Autistic and Grieving: Robot or Human?

Back story: January 7,2019

On December 26,2018, I had rolled out of bed after sleeping in late being that I was on holiday break for two weeks. That late morning, I made a late breakfast before jumping into the shower prior to heading out for a little day after Christmas R&R in the Midtown Atlanta area. The weather was a balmy 57 degree and I was not only going to hit the after Christmas sales but also grab lunch and shoot a few videos of people using the time skating rink for my vlogs. The day was going to be perfect and my evening would be just as relaxing. As I got off three in the early afternoon though, my phone was ringing and I answered. It was a call from my Aunt Lois’ neighbor.

Mark explained to me that the police and several of her friends were outside of her house trying to find a way in after not being able to get ahold of her for three days and finding her car tucked away into her garage turned carport. Not long after, the fire department arrived and climbed through her windows and took off a few of the locks. Once inside, there lay Lois barely alive and helpless several days alone after suffering a massive stroke and damage from fluids in her brain or so the MRI read. According to Mark, the paramedics said that she was septic, which means that she had massive amounts of poison in her blood. He also said that she was found with one eye open and the other closed while having drool in her mouth. Once in the hospital, Lois was kept alive on a ventilator or so I read on Facebook. She remained in the hospital for 10 days in a coma in hospice care post being taken off life support. Yet, she briefly came out of her coma on January 3rd where she had attempted to sip water. As a result, Lois was released from the hospital while we all believed that she would receive around the clock care in her home. In the meantime, her brother, Uncle Dennis, her brother began their trek down to Atlanta yesterday so he could help settle her new living arrangements. Sadly, Lois Ann Ryan slipped back into a coma in her home where she did this morning.

10 days, before her death and after Lois entered hospice care, a friend encouraged me to go see her and say goodbye to her despite a falling out that happened in late 2017. Upon entering her room, I signed in and grabbed my visitor badge before spending a half an hour with Lois she slept in a stable condition. At that point, they had already taken her off the ventilator and any other life supports. All the while, she barely looked recognizable. This was other her beautifully styled strawberry blond short hair and her hospital gown that very much resembled several t-shirts with little designs on that. Meanwhile, she slept in an elevated position with her head tilted down at an angle while I smelled the hint of urine and noting it in an evacuation bag. At this time, I asked for her forgiveness and told her why I cut her from my life for a while telling her I’d miss her. All the while, I saw her eyebrows rise next to seeing rapid eye movement or REM. Next, I recited Hebrew blessings and prayers from the Mourners Kaddish and the Aaronic blessings all before kissing her on the forehead and walking out backward. Though I cried at my friend’s house on the day that I received the news, I could not while visiting her one last time. Rather, seeing her in this state made me feel nauseated and I wanted to get out of there as soon as possible, though I knew I had to say goodbye. As sad as it was to see her in this that, I knew this wasn’t what she wanted. In fact, she had told me years earlier that if anything like this were to happen, she had a power of attorney on hand who she had long since instructed to take her off life support.

Aunt Lois: December 2005 at Disney World

However, the real question that I am asking and answering here is “Can an autistic grieve?” My answer to that question is “Yes absolutely.” Like the rest of society, autistics are human beings like a neurotypical or an allistic, we have feelings just like everyone else. As one who is on the spectrum myself, I have faced many different types of grieve from bereavement to the loss of friendships. What I have learned from my own experiences is that each is very different.

Examples

In the case of losing a friend, who decided we were not compatible, I found that I had gone through 4 of the 5 stages of grief. At the moment, I am on the tail end of being angry that the relationship ended after attempting to bargain with my friend. In this particular case, I had attempted to meet with my former friend in not only getting closer but also with the hope of rekindling the flame of our relationship. It was only when she said some very mean and hurtful things by attempting to pin her deep dislike towards me on her husband and admit that our friendship was a lie, then the anger set in. What I have found is that the anger has last for nearly 4 years. When she first cut me from her life, I went through a time of shock where I barely noticed that she was gone by keeping busy trying to enjoy my life without her. In the middle of this state, I felt that I had room to be myself and that I didn’t have her problems to weigh me down anymore. I also played the song, “Let it go” over and over again. As time progressed, though, I began to see people, certain objects and dates, my depression was triggered. One such instance was a month later when attending a convention where two situations brought in the depression. In the first, I met a friend at the train station who sent my former friend a private message on social media because he wanted to know why. He also showed me what she had written him back. The second situation was running into another former friend of hers who I had a crush on for many years. Not only was it hard to see him but he snubbed me as well. In fact, I was so depressed that I ended up having to take a break from the convention by going into the pool area and cover myself with a bunch of towels. There I cried while remembering a common lie, “I love you like a sister,” which she often put into cards she gave me. Thereafter, I spent most of 2014 crying about my ex-friend and feeling lonely.

In 2001, my grandfather died of a heart attack and though I cried during the wake and on the ride home post the funeral, I only remember facing one stage. In this case, I only recall spending the entire summer experiencing lots of anger when working at an amusement park. Most people thought it was because I got too stressed out easily but I do believe that it probably stemmed from losing Grandpa John. This came along with the frustration of not being able to get a boyfriend like most of me co-workers next to my co-workers connecting and doing things together but usually leaving me out. This being said, I don’t ever recall facing the 5 stages of grief. Rather, I was too focused on starting my own life and learning how to overcome the societal barriers.

All the same, I have learned that despite the mass amount of resources for autism, from self-feeding to solutions on meltdowns, there are no books or other resources on how an autistic can learn about grieving. Considerably, most resources focus on how a parent should focus on grieving because they have learned their child is autistic which I find disgusting. In any case, I believe there should be countless books written and created for autistics. While some are good at reading, others would benefit from a narrative with lots of visuals that would show that what grief looks like. Other materials should have information on resources on what they can do in regarding grief. Rather, I see more materials talking about what to expect in terms of the death process and what happens when an autistic loses a loved. Thus, we need to change that. In any case, they should not be told how and where to grief because no one ever expects this from a neurotypical. Ever!

One examples

On the other side of things, autistics today are not taken seriously due to the large amounts of misinformation regarding autism. Most who are not properly educated hold small minds. So when a person in the life of an autistic dies, those who don’t understand often get the idea that individual will not be able to understand the concept of a loss or grief. Therefore they will steer them away from the topic of their loved one’s death and focus on things like their favorite movies. Though most would agree they are helping, they are actually doing more harm than good.

All the same, an autistic should be allowed to communicate about the loss of their loved ones and how they are feeling. This should especially be true for those who do not use formal language but rather use letter boards, communication devices and sigh language to talk. Because, it is even harder for an autistic who cannot communicate to let someone know without the use of such devices. Lacking these devices that prevent the communication can bring on more challenging behaviors. I recently learned that having a weaker immune system and tiredness come follow just after the a death. For an autistic, they need to be able to communicate how they are feeling following a loss.

Yet, since grief is not the same for everyone, I would expect that each autistic grieves differently. For example, some might understand the concept of anger, sadness, and acceptance while the other two stages may not make sense to these. Others may look at grief from the form of logic by talking about why their loved ones died and how it happened. Since Lois died last week, I had been doing lots of research on how and why a stroke can be fatal. If I even had a chance, I would like to see what a computer model replicating what her strokes looked like from the inside. Why just before her death and just hearing what she looked like when she was found, I was able to gather the evidence and recognize that she had a stroke. All the same, others will experience grieve by having higher levels of sensory input and anxiety which will prevent them from functioning.

Whatever an autistic grieves, one still have to recognize that one it is grief and even if it does not come in the same way as an NT or an allistic.

Emotionless in Petville

 

When going through the process of purchasing my condo six and a half years ago, I found love in a beautiful red and white four-legged feline named Yeller.   Not only was it because he was ginger feline alone with being half Siamese,  but this little soul was able to capture my own heart.   It was during the last seven years that Old Yeller became similar to a child.   Be that as it may, my days with Yeller suddenly ceased when I reached on April 22, 2016, in attempting to ask a neighbor who I gave him to was doing the post giving Yeller to her one year prior. Sadly, she returned my comments by mentioning that Yeller was gone and had been put to sleep a few weeks earlier.  This was in due part to some sort of illness from facing years as a homeless cat before taking him in two years ago that the vet had guessed was hemorrhaging and increasing blood in the stool.  While one would normally break down in floods of tears after dealing with a significant loss, rather I seemed to relate to more to Mr. Spock where there are no emotions and only logic as to why my neighbor put him to sleep.  On the contrary, if ignores me or if one is ugly to me then I will sob uncontrollably.  Yet, my response losing Yeller was again very similar to the response of a Vulcan where logic and reasoning filled the gaps.  After learning how I respond to the bereavement of Yeller, I elected to do weeks of research on the effects of the autistic brain and lack of emotional response.

While hearing the news of a great loss did not trigger a deep emotional response, I had attempted two other actions that I thought might help. The first being that I had gone to visit Yeller’s burial site and even set some cat toys there.  Yet no such emotive response arose.   My second attempt included watching two different videos on YouTube about two discrepant felines who spent the last moments with their owners at the vet before facing euthanasia.  Once again I experienced no emotional regulation but rather had more interest in the effects of the drug and each feline’s response during those last few minutes on planet earth alive.  What I discovered firsthand is that the little mousers appeared to be in a state of constant relaxation rather than inert.  Whilst I realize that some people might be quite disturbed they may not realize that the autistic brain processes emotions adversely than those of a neurotypical.  Further on researchers also learned that two types of codes were discovered in both visual as well as OFC; Anderson et al. (2014).

Just located about the eyes, the orbitofrontal cortex is responsible for processing executive function in such areas as rewards,  such areas include controlling impulses and processing rewards.  Other areas include recognizing emotions in others and displaying adapted behaviors during the period one’s youth.   Finally, the orbitofrontal cortex is responsible for picking up vocal and social cues.Many investigations have been done regarding  autism and the orbitofrontal cortex and what they have found were similarities in the emotional malfunction in the brain of both individuals with autism and the nonhuman primates; Coleman et al (2005).

Two years ago, Anderson and a team of neuroscience postgrad students conducted a study on the effects of emotion and sensory processing in the orbitofrontal cortex (OFC). This area is responsible for the deeper perception of olfactory processing and the visual frontal cortical lobe; E Rolls (2004).  During the study, Anderson asked 16 participants to look at 128 pictures along with smell various distinct scents.  What they found was that the OFC contained very small grains that held a specific code of patterns in both pleasant and unpleasant situations based on what was seen. Furthermore, they learned that these grains could lean in opposite directions depending on the emotions; Anderson (2014).

In 2012, MedPage Today published an article based on the work that Ecker and a team of researchers who conducted a neurological study. “Autopsy and neuroimaging studies have demonstrated multiple differences in brain anatomy of individuals with ASD compared with the general population,” Bankhead, Ecker; (2012).   What Ecker and her team detected was that the cortical volume was greater on the left side of the orbitofrontal cortex rather than on the right in those with autism.   Furthermore, Ecker observed a correlation between reduced cortical mass and the severity of autism.  Finally, they learned that the cortical mass held a greater level of decrease in the right orbitofrontal cortex versus the left; Bankhead.

In her article Ecker interpreted:

These two factors are likely to be the result of distinct developmental pathways that are modulated by different neurobiological mechanisms. Both cortical thickness and surface area would thus benefit from being explored in isolation to elucidate the etiology and neurobiology of ASD, they added.

In late 2014, Lori D, covered a story in her blog series “A Quiet Week in the House” when breaking the news to her then adolescent son Thomas.  “Oh. So, then we’ll get a new kitty,” he returned with a lack of emotion as if he was referring to a damaged rug that had so many stains that one could easily replace it.  Furthermore, Lori also went on to mention that Thomas went over exact calculations in hid head about the life span expectancy of their cat.    This included the date when she would be expected to die.  Other ways he coped with her death was by giving a deep reasoning as to why he wanted her to be cremated versus buried due to fears of a potential change in routine.   Furthermore, he had lots of intelligent inquiry on the day of Pearl’s departure at the veterinarian upon telephoning Lori while she was at the vet.  In her blog, she explained that he asked “I know about Pearl.  Are you going to cremate her or bring her home? Is she dead? Are you going to bring her home? Is she dead? Will I see her dead body? Will you burn her on the charcoal grill? Is she dead?” She also discussed that Thomas would have rather seen his cat cremated verses being put into the ground because burial meant full departure. Finally, Lori discussed that her son wrote a poem to show his acknowledgment of her death D, L. (2014, October 3).

In the biographical film “Temple Grandin” starring Claire Danes, three scenes were shown where Grandin encountered death.  Rather than responding by breaking down into floods of tears, she questioned life after death.  She often asked, “Where do they go?”  Amid her high school years, one scene showed a favorite horse of Temple’s lying dead in the stable.  While she a inquired on Chestnut’s life after death to her favorite teacher and mentor Dr. Carlock, she explained that she saw millions of pictures of horses in her mind who resembled Chestnut.  This was after Carlock provided a suggestion not remember Chestnut in the current state of death , Jackson, M. (Director). (2010).

Though very little emphasis has been put into conducting research on the grief and the effects of the autistic brain,  there have been countless studies on autism, emotion, and the brain. In the website “Grief  and Growth” studied have proven that in the brain of a neurotypical brain that:

  Deep within our brains, lie structures that help translate signals from broader parts of  our brain.  The main structure is the limbic system, which contains the hypothalamus,  amygdala, and hippocampus.  The limbic system is the center of our emotions, learning   ability, and memory.  The amygdala, in particular, is responsible for our fear response and other emotional reactions, whereas the hippocampus is responsible for memory.  The hypothalamus regulates our emotions and secretion of hormones.  Signals are sent from the hypothalamus to signal the secretion of hormones to our body, allowing us to respond to certain situations, Bartel (2013).

On a web page of the site “Autism and the Human Brain” it is said that:

Research has shown that in some individuals diagnosed with autism, there are structural abnormalities in the Hippocampus. Dr. Bauman and Dr. Kemper of Harvard Medical School and Boston University School of Medicine have completed extensive research on autism and neurological damage to the Limbic System. They have examined post-mortal brains of individuals with autism and have found the Amygdala and the Hippocampus to be underdeveloped. In particular, they have reported finding densely packed, unusually small neurons in the Amygdala and Hippocampus of autistic individuals. The exact implications of the findings are still unknown, and more research must be completed in order to definitively connect autism to abnormalities in the Limbic System.

While I spent many hours and weeks attempting to find information in putting together first scholarly research blog, I expected more emphases to put into grief and the autistic brain which was rather frustrating.  Especially since there seem to be no current studies or findings on the bereavement and the effects on the autistic brain regarding the emotion.  What I did find that I was able to come up with my own question which appears to be answered.   Is the lack of cortical mass in the right hemisphere of the orbitofrontal areas connected to the lack of emotion?  Either way, we know that information is processed in the right hemisphere of the brain and that is why I ask the main question above.  Though I have never done any neuroimaging while viewing a series of videos of cats undergoing euthanasia while monitoring facial expressions,  this is a study that I would participate in as I learn more about myself and how my brain functions.

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