Sharon Smile is a Developmental Paediatrician at Holland Bloorview Kids Rehabilitation Hospital in Toronto and an Assistant Professor in the Department of Paediatrics at the University of Toronto.
A widely held belief, popularized in the book Outliers by Malcolm Gladwell, is that 10,000 hours of practice helps to create an expert or master performer in a given field. I think that’s a myth. It has been 6 months of COVID-19 quarantine and a lifetime of practice, but having difficult conversations and disclosure of a diagnosis of autism spectrum disorder (ASD) to clients and their families has become increasingly challenging.
Due to COVID-19, physicians have pivoted from in-person diagnostic assessments to telemedicine diagnostic assessments. We’ve had the privilege of being invited into a family’s home to participate in virtual play dates with an aim to better understand the child or youth developmental profile. I use this platform to disclose a diagnosis of ASD to clients and their family. Some parents and clients welcome this new knowledge and understanding, and use this information as a stepping-stone towards acceptance and advocacy. However, the opposite is also true. Some families are terrified, frozen, silenced, helpless, crying and gutted during the disclosure and I feel inadequate in physically and emotionally supporting these families. I have sometimes left the Zoom meeting by clicking the “End Meeting for All” button with a persistent draining feeling of inadequacy. I felt I needed to do more to support our clients.
I reviewed the practice guidelines for telepsychiatry with children and adolescents, and immersed myself in Principle 11, “The physical setting should be arranged, and the virtual relationship should be established to produce an optimal encounter”. I was deliberate, animated and I thought I had established a good virtual relationship and my videoconferencing etiquette met our Hospital Standards, but something was missing.
I scoured the literature and reviewed the SPIKES method for delivering bad news: set the stage, perception, invitation, knowledge, empathy/emotions, and summary/strategy. Again, something was missing. I applied the ABCDE method for delivering bad news: advance preparation, build a relationship, clear communication, assess patient reactions, encourage and validate emotions. Although more practical, there was overlap with strategies used in the SPIKES method, thus my new efforts did not deviate too far from my usual approach to disclosure. One last attempt…I applied the BREAKS protocol: background, rapport, explore, announce, kindling and summarise. This too was not vastly different from, nor augmented, my current approach. Then, something happened. I had a revelation and, mixed in with tears and exhaustion, I understood the reason for the feeling of inadequacy.
The gap was not in the information disclosed or my method of disclosure. The gap was related to two particular things. First, I was making a mistake in framing disclosure of an ASD diagnosis using frameworks grounded in a “delivery of bad news” construct rather than framing it as a constructive strength-based discussion paired with timely supports and continuity of care. Framing ASD as an asset-based disorder with specific areas of developmental domains needing supports is simply a better descriptor. Second, I was struggling to make a “human connection” in the new virtual normal. As we pivot to telemedicine as our new norm, let us not forget that it is human to connect and to display compassion in our encounters and understand that, as clinicians, we are also experiencing sensorineural responses in the disclosure dyad or triad, which is being human not inadequate.
I have learned a few strategies, which I have found helpful in disclosing a diagnosis of ASD in the era of telemedicine. They may be helpful to others
- Be human. It is okay to feel the myriad of emotions experienced by parents, ranging from despair, discomfort, relief and joy during disclosure.
- Recognize that cultural factors may impact a parent/caregiver response to disclosure and as such, clinicians should be respectful and refrain from applying stereotypes/biases to the encounter.
- Ensure that you provide families with a written/electronic list of recommendations. Be clear which actionable items are the parents’ or clinician’s responsibility.
- Offer and/or provide a follow-up phone call within 2 weeks of the disclosure to clarify or answer any questions parents and/or clients may have.
- Facilitate timely contact with a social worker to support the family with reviewing recommendations, connecting to ASD community resources and funding opportunities.
- Facilitate connection to culturally sensitive parent–parent ASD resource programs within the community.
As a physician, one encounter is just that: one encounter. We must be open to learning new techniques and strategies to support the clients that we serve. The concept of 10,000 hours is not applicable to disclosure, where circumstances are different each time. Instead, an openness to learn, to care and to be human is the key to becoming an expert. I am proud to be human.