Q: Could you please explain what you mean, in the context of your report, by the ‘global burden of Autism Spectrum Disorder’?
Kerim Munir: The global burden of autism spectrum disorder is a metric to measure the burden of illness and to compare the different disorders in terms of mortality rates, years lived with disability, and years lost due to premature death.
Autism, as well as intellectual disabilities, scored pretty high on this metric, in particular in terms of the years of disability lived. That’s because you get diagnosed with autism at an early age and the condition affects you over your entire lifespan. The metric also helps in calculating the costs associated with these conditions.
Q: Why do you think autism ranks as one of the world’s most pressing healthcare issues?
Kerim Munir: Eighty-three per cent of individuals with autism suffer from another comorbid condition, either a physical disability, genetic, metabolic, or some other type of mental health condition. Thus, individuals with autism have higher rates of seizures and genetic disorders, sensory problem, self-injurious behavior and severe episodes of anxiety and mood disturbances. Overall, this makes autism an incredibly devastating condition.
As the saying goes, ‘if you’ve seen one person with autism, then you’ve only seen one person with autism.’ This is due to the fact that each person is truly unique. For instance, an individual suffering from autism but with more subtle social communication difficulties and no co-occurring intellectual disability also require supports and their condition can often be missed and their needs can be neglected. It is important to identify autism in all contexts and cultures early on.
Q: What do you find rewarding about your research?
Kerim Munir: I think that working with individuals with autism is important, but what is truly satisfying is also working with their families and communities to try to find the right solution.
When you see an individual with autism not doing so well or being unhappy, it is due to the fact that the environment failed to adapt to their needs as opposed to them adapting to the environment, which is sometimes very difficult.
I always tell families that it will take us time. A broken leg doesn’t heal overnight. It will take us time to find the solution, sometimes it takes months, or longer. But when we do reach a result, it is the most satisfying thing.
Q: Let’s discuss the issue of the prevalence of ASD. Can you discuss some of the challenges in measuring the prevalence of ASD?
Kerim Munir: There’ve been very few comprehensive studies of autism spectrum disorder prevalence. It’s hard to estimate, particularly when it comes to younger kids, because the diagnosis of autism is made through behavioral questionnaires, or observations rather than biological markers. There is a need for better precision in establishing whether autism is present or absent.
It is essential to do a better job in identifying kids with developmental disabilities through various developmental screenings, as well as autism checklist questionnaires. But we cannot do a satisfactory job if we just tease out autism and leave the remaining associated problems intact, and I think that is a problem. And I believe that the World Health Organization was quite right, in their World Assembly Resolution in May 2013, to link these autism and other neurodevelopmental conditions together to make sure that all children who are developmentally experiencing some form of delay get very early identification and early services, based on the resources of each country.
Q: Can you explain what an early intervention could accomplish?
Kerim Munir: We now have evidence that if you identify kids with autism very early and you intervene, their condition actually improves. These are very positive findings. And that’s why I think a number of states in America have passed legislation to develop very early, intensive behavioral interventions, not only through schools, but through actual medical insurance coverage programs, that are providing what we call applied behavioral analysis treatment for the kids at home and on weekends. That is making a huge difference.
Q: What is your assessment of the situation here in Qatar, regarding Autism?
Kerim Munir: Qatar has done a great deal since 2007 when it first proposed the Autism Awareness Day that has been endorsed worldwide. Now we have buildings lit up in blue and ribbons and every ministry of health around the world is celebrating Autism Awareness Day on April 2. Second, Qatar sponsored a panel at the UN to discuss the issues of social inclusion in autism spectrum disorders and neurodevelopmental disabilities. These are very commendable actions on the part of Qatar administration on a global level, to promote autism awareness and social inclusion.
Qatar has also sponsored the World Innovation Summit for Health Forum on autism and I expect Qatar to contribute further to improving the outcome and also establishing other types of pilot programs.
Q: What impact do you hope your research will have?
Kerim Munir: I hope that we can learn from the challenges faced in high-income countries to create opportunities for actions in low and middle-income countries.
This is especially important because childhood mortality is diminishing worldwide. It’s incredibly gratifying. Many of the countries in sub-Saharan Arica for example have had very significant declines in their childhood mortality rates in the last 5 or 6 years. And life expectancy is also increasing. Autism is a lifespan condition, so its global impact is going to increase as well. Although it would be difficult to estimate the cost of autism worldwide, one recent JAMA Pediatrics article projected the cost at 150 to 350 billion US dollars, which could increase to 1 trillion USD by 2020.
I also believe that the focus on autism brings tremendous added value in our understanding of child development and it is an important contribution to the inclusion process. I think that the biggest impact is our contribution to a more participatory and better society.