Atypical Awareness - Responding to the Educational Needs of Patients with Autism Spectrum Disorder

by Elizabeth Yett, Pharm.D., PGY2 Ambulatory Care Pharmacy Resident, University of Mississippi School of Pharmacy

In 2018, 1 in 59 children had a diagnosis of autism spectrum disorder (ASD) by the age of 8 in the United States, based on the DSM-5 criteria.¹ However, we are unable to determine a reliable estimate of the prevalence of ASD among adults. Given that there is a spectrum of characteristics that a patient with autism might display, healthcare practitioners have an obligation to identify patients who may have ASD and adapt patient education strategies to meet their needs. As a resident, I have had the pleasure of interacting with 2 pediatric patients (to my knowledge) with autism. They are quite different in their ability to receive information and respond to questions. One patient is completely non-verbal, while the other prefers to play games on his phone rather than engage in a conversation — just like a typical teenager. Reflecting on my own experiences, it is no wonder that people with disabilities, including patients with autism, face significant health challenges and health care inequities. Patients with disabilities report lower satisfaction with health care, lower health self-efficacy when navigating the healthcare system, and lower use of recommended preventative care services.²

Effective patient-provider communication is essential in improving health outcomes. Yet if we do not know (or understand) the patient’s specific educational needs, how can we be certain we are meeting them? Luckily, the Academic-Autistic Spectrum Partnership in Research and Education (AASPIRE) has created the Autism Healthcare Accommodations Tool (AHAT) to assist us in understanding the needs and preferences of people with ASD.³ Reflecting on the ADDIE model of instructional design assists with the analysis of each patient’s individual needs and how best to communicate and interact with the patient. Patients and/or their caregivers can create a personalized accommodations report that includes information to assist with the patient’s preferred communication style, tips to help patients answer questions, and how to approach physical exams. The AASPIRE website also includes great information for healthcare providers regarding the diagnosis of ASD as well as legal and ethical considerations in caring for patients on the autism spectrum.

Finding the most effective communication mode for a patient with ASD can be challenging, especially if it involves changing your usual communication style. Although patients with autism have unique educational needs – indeed, all patients do for that matter – it can be beneficial to understand a few ASD-related characteristics that often impact communication and learning. This recognition, along with a few recommended strategies to accommodate the patient with ASD, can facilitate a more effective patient interaction (Table 1). Along the same lines, this can help you implement ADDIE with an effective design and development of instructional materials that are most appropriate for the patient.

Table 1

ASD-Related Characteristic	Instructional strategies/tips
Tendency to take language literally and a need for precise language Tendency to be visual thinkers	Avoid figures of speech, broad questions, and vague statements Be concrete and specific with questions Show patients lists of symptoms or visual scales to assist with the assessment Create a visual schedule for the patient for when to take his or her medications
Difficulty understanding and carrying out nonverbal communication	Recognize that patients may struggle to understand your body language or tone of voice Respect a patient’s methods of nonverbal communication
Repetitive behaviors (self-stimulatory behaviors or “stimming”) - including hand-flapping, rocking, jumping, squealing, pacing, echoing, and obsessing	Recognize these behaviors as outlets for anxiety and energy Aim to thoughtfully provide an environment to minimize potential stressors Play soothing music during encounters, teach mindful breathing, reinforce appropriate behavior
Need for consistency Limited awareness of time Difficulties organizing	Help patients set up an alarm for when to take medication Link the act of taking medications to specific parts of their daily routine Help patient or caregiver set up pillbox or organize medications Provide worksheets or handouts that can be used to keep track of symptoms or concerns between visits
Adapted from: AASPIRE Healthcare Toolkit. Available at: http://autismandhealth.org/.

 

It is important to evaluate current practices in place in order to make positive improvements. In England, the perspectives of 40 families of children with ASD were gathered through a survey to gain a better understanding of their healthcare experiences.⁴ Families noted the need for healthcare providers to be more knowledgeable and trained about the heterogeneity of ASD, and to view families as allies in facilitating during patient encounters. Earlier this year, Children’s Hospital and Medical Center of Omaha launched a new program called PATCH (Patient Assistance Team at Children’s Hospital & Medical Center) that intends to do just that. PATCH creates a pathway that facilitates communication between parents of ASD-impacted patients and hospital staff. This helps ensure patient needs are clearly and efficiently identified and necessary modifications can be made to the care plan. Wouldn’t it be amazing if a similar program could be implemented at all medical centers!

When working with an unfamiliar patient population, we have an obligation to educate ourselves to best serve their needs. This can include finding appropriate resources (listed below), seeking opportunities to work with or volunteer with patients with ASD, and demonstrating an interest in developing the diversity of our patient care skills. In this way, we can take steps to minimize disparities experienced by patients with autism by improving their satisfaction with healthcare and increasing their self-efficacy.

The main character in the television program The Good Doctor is a physician with autism. One of the other characters on the show, fighting to save the main character’s job, wisely states, “Aren’t we judged by how we treat people? I don’t mean as doctors, I mean as people. Especially those who don’t have the same advantages that we have.” I think we can all agree that it is impossible for us to always understand how to best interact with patients, especially those with ASD. There are always opportunities for improving communication with the patient, family, and other providers to create environments that address their needs. While we shouldn’t treat patients differently based on their disease states or disabilities, we should adjust to their needs. It might not always be easy to interact with patients with autism, but as educators, we need to do our part to achieve the most positive experiences for our patients.

Select readings and resources about Autism Spectrum Disorder:

• Straus J, Coburn S, Maskell S, Pappagianopoulos J, Cantrell K. Medical Encounters for Youth With Autism Spectrum Disorder: A Comprehensive Review of Environmental Considerations and Interventions. Clin Med Insights Pediatr. 2019;13.
• “Autism related guidelines for healthcare providers.” Autism Speaks. Accessed 24 March 2020. https://www.autismspeaks.org/science-news/autism-related-guidelines-healthcare-providers
• “What is autism and how to get involved.” Autism Society. Accessed 22 March 2020. https://www.autism-society.org/
• “Autism news and resources: from autistic people, professionals, and parents.” Thinking person’s guide to autism. Accessed 24 March 2020. http://www.thinkingautismguide.com/
• “Caring for Children with Special Health Care Needs.” National Resource Center of Health and Safety in Child Care and Early Education. Accessed 24 March 2020. https://nrckids.org/CFOC/Special_Needs

References:

1. Autism spectrum disorder (ASD) Surveillance Summaries. Centers for Disease Control and Prevention. 2018; 67(6):1–23.
2. Nicolaidis C, Kripke CC, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am 2014; 98(5): 1169–1191.
3. AASPIRE Healthcare Toolkit. AASPIRE. Accessed 23 March 2020. https://autismandhealth.org/
4. Kouo J. Seeking Patient-and Family-Centered Care: The Experiences of Families of Children with an Autism Spectrum Disorder. Autism Open Access 2020; 10: Article 247.