Conducted by Nicole Pearson, PsyD., BCBA-D
The advent of advocacy organizations like ASAT, Autism Speaks, Autism Science Foundation and the Organization for Autism Research have played a significant role in bringing autism awareness and treatment into the mainstream here in the United States. While there is still much work to be done here, in much of the international community, the understanding and treatment of autism is still in its infancy. In April of this year, I traveled to Kenya with the Global Autism Project where we worked at Kaizora Consultants, an educational program founded by Pooja Panesar that provides ABA-based services to children with autism and other developmental disabilities. Recently, I had the chance to speak further with Pooja about her organization and training experiences as well as the current state of autism awareness and services in Kenya.
Q: Let’s start from the beginning, can you tell us about what led to your decision to pursue a career in autism treatment?
A: I actually never made a conscious decision to pursue a career in autism treatment. When I moved back to Kenya in December 2006, I started applying for jobs as a teacher or counselor at various schools and a parent of a child with autism saw my resume and asked if I would work with her 7-year-old son at home. Up to that point, she had been unable to find a provider with any autism-related experience. I started his home-based program in 2007 and he gained many skills in such areas as communication, attending to others and using the toilet independently. As word of my work spread, I started working with several more children in their homes and by 2009, I could no longer sustain the traveling from home to home and decided to create a center-based program which led to the founding of Kaizora Consultants.
Q: That is such a common experience among service providers in underserved areas both here in the US, and abroad. Where did you receive your training?
A: I completed my undergraduate studies in Canada at McMaster University with Honors in Psychology, Neuroscience and Behavior (major) and Biochemistry (minor) in 2006, before moving back to Kenya where I was born and raised. After doing the home programming work with children here, I began looking for a program to further my education and training. Despite impressing professors with my programs and data collection, there was no financial support at the time. Finally in 2011, I received a scholarship from the University of Massachusetts, Boston, to pursue my certificate in Applied Behavior Analysis (ABA) which I completed in 2012. I then enrolled in a Masters program in Education in which I completed in August with distinction. Next, I plan to sit for the BCBA exam in 2014. In terms of my work experience, I first learned about ABA during my undergraduate studies when I worked with the Behaviour Institute, running home-based programs for individuals with autism. I worked there until I graduated, after which I obtained a job with a rehabilitation centre where I worked with individuals with brain damage, and helped them re-integrate into society. I did this until I moved back to Kenya.
Q: You have the first behaviorally-based center in East Africa that provides services the children with autism. Can you share with our readers more about what autism treatment is like in Kenya?
A: Unfortunately, autism treatment first requires high levels of awareness and, currently, many Kenyans are still unaware of the disorder or the needs of those who are affected by it. There is a growing number of organizations focused on creating this awareness so hopefully that will change. In terms of treatment, there are just a few professionals in the field at the moment, and their availability is limited. Therefore, treatment access and resources are sparse and limited.
Q: For those who are pursuing treatment in Kenya, which treatments are most popular?
A: Currently, many families who find out they have a child with autism pursue the gluten free/casein free (GFCF) diet intervention, as it is the most popular. Some recognize the need for speech and language therapy, but few have access to such services due to the limited number of professionals and the financial constraints associated with paying for services.What resources do parents turn to, in order to learn about autism treatment? Do these resources recognize best practices based on scientific evidence?
For many, this depends on the financial resources of the family. For those who have Internet access, they rely on it as a primary source of information. In some instances this can be difficult, as they aren’t necessarily able to distinguish fad treatment options from evidence-based ones. For those without Internet access, they rely on whatever they hear from the doctors who made the diagnosis or on word of mouth. There are a few societies that have been established to promote autism awareness, but not all appreciate the importance of evidence-based interventions.
Q: Have the professionals in Kenya organized to advocate for evidence-based autism treatment? What about the parents? Are they organized, or is everyone fighting on their own?
A: The professionals in the field of autism in Kenya are few, and not all of them advocate for evidence-based treatments, though some do, myself included. While the professionals in Nairobi try to communicate with one another, they often end up working independently due to time and resource constraints. Moreover, most have differing training and tend to follow what they’ve learned. Currently, there is no other professional in Kenya, besides me, who is certified in ABA. On the parent side, it can be very challenging for them, because as you can imagine, they are willing to try anything out of desperation to help their child and as I’ve already mentioned, most have limited access to information.
Q: As you know, there are several thousand BCBAs here in the United States. Are there any BCBAs in Kenya?
A: We’re still waiting for the first one, and I’m hoping to contribute to filling this gap very soon!!
Q: We look forward to that! In terms of special education, the students who attend Kaizora receive ABA-based individualized instruction. What is special education like for children with autism who attend public schools?
A: Due to the financial constraints of families and limited treatment resources in Kenya, few children receive any type of early intervention or other services prior to entering school. Some public schools have sectors or units that are dedicated to working with children with special needs. Others include the children with mild disorders in the classroom; however, the benefit in this is limited due to the high teacher-student ratios. There is a limited number of special education teachers and the training many receive is not always sufficient to handle the specific needs of these children. Often, children who are more severely affected, and whom the teachers find too difficult to handle are simply sent back home.Most parents do try to put them in some educational placement, but unfortunately, it doesn’t always meet their child’s needs.
Q: From your standpoint, what help/information is most needed in Kenya?
A: In my opinion, the greatest needs are in promoting evidence-based practices and in helping parents get access to this information. In addition, many families are in desperate need of financial support, as they cannot afford to pay for behaviorally-based services, and the government does not provide any funding. As a result, they are at a loss about how to help their children, which results in a loss of precious intervention time. If some of these factors can be fixed, there will be an increase in effective early intervention efforts which, ultimately, would give many more children with autism a better long-term outcome.
Q: Is there anything that we, in the international community of parents and professionals who engage in science-based treatment, can do to help in your goals?
A: There is plenty to be done. First and foremost is helping create greater awareness and disseminate best practices in autism treatment. Then, support services both in terms of financial resources, as well in training service providers and parents to work with and advocate for their children. For example, we have a team from the Global Autism Project that comes twice a year to facilitate trainings with Kaizora staff and help with other outreach activities. Consistency and sustainability are vital when it comes to help from the international community, to ensure that the assistance provided is meaningful and long-lasting.
Pooja, thank you so much for sharing your perspective and insight about the state of autism treatment in Kenya with our readers. From your work in establishing one of the first ABA-based autism treatment centers in Kenya to pursuing your board certification in behavior analysis, you’re certainly making great strides in bringing greater awareness to the importance of evidence-based treatment to families and practitioners in Kenya.
We wish you the best and hope that practitioners and clinicians in our field will continue to support your very worthwhile efforts.
Citation for this article:
Pearson, N. (2013). International interview: Pooja Panesar. Science in Autism Treatment, 10(4), 22-24.