Ep 13. Autism: Beyond the Diagnosis

Introduction

Recently, my classmate Eric Busto coordinated a talk on providing safe care to patients with Autism. There were tons of great tips provided. With Eric’s help, I reached out to an expert in autism care for more information. Stephanie Jull is the Director of Programming at the Canucks Autism Network (CAN), has a PhD in Special Education and is a Board Certified Behaviour Analyst.  At CAN, Stephanie oversees program development, program partnerships, and training initiatives to build capacity.
Eric Busto is a candidate for Class of 2019, has been a long time volunteer at CAN and was instrumental in formulating the interview questions, conducting the background research and writing the summary below.

Background Information

  • About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.
  • autism affects 4–5 times more males than females (Lombardo & Baron-Cohen 2014)
  • More than 70% of individuals with autism have concurrent medical, developmental, or psychiatric conditions (Lombardo & Baron-Cohen 2014)
  • Sensory abnormalities are prevalent in ASD, with 94.4 percent of the ASD sample reporting extreme levels of sensory processing on at least one sensory quadrant of the AASP (Crane and Pring, 2009)
  • On average primary care physicians care for 10 patients with autism (Golnik et al., 2009)
    • Primary care physicians report a lack of self-perceived competency, a desire for education, and a need for improvement in primary care for children with autism
    • Children with autism visit their physicians more frequently and have increased rates of comorbid medical conditions, mental health problems, behavioral concerns, and developmental delays
    • Consistent with the parents of children with autism who expressed low confidence and dissatisfaction with their children’s physician

Resources

  1. Canucks Autism Network website http://www.canucksautism.ca/
  2. Autism Community Training http://www.actcommunity.ca/

Summary (written by Eric)

In medical school, we covered autism to the extent that we are aware that it is spectrum of developmental abnormalities and we covered some of the ‘red flags’ that may prompt us to consider a diagnosis of autism. Beyond that, our understanding of working with patients with autism is severely limited. Indeed, studies have shown that primary care doctors feel unprepared to manage patients with autism, highlighting the importance for further education of medical professionals. The current prevalence of autism is 1 in 68 children, and so everyone will encounter patients with autism at some point in their career, if not regularly. In this podcast, Stephanie Jull, PhD, director of programming at the Canucks Autism Network, gives some great advice on working with patients with autism in a health care setting.

A central theme is that parents can be our most valuable resource. If you’ve met a child with autism, you have met only ONE child with autism. Each patient will have unique interests, strengths and challenges. In consulting with parents, we may be able to learn important strategies for communication, signs of distress, and methods of calming each child. Also, just like everyone else, patients with autism like to know what is going to happen next, and this can help to reduce anxiety during an office visit. Try to use a strategy that Stephanie Jull calls “preloading” to ease transition between one aspect of an office visit to the next. This could take the form of writing out what you will be doing during the visit, letting the child know approximately how long things will take, showing what you are going to do before performing anything on the child themselves, and many other strategies.

Autism is a diverse condition, and no parent will expect you to be an expert. Approach each encounter with an open mind, and be willing to learn more about each child and try new things. Parents will be thrilled if we simply make an honest effort.

References

Lai, M., Lombardo, M. V., & Baron-Cohen, S. (2014). Autism. The Lancet,383(9920), 896-910. doi:10.1016/s0140-6736(13)61539-1

Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical Homes for Children With Autism: A Physician Survey. Pediatrics,123(3), 966-971. doi:10.1542/peds.2008-1321

Crane, L., Goddard, L., & Pring, L. (2009). Sensory processing in adults with autism spectrum disorders. Autism,13(3), 215-228. doi:10.1177/1362361309103794\

https://www.cdc.gov/media/releases/2016/p0331-children-autism.html

A link to the presentation made by Eric Busto:

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