warehousing older adults with autism in the name of “elder care”
I have been reading articles on “care of geriatric individuals who are autistic” .
I am filled with dread!
I have seen only a few studies and articles which seem to “get it” regarding how individual needs of autistic folks can be. One may need extra bright light, one may crave shadows for comfort to keep from being over stimulated. One may need background music of certain sorts and others may prefer silence. The list is endless, our triggers and processing distresses and overwhelms are many and varied.
Most of us are disturbed by sudden noises or lots of talk/sound from various sources happening at one time. Many of us crave solitude and find it healing and peaceful, rather than lonely. Many of us hate sudden touch or have other sensory struggles. All of us have difficulty interacting with other humans or we would not have got our autistic diagnosis.
My autistic mother (never diagnosed in her life time but obvious to me after I got my own diagnosis) was in a series of nursing homes/ sheltered care/ dementia units as her Parkinson’s and her dementia became too much to manage in a private setting. I have years of experience observing management of care homes through out the 8 years I had responsibility for my mother’s care. I don’t like what I saw then , and what I have been reading is beyond distressing.
The majority of the articles I am finding were written as part of out-reach for gerontology groups and care homes, independent service providers with geriatric specialties, and other professionals trying to convince you that they know best how to take care of your ageing loved one when you can no longer do that. PR and marketing tools! In most of these there is very little actual understanding of autism shown! ( are we surprised??? nooooo)
Nursing homes of today are built to care for large numbers of people simultaneously.
They are perpetually and distressingly under staffed by low paid individuals who are asked to work long and stressful hours with little relief, and who are not equipped/ trained/ emotionally able to deal with constant demands that so many hugely varied clients’ needs call for.
People are gathered several times a day in the large rooms utilized for feeding, “social activities” and other purposes. These areas usually have one or more wide screen TVs tuned to the favorite channel of the care worker/s in charge and turned very loud so it can be heard over the constant noise of so many people interacting or calling in distress . Piped in music can be different in different areas of the place, sometimes PA systems are also used, sounds from one area layer upon each other. Some patients cry, scream, call for help continually day and night, walk and wander perpetually and intrude in private rooms, ransack each others possessions, some sleep in each other’s beds, touch, accost, hug, kiss, or slap/shake or otherwise invade personal space and property.
People are usually placed in these holding pens ( the big utility rooms) as they are for feeding, their companions are not always of their choice, often people must crowd past others, be moved or removed and replaced for others to pass in specialized wheel chairs or using walkers, etc. People touch, push, talk, scream, wail, with piped in background music and the TV tuned in and blaring over it all.
Articles emphasize how important it is to have social contact as an older autistic person. Articles talk about keeping old autistic adults “socializing “by making ( they never use that word though!) them attend exercise classes, support groups, or other planned activities. ( All for their own good) Sometimes groups are loaded on a bus to participate in some off campus activity, even just to “go for a drive” . Many are not given choice to participate in these “activities” .
Aids and care workers whisk patients off to be bathed, changed, have physical therapy or other individual needs met. I have seen care takers repeatedly just come up behind individuals in wheelchairs, grab the handles and start moving. No greetings, no explanations, no warning or time for the person in the chair to orient themselves or consent/acknowledge. No time, too much to do, gotta hurry , here we go! No wonder my mother began to bite people!!!
I can think of no greater sensory hell. I can think of no greater emotional hell, I can think of no more stressful way to spend my last years on earth.
I had to take tranquilizers to force myself to visit my mother. She had to be put on tranquilizers to keep her calm and manageable. No wonder care workers are so hard to find!
People wanting to eat their meals in their rooms or to spend quiet time alone were not allowed to do so. Leaving individuals in their rooms was unsafe due to needs to monitor against falls and other accidents, and difficult for aides who cleaned, changed the linens, etc. to work around.
Feeding/ eating in the rooms was messy and much more work for the staff.
In any of these care situations please realize and recognize that the first priority is managing a huge number of helpless individuals , feeding them and cleaning up after them, keeping them clothed and bodily at least minimally clean. Realize the minimum in most cases is hard to achieve under current circumstances and realities.
Recognize that many autistic individuals have very difficult behaviors/preferences/ thought processes and that only the most basic physical care will be seen to in the very best of circumstances.
The saddest part of all is that we often have no other options or choices available to us. We are not able to care for ourselves or those we love and cope safely at home, and these are the alternatives we face and must choose from. Only the very wealthy have other options.
My father often said “getting old is hell but it beats the alternative”. Today I might argue with that. By 2030 adults born in the baby boom generation will all be over the age of 65. There is now and will be even more need for elder care of all sorts than ever before, and demands placed on an ageing society will be many.
Will society be be able to meet the demand for more than even the most minimal care and basic needs? I see no signs of change, perhaps even already a lack of medical care and service persons to fill the caretakers slots.
This is not a cheerful or up-beat , optimistic post, but a realistic look at our futures.
Plan now for future needs, take care of yourself to the very best of your ability. Do that now!!!
Have long and detailed discussions with loved ones about your needs and desires if at all possible, Think about possibilities and plan for them now.
Don’t assume the worst may not happen, instead plan for it and be glad if it doesn’t. Statistics show that 80 to 90 percent of adults today will spend at least 3 months in some sort of nursing home or other care situation, either for rehab or to live out their last days.
If there is a light at the end of this tunnel, it is surely an oncoming train.
This is a call to action for society and for each of us as individuals to speak up and seek new ways to care for the “happening now no longer impending” demand for services for the elderly.
Is anybody listening?
Care of elderly autistic
warehousing older adults with autism in the name of “elder care”
3 thoughts on “Care of elderly autistic”
This is such an important article. Thank you. But first I also want to thank you in general for your ‘Old Lady With Autism’ emails/blog. You offer such wise (useful) advice in such a lovely quiet “voice”.
Like you I am an older very late diagnosed woman (70 years old!) and so your articles/topics are of particular interest and value and rare. And today’s even more so.
Re: elder autist care: It’s been something I’ve been thinking a lot about re: the future, being alone in the world.
Even as a young woman when I would visit friends in hospital, often in a shared room and would experience the general lack of privacy, horrid intrusiveness, and in particular the TV forever-on (often in discord with competing televisions) I would think well I’ll just have to kill myself (seriously) before having to suffer such a fate if it warranted an extended situation (too young still to imagine even the idea of “assisted living”) .
Recently I’ve been exploring far far less expensive ($ Another huge problem) and far far better assisted living options in Chiang Mai Thailand than those in the States. Likely another one of my fantasies and I doubt I’d have the courage or money to make such a move, but it is food for thought.
Plus, I’m gratefully not there yet that I have to decide. While Thailand may not be aware of autistic needs but from the looks of even the least expensive places they seemed to offer a kind of serenity, and sensitivity.
Your description of your mother’s situation gave me the willies (I’m so very sorry that she and you had to suffer that).
I hadn’t figured on the lack of agency one has in such a place so total that you would have to socialize in that way or god forbid go on outings trapped with others.
Once, because I live alone and had no one to go with for some paid time- off at work, I signed up for a week discount vacation at a high-end spa in Mexico—I was still pretty unaware of my challenges at that point (undiagnosed I always thought I could /should be able to do things like others (neurotypicals) and it was my fault if I failed).
And so I signed up and was soon plopped into a living hell situation. To be sure different from a hospital and or assisted living facility. But for me not that much. It took me the first 4 days figuring out how to make it a replica of my life at home (huge amount of silent time in a room writing reading) and “get out” of the endless “jolly” wellness classes, walks, group sharing, exercises, health seminars…..
Even what I had looked forward to —“wellness” treatments for stress described as “bliss”— found me one morning on my back wrapped mummy-like with red-hot rocks (yes!) being placed strategically on my body and then left by myself while twangy, new age music was piped in. I became so claustrophobic I panicked. I tried to free myself I couldn’t. And my calls for the attendant went unheeded. I had to use every breathing, mantra, meditation trick I knew to try to calm myself and get me through the 30 minutes.
Now, obviously hot rocks on my body is not the kind of treatment I’ll find at the very low-end assisted living situation I may well end up in but it goes to show that even what’s advertised as a glamorous retreat can be doom to a elderly woman with autism. all best, Marylyn
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This made me cry as it is a great fear with me that I will end up in some sort of’Care’ facility.
I have long been aware of what awaits me if that fear eventuates. I witnessed the abysmal treatment my mother was subjected to. Her death, as result of sepsis from bed sores left unattended for months, was a relief for her, but the anger I feel, even now, 25 years later, is palpable
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Oh my goodness, sounds absolutely awful! Thank you for sharing your findings.
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