By MeiMei Liu
When my father died of lung cancer ten years ago, I was 18 years old. My mother wailed over his body for hours, like a Greek tragedy. My 19-year-old brother simply shut down. I, who am autistic and non-verbal, simply dealt with my grief on my own. Few observing me could tell what I was thinking or feeling.
Earlier, when my father had returned home from the hospital, the hospice worker spent a long time with my mother preparing her for the journey ahead – but no special attention was paid to me. My mother was absorbed with my father’s physical and emotional needs; my brother was away at college. My aide tried to act as if nothing was wrong, even on the day my father died. The unspoken strategy was to try to keep my emotions on an even keel.
But, in fact, I was raging inside. I communicate using a keyboard with a trained communication partner. However, neither loving family members nor my communication partners directly inquired about my feelings regarding my father’s death. They didn’t ask – I didn’t tell.
The mortuary came to collect my father, zipping him up in a plastic bag and rolling him out of the house on a gurney. I had had the opportunity to say goodbye, but I don’t think it registered that it was the final goodbye. The household, which had been under a pall, was now aflurry in preparation for the funeral and home reception. I was not included in any of the planning. I don’t blame my family; I am not resentful. But it could have been made easier for me.
Growing up, my family had diligently provided every type of therapy imaginable to help me. However, in their time of grief, they uncharacteristically left me to struggle with my own. As much as they were intimately aware of the challenges and deficiencies arising from my autism – as well as my abilities and accomplishments in spite of it – they essentially left me out. Their instincts were to not make waves, not to rock the boat, but instead, to try to maintain routine and calm.
However, that is not what I needed. As is common for autistic individuals, what I needed was counter-intuitive. I needed a crash course in grief and mourning, a set of tools to deal with a new challenge. I needed instruction, not denial. My family was not denying their own grief, but they were, inadvertently, denying mine.
I did attend the funeral; I did attend the home reception – and I successfully kept my “behaviors” under control. However, my engagement with this very human rite of passage could have been eased with a different plan of action.
For the past two years I have been privileged to be a member of the Autism & Grief Project Advisory Board, which aids both families and professionals on the grief journey of those on the autism spectrum. Our mission has been to make public the notion that grief for those on the spectrum is as varied as the spectrum itself. But I personally believe there are some commonalities which can open a broader course of action and understanding.
First is the presumption of competence. Many people on the spectrum are unable to make eye contact, or to produce intended facial expressions. Many have difficulty with social interaction; many, like me, are non-verbal. But when I was first learning to communicate, the instructor would frequently remind my partner in training to presume that the person communicating has sufficient intellect, and sufficient knowledge of the language, to communicate. This is the only way that a communication partner can effectively assist a non-verbal individual.
Similarly, despite whatever affect, or lack thereof, and whatever behaviors, escalated or diminished, neurotypical people should presume that the autistic individual can understand what death is, what grief is, and the nature of the mourning process. They must presume that autistic individuals can be helped through grief with both compassion and education. Every individual on the spectrum is going to respond differently to the death of a loved one – as does every neurotypical individual. Many autistic individuals may have led more sheltered lives, as families have tried to shield them. Hiding one’s head in the sand or running away from death, however, simply doesn’t work.
Responses to grief might include sudden increases in mal-adapted social behaviors – including self-injurious behavior – or increased self-stimulatory behavior (a comforting/coping response) or an apparent total lack of emotional response. But I can assure you that a response is brewing inside. A myriad of strategies can address that response, but ignoring the issues should not be among them.
Even for neurotypical people, grief and mourning is an extraordinary experience which calls out for comfort, even if they may deny the need for assistance. The situation is even more acute for autistic individuals. Facial affect, lack of eye contact, or inability to communicate might all seem to insist that assistance is not welcome. However, nothing could be further from the truth.
Many autistic individuals are comforted by routine – or so it appears. My personal analysis is that they are comforted by knowledge of what is to come, not the routine itself. A break in routine is not as disturbing as not knowing what alternatives are available. Accordingly, following a death, carefully explaining the funeral and memorial arrangements becomes crucial for an autistic individual. Offering a choice regarding the degree of their involvement is only common decency. No one should be forced to participate, but no one should be left out.
The focus should be on the autistic individual’s comfort level – not whether that individual might act out and upset the ceremony. Someone with a developmental disability is still a full member of the community, and they deserve the respect of the community. If other mourners are bothered by imperfect social behavior at a time of mourning, perhaps rather than sheltering those individuals from the realities of neurodivergence, they need to be exposed to it – just as Scrooge needed to see Tiny Tim’s crutches at the fireside in order to comprehend the needs of the disabled.
As well as during the time of mourning, autistic individuals need consideration during the long aftermath. Conversations, regardless of the means of communication, need to take place – and in earnest, without a predetermined schedule. Grief is a process, and autistic individuals experience it as such, like everyone else. An autistic individual’s apparent return to usual routine is no more an indication of healing than that of a neurotypical person.
For many years, I would sit on the couch relaxing and enjoying a television program when something would suddenly remind me of my father and the tears would gush forth. My mother would run to my side and assume I had somehow injured myself, because the trigger which set me off did not do so for her. Families and professionals should be ready to address issues of mourning and grief in autistic individuals over the long haul.
Grief does have a bright side, as do most experiences in life. One learns the value of the present moment, like light in contrast to dark, love and comfort is only heightened in absence. Autistic individuals are capable of learning such lessons – and deserve a chance to do so.
MeiMei Liu is a member of the Autism & Grief Project Advisory Board.
