Help Autistic Seniors Thrive in Senior Communities!
About 4 months ago, my youngest daughter called to ask me with some help regarding her behavior as a small child. She was being tested by a professional to determine whether she was autistic. She is currently 34 years old. We discussed the questions, and the professional gave a clear diagnosis that my daughter is a high-masking autistic person.
The traditional diagnostic criteria for autism focused on the behaviors of very young, mostly male children. What is being discovered by the autistic community is that autistic females display a different set of behaviors. This is because young females seem to be better at observing and copying the expected cultural behaviors and responses than young males. This may stem from societal pressures—small girls often face stronger reactions if they don’t conform to expected behaviors, whereas boys historically have been given more leeway to act freely.
My parents had passed away a few years before my daughter’s diagnosis, but I had discussed the possibility of my father being autistic with his sister. She agreed that, based on current knowledge, my father was likely somewhere on the autism spectrum. Born in 1927, he lived in a time when autism diagnoses were almost nonexistent, especially in Southern California. I also believe my mother was a high-masking autistic female, a trait that no one would have recognized in the 1930s.
Following my daughter’s diagnosis and my suspicions about both my parents, I decided to research further, including taking several autism diagnostic surveys. As it turns out, I seem to also be a high-masking autistic person.
Because my husband and I work with senior citizens, I began investigating the resources and accommodations available to autistic seniors. While there is some material, there is a notable lack of initiatives specifically tailored to autistic seniors. Some Elder Law Attorneys and professional Fiduciaries in California work on Special Needs Trusts, but I haven’t found a laser-focused program on the needs of autistic seniors.
This led me to ponder: What can be done to help autistic seniors face the significant changes of moving into a community?
If you are responsible for helping an autistic senior transition to a senior living community, here are some suggestions to make the process smoother:
Before the Move:
- Understand Their Specific Needs: Autism is a spectrum, and everyone’s challenges and reactions to discomfort vary. The most common stressors include:
- Sensory Issues: for some this may be related to the brightness or lack of light, Smells, Textures, tastes, Sounds, new foods, or simply too much of all of these at once.
- Change in Routine: This could be time routines, food routines, getting to sleep routines, where the person sits in the room changes and many more.
- Social Struggles: Moving from being mostly alone in one’s home to moving into a building with many people can cause extreme stress.
- Communication Issues: Does the senior feel safe and heard when speaking up about their needs, are the people in conversation speaking too loudly, too softly, too fast, using a lot of excess words? Do the people genuinely accept newcomers?
- Repetitive and Routine Behaviors: Scheduling Changes, People looking at them while stimming (movements used to calm oneself), Selecting new seating, new habits, new routines
- Visit Communities in Advance:
- Take the senior to visit several communities if they are willing to do so. They will probably request that you or a trusted friend go with them on the visits.
- This friend or relative will need to be aware of the list above. Suggest they take notes as to how the senior reacts when they enter the community and the various rooms. The senior may notice sounds or smells that you cannot detect. Make a note of how they describe the things that you may not even notice.
- If the senior needs a break in the middle of a tour, the library of the community is usually empty, calm, and quiet. They are a great space to sit a minute, calm down, and make notes.
- Find out about the specific activities and locations of the activities in that community. Take the senior to sit in or at least look at those rooms as well as the basic tour.
- After each tour, in a safe setting, ask the senior what he liked and disliked about the community. Ask him if he found any things that might be dealbreakers. This could be as simple as a squeaky elevator, a bad smell, bright lights that hurt their eyes. Make a note of it.
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- If a meltdown occurs:
- During the tour, or during the process of contemplating the move, the senior may get into a meltdown. Some meltdowns are loud and messy, others are silent, with the person withdrawing into themselves. The quiet ones are more dangerous to the person physically, as they try to hold explosive amounts of stress inside.
- One of the best ways I have heard to calm an autistic meltdown is to think of how you would calm a kitten. Using gentle words, moving slowly, gently offering support, gently touching if needed and permitted. Logic will not help. The person’s emotions have completely overtaken the person’s system.
- Selecting a Unit:
After a community is selected, a unit will need to be selected.
- If the senior needs absolute quiet to be able to sleep, see if you can find a unit away from the elevator, laundry room, or community entrance. If all the built-in lights are glaring, ask permission to bring softer light bulbs for those built ins.
- Remember to check for smells, boisterous neighbors, and try to select based on the comfort level of the senior, not the price. Yes, the price is important, but it is not the most important thing.
- Ask about finding the most comfortable places and times to eat in the restaurants or dining areas. Some communities have meal sitting times, and there may be one sitting that is louder, or is less well attended that may suit the needs of your senior better than other choices. Some have assigned seating, but do not tell the visitors that up front, so you may have to ask about their seating arrangements. If they assign seating, request a table with quieter folks.
- Find out about the specific activities and locations of the activities in that community. Most of these activities first come, first served, so they can become boisterous. Perhaps the team at the community could suggest a few calming activities to start off with.
- Prepping For the Move:
Create a Go Bag for the day of the move and the first night at the new location. Be sure to include:
- Essentials: Prescriptions, hearing aids, glasses, CPAP machines, dentures, toiletries, and grooming supplies.
- Sensory items: ear plugs, comforting essential oils, super comfy pajamas, robe, slippers, a weighted blanket and/or their favorite texture of blanket.
- Comfort items: whatever they need for comfort, which could be fidget items, special music, certain hand lotion, a favorite beverage or treat, photos of loved ones.
- OTC Medications for commonly experienced issues such as stomach distress, lung issues, rashes, etc.
- Sleeping Routine items: This will vary drastically by the individual. Ask them what their nightly getting to sleep routine is. What do they need to have easily available to make sure they are not required to change their routine (which can directly impact on quality of sleep). Whatever it is, make sure it is in the bag.
- Morning Routines: These can vary wildly, but make sure the senior knows where the items he needs for these are located. It could be a favorite tea, or jelly, or a wake-up song.
Post-Move Support:
- Schedule follow-up visits to provide additional support. Autistic individuals often fear and despise change, so your presence can be reassuring.
- Assist with communicating their needs to the staff, if necessary, as clear communication can significantly impact their comfort.
Thank you for helping your senior make this transition as stress-free as possible.