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 and manners

Rude, thoughtless, cold, selfish, uncaring, intrusive, tactless, blundering,

lacking insight, impulsive, crude, socially unacceptable, unkind, mean, pushy,

can you add to this list of words?
Have they been used to describe you?
These and many more have been used to describe me over the years. I was hurt, shocked, and offended when told I was all of these things in various incidents from my past. I had a hard time believing this was so, it was never my intent! Why so angry? What had I done? From my point of view everybody was being hysterical over things that made no sense to me. I was quite defensive after years of these reactions to me. What in the world was wrong with all these people????
Not one time did I understand what I had said or done to evoke such angry and hurt responses. Nobody explained. I was told “you know what you did”, “you should know” or other angry responses about how hateful I was being, when I tried to understand. I was indignant! How did they get such hurt feelings from my speaking what I thought was the truth?

I had no idea that speaking whatever I thought could create chaos and heartbreak! I had no idea that what I was saying might bruise egos or hurt feelings or make others angry. When those things inevitably happened, nobody explained. I never understood my part in their distress.
I spent most of my life feeling abused and unfairly treated, not knowing how my autism and lack of insight and understanding had contributed to these incidents. It was not until I learned about my autism around age 65 that I began to see how my honesty, my outspokenness, my directness, and my penchant for stating what was obvious to me could get me into so much trouble and so deeply offend those around me. The intent was never to hurt or dismay, offend or otherwise cause bad feelings. I thought I was joining in information sharing and discussing insights and facts as I saw them. OH boy!

If all of the people I had offended had explained to me how my words or acts or lack of action led to making them feel bad, I could have learned about tact, discretion, the value of holding one’s tongue, and so much more. When I finally began to realize how my own speech and actions in many of these situations had led to such terrible misunderstandings, anger, hurt, distress, etc. I was horrified.
I had done it all in autistic oblivion and not with the direct intent to cause pain. How could I have been so blind?

Autism does not give us insight, instead it gives us the ability to observe superficial facts, often in great detail which may be missed by others…..but we often do not understand that we should not speak about those things.
We must be taught how to look for clues that we are making others uncomfortable, we must be taught basic insights into manners and the reasons we must practice good manners.
We must learn so much that is obvious to others who do not look at life through prisms of autism. Much that is clear with intuition by NT folk must be explained to be understood from the autistic side of life.

Once again, I wish that as a child growing up there had been somebody I could go to with questions, somebody I could ask these things of.
I wish that I had understood so much that was hidden and assumed that I “should know” but never had a clue because autism did not allow me to see what was so obvious to others.

One of the best things parents can do for their autistic kids is to explain everything in detail. Don’t assume they can put meaning on situations that are obvious to you.

You can use reading, tv, movies, etc to explain awkward situations or feelings that are being displayed in the stories.
Explain in details, not only what is happening, but why the characters responded the way they did. I think it would have been so helpful to have this understanding throughout my life. I simply had no clues to understanding the significance of so many things.

I believe body language can be learned, I studied long and hard to learn body language of dogs and horses and cats and studied hard to understand detailed nuances of social structure in their natural lives. I am very good at that!
But I never gave a thought to the fact that I could learn the same of human behavior, motivations, social structure, etc. Nope, I had to be taught!
Knowing now that I am autistic, I can make up for lost time and have begun to learn more about human thinking and interactions.
I want to stress this is not intuitive at all, this social behavior, but is learned through teaching myself the body language, thought patterns, social patterns, etc of humans.
It is not intuitive, it is not obvious to me at all, but I know it can be learned and put into practice.
I hope by doing this I can avoid many of the social blunders from my first 66 years… I urge you ( as a newly diagnosed autistic elder) to think about whether you too might need a social enhancement/ enrichment program to help you understand so much of your painful past and to give yourself a more socially successful future.
If you have contact with autistic youngsters, there will be much to be gained by deep explanation about manners, social customs, reading body language, expectations that are there but might not be obvious to direct thinkers… we can definitely learn, but first we have to figure out ‘what we don’t know’.
That part comes when we get a diagnosis of autism. Can you see why it is so important to reach the hidden autistic people among us and to give them the tools they need to finally understand themselves and the world they have long struggled in alone and not knowing?

Autism and social struggles

Social impairment of interaction and communication struggles are the heart of autism. It is becoming evident that our sensory problems may contribute to the social struggles in their own way.

Why can’t I make friends?
I hate parties and large groups!
I hate malls and shopping!
Why can’t I get a date, find a significant other?
Why do I keep being isolated, rejected, bullied?
I need to be alone!
It drives me crazy when ………..

The on line forums I attend are fairly evenly split in regard discussions about social struggles with family, friends, co workers, others in shops, medical care and supportive work, jobs, ( people in other words, and all things social), and descriptions of sensory issues that plague us.

It has been interesting to see how one struggle might feed into the other.
We may not like fashions that are currently popular because of sensory issues such as the way they feel in texture, the way they fit (too tight, too loose, too restrictive of motion, too short or long, or touching parts of the body which we are sensitive to) We may hate the tags or the odor of or sounds of when wearing the fabric.
So we may dress for comfort, and we look “odd” to much of society.

We might hate using deodorant because of the feel or smell, tooth brushing the same, sensory issues surrounding bathing, issues of washing hair or feet, nail clipping, etc….. all may add up to ‘socially unacceptable” appearance or smelly bodies.

We may have issues of proprioception or interoception leading to odd gait, strange voice modulation (too loud, too soft, inappropriately expressive of emotion or lacking emotion for flat affect etc). Struggles may also keep us from being good judges of how close to stand or knowing when or if we are intruding into others’ personal space.

We can be socially inappropriate, not recognizing when what we say may be too much personal information or offensive to comment on in others, not recognizing that the same manners used at the gym may not be appropriate in church, etc.

We may not recognize that people we are interacting with are bored, angry, etc.

We may blurt out opinions or advice where none have been sought, unknowingly offending those in our presence.

We may tend to use direct, blunt statements due to black and white thinking.

We might tend to monopolize conversations and never realize that others are tired of listening to our discussion of our favorite subjects.

Of course this does not apply to all autistic people. All or none may apply to any of us.

Many autistic people/people with autism have learned to wear “the mask” successfully, to avoid all those pitfalls, and to recognize most of the social requirements society asks of us to “fit in”, at the cost of emotional and physical/sensory overload and resulting exhaustion or breakdowns.

We may be very set in our ways and refuse to change because our ways, rituals, schedules, forms of speech, our stimming behaviors, etc are what comfort us and give us a feeling of security in an otherwise overwhelming and distressing world.

We seek silence and remove ourselves from all things social to help ourselves recover from too much sensory input and too many demands.

But we are human and long for interactions with others. Many long for romantic relationships or physical contact.

My own social life depends primarily on online autism based communities.
It is so uplifting to see our online communities interact with each other, encourage each other, and offer information or ideas that have worked in similar situations.

Those who say autistic people do not feel empathy or sympathy are simply wrong.

The kindness and encouragement that is shown to our own autistic brothers and sisters/kin on multiple forums proves that the “unfeeling autistic” idea is a misconception over and over.

I look forward to a day of deeper understanding of autism and better insights into diagnosis and compassion for all of the ways we struggle.
Mean time, my forum families provide insights and support from their own life experiences in so many ways.
I have learned from generous hearts, fascinating minds, and wonderful compassionate sharing of insights of so many in online autism forums.
It does not matter how we present ourselves socially there, we are accepted and encouraged in a way that might not be possible in group or individual face to face encounters. I find answers to many of my personal struggles there, and learn new ways to deal with my autism’s most vexing characteristics.
Internet forums are one of today’s modern miracles for many of us.