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.
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.
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!
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.