Autism After 65:
Making the Most of the Golden Years
For the most part, this article is not based on research. I am using personal life experiences and the reports of individuals with whom I have corresponded and/or personally known for many years through research for my previous book, The Partner’s Guide to Asperger Syndrome. Many of the subjects covered here apply to all seniors. However, the extent and consequences are amplified when ASD is involved.
Aging is what we all hope for, but are still surprised when the associated challenges occur. There is no existing “list” of challenges for the aging process in individuals on the autism spectrum. The impact of aging, however, can be much more traumatic and/or challenging for the individual with ASD due to less flexibility (physically and mentally), more sensory issues, and decreasing social skills.
Many myths exist concerning those who become senior citizens or what many define as “old age.” For the purpose of this article, I will consider senior citizen status as starting at 65. Just a few myths regarding the aging process are:
• Older people are less mentally stable.
• All older people become childish in their behavior and thoughts.
• All older people just want to sit back and watch the world go by.
Due to advances in medical care, people are living longer than ever in recorded history. Along with this, our focus on quality of life as a senior is ever increasing. Now that we recognize the vast number of individuals with ASD, we include them in our concerns about quality of life in old age.
Here are some things that those of us who love and/or care for a senior who has ASD need to do:
• Appreciate the gifts and skills of the older person with ASD. Many have a lifetime of experiences, talents, and expertise that can be shared with others. When they are asked to do this and enjoy the process, their feelings of being needed and important increase.
• Prepare for their eventual loss of skills. It is important for those who are aging and have ASD to understand that it is perfectly natural to begin losing some acuity in sight, hearing, balance, and flexibility. Finding a caring gerontologist to be part of their care team can enhance this understanding. If they are in situations in which they can converse with others in their age group, it helps them to understand that they are not alone in these experiences.
• Preparing for eventual loss of health is not always possible. None of us can see what may be in store for us in terms of health challenges. Although some genetic testing is leading to more information on future health risks, it may be better to just focus on living a healthy lifestyle and keeping a positive attitude. Maintaining a balanced diet, regular exercise, attending to any medical needs, and seeking counseling and group support when necessary are ways to achieve this.
As the person with ASD loses their flexibility, we must strive to increase our flexibility in our interactions and plans concerning them. Here are some things we caretakers must learn:
• Allow more time for the person’s speech processing, both expressive (speaking) and receptive (hearing and interpreting).
• Keep in mind that their misbehavior is seldom intentional. The playing field of life is changing for them. Assume the best unless you are certain that a behavior or mannerism is intentionally negative.
• We must change our resources for helping them cope. Have suggestions for solutions ready before addressing problems with the person who has an ASD. Be sure to stay upbeat in your discussions and dealings with the senior you are helping.
Individuals with an ASD often experience old age differently than non-spectrum seniors. Despite gradual transitions, their realization of body changes may be very sudden. Although they are at an older age, they may still be “stuck” in the interests and behaviors of a younger era in their lives, such as liking and even obsessing on music, movies, games, dress of past decades (e.g., disco music or hippie clothing).
It is common for seniors with ASD to have difficulty explaining states of health. For instance, they may not tell you they are experiencing stiff joints, leg cramps, or heart arrhythmia. Or they may not realize they are losing their hearing, until one day they panic about it. This can also be true of diminishing sight. These phenomena can lead to disagreements or fear. Suddenly, they are making proclamations or accusations, such as:
• “The TV isn’t loud enough.”
• “You aren’t using 100 watt bulbs in the lamps.”
• “Stop taking me to doctors I don’t need to see.”
• “I don’t walk slowly, the rest of you walk too fast.”
Proactive plans are crucial at this turn of events. Remind the senior with ASD of the good points of their appearance. This can be a good way to encourage grooming and hygiene (e.g., “My body can change, but I can still dress well”). Encourage regular exercise to help them stay as fit as possible. This is where programs for typical seniors may work just fine, such as YMCA water fitness, Tai chi programs, yoga, and community center exercise events. Contact your state office of aging for more information. This can also be a time of opportunity for the caregivers to take a small break at predictable intervals.
Another great proactive plan is to make a morning schedule or “to do list” for the ASD senior. Always remember the “not about me, without me” philosophy when attempting such a schedule or list. No one wants to be forced to do things that they don’t like. Therefore, your positive and creative skills will be essential in working with them to develop a daily list and then add in items for appointments or special events. A good place to begin is with breakfast. Choose something they like to do or eat in the morning and make that a part of the checklist. Depending on their living situation, other items may have to take place before breakfast, such as grooming, medications, and checking the checklist. For example, if you live in a communal setting, you may not be able to go to breakfast in your pajamas. In grooming, it may help to select an outfit the late afternoon before their next morning routine. This is a great awareness check time:
• What is the weather forecast?
• Am I doing something in the morning that will require activity-specific clothing?
• Is what I want to wear clean (beware of spots, as they often don’t see them) and pressed? (Using a laundry service can be very helpful if the ASD senior can afford this expense. If not, friends and family may volunteer to help.)
• Will I be comfortable in what I’m choosing to wear?
Taking medications is very time-specific, as some should be taken before eating, some during meals, and some afterwards. Seniors can use segmented pill dispensers that not only delineate the day of the week, but the time of day, such as a.m. and p.m. For our seniors, using different colored pill dispensers before, during and after eating may be helpful. In some cases, it may be necessary to have a separate pill container cluster that is given out each day. Vera Bradley makes a pill container set that can be kept inside a small, zipped bag. Using colored tape or indelible markers can indicate which meal and whether before, during, or after eating that meal. For those who will accept the accommodation, there are now pill dispenser wristbands that can be used as well.
Diminished hearing and sight, increasing aches and pains, and feeling more isolated can lead to a grumpy disposition. This can be seen in critical comments about those with whom they interact, being very picky about food and entertainment, and negative facial expressions. Some seniors on the autism spectrum can become very paranoid, suddenly distrusting those who help and/or are friends with them. Informing others of their health challenges and using distraction techniques may help with this.
Prepare a “training list” to share with auxiliary helpers. Likes and dislikes, daily routines, and health issues are important to include on this list. Entertainment preferences and areas of interest should be followed by cautions about what they don’t like in these areas. For routines, include exercise, diet, and social routines. Be sure to be specific as to what they like and dislike in each area. Health issues to be covered can be a list of medications and allergies, methods of persuading them to take their meds that have been successful, and an emergency medical call list. If the senior with ASD has repetitive verbal arguments, phrases, or other repetitive verbal behaviors, list ways to respond to these situations. Most important on your training list is explaining ways to calm and soothe this individual.
The most dramatic change that aging brings about is a greater need to access medical care. This involves everything from routine tests to management of chronic medical needs to sudden trips to emergency care caused by falls or deterioration of body functions. Being proactive with the ASD senior’s health care providers will be immensely helpful. The senior with autism may still have problems with waiting their turn for service and accurately explaining their aches, pains, and concerns. Informing those personnel working in intake positions at places that will be regularly visited about their possible stressors may help. Also, ask for an estimate of how long the wait will be. This will help you to advise the senior in question about how to cope with the wait.
Visual supports can help with explaining areas and levels of pain, if necessary. When accessing emergency care, keep a sheet of information about the senior in a handy location, such as the refrigerator door, your wallet, or by the telephone. This can include keys to communicating with that person, and understanding the difference in their expressive language. Understanding the impact of other phenomena such as claustrophobia or hospital psychosis, or “sundowners” syndrome will be important.
Hospital Psychosis occurs when someone enters a structured living situation such as hospitalization or a skilled care facility. They suddenly may become disoriented and paranoid, often blaming their primary caretaker or care staff for their confinement, and distrusting the people upon whom they rely for care. They may engage in nonsensical arguments when asked to take medicine or agree to tests. Escape often becomes their top priority. If the senior with ASD is showing signs of this behavior, be sure that his or her caregiver team consults psychiatric care in case antipsychotic drugs may be needed. Often elopement safeguards may need to be put in place. In some elders, this confusion may become a daily occurrence, regardless of a new setting or one that is familiar. This may occur most often in the late afternoon or early evening.
Don’t offer props or strategies when they are not needed. Over-anticipating their challenges can further their reliance on others.
Remaining a healthy caregiver is key in making the aging experience optimal. Whether a paid or volunteer non-family member or someone who is related by genetics or love, you will need knowledge and encouragement as you take this important journey into the new frontier of aging.
Work at establishing regular intervals to take breaks from being the main caregiver as much as you need, and/or as much as is possible. Find friends and/or a counselor with whom to share concerns and frustrations. Talk to others in similar situations. Sometimes a social worker may be available to link you to others facing similar challenges. If not, consider forming a support group locally or online. Stay aware of what makes you a mentally and physically healthy caregiver. Stay physically as strong as possible by regular exercise, yoga, or other forms of meditation, or just taking a daily walk.
Finding effective “relief valves” will be important, whether that is physical, spiritual, or intellectual. Knitting, reading, drawing or other art endeavors, computer activities such as Caring Bridge (for those facing potentially terminal illness) or Facebook can help. If you are the spouse or partner of the aging person with ASD, this stage of life can be highly stressful. A strong faith can be helpful in this or any time of great stress and worry. Most religious denominations have group activities that often involve spouses with aging or ill partners.
I encourage you to stay in touch with others who are involved on a daily basis with ASD and aging, whether caregivers or clinicians. Though each path will be unique, many circumstances will be similar. Keep collaboration your key to success.
Sources of Information on Aging and Elder Care
Indiana Long Term Care Insurance Program: http://www.in.gov/iltcp/
National Institute on Aging: https://www.nia.nih.gov/search/site/aging
National Council on Aging: www.ncoa.org
American Society on Aging: www.asaging.org
Administration on Aging: www.aoa.gov