Diagnosis and community: an addendum

Last week, I came out from the spectrum in my op/ed article.

When I was diagnosed in high school, material I’d read said my neurological condition – Nonverbal Learning Disorder (NLD) – is considered a close relative of Asperger syndrome. Asperger’s is now classified under the umbrella term of autism spectrum disorder.

An informational page for Michigan Medicine at the University of Michigan states, “AS [Asperger’s] and NLD are generally thought to describe pretty much the same kind of disorder, but to differ in severity – with AS describing more severe symptoms.”

However, since writing the article and finding more literature on my learning disorder, I’ve learned my brain is a lot more controversial than I’d realized at the time.

Diagnoses in the medical community can be surprisingly contentious and ambiguous – underscoring the importance of solidarity among people with learning disorders now more than ever.

NLD is defined as a difficulty in understanding expression that cannot be conveyed verbally, visual-spatial/motor issues – which is why I have the handwriting of a serial killer – and strong verbal knowledge. Researchers largely agree the disorder shares similarities with autism, particularly with respect to difficulties in processing nonverbal cues, to such an extent that the two disorders are easily confused.

There’s something intensely validating about having a name to put on your symptoms.

However, there’s growing debate over just how similar they are, and where NLD belongs in relation to the spectrum – whether it should be considered essentially the same, go on the distant end, adjacent to it, away from it altogether, or if it should just go to its room and try to cover its ears while neurologists go on with their bickering.

A 2013 study published in the Psychiatry and Behavioral Health Learning Network found NLD and autistic patients had differing brain pathway responses, suggesting some distinction. However, debates still ensue, and from the various sources I’ve read, it’s hard to find a definitive consensus.

According to an article in The American Journal of Human Genetics, autism spectrum disorder itself is used as “a catch-all diagnosis for a set of poorly understood neurodevelopmental disorders” – in other words, knowledge is lacking more than many people may realize.

As a fairly new diagnosis, the medical community has been riddled with confusion and is slow to catch up in addressing people with NLD. They receive no federal assistance and almost no widely known awareness campaigns to speak of, compared to other learning conditions.

Despite neurological studies showing clear structural brain differences in patients with NLD, such as the aforementioned 2013 study demonstrating distinctions in the parts of the brain that connect the right hemisphere with the left, some people even argue against its mere existence.

With all the controversy over how to define and address it, the disorder has also yet to be classified in the DSM-5, the most popular diagnostic manual in psychology. However, it is still used in many educational and therapeutic contexts.

I am not a medical professional. I want to be understood, not serve as a lightning rod for medical debate – but with all the varying discussions swirling around, it’s hard not to feel a little overwhelmed.

The study of the mind has had a profound impact on contemporary culture, but in the grand scheme, it’s a relatively new field of research. There’s still a lot we don’t know about how to help people with learning disorders, why people develop them, or how the brain works in the first place. There’s a reason psychology gets its own department, after all.

Research is gradual, and discussions can change significantly in the span of only a few years. It takes time for the medical community to reach a consensus.

However, anyone is capable of being compassionate and understanding.

Community isn’t just important for awareness or activist purposes. Coming together in solidarity of shared experiences is an essential means of feeling heard, accepted, and appreciated.

Opening up about how your mind works can make a world of difference in voicing the previously inarticulable. It can certainly be a very vulnerable experience.

That said, if we want people to be more understanding – and to be understood ourselves – we have to be willing to share our struggles using our own voices.

A diagnosis is important, but it has limitations – we need to build a sense of community, too, in order to reduce stigma.