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This week, my son Jonah, now 19, was diagnosed with epilepsy after suffering a series of myoclonic seizures. These sometimes presented as isolated twitches, other times as clusters of convulsions that would leave him on the floor, unable to get up – not that he didn’t try. Unlike grand mal seizures (which he has also experienced), myoclonic seizures don’t cause loss of consciousness. I would sit with him, urging him to wait until the episodes passed, trying to imagine what he was thinking as he continuously struggled to get to his feet, to pick up his iPad, to control his suddenly uncontrollable limbs.
This makes diagnosis #4 for Jonah, following autism, intellectual disability and bipolar disorder. And while I would undoubtedly impress my friends with neurotypical children by rattling these off, my friends in the autism community may not be so moved. As Disability Scoop reported this week, a new study by researchers at the Centers for Disease Control and Prevention (CDC) “found that over 95 percent” of almost two thousand autistic children “presented with at least one issue in addition to autism,” including seizure, language, sensory, mood and sleep disorders, as well as cognitive disabilities and disruptive behaviors. “On average,” Disability Scoop summarized, “each child had 4.9 of these secondary conditions.”
Let that sink in for a minute: almost five conditions in addition to the core deficits of autism. This astonishing finding raises a question hotly debated among autistic individuals, their families, their providers, and researchers: how meaningful is autism as a diagnosis? In a May 2017 editorial, Simon Baron Cohen drew a line between “autism” and the most common co-occurring conditions: “Some will object that a child with autism who has epilepsy is not an example of neurodiversity but rather he or she has a disorder. And they are right. Epilepsy is a sign of brain dysfunction and causes disorder (fits) and should be medically treated. But epilepsy, while commonly co-occurring with autism, is not autism itself. Others may say that a child who has language delay or severe learning difficulties is not an example of neurodiversity but has a disorder, and I would support their demands for treatments to maximise the child’s potential in both language and learning. But again, although commonly co-occurring, these are not autism itself.”
“Not autism itself”? What does it say about the disorder as articulated by one of its most prominent investigators that only 5% of those diagnosed with autism have just “autism itself”?
It seems clear we need to attend to the phenomenology of autism – the entangled symptoms and diagnoses that can no more be separated out than the ingredients of a cake can be recovered once they’ve been mixed. This is not to say that we shouldn’t treat those individual symptoms – of course we should. Rather, it means that we need to stop pretending that autism can be reduced to a diversity like homosexuality that only impacts functioning because of societal intolerance – because, as the CDC findings demonstrate, this is only the case for a handful of autism unicorns.
As we anticipate Autism Awareness Month in April, it’s imperative to ask what, exactly, we want the greater public to be aware of. Recent media portrayals of autism, such as the protagonist of The Good Doctor, reify this unicorn narrative. As we struggle with definitions, treatments, service provision and research priorities, our national discourse must honestly reckon with these extraordinarily common symptoms and conditions – including, but by no means limited to, the intellectual disability, communication impairments, mood instability, aggression, self-injury and seizures that have been central to Jonah’s lived experience of autism.
