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Aging Well with Autism

Introduction

Recently, awareness of the need for services for individuals with autism has considerably grown. This is reflected in an increase in the number of research papers and advocacy efforts addressing this topic; however, the majority of newly-established services have focused on autistic children and adolescents. Only a small proportion of autism-related programs specifically address issues affecting adults with autism.

For more than a decade, it appears that there has been a growing number of individuals diagnosed with autism. This has principally arisen because of changes in diagnostic criteria coupled with a combination of genetic and environmental factors  that have resulted in a spectrum comprising a larger population. Thus, there are a significant number of adults already diagnosed with autism, with many more entering adulthood in the coming years. Yet so little is known about how best to serve this adult autistic population, particularly as they enter their senior years. Research into the complex needs for this phase of life is needed in order to optimize aging outcomes.

There are many factors to consider when creating an environment for a full and rewarding life for adults with autism. These include housing, healthcare, social and recreational opportunities, tailored to the unique abilities, strengths, interests, and desires of each individual, and their own ideas about how to find fulfillment in life.   These considerations argue strongly for the development of a new research and advocacy field: “Aging Well with Autism,” which will require the active involvement of autistic individuals and their families.

One of the challenges of researching the lives of older adults with autism is that they cannot be readily identified. Data is lacking regarding the numbers of adults over the age of 30 with autism in the US, and where or with whom they are living. A first step in conducting any in-depth assessment of their unmet needs and those of their families is to find these people. Once identified, an additional challenge will be to secure their participation in research. Some headway will be possible initially because of existing statewide autism databases but a more concerted effort will likely be required. Useful insights will no doubt arise from examining the experiences of models being developed in other countries, particularly those in Scandinavia where national cohorts have been established and are available to researchers worldwide.

Autism Symptoms Across the Lifespan

It is generally agreed that most individuals with autism will require developmentally appropriate services and supports as they move through adulthood. Beyond that, it is essential to develop a better understanding of the course of autism over the lifespan with regard to core symptoms and underlying biological processes including neuropsychiatric indications, physical health issues, and changes in the nervous system as autistic individuals age. A profound question needing further research is how autism-related developmental trajectories relate to typical aging processes over time. Some researchers report improvements in some of the debilitating aspects of autism suggesting that there may be some ongoing compensatory mechanism acting well into adulthood. With regard to living status, however, studies have shown somewhat more dismal outcomes related to disappointing formal educational attainments, obstacles to achieving independent living status, loss of autonomy, irregular employment histories, and deep social isolation.

References

Esbensen, A.J., Seltzer, M.M., Bodfish, J.W.(2009). Age-related Differences in Restricted Repetitive Behaviors in Autism Spectrum Disorders. J Autism Dev Disord, 39 (1), 57-66.

Howlin, P., Goode, S., Hutton, J., Rutter, M. (2004). Adult outcome for children with autism. J Child Psychol Psychiatry, 45(2), 212-229.

Seltzer, M.M., Krauss, M.W., Shattuck, P.T., Orsmond, G., Swe, A., Lord, C. (2003). The Symptoms of Autism Spectrum Disorders in Adolescence and Adulthood. Journal of Autism and Developmental Disorders, 33(6), 565-581.

Shattuck, P.T., Seltzer, M.M., Greenberg, J.S., Orsmond, G.I., Bolt, D., Kring, S., Lounds, J., Lord, C. (2007). Change in Autism Symptoms and Maladaptive Beahviors in Adolescents and Adults with an Autism Spectrum Disorder. J Autism Dev Disord, 37(9), 1735-1747.

Transitions in Adulthood

A time of great stress for families is when young people exit the school system, where they have received extensive support from local school-funded services under federal special education law. As they enter young adulthood, there is great uncertainty over how much families can expect in the way of support. This is also a time when important life decisions are made about an individual’s housing, finances, legal guardianship, health care, and daily activities.  What types of social structures and supports systems should be in place to care for these individuals and provide opportunities for recreation, employment, personal growth, and fulfillment? How will they occupy their days? Who can provide the proper health care expertise? What factors determine whether an individual will transition successfully into the next phase of adult life? What kinds of programmatic interventions and community supports can help shape a higher quality of life for an individual’s multiple decades of adult living? These are some of the many questions facing families of individuals aging with autism.

A frequently expressed and major concern for parents of autistic individuals is that their son or daughter will not receive the same level of care once the parents have become too frail. Aging parents are faced with anxiety over the reality that they are likely to predecease their child who is dependent on them. How can the community provide better support to these families and aid in early planning for the transition to other caregivers?  Where will the aging adult live once their caregivers have passed? Who will exercise guardianship when parents are no longer around?

One novel person-centered approach to building a lifelong support network around individuals with disabilities is the Star Raft model, an action model for building enduring, on-purpose, creative circles of support that identify and mobilize people’s gifts and capacities and tap into an abundant set of community connections.

Finally, a not very well-researched transition occurs when an autistic individual approaches older adulthood. Many of the same important life questions considered in the transition to young adulthood must be revisited. In addition, issues relevant to retirement, senior life, bereavement, and end-of-life planning must be addressed by both autism and gerontology experts.

References
Friedman NDB, Erickson Warfield, M., & Parish, S.L. (2013). Transition to adulthood for individuals with autism spectrum disorder: Current issues and future perspectives. Neuropsychiatry, 3, 181-192.

UMKC Institute for Human Development, UCEDD. (2012-2017). Charting the Lifecourse. https://www.lifecoursetools.com/

Wetherow, David. The Star Raft. https://thestarraft.com/

Education and Employment

Promising post-school avenues which might be considered include postsecondary education, vocational training, volunteerism, and various employment arrangements. Lifelong learning, enriched educational environments, employment, socialization and community inclusion have the potential to improve quality of life and opportunities for growth over the lifespan.

Some individuals with autism approaching college age are able to attend college, but they face many challenges associated with typical university life, such as time management, independent living, dorm life, socializing, and separation from parents and friends. It is encouraging that programs with a specific aim of helping autistic adults transition into college life and providing them with life skills to live independently are being developed.

Few adults with autism are employed and many are underemployed. However, over the past several years, a number of large employers have initiated programs to improve employment opportunities for the adult autism community. Autistic individuals often have unusual and very specific abilities that might find a home in particular industries if a cadre of specialists could be trained to match up these skills with job requirements.

References

3LPlace (2019). 3LPlace Lifelong Learning Modules. http://www.3lplace.org/index.php/learning/modules/

Barnhill, G.P. (2007). Outcomes in Adults with Asperger Syndrome. Focus on Autism and Other Developmental Disabilities, 22(2), 116-126.

Heller, T. (2013). Self‐Determination, Aging, and Family Supports (Aging Well With Autism (55+)). http://nlmfoundation.org/wp-content/uploads/2013AgingWellwithAutismSummaryFinal_000.pdf 

Heller, T. & Sorensen, S. (2013). Promoting healthy aging in adults with developmental disabilities. Developmental Disabilities Research Reviews: Special issue on aging, 18(1):22-30.

Institute for Community Inclusion at the University of Massachusetts Boston. Think College. https://thinkcollege.net/

SAP (2019, February 14). Diversity & Inclusion at SAP: Autism at Work. https://news.sap.com/2016/12/diversity-inclusion-at-sap-autism-at-work/

Specialisterne. Inclusion through neurodiversity. https://specialisterneusa.com/

Isolation

Many people on the spectrum experience isolation due to social and communication difficulties. The problem is only compounded by the limited opportunities for social and community engagement in adulthood. This is supported by research on the aging population of individuals with developmental disabilities. This isolation will almost certainly worsen with age.

The depression associated with isolation and loneliness can have a major impact on mortality, morbidity, and quality of life. Caregivers need to be attuned to the signs and symptoms of isolation and depression in older autistic individuals. Participation in inclusive recreational activities in faith or religious communities, senior centers, sports clubs, and community centers is known to be successful at overcoming this kind of debilitating depression.

Establishing and maintaining friendships and social relationships with those other than family members may not come easily to those with autism, particularly older adults, who don’t have regular access to accepting and supportive social environments. An interesting program developed by David Wetherow and called Star Raft seeks to build a lifelong “circle of support” around adults with developmental disabilities (DD). Star Raft proponents believe that a great untapped capacity for voluntary friendship and support exists in most communities.

How might access to technology and digital communication tools, including social media, help older people with autism to avoid social isolation? The advantages of computer-based approaches to improving social communication are intrinsically adaptable to an individual’s sensory challenges.

References
AARP Foundation. (2020). Connect2Affect. https://connect2affect.org/

Amado, A.N. (2013). Friends: Connecting people with disabilities and community members. Minneapolis, MN: University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living.

Coyle, C., and Dugan, E. (2012). Social Isolation, Loneliness and Health Among Older Adults. Journal of Aging and Health, 24(8), 1346-1363.

Massachusetts Department of Developmental Services and The Arc of Massachusetts. (2018). Widening the Circle: Expanding opportunities for friendships between people with and without disabilities. https://thearcofmass.org/friendship

National Autistic Society.  (2018). Social Isolation and Social Interaction. https://www.autism.org.uk/about/communication/social-isolation.aspx#

Social and Recreational Opportunities and Community Inclusion

The lack of demographic information about autistic adults and their families is starkly evident in the recreation sector. It is simply not known what adults with autism over the age of 30 do with their free time, what they would like to do, or how to reach them. So much more information is needed and the input of autistic adults is especially important in this area.

What are autistic individuals hoping for in their adult lives in terms of social and recreational opportunities to make their daily experiences interesting and fulfilling? What specific types of community and recreational programs might ensure that autistic adults can feel engaged and productive each day? How can we offer a range of interesting, age-appropriate activities that may result in continuing personal development and skill building? How might church/synagogue communities or other local civic organizations contribute to a meaningful social life? Recreation can be important for people with autism, providing opportunities to meet new people, practice social skills, improve communication skills, engage in physical activity, learn new and interesting skills, and increase confidence, independence, and motivation. Importantly, recreation can increase satisfaction and quality of life and promote inclusion.

Successful community inclusion depends heavily on educating the general public, first responders, and emergency personnel, regarding the specific challenges of living with autism and how best to communicate and interact with individuals with autism. At one time, police officers who did not recognize or understand autism may have treated autistic individuals harshly, thinking these citizens were simply being disrespectful or oppositional.  Typical behaviors of people with autism who are upset, such as stimming, running away, or refusing to comply with a stern direction, may confuse police officers who then might respond with force; however, as the result of committed autism advocates this is rapidly changing.

Many providers argue that one of the greatest barriers to increasing community inclusion is the dire shortage of staff in the developmental disability field. Individuals often need staff support to be able to get out into the community. When any agency is short-staffed, time in the community is often the first thing to be removed. Because of this, many advocacy organizations have made salary increases for the developmental disability workforce one of their top legislative priorities.

References

Access Recreation Boston. Connecting people with disabilities to accessible recreation opportunities. https://accessrec.org/

The Arc of South Norfolk’s Family Autism Center. ALEC (Autism and Law Enforcement Education Coalition). https://www.arcsouthnorfolk.org/alec

Spirituality and Cultural Life

Participation in a community of faith can provide an immense source of inner strength, spiritual growth, learning, and social support for people of all ages; it can also serve as a source of valuable social capital that can be tapped for practical supports and access to a more inclusive community. Some congregations have made the crucial leap from serving autistic children in religious education programs to welcoming autistic adults as fully contributing members of a church, temple, mosque, or other house of worship. These congregations are dedicated to developing the unique gifts of all their members by experimenting with initiatives that match autistic adults with meaningful roles in the congregation. Other congregations harness their substantial networking power to locate jobs and volunteer placements in the larger community for their members with autism and other developmental disabilities.

Individuals and families seeking this experience of genuine belonging should look for those particular congregations in every denomination and/or faith community that clearly “get it” and are leading the way on full religious and community inclusion: these can serve as valuable role models for one’s own faith community. Such congregations increasingly are working together within and across denominations to share best practices and spread the message of universal welcome. The vision of this movement is that all congregations eventually will live out the core teachings of their respective faiths to recognize and honor the sacred in each and every individual.

References

Carter, E.W. (2007). Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families & Congregations. Baltimore, Maryland: Brooks Publishing Co.

Gaventa, W.C. (2018). Disability and Spirituality: Recovering Wholeness.  Waco, Texas: Baylor University Press.

Resources

Autism & Faith Resources. Autism Society

Autism and Faith: A Journey into Community

All Belong Center on Inclusive Education

Collaborative on Faith and Disability

Enabled Muslim

Institute on Theology and Disability Putting Faith to Work

Ruderman Synagogue Inclusion Project

Housing

One of the most pressing concerns of caregivers is how to identify, finance, and plan for appropriate long-term housing for autistic adults. The lack of comprehensive, accessible housing that adequately meets the needs of adults with developmental disabilities has resulted in many living at home with their aging parents, who may have problems of their own, or in unsuitable housing failing to match their reasonable expectations for independence and privacy. Parents of adult children with disabilities have the additional responsibility of making plans to provide for their loved ones when they die, often leading to a situation where adults end up living with a sibling or into a state-funded group home. Often this is the first time in the individual’s life that s/he has left the family home, and can be a traumatic experience at a time when they are dealing with deep bereavement. In many residential settings, adults with autism have limited control over their daily lives and little say in how their services are provided. It is anticipated that as more communication devices become available, individuals with autism will be able to take a more active role in the decision-making process regarding their everyday existence.

There are some promising developments on the horizon in the field of community housing for long-term elder care, where multigenerational and shared responsibility are purposefully incorporated. Senior life planning is another area where many creative ideas are surfacing as society confronts changing demographics and these models could provide increased stability and social structure in the lives of those aging with autism. A conspicuous example would be intergenerational housing which would include a number of affordable units designated for aging parents, or siblings, and their adult autistic relative.  Then when the last family member dies, the adult would still be able to remain in the unit with its community support structure thus avoiding stress at a traumatic period in one’s life.

Policymakers could certainly learn from the aging-at-home movement in terms of what environmental, physical, and adaptive changes are necessary to enable persons to remain in their own homes as they begin to navigate the problems of an aging mind and body. “Smart homes” featuring automated virtual assistants could provide a level of safety and independence enabling individuals the opportunity to manage their own personal space.

References

Arnold, C.K., Heller, T. & Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and Developmental Disabilities, 50(5), 373-382.

Autism Housing Pathways. http://autismhousingpathways.org/

Eheart, B. K., & Power, M. B. (2001).  From despair to care: A journey of the old and the young at Hope Meadows.  Children and Youth Services Review, 23 (9/10), 691-718.

Eheart, B. K., Power, M. B., & Hopping, D. E. (2003).  Intergenerational programming for foster-adoptive families:  Creating community at Hope Meadows.  Journal of Intergenerational Relationships:  Programs, Policy and Research, 1(1), 17-28.

Eheart, B.K., Hopping, D., Power, M.B., Mitchell, E.T., & Racine, D. (2009). Generations of Hope Communities:  An intergenerational neighborhood model of support and service. Children and Youth Services Review, 31(1), 47-52.

First Place AZ. (2019). Building Community at First Place–Phoenix. https://www.firstplaceaz.org/

Heller, T., Arnold, C.K., van Heumen, L., McBride, E.L., & Factor, A. (2012). Self-directed support: Impact of hiring practices on adults with intellectual and developmental disabilities and families. American Journal on Intellectual and Developmental Disabilities,117(6), 464-477.

Heller, T. & Harris, S.P. (2011). Disability across the life course. Thousand Oaks, CA: Sage.

Factor, A. &  Heller, T. (2013). Aging and Self-Determination: Research to Practice Brief. National Gateway to Self-Determination, University of Missouri and University of Illinois at Chicago.

Heller, T., Schindler, A., Palmer, S., Wehmeyer, M., Parent, W., Jenson, R., Abery, B., Geringer, W.,  Bacon, A. & O’Hara. (2011). Self-determination across the life span: Issues and gaps. Exceptionality, Special Issue: Promoting Self Determination, 9(1), 31-45.

L’Arche USA. (2019). L’Arche USA.  https://www.larcheusa.org/

Power, M. B., Eheart, B. K., Racine, D., Karnik, N. S. (2007). Aging well in an intentional intergenerational community:  Meaningful relationships and purposeful engagement. Journal of Intergenerational Relationships: Programs, Policy and Research, 5(2), 7-25.

Madison House Autism Foundation. Autism Housing Network. http://www.autismhousingnetwork.org/

Power, M. B., Mitchell, E. T., Eheart, B. K., & Hopping, D. (2011). The power of language:  Practice in a shared site.  Journal of Intergenerational Relationships, 9(3), 281-292.

Specialized Housing, Inc. (2019). Housing for Adults with Additional Needs. http://specializedhousing.org/

Guardianship and Financial Planning

Any consideration of the broad mandate families face for providing a well-lived life with autism throughout the lifespan must allow for not only a legally recognized chain of responsibility for making important decisions about the welfare of an adult with autism (i.e., guardianship) but also a financial plan that supplements whatever entitlements the person receives. Parents are often faced with the challenge of how best to provide consistency and financial security for their family members with autism once family caretakers are gone. Beyond writing a letter of intent with detailed instructions, how can family members ensure that their loved ones with autism will have the resources to be adequately cared for and access to government benefits that they are entitled to? Government services such as Social Security Income and Social Security Disability Insurance and Medicaid provide some level of security but when circumstances allow, many families also choose to supplement government resources with their own funds.

Increasingly, parents have begun to explore Supported Decision Making (SDM) as an alternative to guardianship for individuals with intellectual or developmental disabilities. People with disabilities may need assistance making decisions about living arrangements, health care, lifestyles and financial matters, but they don’t necessarily need a guardian to make those decisions for them. With SDM, adults with disabilities make their own important life decisions with help from a known, trusted group of supporters. Supported Decision Making involves an intensive, person-centered planning process and an agreement by the person with a disability and the people that are chosen (by person with disability) to help them make decisions.

References

Agoratus, L. (2019). How Supported Decision-Making Can Help Family Caregivers. https://autismspectrumnews.org/how-supported-decision-making-can-help-family-caregivers/

Autism Speaks. Financial Planning Toolkit. https://www.autismspeaks.org/tool-kit/financial-planning-tool-kit

DeBrine, E., Caldwell, J., Factor, A., Heller, T., Keiling, K., & Kramer, J. (2009). The future is now: A future planning training curriculum for families and their adult relatives with developmental disabilities (Rev. 2nd Ed.). Chicago: Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.

The Arc of the United States. The Center for Future Planning. https://futureplanning.thearc.org/

Post-Retirement Life

As with so many other issues, what happens when older autistic adults who have been working or attending day programs are ready to retire is a question that has not been well thought out or understood.

The transition to post-retirement years for adults with autism can be challenging. Adherence to usual routines, difficulty multitasking, and the challenges of establishing and maintaining social relationships can make the transition to retirement difficult for those with autism.  Older people with autism may need extra guidance, care and assistance to understand how to move beyond school and work life. They may require additional assistance with processing information, setting up routines, adapting to changes in physical well-being, adapting to changing domestic needs, and daily communications issues.

What makes for a meaningful life in the post-retirement years? What types of community programs can be developed aimed at reducing isolation in this population? Any plan to prepare for retirement should begin with identifying areas of interest to the individual and areas that are also motivating and should focus on providing new structure and routine, complementing the individual’s learning style.

References

Stancliffe RJ, Bigby C, Balandin S, Wilson NJ, Craig D. (2015). Transition to retirement and participation in mainstream community groups using active mentoring: a feasibility and outcomes evaluation with a matched comparison group. J Intellect Disabil Res., 59(8), 703-18.

Medical & Health Concerns

Persons with autism face health problems as they age like everybody else, and may have trouble explaining what ails them to physicians, who themselves are often unprepared to deal with problems unique to this population. Families have expressed frustration that primary care physicians are not adequately trained to work with autistic adults, resulting in many adults continuing to be treated by their pediatricians. Training medical professionals in varied medical specialties to adapt, understand, and care for patients with autism as they age is crucial to ensuring that this population receives the care it needs.

Scant research exists on whether older adults with autism have special medical care needs and concerns. It is possible that the detrimental effects that occur as a normal part of aging may have a greater impact on autistic adults; however, at this point, not enough is known. Many older adults with autism experience a lifetime of health disparities: a lifetime of inadequate care, inadequate health promotion, and inadequate access. There is an urgent need for more research focused on typical aging processes in adults with autism to help individuals, their families, caregivers, and service providers with future planning.

Common issues generally noted in studies of older autistic adults include anxiety disorders, depression, obsessive compulsive disorder, attention deficit hyperactivity disorder, oppositional defiant disorder, and Tourette syndrome. Obesity, poor diets, long-term impact of medications/nutritional supplements, sleep disorders, seizures, abuse and self-injury have also been identified as important secondary health issues for this population.

A recent study found that adults with autism had increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive-compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Some research examining the prevalence of clinical problems in older autistic adults has pointed to a need for greater support for severe behavioral problems, particularly self-injurious, disruptive and destructive behavior. As a result of older adults with autism experiencing a lifetime of healthcare disparities, inadequate care, and inadequate access to wellness and exercise programs, many live with untreated conditions or the drug-related effects of a wrong diagnosis.

The American Association on Intellectual and Developments Disabilities (AIDD) reports that sexual abuse is an important and overlooked problem for aging individuals with DD.  While the topic of sexuality has received increased attention in the fields of intellectual and developmental disabilities generally, less consideration has focused on the needs of individuals with ASD. It is important to provide quality and individualized sexuality education for individuals with autism because of their difficulty with interpersonal relationships, and to train social workers to recognize the signs of such abuse.

As noted in the American Association on Intellectual and Developmental Disability’s (AAIDD) Position Statement on Aging, “disability-based organizations have historically not planned for the challenges faced by older people with intellectual and/or developmental disabilities and are not prepared to address these unique needs, including providing education and training on mitigating the risk of elder abuse and neglect for a potentially more vulnerable population of older people.”

Increased collaborations between the disability and aging communities are encouraged to help communities better respond to the needs of older adults with disabilities as well as increased opportunities for training to help professionals better identify risk factors for abuse in vulnerable populations.

References

American Association on Intellectual and Developmental Disabilities. (2008). Aging: Joint Position Statement of AAIDD and The Arc. https://aaidd.org/news-policy/policy/position-statements/aging#.WSJAVRMrKRs

Collins-Bride, G. (2011). Health Care Maintenance Guidelines for Adults with Developmental Disabilities. http://developmentalmedicine.ucsf.edu/odpc/docs/pdf/practice_pearls/health-care-maintenance-guidelines-adults-with-dd.pdf

Croen, L.S., Zerbo, O., Qian, Y., Massolo, M.L., Rich, S., Sidney, S., Kripke, C. (2015). The health status of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 814-823.

Ghaziuddin, M., & Safar, S. Psychiatric Comorbidity of Adults with Autism Spectrum Disorders (2008). Clinical Neuropsychiatry, 5(1), 9-12.

Heller, T. (2013). Self‐Determination, Aging, and Family Supports (Aging Well With Autism (55+)). http://nlmfoundation.org/wp-content/uploads/2013AgingWellwithAutismSummaryFinal_000.pdf

Heller, T. & Sorensen, S. (2013). Promoting healthy aging in adults with developmental disabilities. Developmental Disabilities Research Reviews: Special issue on aging, 18(1):22-30.

Kats, D., Payne, L., Parlier, M., Piven, J. (2013). Prevalence of selected clinical problems in older adults with autism and intellectual disability. Journal of Neurodevelopmental Disorders, 5(1), 27.

Krahn, G.L., Hammond, L. and Turner, A. (2006). A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev., 12(1), 70-82.

Krogman, L. (2005).The Nurse Practitioner’s Role in Caring for Adults with Developmental Disabilities. Community Health Care for Adults and Elders with Developmental Disabilities Research and Training. https://depts.washington.edu/aedd/nurse_pract_text.htm

Lachs, D. (2017). Elder Abuse and Older Adults with Intellectual and Developmental Disabilities. https://nyceac.org/elder-abuse-older-adults-intellectual-developmental-disabilities/

Massachusetts Department of Developmental Services. (2012). Massachusetts Department of Developmental Services Adult Screening Recommendations 2012. Boston (MA): Massachusetts Department of Developmental Services.

Messinger-Rapport, B.J., Rapport, D.J. (1997). Primary Care for the Developmentally Disabled Adult. Journal of General Internal Medicine, 12(10), 629-636.

Moriston, S.G. (2007). Forgotten Citizens Disparity in Health Care: Inadequate Formal Nursing Preparation on Issues of Routine Cancer Screening for Women with Developmental Disabilities. International Journal of Nursing in Intellectual & Developmental Disabilities, 4 (1).

Mouridsen, S.E., Brønnum-Hansen, H., Rich, B., Isager, T. (2008). Mortality and causes of death in autism spectrum disorders: an update.

Parish, S. L., & Saville, A. W. (2006). Women with cognitive limitations living in the community: Evidence of disability-based disparities in health care. Mental Retardation, 44, 249-259.

Parish, S. L., Moss, K., & Richman, E. L. (2008). Perspectives on health care of adults with developmental disabilities. Intellectual & Developmental Disabilities, 46, 411-426.

Parish, S. L. (2006). Health care of women with disabilities: Population-based evidence of disparities. Health & Social Work, 31, 7-15.

Parish, S.L., Rose, R.A., Swaine, J.G., Luken, K., & O’Hare, L. (2012). Cancer screening knowledge changes: Results from a randomized control trial of women with developmental disabilities. Research on Social Work Practice, 22, 43-53.

Parish, S. L., Swaine, J.G., Luken, K., Rose, R.A., & Dababnah, S. (2012). Cervical and breast cancer screening knowledge of women with developmental disabilities. Intellectual & Developmental Disabilities, 50 (2), 79-91.

Parish, S.L., Swaine, J.G., Son, E., Luken, K. (2013). Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records. Public Health Rep.128(6):519-26.

Parish, S.L., Swaine, J.G., Son, E., & Luken, K. (2013). Receipt of mammography among women with intellectual disabilities: Medical record data indicate substantial disparities for African-American women. Disability & Health Journal, 6, 36-42.

Perkins, E.A., Berkman, K.A. (2011). Aging Adults with Autism Spectrum Disorders (Inclusive Communities: Pathways to Realizing the Vision: AAIDD Annual Conference). https://aaidd.org/docs/default-source/annual-meeting/aaidd_gerontology_division_symposium_aging_with_autism_submittedtoaaidd.pdf?sfvrsn=2

Perkins, E.A., Berkman, K.A. (2012) Into the Unknown: Aging with Autism Spectrum Disorders. American Journal on Intellectual and Developmental Disabilities: 117 (6), 478-496.

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Shavelle, R.M., Strauss, D.J., Pickett, J. (2001). Causes of death in autism. J Autism Dev Disord, 31(6), 569-576.

Shireman, TI, A. Reichard., Backes, JM, & Greiner, KA. (2010). Quality of Diabetes Care for Adults with Developmental Disabilities. Disabil Health J, 3(3), 179-85.

Son, E., Parish, S. L., Swaine, J.G., & Luken, K. (2013). Accuracy of reporting receipt of cervical and breast cancer screening among women with intellectual and developmental disabilities. American Journal of Intellectual and Developmental Disabilities, 118(4):327-36.

Starkstein, S., Gellar, S., Parlier, M., Payne, L., Piven, J. (2015). High rates of parkinsonism in adults with autism. Journal of Neurodevelopmental Disorders, 7, 29.

Swaine, J.G., Dababnah, S., Parish, S.L., & Luken, K. (2013). Family caregivers’ perspectives on barriers and facilitators of cervical and breast cancer screening for women with intellectual disability. Intellectual & Developmental Disabilities, 51(1), 62-73.

Swaine, J.G., Parish, S. L., & Luken, K. (2013). Breast and cervical cancer screening for women with intellectual disabilities. Health & Social Work, 38(3):183-6.

Travers, J., Tincani, M. (2010). Sexuality Education for Individuals with Autism Spectrum Disorders: Critical Issues and Decision Making Guidelines. Education and Training in Autism and Developmental Disabilities, 45(2), 284-293.

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Wilkinson, JE, Culpepper, L., Cerreto, M. (2007).  Screening Tests for Adults with Intellectual Disabilities J. Am. Board Fam. Med., 20(4), 399-407.

Healthy Aging and Wellness Promotion

There are movements in place to improve the well-being of aging adults through better nutrition, exercise, and engagement of cognitively-enhancing activities that have led to increased life expectancies and a general optimism about possibilities for a good life after retirement. Unfortunately, the population of individuals with disabilities appears not to have been naturally included in these pioneering efforts. Healthy aging and aging-in-place programs have become widespread, and now include an emphasis on improving health practices such as regularly scheduled dental care, better nutritional information, and regular physical activity and monitoring.

In the case of autistic adults, these programs need to be modified to recognize the nature of the impairments in mobility and communication and to emphasize reinforcing good practices.

Regular screenings for adult health care (heart disease, cancer, diabetes, oral health issues, vision and hearing changes, psychological concerns, mobility changes, and reviews of behavior management, polypharmacy use, and effective management of comorbid physical and psychiatric health issues) are essential for achieving wellness.

To generate professional engagement and interest in this area, the NLM Family Foundation in July 2012 sponsored a special one-day workshop, “Living with Autism in Adulthood,” at the Heller School for Social Policy and Management at Brandeis University in Waltham, MA. The purpose of the meeting was to discuss progressive public policy and planning initiatives relevant to adults with autism. Topics discussed included employment, residential planning, family and community supports, communication, and the transition to more independent living. Please click on the link below to view a summary of the presentations and discussions which took place at the workshop.

Living with Autism in Adulthood

References

Heller, T., Fisher, D., Marks, B., & Hsieh, K. (2014). Intervention to promote health: Crossing networks of developmental disabilities and aging. Disability and Health,7 (1 Suppl): S24-32.

Heller, T., Hsieh, K., & Rimmer, J.H. (2004) Attitudinal and psychological outcomes of a fitness and health education program on adults with Down syndrome. American Journal on Mental Retardation, 109, 175–185.

Heller, T., McCubbin, J., Drum, C. & Peterson, J. (2011). Physical activity and nutrition health promotion interventions: What’s working for people with intellectual disabilities? Intellectual and Developmental Disabilities 49(1), 26-36.

Marks, B., Sisirak, J., & Chang, Y.C. (2013). Efficacy of a Train-The-Trainer Program to Improve Health Status for Adults with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 26(4), 319-334.

Marks, B., Sisirak, J., & Heller, T. (2010). HealthMatters: Establishing Sustainable Exercise and Nutrition Health Promotion Programs for Adults with Developmental Disabilities. Philadelphia, PA: Brookes Publishing.

Rimmer, J. (2005). Introduction to Achieving A Beneficial Fitness for Persons with Developmental Disabilities. http://www.ncpad.org/104/795/Developmental~Disability~and~Fitness

Salvatori, P., Tremblay, M., Tryssenaar, J. (2003). Living and Aging with a Developmental Disability: Perspectives of Individuals, Family Members, and Service Providers. Journal on Developmental Disabilities, 10(1): 1-19.

Seltzer, M. M., Krauss, M. W., Orsmond, G. I., & Vestal, C. (2000). Families of adolescents and adults with autism: Uncharted territory. In L. M. Glidden (Ed.), International Review of Research on Mental Retardation, Vol. 23. San Diego: Academic Press.

Wright, S.D., Brooks, D.E., D’Astous, V., Grandin, T. (2013). The Challenge and Promise of Autism Spectrum Disorders in Adulthood and Aging: A Systematic Review of the Literature (1990-2013). Autism Insights, 5, 21-73.

End-of-life Planning and Bereavement

Families and caregivers need to prepare and support autistic individuals for the transitions that they may experience in later life, such as the loss of loved ones, family and friends, primary caregivers, and transfer to alternative residential provision.

What happens to autistic adults when faced with the deaths of their parents, siblings, and other important loved ones? After their loved ones have passed on, adults with autism, like anyone else, may need help in addressing their feelings of grief or bewilderment at the loss of a loved one and the uncertainties of the next phase of their lives. Grief may be long delayed or may be expressed behaviorally. Many autistic individuals are excluded from the bereavement process, including normal rituals of mourning, even upon the death of a close relative. This exclusion may be damaging and sets up the excluded individual for confusion, protracted anxiety, and emotional distress as well as escalation of any pre-existing challenging behaviors.

Individuals with intellectual disability when forced by events to make end-of-life decisions often encounter an assumption on the part of others that they lack the capacity to engage with third party persons who are involved. Hospice and palliative care agencies need to become engaged in how to support individuals with autism in the decision-making process. While these are difficult issues, they are just as important in the life of aging autistic adults as they are for neurotypicals. They are practical questions as well as spiritual ones.  Popular end-of-life planning tools such as Five Wishes can often be adapted for use with neurodiverse populations.

Faith communities can sometimes offer comfort and resources in times of bereavement; congregations who already have been welcoming can become an important source of support at times of loss.  Pastors and hospital chaplains may or may not have experience in supporting grieving autistic individuals, but training opportunities are increasingly available for those who wish to develop their skills in this area.  It is critical for anyone supporting grieving autistic adults to be flexible, willing to listen and learn what helps any specific individual, and to be fully present and accepting of whatever forms the grief may take.

References

Center for Developmental Disabilities Evaluation and Research at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Five Wishes video and training materials.  https://shriver.umassmed.edu/cdder/aging_idd_education/five-wishes

Ellison, N, Rosielle, D. (2007). Palliative Care for Adults with Developmental Disabilities. Fast Facts and Concepts.  http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_192.htm

Gaventa, W. (2018). Spirituality, Aging, and End of Life: A Paradox of Loss and Celebration. In W.A. Gaventa, Disability and Spirituality: Recovering Wholeness (Studies in Religion, Theology, and Disability). Waco, Texas: Baylor University Press.

Gaventa, W.C., Coulter, D. (Eds). (2005).  End of Life Care: Bridging Disability and Aging with Person-Centered Care. New York: Haworth Pastoral Press. Kingsbury, L.A. (2008). People Planning Ahead: A Guide to Communicating Healthcare and End-Of-Life Wishes. American Association on Intellectual and Developmental Disabilities.

Kirkendall, A.M., Linton, K., Farris, S. (2017). Intellectual Disabilities and Decision Making at End of Life: A Literature Review. J Appl Res Intellect Disabil., 30(6), 982-994.

Perkins, E.A., Berkman, K.A. (2012) Into the Unknown: Aging with Autism Spectrum Disorders. American Journal on Intellectual and Developmental Disabilities: 117 (6), 478-496.

Senior Years, Ages 65+

In July 2013, the NLM Family Foundation and The Heller School co-sponsored another one-day workshop, “Aging Well with Autism (55 and Older),” at Brandeis University in Waltham, MA. The purpose of the meeting was to discuss several unique challenges faced by the growing population of individuals with autism after age 55. Topics discussed included access to medical and health care services as well as senior life planning initiatives for older autistic adults and their families. Please click on the link below to view a summary of the presentations and discussions which took place at the workshop.

Aging Well with Autism (55 and Older)

References

Friedman ND, Shern, K.J. (2011). Assessment and management of patients with intellectual disabilities by psychiatric consultants. Psychosomatics, 52(3), 210-7.

Friedman, N. (2013). Aging into the Unknown: Autism Spectrum Disorder in Adulthood (Aging Well with Autism (55+)). http://nlmfoundation.org/wp-content/uploads/2013AgingWellwithAutismSummaryFinal_000.pdf

Geurts, H.M., Vissers, M.E. (2012). Elderly with Autism: Executive Functions and Memory. J Autism Dev Disord, 42, 665-675.

Griswold, K.S., Goldstein, M.Z. (1999). Issues Affecting the Lives of Older Persons with Developmental Disabilities. Psychiatric Services, 50(3), 315-317.

Happe, F., Charlton, R.A. (2012). Aging in Autism Spectrum Disorders: A Mini-Review. Gerontology, 58, 70-78.

Hategan, A., Bourgeois, J.A., Goldberg, J. (2016). Aging with autism spectrum disorder: an emerging public health problem. Int Psychogeriatr., 1-3.

Future Directions

The field of aging well with autism is an interdisciplinary field of investigation sharing the sparsely occupied territory between disabilities and gerontology. A challenge facing those who would wish to occupy this territory is to find ways to include and engage the full participation of autistic adults and their families in the gerontology field.

Achieving a meaningful and healthy life in one’s later years is attainable for individuals with autism if care is taken to ensure that they have access to best health and medical care, family planning, and significant social and community support.   Dissemination of best practices will follow from longitudinal population studies specifically addressing the health, educational, social, and recreational needs of older autistic adults.

References 

Harvard Health Publishing (2015). Caregivers Handbook – A Harvard Medical School Special Health Report-A Guide to Caring for the Ill, Elderly, Disabled…and Yourself. Boston, MA: Harvard Health Publishing.

Salvador-Carulla, L., Putnam, M., Bigby, C., & Heller, T. (2012). Advancing a research agenda for bridging aging and disability, International Journal of Integrated Care, 12(16), 1-5.

Schenectady ARC Aging Committee. (2010). Caregiver Information Packet: Aging, Alzheimer’s/Dementia and Developmental Disabilities. http://www.arcschenectady.org/files/Caregiver%20Information%20Packet.pdf

Wright, S. (Ed.s). (2016). Autism spectrum disorder in mid and later life. London, England: Jessica Kingsley Publishers.