Conducted by Nicole Pearson, PsyD, BCBA-D
The need to educate parents, professionals and communities as a whole about the importance of evidence-based treatment in autism is great, and perhaps even greater in countries outside of the United States. The Global Autism Project is one organization committed to doing exactly that by partnering with local treatment and education centers in countries around the world including Peru, India, Kenya, Indonesia and the Dominican Republic. I had the privilege of traveling with this organization to Kenya in 2013 and seeing their great work – including their efforts to promote science in autism treatment- first hand. Recently, I had the opportunity to interview Global Autism Project’s founder and CEO, Molly Ola Pinney, so that she can share with our readers more about how her organization is promoting this important mission.
Q: Molly, having had the privilege of working and traveling with the Global Autism Project, I know you celebrated a big milestone in 2013 – 10 years since its founding! Can you share with our readers what led you to found the Global Autism Project?
A: As is the case for many of us in this field, I began my work as an ABA therapist in Seattle for one 6 year-old boy with autism. His family asked me to work with him and part of the reason that I accepted the position, even though it was not at all in line with my plans at the time to become a Developmental Pediatrician, was because the job would end in nine months as the family was moving to Ghana in West Africa.
If there was anything I knew at the time, it was that I was most certainly NOT going to be moving to West Africa. Less than a year later, that’s exactly what I did – I moved to Ghana to continue providing services for their son. Shortly thereafter, people began showing up at my house asking for the lady who knew about autism.
As I began having conversations with families of children with autism, I would hear time and again the same story of fear and misunderstanding about what autism was and about the locally accepted belief that these children were possessed or taken by ‘bad spirits.’ Shortly thereafter I met “Auntie Serwah”– a parent of a child with autism who had started the Autism Awareness Care & Training center in Ghana. The Autism Awareness Care & Training center was a beacon of hope for families, a safe space management.
This model fosters the dynamic of sustainable development, ensuring that our partner sites receive training that will persist in our absence. It is imperative that our work be carried out in this manner, as it is neither culturally appropriate nor practical for the Global Autism Project to be ever-present at our partner sites. Our partnerships are intended to last for five to seven years in order for the centers to stand on their own and further disseminate science in autism treatment in their communities.
We currently have partnerships with centers in Peru, India, Indonesia, Kenya, and the Dominican Republic. We are thrilled to work with individuals who can align their passion for helping children with autism with the need for science in treatment.
Q: Having travelled with your organization as a former SkillCorps team member, I can attest to the unique experience the Global Autism Project offers to practitioners to see autism treatment in another country. Can you tell our readers more about this program and why you created it?
A: SkillCorps is our travel abroad program in which teams of four to si skilled professionals have the opportunity to travel to one of our partner sites. During these two-week trips, teams provide hands-on, in vivo training to staff working with children with autism. That training can encompass programming, behavior management and how to teach utilizing the principles of ABA. Teams may also provide support to parents and caregivers and hold awareness events in the community. Our trips ensure that partner sites are receiving training from diverse sources in order to round out clinical skills. Volunteers are selected from a competitive pool of applicants, who are required to submit applications and interview for the trip of a lifetime.
SkillCorps was founded for multiple reasons. Primarily, we recognized the unique and meaningful experience our work abroad provides for both our partners and ourselves. We wanted to share that experience with other skilled clinicians who could not only have the transformative experience our work entails, but offer their skills in a meaningful and enduring way. By creating SkillCorps, we have opened the door for cultural empathy and increased understanding of both the plights and strengths of people working in autism treatment and education in under-resourced areas.
In subscribing to a model of sustainable development, we also recognized that our own work was not sustainable if we tried to do it alone. With a relatively small staff, we could not realistically provide all of the in-person training needed as well as the distance supervision and support. SkillCorps allows the privilege of providing training and support to be shared amongst many skilled professionals.
The final reason for the inception of Skill- Corps is the unique training opportunity that is created when individuals from diverse backgrounds and skill sets come together as a unified team. The contributions of our team members are shaped by that diversity and enrich our trainings and our work.
Q: What do you find to be the most challenging aspect of your work?
A: The most challenging aspect of our work requires cultural empathy and purposeful optimism. We meet parents, caregivers, and staff around the world who are relying on instinct in the absence of scientifically supported interventions and finding that they come up short. Without the training required to provide evidence-based interventions, those providing services to children with autism are becoming disheartened and the children themselves are ostracized from communities who lack knowledge or understanding. At times we feel our impact is too small and we may become discouraged by slow progress. This, of course, is thwarted by the successes (however small) of our partner sites and the empowerment they receive through training. We find that we must not only remain diligent in our mission, but also remain open to feeling and experiencing what those working in the autism field abroad are feeling and experiencing. It is only through cultural humility and empathy that we can meet people where they are at to provide meaningful support.
Q: I know an important part of your work is to build sustainability and capacity at partner sites. How do you do that and ensure evidence-based practice is a part of that?
A: We require a few things from our partner sites: Commitment to sustainable change, commitment to evidence-based practice, and openness to the changes required in programming to foster evidence-based practice. Our partners desire the same things we do: to engage with interventions that are proven effective and professionals who can foster the development of these interventions.
Q: What role does the Global Autism Project play in terms of advocacy and working with parents?
A: The Global Autism Project is fortunate to work with partners who support parents and caregivers in a variety of ways. One-on-one meetings, home visits, and support groups often play an important role in the child’s learning. The Global Autism Project supports our partners’ efforts by hosting some of these support groups and accompanying them on home visits during our SkillCorps trips. We also help to host advocacy events, provide networking opportunities and foster connections to make efforts more effective. Each year on Autism Awareness Day, we find our partners’ taking meaningful action by lobbying their government and engaging their communities to cultivate acceptance and understanding on both a local and international level.
Q: What treatments have you found to be most popular in other countries? Are there any that you see more commonly across countries or does it vary greatly?
A: We find that in the absence of training and resources to nurture evidence-based practice, those working in autism treatment rely on instinct. Specific treatments are not engaged in many of the communities we work with – instead we find students and teachers frustrated by academic demands and behavioral requirements of “typical” classrooms. We have, over time, found the awareness of applied behavior analysis to be growing with more sites and more countries reaching out for training and support daily. This is largely due to the efforts of those in the ABA community working to disseminate scientific practices.
Q: What are your future goals for Global Autism Project?
A: When the Global Autism Project began in 2001, it was with the intention of “changing the world for people with autism.” Thirteen years later, this remains our long-term goal. In order to change the world, we must mobilize those with expertise in scientifically sound interventions to come together as a conduit for change. Short-term this will entail recruiting a greater network of volunteers for our SkillCorps programs, increasing the number of people reached through our training by fostering additional partnerships. We also hope to provide more training according to the prerequisites for board certification in behavior analysis in order to train professionals in under-resourced areas to the gold-standard of evidence-based practice through courses and supervision.
Q: What do you see as the greatest needs for promoting science in autism treatment internationally?
A: Increasing access to training whether through university partnerships, access to materials in multiple languages, or greater dissemination of evidence of applied behavior analysis. We additionally see the need to recognize behavior as communication, as supported through scientific evidence, in order to reach a point where practitioners believe in the potential for change in their communities.
Q: What can we as practitioners here do to support your work and organization as well as the work of promoting evidence-based treatment abroad?
A: We would love to have more professionals share their expertise in the international community through ethical and sustainable means. One way of doing this is to travel with us, but we also have opportunities to volunteer through
distance clinical supervision and support. If you’re interested in traveling with SkillCorps, you can apply on our website (http://www.globalautismproject.org). There you’ll also find information about our other volunteer opportunities and how to get involved. We also ask that, to start, professionals in the scientific field would be aware of the boundaries to dissemination born of language barriers and lack of access to effective training. In order to mobilize our community, we must first be aware. During our orientation process with SkillCorps team members, that’s always where we start and then we can build and educate more effectively from there. There are 70 million people in the world with autism. 85% of them live in developing countries. We have a ways to go!
Citation for this article:
Pearson, N. (2014). An interview with Molly Ola Pinney, founder and CEO of the Global Autism Project. Science in Autism Treatment, 11(4), 8-12.