"What Are You Trying to Tell Me?" Neurodevelopmental Disorder Care Across North Carolina
Our lives are measured in the milestone. As infants, it’s when we make out the word “mama” for the first time to convey a need. As children, it’s when we make it to the end of the street on our bikes, only to look back and realize our dad let go some houses before. As teenagers, it’s when we make social connections – from our first real friendships to our first steady relationships. For many, these milestones bring warmth to the home. We decorate our walls with pictures that capture these moments and reminisce on them in awe as we grow. For others, they offer a glimpse into what’s happening beneath the surface. Rather than watching their child do something right, parents are starkly shown what they do wrong – or simply, what they don’t do at all.
Autism and neurodevelopmental disorders exist on an ever-changing continuum of social constructs. In its classic form, an autistic individual was once perceived as someone who was non-verbal and displayed atypical behaviors like hand flapping. As diagnostic evaluation systems are rewritten and updated, diagnoses are constantly being changed and one diagnosed individual appears far different from the next as far as their capabilities and challenges stretch. Literature surrounding disorder origin is still sparse, making diagnoses and intervention tactics difficult to define for educators, clinicians and affected individuals themselves.
As a first-year graduate student, I attended a lecture by journalist Eric Garcia. He’s a reporter in Washington where he writes on politics and policy. Garcia also happens to be autistic. As he wrapped up his lecture and opened the floor to questions, I raised my hand. I asked him how to approach interviewing someone with a disability – that is, how to capture their inner world and how it differs from mine without making a story out of those differences. He gave me good advice. Make the interviewee comfortable. Acknowledge their challenges and how those challenges shift an interview landscape. He ended – either my question or the lecture, I can’t remember which – with a personal anecdote. After speaking with a father who has an autistic son, the father told Garcia: “I wouldn’t change my son for the world, so I’m going to change the world for my son.”
My interest in this topic sparked my first year in graduate school. In one of my journalism classes, we had to take a recent scientific study and use it as a launching point to write a story. I came across a study on autism and how scientists believed they could detect it earlier than once thought. When I reached out to parents to learn about what it was like to have an autistic child, a common theme emerged: their children were written off.
In the pieces ahead, I explore this topic from the stand-point of personal stories during different stages of life – infancy, childhood and adulthood. What does it mean to be diagnosed early in life as opposed to later? I share the stories of individuals throughout North Carolina and the unique challenges they’ve endured in getting others to recognize their disorder, pinpointing their diagnosis, and seeking out services that will improve their quality of life. This is a small fraction of the population, and each state has different processes in store when it comes to disability rights. These personal narratives, however, ought to triumph this conversation.