1. Medical Decision Making and Advance Care Planning
Adults with Autism
Medical Decision Making and Advance Care Planning

2. Statistics
1 in 150 children born in 1992 were identified as having Autism Spectrum Disorder (ASD)
1 in 68 children born in 2004 were identified as being on the spectrum
Estimated that 1% of adults meet criteria for ASD
CDC reports 46% of people with ASD have above average intelligence

3. Statistics
2016 Alzheimer’s Disease Facts and Figures report states that 1 in 9 people age 65 and older has Alzheimer’s
The Aging Demographics and Memory Study (ADAMS) reports that 14% of people age 71 and older have dementia

4. Elderly with Autism
Autism is thought to be highly underdiagnosed in the elderly
Experts recommend the Autism-Spectrum Quotient (AQ) self report tool
Autism Questionnaire for Relatives (AQ-R)

5. Informed consent
Physician or other medical provider explains the risks and benefits of a particular procedure
Patient evaluates information in light of values, and either consents or does not consent to procedure

6. Capacity vs. competence
Competence is a legal term
Competence is presumed in adults unless a court deems an individual incompetent
Capacity: (a) recognize there is a decision to be made, (b) understand the needed information, (c) understand the treatment options, (d) understand the likely consequences of each option (i.e. risks, burdens, and benefits), and (e) rationally manipulate the information to come up with a decision consistent with his or her values. (cbdh.org)

7. Incapacity: what it is not
Advanced age
Eccentricity
Refusal of care
Disagreement in high risk situations
Medical diagnosis
Poverty

8. Advance Directives
Patient Self Determination Act requires healthcare institutions to ask a patient if he or she has an advance directive
If patient loses decisional capacity, a surrogate must make the decisions
Ether guided by an advance directive
Or in the absence of an advance directive

9. Surrogate Decision Maker
Directed Decision-making: the individual’s wishes
Delegated Decision-making: an appointed agent
Devolved Decision-making: default hierarchy established by law
Displaced Decision-making: court or administrative authority, e.g. Guardianship

10. Autism Spectrum Disorder (ASD)
Definition: Persistent deficits in social communication and social interaction across multiple contexts
Not on a linear spectrum of “low” and “high”
Skills or challenges fall on multiple axes
May have intellectual disability or normal IQs
ASD may be primarily characterized by differences in information processing

11. Theory of mind
The ability to attribute mental states to self and others in order to understand and predict behavior
Autism seems to involve impairment specific to mentalizing
Tager-Flusberg — some children with autism pass ToM task
May be interpreted in terms of domain-general deficits in executive functions or language

12. Executive functioning
Consists of several mental skills that help the brain organize and act on information
EF enables people to plan, remember things, prioritize, pay attention and get started on tasks
EF helps people use information and experiences from the past to solve current problems

13. Imagination and social anticipation
Intellectually able children with ASD did not systematically differ from TD children in their tendency to report on the anticipated features of a person who will interview them in the future
Children with ASD were less likely to state their response, that is, what they would say to the other person

14. Imagination and Creativity
Creativity pertains to something original—the power of the mind to makes something appealing — use your imagination to create something
Imagination refers to something that is forcefully thought — thinking of things that don’t exist

15. Dementia and ASD
Depression may be a risk factor for developing dementia, may represent a predementia syndrome
Patients with LOD (late-onset depression) and cognitive impairment develop dementia within a few years after onset of depression
Studies show a higher prevalence of depression among children with ASD

16. Advance Care Planning Challenges for people with ASD
Process information differently
Social/legal structures and cognition

17. Challenges Understanding the content of advance directives?
Difficulty conveying preferences?
Who will be surrogate decision maker?

18. Challenges, cont.
Many people have difficulty imagining their future selves
Quality of life
Helping individuals contemplate their future lives
Default to best interest standards that may be informed by poor data and/or lack of understanding

19. Research opportunities
Will future interventions be more or less onerous for people with ASD, e.g. being handled/touched by others-sensory overload
Adults with ASD more or less likely than others to have someone close to them that they trust to make decisions
Adapt advance directives to aid in successful understanding and facilitate completion of directive

20. Ideas and Suggestions Accommodations for sensory issues
Adapt advance care planning discussions
Allow for role play or detailed scenarios