Care of elderly autistic

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?

Getting older with autism

Many of us born 40 years ago or more grew up on our own, without insight into what made is ‘different’ ‘odd’ a “weirdo” , nor did we have any idea that the struggles of our lives were different or greater than others around us. We grew up self critical, not understanding why things that seemed so easy for others were so very difficult for us. Why, why, why can’t I ‘get it’ , ‘do it’, ‘behave like others’, ‘make friends,’ ‘be good at a certain skill or schoolwork’, why can’t I sit still, why can’t I pay attention…. why? Now we know the answer could be autism.

Autism is neurological in origin, our nervous systems are different and we learn to use our bodies and brains differently because of those differences. This is ‘neurological processing’ differences. But autism is not defined by how we process things from a neurological basis, but it is defined by our behavior. This is why autism is lumped in with other neurological issues which show behavioral consequences.

When I began to learn about autism I recognized myself not as I am today, but in my childhood and early life. I could see that most behaviors and problems I had when I was young were symptoms/signs of my autism. Along the way, in my early 30’s, I got some good counseling for unhealthy behavior I had learned in my early life, and was able to put into practice, without ever suspecting I was autistic. Those healthy behaviors have stuck with me and I suspect without those and a very reliable and supportive spouse, my life would have ended in misery years ago. I suspect there are thousands of autistic people today in their senior years who have not been lucky enough to learn about their autism and are still struggling with false beliefs about their perceived failures, weaknesses, misdiagnosed mental illnesses, and more. I would like to try to reach others who suffered as I did in childhood and early life, and who may be suffering now with false ideas about their self worth, emotional strength, worthiness, even wondering about their sanity and ability to recover.

Nursing homes, hospitals, and other institutions generally have no idea about autism and there are so many things that could be done to help people cope within the restrictions of their surroundings, and help individuals toward better health and allow better care.

As we get older, studies suggest some symptoms of our autism may grow in severity. An autistic person who is easily confused in every day life may become so confused in a care setting that they are diagnosed with dementia or other disorders. An autistic person who is distressed by sudden touch may fight bitterly when attendants try to give basic care to the bedridden or wheelchair bound, for instance. Those autistic folks who are upset by noise and flashing lights will not enjoy daily “social time” in a large room filled with echoes, television blasting and fluorescent lights flickering, and as a result may be restive or combative. Echolalia may be mistaken for mocking or other deliberately insulting behavior.

There are probably a hundred more issues that could be helped to make things safer and more comfortable for residents and staff if properly addressed through understanding of autism. So much misunderstanding and misery could be avoided or alleviated by enlightened choices on the part of the autistic person and those who care for or about them in any setting.