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.


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!

Double Empathy

whose point of view measures autistic responses?


This is extremely important! https://wordpress.com/read/feeds/92352784/posts/2592725199

Quincy describes the problem very clearly.

Countless studies have been done over the years supposedly measuring autistic subjects responses to emotional situations, to situations regarding “theory of mind” and to measuring empathy and the like. How do we measure emotional response? Can it be done scientifically? Some of the problems regarding the design of “tests” and “studies” of autism are subjective to the views of the testers.
Autistic adults on the “elder autism” forums I attend discuss tests about ‘cold autism’. ‘Lack of insight’ , “Lack of empathy” knowing these tests are completely inaccurate and scoffing at the claims made. Nothing about us without us… time for science to take a second look at some shoddy and poorly constructed “tests” of autistic subjects.

My personal worst gripe is the test that supposedly measures emotions viewed in photographs of eyes. The photographs used in the 2 tests I have viewed use actors and people “pretending” the emotions that are being portrayed. The human “pretending” to feel certain ways is not likely to express themselves exactly as a person who actually feels the emotions. There is a social bias in this test which is outrageous, since cultural traditions and training also have a part in human facial expressions.

The list would be a mile long if we named all the false conclusions “scientists” have presented as truth and reality. Please read and understand what is presented here.
I am Grateful to Quincy for permission to share. His insights and eloquence here are unparalleled. Read it all!

There is an old joke about a scientist who cuts off a frog’s legs, one by one, saying “jump frog jump” and each time the frog jumps with 3, 2, 1 leg, he measures the distance and records it. Then he cuts off the 4th leg and says “jump frog jump”. The frog does not jump. Scientist writes in his little record book “frog with no legs can’t hear”. Think about it.