Grief and Autism

Defining grief and discussing feelings of loss and sadness surrounding Autism

This is dangerous ground. Issues surrounding Autism are sometimes very political and raise great emotional reactions. Ideas about grief are among the most controversial, discussed, ranted over, rage-raising and distressing issues on many autistic forums and blogs today. I am about to try to sort some of the controversy, anger, shaming, blaming, and distress. Instead I might inadvertently add to it, who knows?

I spent hours reading definitions of grief preparatory to writing this.
Grief can be explained as a normal or natural reaction to loss, deep sorrow in reaction to change of any sort, the usual being over loss of a relationship due to death. There are also aspects of grief in loss of expected outcomes or change of expectations or plans .

Grief is not simply feelings of loss, but also a ground for conflicting feelings of guilt, anger,sadness, relief, or release. We can feel sorrow over the loss of a parent and still feel relief over their release from suffering, from the difficult behavior or painful relationship, and feel guilt for feeling the accompanying sense of freedom. All of that is part of grief, and there is often much more.

In natural cycles of grief there can be stages of denial, anger, bargaining, depression and sadness, and acceptance. These can happen in stages, and can be repeated over and over in any order, sometimes simultaneously, other times remaining in one stage for long periods of time.

Many people may need support and counseling or therapy to help with grief. It is not uncommon for adaptation to be incomplete or adjustments to be unhealthy in our search for consolation , solace, and peace over our place in the midst of our losses.

The thing that brought grief to my attention was the third reading of Tony Attwood’s excellent book on autism. “The Complete Guide to Asperger’s Syndrome.”

I read it through the first time when I suspected my autism but was not sure. I thought much of it was written only about children and did not see how much of it applied to me. Then I read it again and recognized so many traits and experiences of my own from my childhood (looking at it and comparing it to my younger self). The entire book read from the aspects of my own childhood was filled with “aha” moments.
I was amazed and so interested… it explained almost everything about my early life. This was it!

The third time I read the book, something very strange happened. As I read those descriptions of childhood struggles I had the urge to cry uncontrollably. I felt sadness and loss and immeasurable helplessness and confusion. I was re-living my childhood emotions. I felt the feelings I had felt in all of those impossible situations from my childhood, the guilt, the anger, the sorrow, overwhelming sorrow and sadness all wrapped together in one experience, each situation the author described bringing forth a flow of memories of similar situations from my childhood, adolescence, and teen years.
The most predominant of these was the deep sorrow I had for myself and my struggles.
I experienced this feeling for most of my life. Feeling nobody understood, nobody cared, I was lost and helpless, feeling I was the cause of everybody else’s troubles. I remember being told over and over to stop feeling sorry for myself. I remember wailing ” I don’t know how” .

I can remember so many tears and so much distress. I remember begging for therapy, a counselor, for somebody to help, and being told repeatedly that “there is nothing wrong with you”.
I just needed to shape up, to get with the program, to shake it off, pull myself together and TRY..to do right, to be good, and to stop being selfish and bad. I never understood how I was supposed to do these things, but I was to do them by myself by willpower and strength of character. The feeling of futility was immense.

OK, back to grief. I believe I was trapped in grief and despair. I knew I needed help and comfort and that I was not ever ever going to get. I had a need for understanding and compassion for the struggles nobody seemed to understand, and took for deliberate willfulness and acts of evil. I needed explanations, insights, support and directions, I needed details of almost everything explained in depth . I knew I was not going to get them in my home situation.
I came to the stage of acceptance eventually, but the underlying sadness was there throughout most of my childhood and young adulthood. I spent my early day to day life not only in fear and dread of any interaction or mistake I might make, but also in grieving for the things I was pretty sure others had somehow obtained but that were forever out of reach for me.

Grief for loss of loved ones is called bereavement. It is a reaction to losing through death, divorce, separation, life changing disability or other circumstances. I have always processed this sort of grief more easily because the “why” factor is usually evident. The loved one died, had health changes, was no longer in love , moved far away, all concrete facts that don’t have that “why” factor.

Now we come to an opinion that is not popular with many autism groups. There is a huge backlash against parents of autistic offspring who lament online that their children are suffering and wish that they were not autistic.
I find the anger of some autistic people may be misplaced because the distress the parents are showing is at their own helplessness to help their struggling children, some of whom are very heavily afflicted with many of the worst features of autism.
I think it is natural grief that is showing, however poorly worded in forums or blogs. The parents are truly grieving because they see all sorts of things that they have been helpless to prevent and to aid.
There is a loss of expectations for a normal childhood and adulthood, a loss of dreams for a bright future, a loss of the idea of “what it was supposed to be”.
I understand the angry autistics’ reaction to the spoken wishes of so many parents saying they wish the child had not been born, that they wish the child was not autistic, etc.
In many cases such children are killed by their parents. In many cases children are abused by their parents.
In times of the past and today, many wish for elimination of pregnancy of a potentially
” damaged ” child , society of today deeming it is OK to select which pregnancy can be terminated , the demand is there for tests for autism as there is for down’s syndrome and other genetic conditions. To be an autistic child and hear that you are unwanted is probably a very common state. I heard it too. I understand the reaction against such statements. I understand the reaction against being told we are unwanted.
I understand the pain it causes in our own autistic hearts and I suggest that the anger we feel is grieving of our own over things that we have missed, have lost, have never known. I have no answers. Grief is part of the human condition and will be experienced by the vast majority of humans today. Grief has been the hardest to sort and understand of all the almost constant emotions of my life. Now with my new understanding of my own autism I am making progress toward sorting it out.
I have no answers but find it difficult to focus all of my rage on the parents in these support groups who are feeling loss of ability to help their children, who feel grief at the things they want their children to be able to experience or goals they will perhaps never attain. I don’t think it is realistic to blame the behavior of a few parents on all parents of autistic children, any more than we all recognize how unfair it is to blame ourselves for our autistic struggles, or the behavior of a few autistic people .
I may write more about grief and autism as I continue to sort and to understand. Mean time, I want to make a call for unity. Autism needs different perspectives of diverse people to continue to help us all understand the many ways we are affected, our needs, our self understanding, our struggles and our triumphs. I hope we can refrain from tearing other grieving people apart in our quest for “justice”, “fairness”, etc.
As human beings we are all in this together. Let kindness and not anger and retribution win this one.


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”.