-medical treatments. You may be doing auditory training or some form of vision therapy. With so many things happening each day it can be hard to know exactly what is working and what is not. Many parents tell me, "something seems to be working! We're not sure what, so we just keep doing it all!"

Relate to Autism just launched an innovative online tool to help you focus on those activities that are helping your child the most - the Growth through Play System (GPS) Tracker. The GPS Tracker makes it easy to daily track what you are doing and how your child is responding. The GPS Tracker is fully customizable so you can track exactly what is important to you and direct your program with data-driven decisions -- no more guessing! Quickly input important information with just a few clicks and minimal typing. After just a few days you'll have enough information to run any of a number of easy to read, visual, reports so you can see patterns in your child's growth in relation to what you are trying. Correlate changes in your child's interactive attention span with changes in diet or supplements or therapy regimen. Print out a report on all the games played by you and your team members for review at team meetings. See a whole week of activity and information with just one mouse click.

What to Track?
As we have been developing the GPS Tracker, we've had to wrestle with the question of what to track. There are so many things you could record about your child every day. But we know your time is precious and having too much data can be just as unproductive as not having any. What are the essential things your child does that tell us she or he is developing socially? More words, more gestures, facial expressions, play with other children, less hitting his sister? Every child is so different and we're working on different goals with each child so how so we develop a tracking tool that will work for everyone running a home program for a child with autism?

What the Latest Research Says
I turned to the published research literature for an answer. What measures have researchers used to measure progress in children with autism? Most of the research stemming from behavioral models of autism has measured things like, IQ, school placement or scores on various parent-report questionnaires of "adaptive behavior" or "expressive language". These scores tell us nothing about the child's ability to engage in reciprocal interaction with another person. Nor is there any evidence that these scores are in any way are related to that child's ability to make friends with other kids.

The literature from developmental models was more helpful. These studies have measured some very specific social behaviors and then looked at the longer term effects for a child of acquiring these behaviors. There are surprisingly few "randomized control trials" of autism treatments - these types of studies are considered the best example of the scientific method and the strongest test of any treatment approach. One of these studies, published last year by researchers at the University of California (Kasari et al, 2008), found that the best predictors of expressive language growth 12 months after a 6 week treatment program were:

• child-initiated and responsive joint attention behaviors (specific non-verbal communications)
• level of play type (there is a hierarchy of sophistication of play type from conventional use of objects all the way through to dramatic and fantasy play)
• duration of child-initiated episodes of engagement, i.e., the duration of time that your child will stay engaged in reciprocal interaction with you, when s/he initiates the interaction.

Putting Research into Practice
Now we're talking! How long your child will stay connected with you and the sophistication of play and communication during that interaction sound much more interesting than how your child scores on an IQ test or a standardized questionnaire! It is these things that matter on a day to day basis, matter to parents and are essential to a child being able to develop peer friendships.

These measures also made sense to me after ten years of using The Son-Rise Program with children with autism. One of the guiding principles of The Son-Rise Program is that through spending more and more time engaged with another person, children with autism will learn what they need to know about social interaction. The Son-Rise Program is the only approach that makes duration of episodes of engagement (or "interactive attention span") such a primary focus of treatment. I have seen the power of this approach with hundreds of children over the years.

So if you only keep track of ONE THING every day, keep track of how much time your child is spending engaged with you (in contrast to how much time s/he is unavailable for interaction). If this is generally increasing then you're on the right track - keep going! If not, then it's time to re-vamp your approach.

The GPS Tracker will help you easily record how much time your child spends engaged with you and then calculate his or her average proportion of time spent engaged each day. You can then display this information on an easy to read chart and compare it to other factors - such as food, supplements or even the emotional state of your team. We have found this type of information invaluable in guiding parents.

Facilitating your child's social development is not a case of "work more and work harder". It's about maximizing the time you already spend together to:

1. Keep your child actively engaged with you for longer durations and
2. Focusing on key social developmental milestones that have been shown to impact wider areas of development

Next Steps:
1. View samples of the GPS reports by going to http://www.relatetoautism.com/samples
2. Start keeping track of how much time your child is spending engaged with another person. Become a relate to autism member and access the GPS Tracker. Visit: http://www.relatetoautism.com/join
3. Customize your tracking system and learn how to use it. Between now and December 31, 2009, we'll help parents who would like to customize their tracking system to include their child's foods, supplements and medications get started. Simply send an Excel spreadsheet of the foods, supplements and medications to support@relatetoautism.com and we'll initialize your GPS Tracker for you. We'll then schedule a twenty minute phone session to walk you through the tracker and answer any of your questions.
4. Discover which joint attention and play skills to focus on by completing the extensive online assessment, the GPS Starter.
5. Take a quick tour of the GPS Tracker
http://www.youtube.com/watch?v=NQi95o1MZNw