About us

Learn about the origins of the Austin Assessment and the work of the Austin McDowell Foundation to raise awareness and funds to help identify and support children with cerebral visual impairment (CVI) all around the world.
Nicola watching Austin play the Austin Assessment on a tablet.

Origins of the Austin Assessment

In 2016 Nicola was working as a Specialist Teacher for children who are blind and low vision. One of the children she was working with was Austin. He was 8 years old and had cerebral palsy, with reduced visual acuity and CVI. 

One day, Austin and Nicola were playing a warm-up maths game where Austin had to match two playing cards together so that they would add up to 8. Austin was great at addition, and it was meant to be fun, not difficult. But he found it really difficult. 

Nicola was confused. She knew Austin was more than capable of doing a simple sum. His struggle wasn’t due to a problem with maths. Nicola realised, suddenly, that it was a visual problem.

Austin couldn’t add up the playing cards because he couldn’t see them.

His CVI was stopping him being able to match the pairs.

Nicola had already been thinking of a way to identify CVI in children, and this gave her an idea. Maybe a simple, fun, card matching game might help identify children with difficulties related to CVI.  

Six years, a global pandemic, four research projects and over 900 children assessed later, Nicola had her evidence, it worked!

Nicola named the game after Austin, who showed her a way that she could help children all over the world, and as a reminder that the real experts in CVI are those who have it.

To learn more about the development of the Austin Assessment App, please watch the Our Story videos on the News page of the website.

Image of Nichola when she was at high school. She is staring at the camera wearing school uniform and has a sport medal hanging from her neck

Nicola’s story, in her own words

I have a ‘before and after’ CVI, but most children with CVI don’t. Like me, many blame themselves for the difficulties they experience. Like me, many isolate themselves. Like me, many become lonely and sad. Like me, when the condition is understood and suitable support is provided, lives are transformed.

At least one child in every class in every school is likely to be struggling due to unknown and unsupported cerebral visual impairment (CVI). I was one of those kids. I was socially inept, regularly offending and annoying people, I couldn’t study or follow lessons, and assumed it must all be my fault. This, I know, is how many other kids with CVI feel.

Most children with CVI will have had it since birth, but mine was acquired due to a brain injury when I was sixteen. 

In June 1996, I was dreaming of an international sporting career in both swimming and netball. I had just competed at the Atlanta Olympics National Swimming trials in New Zealand, winning medals and posting a time not too far off the Olympic qualifying time in my favourite event, the 100m breaststroke. I had also just been picked for town and provincial representative netball teams. The world was at my feet, and I was shooting for the stars, with the 2000 Olympics in Sydney firmly in my sights. 

13 June 1996 is a day I both can hardly remember and will never forget. It was the day my world was completely torn apart. I suffered a brain haemorrhage while swimming training. I should have died. I was lucky those first on the scene knew what to do. I underwent eight hours of surgery and spent 10 days in a drug-induced coma. Through sheer determination, I walked out of hospital three weeks later, and I felt largely unaffected by this catastrophic event. The only difference was that I no longer had vision on my right side, called a right hemianopia.

I went back to school looking to pick everything up where I left off, but something was different. Schoolwork had become almost impossible. I was an ‘A’ grade student only a few weeks before; why was it suddenly so difficult? I couldn’t have missed that much! Moving through the corridors between classes frightened me. What was that all about? That was never an issue before. 

And then there was the issue of my friends. I had enjoyed a great social life, but now everything was more difficult, and I didn’t understand why. I started spending more and more time on my own in my bedroom. I became increasingly withdrawn and lonely. Not unexpectedly, I suffered from depression. 

Fast-forward 17 years to 2013. I managed, through determination and relentless hard work, to carve out a life for myself. I was married with two young children and a career as a teacher specialising in education and rehabilitation for children who are blind and low vision. January 2013 brought another unexpected life-changing event. At a work conference I heard a Professor Gordon Dutton from Scotland describing a vision impairment called cerebral visual impairment. Listening to him, I realised he was describing me. I must have CVI, I thought. It explained everything going back to 1996. 

My CVI was confirmed. Understanding the medical condition behind my difficulties meant I knew what changes I needed to make, so that I could learn more effectively, and enjoy the company of other people, not get so stressed when out and about, and do more for myself. 

I have a ‘before and after’ CVI, but most children with CVI don’t. Like me, many blame themselves for the difficulties they experience. Like me, many isolate themselves. Like me, many become lonely and sad. Like me, when the condition is understood and suitable support is provided, lives are transformed. 

My life is dedicated to finding and helping those children, so they can get that support, because I know what it is like and how difficult it is. I don’t want any child to feel how I felt.

Since learning of my CVI I have completed a master’s degree, a PhD, and I am now undertaking post-doctoral research whilst being a Senior Lecturer, all in the field of CVI. I will continue to conduct research in this area for the rest of my life. I am a founder member of the international charity CVI Scotland and share my story through talks, blogs and webinars around the world to raise awareness.

The Austin McDowell Foundation

The Austin McDowell Foundation was established to provide education and support for those affected by brain-based visual issues. It aims to help improve quality of life for people with CVI through research and by providing access to simple and effective screening assessment tools.

The Foundation is working with leaders in the CVI field internationally to find ways to improve access to further assessment and diagnosis. The Foundation cannot do this essential work without generous support, and welcomes your donations.

Your support will make a huge difference in transforming children’s lives.
Make a donation
Profile image of Nichola

Nicola McDowell

Foundation Trustee
Nicola is the founder and creator of the Austin Assessment, and a Senior Lecturer in the Institute of Education, Massey University.

Her research interests include understanding and supporting children and young people who have cerebral visual impairment, empowerment of children and their parents/caregivers and equity in education.

She is a renowned international speaker on cerebral visual impairment, sharing both her research and personal experience with a focus on improving outcomes for others with the condition.
Helen's profile picture

Helen St Clair Tracy

Foundation Trustee
Helen is the Founder and Chair of the Board of Trustees of the international CVI charity CVI Scotland.

With CVI expert Professor Gordon Dutton, Helen is one of the two lead writers for the CVI Scotland website, which is used in nearly every country in the world.

Helen is also an Honorary Lecturer of the Medical School of the University of St Andrews. Helen's son has CVI and both their lives were transformed with understanding of the condition. Her passion is getting support to people affected by CVI.
Philippa's profile picture

Philippa Butler

Foundation Trustee
Philippa is a Lecturer in the Institute of Education, Massey University.

Her teaching interests are in research methodology and methods, and her research interests include ethnic group identifications and issues of equity in education.

She is an expert in qualitative, quantitative and mixed methods research and is an experienced and accomplished writer.
Mari's profile picture

Mari Booysen

Foundation Trustee
Mari is Senior Manager at the Massey University Foundation, and an accomplished and self-motivated leader with more than 20 years of experience in the tertiary sector, specifically in philanthropy, fundraising and alumni relations, relationship management and stakeholder engagement.

Before immigrating to New Zealand in 2019, she was the Director of the Advancement and Partnerships Office (APO) at the Tshwane University of Technology.
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Alexa Patterson

Foundation Trustee
Alexa is a business analyst, digital product specialist, and digital accessibility advocate.

At all times, she’s value-oriented and believes there’s no point in delivering a product if it’s not delivering value.

She has a double major in Business and International Studies from the American University in Washington, DC, and has managed IT projects for a range of New Zealand organisations.

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