It has been said that no one else has the right to dictate
how another person grieves. It’s also been said that people with autism grieve
differently to others. This inference makes sense - realistically it’s widely
known that autistic people experience, process and express emotion differently
to others. This does not however mean that we feel less, many autistic people
have suggested that they feel too much rather than too little and can be
overwhelmed to the point of having difficulty working out how to express what
we’re feeling.
As a consequence of this, we can appear to be aloof or
detached. We also seem to always have the myth hanging over our heads that we
don’t have empathy - which could potentially give rise to people doubting whether
have the capacity to grieve or to console others experiencing grief.
Sometimes people even have the misconception that we are
somehow cognitively reduced to being emotionless zombie robots (a misconception
which is not helped by the media always seeming to question if every
non-religiously motivated mass-murderer is autistic despite the fact that
autistic people are far more likely to be the victims rather than perpetrators
of violent acts).
Two years ago today I experienced my first major loss. My Nana
died not long after receiving a cancer diagnosis - which was accompanied by a
far longer prognosis of life expectancy than what actually eventuated. She was admitted to hospital one evening and
was gone in the early hours of the following morning. That day was the first
time and only time she had ever been admitted to hospital for anything to do
with illness.
In January of 2013, about three months before my Nana’s
death, I moved from Adelaide to Canberra for my first real (full time) job. If
I’d known how soon after this my Nana would leave this earth I probably
wouldn’t have gone, or at least would have waited one more year. Having just started a new job I didn’t have
much opportunity to come home. I also didn’t know how little time she would
have left. That Easter was the last time I saw my Nana alive. The family came
together and she spent most of the day in bed – chemo had left her feeling weak
and perpetually exhausted. The last conversation we ever had all she wanted to
speak about was how every one was enjoying themselves and asking me to go into
her “present cupboard” to see if there were any chocolates to share with the
family. She could barely stand but was still trying to take care of everyone
else.
It wasn’t long after that trip and she was gone. I was in
Canberra and the rest of the family was in Adelaide. I knew my family were
feeling what I felt and trying to be there for me as much as I was trying to be
there for them bur realistically I felt pretty alone. They had each other, they
had shoulders to cry on and people to hug whereas I had people I’d been working
with or living with for only a few months and didn’t really feel like I knew or
could turn to.
My initial grief was something I dealt with on my own, not
by choice but by circumstance. Today, two years on, I find myself in the same
position. While grieving alone might be what you expect for someone with
autism, for me at least it is something that worked out that way rather than my
conscious choice. It’s true that I need some space to work through my emotions
but it’s also true that for the most part I would prefer not to be alone.
In the lead up to the funeral, as I experienced those first
few days of grief alone before being able to fly home, my biggest fear was that
I wouldn’t be able to cry and that I would be judged as a person, and
particularly as a woman, if I wasn’t able to show enough emotion. I didn’t
really know what to feel, or how best to express it or what I wanted someone to
do or say. One thing I did know was that it was really important to speak at
the funeral. I haven’t always felt like the most equipped person to know what
to do to demonstrate love, but I have always felt like I was good with words
and I hoped that I would be able to show how much my Nana meant to me through
speaking about it. That my words would make my love clear and paint my emotions
in a way that people could see and understand.
My Nana was the person I felt closest to on this earth. If a
person could feel like home, she was the person who most embodied that for me. We
had always been close. I was the eldest granddaughter and realistically in a
lot of ways probably the favourite (though I also feel like we each had the
kind of relationship with her that my siblings and I probably all felt that way).
She was the person that I looked up to, whose advice I was always grateful for
and whose warmth and unconditional acceptance I always felt.
When I imagined what my wedding day would look like, she was
the person I always pictured would be smiling at me and saying I looked
beautiful as I was getting ready to take the step of starting a family of my
own.
I found through the experience of writing and weeping over
that eulogy that I didn’t have to prove what I was feeling to anyone. The way I
grieved wasn’t so different to anyone else. My brother, who also has an autism
diagnosis was the same. He didn’t say much but he was a rock for a lot of
people that week, a quiet and unassuming source of hugs for whoever may have
needed them. To me it was beautiful how everyone’s way of grieving was
accepted. My brother and I grieved differently and went through a different
range of displayed emotions, but that was because we are human not because we
are autistic.
So where does that leave me today? A day where my loss coincides
with what is probably the greatest celebration of hope, life and shared
experiences on the Christian calendar. Today, I acknowledge my grief but I also
choose to reflect and to be thankful. I am thankful for the seemingly endless
school holidays we had spent together as I was growing up and even into
adulthood. I am thankful for all the biscuits we made together and all of her
childhood books I read. For how she modelled what it was to be an
others-focussed person, teaching me to be generous with time and my resources and
to be sensitive to and perceptive of other people’s needs.
Today, I find myself alone. My family are together, but I
was not able to travel home for Easter this year. I went to Church this morning
but other than that I have an empty house, leftover pizza and Christian music
playing in the background for company. I am not saying I begrudge this, or that I’m not grateful.
But I am saying that if I had the option I think I would have rather spent
today celebrating life with others and experiencing the same kind of Joy that
my aptly named Nana embodied than spending it alone. Sometimes being alone is a matter of circumstance rather than choice.
So where does that leave my ramblings? I guess what I am
trying to share is that my grief is not that different and my emotions are real.
That if you know someone who is a bit isolated, whether they are autistic or
not, that it can mean the world to them to have someone think of them and give
the option of someplace to go on the kind of days where so much emphasis is
placed on celebrating with your family.
I’m not trying to make any kind of statement about faith but
about humanity. We are all walking through this thing we call life. We don’t
have to all do or feel things in exactly the same way but that doesn’t make us
any less part of the great sea of people stretched out across this world we
call home. We may not always communicate or understand each other but it’s
important that people feel valued, and it can be as simply as people
acknowledging that others are there and giving them the opportunity to feel
connected.
