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“You don’t treat a label, you treat a person”: Dr. Suzanne Lewis takes a personalized approach to understanding autism

June 08, 2018
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For BC Children’s Hospital investigator Dr. Suzanne Lewis, the future of diagnosing and treating children with autism spectrum disorder (ASD) lies in the power of personalized medicine. In personalized medicine, patients receive therapies uniquely tailored to their biological and genetic makeup. It’s an individualized approach that, according to Dr. Lewis, may be the key to advancing care for ASD, a complex condition that varies greatly from child to child. 

Dr. Lewis is an investigator and Clinical Professor in the Provincial Programme for Medical Genetics at BC Children’s Hospital and Chief Medical Officer & Vice President of Research at the Pacific Autism Family Network. 

ASD is the most common neurological disorder in children, affecting an estimated 10,000 children in British Columbia alone.* Symptoms of ASD include trouble with communication and social interaction and repetitive interests and activities. People with ASD have a wide range of ability levels – some may not be able to speak or live independently, while others have more subtle challenges communicating and forming social relationships. Many families struggle to determine which treatment options are best for their child; while behavioral therapies and medications can help some children with ASD, some children do not show improvement with any intervention. 

Dr. Lewis talks about how she’s working to understand autism at the level of the individual patient and what her efforts mean for children affected by ASD and their caregivers. 

How are you using personalized medicine to improve care for ASD?

What we refer to as autism is likely a group of symptoms associated with many different underlying disorders, seen in many different forms. A personalized medicine approach is particularly promising for ASD because we see such a huge amount of variability in autism, in terms of the symptoms, causes and outcomes. Instead of treating the symptoms of “autism,” we want to treat what is causing each patient’s individual condition with targeted therapies.

Currently, we’re using a personalized medicine approach to understand and treat autism through an exciting project called Individualized Treatments for Autism Recovery using Genetic-Environment Targets (iTARGET) funded by Genome BC. 

In iTARGET, we’re going beyond the label “autism” to look at the individual from a whole body perspective. This is a Canada-wide study, and we’ll be contributing data from about 1,500 patients, most of whom were recruited through BC Children’s Hospital. We’re examining how systems in the body work by looking at all the different “-omes,” including the phenome, genome, the microbiome, proteome and the metabolome (See box at right for more information.)

Understanding these different bodily systems and how they interact will help us understand what causes ASD in different people. We’re working towards identifying different subtypes of autism, just like we’re able to recognize many different subtypes of cancer, epilepsy and other conditions. This effort will help us diagnose different types of autism earlier in life when interventions are most effective, and develop personalized behavioral treatments and medical therapies tailored to the specific type of autism each child has. We want to be able to give families evidence-based guidance to help them navigate treatment decisions, so children can have the best possible outcomes. 

In addition to your scientific research, you work directly with people with ASD and their families. Can you talk about why your research is important from their perspective?

Our personalized approach to ASD means a lot to families because we’re looking at their children as individuals and seeking therapies that are specifically tailored to them. We want to move beyond a one-size-fits-all model of approaching autism diagnosis and treatment, and work with families to help them achieve the results that are most meaningful to them. 

Scientists have struggled to make major advancements in autism research because ASD is so variable and can have so many different causes. I know this can be frustrating for families. We’re working to understand autism in a holistic way that takes the perspectives and needs of families into account and pursues treatments that help children reach their fullest potential. 

You’re also working on a project called Autism Community Connects project, which is funded by a REACH grant from the Michael Smith Foundation for Health Research. How will this help families effected by autism?

Autism Community Connects is an effort to a build a bridge between the grassroots autism community and the scientific community. This project is a collaboration with the Health Design Lab at Emily Carr University as well as with the Pacific Autism Family Network, which provides direct multidisciplinary support services to people with ASD and their families.

We’re working with the Health Design Lab to develop a web platform to facilitate knowledge translation and help families easily access and learn about evidence-based research and study opportunities. We’ve also been able to mobilize workshops to engage individuals and families at sites around the province.

We want to help people with ASD and their families learn about the science behind autism and the latest research developments, and we also want to learn from them. We want to hear their ideas and find out what areas of research they connect with and find meaningful. This will help us pursue research that addresses the most pressing needs of families and has the maximum impact on the lives of children.  

If there is one thing about your research you’d like to share with the general public, what would it be? 

The importance of looking at the individual person, not just the label. Too often people look at children with ASD and focus on weakness and disability. In fact, children with ASD are complex individuals who have amazing strengths and talents that should be celebrated. 

As a clinician who works with children with ASD, it’s very important for me to move beyond symptomatic labels, because you don’t treat a label, you treat a person; moreover, you don’t just treat the symptom, but its cause. Getting to know individual children and their families is the great privilege of my clinical work. As a researcher, I believe that looking at autism as complex and multi-faceted groups of disorders will be key to solving the puzzle of what autism is and how we can best help children with ASD live the best possible lives. 

*  http://pacificautismfamily.com/about-asd/