Autism Anger

Shhhhhhh don’t talk about that!!!!!

Autism has a few “sore spots” that seem to be avoided as topics for discussion in the forums I participate in. When somebody does open up, there is a flood of responses, seemingly relief in finding that individuals are not alone in their struggles. I am talking about emotional regulation struggles this time.
Autism and anger, autism and emotional breakdowns due to anxiety, fears, frustration, and inability to cope displayed as meltdowns, shutdowns, violence, tantrums, and outbursts.
We all understand this happens frequently to many of us. But we are ashamed or afraid to talk about it.

Autism is all about our neurology. Many of the ways we experience the world are not the same for us as “neurotypical” or average, “normal” or non-autistic people. Struggles with emotional regulation are definitely not limited to autistic people, we see examples everywhere of people behaving with one or another form of problems with emotional regulation.

Emotions and responses to those emotions are things we generally learn about when we are very small (people in general).
We are taught to recognize our emotions and how to deal with them in socially acceptable ways, usually before we leave home for school days.
Learning to recognize emotions can be helped by explanations given through instruction person to person, videos, books, and role playing, role modeling and other ways.
Learning to recognize emotions and learning ways to express those emotions in healthy and socially acceptable ways takes practice. The good news is that for the most part, these are skills that can benefit from a coach or teacher, a therapist or a counselor.

Sorting and learning to recognize one’s emotions and how to deal with them in healthy ways is part of the sensory system ( remember I said emotions had a neurological basis?) called interoception.

Interoception used to be considered part of the proprioceptive group of neurology but more recently has been removed to its own special category.

Interoception has to do with what you feel physically inside you. It is the sense which tells you what you are feeling when your body gives you physical clues to your needs and wants. That empty feeling in your middle is telling you that you need to eat. The pressure you feel in your lower regions means you need to use the bathroom. The tenseness of your muscles in your stomach and legs can mean that you are afraid and ready to run. The tenseness of your muscles in your neck, your clenched jaw, your tight fists may mean you are getting ready to fight.

Autism often interferes with our ability to recognize the first physical signs of our emotions… so we end up surprised at our own emotional outbursts and our extreme reactions to emotions we did not recognize we were feeling until they reached crisis proportions. The body experiences emotions in a physical way and we can learn to recognize the signs.

Many of us have not been aware of or have not learned to notice the physical signs of emotion. Elevated heartbeat? Heavy breathing? Weak pulse, feeling faint, tight muscles in any part or parts of the body? Feeling sick to one’s stomach, clenched fists, gritting teeth or tight muscles in lips, jaws? Smiling, grimacing, frowning, head lowered or thrown back? What we are feeling physically and doing with our bodies is a huge clue to how we are feeling emotionally. Many autistic people might not recognize body language in others, and many might not recognize our own body’s signs as well. We can learn!

In the forum discussions I have participated in and observed, many autistic adults have remembered that as children they decided emotions were not useful and made deliberate choices to disregard them or to hide them. This seems generally to have been “early on” in the nursery or as a very small child. We can learn to recognize and make use of our emotions, but it does not come naturally to may of us. It is one more thing we might need help with to sort it out. Especially this might be true in older people who are set in their ways and less likely to realize or recognize alternatives.

It is never too late to learn about interoception and how to recognize our building needs and emotions before we reach the bursting point.

Occupational therapists might be able to help, and there are many anger management classes, biofeedback specialists and therapists who specialize in behavioral difficulties. There is much printed and online regarding how to recognize emotions early inside us and how to use that “early warning system” when we recognize it in order to work with our emotions in healthy ways instead of finding ourselves in a huge and surprising/ distressing/ destructive/embarrassing/ blow up situation.

If you struggle with overwhelming emotions of any sort, I want to encourage you that this can be changed, and new ways can be learned to recognize our emotions, to direct and control them into healthier behavior in distressing situations. We can learn to recognize and use our interoception skills as an ‘early warning system’ to detect and divert our physical reactions to emotional situations and make better choices in how to express ourselves or to deal with those emotions before we are overwhelmed and helpless in still another emotional blowout.

If this is an area of distress for you, please be encouraged, it is something that can be helped.
We can learn new ways, sometimes we need to reach out to others who can help us sort it all out.
Don’t be embarrassed or ashamed to take action. Those folks are there because they want to help and they want us to live better lives. There is no shame in asking to learn new skills. And the benefits are beyond measure in terms of the quality of your life and your relationships to others as you move forward.


Adult children of Autistic Parents

Did you know ?

When I discovered my own autism, I discovered my mother, too, was autistic.

My mother passed away without knowing of her autism. But when I learned of my own,
I quickly recognized autistic traits in my mother’s inexplicable and incomprehensible view of the world.

I recognized her struggles, her personality quirks, her odd behaviors, her anxiety to please others and to impress them. I began to understand a lot of the “why” questions from my youth.

Diagnosis of my autism, for me was the key to living a healthy and fulfilled life. Lack of information about my autism and my mother’s kept me in a world of “should” and “ought”, a world where my failure to function as expected was the main feature and always behind it my self questioning doubts and self punishment, self hate, why could I not succeed where others had? Why was I such a miserable failure at life where most other people seem to do so much better?

Our mother had very rigid ideas of the rules of life. Everything in her life centered around becoming a socialite. Her home, her family, her clothing, the things she did all were directed toward her idea of what “upper class” people should be. She wanted desperately to be rich and famous, glamorous, idolized and admired. She lived a life of frustration and no doubt also saw herself as a failure if she ever gave herself over to introspection, but she never once admitted to having a personal flaw, that I can recall. ( and remember my perception was definitely skewed by my own fears anxieties and autistic lack of insights) Why couldn’t she achieve a social life? She never knew.


Everything in our mother’s life was moderated by “what will the neighbors think?”
You must understand, my perceptions are autistic perceptions and I had very little understanding of any of the others of my family, their motivations, their feelings, their struggles. I was busy being overwhelmed with my own, attempting to avoid physical and emotional punishments and constant criticism and scoldings, I was overwhelmed with every day survival, trying to please and most of all appease others in our family (as well as anybody I had contact outside the family) and had only my autistic mother’s perceptions to guide me and explain my world to to me. I stopped asking for her help and insights around 3rd grade (8 years old?) when I realized the futility of that, and recognized the fact that she was not interested in hearing about any of my problems or struggles. ( She had plenty of her own and her autism kept her from seeing mine) I understand that now.
I displeased my mother so often because she saw her own autism in me and wanted to correct it, punish it, wipe it out. My autistic failures reminded her too much of her own weaknesses, flaws and struggles and infuriated her because I seemingly willfully continued to annoy her by my struggles, with her seeing these as deliberate disobedience and lack of compliance through resistance of will rather than lack of understanding what she wanted of me at any time.
Her hidden and not really understood message to me was “don’t be autistic”… yeah, that was it.

No wonder I had a miserable childhood! At least I can make sense of it now.

I got my ideas of life’s ” should’s” and almost everything else in life really wrong! Nobody’s fault!!! Nobody knew about autism, either mine or my mother’s, nor that of anybody else in or out of the family in those days.

I was told by my mother’s sister and their own mother (my grandmother) that my mom was “simple”.

In truth, she was extremely dyslexic and probably had other struggles with sensory processing. She could barely read and write, had echolalia, used music she learned as a child to express her feelings ( singing some songs over and over and over for all of her life in certain situations).

I think of my own inability to visualize (aphantasia) and my fascination for taking photographs of things I see, and want to remember. I have thousands of images stored in my computer so that I can go back and look at the images which I can’t visualize or remember in a visual way by picturing it in my mind’s eye.

I was shocked ( oh no, I have become my mother!!), when I realized in remembering that our mother was obsessed with taking photographs and that she had amassed a huge collection of printed images, almost all of her family, taken over the course of the years.
Our mother’s photo obsession drove all of her kids and her spouse crazy. Every activity should have a photo, every event needed to stop while she posed us and took repeated photos. She was always excited to look at the photos when they returned from being developed.
I suspect her obsession with photo taking was because she could not visualize in her mind, either. In those days photo taking was very expensive, both to purchase the films and to have the photos developed. I remember my father complaining about the expense!
On top of our mother’s likely aphantasia, add that she was not able to read much at all because of her dyslexia. She struggled to write due to the dyslexia as well.
Her struggles were far worse than mine… I could read and write and had a gift for words, and I am amazed that she accomplished all that she did without these things.
Mother’s hearing processing and her visual processing may have been struggles for her as well, but I will never know. I know she loved movies and television, loved listening to soap operas on the radio, and enjoyed popular music from her childhood onward.

Now that I understand my mother’s autism and have a much better idea of how it must have affected her, I can only admire that she managed to raise 4 children, kept us clothed, washed and fed, kept the house clean and that we all survived and became independent citizens functioning in society.

I grew up in the 50’s and the 60’s and in those days, all failings of children were blamed on poor parenting.

I blamed my mother too, and for some things like her deliberate cruelty, I still do blame and resent her treatment of me. Deliberately causing pain is never appropriate, physically or emotionally.

I can not excuse that part of her behavior. But I can better comprehend it. She had so very few tools available for overcoming her own struggles. She had no insights, as I have been blessed to obtain through today’s knowledge of autism and of my own diagnosis. She had to struggle all her life and never knew about her own autism. She never had the opportunity to gain insights and self understanding, to see her world differently, to make adaptations that might have allowed her to grow and thrive. She never knew.
Today, knowing my own autism and knowing that she died never having the blessing of self understanding needed to adjust her life and her struggles, I am better able to forgive so many of the struggles of my own life which I had been taught to blame squarely on the parenting I had been given. And I can finally forgive her as well.
We survived, how we did it, I am not sure.

Knowing about the autism in our family has been a key to my understanding of my childhood, my youth, my struggles all my life.
Knowing about autism in my mother and possibly in other family members has allowed me to understand all those painful “why’ questions and helped in the healing.

Did you know????

Now I know of my own autism, I wonder how I did as a parent?
Nobody knew about my own autism all the time my kids were growing up.
I did not learn about my own autism until my offspring were born, and grew up to have homes of their own.
Nobody knew back then.
Diagnosis is life changing.

Shoulds

ought, supposed to, and other unhelpful or damaging words and phrases

This is about undefined expectations and non specific social pressure, guilt, shaming, and other undefined vague or incomprehensible negative communication.


Should sit up by age 6 months
Should walk by age 18 months
Should talk by age 24 months

Expectations for performance in our lives are set at a very early age. Before we go to day care we should be potty trained, before we go to school we should be able to dress ourselves, tie our own shoes, wash our hands and brush our teeth.

In school we should be able to sit still, listen to and obey the teacher, should be performing according to the parameters set in the guidelines for our average grade levels.

And so it goes. By the time we reach adulthood we have heard that word “should” at least a thousand different ways in a thousand different contexts allied with performance and expectations.

Somewhere in that, ” should “also is used to shame.
You should know that.
You should have….( done something)!
You should not ( have done something else)!.

“Should” becomes condemnation and guilt causing.
Added are variations of should: “ought to”, and “supposed to”.
You ought to know what you did wrong!
You ought to be able to figure it out!
You are supposed to (be like this, react like this, think like this).

I spent years in emotional chaos and despair over these words and this particular form of communication from others.
How was I supposed to know the things they said I “should”?
They never explained or defined their complaints or their criticisms so that I could avoid doing whatever it was they did not like me to do from then on.
I got responses such as “that was so mean” or “you hurt my feelings on purpose” or “You know very well what you did!”.
I could not understand how I was bad, wrong, thoughtless, improper, incorrect, etc without specific explanations of how I had offended or made mistakes that were so frequently interpreted as deliberate actions meant to cause emotional pain, to show defiance, or to deliberately thwart or frustrate others.

I was told constantly “you should know by now”, ” I should not have to tell you to” , “You ought to be able to figure it out”, and “you should not need help with that” .

I did not know, you did have to tell me, I was not able to figure it out on my own.
I was lost, confused, frightened and felt terrible because it was obviously “all my fault” but I did not understand how that could be so. I had absolutely no idea of how this had happened. I had absolutely no idea of what I could do to make sure it never happened again, but oh how I wanted to fix that!!!!

Add to this “you’re not supposed to be like that” ” You’re supposed to say (this)” or “You are supposed to ( do this)”.
I was often told I was supposed to want certain things, supposed to feel certain ways, supposed to like certain things, or to react in certain ways. I tried so hard to comply.

The world was just full of rules I tried so desperately to understand.
I did not know until years and years later that the words “should, ought, and supposed to” were subjective and dependent on the expectations of the person speaking rather than rules written in some unknown and hidden social code book to which I was for some reason not allowed access.

I did not know that the same “should”, “ought” , “supposed to” did not apply to everybody equally in any interaction. Nobody told me. I did not have a clue!

I wish somebody would have explained.

If you are the parent of a child with autism, it might be helpful to omit those few words and provide complete and detailed explanations of expectations and how they are to be met.
Adults with any kind of interactions or relationships to adult autistic persons, for these folks, I suggest the same.

Disappointing behavior, words spoken, actions taken, and expectations not met can be helped most by explicit and detailed explanations about why a certain action is preferred.
Please provide detailed description and explanation about how the expectations can be met in the future.

Your autistic partner in communications, child or adult will be much more likely to understand your expectations than by your telling them “you should know”.

Flat Affect

I missed this one, I think!

I have been trying to learn if there is a link between Parkinsonism’s “mask” and Autism’s frequent reports of flat affect.

Flat affect is simply a lack of expressivity in one’s face and reactions.. the lack of showing emotion in one’s “presentation” to the world. Flat affect is reported as being frequent among autistic people.

I was quite surprised when the Doctor who diagnosed my autism said in the summary report that I “presented with flat affect”. I had always thought I was quite expressive both in my face and body, and in my voice! I certainly feel emotions, and was amazed that these emotions are not clearly visible on my face and in my reactions, etc in interactions with others, etc.

My mother was diagnosed with Parkinson’s while she was in her mid 50’s partly because she appeared to show “the mask” or flat affect that is known to develop with Parkinson’s disease… and knowing of her autism, I am now wondering if the flat affect due to her autism was perhaps attributed instead to Parkinson’s.

Flat affect might be one reason that autistic people are often accused of being cold.. our emotions may not be evident to others because of flat effect… NT people generally are very facially expressive of emotions and looking at one’s face is often a giveaway to one’s thoughts ( one being a person or an individual). When other people can not see our emotions clearly displayed on our faces, it is assumed that we are unfeeling. This is often far from the truth!

If you have been accused of ‘Not caring, being cold, being heartless, unreceptive, detached,” or otherwise unfeeling, yet you know you feel emotions sometimes desperately, perhaps flat affect is present. Did you know? I did not!

Was there LOVE????

Something is missing from the lives of autistic children.

If the insights I am gaining from adult reports of their childhood are any indication.

Growing up I truly believed my family hated me and could not wait to get rid of me,
did not want to hear from me, was not interested in anything I had to say, how I felt,
what I thought. I believed they looked for reasons to try to hurt me, to shame me, to humiliate me, to cause me emotional pain and to punish me. I learned to be wary, defensive, self protective, afraid and anxious.

I still remember vividly almost every incident in which I was treated this way . To be fair, my perceptions might have been skewed due to my very poor visual and audio processing, which did not allow me to experience anything in “real time”. I was not equipped to understand a thing I saw or heard (human interactions face to face or in any person to person settings such as family interactions, school classrooms and free time association with others, watching tv, movies, or today watching you tube or other online visual and audio presentations). Nobody knew or understood about autism back then. I do understand (now) how it happened.

I remember family sometimes said they loved me, but in day to day experiences it was very difficult to believe. I remember my sister asking me if I believed I was loved, and I replied that I believed my mother when she said she loved us. That’s what she said, one did not doubt mother!
But I never felt loved. I never understood the concept of love. Nobody ever explained it. I could not see it, so I could not feel it. Looking back, I can see signs ( now ) of concern and caring, but at the time of my family and youth experiences growing up, I did not see or understand. Nothing in my childhood was ever explained. I was simply ‘told’ and had to accept whatever i was told, and accept it immediately, whether it was good or bad.

I rely on my autistic brothers and sisters on several forums to give me insight and understanding of how my autistic life experiences compare with others’.
I rely on insights they provide to make adaptations or adjustments in the way I see my world. They explain much that has remained hidden to me all these years. I asked on a couple of the larger forums (over a thousand members in each) this question.

“When you were growing up , did you feel loved?”

Hundreds of answers poured in over a period of days. If the answers I got were any insight, the majority (approximately 19 out of 20) reported that they did not feel loved. I was not alone!
I had suspected as much due to the large number of posts with memories of difficult struggles and cruelty reported of childhoods past.
In other conversations, Autistic parents swear they will not intentionally make their child feel unloved, uncared for, ignored, or cast aside, isolated or as though they were being discarded.
I believe it is human nature for parents to want life to be better for their children than the childhood they experienced. (but I don’t know many people who had happy childhoods).

I then asked a follow up question and asked the people who gave me insights to answer another question. “if you grew up unloved, what could have changed to make you feel loved?” and
” If you grew up feeling loved, what do you think made you believe you were loved”?

Overwhelmingly, the answers to this question were so moving. First of all, many of us needed to feel safe. Many of us remembered frequent emotional or physical punishments, criticisms, pointing out of weaknesses and scoldings, never feeling free to be themselves, feeling the anger, disgust, contempt and revulsion of their family members and just waiting for the next round of attacks on their bodes and or their psychological/emotional existence.

Most said they wished they had been listened to, encouraged, had explanations or discussions about so many aspects of life, had been approved of, had been included in family activities, had been at least sometimes the focus of loving and kind attention, instead of being ignored, criticized, cast aside or isolated.
One point brought up over and over, was being kept from family outings, family events, family activities that other siblings were included in.
I remember being sent to my grandparents, who did make me feel loved and worthy and who encouraged me, engaged me, and were kind to me.
I was in about 4th grade when I finally realized that the weekends I spent at my grandparents were weekends that family outings without me happened. I got full reports from the sister next younger, about where they went and what fun it all was. When I protested, and asked whi I could not have gone too, I was told “you had your special time with grandma and grandpa”.

The weekends when my siblings went to visit grandma and grandpa, the rest of us stayed home.

Many others had similar memories. Not welcome in my own family circle to do the fun things they did. What message does that send?


I think I really did not understood about all the facets of love and all its implications or the ways it is shown. I know I tried to make my own children loved, and as young adults, they report I succeeded in that. Somehow that is so precious to me. Of all the things I longed for as a child, to feel I was loved was at the top of the list. I never felt I succeeded with my parents or my siblings. Love may have been present but I did not experience it. I did not believe it. How much of my experience and its interpretation was the truth, and how much was my processing struggles and my autism keeping me from understanding???

I have struggled, as many autistic folks do, to sort my emotions and understand them.

Not until my learning about my own autism, and examining my previous experiences through the understanding of how autism has affected everything in my life did I have more than crumbs of understanding taken from clues in my early life, and most of it I “got wrong” or was incompletely informed. It is a lot to digest, it is a lot to understand. I am still working on sorting it out.

I hope that autistic children today are getting explanations about everything, the nature of things that are not black and white cut and dried in life, things like emotions- love, hate, how they can happen in a relationship at the same time and what it means. How emotions work, how to recognize them, how to understand other peoples’ emotions and what to do about it all.

Parents of autistic children, please keep explaining everything… what, how, why, when…. it is so important your child’s understanding of the world, their place in it, and to their sense of self and their perception of life as it unfolds around them. Don’t assume they understand what seems evident to you. I am fully intelligent, and I can learn, but sometimes I need to have the nature of things explained. In the case of those with auditory and or visual processing struggles, a lot that is evident to neurotypical people can be missed or misinterpreted.

Take time, explain everything. Your children will thank you some day.

After diagnosis

What next?




What happens when older adults are diagnosed with autism? Are there supports or therapies

which can explain this surprising diagnosis and help us understand our new autistic selves?

How will life be different? What do we need to help ourselves transition to this new definition

of ourselves?

Recent discussions in some forums I check out each morning have given some great insights

and not all of them are good.


On the question asking how knowing our autistic diagnosis has helped us, the great majority responded by saying it has not!

I must say this surprised me, considering how much better I feel I am doing now I know myself better and now I better understand my struggles.
For the majority giving answers, simply understanding how one struggles and why has not been enough. Those struggles still exist, even though they have been given a name (autism).

Most respondents said they needed more help. The great majority wished for available therapy to help them adjust to the new information and understand how to cope with the changes this brings.

Many said they could not break down the information of knowing their struggles to understand how to make adjustments and accommodations for themselves; they sought insights but struggled to find those new coping mechanisms on their own.

Many thought they could use another person to help in day- to-day functioning, actions requiring “executive functioning” struggles were the ones mostly named: household tasks such as cleaning and laundry, self care including bathing and other hygiene issues, food preparation and shopping, bill payments and financial struggles were all mentioned.

Finding affordable housing, and transportation issues were also discussed, as well as seeking persons to advocate for them in many transactions, medical, legal, etc. and for helping with filling forms, making applications, finding the services needed. Many services may be available, but finding out about them and applying for them seems insurmountable in difficulty. Even learning of local connections who might help is difficult at best.

Many wanted training in job skills, specialized education, and help finding jobs, perhaps getting accommodations for some sensory or other issues they were dealing with.

Some of these services can be provided through the state level insurance mandates in the United States that now say adult diagnosis and therapies/treatments must be covered (medicare too).
Others may be accessible without the word “autism” ever being raised. Locations where individual help is available vary considerably from place to place, so there is no general outline to tell us which steps to take to get what sort of help.
Getting ourselves connected to the networks used by other groups is complicated and for those who struggle with social issues, can be overwhelming/terrifying.

The forums I attend are international. In other countries there may be nothing at all to address autism . In some there may be agencies where one applies first. Here in the USA we ( autistic elders) are lost and on our own for the most part. Raising awareness is the first step.