Obituary - Professor Anne O'Hare, leading paediatric neurologist
Obituary – Professor Anne O’Hare, leading paediatric neurologist
Written by Sinéad Rhodes and Paul Vallely
Professor Anne O’Hare was a pioneer and visionary in the field of the assessment and diagnosis of childhood learning difficulties and neuro-developmental conditions, especially Autism Spectrum Disorder. She has been described as “the champion of many children”.
A leader in her field, Professor O’Hare was a developmental paediatrician with extensive clinical experience in neuro-disability, neuroscience and child protection. Her research interests encompassed the development of speech, language, communication, motor skills and learning. She broke new ground in the early identification and support of children and young people with developmental disabilities, helping reduce waiting times for the assessment and diagnosis of people with autism. And she did this with a fierce passion for social justice – and an ironic sense of mischievous fun.
Anne O’Hare was at the forefront of the development of effective assessment, diagnosis and interventions for children and young people – publishing Scotland’s guidelines on the topic several years before NICE did the same for England and Wales. Consulted nationally and internationally by colleagues who saw her as “a fountain of knowledge” on many areas of childhood development and disability, she helped Scotland lead the way internationally on developments in community understanding, clinical practice, and interagency working for the benefit of autistic children, young people and adults.
At the memorial celebration of her life, Professor Siddharthan Chandran, Dean of Clinical Medicine at the University of Edinburgh said: “Anne was absolutely a visionary. She was way ahead of the curve in recognising that if you really want to do something impactful and sustainable, you really have to start by working with people living with neurodevelopmental challenges – and listen to them and their families.”
That might now sound a common-sense orthodoxy, but Anne O’Hare had pioneered the approach from early in her career at a time where research was most often conducted ‘to’, rather than ‘with’, people. Professor Chandran added:
“At the root of future success, is working with people living with these conditions, so that research is shaped and influenced by them… Anne was way, way ahead in doing that.”
As founding Director of the SMRC Research Centre for Learning Difficulties at the University of Edinburgh, Anne brought to bear her extensive clinical expertise, academic knowledge, and a deep empathic understanding, to elevate patients’ perspectives so that they became central to all aspects of the research process.
Early on she declared: “It is vital that people with learning difficulties are given a voice and are involved in research design from the outset”. She declared that in her extensive experience “parents were always more accurate in the early years of picking up autism traits than clinicians”.
What made Anne O’Hare special was that she worked tirelessly as both a doctor and as an academic – and excelled at both disciplines. What made her distinct was that her clinical and research work were inextricably linked. Excelling in both she firmly believed that research work should closely inform and support clinical practice. Her research was a practical way of improving care for children with neurodevelopmental problems.
What was evident from her research, said a collaborator on an SMRC project, Katherine Cowan, was that “her motivation wasn’t her own research interests, but rather her innate sense of fairness and genuine belief that research should focus on the things that matter to people on the ground.”
Testimony of this approach was given at Anne’s memorial service by Susan Hardman Moore, the mother of an autistic child, who said: “Anne made a difference to so many young lives. Her common sense and wisdom, over the years, were a life-changer…We count ourselves fortunate to have been one of a whole generation of families that she looked after in Edinburgh.”
Professor Hardman Moore’s autistic son, Rannoch, told the hundreds of people gathered at Anne’s memorial: “Anne was very smiley, warm-hearted, kind, and helpful – and was such an important person in my life. Anne helped me stay calm and be confident. What a tragedy Anne isn't with us anymore.”
Professor Chandran, spoke of Anne’s “imagination, ingenuity and curiosity”. This, he said, “when allied to a very sharp intellect, albeit gently carried, and her immense generosity, kindness and humanity, makes for a very very powerful combination”.
“It was that cocktail that underpinned her ability to build enduring, strong, meaningful partnerships that cut across borders, boundaries and disciplines,” he added. “This is all very fashionable now, but Anne was doing this when nobody else had really thought about that. Her legacy, in terms of driving and shaping the research agenda, will endure in many ways and grow.”
Other colleagues praised her collaborative, un-hierarchical style, with one describing her as “the most welcoming and unpretentious professor I have ever known.”
Despite tirelessly pursuing her own research Anne O’Hare always found time to support others. An inspirational role model and mentor, she was generous with her time, thoughts and money. “She shared her ideas so openly and selflessly – which you don’t always see in academics,” one colleague said.
Sir John Savill – Regius Professor of Medical Science at the University of Edinburgh – offers a fitting conclusion: “Anne was a superb colleague, a real one off, and it was an absolute privilege to work with her.”