April is Autism Acceptance Month. While a lot of news this month will focus around what autism is and different programs led by or for people who are autistic, one conversation that isn't had enough is how autistic people experience and navigate grief.
MeiMei Liu is an award-winning poet and advisory board member for the Autism and Grief Project, which provides free online resources for people with autism, their families and care providers. Liu is autistic and through this project has shared her own story of navigating grief after the loss of a parent. WBFO's Disability Reporter Emyle Watkins interviews her about the project, grief, and Liu's thoughts on identity.
Note: Liu is non-verbal, so questions for this interview were provided ahead of time and you will hear them voiced by her mother Paula Shelley.
PLAIN LANGUAGE DESCRIPTION: April is Autism Acceptance Month. This month a lot of people will be talking and reading about what autism is, as well as organizations and resources created by and for autistic people.
However, a topic that is not often talked about is how people with autism experience grief and how their loved ones can support them.
This week on the Disabilities Beat, Emyle Watkins interviews MeiMei Liu, a poet and advisory board member for the Autism and Grief Project. The Autism and Grief Project provides resources for autistic individuals who have experienced loss. The project also provides resources for family members and care providers on supporting people with autism through grief. MeiMei is autistic. She shares how she experienced grief after losing a parent, through the project. She also gives advice on grieving if you are neurodivergent and her thoughts on identity.
In the audio of the interview, you will hear pauses as MeiMei types some of her answers. MeiMei's mother, Paula Shelley, reads her answers out loud.
TRANSCRIPT
Emyle Watkins: Hi. I'm Emyle Watkins and this is the WBFO Disabilities Beat.
April is Autism Acceptance Month and one conversation that isn't often discussed is how grief impacts autistic individuals and how loved ones can provide support. I recently interviewed MeiMei Liu, an award-winning poet and advisory board member for the Autism and Grief Project, which provides free online resources. Liu is autistic and nonverbal, so these questions were provided ahead of time and voiced by her mother, Paula Shelley, in a Zoom call. How did you become involved with the Autism and Grief Project?
MeiMei Liu: My physician, Dr. Ricki Robinson, an autism specialist, was already involved in the project and recommended me. She was aware that I had suffered my own losses and dealt with grief. I was also asked to join the project to contribute the point of view of an individual with autism who is also nonverbal.
Emyle Watkins: If you're comfortable, would you be willing to share a little bit about your experiences with grief that led you to this work?
MeiMei Liu: My experience with grief corresponds with my own experience with death. My father died of cancer a little over 10 years ago, when I was 19, and my grandfather died 10 months later. Since then, both my grandmothers have died and almost all of my mother's cousins, aunts, and uncles.
Emyle Watkins: I'm sorry to hear that.
I'm wondering, what are some of the resources that you've worked on or want to highlight that the Autism and Grief Project offers?
MeiMei Liu: I am part of the advisory board that was in charge of editing every aspect of the online content, except for matters that specifically applied only to grief professionals. I also participated in a series of video interviews, some of which became animated sequences available on our website.
The Autism and Grief Project was looking to me for my personal experience regarding the material and my views on how to make it most accessible and appropriate for adult members of the autism community.
Emyle Watkins: Is there anything you feel like neurotypical people, especially loved ones, may not understand about grieving as a neurodivergent person?
MeiMei Liu: It is important to understand that many individuals with autism have difficulty communicating, verbally and emotionally, as well as organizing their body posture or facial expressions in accord with their feelings or thoughts.
Accordingly, they may not appear to be grieving in the same ways that neurotypical individuals do. Professionals and loved ones of grieving individuals with autism need to communicate with the grieving individual and not assume that nothing is going on emotionally inside. They need to inquire about what the individual with autism needs and give them choices regarding all aspects of the funeral and grieving process. Whatever you do, just don't leave them alone. Don't assume that they don't need your love, attention, and assistance.
Emyle Watkins: Do you have any advice for autistic people who may be dealing with grief now?
MeiMei Liu: I would encourage autistic individuals to access our website, AutismAndGrief.org.
I would encourage them to communicate their feelings and needs to those around them the best they can and to remember it's not important how they choose to grieve or what part of the funeral or grieving process they wish to participate in, they just need to do what is best for them. Don't be afraid to reach out for assistance.
Emyle Watkins: Before we ended the call, I asked Liu if she would mind if I asked her a few more questions that came up as I listened to her, and she agreed to have her mother read her answers as she typed them. I want to leave you with part of that conversation because she makes a point that resonated with me, and I think it's important to remember as we talk about autism this month. She emphasized that people are more than just one part of their identity or experience.
Emyle Watkins: I'm wondering, has poetry opened up new avenues for you to express some of these experiences that you went through with grief?
MeiMei Liu: Oh, that's an interesting question. Actually, I've been assigned, as coursework, some assignments that led me to deal with those issues, and frankly, I hated it.
I don't know if it's because I'm avoiding the issues or whether I feel my grief is private, but it's not a form of poetry, academically referred to as confessional, that I personally advocate. I'm more of a narrative public political poet. I want my poetry to inspire change, and I don't necessarily feel that my personal experiences are so exceptional or extraordinary that they could possibly promote that.
Emyle Watkins: So, it kind of sounds like, poetry became an avenue for you to focus on these bigger societal issues, and then the Autism and Grief Project has been an avenue for you to talk about these experiences that a lot more people can relate to in terms of grief?
MeiMei Liu: I'm not a person who puts things in boxes. I think today's obsession with identity issues is something that, in many ways, I find offensive. I'm not just autistic, or just Chinese, or just Jewish, or just American, or just a woman, et cetera. I'm an individual, and I would like to see our society moving toward more respect for the individual.
Emyle Watkins: Thank you. I appreciate you giving me more perspective on that and that makes a lot of sense. And I think, especially in the disability community, a lot of people outside of it tend to just see us as one thing or just that one identity and not so much all of these other pieces and parts of us.
MeiMei Liu: And worse yet, that if you are many things, that means you're not enough of one thing to represent that community. I have had run-ins with mono-racism where some have assumed I can't speak for the Chinese or Jewish community or even the autism community because I don't fit the stereotype of members of those communities.
Emyle Watkins: To listen to the Disabilities Beat segment on demand, view a transcript, plain language description, and learn more about the Autism and Grief Project, visit our website at wbfo.org.
I'm Emyle Watkins. Thanks for listening.
A note on language used in this story: WBFO uses the National Center on Disability and Journalism Style Guide, which reflects that journalists should ask guests how they prefer to be described, as we did with Liu who identifies as autistic. NCDJ's Style Guide reflects that there is no one "right" way to describe autism; some individuals prefer to be described "as autistic," some prefer "an autistic person" or a "person with autism."
