Improving patient care for autistic individuals through a neurodiversity lens

By: Amy K. Izuno-Garcia, PhD & Jeremy Jabbour, MS

The prevalence of autism spectrum disorder (ASD) is increasing, with childhood diagnoses having increased by over 400% since the beginning of the century: 1 in 36 children in the United States are now recognized as autistic (Maenner et al., 2023). It is unclear to what extent this increase is attributable to the condition genuinely becoming more prevalent, and to what extent it is attributable to changes in diagnosis, conceptualization, and service– regardless, with each passing year healthcare providers are more likely to encounter patients who carry a diagnosis of ASD. Consequently, understanding the needs and strengths of this population will become increasingly important for promoting wellbeing and providing affirming, high-quality care for autistic people of all ages.

One framework that aids with better engaging autistic patients is neurodiversity: the concept that conditions like autism are normal variants in human neurology (Jaarsma & Welin, 2012; Singer, 1998) and that the unique challenges faced by autistic individuals often stem from difficulty adjusting to a society that is not accommodating to their cognitive differences, rather than stemming from inherent, pathological deficits (Izuno-Garcia et al., 2023). Relatedly, ASD has historically been defined as a developmental disorder characterized by deficits in social communication and interaction, and the presence of restricted, repetitive patterns of behaviors and interests; viewing ASD from a neurodiversity lens would instead characterize ASD as a suite of developmental differences in these domains. Impairment and distress may then incidentally arise from an autistic patient attempting to navigate interactions and expectations from non-autistic persons. Subsequently, client-centered care should focus on supporting autistic patients through these challenges, rather than viewing autism as a core pathology that requires treatment in-itself.

With this in mind, below are several general recommendations for providing neurodiversity-affirming care for patients on the autism spectrum:

General Tips

• Use identity-first language instead of person-first language, e.g., “autistic people”, “she’s autistic”, rather than “people with autism”, “she has autism”. (Bradshaw et al., 2021)
• Describe a patient’s areas of difference, challenge, or difficulty, rather than “deficits”. (Brown et al., 2021)
• If discussing a diagnosis of ASD, describe strengths and differences of the patient, and avoid using functioning labels like “low-” or “high-functioning”. (Bradshaw et al. 2021)
• When completing in-person appointments, consider the sensory environment (e.g., dimming bright lights, avoiding strong scents, etc.)

Assessment

• Use multiple evaluation methods to capture possible camouflaging of autistic traits, or ask about camouflaging specifically (e.g., “Do you purposefully sit on your hands to avoid flapping your hands when you’re excited?”), rather than make assumptions based on observations. (Izuno-Garcia, 2023)
• Decrease number of transitions during evaluation appointments

Intervention

• For either your own practice or when making recommendations for specialty providers, consider interventions that use behavioral principles flexibly and value patient autonomy, such as naturalistic developmental behavioral interventions (NDBIs, e.g., Pivotal Response Training, the Early Start Denver Model, Joint Attention Symbolic Play Engagement and Regulation)
• Relatedly, avoid treatment goals that encourage the patient to be more neurotypical (e.g., increasing use of eye contact), unless desired/proposed by the patient (Nicolaidis et al., 2015; Shuck et al., 2021)

In conclusion, the neurodiversity paradigm is valuable for improving care for patients on the autism spectrum, by emphasizing strengths and abilities rather than deficits. In light of Autism Acceptance Month, providers should take steps to incorporate neurodiversity into their conceptualization, assessment, and recommendations for support for autistic individuals across the lifespan.

References

Bradshaw, P., Pickett, C., van Driel, M. L., Brooker, K., & Urbanowicz, A. (2021). ‘Autistic’ or

‘with autism’? Australian Journal of General Practice, 50(3), 104-108.

Brown, H. M., Stahmer, A. C., Dwyer, P. & Rivera, S. (2021). Changing the story: How

diagnosticians can support a neurodiversity perspective from the start. Autism, 25(5),

1171-1174. https://doi.org/10.1177/13623613211001012

Izuno-Garcia, A. K., McNeel, M. M., & Fein, R. H. (2023). Neurodiversity in Promoting the

Well-Being of Children on the Autism Spectrum. Child Care in Practice, 29(1), 54–67.

https://doi.org/10.1080/13575279.2022.2126436

Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: reflections on the claims

of the neurodiversity movement. Health Care Analysis: HCA: Journal of Health

Philosophy and Policy, 20(1), 20–30. https://doi.org/10.1007/s10728-011-0169-9

Maenner, M. J. (2023). Prevalence and characteristics of autism spectrum disorder among

children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11

sites, United States, 2020. MMWR. Surveillance Summaries, 72.

Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., Kapp,

831. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824- 439 831.

Singer, J. (1998). Odd people in: The birth of community amongst people on the autism

spectrum: A personal exploration of a new social movement based on neurological diversity. An Honours Thesis presented to the Faculty of Humanities and Social science,

the University of Technology, Sydney, 1998.

Shuck, R. K., Tagavi, D. M., Baiden, K. M. P., Dwyer, P., Williams, Z. J., Osuna, A., Ferguson,

10. R., Munoz, M. J., Poyser, S. K., Johnson, J. F., & Vernon, T. W. (2021). Neurodiversity and autism intervention: Reconciling perspectives through a naturalistic developmental behavioral intervention framework. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05316-x

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