An Interview with Dr. Purnima Hernandez, DDS, MA, BCBA,
Medical Provider, Advocate, and Mother
David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
David: Thank you kindly for taking time from your busy schedule for this interview. When we met at NYSABA this past Fall, I was very intrigued by your credentials; more specifically, that you were dually trained and board certified in pediatric dentistry and behavior analysis. Can you kindly tell our readers a little bit about your professional background?
Purnima: Thank you for this opportunity to share my personal journey as the parent of a child with autism and how this has influenced my professional and clinical path. I began my dental education in Mumbai, India and moved to New York to attend graduate school. At Columbia University College of Dental Medicine, I obtained my DDS, Certification in Pediatric Dentistry, and a Master of Arts in Dental Sciences. After completing my program, I chose a career in academia and continued to teach at Columbia University for several years. Concurrently, I maintained a clinical practice treating children, including those with special needs. In 1995, I made a decision to consider a full-time position and partnership in clinical practice and moved to New Jersey.
Our son (first of my two children) was born extremely premature and that was the start of my “board certification” as a parent of an individual with special needs. I made yet an-other career change shortly after his birth and I decided to stay home and become his full-time caregiver. My son had many needs, so I educated myself through courses, trainings, and extensive self-learning. This is when I was introduced to applied behavior analysis (ABA).
I returned to clinical practice after a 5-year hiatus. It became apparent that the education and practical training that I had gained while being a full-time caregiver was extremely beneficial in my clinical practice when working with children, especially those with behavioral disorders. While I was introduced to multi-disciplines, I was most intrigued by the behavioral sciences. This is when I made a decision to pursue a Masters in Applied Behavior Analysis and ultimately, board certification. I received my BCBA in 2013. The letters that follow my name, mark my personal journey. I suspect it will continue to grow as I am committed to lifelong learning.
David: Such an incredible journey indeed. Can you also share with our readers a little bit more about your son? When was he diagnosed?
Purnima: My son was born prematurely at 25 weeks, weighing 1 lb and 4 oz. He was a micro-preemie. He remained in the Neonatal Intensive Care Unit (NICU) for 6 months battling infections and major system involvement. Based on his diagnoses and extensive interventions it became clear very early on that he would need specialized care throughout his lifespan for residual medical issues. By age three, he was demonstrating behavioral characteristics consistent with autism and he received a diagnosis of Pervasive Developmental Disorder, which is now termed Autism Spectrum Disorder.
As we speak today it is hard to believe that my son is now 21 years old. I find his learning history to be remarkable because his medical issues were so severe that he was not expected to live let alone learn. Through a well-planned program (ABA, speech, occupational and vision therapies) suited to meet his medical and behavioral needs, he has made tremendous gains. He spent part of his day at a program during which he received instruction in ABA. This is where we both learnt well. He learnt to sit, feed himself, and by the end of his time there he was able to follow an independent activity schedule. Today, he is able to communicate his basic needs and learning daily living skills such as shaving, brushing, preparing his meals, etc. His favorite activities are his voice lessons, listening to music, and playing on his device. With help from his teachers, he grows organic vegetables in the summer to support the “backyard-to-table” concept in the neighborhood. Thanks to his extended team, he is almost independent in starting a small neighborhood sprouted bean business. I credit these changes to the hard work and planning on the part of his educational and medical team through the years. It is important to add that our entire family (myself, father, sister and grandmas) is dedicated to his care and are key members of the extended team. It is unfortunate but he continues to experience medical difficulties severe enough that require multiple admissions to hospitals every year. During these events, I am amazed at his ability to endure medical procedures that are often difficult for neuro-typical adults of his age. What I find the most remarkable and inspiring about my son is that he is happy all the time.
David: You have so much for which to be proud given his very tenuous entry into the world. I want to shift gears for a moment. To what extent did dental school prepare you for working with dental patients with special needs? Did you learn strategies or management practices to promote tolerance and cooperation and enhance preparation?
Purnima: Most educational and training programs aren’t specifically focused on teaching advanced management strategies to promote tolerance, cooperation or enhance preparation specific to children with ASD. The dental and medical school curricula cover extensive information about their sciences but they may not include in-depth training in behavior management due to time constraints. I must clarify that even with my advanced education in behavior, complex dental issues (extensive cavities) may require advanced measures such as hospital dentistry or sedation for effective treatment. Fortunately, pediatric dentists receive basic behavioral education and understanding of behavioral procedures. But children with ASD often engage in severe problem behavior which may require advanced behavioral knowledge to successfully intervene. Knowledge alone is not adequate to manage such severe problem, meaning the provider would need extensive training in the practical application of behavior analytic principles. This is where my personal experience and intimate involvement in my son’s educational program has filled the gaps in my education when working with children with special needs.
Since 2006 I have been lecturing and authoring articles on working with children with autism in dental settings. I get invited to conferences across the nation and the subject of my conversations are management strategies, how to promote tolerance, and how to enhance preparation in a child with ASD. Over the years, I have found that with increased awareness and rise in the numbers of individuals with ASD, dental providers are eager and willing to learn.
David: I can appreciate that the time constraints inherent in many training programs may not adequately prepare providers to work with patients with conditions such as ASD. As you mentioned earlier, your personal experiences have filled some gaps for you. How have your personal experiences raising a child with ASD influenced your practice?
Purnima: My personal experience as a parent of a child with ASD has been pivotal in shaping my career path and in how I practice and personalize plans for my patients. My son’s experiences have enabled me to become a compassionate provider and informed in topics that typically a healthcare provider would not access. For example, my son has been under anesthesia for many surgical procedures and I remember sitting in the waiting area and feeling anxious. Today when I perform surgical and oral rehabilitation procedures with children under anesthesia, I prepare the families for this experience by arranging a pre-surgical phone consult. The purpose of this consult is to prepare the families and children for the procedure by providing details on the process, how they can prepare for it, and to answer any questions they may have. During the surgery, I call the families several times to let them know that their child is okay. Many parents find these phone calls before and during the surgeries very comforting. With preparation, they are able to navigate these tough moments with less anxiety. I cannot tell you how many times parents have thanked me for this simple courtesy extended to them.
As a parent, I always want to be in the driver’s seat, meaning have an in-depth under-standing of the issues at hand and be included as member of his extended team (health and educational). My husband and I are the constants throughout our son’s life and empowering ourselves with the proper tools was essential. I bring this experience, understanding, and exemplar to the parents. Therefore, parents in my practice are indeed part of the team and we share common goals and objectives for the child. To stay in my practice, parent-child dyads are asked to practice simulation of a dental exam and basic skills before their dental visits. For example, in a preappointment caregiver phone interview I briefly review the medical history, assess their child’s behavioral needs, identify potential reinforcers, and suggest strategies on how the parents can help their child prepare for the upcoming visit. This interview also helps me develop a provisional customized plan for the child. We have uploaded personalized video models on several steps of a basic dental cleaning and social stories for each provider. The parents are asked to have the child view video models specific to the child’s needs. Then the parent can simulate a dental exam by having the child sit in a slightly reclined position while counting their teeth with a mirror for brief exposures. This allows the child to learn the routine at their pace. It provides visual, auditory and tactile exposure but done by virtually in an environment that is conducive to learning and taught by people who are familiar to the child using procedures that are effective. In my opinion, parental involvement truly influences the child’s outcome.
Also due to my son’s extensive medical and surgical experiences, I have become more comfortable accepting and managing complex medical care and services for children. As a result, I feel better equipped to consult and coordinate care with other providers.
David: I really appreciate you sharing how your practice has evolved based upon your personal experiences. This discussion is very interesting and ties in with one of our January 2019 articles related to compassion. I believe our important work within the autism community is only enhanced by explicit conversation about the role of compassion. What led up to your decision to pursue graduate work in applied behavior analysis? What additional perspectives did you garner from that graduate work?
Purnima: After five years of being actively involved in providing therapies and coordination of services for my son, I returned to pediatric dentistry. My work with patients had transformed, and I was having greater success in managing problem behavior. After some self-reflection, I attributed a large part of this success to my behavioral knowledge and practical training gained during the one-on-one training with my son. While I sought education in many areas of his needs, it was the behavioral knowledge that seemed most important to pursue to help a larger group of individuals. Prior to his home-based ABA program, my son received training at a leading autism clinic and was exposed to excellent ABA intervention. I was a full-time caregiver for my son then and took advantage of this opportunity to become trained. This inspired me to seek further education in the behavioral sciences/ABA. I decided to attend a local university program to work toward my Masters and a board certification in applied behavior analysis.
For about 6 years I attended classes at night, practiced in the day, and attended to my own family’s needs. It wasn’t easy and probably one of the most challenging times of my life. The rigor of the program and desire for personal excellence left me with little time. I am very grateful for my family’s support through these years. (What I am most proud of is that I graduated with a 4.0 average and an excellent education.)
This experience has empowered me to not shy away from learning. Any discipline can be learnt regardless of age, and only oneself is a barrier. It wasn’t switching discipline rather adding to current knowledge. This is powerful for me and fuel for my journey.
David: Learning a new discipline is challenging enough but to pursue that with all of your competing responsibilities and demands is nothing short of inspiring! What advice would you give in general to a parent of a newly diagnosed child with autism with respect to participating in health care delivery and pursuing healthier lifestyles?
Purnima: I advise parents to become partners in their children’s educational and health teams. To inform and educate themselves in their child’s needs as it will help them advocate for their child effectively. I encourage parents to get training on how to work with their child. This will have a direct impact on the outcome and promote generalization of the child’s skills within the natural environment. ASD is a behavioral disorder and understanding of basic behavioral foundations is a necessity for all parents to manage behavior in any environment. It will shape the skills that a parent may need throughout the lifespan of the individual. What empowered me the most were the outcomes of my daily involvement in his rehabilitation process. I also gained deep respect for his providers who work so hard daily.
Health is primary. As a healthcare provider and a parent of a child with ASD, I strongly advise the parents to care for their own health and learn active ways to manage their personal stresses. The caregivers need to be healthy first to provide for their child. This is reminiscent of the airplane safety announcements, which encourage adults to put oxygen masks on first before putting one on the child. This will require proactive measures and effort.
Parents and professionals can feel overwhelmed since there may be so many skills to teach and behaviors to manage that skills such as “tolerating healthcare” can easily be overlooked. But visiting a dentist or a physician and its recurrence throughout the lifespan of the individual is the one event that is guaranteed. Hence working on these skills is a necessity in my opinion. The American Academy of Pediatric Dentistry (AAPD) recommends that the child visit the dentist at one year of age or six months after the eruption of the first tooth. Many parents of children with ASD report difficulty in their children’s tolerance of simple procedures during these visits. Families often avoid dentist visits, as the children are unable to tolerate even simple exams without strong resistance. Most typically developing children will resist initially but soon become accustomed to the procedures with exposure. Children with ASD may lack generalized compliance, joint attention, and imitation skills and continue to experience difficulty. Some may exhibit phobia-like responses. When the child is physically smaller, a healthcare provider with a parent may be able to deliver treatment successfully with a limited restraint. As the child grows the physical restraints may become ineffective to hold the child safely to deliver treatment. This may mean a life time dependency on more invasive techniques such as sedations for routine procedures. It does not have to be this way.
It is important to know that basic routine procedures such as a dental exam, cleaning, and x-rays may not be painful and the child may learn to tolerate them with proper intervention and effort. I cannot emphasize enough the importance of these skills and the long-term value they have on the quality of life of individuals with ASD.
David: What advice would you give to a health care professional who would like to enhance his or her practice serving patients with autism?
Purnima: For professionals also informing themselves of current understanding surrounding the diagnosis and established effective interventions is key. Although familiarizing oneself with the DSM criteria and assessment methods is important for diagnosis, providers may consider additional training on how to manage child behavior by understanding of basic foundations of behavior and use of procedures such as reinforcement, shaping, and the use of prompts and prompt fading. Although reinforcement procedures are widely used, for it to be effective one requires in-depth knowledge. Provider training is needed to promote generalization of skills the child has learnt from home to office setting. During the generalization process one might see an increase in non-compliance. This is where the cross-disciplinary approach, that is seeking help from the child’s behavior analyst becomes valuable to manage severe problem behavior.
Patient preparation is vital. By this I mean teaching appropriate skills needed during office visits. However, healthcare professionals may not necessarily have to teach these skills themselves. This could be accomplished by teaming with parents and behavior analysts. For example, teaching materials such as video models and social stories of routine procedures could easily be uploaded to the providers’ website. The behavior specialists and parents can have access to these during the teaching sessions. Once the child has learned the steps in a procedure, the parents and dentist can arrange for an appointment at a time when the practice isn’t as busy. Initially the optimal environment for teaching and learning is important. This will allow the dentist and parent (or behavior analyst) to work together to help generalize; that is transfer the skills to the office.
In summary, both the provider and the patient may need to learn new skills and understand that it will require resources and some effort (response effort) upfront. The outcome of this has possibilities that are life changing for an individual and family. This service that is improving “quality of life” currently remains without a code.
David: I have just a few more questions. What are some of the most important lessons you learned over the last several years that have enhanced your practice? Your view of healthcare service delivery? Directions for future consideration and action?
Purnima: First, working with ASD often requires a greater response effort for child, parent and provider but my focus is on the end point and reliance on the fact that many individuals with ASD can learn. Information, actively seeking education and practical training, and using it with the individual is key for the parent and professional.
Second, as a parent, knowing that we are the constant in the child’s life and for the long-term, informing self and getting trained on how to work with the child is absolutely critical.
Third, preparing the child for challenging experiences is important. This is often overlooked by parents or perhaps not considered due to lack of time. But it is THE necessary step for progress and learning. We cannot expect a learner to engage in a skill they do not have. Also, remember that these skills will have to be generalized and maintained. Just because it is rehearsed does not mean the child with execute the same way in a novel environment like the office. That transfer of skills will also take some effort. These new skills will need to be rehearsed even in the absence of need so that the child can recall and execute in time of need (maintenance).
Fourth, maintaining health of self and child is key. Anyone with a poor diet, nutritional deficiencies, poor sleep patterns, inactivity, or severe anxieties will have difficulties in learning. These issues are common among individuals with ASD. Bringing active attention to these along with appropriate behavioral programs may give the individual the best chance to learn. The constant use of edibles during programs has dental consequences and also possibilities of chronic health issues in the long run. These must be used with caution and every effort should be made to transition to the use of tangibles as reinforcers during programming.
Fifth, learning healthcare routines are essential for every child because they will need those skills throughout their lifespan. Teaching / learning these earlier is far easier than when the individual is physically bigger. they are left with more restrictive options such as physical restraints or sedation for simple routine issues. Many children in my office are learning to sit in my chair before they can even communicate.
The design of the current delivery system may pose problems when trying to meet the need of the individual with ASD. For instance, the lengths of appointments are not conducive to teaching and practicing skills with the learner. The reimbursements are poor, if any, for the length of the visits and the provider’s effort. I am hopeful that as we publish more research in this area, we may be able to influence policies that will drive healthcare change to address these needs.
David: Thank you so much for sharing your incredible story with our readers and being so generous with your time, experience and expertise. I look forward to staying in touch.
Citation for this article:
Celiberti, D. (2019). An interview with Dr. Purnima Hernandez, DDS, MA, BCBA, medical provider, advocate, and mother. Science in Autism Treatment, 16(2).