Message from the INSAR President - December 2017
Wednesday, December 27, 2017
Posted by: John Aliberti
Last month the INSAR Board met in Washington DC to review our Mission Statement and 7 Strategic Initiatives. The Board brought these to the front of our minds to help us focus on our priorities and provide a benchmark to measure if INSAR is doing what we want it to do. So here are the updated 7 Strategic Initiatives, introduced by previous INSAR presidents over the past 10 years, and tweaked and refined each year so that hopefully we are not overlooking anything important:
Mission Statement: To promote the highest quality research in order to
improve the lives of people affected by autism.
1 - Setting the Bar:Increase the quality, diversity and relevance of research promoted through annual meetings, journal, educational and other year-round activities.
This one is at the very top of the list because ultimately we are a research organization, and we exist to always be raising the bar, to ensure autism research is going deeper and is always improving. In this way INSAR is different to other autism charities that don’t exclusively focus on research but that have a clinical or service-based focus too. Those of you who attend the INSAR Annual Meeting know how cutting edge this is in scientific terms. The size of the meeting is large enough to create a buzz of excitement, whilst being small enough to find colleagues to chat with, to exchange latest findings and ideas. The INSAR journal publishes a selection of these new studies, to ensure data is disseminated, as do other high quality autism research journals.
2 - Interdisciplinary and Translational:Cultivate interdisciplinary and translational research, public-private partnerships, and relationships with industry.
Autism has to be understood at multiple levels, from genes to behavior, and has to go from the experimental laboratory bench to reach the autism community, and be translated and implemented through partners working in a range of sectors. If we lose sight of this priority, then the research just sits in specialist scientific journals and never leads to anything helpful for autistic people or their families. INSAR is actively bringing together scientists from sister-disciplines to work at the interface of different sciences, in fields like imaging-genetics, neuroendocrinology, or social neuroscience, with scientists figuring out how to integrate complex data sets to make novel discoveries.
3 - Diverse and Global:Represent and serve a diverse and global community.
The clue is in our name: I for international. We know autism is worldwide, and a major concern is that the majority of autism research is still only being conducted in high-income countries, mostly in the Western world. The risk if this continues is that what we learn from autism research is heavily biased in cultural terms. For this reason, INSAR is committed to finding ways to increase autism research in middle- and low-income countries, and in non-Western populations. And to ensure that the diversity that is autism is all part of who we research. This includes those who are the minimally-verbal to the hyperverbal, those who are gender-binary to those who identify as gender non-binary, those who are young toddlers to autistic senior citizens, and those with additional learning difficulties through to those who are gifted in intelligence and show
4 - Next Generation:Foster opportunities for leadership and career development for a diverse next generation of autism researchers.
This is always important, to ensure that the funding for autism research does not just go to the same labs that are already well established, creating barriers for the next generation of PIs. Science progresses through ‘disruptive innovation’, with often younger scientists challenging existing theories, data, and ways of thinking. In the process, science may overthrow old frameworks that are too constraining, or find counter-evidence, leading old theories to be modified or even refuted. It’s what makes science different to religion, in that we are constantly critical of our own ideas and inviting other, often younger scientists to criticize and challenge our current understanding. The next generation is the life-blood of INSAR and of the autism research field. We want to do everything we can to support the careers of the next generation so that INSAR is still doing pioneering science in the centuries to come. As we know, science is a long-term endeavor, and the more we discover, the more new questions are opened up. The next generation of autism scientists will carry the torch forward, competing for medical research budgets to be spent on autism, so that knowledge deepens and we learn how best we can help.
5 - Building Identity:Promote INSAR as the premier society for autism researchers.
INSAR is not a Society that simply wants to feather its own nest for the sake of self-promotion of a club of scientists. Rather, INSAR aims to occupy a space on the world stage that is essential. Other major autism charities might focus only on service provision or policy, which are also vital, but we mustn’t lose sight of the fact that services and policy need to be evidence-based, through research. Research can ultimately reveal the mechanistic causes of autism and which treatments are safe, effective and for whom, so that autistic people can fulfill their potential. No other body is both promoting autism research and has members conducting it, on such a large international scale.
6 - Research to Practice:Disseminate scientific knowledge to inform research priorities, policy, practice, and public understanding.
This overlaps with initiative #2 (translation), but emphasizes the role we have as researchers to also be communicating our science to diverse audiences, including policy-makers and practitioners. The INSAR Policy Briefs are one example of this, the first of which will appear later in 2018. And finally:
7 - Partnerships:Foster communication between autism researchers and people affected by autism.
This is also key, and has not always been as full as it could be. Charities like Autistica in the UK are leading the way in consulting with the autistic community about their research priorities, so that autism research avoids the danger of becoming increasingly irrelevant; and are consulting with the autism community about how to conduct research, so that it is both autism-friendly and respectful. Gone are the days (thankfully) when scientists assumed they knew what research was best and how to do it. We are now in a new era of dialogue, where autistic people can advise scientists on the design and implementation of experiments and treatment trials. Dialogue ensures they have a voice in setting the research agenda, ensuring topics like autistic vulnerability, mental health and employment are just as central a focus as topics like the genetics of autism. And increasingly, autism scientists may themselves have autism, ensuring the autistic perspective and voice is part of the scientific
So what is INSAR missing? Are there Strategic Initiatives that you think we should be introducing, and that have been overlooked? INSAR is ultimately a society that represents its members. So please email me via email@example.com and at our next Strategic Meeting in November 2018 we can examine if some of these initiatives should be retired, reworded, or replaced, or if others should be added.
INSAR President 2017-2019
Cambridge University, UK
Published online in Wiley Online Library (wileyonlinelibrary.com).
2017 International Society for Autism Research, Wiley Periodicals, Inc.
INSAR President’s Message – December 2017
Autism Research, 10: 2058–2059. DOI:10.1002/aur.1890
International Society for Autism Research (INSAR)
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