Adults with ASD and Death: Mourning and Mornings Aren’t Easy

MBHM with mother, Beth, in 2003

My Brain Hates Me with her mother, Beth, in 2003

Growing up on the spectrum but being undiagnosed was difficult enough. I’ve experienced a lot of deaths along the way in the up-close, gut-wrenching way that some people do. Death is a part of life, but I’ve never known how to grieve. Whether this is an ASD characteristic, a failing on my parent’s part (which is doubtful because society is really uncomfortable with death as a natural process), or merely something that we as humans have lost the ability to do is unknown.

A friend of mine lost her mother in a way that is heartbreakingly similar to the way that I lost my own. The difference is that my mother claims to have been ready and her mother still had some fight in her. Sometimes fight isn’t enough to tip the scales and God, or science, or what or whomever, does what they are going to do. It’s tragic and I am incredibly sorry for her family.

Of course, those feelings about my mother in her final months are flooding in, and the feeling of fresh grief is flooding in, and it’s taking a long time for me to process all of it. I feel a bit frozen by it. Overwhelmed.

Autism in Adults is Still Talked About More By Adults with Autism than by Professionals

This morning, I took to the internet (as I do) to find some articles on adults with ASD and how they grieve. It came as no surprise that most of the information was written about how to handle children with ASD who are dealing with a death in the family and that the rest of the information were scattered personal accounts. Even Psychology Today has a personal account, albeit from one of the most respected autistic people in the nation, Lynne Soraya.

The trend that I see among personal accounts, and that I have felt during situations in which I have had to handle my own grief, is fear of doing it wrong. As an adult with autism, I understand that there are rules and social graces and expectations, but I don’t always know what they are or why they are, so I’m not always certain when it’s okay to break them. My husband is good at telling me when I don’t need to worry about other people and when I do. My mother’s funeral was a good example of when he told me I shouldn’t have to worry about other people.

Adults with Autism Feel Like They Are Doing It Wrong

His mother’s funeral was an example of when I did have to worry about other people and how I acted. My grandparents’ funerals were the same. I had to be on my best behaviour because those deaths weren’t about me. They were about other people losing friends and parents. But it’s very confusing.

I know how funerals are supposed to happen in my family. You have a wake, you have food, you dress up and Southern women tell inappropriate jokes while sipping sherry and eating little ham biscuits, then you have the funeral. Occasionally, I sing something. You don’t cry unless you are also telling a funny story about the deceased. There are always funny stories about the deceased. Always.

Growing up, I never saw adults cry at the funerals I attended. I saw people be quiet. I saw them look sad. Maybe I just didn’t look hard enough because I was so distracted by everything else that was going on. There were pretty dresses and suits. Lovely grass. I got to dress up.

I don’t remember if my mother cried at the funeral for my twin brothers.

So when my mother died and I cried at her grave side and I couldn’t stop crying… I felt like I was doing something wrong. When people came over to my house after for wine and little sandwiches, it had to be perfect because that’s what you do. You give people wine and little sandwiches. I was so worried about doing it right so that everyone thought that I was good at funerals and grieving properly.

That’s all that I thought grief was.

When everyone left the house, I thought that I would feel better. I thought that I wouldn’t feel sad anymore.

But I, and all of my grief, were still there the next morning when I woke up. I had no model for that. Because I grew up in a family that suppressed emotions and went on about their business, I didn’t see people being sad. I didn’t connect my mother’s drinking with sadness. I didn’t understand any of it at all.

Without those models, I had nothing TO model. I had thrown the perfect funeral… and then I didn’t know how to grieve for my own mother.

Society’s Tendency to Sugar Coat Death is a Detriment for Adults & Children with ASD

In December of 2013, about 4 months after my mother’s death, I wrote something about not understanding what was happening to me. I didn’t understand why I would suddenly cry over nothing or just stand in my kitchen for half an hour. I turned to “Buffy the Vampire Slayer” for that. I wrote a blog called, “Buffy Terms” because that’s how I started to explain grief to myself.

Weirdly enough, on this, the day after my friend’s mother’s death, I am having a “Buffy” marathon at my house with two other friends. We plan to watch “The Body,” which is the episode in which Buffy’s mother dies. Buffy’s mom dies. My mom died. My friend’s mom died. People just die.

Whether you have ASD or not. I don’t think any of us really know how to handle that well. But I think that there needs to be more literature out there for people who are adults on the spectrum, because we don’t know what to do and we feel like we’re getting grief wrong.

There is no way to get grief wrong.

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Buffy Terms

When I was a little girl I believed I was both a My Little Pony and, at times, a mermaid because “Splash” was my favourite movie. Those were the two universes I desperately needed to exist and wanted to exist within. Ponyland was real, and when I was in water, mermaids were real.

Television provided something that the world around me could not: a structured place where there are specific rules, consistent core characters and stereotypes that I could grasp. In 1992, “The X-Files” premiered and I had a new universe over which to obsess, characters to love and with whom I could feel what felt like genuine connection. Scully’s smarts mixed with her human fragility, and Mulder’s wit and sadness… and the whole world against them- of course an un-diagnosed Aspie would feel at home. 

Then came “Buffy.” Buffy the Vampire Slayer, the series not the movie, premiered in 1997. I was a big fan of the movie, and couldn’t accept a non-symmetrical Buffy after Kristy Swanson’s pretty little face. I watched the series premiere, and couldn’t really get into it. It was 2000 before I watched another episode, and then Sarah Michelle Gellar didn’t seem so bad.

Eventually I got caught up on the series and did the thing that I do with female characters to whom I am attached. I obsessed about Buffy’s hair and clothes and personal drama. What she felt, I felt. I understood the deep darkness within her that her responsibilities as Slayer bred within her.

It’s been a few years since I watched the series in its entirety, but lately I’ve been playing it marathon-style. I didn’t really figure out why until the other day, and that’s why I’m writing this right now.

My mother died. I don’t know how to cope with it. The Buffy universe is something that I find comfort in… and Buffy’s mother dies. Joyce doesn’t die a fast, unexpected death either… but spends time in the hospital. Buffy has to cope with the possibility that her mother might die… with all of the other things wrong and evil in the world… Buffy’s about to lose her mother. Buffy feels guilty about being caught up with her life and her duties and her stuff. And then Buffy’s mother is just gone. No big bad comes and gets Joyce. No evil. Buffy’s mom just dies and Buffy has to deal.

I haven’t been able to make that whole process work for me- the dealing bit. So I’m trying to deal through Buffy. I’m trying to grieve for my mother through Buffy.

I don’t know how I feel 80% of the time. Frequently I will cry or be upset and not really know why, or I won’t be able to articulate it to others. But I can explain it in Buffy terms- at least to myself.

 

Death, Preparation, and Feeling Empty

We bury my mother on Saturday. I haven’t been sleeping, and I’ve all of this stuff to do. Flowers, food, cleaning, music, worrying over people who will come and go.

My husband who lost both of his parents suddenly within a span of 18 months, says that the hardest part is that you suffer this loss and it stops time in your world… but everyone and everything else keeps going. My mother died in July and I chose to delay the burial and Compline service until after Labor day because of my health. At this point I’m concerned about whether or not people will come to honor my mother, and whether or not I’ll be able to hold it together.

I grew up worrying about what everyone thinks. There is something fundamental that I don’t understand about people and that I’ve never grasped in all my years. My default assumption is that I am somehow inconveniencing people or in the wrong. It’s so desperately important to me that the flowers be right and the food be right and that the little church ladies who might  show up for the Compline at my house walk away saying, “Oh, wasn’t that lovely.”

All of this work I’m pushing myself to do now in between migraine spikes and nausea will be over on Saturday and the people will be gone and everyone will be done with it and my mother will still be dead.

I don’t feel anything other than sadness. I don’t want to be touched. I don’t want to talk or look at people. I know my family senses it and it makes them uneasy. I am so drawn into myself that it’s a struggle to act like a person in my own home.

I know this will pass, and I know my mother wouldn’t want me to go through this. She died peacefully and she’d want me to know that and find comfort in that.

Grief’s a Bitch

My mother died and I’ve been manic. My mother died and I’ve been worried. My mother died and I’ve been in pain. My mother died and I’ve been all over the place. My mother died and I had this one great afternoon where I was numb and it was fantastic.

My mother died and I’ve felt like I deserve it.

My mother died and I refuse to believe it.

I talked to my step-father and I asked the tricky question about things. People leave behind so much stuff and my mother, bless her hoarding heart, was a stuff-keeper. I asked him if he needed me to help him with things.

He said he knows there are things I’d like to have like jewelry and photos and such. Lawd lawd. I don’t know that I could stand going through her jewelry box like I did when I wanted to play dress up when I was little. I have not had contact with my mother’s belongings in a number of years. I have some of her books in my attic. She read romance novels weekly by the dozen. She could speed read and therefore read voraciously.

My mother died and now I will have to touch her things.

My husband lost both of his parents suddenly and within a year and a half of each other. They just died one day, separately. They were here and then they weren’t here. My mother had cancer and I knew there was this chance. Sure sure… Stage IV. But my mother was stubborn and I thought there was no way my mother would let a silly thing like cancer stop her from bossing people around and being unpleasant to people in restaurants.

My mother died and now I’m afraid I’ll get cancer.

She smoked and drank to excess and didn’t eat a balanced diet and didn’t get checkups or go to the dentist. I don’t drink or smoke, and I am a vegetarian and I try to feed my family good things that are made from scratch so they aren’t pumped full of preservatives.

My mother died and I am worried that I don’t eat enough preservatives. “Preserve” is right there in the name.

About a week before my mother died I was joking with my husband about the fact that I thought my mother would haunt me if she died… that that would be the sort of thing my mother would do. She would do it just to mess with me. She would do it because she’d think it was funny.

I told my son about that conversation while we were driving home from my appointment with my Psychologist on Friday. My son, thirteen, said that my mother died and was happy. He said that my mom loved me and that she went peacefully and the way she wanted to. So therefore, she wasn’t going to haunt me.

My mother died and my son is staunch about the fact that she will not haunt me.

On the way to my Psychology appointment I missed the turn into the office park. My son said, after I missed the turn, “You missed the turn.”

I asked my son why he didn’t point it out to me.

My son said, “I trust the things you do.”

My mother died and I wonder if I trusted the things she did. I don’t think I did after I had my son. I’m glad my son thinks that I do thinks purposefully, but I suppose he’s just following me blindly like I followed my mother blindly for so many years.

My mother died and I cry frequently.

Death, bereavement and autism spectrum disorders – | autism | Asperger syndrome |

“It is difficult to predict anyones[sic] reaction to the death of someone close to them, and individuals on the autism spectrum will be no different. Each person’s reaction will be unique to them. You may not recognise the person with ASD’s displays of grief, but any difference in their behaviour may be an expression of their confusion and loss. Howlin (2004) describes how the “person with autism may seem apparently unconcerned, even by the death of someone very close,… [they may focus on] seemingly callous issues, such as how much they may have been left in the will.” She then outlines one particular adult’s reaction to her fathers death, describing how she “began to embark on bizarre monologues about punishment and pain, murder and the police”, (Howlin 2004) though her father’s death had not involved the police in any way. These behavioural changes may not coincide with the death of a relative or friend, but may occur perhaps three months, six months, or a year afterwards. This will need to be recognised so these behaviours are appropriately understood and supported. (See information on behaviour: http://www.autism.org.uk/behaviour ). You may notice a reoccurrence of these or other behaviours at significant dates after the persons death; for example, at an anniversary, Christmas or birthdays.

There are recognised approximate stages of bereavement (Allison 2001):

Shock, numbness, denial

Despair, turmoil and acute grieving, including:

– anger

– guilt

– anxiety, fear, panic

– depression

– pain, appetite disturbance, breathlessness, illness

– more than usual need for sleep, sleeplessness, hyperactivity

– nightmares

– regression, loss of skills

Recovery, including

– acceptance

– resolution of grief

– when the bereaved can think of the deceased without pain or anger and can recall the times they had together in a positive way.

Please be aware of these stages: they may merge together, and not everyone will experience all of them.”

via Death, bereavement and autism spectrum disorders – | autism | Asperger syndrome |.