Diagnosis: What I Appreciate and What I Reject

 As a child, I was not known for my flexibility. I was a competitive gymnast but my hips never flopped open into a split. Instead I was known for my strength, my commitment, and my fearlessness. 

I was also not known for my mental flexibility—I was the explosive kid in my household, the one who always needed to choose the restaurant, who got so frustrated she melted down, who got carried out of public places screaming.

UNIQUE EXPLOSIVE CHILDREN

I recognize myself in my explosive children. They each uniquely express their explosions as they struggle to manage the demands of daily life. One implodes into silence and withdrawal. One explodes in aggression and anger. One explodes in sadness and regret. 

As I face the reality that I have three explosive young kids, I join an online support group of other parents whose children are like mine. I recognize myself and my kids in so many stories. I am told over and over that it is good I am learning how to better support them while they are still young. I hear of teenagers restrained, holes smashed in walls, and police needing to be called. Many of these explosive children have been diagnosed ad nauseam, and those lists of letters still aren’t helping lead their caregivers toward healing strategies. 

BORN LIKE A SYMPHONY

My kids are not those extensively diagnosed kids. In fact, I hardly have words to describe their wondrous “other-ness.” To me they are each whole, so different from one another and from any other human who has walked this earth. They are a complex tapestry of stories to which I have had a front row seat, too many stories to remember or name but that shimmer just outside my conscious memory. 

I believe my kids were born like a symphony. They are a constellation of instruments, some instruments they were born playing masterfully, making lovely music that is a joy to hear. Others squeak or are out of tune. Some gather dust from never having been played. They pick up new instruments and try them out, like a 3rd grader with a brand new recorder, ready to play at all hours of day and night. And I am the orchestra conductor. I say “a little more tuba,” and “let’s get everyone playing on the same beat!” I want them to play their own song, with their own instruments, in their own way. And then I want to relish in the music, the unspeakable joy that is their life. This is my deepest wish as a parent.

WHY I DON’T DIAGNOSE MY KIDS

At this point, we have many struggles, but we have no diagnoses. I can critique diagnoses all day long. Diagnoses are formed on the medical model of disability. In this model, there is an ideal human (a white western heterosexual able bodied land owning male) and from this ideal, we can all measure our deviation. In this model, some of us are too different and require a name for our constellation of difference, a diagnosis of a disorder. Disordered behaviors were classified and categorized with vastly increasing specificity and number over the period of the development of the Diagnostic and Statistical Manual of Mental Disorders (DSM), first published by the American Psychiatric Association in 1952. Recently updated to the DSM-V in 2013, this new volume makes significant changes to diagnostic labeling, most famously creating one central title “Autism Spectrum Disorder” from the cluster of five distinct diagnoses that existed in the prior manual.

I pull away from this model instinctively. I have always felt different, and I wonder sometimes if there is an ideal version of me out there that I cannot achieve. I hide my difference, and I hide the effort it takes to present some approximation of this ideal to the world. I do not want this hiding and striving for my children. I want them to shine with radiant beauty, exactly as they are. 

I want to teach them to shine—to actively instruct them in ways to resist the world’s efforts to dim their radiance. 

This is a key part of the spirituality I wish to gift them, and the fertile ground for developing true activism. “No justice, no peace!” I yell on my protest marches. The contemplative in me whispers a prologue: “No self love, no justice, no peace.”

DIAGNOSIS SHIFTS TO IDENTIFICATION 

In our home, we reinvent diagnosis as identification; for us, it is about clarity, community, and advocacy. Sometimes you need a name to be able to advocate. We discover that my oldest child Owen cannot stand the sounds of others eating. The chews and munches and scrapes of utensils make him jumpy and irritable at the table and consistently destroys the peace and joy we want to create in our shared family experiences. We allow him to eat where he chooses and begin to use our table for vigorous family Uno games instead. I see this sensitive child blossom without these incessant demands to tolerate and regulate under the onslaught of sensory hell. I see the table from his eyes—never a source of love and connection, as it was intended, but a place of suffering. I am relieved that we have reinvented this space around joy. I see Owen’s uniqueness and struggles more clearly than ever before. 

Eventually we pursue a name for this uniqueness, misophonia, or auditory processing disorder. Both names apply. We discover this name after changing our lives to better match this unique sensitivity. My child is thrilled that there is a name for this and that others experience it too. Owen knows that this uniqueness brings struggle, and he also knows that it binds him to a community who gets it, and that we will change everything to make life easier for him. 

HOW A DIAGNOSIS LEADS TO ADVOCACY

When Owen is in school, we use this diagnosis to advocate for him to eat far apart from others, so that his ears are protected from these overstimulating sounds. At home, we talk openly about sensitivity and struggle and name the sounds that set Owen off, beyond the sound of chewing. With the trust of his family behind him, Owen becomes brave enough to own his disability and to actively recreate our world to be more accommodating. 

While I pull away from the diagnostic institution, my heart still breaks for the nearly 40 years that I lived without an autism diagnosis. I grieve every one of the 13,870 days I woke up without the key to unlock my experience of the world. I appreciate that a diagnosis gives a name to an experience of the world. I am grateful that diagnoses are a shorthand for finding your people, for connecting with others who view the world through a similar lens. In my case, I pursued a clinical diagnosis because I wanted that confirmation of my high-masking presentation of autism as still legitimate, still valid. I was afraid to stand on my own self-diagnosis without the medical establishment behind me. After many years of owning this identity, will this diagnosis mean so much? Hopefully not. Ultimately, it is my experience of the world that matters. It is my identification that transformed my life. But in my season, I needed the confirmation of a medical diagnosis. 

The question of diagnosis is a live wire in the autism community, but I dream of a day when a person is trusted implicitly that they know their own mind and their own experience of the world. I dream that self-diagnosis would be prized by the medical establishment and by a supportive wider community. I dream that we will all be seen as our own symphony, and that our goal will be to play our own song, with our own instruments, to create beauty in our own way.