Supporting Elder Aspies
Our elderly need us, not tomorrow, but today.
Posted Aug 19, 2011
The number of elderly Aspies seeking an Asperger syndrome diagnosis is minimal. Yet I can safely assume every one of us can identify someone in our lives beyond retirement age who fits the Aspie profile. As we impatiently wait for the community to spread its protective wings over Aspies of all ages, we individuals need to act now to deliver solace to our exceptional elders. I was lucky to have been raised by an Aspie father and as he grew older, I experienced his AS related challenges and needs, up close and personal. I noticed that as he got older, he became more effected by AS, and not always in a happy way. It pained me to see my dad struggle with things he used to be able to manage. His mind didn't dim, but his AS shinned. He started talking more and more about train schedules. He got more nervous when his routine was interfered with. And he became more adverse to human contact beyond our tiny immediate family. If I had sought their advice, aging experts might have told me this is the way many elderly go, but I saw a discreet difference between my father and other people his age. My father wasn't becoming a typical older person who needed care and comfort. He was returning to his comfort zone; his Aspie roots.
In a loving desire to help him figure things out, I first turned to academic research on aging and AS. Sadly, there isn't much to find. I talked to Dad about this and together we carried on a gentle dialogue about what it's like to get older when you have a neurobiological difference. None of the suggestions below have been scientifically measured, but they are my best bet on how to help Aspie elders. I hope everyone who reads them, takes them and spins them off into dozens and dozens of other supports.
It is essential police, firefighters, emergency technicians, hospital staff, doctors, all caregivers and a neighbor or two know about AS and how it effects your elderly Aspie. When you provide information that can help others understand the unique nature of the Aspie, they can then try to adapt their communications styles to better match the Aspie's. The information provided should range from the very basics such as what kinds of touch the Aspie will willingly accept to the big stuff such as an explanation of the literal mindedness of the Aspie and a disclosure about how difficult it is for the Aspie to show emotions or respond in empathetic ways to others. The main idea is to make sure you help form a community in which the Aspie remains safe, calm and happy while avoiding undue criticism, mixed messages, or unfriendly approaches.
Make it a point to check in on your Aspie's caregivers or neighbors every now and then. Just as you may have had to bribe a bully to be kind to an Aspie child, do what you can to encourage people around your Aspie elder to be nice. I brought treats and holiday gifts to two of my father's neighbors and made sure my family was always smiling and friendly when we ran into one another. I asked the neighbors to please keep an eye on my father for me, and in exchange I shared not only the gifts and heartfelt thanks, but also information and assistance I had to help them with whatever need they had. In no time at all, the neighbors were clearing my father's sidewalk from snow and calling me when they hadn't seen him outside after a few days.
When Dad had to make a doctor or hospital visit, I called the caregivers in advance to explain my father's way of thinking and his unique challenges. If an emergency came up, such as a car accident, I handed the emergency responders a note explaining my father's AS. I did all I could to keep my father from knowing I was explaining him to others because it was always my goal to protect his ego and pride while making sure he would be understood and respected by others. When he spent a long period of time in the hospital, my mother and I made certain every person who came into contact with him clearly understood they were not to take it personally when my father refused to talk to them or swatted them away when they had to take his vital signs. And we made sure one of us was always with him just in case he was mistaken for a crabby old man who didn't deserve TLC. We were his interpreters and his protectors, but also his public relations directors.
I really noticed a need for certain creature comforts when Dad grew older. He began to wear a handkerchief on his hairless head to keep drafts away. He started wearing his winter down vest even in the summer and he switched from leather dress shoes to more forgiving tennis shoes. He needed a certain pillow and certain temperatures, certain music and certain television programs to be comfortable. This only became a problem when he was in the hospital and what a big problem it was. Suffice to say we made sure Dad had his own hospital room and as many allowances from the hospital staff as possible that worked to make his room as similar to his home's environment as possible. We even convinced them to let him wear his little handkerchief on his head. Giving in on these little things made life for the hospital staff and Dad, much more pleasant. Unless your Aspie is asking for environmental arrangements that might cause harm, I suggest you help him or her create the most personalized and comfortable environment possible, wherever they are.
Elderly people in general loose part of their ability to provide their own self-care. I think our community's elderly return to their pre-pubescent mindset when it comes to hygiene, attire and personal style. Do what you can to gently remind your elder Aspie to take regular showers or at least wear deodorant and a clean smelling lotion or powder. Wash their clothes for them if you can, or hand them stain removers if they refuse to let their clothing be washed. Walk on eggshells when you need to, but remind your Aspie that your suggestions on their personal care are to help them from being ostracized in a society that may well pay too much attention to such things. I got my father to take better care of his person by reminding him how often he used to recite one of his favorite Latin phrases to me when I was young and sloppy. He used to say, "Vestis virum redidt" or "The clothes make the man" to remind me we are judged by our appearance. I would tell him if his words were good enough for me, they ought to be good enough for him. And it worked!
Sticking to a rigid schedule can be very good for the elderly. It reminds them to take their medicine on time, when to eat, when to expect visitors, when it is the best time to drive or run errands and any number of other living essentials. But when you have a rigid minded Aspie becoming a routine bound elderly adult, you may find too many things are set in a stone you can't move with a forklift. It is essential to help your Aspie stay as flexible as possible because changes in routine are inevitable, especially during the time in life when accidents and emergencies are bound to creep in.
I tried to keep my father as flexible as possible by warning him ahead of time that a change we can't avoid may come up. For example, a few days before his doctor's appointment I would start telling him the doctor may be called away on another emergency, or that his office might be running behind schedule, so Dad wouldn't get too stuck on a time and place with the doc. I would also make a few surprise visits a week, to keep him from expecting me at a certain time every day and to remind him it wasn't such a bad thing to have someone he enjoyed stop by to say hi. My daughters kept him on his toes by taking him to their favorite restaurants for dinner every once in awhile, though he much preferred going to the restaurant he liked best. We would also do little things like bring him snacks he had never heard of, or books beyond his typical interest, or new photos to keep around his house. He might complain about the newness of things, but by inserting something new and different into his routine, we kept him from becoming too rigid in his expectations and life style. If, however, something we did or attempted to do did upset him too much, we immediately pulled back our efforts until another day. There is a delicate balance between keeping someone flexible and driving them to great anxiety. Try to find that balance.
There was absolutely no chance in the world I could have gotten my father to any kind of therapist for any kind of intervention, but I was able to go to a therapist myself and ask for ideas on how to assist my dad without his knowing I was counseling him. With the therapist's help I learned how to use a tiny bit of cognitive behaviorism with Dad. Dad used to use this method with me when I was a child, so I'm sure there was a part of him that understood his only child was reversing roles with him, but he would allow me to help him use his logic and intellect to see his way through issues that were maddening to him. And then he would let me help him formulate a plan to see his way through the situation. He kept a journal as long as I knew him, so it was easy to get him to keep track of his progress with sticky situations. If he wasn't a journal keeper, I think I would have tried to get him to at least take notes on how he was doing, or as a last resort, I would let him dictate how he was doing so I could journal for him. My goal was to help him express what he needed, formulate a plan to deal with the needs, and then see to it he kept working on his behavior or thoughts until the plan was able to run as smoothly as possible.
This was never a big deal to my dad, but I knew it would be best for him to keep practicing his social skills, for fear he would regress too much if he didn't. While I do not think he was ever lonely- that concept eluded him- I do know he got some enjoyment from sharing time with fellow engineers who worked along side him. We taught him how to use the computer to stay in touch with his engineering buddies online and he took himself to a monthly luncheon club they all formed. Talking with old colleagues kept his mind happy and his social skills sharper. We also brought him with us to what few social functions we hosted at our house. I made sure the people coming over knew about my dad's tendency to talk about trains and his tendency to monologue, but I also pointed out he was a bright guy with loads of history to share and without fail at least two of our guests would seek him out to ask about the old days. Dad would surely start in on trains, but when the guests asked about some other topic he would switch gears for a while and follow the conversation in another way. This told me he was relaxed and happy to be there. When I heard him continue on about trains too often despite the attempts of friends to get him off that subject, I knew he was getting anxious and it was time for him to go home. He always commented on what a good time he had and my guests never failed to mention how much they had learned from Dad's lectures.
Our elderly need us, not tomorrow, but today. Here's hoping we will all do more and more to be there for them!