By The Autism Peer Posted on

Blog # 24- Home Care and Autism

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         Our society needs to realize that more older adults diagnosed with autism, or those that have had autism throughout their whole lives will need continued short-term and long-term care now and throughout the life-span. The truth of the matter is that older adults with, “severe ASD might be nonverbal and need assistance with all activities of daily living” (Psych Central, 2019). Homemaking and personal care needs for older adults may require extensive assistance, especially where they are not able to completely function on their own. On the contrary, you have older adults with autism that are more than capable of caring for themselves, but there is always the possibility where other medical conditions and/or disabilities may impair at least some if not all of their ADLs (activities of daily living) and IADLs (instrumental activites of daily living). One question I think that comes to mind in the scope of independent living options for older adults with autism is, “Would home care services be a viable option for older adults with autism?”

         Home care involves a set of person-centered services designed to meet the individual needs of older adults and people with chronic illnesses and disabilities so they strive to meet as much of an optimal level of independence within their own homes as long as humanly possible. What is important to note with home care in the context of autism is that many difficulties that older adults with autism endure include, “social isolation, social problems, issues with communication, problems with finances, lack of support with personal care, lack of advocacy, inadequate health care and housing, and lack of job availability” (Psych Central, 2019). In my opinion, while I do think some older adults with autism would greatly benefit from homemakers, home health aides, and personal care attendants due to their ability to maintain independence with a desire to form relationships with people, there will be some older adults with autism who truly struggle to have people they do not know in their own homes. Some adults with autism may not be able to live at home on their own.

         The truth of the matter is that in addition to the, “lack of valid statistical data about an adult with autism” (Ringler, 2019), it has been a struggle finding data and research on the implications that home care has on adults that are both aging and are on the autism spectrum. One thought that comes to my mind that health care and social service networks ought to consider is to first compile and analyze all case management and health care records of older adults with an autism spectrum diagnosis, especially where they are a client or consumer of home care services. While reviewing those specific records, we should check to see the duration of home care services that have been provided to older adults with autism. Were the services short-term? Were the services long-term? Another critical question that we have to state and think about which requires a thorough explanation for each specific aging individual on the autism spectrum is, “What services through home care has the individual been receiving?” The key when analyzing the client and consumer records of older adults with autism will be to get a sense of how much of each service through home care that these individuals benefit from. Some programs associated with home care include the following: Personal care; homemaking; medication management; PERS (personal emergency response systems); protective services; nutrition service or Meals on Wheels; senior companionship; money management; and housing. Gaining statistical data for all these programs under the home care foundation can help us in the fields of health care and social work to identify patterns, projections, sequences, and trajectories associated with these services to understand the beneficence of these services for this specific population of individuals.

         Whether the services are short-term or long term, we should identify any physical closures of cases associated with older adults on the autism spectrum. Did any older adults with autism pass away while receiving home care services? Did any older adults move out of the state? Out of the country? Were any older adults with autism placed in long-term care placement or in a nursing or residential home? Answering these questions can help us to identify their ADLs and IADLs associated with their independence as well as identify the longevity and mortality rates that influence older adults with autism. I do believe we can gather all the information we need if we are able to redact PHI (private health information) with relation to HIPAA regulations as well as the commitment to honoring and respecting privacy and confidentiality.

         What our society also needs to think about is how we can work to improve the transition from adulthood to aging for individuals on the autism spectrum. How, in the context of home care, can we ensure as smooth of a transition as possible for older adults with autism? First, I believe we need to respect and honor the older individual with autism as a person, and not just a disability. We need to utilize a person-centered approach to address the varying needs that these individuals present. For example, if an older individual with autism is feeling isolated, perhaps that the individual might benefit from a senior companion to spend time with someone, and someone who could cook, clean, and shop for the individual. Next, we then need to address the limitations and the strengths associated with the activities of daily living (i.e. walking, talking, eating, dressing) and instrumental activities of daily living (i.e. laundry, washing dishes). Another example might be an older adult with autism might be capable of managing their own money in terms of bills given their strengths in detail and organization, but due to comorbidities (more than one medical condition), the older individual might need an aide to assist an older individual who needs a shower. We also need to accommodate the needs of an aging adult on the autism spectrum. Field staff going out to support older adults might need to be concrete and specific when asking questions and assisting and supporting older individuals with autism. Civic engagement is key for older adults with autism allowing them to utilize their strengths and talents to contribute to society and perhaps the world. Some older adults with autism might be able to teach enrichment courses to other older adults for the sake of knowledge and for leisure, or some might utilize their artistic or musical side to entertain crowds of people. Finally, once we gather more data, knowledge, and statistics about older adults with autism, and older adults with autism in the context of home care, we can then gain a better contextual understanding of how to address the varying needs of these individuals as they transition into aging, especially when providing home care services.

         Concluding this blog, a few last thoughts come to mind. Dr. Tony Attwood believes that older adults with autism mentoring younger adults with autism by sharing their experiences, knowledge, and wisdom, this truly, “is one wonderful way our aging adults can contribute to the world around them” (Ringler, 2019). I do think at some point we could have young adults with autism providing home care services to older adults with autism given the intergenerational relationships they would be able to develop as well as the connection of autism. The last thought which holds not only true in the context of home care, but also in life, is that given that there is a rise of older adults diagnosed on the autism spectrum in the United States, the truth of the matter is that we must, “reach out to the caregivers, medical staff, and support service providers by initiating a campaign to educate, train, and prepare them so they are most comfortable and able to deal with the challenges that lie ahead as our autistic children become adults and then transition to senior citizens” (Ringler, 2019). What this means is that we need to train home care field staff about autism and how to work with older adults on the autism spectrum when providing them the services they will need. Remember, the goal is to help them obtain as much of an optimal level of independence within their own homes as possible.