“Data and Statistics on Autism Spectrum Disorder” Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/autism/data.html. Published on Nov. 15, 2018.
Mather, Mark. “Fact Sheet: Aging In the United States” Population Reference Bureau. https://www.prb.org/aging-unitedstates-fact-sheet/. Published on Jan. 13, 2016.
Singer, Janet. “Autism in Older Adults”. Psych Central. https://psychcentral.com/blog/autism-in-older-adults/. Published on Jan. 13, 2019.
As someone who has received their certification in aging services (also known as Gerontology, or the study of aging), I thought for this blog I would give some insight into some gerontological principles, and connect them to autism and how this will effect older adults going forward.
What is interesting to note is that, “The number of Americans ages 65 and older is projected to more than double from 46 million today to over 98 million by 2060” (Population Reference Bureau). In addition, “1 in 59 children have been identified with autism spectrum disorder”(Centers for Disease Control and Prevention). My prediction, given the rate of the aging population and the number of children diagnosed with autism, is that there will be a rise in the number of older adults living with autism in the years to come.
My concern, however, is that, “There is a shortage of research on older adults with ASD and a lack of viable plans for short term and long term care” (Singer). Autism research has mainly been focused on childhood and adolescence for years, but now individuals and families are realizing that there are not a lot of resources, supports, and services for adults with autism. However, there are states in the U.S. that are striving to include adults with autism in various capacities in society such as postsecondary education (college and graduate school), and employment where employers are starting to see the skills and talents that adults with autism can bring to their organizations. How do we address the lack of research though with regards to older adults with ASD without compromising their privacy and confidentiality rights?
First, I would look at some of the most important life categories that are involved in a person’s life and ask these kinds of questions when doctors, scientists, and researchers are looking for data and facts that objectively support the findings of understanding the principles of older adulthood in people with autism. Family history: Did the older adult with autism have a supportive family? Were there issues in their family? Were the parents married or divorced? How did the older adult with autism get along with siblings and other relatives? This can give insight into where an older adult with autism is at in terms of independence (i.e. guardianship? personal care attendant needed?) What morals and values did the older adult with autism develop? Social history: Any hobbies and interests? Any volunteer and/or community service? Any friendships or relationships (i.e. dating, marriage)? Here is some insight that can be gained in depth about social inclusion and integration of older adults with autism, and to evaluate their social and emotional well-being, especially where in cases where there are concerns of isolation which can lead to feelings of anxiety and depression. Criminal and legal history: Any older adults with autism charged for any crimes (felonies or misdemeanors)? Probation? Fines? Jail time? Educational history: How much education have they received? High school? Associates degree? Bachelor’s degree? Master’s degree? Ph.D degree? What was their majors and minors (if college and beyond)? This can also give a glimpse into independent living status; employment status; socioeconomic status; and other pertinent categories. Living arrangements: Living with parents? Living alone? Living with someone else? In an apartment? In a condominium? In a private home? Section 8 housing? Medical history: Where they diagnosed with any acute or chronic medical conditions in the past? Any current medical issues? Any new medical issues diagnosed? Medications- Any current or new medications older adults with autism are taking? Psychological history: Anxiety? depression? Homicidal or suicidal tendencies? I think that these are some of many questions that could be researched on older adults diagnosed with autism. The main idea behind all these questions is that when conducting research on older adults with autism, each adult is individualized so a person-centered biopsychosocial approach has to be used to analyze the facts and the opinions, as well as use credible sources, to gain insight into beginning to recognize the foundations of autism in older adulthood. Also, going back to living arrangements, a lot of aging service access points (ASAPs) and Elder Affair organizations strive to keep more older adults within their own homes (the concept of “Aging in Place”) vs. being put in a nursing home or a residential setting.
Second, in order to abide by HIPAA (Health Information Portability and Accountability Act) as well as privacy and confidentiality standards and regulations, one possibility would be with the permission of medical and social service agencies to redact personal information from files that are identifiable (i.e. Last names; # of address; social security number; ethnicity), but keep list of medical conditions (especially if autism is a diagnosis) as long as it designed for the purpose of research and education use. However, it would be wise to implement the principles of authorization and consent (permission to use the information if possible).
Third, in terms of the variables used in studies, some variables that may be of interest when trying to gain more data and information about older adults with autism may include the following: Race; ethnicity; gender; age; living arrangements; income (i.e. Social security and Medicare); Pensions and benefits; medical conditions and disabilities (including autism); etc. For example, suppose I wanted to do a cross-sectional study on older adults with autism and employment. I would need an equal number of older adults with autism who work full time; part time; and no work; and I would also want to get a specific # of people working into their 60s, 70s, 80s, 90s, etc. if that is possible and apply them to each of these categories. You also have to factor in the gender such as having an even number of males and females when correlating a cross-sectional study for the purposes of collecting a sufficient amount of data and information, and, to promote valid and reliable results in order to make objective and supportive conclusions and theories about older adults with autism and employment. It would be interesting to assess the status of independent living in terms of activities and instrumental activities of daily living (ADLS and IADLS), as well as how this reflects their social and family histories. Another example could be a longitudinal study of evaluating older adults in living arrangements. I would definite the time frame, so let’s say 10 years as an example. Now over 10 years, I would want to see older adults with autism who are living alone; living with a spouse; living with family; in guardianship; in a residential setting; in a nursing home; in an apartment; in a private home; etc. Again, get a specific # of people (including gender equality) for a # of age groups. Again, this would give insight to see if there are factors such as fall hazards; medical status changes; changes in income; and other pertinent factors that would reflect this type of a study. These are just a couple of many kinds of studies that could be utilized in gathering more data and information about autism in older adulthood.
Finally, I have heard that it does cost money to fund for research projects. However, I believe there are ways that autism and aging research can be conducted without having to spend a lot of money (ideally, little to no money). Gather case studies; gather reading material; recordings; lectures; medical and psychological records of older adults (especially if there is an autism diagnosis); observations; statistics; data. I believe we have to start thinking innovative notions in addressing the processes of aging in adults with autism. I may have not covered everything about aging and its impact on adults living with autism, but these are just some of many situations that are likely to occur in the future. This is also why I think at the state and the federal levels, aging service access points (ASAPS) and Elder Affairs organizations among all the states should be forming a bridge with the autism resource centers to help people with autism transform from childhood and adolescence all the way to the end of a person’s life. I am someone that would greatly advocate for this kind of a collaboration, but expansions in education and research have to be incorporated to address these topics.