Dealing with loss as an autistic adult.
Topics we’ll cover:
How will I feel?
How should I act?
How do I conceptualise death?
What happens after a death?
Who can help me?
Bereavement: the state of loss, having experienced a loss
Physical loss: the loss of something you can touch, like a person or animal
Asbtract loss: the loss of something which relates to social interactions, like the loss of a relationship
Grief: the reaction one has to loss
Because, as much as we try to avoid the topic, we will all experience loss.
Due to the Covid-19 pandemic, we may have to face death more suddenly then we expected. As autistic adults, we live the unfortunate truth that our expected lifespan is 54, compared to 70 for allistic people. The leading cause of death for autistic adults is suicide. We are more likely that allistic people to lose our friends or family in this way.
This is why it is essential to know what to expect, and to know that you are not alone through the grieving process.
How will I feel?
How will I feel?
There is no “right” way to feel after a bereavement. There is no wrong way to feel. Everyone processes and copes with loss differently.
As a society, we are not very open about discussing death. People like to avoid saying it, and often prefer euphemisms, such as “passed on”, “left us”, or “laid to rest”. Even this pandemic has not done a lot to begin a societal conversation around death and how we cope with it.
“Stages of grief”
You may have heard of the “stages of grief”, which were first outlined by Elisabeth Kubler-Ross in her 1969 book, On Death and Dying. These are as follows:
1) Denial and isolation
This is just a rough guide for how we might feel after a death. You might not experience all of these emotions, you might not experience them in this order, and you might not experience this at all. They are a guide to help people understand where they might be at, emotionally, during these times.
Autistic grief is different to allistic grief.
You might find yourself feeling or acting differently to the allistic people in your life. This is okay – you aren’t doing anything wrong.
You might initially react as if nothing has happened. This can be especially true if you had specific plans in place when you learnt about the death.
For example, if you had planned to get a take-out pizza and watch Hamilton with a friend that evening, and during the day you receive a phonecall explaining that there had been a death, you might find that you want to continue with your original plans of pizza and a movie.
That’s okay. A delay in processing the news is completely fine.
How does grief manifest?
Others who are grieving the loss might show their emotions overtly, by openly crying or becoming angry. You might not experience an overty emotional display. You might have an emotional display which is “delayed”, or which is extreme.
As an autist, grief may manifest as an increase in autism traits (such as reduced tolerance for stimuli, a lowered masking ability) or in a “shutdown”. A shutdown is when you lose your ability to process, and experience extreme fatigue. Look after yourself, and allow yourself to rest.
Am I suffering from mental illness?
You might encounter a range of thoughts, feelings, and experiences which are distressing. You might experience feelings of overwhelming depression or anxiety. You might experience visual or auditory hallucinations regarding the person who has died. You may have panic attacks, nightmares, or intrusive thoughts about the event; these are trauma responses. These sorts of things can be quite common during grief, and they typically pass with time. However, there is absolutely no shame in seeking support or medical help for distressing symptoms.
How does grief manifest?
Alone or Together?
Allistic people often find that talking through the loss helps them to process it. They might want to speak about how they feel, share stories of the person who died, and be quite social in the ways that they process. If this helps you, then that is great. Sharing stories is a wonderful way to keep the individual “alive” in your memories.
However, you might find that you actually want time alone to process and work through things. That’s also fine. Again, there is no wrong way to cope with a death.
I Don’t Know How I Feel.
You might have no idea how you feel. That is quite normal. You might feel an overwhelming something that you cannot quite name. You might feel nothing, or emptiness, or a void of some kind. You are trying to process the fact that an individual who you love is now nowhere. This is an extreme shock; any response you have is valid.
How Does Grief Manifest?
I Don’t Feel Anything.
You might have expected to feel a lot of things after a death. However, this isn’t always the case. Anhedonia is a loss of feeling enjoyment in things which previously brought joy, such as spending time with loved ones, special interests, food, etc. It is a feeling of numbness, or emptiness, or nothingness. This can be extremely distressing, and you might feel guilty for not feeling sad, or for not acting in ways people expect, such as crying.
A feeling of numbness or emptiness isn’t unusual after a loss. Your emotions should return with time – and they might come back quite intensely.
On average, 10-15% of people will experience severe grief, and there doesn’t seem to be research into whether this is more or less common for autists.
Prolonged Grief Disorder (PGD) refers to the state of having experienced extreme grief for over 6 months, leading to physical and psycho-social dysfunction. The characteristics of PGD are as follows; “extreme focus on the loss and reminders of the loved one, intense longing or pining for the deceased, problems accepting the death, numbness or detachment… bitterness about your loss, inability to enjoy life, depression or deep sadness, trouble carrying out normal routines, withdrawing from social activities, feeling that life holds no meaning or purpose, irritability or agitation, lack of trust in others.”
In these cases, grief is treated as a trauma response and is supported through theraputic intervention.
How Should I Act?
There is no real “should” when it comes to grieving, and how you behave after a loss.
However, here are some things that you “should” do:
– Give yourself permission to feel, especially if you are prone to repressing emotion.
– Give yourself permission to rest.
– Remember to eat, drink, sleep, and wash. The world can feel very pointless after a loss, and it is important to continue to do these self-care behaviours.
– Allow yourself to have realistic expectations for recovery post-loss. Characteristics of grief can last for a long time; there is no timetable of processing a loss. It can take about a year to fully understand the extent of the “hole” in your life created by the loss.
How Do I Conceptualise Death?
The concept of death is unlike most other concepts. Usually we have an object and the concept of that object. For example, we have a horse and the concept of a horse. However, the concept of death is absolutely without any object whatsoever. Thinking about the prospect of one’s own death is a constant meditation upon our own ignorance. There is no method for getting to know death better, because death cannot be known at all.
– Jeff Mason, Lecturer of Philsophy, Middlesex University
There are so many ways to conceptualise death, and having a personal interpretation of what occurs when we die can bring comfort during bereavement.
If you are religious, then your religion probably has a conception of an afterlife or a rebirth of some form. Thinking about how your loved one continues to live in one of these forms can be a comfort.
If you are not religious, there are still ways to conceptualise death which bring comfort.
If you believe individuals experience after-death similarly to how we experience pre-birth, then you may be able to take comfort in the idea that your loved one is no longer suffering the hardships of life.
Another way of conceptualising death is as follows;
Energy cannot be created or destroyed, and thus the energy and the molecules which made up the physical form of your loved one are simply being reshaped and returned to nature. We are borne of stars, and we return to the universe once we die.
Picture a wave. In the ocean. You can see it, measure it, its height, the way the sunlight refracts when it passes through. And it’s there. And you can see it, you know what it is. It’s a wave.
And then it crashes in the shore and it’s gone. But the water is still there. The wave was just a different way for the water to be, for a little while. You know it’s one conception of death for Buddhists: the wave returns to the ocean, where it came from and where it’s supposed to be.
– Chidi Anagonye, The Good Place
There are so many ways to conceptualise death, and no one way is better or more correct than any other way.
What Happens After A Death?
It can help with processing the death to understand what is going to happen to the remains of your loved one.
What Happens Socially?
In the UK, we typically bury or burn (called cremation) an individuals remains.
This is usually accompanied by a ceremony, which will be different for different individuals, as this is (typically) organised by the family and/or loved ones as a way to respect the memory of the deceased person.
The “vibe” of the ceremony may be solemn and of mourning, or it may be an up-beat celebration of life. If religion is involved, then there may be praying or singing hymns. If religion is not involved, then these ceremonies tend to be more structured around sharing memories and thoughts about the deceased person.
These ceremonies aim to provide a sense of “closure”. This is a chance to say goodbye, and to see where the remains have gone to (i.e. the burial site, or ashes which are typically scattered in a special place, or kept in an urn.)
You might not feel any better after the ceremony. That is okay too. We all process things differently.
What Happens Physically?
There is nothing wrong with wanting to know what happens to a body after death.
Due to the taboo nature of death, wanting to know these things can be seen as insensitive or morbid. However, it is completely normal to want to understand what is going to happen next. Knowing this can help you understand what is going to happen to your loved one’s physical remains.
“I also found myself recreating the accident in my mind. I wondered what her last thoughts were and how quickly she died. I tried to picture exactly how the accident played out. I wondered what her body looked like. I even searched the Internet for information about how the decomposition process works. Why? This is not some perverse fascination with death. It is because I have such a hard time wrapping my head around how someone can be alive and happy one minute and essentially cease to exist the next. A once lively face is now just a piece of a decaying body. A once-thinking, intelligent brain is returning to the earth. It does not know it is dead because if it is not conscious, how can it know it?
How does it feel to not be conscious? It doesn’t.”
Eccentrics United, Aspergers and Death
- The body is cleaned, bathed, and dressed, ready to be identified.
- Once identified, jewelry is removed so it can be kept by the loved ones if they want. Medical devices which contain batteries are also removed, as these don’t burn. The clothes can also be removed.
- The body is put into a special cremation casket, which is completely combustible.
- The body, in the casket, is passed through a chamber which burns at 2000 degrees.
- The body and the casket are completely reduced to ashes. There are typically 3-9lb of ashes. This is a mix of the body and the casket. Any extra metal is removed by magnets.
- The ashes are then transferred into a temporary container or urn, ready to be given to the loved ones. The ashes are then kept, scattered, or buried.
- The body is cleaned, disinfected, beathed, and dressed, ready to be identified.
- Once identified, the body is refrigerated to slow decay. At this point, an autopsy or organ removal for donation occurs.
- The body will be “enbalmed”, which is an injection of preservative.
- The loved ones then chose what clothing, jewelry, and items the body will be buried with. This differs depending on religious and personal beliefs.
- If there will be an open casket or the body will be viewed, then the body will be prepared for this by being cleaned, cosmetics applied, and the hair styled.
- The body will then be kept in the “Chapel of Rest” at the funeral home, or brought back to the loved ones home.
A funeral typically has four parts; the funeral procession, the funeral ceremony, the burial, and the reception/wake.
The body is placed into a coffin, which goes into the hearse, which leads a slow procession of cars to the church.
The coffin will be held above the grave by wooden planks in order to give time for prayer or a goodbye.
The coffin is lowered into the grave. Sometimes, soil will be thrown onto the coffin by loved ones.
The reception is then held in a loved ones house or other venue. This is a chance for people who were unable to attend the burial to also say goodbye to the dead person.
What About The Body?
CW: descriptions of the processes after death.
Step One: Autolysis
4 minutes after death onwards:
Breathing has stopped, so the body has no way of getting oxygen. Excess CO2 causes the body to become acidic, and membranes inside the cells rupture. This releases enzymes, which start to break the body down.
Rigor mortis causes the muslces to become very stiff. The top layer of skin becomes loose.
24-72 hours after death:
The internal organs break down.
Stage Two: Bloat
2-4 days after death:
The released enzymes start to release gasses into the body. The body can expand to double in size due to this process.
A release of bile into the body can cause the skin to turn a yellow-green colour.
The body begins putrefaction, which causes an unpleasent smell.
Stage Three: Active Decay
8-10 days after dead: The blood decomposes and gas continues to accumulate in the abdomen.
Several weeks after death: Hair and teeth fall out.
1 month after death: The bodies soft tissues liquify. A lot of mass is lost here. The hair, teeth, bones, and cartilage remain.
3-4 months after death: The body turns reddish-black, due to the oxidisation of iron in the blood.
12 months after death: Cotton clothing disintergrates.
Stage Four: Skeletonization
There is no set timeframe for skeletonisation as it is dependent on the environment.
10 years after death: In a wet environment, the fat changes into a soap-like substance called “grave wax”. In a dry environment, the body will become naturally mummified.
80 years after death: Bones begin to crack as their soft collagen deteriates, leaving a brittle mineral frame.
100 years after death: Bones are reduced to dust. The body has returned to the earth.
Who Will Help Me?
You don’t have to deal with bereavement alone.
Service; Whom; Contact
CALM. Men aged 15-35. Phone (0800 58 58 58) or webchat, 17:00-00:00
Support After Suicide. All who have been affected by a suicide. Digital resources on supportaftersuicide.org
Cruse Bereavement Care in Nottingham. All who have suffered a loss. Phone (0808 808 1677) Email: email@example.com
Samaritans. All. 116 123 (24/7)
Mencap. People with learning disability. 0808 808 1111 (10:00-15:00, weekdays)
Service; Whom; Contact
The Bereavement Trust. All who have suffered a loss. 0800 435 455 (18:00-00:00)
Child Bereavement UK. All who have suffered the loss of a child. 01494 568900
The Jason Spencer Trust, Nottingham. Those who have suffered a violent or traumatic loss. 0751 461 8147 (10:00-17:00)
Nottinghamshire Bereavement Trust. All. 0800 435 455 (18:00-22:00)
Pet Bereavement Support Group. Those who are struggling with the loss of an animal. 07976 890111
If you are at risk of self-harm or suicide, call 999.