Early diagnosis and intervention are crucial in addressing autism in children. But in India, there are only a dozen specialists for the nearly 14 million people affected by Autism Spectrum Disorder. Dr. Vikram Dua and Dr. Dan Goldowitz discussed their work growing the India-Canadian Autism Network (I-CAN), a collaborative venture between Canadian autism experts and leaders in research and services in India, funded in large part by India’s Divis Foundation.
Dr. Goldowitz is a medical genetics professor in UBC’s Faculty of Medicine and a member of the BC Children’s Hospital Research Institute and the Centre for Molecular Medicine and Therapeutics. Dr. Dua is a neurodevelopmental psychiatrist. He is a consultant at Queen Alexandra Center for Children, Vancouver Island Health Authority, and Treatment Research and Education for Autism and Developmental Disorders at Surrey Place, Toronto. Dr. Dua has academic appointments in Psychiatry at UBC and University of Toronto. He was born in Delhi, India.
The inaugural meeting of Indian and Canadian colleagues of I-CAN in Hyderabad (photo: Dan Goldowitz)
What is I-CAN’s vision?
Dr. Goldowitz: Vikk first laid the groundwork with a foundation assisting professionals in India in developing expertise to diagnose and treat kids diagnosed with autism and complex neurodevelopmental disabilities. After that, the “Three Musketeers” sharing the same passion emerged: the two of us with Dr. Lonnie Zwaigenbaum, a developmental pediatrician at the University of Alberta and co-director of their Autism Research Centre. The vision was to build capacity and improve early assessment and intervention in autism and foster research; all to improve the quality of life of autistic children, youth and adults in India. We’ll do this by building a collaborative global network that leverages Canadian and Indian expertise, current research and trends, and a collective understanding of local needs of parents and centres.
What are the main goals?
Dr. Goldowitz: Short-term, we’re focused on financial stability and short-term training: sending Canadians to India to work there and bringing individuals from India to work in Canadian labs and hospitals for three to six months to establish mutual understandings and lay the foundation for engagement over the coming years. The target is to train three to four professionals and build out from there. We also want to roll out programs from Canada-wide to India and deal with complex case how-tos – co-morbidities, ADHD, discoordination, ideation and cognition areas. Long-term we want to scale this all over India, and southeast Asia, to regions in need for these kinds of assistance, such as China and Vietnam.
Why do we need a multidisciplinary approach to addressing autism?
Dr. Dua: Autism is a complex syndrome which can impact diverse areas of functioning. Clinically, we achieve the best outcomes for autistic individuals who have input from medical, psychological, mental health, communication, behaviour and learning experts. In the ideal scenario, these multiple professionals operate in an interdisciplinary fashion to provide an integrated treatment plan.
Why create a network like I-CAN?
Dr. Goldowitz: We put a lot of resources towards building infrastructure – water, bridges and roads – in countries such as Africa and India. But what about expertise infrastructure? What about delivering the best care for kids with neurodevelopmental disorders? Canada has top-notch expertise. It makes sense to take that expertise abroad. An excellent example of this is Jessica Brian, a psychologist at Holland Bloorview/University of Toronto, who has pioneered an evidence-based intervention for the youngest children diagnosed with autism.
How does India benefit?
Dr. Dua: India has the perfect pivoting point. The country has the infrastructure and wonderfully trained individuals on par with the best in the business. But for all of India, there is a scarcity of specialists. One of the most important things we all agreed (at I-CAN’s recent symposium) is capacity-building. And with that capacity, we would focus on specific goals: early diagnosis and early evidence-based intervention – “the sooner the better” is the mantra. In North America, there has been much success in the diagnosis of autism to one year of age or younger. Currently, India is behind in the effort toward earlier diagnosis: not diagnosing til three or five years old or later.
Lunch break at the inaugural I-CAN meeting in India (photo: Dan Goldowitz)
How does Canada benefit?
Dr. Goldowitz: Beyond Gemütlichkeit, the good feeling from doing good deeds, is a vision that having access to huge numbers of individuals with autism serves as a significant pipeline for any research questions we might want to explore – whether issues about biomarkers for diagnosis, the genetics of autism, the role of the environment on autism, testing out interventions and early diagnostic tools. There’s a lot to gain from a very large population and data set.
What’s important to keep in mind about autism?
Dr. Dua: That it is complex and always changing. It evolves continuously through a lifetime and, as such, the needs and challenges vary widely. Autism as a term is also continuously evolving; how we now define autism is different from how we defined it 10 years ago, 20 years ago or 50 years ago. It is important in developing new services to keep this in mind, as the pace of change can sometimes be dramatic.
What are the big misconceptions about autism?
Dr. Goldowitz: That there is a “one description fits all” way to understand autism. Individuals fall across a spectrum of abilities. The autism community has done an incredible job destigmatizing the condition with the concept of neurodiversity, that we accept everybody and take them as individuals.
There’s also the issue of employability. We want individuals with autism to be contributing members of society so they feel fulfilled. Canada’s Dr. Margaret Clarke (Calgary-based pediatrician) and David Nicholas (Professor at the School of Social Work at the University of Calgary) have been doing wonderful things around that. An excellent example is a young man in Edmonton who is non-vebal; he has worked in a library and files books several times quicker than his more typically developing colleagues! We need to go with a strength-based approach and work with a person’s unique skills. We need to find a place for them in our communities and not marginalize them.
Trading Indian and Canadian perspectives over lunch in Hyderabad (photo: Dan Goldowitz)
What’s the key?
Dr. Goldowitz: We all realize that while the professional can only be with a child for about an hour or so a week, it’s the family who’s there 24/7. The more we can support the family, the more support we can supply for this kid. Train-the-trainer efforts are crucial so that trained professionals in India can then train the parents.