Autism test results?

Have you taken ” Autism tests” ? What do the results tell you?

There are many places on line that offer free “autism tests” that you can take, from a simple yes and no format to one of those complicated things where you grade each reply to the intensity of response, from greatly disagree, partially disagree, slightly disagree, neutral, slightly agree, partially agree, or greatly agree.
I have a lot of difficulty with many of the tests because they are not specific enough. “what do they mean by that”??? is my response for a lot of questions in these things!

After learning more about assumptions and ideas about autism (which are so rapidly changing today). I got better at figuring out what was intended, and better at understanding the questions and “what they meant by that”.
Some of the tests I took several years ago are being proved to be based on false assumptions or using completely wrong criteria and “double empathy” mistakes in how results are tabulated, deductions of meaning in scores of these tests are made.

More diagnosing professionals are beginning to rely on things beyond test results and “observed behavior” . There is much more emphasis today (at least in up to date diagnoses) being placed on observing and discovering our neurological processing struggles.

In some of the forums I have participated in recently, newly diagnosed individuals report their professional is referring to processing problems in any of the senses.
Proprioception seems now to be playing a much bigger part in informed and up to date diagnosis, with professionals beginning to look especially for processing troubles surrounding proprioception physically, and also with interoception.
(the latter would also have a great deal to do with one’s social interactions!)

We can obtain test scores for most of the available on line (and most are available!) used for diagnosis, but we need to learn the significance and meaning behind the questions to understand what has been tested and how the scores relate to our individual ways in autism.
Most test results give scores, but do not go beyond that to explain the how and why behind them!

Professional diagnosis process usually is summarized at the end, when your diagnosis is explained. Frequently the results are in writing, may even include a graph or chart. Test results may be explained.
The results I got included summary of neurological testing explaining that I had 35th percentile audio processing and 25th percentile visual processing.

This means that I am not good at all when it comes to things I see or hear, especially in “real time”. I had to think a while to understand what a true disability this is! So many painful past “whys” were answered. Autism! Nobody knew!

My word understanding and usage was in the “brilliant/gifted” category.
I have since reasoned that this is because it is the only part of my sensory processing that actually “works”. I have relied on reading and writing a great deal over the years to help me understand and interact in the world. It is my pathway to understanding when so much else has failed me.
I developed my word skills like a heavily used muscle.. it grew with use!

I always knew I loved reading and did better when I read things such as instructions or explanations, maps, graphs, and charts. Now all these years later I can understand finally “why” I rarely succeed in group interactions, “why” I often got so many things wrong when being taught in the class room from lectures and discussions or when movies or demonstrations were done without printed support/supplement. Knowing the extreme weakness of my sensory processing in vision and audio related interactions made perfect sense. ” So that’s why!!!!” Suddenly I understood so much of the painful past when looking at it from this new perspective.

My poor proprioception and lack of facial expression were noted and commented on as was my way of speaking ( stilted, didatic, lacking emotion) Although I feel very strong emotion it doesn’t usually come through in my verbal communication.

The summary has been very useful because it not only interpreted the test results but it explained them in ways I could use to make my life every day easier.

I have been able to understand how so many misunderstandings arose from my autism, so many “whys” answered when I learned how very poor my visual and hearing processing are.

I now know to be extra “wary” and careful if and when I expose myself to potential social or professional interactions. If problems arise I can understand how that might have happened. It doesn’t necessarily keep me from making mistakes when trying to force myself to interact in any setting with people in “real time.” Yes, that really is a handicap or a disability. ( I don’t agree that my autism is a gift as some people claim). Everybody’s opinions may be different.

I know to ask for instructions or communications about directions in writing. I know I will never have much success at interactions with a lot of people in noisy places, so I have figured out how to avoid those as much as I can and substitute other communication or interaction in other ways whenever possible. By doing this, I am better able to prevent myself from becoming overwhelmed, stressed and anxious.

Doing so many social things is incredibly hard when I miss so much. Now I know why!

I hope if you get a professional diagnosis, that you will ask for a written summary and explanation of the diagnosis and what weaknesses and strengths were noted. Talk it over and ask as many questions as you can, if given that opportunity!
By knowing these things we are better able to do self accommodations that will help us every day. By knowing and understanding how autism affects us (this is going to be very different for each of us) we can forgive ourselves and others for life long struggles and hardships, and we can figure out new and better ways of doing things today.

Autism Diagnosis can be life changing.

Approximately 6 years from my first suspicions about a possible diagnosis of autism, and 3 years from actual professional diagnosis, I am taking inventory.

How life has changed! It is difficult to be specific, since changes have taken place gradually as I learn more about myself, the nature of the neurology I have been given and how it has affected everything in my life from my birth onward.

Diagnosis first of all , self understanding of my autism, was a series of “aha” moments, small discoveries that added up to the conclusion that I was/ am indeed autistic began with those descriptions of autistic thought patterns, physical and emotional struggles with misunderstandings, misperceptions, and poor performance. One by one, the light went on. “I do that” “so that’s why” “Oh, that makes so much sense” as the series of autistic diagnostic criteria and discussions with others revealed details about the ways we experience our autism .

At first it was very difficult to understand that each of us experiences our autism quite differently, and that we experience certain aspects of “performance deficit” “problem behavior”
“processing problems” “brilliant and highly above average performance” in varying aspects of our lives. It was hard to figure out what I had in common with so many autistic folks on the websites with autism descriptions, on the blogs I read, on the discussion groups where people talked about autism in so many ways.

One thing that helped a lot was to try to remember all the problems I had in childhood. Misunderstandings, Hurts, discipline for being “bad” even though I never believed I was doing deliberately all the things I was blamed for, Problems at school, being bullied, all went under my mental metaphorical microscope to be examined closely. I came up with loads of struggles and hurts from the past.
This exploded to upsets of my young adulthood and right through my present day more recent problems. It seems certain experiences followed me right through my life, being uncoordinated, being bullied, making people angry without a clue as to why, diligent research and activities directed at specific life long interests (horses, humane issues surrounding domestic animals) super high word skills both in reading and writing, very very poor performance in other areas of life skills.

It started to add up when I was able to compare what other autistic folks described and explained as their autistic experiences. The diagnostic triad, social struggles, communication struggles, and rigid patterns of behavior and thinking added up to my own brand of autism once I was enlightened enough from painful search of my past to see it.

Suddenly I could see how autism was behind so many of the painful experiences of the past. Everything was not, after all, “all my fault” as I had believed in my soul… I had been told and punished for misbehavior, deliberately being bad, causing trouble, having disappointing school interactions and grades, being in general a nuisance and a problem which must be punished repeatedly and still failed to perform or conform. I was a huge disappointment, a behavior problem, a bad person! No longer!!! What a relief to finally understand how autism had its works in the past and nobody knew!

I have less emotional pain, since I learned how to sort old painful experiences that replayed constantly in my mind, causing anxiety and emotional upset over and over. I learned how to file such memories under “finished business” in my mind after sorting them from the new perspective of how autism had worked without anybody knowing or understanding. If there was nothing to be done about the specific painful memory today, it went into that metaphorical mental file. Every time that painful memory came back up after that, I simply stopped it as best I could and said to myself “that is finished business” and sent the memory back to the file. There is a detailed description of this process elsewhere in these blog pages.

I have been able to see how autism worked, file old memories that caused repeated pain (so many of them it actually impaired my life) and best of all I have been able to forgive myself and others for all those events because of course, nobody knew!!! Such a relief!

Knowing my diagnosis finally gave me the perspective/platform to see all those old events and the beliefs and emotions surrounding them in a new way. So healing!

Learning about my autism neurology, and finding my worst struggles, gave me the opportunity to think about how I could do the things that were hardest for me in new ways. I could adjust my activities, my surroundings, my ways of doing things to make things go more smoothly and be less distressing every day. I recommend that we tackle the very hardest and most painful things from every day life first, and as we realize we are stressed and distressed, continue to make adjustments in the way we do things for daily living, for special events in our lives, special projects or holidays, vacations, how we handle anything that is physically or emotionally distressing for us.

Having made many adjustments to my schedule, my activities, my social interactions, etc, I am feeling far less stress and anxiety, and finding more peace and ability to give myself comfort and adjust even small details to make life continually more “doable”. I don’t spend all my time worrying about “what if”. I am learning I can handle almost any situation I choose to put myself into and that my life will go on usually with no permanent damage if I make a mistake. ( that was a huge one! )

We can make so many choices over the way we want to “do life”. First we need to understand we do have that power within us, that we can figure out better ways to do almost anything. We can ask for help if we feel we can not do this part alone.

Others in your life may resist change or cause difficulties for adjustments we may want to make. Things can generally be negotiated and compromised and support can be gained, but it is unfair to make demands on others that everything in their lives must change completely as well.

Find yourself a good support group of older autistic adults, there are many many of them “out there”.
Ask for insights and suggestions about how others have solved problems surrounding their autism.
Ask first, if you need to, for explanations about whether the struggle you are facing is somehow common to other autistic individuals.
Forums are such a great source of so many years actual lived autistic experience and it is great to find out you are not alone, that there are others who actually understand!

I will not name support group forums because there are hundreds and the ones I like may not be helpful for you at all.

There are all sorts of autism support groups from age related, gender related, politics and social justice related, medical basis groups, and more.
I had to try maybe 15 or 20 of them before I found one I consider my autism home on the internet.

Make sure the group you join for support is just that, a social and emotional support group. There are information groups, study groups, news groups and of course thousands of blogs and social media pages. See which sort of group it is in the group’s rules and descriptions for best results!

There are chat groups, in person support groups, and so much more. You don’t have to do this alone, there are so many resources and options available. don’t give up, you will find something just right for you out there.

If you are just getting started, I wish you well on your journey of self discovery. Even after 6 years from my first self understanding of my being autistic, I am still having insights and learning new and better ways to do things. Even at this old age of 71, things keep getting better, less painful and upsetting and healing. I’ll be sorting the first 65 years for the rest of my life, but it has been so helpful to know. Diagnosis can be life changing. May all good things come your way in the impending new year.

Autism for older adults

Facebook page compliments this blog

Find the public group “Autism for older adults” on Facebook
Autism for older adults is a study group around finding diagnosis, understanding the nature of autism. and adjusting to an autism diagnosis.

Not for social purposes, not for political based autism discussions, not for emotional support, but a place to gather more information and insights about these 3 topics, which I address here in this blog.

Consider the face book page a supplement with more information and links to current autism information all in one location. May you find what you need to keep you informed as you find yourself in your new understanding of autism and your adult diagnosis. Thanks for looking.

Old people and autism

Getting older and learning about autism at the same time

When I started this blog it was about my hunt for diagnosis , trying to understand autism, and to provide information for other older adults all in one place regarding finding diagnosis, learning about autism, and all the adjustments, self understanding, and finding our way as we age.

When I first started this blog, there was very little “out there” on the internet about Old people finding out they are autistic so late in life.

There is still very little information about the ways we change, the ways we age, the things that are different about us from young people diagnosed as autistic earlier on. I see many blogs and articles right now about “late diagnosed autism” from those in their late teens through their 30s.

We go through so many changes as humans from infancy through our very last days on earth. None of us are the same as we were when we were 6 months, 6 years, 16, 26, 46, 66…. we continue to adapt and change. Finding we are autistic can give us so many insights into our past , our self image/self perception and self understanding, even at this very late age.

Recently I have been applying for work, trying to find a part time job that can help with expenses which keep going up and leaving our fixed income more and more inadequate to cover anticipated costs. So that is the background. Here is the point of my story.

As I put in applications and communicate with potential employers,( on line, on the phone, in person) I am bringing up the fact that I am autistic. ( Advice from some quarters says do not reveal diagnoses, struggles, or personal problems until after you are hired. Fake it. It just doesn’t seem right to me to do that. )

I have got some interesting responses.
Some simply stopped messaging or communicating.
“In person” responses include “I never would have guessed” and told me how well I communicated.

One person said “oh we can help you with that”. ??????? Next came an explanation about special needs training programs (ignoring the fact that not everybody can be trained over their neurological impairments /struggles back to my analogy about teaching a fish to climb a tree. Sometimes the things we have been given to work with will not work as intended for certain applications) I shuddered inside and thought about how often I would be written up after I had the training because I was outside the guidelines spelled out and trained up for) Simply telling me I need to do something to be more effective may not help me perform as expected. I know full well some things expected of me have been woefully above and beyond the performance I could provide, or that performing them took a huge mental and emotional toll.

I have explained to potential employers that I have learned how to look “normal” but tried to enlighten how difficult it is for me to maintain that performance when my visual and auditory processing is so slow and inadequate. I always fall hopelessly behind to my consternation, distress and anxiety and the employers or co workers disappointment and maybe anger. No matter how hard I try, no matter how much I understand what is expected of me, sometimes I just can’t deliver. I want to avoid setting myself up for that sort of problem now I understand my autism and the reasons for so many failures of the past.

Of course that immediately makes me unqualified for certain jobs. I would be unqualified for a job as a rocket scientist, a ballet dancer, marketing pro, etc too, so that does not hurt my feelings, everybody has strengths and weaknesses.

The other day I was actually offered an alternative job than the one I interviewed for, more in keeping with my processing abilities . I am interested, after 50 years of applying for jobs and working them as neurotypical, whether I can get a job as openly autistic, and also whether my newfound insights into my self will help me negotiate the social hazards and avoid the eventual bullying and frustrated insulted aggravated and offended co workers I seem to garner in spite of my best intentions and trying to be a “team player” etc.

I have no way of learning if my old age is also a factor in my perhaps not being considered for work.
I know many individual are overlooked for both their late ages in spite of work experience and good work records, their appearances or other unverifiable judgements being factors in the hiring process.
I suspect that many employers when learning a potential employee is autistic will leap to judgement and avoid hiring simply because they “don’t want to deal with that” even if they would not have to contend with the imagined problems they conjure up when they hear the word “autism”.

I am very serious about finding a job , this is not a blog experiment or a way to explore social issues, it is desirable for me to find work and bring in income, but as in all my other experiences since learning of my autism, I report here because I have hope that others may gain some insights or self understanding in their own growth after learning of their autism as an elder.

Heading into the holiday season of 2022, late year best wishes, may next year be the best yet.

Autism Rigid Thinking

When we get stuck on an idea

One of the triad of features needed to diagnose us as autistic is “rigid thinking” and or rigid behaviors.

I had to laugh at myself a day ago, I got caught in a classic example of this behavioral pattern. Here is the story and a little more info about rigid thinking as part of our autistic experience.

Every day things can sometimes make me frustrated. I use a brand of toothpaste that has a flip top cap and which is very wide with a small nozzle like opening in the very middle.

Stuff collects between the hinge and the nozzle, when the tube is almost empty I must manipulate the thing with both hands to get a glob of tooth paste to emerge. ( I always use all the tooth paste, my parents taught me to be frugal, so throwing the tube away at that point is not going to happen).

I have spent the last week fighting to get increments of that last tablespoon of stuff onto my toothbrush, and cursing whoever designed that flip top roundly.

I am a compulsive tooth -brusher so this has happened up to 5 or 6 times a day for the past several days.

My husband happened to come into the room yesterday when I was struggling with the tube cap and I complained heartily about the design and the difficulties I was having.
No sympathy there : his response was “why don’t you just unscrew it?”
It had never crossed my mind that these flip top tubes were installed as screw on caps.
I was so focused on the design flaw and the struggle I was having I never explored other options. Of course I felt such a fool. Why had I not thought of that?

This sort of thing has happened to me all my life.

My intense focus and intent do not allow me to step back and explore other options. I have been ridiculed and mocked for not understanding things that seem simple and obvious to others.

My autistic rigid thinking does not seem to allow me to see that there are options in the way I address almost everything.

Once I learn a behavior or a thought pattern, it rarely occurs to me to change it. You can understand how limiting this can be. I continue to gain understanding of how profoundly my autism affects all facets of my life.

I had no idea why I have struggled in so many situations, and felt so stupid and humiliated, was shamed and embarrassed when I finally understood what seemed obvious to everybody else all along. But it happened over and over, from the time I was very small until just yesterday, and I am positive I will experience this again and again all the rest of my life.

I remember long ago having a discussion with a friend about how he recognized some of the sick behavior patterns he had developed in his unhealthy home situation as a child and how he was able to understand that and overcome it.
I remember distinctly, thinking that he must be brilliant to do this on his own, that any individual capable of figuring out such a thing and being able to self understand, self motivate, self learn/teach healthier and better ways of life must be a genius.

I had recently finished a year of therapy in which I learned the same things through my counselor, who had to point out that I could make choices in my behavior in the way I did almost everything in my life. I had to be taught healthier communication, and how to recognize my emotions and how to choose healthier ways to behave in almost all of my life situations.

I had not been capable of seeing these options, but had to have them spelled out, explained, and the new means of choosing, communicating, and behaving carefully taught to me.

Not only autistic individuals but others, too, can get caught in rigid thinking, especially if trauma and abuse are involved. Autistic people tend to have a natural inclination toward this behavior pattern due to our neurology.
We are so consistent in applying rigid thought and behaviors to our lives that this is used to sort the autistic individual and identify them. We must have rigid thought and behaviors to be diagnosed today as autistic. (see references to Autism’s pioneer Lorna Wing and the diagnostic triad of behaviors)

Use the internet to learn the many ways rigid thinking can apply to our thoughts and behaviors. Most all of the articles you find will be based on children’s behavior, since there is very little research having been done on older autistic adults, or even younger date.

As the kids diagnosed in the 1980s and later are in early adulthood there is more interest in learning how autism ages. I hope you are finding the information you need for self understanding as you explore all the ways in which autism works in us even in our very old age. I am 71 as I type this, diagnosed at 68 and discovered my own autism and began to learn about it around age 65. Diagnosis helps so much with self understanding, I will be sorting information and having “aha” moments like the one I described above until I die.

I am so grateful that I finally have the opportunity to heal and understand all those painful “whys” of a lifetime lived before I ever discovered autism was the answer.

Autism Diagnosis

What is changing today?

Changes are coming with science’s new understanding of autism.

No longer is autism simply about how individuals behave. No longer do all doctors and professionals believe autism is something that can be “trained” out of us!

Science and recent studies have continued to describe not only behavioral traits, but scope of intelligence, ability to process sensory information, physical traits, genetic backgrounds and specifics, gait, and science finally hit the jackpot when studies and scientists began to see that autism can be described as being a condition of uneven neurological development. Autism will be different for every single individual because each of our neurologies developed or failed to develop in different ways. Think about it! No longer will autism studies be based on finding key behaviors ( all autistic people use self stimulating behavior) ( all autistics struggle to communicate) “all autistic people think in pictures” No more assigning traits to all autistic individuals or looking for shared characteristics outside of unusual neurological development.

No longer is autism a mental illness which causes us to behave in odd or difficult ways.

Autism is now seen first as something we are born with, and not due to the way our parents treated us, not due to our traumas or our early childhood experiences.

The day is coming soon when those learning to diagnose autism will look for neurological signs… they will seek out sensory processing differences and difficulties and take a second look at those of us who continually or consistently out perform others in certain areas. There will be neurological tests for perception, sensitivities, sensory testing of all sorts (because all senses are based in our neurology).

Coming soon will be the removal of assigning of certain behavioral traits to all autistic people.

“Autistic people don’t look you in the eye” “autistic people can’t do things like have relationships, have friends, marry or raise a family” “autistic people all do this, or don’t do that” as signs of autism will be discarded in favor of testing sensory processing. Scientists or diagnosing professionals will be looking for signs of neurological struggles including any neurological conditions now recognized, such as epilepsy, dyspraxia, ataxia, struggles with balance and coordination, struggles with any sensory input and unusual presentation of sensitivity to sensory input or lack of sensitivity. We already know this varies greatly with each autistic individual.

Individuals will be assessed on their neurology and not their troublesome behavior.

I have recently learned that a few teaching schools (universities, colleges) around the USA have begun to have classes about adult autism instead of devoting only a page or two in a general medical text in specific studies.

I see this as signs of good things happening for many autistic older adults.

These are just stirrings and first movement… something I had never thought I would see in the very limited years left of my lifetime.

I find this very encouraging.

Learning about Autism

Where do I start?

What if you have just started thinking you might be autistic? How do you go about finding out?

Lots of us muse and speculate, remember, sort and mull ideas, emotions and information we already know, or think we know before we decide to take a closer look to gain deeper understanding. Some of us never get beyond the “what if” stage. That is OK.

For those of us who want to know more there are thousands of pages of information and thousands of hours of podcasts and videos or other visual media available. There are at least a few hundred books, articles, blogs and pages about adult autism available today.

I just jumped in and began looking for information from all of them. Since I am most comfortable with books, I started there, looking for “training wheels” sort of “beginner” books with simple basic information about autism.

I soon learned autism is a heavily divided and contested topic, with many very strong opinions “out there” trying to shout each other down and to claim their way to address autism is the best or only way and to attempt to erase other ideas or positions, opinions or outlooks.

Each of us must form our own opinions about the politics surrounding autism.

I looked first for very basic information. I quickly learned about false information and controversial “cures”.

Be skeptical when you start learning, question everything and see if claims hold up in the light of other’s input.
Look at all possible sides of claims and opinions expressed and use your own judgement.
I did not suspect all the surrounding political and unscientific hooey that I would find.
Being aware it is “out there” can help sort fact from fallacy. Don’t take anything at face value. Look for studies, documentation, references, links that agree and back up claims.

Start by gathering basic information about the nature of autism, how it works and expresses itself in individuals, watch for ways which you might have experienced some of the autistic struggles and differences described.

Most of what is written about autism is aimed at children and at parents. With this in mind, I found it very useful to look at my own childhood/growing up and to compare my experiences with descriptions made on articles addressing childhood autism.

You may find many of these before you find the 400 times as rare articles on older adults and autism.

There simply has not been interest in older adults having autism until very recently. There are a few on line forums for autistic adults. There are articles addressing “late diagnosis” of autism. These articles are generally by 15 to 30 year old individuals! The information and insights in them may be helpful to you none the less.

The pages here are intended to help those older adults new to the idea of autism find basic information all in one place. There are online forums like this and also several other blog pages which have insights and information as well.

If you prefer to view information or listen to it, there are podcasts and videos available too.

Once you have basic information you will have loads of questions. Getting more input will usually answer most of these, but I found that joining a group page where I could ask specific questions about autism helped me tremendously.

I got a lot of “whys” answered by others who shared their experience and insights of being older autistic adults and having been diagnosed or self identified for much longer than I was.

Getting input and building an information base and a foundation for understanding was the first step. I think it is good to continue to seek out new information and more insights as you grow in self understanding and begin to sort your past with new perspective. If you are like me, you will be so interested as you go through the process, that you will keep seeking more understanding. So many “whys” of the past answered, finding “how to” is so helpful!

I am about 6 years in from my first “I wonder” thoughts through diagnosis 3 years ago. I am still having “aha” moments as I learn more about autism and remember things from my past experiences.

Things keep getting better. I’m here cheering you on as you begin your journey, knowing the information you obtain now will be useful for the rest of your life. You are definitely not alone!

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?

Autism proprioception

Every day struggles with proprioception

I just sat down to type a few paragraphs and looking for a moment at the keyboard, I noticed my shirt was wet! I had just had a drink from a sports drink bottle and dribbled/spilled down the front of my shirt. This is an every day “thing” when I drink from a cup, glass, or bottle. Every day! Imagine how good I am at using a spoon with liquids such as soup? Many older adults were constantly in trouble for spilling, dropping, misjudging distances when sitting something on the counter or tabletop, etc., etc., etc.
Sometimes I just get tired of it all!!!!

I was constantly being scolded as a child for “not paying attention” to what I was doing and making a mess or breaking things, knocking things over or dropping them.

Even more than that, I was constantly running into things, furniture, people, walls, falling downstairs or up them.
I always had food down my front or my skirt. At least when I drank water the spills would dry without leaving a mark. I loved the water fountains at school.

I learned to leave milk, soup, and other messy things alone if I was wearing my “good clothes”.

It was not until I learned of my autism in my late 60’s that I learned that this experience is very common for autistic people. Clumsy! Inept! Uncoordinated! Careless!!!!
What a relief to learn that my physical struggles all my life were not “all my fault” and thoughtless, careless, stupid or worse!

I have talked about how uneven neurological development is the hallmark of autism. This also goes for the sense of proprioception, the lesser known (not one of the 5 familiar ones we were all taught about in school so many years ago). of the senses. Uneven development of one’s senses can lead to poor proprioception, giving struggles with depth perception, balance, poor coordination and much, much more.

Proprioception is the sense that tells us if we are right side up, sideways, or upside down. It is what tells us how much muscle we need to turn a door knob, push in a chair at the table, how much power to use to turn a key in a lock or pick up an egg without crushing the shell.

Proprioception tells us where we are in space, how close we are to any object or person/thing, how fast we are going, how fast something else is going whether approaching or leaving, etc, or if we are standing still, and proprioception helps us judge distances as we go there.

Same for things like brushing your hair or teeth, shaking hands, walking around furniture or a door frame without running into it. Catch a ball? Ride a Bike? use a skateboard, roller skates, jump rope??? Proprioception tells you how far to lift your feet and how hard to put them down, how much power to use to keep yourself going up the stairs or how much brake power to apply to keep yourself from going down the stairs too fast. If your proprioception is off, you will end up not being able to successfully do many “normal” things that most people take for granted.

Most of us have seen very small babies learning how to use a spoon. Most of us have witnessed children’s early attempts to walk or to negotiate steps.

For some of us, it is not a “learning how to do it” or a “being careful” or “watching what you are doing” thing, but a “my neurology fails me at times” issue.

For most people with standard neurology, these things are learned successfully and never much question about performance of most daily acts of living. Not so for people like me, who at age 68 generally prefers to use a straw with any liquid, who often must change clothing after a meal, who is constantly covered with bruises and constantly who often has sore toes from hitting the legs of furniture as I try to negotiate my own living room, bed rooms, kitchen, etc.

Uneven development of our neurology can result in day to day struggles and frustrations.
If you have been clumsy all your life, were scolded for it as a child and mocked or teased as a teen through old age, maybe this is one more sign that you may have an autism diagnosis, even if you never suspected.

Autism Stims

hidden stims revealed

We know stims are self comforting devices we use to help regulate our behavior and to provide good feedback when we are feeling stressed, distressed, or simply need comfort or more ( or different) sensory input than our current status. It is a device of self input that helps us feel able to cope with whatever demands life is making at any time.

Older adults have spent a lifetime trying to change their stims.
They have been told to keep themselves quiet, stop that, don’t do that, and frequently not only chastised but sometimes punished or physically controlled by others through touch or application of physical restraints, etc.

As an example, I used to suck my thumb when I was little . Approaching age 4 I was pressured in many ways to stop sucking my thumb. I was scheduled to go to kindergarten and there was fear I’d be mocked or ridiculed for thumb sucking. The campaign of many adults pressuring me to stop sucking my thumb was eventually irresistible and I stopped sucking my thumb. Instead I began picking fuzz from my favorite blanket when the scent of the blanket and its softness did not comfort me enough. I like the way it smelled and soon began putting the fuzz in my nostrils to smell the “blanket smell” better. That became inconvenient because I was not able to carry the blanket with me wherever I went to comfort myself. that comfort behavior was switched to my chewing my finger nails. I kept that habit for about 7 years, when social pressure made me self conscious about my grubby hands and nails (public shaming every day by one of my teachers in middle school). I began to chew gum and got scolded in school, so I switched to chewing toothpicks, then sunflower seeds, and finally discovered jawbreaker candy which I could sneak into my mouth in the change between classes and which would give sweet comfort all through class without anybody ever suspecting, if I was very careful! I had to give up jawbreakers after suffering bad and broken teeth, and for the past 40 years have been over-eating instead.

This took a lot of mental sorting to find the pattern of the hidden stim in the past, from its origins to today.

How many evolutions have stims passed through in your lifetime? Do you substitute alcohol, drugs, super intense hobbies or activities of any sort for what was once an innocent childhood stim?

If your current stims are hidden it may be a bit of difficult emotional homework to dig deep and discover the links to attempts to find self comfort and self regulation and still be “socially acceptable”.

I was re-reading info about adult stims the other day, and laughed out loud with a sense of “aha” discovery. Explanation following :
Stims can be had from arranging and re-arranging things, From moving things about, from changing visual patterns or even concentrating on various images or things that move and create pattern, such as watching a ceiling fan or the motion of a spoked wheel, or looking at op-art or other strong visual patterns. Since my stims are direct and physical, I had not thought very long about this form of stimming.

I want to relate something from my sometimes very exasperating and frustrating childhood.

Our mother was perpetually obsessed with trying to make our poor, low income, tired and shabby little home look elegant and sophisticated.
In this quest she continually decorated with new details, dyed the furniture covers, throw pillows, Bolsters, or other items she sewed.
Mother made elaborate arrangements of fruit, flowers and other displays on the table or in other places.
She used us ( me and my sibling) as “moving crew” and perpetually had us dragging furniture from place to place in our living room. “put it there” “oh no that doesn’t look right, move it over there” “no that’s not right either, try here”. This could go on for an entire afternoon.

My poor father came home to a different house many days of the week. He never knew where his favorite chair would be, never could appreciate the “new look” which was always clever, creative and satisfying to our mother, and exhausting to us as her furniture movers, cleaners and physical laborers.

I laughed out loud when I realized that all of that had been our mother’s stims!

Think long and hard about some of the things you do that are very characteristic of yourself. Are you practicing a moderated version of a stim???