A view of autism from along the spectrum

Language provides us the means to communicate ideas, build and share a common vision, and grow and expand our knowledge and understanding. It can also limit our ability to do all these things.

Some of the language we use in discussing Autism Spectrum Disorders drives me nuts. The topic is too important for us to settle for such lousy words and terminology. The language that really bugs me is listed here. I generally try to be positive on-line, but this is a rant, so don’t expect me to offer up any suggestions.

Autism – The difficulty with this word is figuring out whether someone is using it to describe the spectrum of disorders or the particular disorder that has been called autism for many years. While it’s a great term to describe the spectrum to someone who doesn’t know it, it also dilutes the meaning of the specific diagnosis of autism. We need two terms here, not one.

Pervasive Developmental Disorder – This term may have very specific clinical meaning, but it’s a terrible phrase for a layperson. The words carry the connotation of “this is complex, you won’t understand.” Its likely to cause eyes to glaze over.

Asperger’s Syndrome – This one works for me even though most people can’t get the pronunciation or spelling down. It’s at least identifiable as a general ‘place’ on the spectrum. By naming it after a key researcher, it at least follows a convention that’s recognized in many fields.

Atypical Autism – I hardly no where to start with this one. I have yet to hear of any case of autism that seems ‘typical’. Since we often refer to non-autistics as ‘typical’, this term could also be represented as Atypical non-typicalness. Since we’ve made the spectrum broader (by changing diagnostic criteria) over the past 20 years, this term really doesn’t have much use any more.

High Functioning Autism – I have a love/hate relationship with this term. On one hand, its simple, easy to understand, and an attempt to represent something much more important than diagnostic criteria. From that standpoint, it’s one of the few ‘common-sense’ terms that we have. On the other hand, it also leads us to ranking autistics relative to one another in a very subjective way. That’s not helpful when dealing with the multi-faceted presentations of autism. It can lead to overlooking abilities that are not obvious or easily measured.

Pervasive Developmental Disorder – Not Otherwise Specified – There’s no love/hate issue with this one! Here’s a term that is incredibly specific, but only at describing what it’s not. It’s like asking What color is the sky? And getting an answer of: It is a deep color that is not brown, red, or purple. I’ve met quite a few parents that have had professionals arrive at this diagnosis for their child and they’ve felt that it’s not a ‘real’ diagnosis. A different name would make this diagnosis much more acceptable. It would also keep us from using even less meaningful terms like PDD-NOS.

Autistic vs. ‘has autism’ – The difference between these words means a lot to some people. While the difference doesn’t particularly resonate with me, I respect and understand how these phrases can subtely shape our perception of autism. I try to choose which words to use based on the listener or reader. Or, more likely, I’m clueless and don’t pay attention to which word I’m using and likely offend people that favor either term.

Neurodiversity – What a wonderful word! Maybe it’s because diversity has been such hot topic in the work place, but I just knew what this word meant the first time I saw it. This term even speaks to ideas that go beyond the autism spectrum. All of our interactions with others are driven by how our own brains are wired and how we react to how other peoples brains are wired.

Biomedical – OK, you’ll need to figure out on your own whether I included this term to be fair or just to stir things up! It’s really a pretty good word. Sure it encompasses controversial things like chelation, but it also includes pharmacology, genetics, and other physiological aspects of autism and treatment. This word is very worthy of inclusion in our dialogue on autism.