Autism Confusion

When you are unsure of almost everything

Because of sensory processing struggles, because of the problems I have with visual input or audio input, I have lived a life of anxiety, unsure of almost everything. I can not trust the things I think I see in any action or interaction going on around me. I can not trust my hearing to pick up on details, nuances, meaning, intent. I can not trust my body to act/ react/ perform as I would like it to.

In any “real life” interaction, whether real time “face to face” interactions, Zoom, video presentations, movies, lectures, on the telephone, texting/messaging in real time, I am left behind very quickly, with only parts and pieces to try to piece together “what is happening” or “what has just happened.” I often have to ask people to repeat themselves or explain things they think “should be” obvious and which usually would be obvious to others interacting with them.

What does he mean by that? Why did they do that? What is expected of me? Why does she seem impatient, angry, upset? ( And I know it is something I did or am doing but I can’t understand “what” that is or why that would be upsetting???)

Growing up in this way, worried and wary of every interaction I might have with others breeds anxiety.
I am left feeling I must try harder to please and to work hard to be considered a “good person”, often offering ingratiating and “people pleasing” ways to try to defuse any potential anger or irritation.
I have a habit of apologizing frequently and over almost everything, I have so often been called rude, thoughtless, deliberately callous, cruel, mean, as well as being mocked and bullied when people around me long term see I just “don’t get it”. Obviously it is my fault, but often I can’t figure out how this could be so.

No matter how hard I try in any real life situation, I am always out of touch, off in timing, of poor understanding and needing explanations for so many things.

These are every day struggles for most autistic elders (and our younger counterparts).

I come home from any social interactions exhausted, discouraged, self questioning… did I do OK?

Did I annoy them or make them angry? Why were they silent for so long, why were they impatient, why did they do this, or that??? What did they want of me? How did I let them down? Will they avoid me the next time they see me coming? I don’t even often come up with “I should have said” or “I should have done” scenarios. Such is the nature of my disability to see and understand enough of any interaction to be able to spot “where I went wrong” in most cases.

Confusing, baffling, distressing!!! All my life! All the lives of most autistic individuals, I’ll bet. ( I can only speak for myself but sometimes I do wonder how similar in experience some of my life has been to that of other older autistic individuals )

I am currently trying to expand my small world. I am attending adult classes and/or interest groups at the community college and trying to learn new things.
Autistic rigidity of thinking might have made my world much narrower than that of others. Old age is supposed to do that too. I am in a phase of “self improvement” and trying to keep mental flexibility.

I come home from each session with my mind spinning, still trying to “get” the nuances, side comments, interactions, and innuendoes, hints, gestures, and hoping I “got it”. As a diagnosed adult I can understand my autism is making things difficult for me to seamlessly “fit in” anywhere.

As a child it was so very painful and always at the end, it was simply up to me to try harder because I was not succeeding. It must be me, I must mend my ways, must change and “shape up”, “pull myself together”, “get with the program”, “straighten up and fly right”,

Always back to my own stupidity, lack of willpower, thoughtlessness, weak moral character, etc.

It has been such a relief to find out that everything was not after all “all my fault” and that autism worked behind the scenes without anybody knowing it. Today I can forgive myself for the social failures I experience still frequently, because I know it is the autism working that makes me “not get it” in any social interaction. I can forgive myself for that.

But the feeling of being a social failure and knowing my effect on others, that still hurts, and I have not found a way to alleviate that part of it. I know I am not alone, that there are other autistic adults out there who have similar thoughts, feelings and experiences. In finding this blog and exploring aspects of growing old at the same time as discovering your autism, I hope you find what you need.

Autism diagnosis and Self Forgiveness

Late diagnosis of autism can be life changing

I read comments all the time from autism specialists and diagnosing doctors, comments made in discussions about autism especially among those who are not autistic. “what difference would it make?” “They have already lived their lives, they have already adjusted, they have made it this far” Even regarding oldest adults in nursing homes or in group living facilities of all sorts.

I want to point out that knowing about ourselves and understanding why we have had so many struggles, why things have hurt emotionally for so long, why our painful pasts were part of our every day lives and our wounds did not heal…. well, yes, that would be helpful to understand. Knowing the answer to all those painful “why” questions of the past can make a huge difference in finding a new self identity and finding one’s way forward in the future.

Finding my autism diagnosis was the most healing thing that could have happened.
Knowing autism was behind so many events of the past, painful struggles, embarrassing incidents, Social mishaps, missteps, mistaken ideas, bad decisions…( all the things that were blamed on my stupidity, my willfulness, my inept and thoughtless mind, my deliberate cruelty, my uncaring replies and defensive demeanor and so much more) were suddenly explained by that one word. Autism!

Autism explained my growing up family’s unhealthy behavior patterns, my missed diagnosis explained my own behavior, knowing about my autism suddenly showed me that everything I ever failed at was not actually “all my fault” as I had been blamed and trained to believe all my life. Autism was hidden deep within our family, with my mother, myself and maybe a couple of siblings as well all being autistic. Nobody had a clue!

Suddenly I could find ways to understand the painful past, to forgive everybody involved in those sad and painful struggles, and to finally find my way to better ways to live, find my way to better understanding of the past, find my way to adjustments I could make for myself to live a better life going forward.
No matter how old we are, knowing our diagnosis can make a world of difference in mental as well as physical health, in helping make life easier and less troublesome in a group home or a nursing home, or any other settings where autism sensitivities and sensory processing struggles come into every day life for the autistic individual as well as those providing care.
I have barely scratched the surface mentioning the multiple ways that diagnosis of autism can be beneficial for older adults. Add to that the lessened burden on mental health workers, social services programs of all sorts and to medical facilities and professionals.
Better choices in life from a position of self understanding gives the individual more autonomy, and the key to better mental and physical health along with a better outlook on life in general.
More studies need to be done with older adults. How do we live, how can we become more independent, how can we do self accommodation, how does knowing our diagnosis help us adjust to make our lives easier and better? How can we locate older adults with “hidden” autism?
As the Baby Boom generation ages there will be more autistic individuals entering care systems, more help needed on so many different facets/pages of ageing.

Diagnosis can be life changing. Diagnosis at even late stages of life can help lessen the coming burden for society as so many undiagnosed autistic individuals suddenly find new ways to live due to the insights that we gain in knowing we are autistic. What a relief.

Autism Warriors

The choice to make it all a fight

Something is happening that is becoming harder to ignore. I have always been a peaceful person, live and let live, agree to disagree if necessary, you go your way I go mine. I tell people I am a lover, not a fighter. The fight is being brought to my door more frequently lately, or it is being pushed on others. I see more hype and more anger and more frustration, more people being targeted for angry attacks. Maybe I am just getting old, but it all seems so destructive and not helpful.

Kind of vague and non-specific rambling so far, right? Let me try to explain. Instead of conversation about any topic, I am meeting more people in groups I participate in and host who are intent on destroying and shutting down anybody who says something they disagree with.

I am experiencing and hearing more from others who have encountered individuals who specifically go to pages and sites to post angry diatribes about how bad certain expressed ideas are, and “why don’t you do “this and this and this” instead of saying “this” .
You are harming autistics, you are damaging and hurting us, you are not supporting us if you don’t “this and this and this” (naming specific ways the host, the speaker, the selected ‘target’ of the attack is supposed to think, act, believe and to do .
I have left several groups because of this rage and focused furious attacks on members who should be allies. If one does not think exactly as the attacker, one is a pure enemy and must be destroyed. I think this is a great illustration of classic autistic “black and white thinking”
This seems to happen on all ends of the spectrum, from parents of autistic children to old people like me, to young and barely communicating individuals using forums for social purposes.

I know about trolls, those who roam the internet deliberately stirring things up and provoking confrontations for the sake of their own amusement, and sometimes in gangs, joining together and taking turns attacking or observing others do the attacks.

What is different here is that these same attacking individuals are posting about how they go about their ways, and report triumphantly that they had these confrontations with the evil parents of struggling children, the evil old person who uses the wrong words, the evil person who dares express an opinion or suggests the wrong idea or thinks differently than what they “should”. They seem to see themselves as heroes setting the world right and destroying the monsters. Too many role playing video games in their past? Who knows?

In my own mind, I have an idea how the world “should” be too. It does not include attacking or shutting people down, shouting them down, harassing or distressing them or deliberately provoking defensive arguments. Autistic people have been bullied enough in “real life”. Forums and groups need ( for some of us) safe places where we can discuss ideas and support each other in our daily struggles. Life is hard enough without finding ourselves in the midst of angry diatribes and being the focus of hatred because our thoughts are different. We already know we are different every day. We don’t need attackers within our forums as well. I wonder what places on the internet spawn such angry and self justified individuals. I wonder how so many are seemingly cheering each other on as if they were accomplishing a victory or banishing an enemy.

I believe all sides need to be presented so that others can understand what the arguments are about, can see what issues are at stake, and can learn for themselves so that decisions are not made on quick gut emotions but are also clearly thought out and decided on from actual information.
I guess it is just another facet of autistic communication struggles, this direct attack behavior thinking of oneself as a hero, but it is one that I have difficulty finding peace with.
I would rather educate and elucidate, validate and inform than spend time fighting and fleeing while trying to defend ideas and thoughts.

I am learning how to use the “block” or “ignore” button.

I wish I had the inner strength, the ability to think quickly, the emotional resources to try to help these individuals, but I begin to think it is not passionate beliefs or intense devotion to a cause that they are espousing as much as it is some sort of sport, much as when the dog discovers its first henhouse. How exciting!!!
There, I am showing my old age, but I never did pretend to be anything but an old lady with autism… or maybe you prefer I say “autistic old lady”.
I actually use either description of myself and I don’t have to pretend that part.
No answers, life keeps rolling on. Watching with interest.

ageing with autism

the getting older side of being autistic

My father used to quip about getting older “it beats the alternative”. Yes indeed, that is true.
Day to day struggles as we age make life harder for all of us.

Autistic people who are already struggling with life and how to get through it successfully may have more difficulty than whatever is “typical”. Nobody escapes it, everybody gets older unless they have achieved the alternative (death).

Health issues and simply living longer are extra difficult when autism is in the mix.
We are often less aware we are having physical problems due to autistic proprioception/ interoception difficulties.
Some of us simply don’t notice that “something is wrong” until it is discovered by somebody else and pointed out.
Some of us are afraid of going to the doctor, the clinic, the emergency room, some of us need a lot of support to do self care such as taking regular meds, getting regular checkups, “tune ups” and follow ups .
Many autistic people have hard times sticking to special diets, shopping for special foods or aids to help us be safer, being aware of safety, keeping ourselves and our surroundings clean and healthy, etc etc etc.

I am aware that those who have “normal” neurology may struggle with these things too, but I also wonder how many elderly with those listed problems might also be undiagnosed autistic?

We may be more prone to falls, to have more health issues, to get less care if studies of the past are correct. Overall, many autistic adults do not live to become old. Average age at death for “normal” adults is 70, average age at death for autistic individuals is 54 .

I guess I don’t have to emphasize self care and attention to safety as we age. We know we will all have more struggles as we get older.
Why not consider what things we can do at present to prepare for better self care as life gets harder.

Put safety precautions and self care at the top of the “TO DO” list today.

Autism enrichment

learning enhancement

stimulation for growth or comfort, adding wealth of experience

creating new opportunities for self expression, growing skills,

finding new ways to connect with our world.

When I was a very young child I spent my time in a ‘chair table’ seat which

kept me confined for much of the day. From the time I could sit up until I could walk with the aid of my parents holding my hands, I rarely left that table. My mother was autistic and I was her first child. She was terrified of germs since they brought me home as a preemie of 4 lbs with strict instructions to wear masks and sterilize everything!!!! I can remember spending time in that chair clearly. She would give me things such as measuring cups, spoons, some plastic toy or bits of food whenever I would get restive or call to her. She spent a good bit of time out of sight in another room but I could hear her, and often she had the radio on. The sounds fascinated me.
It got to the point that I was bored and restricted in that chair and began to fight being put into it.
A few whacks on my bottom got compliance at first, but soon after I began to fight in earnest. She finally understood that she needed to do something else with me. I was allowed to roam on the carpet or spent time in my crib with playthings.. when I was ‘free’ I was hit on the hands or the backside if I touched something I was not supposed to. I never understood why I was getting hit, It would come out of the blue and I never associated the punishment with the transgression. (that is another story).
A few times when at the grocery store my mother selected little “wonder books” from a rack and brought them home. She was a very poor reader, but I do remember her reading those books to me and my sister … the presence of my sister means I must have been at least 2 years old. How I loved the books! I was hungry for more books and as soon as I could talk I asked to be read to and asked for books when I spotted them in the stores. By 4 I was reading way above my age level, my first adult book was “Robinson Crusoe” which I found at the back of my grandmother’s closet on a visit to her along with a treasure trove of Will James, Sanford Tousey, and other books for older kids and adults. It is hard to describe the joy that brought! I started kindergarten as a reader but although we were taught words to read on the blackboard (boring, I already knew them) I was not allowed access to library books of the classroom in first and second grade. Instead while all of the other kids were reading, I was expected to work on my very poor penmanship and learning to print in first grade, then to write cursive in 3rd grade.
It caused me such pain to be punished like that. I felt only discouragement, the idea that I could write well enough to be allowed to read was never grasped. It caused me such despair that I struggled so with writing. I would never get to that bookshelf. ( I never did, in those classes) I was burning to get at the books!

About that time ( summer between first and second grade) my mother learned to drive and took us to the library a few times. I was so disappointed that I was only allowed to take out 2 books at a time. Sister could take out 2 books too, so that gave me 4 new books to look at. Soon I was pestering my mother for more trips to the library. I think she dreaded it and had very little interest in it.. it meant she had to read new and more difficult books to us (she was so dyslexic her reading was probably 2nd grade level).
Mother hated books around the house, ( somebody might ask her if she had read them, or ask her questions about them) although she usually had a woman’s magazine for the new recipe and craft ideas/ decorating ideas they contained. She hid my father’s favorite books in the back of the closet and refused to let him leave them around the house.
I read those magazines, and when I discovered my father’s books in the closet around age 10 I devoured every one of them. “How to make friends and influence people”, “Shepherd of the hills”, “Sgt York and his people”, ” How to build your dream home for under $5000.”… What if I had volumes of appropriate reading material instead?

I often wonder what might have happened if I had free choice and help in choosing special interest books and free- will selection of books at that age? I did not get that until I was allowed to walk to the library by myself at around age 12. I had to walk to school and the library was on the route. I came home with armloads of books several times a week.

What if I had been given more input and stimulation during the early years in that chair and in my first explorations as a barely-toddler. What if? ????

Fast forward to today’s children, especially those confined in any of many ways and in care (as are all infants and small children). Are children getting enough input from other sources besides tv and videos and continual exposure to electronic games ?
Are they having adventures in new places, seeing ,touching, feeling, observing, hearing,tasting new things every day?
At that very young age I was a sponge for knowledge, absorbing everything I could. Instead of being exposed to every possible stimulus and source of input, I was confined for the convenience of the adults in the house, shut away for the comfort of the adults, restrained and made to refrain from learning new things by the adults in control at home and at school.
Parents and caretakers may not be aware of the huge thirst for information and the inextinguishable curiosity that goes with many autistic children (and NT children too!)
Imagine nurseries, daycare, schools, institutions for care taking for both young and old people.

I worked in a child care institution before I retired ( most of the kids were autistic) and my mother was confined to a nursing home for the last 6 years of her life. I saw for myself the poverty of input on those “care” levels. Except for one ‘planned craft’ a day, it was videos, tv, music… and not much else, all day every day, even those in very limited amounts. (the kids had school and counselors daily as well).
I have seen the minimal interest in giving input and creative/ self expressive outlets to the residents there. “it just makes a mess” “what is the point?, it is a pain”.
What a desolate and vacant environment! Overworked, underpaid for the most part, struggling with their own lives, caretakers, parents, daycare workers and some teachers may be far less enthusiastic than the would-be participants.
I urge those who might have autistic persons in your charge to consider how lives could be enriched at every stage of living.

Autism and Interoception

How are you feeling?

Have you ever heard of interoception?
This a sensory function which is still being described, and there is still some disagreement over what its definition should include.

Interoception is the sense of your inner self which includes the ability to feel what is going on inside you.

The initial definitions were about giving a person ability to recognize inner physical symptoms of needs: when you felt hungry, thirsty, needed to go to the bathroom, felt pain or discomfort in your internal workings.

The definition has been refined over time and using recent studies now includes also your emotional status.

Studies are in the initial stages but tend toward showing that neurological ties to the inner body are the same that are used for ‘feeling’ emotions, and that yes, emotions are tied to physical feelings as well.

We all know that, if we think about it. Tension headaches, anxiety stomach aches, the burning that comes with anger and the churning gut of distress, and how do you suppose the term ‘heartache’ was coined?

Right now there is debate over which comes first, the physical sensations or the emotional processes involved in recognizing ones “feelings”. Some scientists are saying that the physical responses are the initial ones which cause us to then recognize the emotions behind them.

I think the jury is still out on that idea, but it is interesting to think about the implications.

Interoception as it is described today is related to recognizing physical and emotional status of our inner selves. It is the neurological sense that tells us ‘how we feel’ in the most literal way.

How is this likely to be tied to autism?

Interoception is believed to exist because of human neurology. It is being defined as another sense.
We are equipped with an internal monitor through a network of nerves which sense and report “how we feel”.

Autism being a function of neurology and strongly tied to sensory processing, can show its effects in any part of the human neurological system.
Many autistic people are not good at recognizing when they are hungry, thirsty, tired, whether their bladder is full, and on and on.
We are notoriously poor at sorting our emotions as well.
All of these issues are related to interoception because they are all issues of sensory processing within us.

I will use imaginary Sally as an example.
Sally was late to be toilet trained, she simply was not able to tell when she ‘had to go”. She often wet the bed. Her body did not wake her when her bladder was full because it did not recognize that discomfort.
Sally had a ruptured appendix when she was 25, and did not recognize the abdominal ache, which she reported as vague and undefined. She finally had uncontrollable vomiting which drove her to the emergency room where she was barely in time for her life to be saved by immediate surgery.
Sally will get so involved in a project that she forgets to eat, and when she finally does eat, she does not know when to stop, often getting sick from overeating.
She is known for her volatile temper and her extreme emotional outbusts.
All those struggles are likely to have their base in processing input from her interoceptive system.

Do you have signs of interoceptive struggles in your own life?

The Lost Generations

Since figuring out my autism, I have spent countless hours reading scientific papers, autism websites, personal blogs, and also I have joined a few online autism forums. One of these is especially for older people who have gone undiagnosed until recently. For those of us to finally learn we have autism, there is shock, relief, and a whole array of reactions. Many of us seem to go through the stages of grief. Denial, bargaining, anger, depression/sadness, and acceptance… back and forth. It is so wonderful to have the understanding and appreciation of others who have also experienced so many similar things.

I have been fortunate to get advice, insights, education and counsel from the members of the online group. Most precious to me is to know I am not alone, that i have a neurological condition which makes it much more difficult for me to navigate my world, especially socially and emotionally. I am so blessed to have the internet. I can communicate with ease and not be confused by body posture, eye contact, facial expression, tone of voice…not having people put off by my own oddness and appearance. Most of the people I communicate with are very direct without guile or manipulative behavior. What they say is for the most part what they mean. All of us grew up in a time where nobody knew about autism. We are able to share experiences and understand each others’ frustrations, concerns, struggles of understanding and coping, and share strategies to overcome the many ways in which our autism gives us trouble. Simply a miracle which could not happen without the internet.

What about those who went before? My mother was born in 1929, a child of the depression and in poverty. She too had autism, although I did not figure that out until I learned of my own autism. People with autism in earlier generations were the street people, the crazy uncle , the bachelor brother, the hermit, or the local cat lady. My mother’s family called her a simpleton, or said she was simple.

Autistic people in earlier generations were the quirky professors or music teachers, or the obsessive archeologist or scientist. They were manual laborers, odd job people, those assigned to simple back room tasks in domestic or industrial, or farming roles. They were folks in the poor house and housed in institutions because so many of their behaviors were not understood, and were assigned to severe psychiatric disorders. Originally autism was thought to be a form of schizophrenia.

Autism has always been with us. Statistics show we are much more prone to anxiety and depression, although that is not considered diagnostic of autism. Statistics also show our lifespans are considerably shorter than average.

What of those in nursing homes and institutions being medicated and labeled as intractable, hopeless, confrontational, combative, etc? My mother’s experience in nursing care could have been much better if we had known of her autism and asked for accommodations for her care. So many of the ways she was approached by staff and how she reacted to them could have been helped by simple understanding. I may talk of this more in another blog. It makes me quite emotional to think of how she suffered and how helpless I was to make her life better.

There are thousands of undiagnosed adults who have found their own way through life, never understanding that they had a condition that made everything in life so much more difficult, feeling like a failure, lonely because they don’t know how to reach out, frequently working low paid jobs or not working at all because of the social hurdles to overcome in society in order to perform even the most menial labor. How much better it could be to understand, to learn what has happened to oneself, and to know it was not your personal failings or lack of character which left one full of frustration, anger, sadness, and shame.

How much better to learn to cope in better ways, to learn to communicate effectively. How wonderful to have those around you understand your upset at sudden touch, loud sounds, flickering lights, sudden demands to change whatever you are doing to something else. How freeing to escape demands to sit in groups in classes or craft groups or social tea parties and the like when it is all overwhelming and difficult to deal with.

I started this blog hoping to help older people find and recognize themselves if they are autistic. My own personal discovery of my autism has led to final understanding of so much emotional pain, so many fears and anxieties which developed because I did not understand I had autism, and how it affected everything in my life. 65 years of emotional pain, deep anxiety and depression.

Pain has for the most part dissipated now that I understand what happened, and how . I will always wonder what might have been, but of course that is all speculation. Reality is where i spend most of my time, not fantasy.

Perhaps you have somebody you care about, even care for in a medical situation, nursing home, home care, or maybe it is the odd duck in church or a co worker at your place of business. We are in all walks of life from the greatest to the smallest. What a relief to finally know and understand, and to learn that you are not alone, that there are others like you, and for those in care- that people caring for you will try to make your struggles a little less severe, help keep you from anxiety and depression, and to feel finally, understood.