Caring for Seniors with Autism
Autism Spectrum Disorder, or ASD, is frequently diagnosed earlier in life but can be diagnosed at any age. Individuals with ASD benefit from specific interventions as they age. Because ASD is not "curable," symptoms or characteristics of ASD persist throughout the lifespan. To preserve and promote quality of life for these individuals, we need to consider the effect that the aging process has on their individual experience. If diagnosed later in life (in adulthood), integrating structure into daily life may be more challenging but necessary. With some tweaks to routine and adjustment of expectations, caregivers can find a balance that works for their loved ones and themselves.
There are proven approaches that you, as a caregiver, can implement to improve these individuals' general well-being and decrease caregiver strain for yourself.
Keeping a daily routine
In general, individuals with ASD thrive in the setting of routine. Repeating structure in daily life can be extremely powerful. A consistent routine helps to define expectations, which helps to increase confidence and feelings of stability. This, in turn, leads to increased feelings of happiness and satisfaction. Feeling uncertain is uncomfortable for anyone; however, with an established routine in place, your loved one knows what to expect, which may ease the stress of the unknown.
A great proactive plan is to create a schedule for the day collaboratively with the individual. Using to-do lists or a daily calendar may be helpful, as well as visualizing the tasks for the day. A daily schedule should include fundamental tasks such as meal times, hygiene/bathing, and bedtime. The daily schedule may also include medication times, activities or classes being taken, physical activity, and some downtime to recharge. Implementing downtime for individuals with ASD is essential to maintaining well-being.
Create a safe environment for everyone
Because everyone's experience with ASD varies, creating an environment unique to each individual's needs is essential. For those with mobility difficulties, creating a space free of obstacles (throw rugs, clutter, trip hazards) will maintain their safety and allow for more independence.
Oftentimes, individuals with ASD have difficulty regulating impulse control. Lack of impulse control may increase the risk of falls due to their desire to "get up and go" without first considering their ability to do so independently.
Installing grab bars to promote safety and decrease fall risk may also be beneficial. Creating a space that feels easy to navigate autonomously will improve confidence.
Sociability is a must
Social engagement is crucial to maintaining cognitive functioning as we age, and those living with ASD are no exception. Social interactions should be integrated into the daily routine. According to Dr. Kenneth Mann (Director of WJCS Outpatient Services for People with Developmental Disabilities), fostering social relationships (particularly in a group setting with other neurodivergent peers) aids in independence and confidence.
If possible, attending a support group with other individuals with ASD is beneficial for both the individual and their caregiver (allowing downtime for the caregiver). Interacting with other individuals who may experience some of the same challenges unique to ASD provides support that cannot be found in other social situations. Introducing new groups/social situations can be overwhelming; start slow. It may take some gentle encouragement, but the benefits of attending a group aimed at creating a supportive community will develop lifelong benefits for your loved one. Family support is essential.
Family support
Supporting an individual with ASD can be challenging for a variety of reasons, yet family support is invaluable. Family support can help develop a positive self-image, ensure appropriate medical follow up occurs, and achieve individual goals. A caring and healthy family environment creates a strong foundation for these individuals. Family can also reinforce a sense of stability.
Acknowledge sensory challenges
The family's continuity and familiarity are essential in creating a realistic routine that can be consistently followed. Be kind to their sensitivities. Autism Spectrum Disorders often alter the sensory system, resulting in heightened or lowered intensity of sensory experiences than the average person. Examples include music and general noises sounding louder to them, lights appearing brighter, and smells seeming stronger. As the caregiver, these sensory alterations may be an opportunity for you to identify "triggers" for your loved one. Once you have determined these "sensory overload" issues, you can work to minimize them. A lower TV and radio volume can be more accommodating while dimming the light or using side lamps can do the trick for avoiding distractions and creating unnecessary stress.
Be mindful of non-spoken language
The ability to communicate is also affected by ASD. Particularly for seniors, it's necessary to be more aware of these challenges and tailor your communication approach accordingly. Direct communication is most effective. Broad questions such as "How are you feeling?" should be avoided and replaced with more specific and direct questions such as "Are you happy/sad today?" "Are you feeling leg cramps or stiff joints?" Specific questions are more likely to get a clear response.
As with all aging people, vision and hearing change as time goes on. Seniors with ASD may have decreased communication abilities as a result, so you may need to monitor them more closely for nonverbal cues. These may include gestures, facial expressions, grimacing, crying, or certain behavior patterns.
Remember
Caring for an individual with ASD throughout the aging process is not without its challenges; however, with the correct strategies, both the affected individual and the caregiver can thrive together. Consistent schedules and support are essential to creating and maintaining a meaningful life.
Resources
Katie Pescatello, RN, MSN, FNP-C Katie Pescatello earned a Master of Science in Nursing from Simmons University, where she also taught pharmacology in the Master's program for several years. She has worked as a nurse practitioner in skilled nursing facilities, outpatient clinics, and hospitals. She is passionate about providing individuals with the tools to make informed decisions. While working as a Hospitalist in several Boston area hospitals, she enjoys writing health content for several online publications, focusing on aging in place and preserving dignity at the end of life. She also acts as a content reviewer for Parentgiving.com.
