Although older adults with autism spectrum disorder (ASD) have more comorbidities and lower life expectancy than younger patients, there is little research or established protocol to guide the care and treatment of this population.1
How can medical professionals meet the needs of older patients with autism and what can be learned from older patients who were themselves caregivers of adult children with autism? Connie R. Kartoz, PhD, RN, FNP-BC, and Chase Eisenberg, SN, aimed to answer these questions during their presentation at the Gerontological Advanced Practice Nurses Association (GAPNA) annual meeting, held September 27-30, 2023, in New Orleans, Louisiana.
How the Diagnostic History of Autism Informs Health Outcomes
While Leo Kanner first described the signs of ASD in children in a paper published in 1940, it took another 40 years for the diagnosis to be included in the American Psychological Association’s (APA) DSM-3. In the recent DSM-5 TR, ASD is described as a condition characterized by communication deficits in both sending and receiving information, and often includes repetitive behaviors. The current diagnostic criteria note that symptoms must be present during early development. However, the APA, for the first time, acknowledged that symptoms may not fully manifest in an individual until “social demands exceed limited capacities or may be masked by learned strategies in later life.”2
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The focus on the diagnosis of ASD in childhood has influenced research on the disorder for decades, with most studies looking at childhood development and interventions, and less data available on older patients.1,3,4 A literature review by Shattuck et al in 2020, explored the published research regarding adults on the autism spectrum.3 In a PubMed literature search, the group found 23,464 peer-reviewed studies. Of those, only 52 focused on patients aged 18 and older. None of the studies looked at improving the systems of care or interventions for outcomes related to the disorder.
The research that has been done on health outcomes in this population shows that older adults with autism are at higher risk for several comorbidities.3 Parkinson’s disease, seizure disorders, anxiety, depression, and osteoporosis are among the major concerns.5 Life expectancy is also lower by an average of approximately 20 years4, and adults with ASD do not meet criteria for aging well6, reported the researchers.
What Families Want Providers to Know
The primary caregivers for most older adults with autism are their parents. The question of who will care for these patients when their parents are no longer alive is an emerging issue.
Co-presenter Eisenberg highlighted 2 facts from an unpublished survey she and Dr Kartoz undertook of parents with older adult children with autism. According to their survey, 50% of parent caregivers said they needed more support, and only 63% of families reported that they felt a provider always understood their family member with autism.7 The qualitative study by Kartoz, Wells & Munoz focused on parents’ hopes and dreams for their adult children. The themes that emerged from the responses were that parents wanted caring understanding for their children, and for their children to be able to craft a good life of meaningful engagement and shared community, Eisenberg said.
Dr Kartoz reported that the surveyed parents experienced anticipatory grief for what their adult children would experience when they (the parents) were no longer alive. They have experienced years of caregiver stress and anxiety over the future of their children. The parents were also transitioning into older patients themselves, and their life experiences and support needs could be different because of their own caregiver status.8
As Dr Kartoz said, “These parents deeply understand their children. The average age of the adult child in this study was around 50, so they’ve been [decoding their children] for years and they’re quite good at it. So, if you’re taking care of an adult — a senior — with an adult child with autism, they are expending a lot of energy in caregiving and doing that advocacy work…even though we went with a strength-based perspective, these parents are grieving for their adult child, for when the parent will no longer be alive.”
How Health Care Providers Can Improve Outcomes
According to Dr Kartoz, a plan of care for an older adult patient with ASD should include early screening for bone density, thyroid disease, diabetes, and mental health. Complete vaccination and attentive disease management are also indicated in this population. Preventive care should optimally be focused on fall prevention, nutrition, and exercise. Physical activity, while understudied in this group compared to neurotypical patients, is likely to resolve or diminish co-morbidities, yet difficult to implement.9 The American College of Sports Medicine offers an autism exercise specialist course for health care providers that incorporates social and technology strategies to help patients with autism start and maintain an exercise program, noted the presenters.
There is a tool to help create an ASD-accessible practice: the Autism Healthcare Accommodations Tool (AHAT).10 A customizable document, the AHAT allows patients and their families to identify preferred methods of communication and to include additional suggestions that would allow the visit or hospital stay to be more comfortable for the patient (eg, sections on how to make procedures and exams more tolerable). The patient customizes the AHAT through a survey, and the results are meant to be reviewed by health care providers before a visit occurs. Dr Kartoz also mentioned the need for providers to be flexible, to minimize the number of providers present, to allow for quiet and privacy, and to be prepared for a longer or shorter visit than usual.
As parents of patients with ASD age, Dr Kartoz emphasized the need to consider that person’s life stage and the ages of both parent and child, and to discuss with the parents plans for guardianship, respite, and support, as well as care for their anticipatory loss.
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Kartoz CR, Eisenberg C. Older Adults with Autism Spectrum Disorder: Understand, Accommodate, and Improve Outcomes. Presented at: GAPNA annual conference; September 27-30, 2023; New Orleans, LA.
2. Autism Diagnosis Criteria: DSM-5. Autism Speaks. Accessed October 9, 2023. https://www.autismspeaks.org/autism-diagnosis-criteria-dsm-5
3. Shattuck PT, Garfield T, Roux AM, et al. Services for adults with autism spectrum disorder: a systems perspective. Curr Psychiatry Rep. 2020;22(3):13. doi:10.1007/s11920-020-1136-7
4. Weir E, Allison C, Baron-Cohen S. Autistic adults have poorer quality healthcare and worse health based on self-report data. Mol Autism. 2022;13:23. doi:10.1186/s13229-022-00501-w
5. Hand BN, Angell AM, Harris L, Carpenter LA. Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism. 2020;24(3):755-764. doi:10.1177/1362361319890793
6. Hwang YIJ, Foley KR, Trollor JN. Aging well on the autism spectrum: the perspectives of autistic adults and carers. Int Psychogeriatr. 2017;29(12):2033-2046. doi:10.1017/S1041610217001521
7. Roux AM, Rast JE, Garfield T, Shattuck P, Shea LL. National Autism Indicators Report: Family Perspectives on Services and Supports. Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University; 2021. Accessed October 30, 2023. https://drexel.edu/~/media/Files/autismoutcomes/publications/NAIR%20Family%202021%20Final.ashx
8. Herrema R, Garland D, Osborne M, Freeston M, Honey E, Rodgers J. Brief report: what happens when i can no longer support my autistic relative? Worries about the future for family members of autistic adults. J Autism Dev Disord. 2017;47(11):3659-3668. doi:10.1007/s10803-017-3254-
9. Healy S, Brewer B, Laxton P, et al. Brief report: perceived barriers to physical activity among a national sample of autistic adults. J Autism Dev Disord. 2022;52(10):4583-4591. doi:10.1007/s10803-021-05319-8
10. AASPIRE Healthcare Toolkit for Autistic Adults. Accessed October 20, 2023. https://autismandhealth.org/?p=home&theme=ltlc&size=small
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