With the growing number of individuals with Autism Spectrum Disorder (ASD) reaching the age of consent, health-care providers must be prepared to bridge gaps in their knowledge of ASD. This is especially true for clinicians who may have to determine if a person with ASD has the capacity to engage in end-of-life decision making, complete advance directives, or act as a surrogate decision maker for someone else. This paper provides an overview of the unique characteristics of autism as related to the communication, cognitive processing, and the capability to participate in advance care planning and, when acting as a surrogate decision maker, to consider the values and preferences of others. In addition, we examine the roles and responsibilities of clinician as facilitator of shared health-care decision making communication with the individual who has autism. Consideration is given to determining capacity, planning for atypical responses, the impact or lack of influence of the framing effect, and strategies for presenting information. Finally, we will offer health-care providers information and examples for adapting their existing end-of-life decision-making tools and conversation guides to meet the communication needs of persons with ASD.
BeauchampTLChildressJF. Principles of Biomedical Ethics. 7th ed. New York, NY: Oxford; 2013.
2.
ZerboOMassoloMLQianYCroenLA. A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. J Autism Dev Disord. 2015;45(12):4002–4014. Accessed July 3, 2019.
3.
BaioJWigginsLChristensenDL. Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States. MMWR Surveill Summ. 2018;67(SS-6):1–23. Accessed July 3, 2019.
4.
RouxAShattuucjPCooperBAndersonKWagnerMNarendorfS. Postsecondary employment experiences among young adults with an autism spectrum disorder. J Am Acad Child Adolesc Psychiatry. 2019;52(9):931–939. Accessed July 3, 2019.
5.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Text Revision. Washington, DC: Author; 2000.
6.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed., Washington, DC: Author; 2013.
MahlerK.Interoception: The Eighth Sensory System: Practical Solutions for Improving Self-Regulation, Self-Awareness and Social Understanding. Lenexa, KS: AAPC Publishing; 2017.
12.
SeeleyWWMenonVSchatzberAF, et al.Dissociable intrinsic connectivity networks for salience processing and executive control. J Neurosci. 2007;27:2349–2356.
13.
BushGLuuPPosnerMI. Cognitive and emotional influences in anterior cingulate cortex. Tren Cognit Sci. 2000;4(6):215–222.
LukeLClareICHRingHRedleyMWatsonP. Decision-making difficulties experienced by adults with autism spectrum conditions. Autism. 2011;16(6):612–621.
17.
Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press; 2015.
PollakKIArnoldRMJeffreysAS, et al.Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol. 2007;25(36):5748–5752.
20.
LincăF. The relationship between the risk decision making and framing effect. Roman J Cogn-Behav Ther Hypnos. 2016;3(2):16–28. Ipswich, MA: Academic Search Complete. Accessed June 30, 2018.
21.
NabiRL.Exploring the framing effects of emotion: do discrete emotions differentially influence information accessibility, information seeking, and policy preference?Commun Res. 2003;30(2):224–247.
22.
CruzanV.Director, Missouri Dept. of Health, 497 U.S. 261 (1990).
HeathertonTFKleckREHeblMRHullJG. Social Psychology Stigma. New York, NY: Guilford Press; 2000.
27.
CorriganPWWatsonAC. Understanding the impact of stigma on people with mental illness. World Psychiatry. 2002;1(1):16–20.
28.
BothaMFrostDM. Extending the minority stress model to understand mental health problems experienced by the autistic population. Soc Ment Health. 2018;10(1):20–34. doi:10.1177/2156869318804297. Accessed July 3, 2019.
29.
PuhlRMHeuerCA. Obesity stigma: important considerations for public health. Am J Pub Health. 2010;100(6):1019–1028. Accessed July 3, 2019.
30.
FrithUFrithCD. Development and neurophysiology of mentalizing. R Soc. 2003;358:459–473.
31.
ShahPCatmurCBirdG. Emotional decision-making in autism spectrum disorder: the roles of interoception and alexithymia. Mol Autism. 2016;7(43):2–10. Accessed July 3, 2019.
32.
D’ArgembeauARubyPColletteF, et al.Distinct regions of the medical prefrontal cortex are associated with self-referential processing and perspective taking. J Cogn Neurosci. 2007;19(6):935–944.
33.
Schulte-RutherMGreimelEMarkowitschHJ, et al.Dysfunctions in brain networks supporting empathy: an fMRI study in adults with autism spectrum disorders. Soc Neurosci. 2011;6(1):1–21.
34.
LombardoMVBarnesJLWheelwrightSJBaron-CohenS. Self-referential cognition and empathy in autism. PLoS One. 2007;2(9):e883. Accessed July 3, 2019.
35.
CavannaAETrimbleMR. The precuneus: a review of its functional anatomy and behavioral correlates. Brain. 2006;129:564–583.
36.
DaprettoMDaviesMSPfeiferJH, et al.Understanding emotions in others: mirror neuron dysfunction in children with autism spectrum disorders. Nat Neurosci. 2006;9(1):28–30.
37.
LindSEWilliamsDMBowletDMPeelA. Episodic memory and episodic future thinking impairments in high-functioning autism spectrum disorder: an underlying difficulty with scene construction or self-projection?Neuropsychology. 2014:28(1):55.
38.
SuddendorfTCorballisMC. The evolution of foresight: what is mental time travel, and is it unique to humans?Behav Brain Sci. 2007;30(3):99–313.
39.
SullivanDRSlatoreCG. Advance care planning. Does it benefit surrogate decision makers in the intensive care unit?Ann Am Thoracic Soc. 2015;12(10):1432.
40.
ChiarchiaroJBuddadhumarukPArnoldRMWhiteDB. Prior advance car planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc. 2015;12(10):1528–1533.
