“Listening to stories and telling them literally heals or repairs the brain. It also helps us move closer to each other.”
An educated guess from a clinician changes the trajectory of young man’s autism spectrum diagnosis.
How did you know that this was The Moth story you had to tell?
I am a parent of a young adult who identifies as living with difference. I came to work with Larry Rosen at The Moth Community Outreach Program through Ben Drew whose organization, Open Future Learning, was looking to help parents of people who identify as living with difference tell their stories and to use these stories to train direct care staff about the lived experience of parents.
Parents of people who live with difference can often be felt to be “difficult” by the support staff providing care for their loved ones. Ben wanted to help staff that he trains understand why this might be so. He collaborated with The Moth. We had a few months of truly meaningful group processes around sharing and listening to each other as parents and supporting each other in telling the stories that we wanted (maybe even needed) to tell.
I knew that this was the story that I had to tell because it is a story about the deep challenges of receiving care in the System and explains, to some extent, why parents of people living with difference are so easily frustrated and fed up. It is also the story of the remarkable moment when a bureaucrat was able to let go of the job of being a gatekeeper (who denies services to families) and became the clinician that they were trained to be.
When clinicians and support providers working with people who live with difference, really listen to people that they are supporting rather than “go through the motions,” true change can occur resulting in the improved outcomes for the person living with difference.
All parents tell “The Story” of the pregnancy, the birth and the milestones of their children, but as a parent with a child on the autism spectrum that story takes on different dimension. I think you refer to it as “Narrative Purgatory.”
I mention in the story how, in order to get and receive support and necessary services for people living with difference or dis/ability, the stories of the pregnancy and childbirth, the developmental milestones achieved (or not) must be repeated every time a new service or support is required. This process begins when a difference or dis/ability is potentially identified--often between 12 months and 2 years of age--and continues in perpetuity.
Every support, every service sought, requires that same set of “facts” repeated again and again. It’s that repetition that becomes a narrative purgatory, the place between hell and heaven, between capacity/disability/debilitation, between what is and what could be, between getting what is needed and literally never getting it.
You are a drama therapist. Please talk a little about the work that you do and if/how it helped you manage your son.
My son helps manage me, not the reverse. He’s far more resilient, more capable in managing life’s challenges, than I will ever be.
That being said, I am a drama therapist and a Clinical Assistant Professor of Drama Therapy at NYU. Drama therapy has certainly given me a perspective on my son. Our written and therapeutic theater collaborations about dis/ability and difference have brought us into a greater understanding of how we capacitate and debilitate each other and how structuralized systems of oppression function within and around that.
Drama therapy considers health and well-being to hinge upon our ability to inhabit the many roles that we are required to play in life—“All the worlds a stage”—and sees ill health as the function of limitation and constriction. My work has given me access to the rich and complex multi-lectic nature of our beings and our particular relationship as parent and child.
How did your younger son deal with his brother and the extra attention I imagine he must have received growing up?
The challenges faced by siblings are the least studied and attended to concerns faced by families living with difference. My younger son is an artist and is studying film. He recently made a film that is, in part, about his emotional experience as a sibling. The challenges imposed upon him by dis/ability of an older sibling are not only formative but sadly, life-long: Who will be the one responsible to make sure his brother’s needs and wishes are being met when his father and I are gone? Siblings often have a much more compassionate view of the world along with a more fatalistic view. It’s another kind of purgatory.
Who are your favorite storytellers and why?
I love films like Bill Forsyth’s Local Hero because it tells the story about a community with humor and depicts how differences of all kinds are a part of the fabric of our commonweal.
I love the writing of Marilyn Robinson who also tells stories about difference from deep within experience of her characters who are often people who experienced trauma and mental illness. Difference in her “worlds” is the norm. Her heroes are often the most marginalized people in our society.
And, James Baldwin. His writing, for me, captures the what it means to love in all of its complexity, challenge and depth.
For about 18 years, you were lead to believe that your eldest son “David” was on the autism spectrum, but he was later diagnosed with a traumatic brain injury. Why did it take so long to get the correct diagnosis and what thoughts ran through your head when you found out?
The revelation for me was having a narrative that finally made sense. This diagnosis was, however, not based on scientific evidence (MRIs etc.) but on a careful examination of the history and presentation of symptoms. In short, an educated guess. But, in the end, truly, the terms and words become meaningless.
The night I performed at The Moth a physician in the audience came up to me and told me that the diagnosis offered by the Psychologist in the story was accurate (based upon their work) and that this notion of a TBI (Traumatic Brain Injury) masking as autism spectrum may be true for many people.
What was your son’s reaction?
David will still tell people that he identifies as living on the autism spectrum because it is a shorthand, a thing that people can understand. Explaining what an anoxic head injury is or can do is just too many words, and too much information.
How old is he now and how is he doing?
David is 24 years old an honors student in community college studying liberal arts. He’s truly one of the happiest people I know.
What is your super power?
My super power, according to my husband and children, is my ability to press my point, which comes with a sense of courage, I suppose.
What did it mean for you to be able to share your story on The Moth stage? What did you want people to take away from your story?
It meant so very much to me to be able to tell this story on The Moth stage. It was humbling to stand on stage with other community members and tell stories about living with or loving someone with difference. It reminded me that we are all living with something, first and foremost, with each other.
What advice would you give to parents who are trying to get help for their special needs kids?
Talk to other parents and share resources. We are living in times where people are afraid to share for fear of losing what they have. We rise together.
What are you most proud of?
I am proud of my strength and my kindness both of which are qualities that life experience has cultivated in me.
Please finish this sentence: Storytelling is important because…
…because even research shows us, listening to stories and telling them literally heals or repairs the brain. It also helps us move closer to each other. Storytelling, of the kind supported by The Moth, opens hearts and moving closer to each other is the best thing we can do in life.
For more from Maria, go to: www.psychologyarts.com/topics/categories/disability