When my son Diego was little, his autism label memorably got us a disability pass at Disney World with magical line-skipping powers. Currently, labels give him access to Department of Developmental Disability funding, Medicaid, Supplemental Nutritional Assistance Program (aka food stamps), Social Security Income, and Section 8 Housing, to name a few.
Add it all up and it’s a heck of a lot of funding, especially when you consider that Diego’s 29 and will get such benefits year after year until he’s 100 years old and moves on to a superior heaven reserved for the pure at heart.
I’m grateful for the benefits Diego derives, directly and indirectly, as a result of his diagnoses, and could care less about stigma at this point. Still, the labels trouble me a great deal for a variety of reasons I’ll try to make sense of in this piece.
Diego’s Mental Disorder Labels
In the United States, the Diagnostic and Statistical Manual of Mental Disorders (DSM), currently in its fifth version, the DSM-5-TR, is the authoritative guide containing descriptions, symptoms and criteria for diagnosing mental disorders.
Diego meets the criteria for three disorders: autism spectrum disorder (ASD), intellectual disability (ID), and bipolar disorder.
Of the three, ASD is my go-to label when talking about Diego’s special needs.
I use ASD not only because it fits Diego, but also because autism has come to be viewed as a difference to be accommodated or celebrated. There’s also the fact that Diego’s communication idiosyncrasies and his life-long intense interests (traits associated with ASD) are, well, endearing and fascinating.
Take Diego’s collection of travel and animal books. The former is so vast he recently moved on to cities because he’d run out of countries. For whatever reason, Diego now needs a book on Stockholm. As for animal books, he just ordered one on Komodo dragons. Did you know they’re the world’s largest reptile and produce venomous saliva? Also, Diego’s big on birthdays, and, who doesn’t appreciate being remembered on their birthday?
Saying that Diego just has ASD, however, is reductive. His communication is likely as impacted by his ID as by his ASD. He can’t converse in a “normal” way because he doesn’t understand the arguments. He retreats into his head not because he’s autistic but because he’s lost in the verbal mumbo jumbo!
I would also attribute unusual aspects of Diego’s speech to his bipolar symptoms. Even with medication, his mood can become elevated and he speaks so fast it’s hard to follow what he’s saying.
The Difference – Disorder Continuum
Another problem with labels is that they draw a simplistic line between disorder and difference, between undesirable and preferred.
When my son was a child, it was generally accepted that curing autism was the goal. Nowadays, many will take issue with the concept of improving (let alone curing) a person’s autism.
Am I ever glad that Diego got lots of therapy and improved however! For one, he learned to ask and answer questions -helpful, to say the least, when you need information or want to connect with others. He learned to tolerate sirens, vacuums, and blenders; to cope with changes in routine; to be perfectly happy to wear a jacket; and to love being in a movie theater. To my mind, all positives.
Bipolar disorder is a whole different story. I’d place the label way at the disorder end of the difference-disorder continuum.
Diego’s manic episodes come with a level of energy so high it’s exhausting to behold. His speech becomes loud and more pressured than the fastest-paced rap. He hardly sleeps and can’t stop talking for two seconds. Movies become the one thing that sustains Diego’s attention, though he must maintain a monotonous running commentary as he watches them.
Living like this is distressing, so much so that I quickly got over my rejection of mood stabilizers. Over the years (nine so far), we’ve done two trials to cut down on the meds without triggering mania. The first time, the opposite happened. Diego’s energy and mood sank; he wasn’t sad, just flat and almost completely silent. It was weird and frightening, so Diego went back on his meds.
“I got my voice back,” he said soon after, the aptest utterance I’ve ever heard.
The debilitating aspects of bipolar disorder notwithstanding, I can’t deny that Diego’s elevated mood is part of what makes him the exuberantly loving person he is. So no, bipolar is not just a “disorder.”
Finally, there’s intellectual disability — out of the three diagnoses, the one that’s nothing but disabling.
Or is it?
Well… It’s not that simple. Diego’s cognitive challenges are indeed disabling in that they impact his independence in this complex world.
Still, Diego’s ID may be one of the reasons he’s wired to appreciate -as opposed to striving for more and more as most of us do. Diego loves Saturday mass with his Abuela as if it took place at the Vatican, and Sunday morning swims with Tia Lole as if the swim was on a beautiful Tahiti beach and not the YMCA.
I have a theory that because of his ID, Diego isn’t as preoccupied as the rest of us with all the what-ifs. His cognition keeps him from endlessly pondering “If A, then either C or B, which could lead to both D and F.”
We often forget that the lines separating mental disorders are largely artificial. Criteria are based mostly on behaviors, not definitive tests (e.g., genetic, blood, tissue samples, and such), and behaviors of various disorders overlap.
It is neither a coincidence nor bad luck that Diego has three mental disorder labels. It certainly makes no intuitive sense that they would be independent of each other. What are the odds, right?
“Comorbid” is the medical term for when disorders tend to present simultaneously in a person.
Many conditions are considered to be comorbid with autism. ID is a common comorbidity; bipolar isn’t. All told autism comes with so many comorbid conditions that very few people are probably just autistic.
To me, the concept of comorbidity is just our way around our categorical thinking. Categories are logical and help us form thoughts, but they are limited.
Diego, for one, has even more comorbidities than just bipolar and ID. He has allergies, gastrointestinal issues, and significant fine and gross motor challenges. These conditions are not mental disorders, but they are part of the whole whatever-it-is thing that makes Diego disabled and/or different.
The Limits of Language
Language is seriously limited in its ability to describe the human mind and to delineate where it crosses the line into the abnormal.
It’s not beyond the realm of possibility that one day we’ll find so many people who, like Diego, simultaneously meet the criteria for what we currently call autism, bipolar, and intellectual disability, that the criteria will be grouped and sorted into a new single mental disorder label.
What might the new label be? How about Autistic Mood Disorder, Bipolar Autism, or even Diego Syndrome? Over time, we’ll debate whether “Autistic Mood Disorder” is on the rise or whether “Bipolar Autism” symptoms should be cured or accommodated.
We’ll wonder what all the people with “Diego Syndrome” were diagnosed with when the label didn’t exist.
Note: Written with Diego’s knowledge and consent to publish.