Dr Susan Crawford has become an expert in movement skills to help her son and others who are debilitated by catatonia, says Dan Buckley
WHEN Susan Crawford’s son, Tomás, was three years old, his autism, diagnosed a year earlier, began to show itself in a variety of ways.
“I realised he had difficulties in the area of movement skills,” she says.
Tomás had problems with running, catching, throwing, and jumping — all the things that children do every day. Finer movements, such as holding a pen or fork and tying buttons and zips, were also problematic.
But Susan is an expert on the benefits of physical activity and realised that these motor problems were inherent to autism.
“When he was diagnosed, he had a typical profile. He had words and then he lost them — he regressed. I was working at Temple Street Children’s Hospital, in Dublin, so he was diagnosed very quickly and that early intervention made a huge difference.”
For the next 14 years, she helped him with swimming, running, and workouts in the gym. A track was installed at the family home in Miltown Malbay, Co Clare. By his mid-teens, Tomás was not only fitter, but more sociable. By the age of 17, he was able to comfortably sit in company without exhibiting stereotypical autistic mannerisms and tics.
His future looked bright until, shortly after leaving school, Tomás began to regress, developing catatonia, a rare condition usually associated with schizophrenia, but also seriously affecting the quality of life of people on the autism spectrum.
“He was brilliant and super, very well able to manage,” says Susan. “He could cook and do lots of things for himself. Now, he freezes and becomes very rigid and has to be prompted to complete everyday activities.”
Aged 22, Tomás has to be accompanied everywhere. He attends the Brothers of Charity day service in Miltown Malbay, where he needs one-to-one support at all times.
“He does woodwork with support, using only hand tools for safety. He also loves painting and even makes his own frames, stretching the canvas himself,” says Susan, a researcher in fundamental movement skills for children and adults with autism. She has been promoting education for those with the condition, as part of her work as a lecturer in sports studies and physical education at University College Cork.
She commutes from Clare to Cork four days a week. She completed her PhD in fundamental movement skills and social responsiveness for children with autism at the University of Limerick in 2008.
“In 2015, I was awarded a Fullbright scholarship and I took Tomás to San Francisco with me,” she says. “His catatonia was not nearly as marked as it is now, so he was able to come.”
Susan is not about to give up, though, convinced that a combination of medicine and physical activity will help Tomás, and others on the autism spectrum, especially those with catatonia.
She has organised a conference at the Mardyke Arena, Cork, tomorrow, to address the physical health of people with autism. The Interdisciplinary Collaborative Autism Conference will address the importance of developing fundamental movement skills and also address health-related issues common to children and adults on the autism spectrum.
Lectures will be combined with workshops to provide expertise to parents, educators, practitioners, and employees who live and work in the world of autism.
Judith Miles, of the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri, will deliver the opening address, with emphasis on autism-related catatonia. David Sugden, an expert in motor impairment, will outline how movement programmes benefit all aspects of development and health, while Dr Crawford will speak about fundamental movement skills for people with autism.
She will also provide details of the Get Autism Active programme, which will be launched on the day. This programme aims to enhance the movement skills and quality of life of people with autism. It is is being rolled out in three centres in Cork city, for children and adults on the spectrum.
Susan will return to the US, later this year, to collaborate with the University of San Francisco and with San Jose State University, in California, to roll out the Get Autism Active programme Stateside.
Susan initiated the Get Autism Active programme in 2015, during her Fulbright-TechImpact Scholarship to the University of San Francisco. She has also completed a new textbook, Fundamental Movement Skill Acquisition for Children and Adults with Autism.
The book, commissioned by Jessica Kingsley Publishers and due for release in July, was written not just for medical practitioners, but also for parents. For all Susan’s qualifications, the skill she treasures most is far from the corridors of academia. “Parenting is the greatest skill of all,” she says. “I firmly believe that.”
The Get Autism Active Conference takes place tomorrow April 14 in the Mardyke Arena, in Cork, from 9am to 5pm. The conference will look at autism from movement and health and wellbeing perspectives, and is aimed at parents, educators, and practitioners. Tickets cost €35-€50; getautismactive.com/events