Validating the Austin Assessment
I first had the idea for the Austin Assessment after I watched Austin, an eight-year-old with cerebral visual impairment (CVI), struggle to match playing cards — and I knew instinctively that it would work.
This was because, like Austin and many others around the world (both adults and children), I have CVI, and this affects my ability to visually process the world around me. My eyes are fine, but due to a brain injury, parts of my visual brain don’t work that well, especially when they are overwhelmed with too much stimuli to process. This is why I find cluttered, noisy, and busy environments challenging.
As I watched Austin struggle to find a match in the small pile of cards on the table in front of him, I could see it was his cerebral visual impairments (the exact same ones I have) that were stopping him from doing what should have been a simple task for an eight-year-old. I wondered if I would have trouble doing the same activity, so later that day, I tested myself.
Sure enough, I was very slow and unable to match all the pairs of cards on the table in front of me. I then tested my two children and my husband, and they had no difficulty in finding the pairs. Not only were they able to find them easily, they also did it incredibly fast. I couldn’t visually keep up with their movements.
But it wasn’t enough for me to intuitively know that the Austin Assessment worked. I also had to show this through research. So, in 2018, I started a journey to validate the Austin Assessment. I had no idea this journey would take over five years, include four separate research projects, involve assessments of over 900 children, and take me the length and breadth of New Zealand. During all of this, I got to meet so many amazing children and their parents, and I saw first-hand over and over again how the Austin Assessment helped people better understand CVI-related visual issues.
There were many ups and downs throughout the journey, and I had to overcome a number of challenges. Firstly, I had to find the children with CVI-related visual issues, knowing the majority of them were yet to be identified — ironically the very reason the Austin Assessment was needed. I then had to find an already-validated assessment tool that was similar to the Austin Assessment to compare it with — even though I knew there was nothing like it out there! But knowing how important it is to have an effective screening tool for CVI-related visual issues, I persisted and found ways to overcome these challenges.
Of course, I didn’t actually do this on my own! I had support from so many amazing people — from those in the international CVI community to my lovely research assistants, my stats guru who crunched the numbers, the digital wizards who brought the Austin playing card assessment into the 21st century and of course, the children. The children who trusted me and let me ‘try’ this assessment on them. They all helped me show that the Austin Assessment really does work.
So this wasn’t really my journey at all. The Austin Assessment was created by the CVI community for the CVI community, and this is just the beginning. My hope is that it will help us identify the 3.4% of children who have CVI-related visual issues, so they can receive the support they need. I also know the CVI community is going to help continue to build the Austin Assessment, especially as our collective knowledge of CVI continues to grow.