Pioneering direction in Down syndrome research

Paul Mayne // Western NewsEducation professor Nicole Neil is one of a handful of North American researchers to pioneer the use of Applied Behaviour Analysis (ABA) for children with Down syndrome.

As an undergraduate student, Nicole Neil helped change the life of a young boy with autism.

She found textbook concepts came to life as she worked with him. Now an Education professor at Western, she remembers real life intersecting with classroom learning: “I was directly applying what I had learned about behavioural intervention and psychology from class in real life,” she said.

“After a session or two, he was able to tie shoelaces on his own, or make himself a sandwich. You could see these skills, that we take for granted, developing right in front of your eyes,” she said.

Much of the work she did with the boy was guided by an early life intervention therapy known as Applied Behaviour Analysis (ABA), which uses knowledge of how we learn and behave to help mitigate developmental disabilities. It’s been shown to be effective among children along the autism spectrum.

Now, Neil is one of a handful of North American researchers to pioneer the use of ABA for children with Down syndrome. In Ontario, one of every 750 babies is born with this genetic disorder, which can lead to a variety of developmental disabilities that (much like autism) can include social isolation, self-injury and attention deficits.

Neil, who is also a Board Certified Behaviour Analyst, is working with several families in London and across Ontario. As with the boy from her undergraduate experience, Neil is once again applying research concepts from books to real life – a textbook example of shaping lives. In turn, her clinical work is helping shape her research.

“The first thing parents of children with Down syndrome ask me when I mention ABA is: ‘what is it?’” She added she is “simply taking the already-proven principles of ABA and applying them to under-represented populations.”

A typical ABA session begins with an interaction between a therapist and a child, whose responses and behaviours reflect personality traits, skill-levels, needs and interests. The therapist then analyzes these behaviours and applies therapies to help improve the child’s quality of life.

Its flexibility makes ABA one of the most effective approaches available for children with autism.

“There is simply a greater awareness around the needs of children with autism,” Neil said. As a result, parents are often more familiar with the most effective treatment options than are parents of children with Down syndrome.

One of ABA’s strengths is its customizability: instead of the typical one-size-fits-all approach, the tool allows Neil to tailor intervention strategies specific to each child. For example, she can tweak the intensity of each intervention, the pace at which it’s delivered and the number of sessions required weekly. These interventions help improve a variety of skills, such as language and social communication.

Neil’s pioneering work with parents, children and therapists will be critical in raising awareness of ABA’s effectiveness. A useful outcome, she said, would be policy changes at a provincial level, including funding for ABA sessions for people with developmental disabilities. Those lacking community support and effective intervention strategies often end up in inpatient units, for example, which costs Ontario taxpayers more than $1,500 a day.

Moving beyond Down syndrome and autism, she sees a future in which ABA is widely applied, from helping address behavioural issues by senior citizens in nursing homes to helping students address pre-exam jitters.