Autism is a lifelong developmental condition characterised by differences in flexibility of thinking, social communication and social interaction. Many people with a diagnosis of autism have additional diagnostic labels or words that describe their differences and help people to understand their self or their loved one.
Autism is a spectrum. This means that you can fall across a broad range of points along a continuum. At one side of the continuum are severe differences in social communication and perspective taking. At the other side of the spectrum a more neuro-typical presentation is observed with subtle differences in social communication and perspective taking.
Autism is referred to by many different words including Autism Spectrum Disorder (ASD); Autism Spectrum Condition ASC), Asperger Syndrome (AS), Pathological Demand Avoidance (PDA) to name but a few. The DSM 5, which is the favoured tool for classification of a variety of different conditions, uses the term ASD to refer to the autism spectrum. Many research papers are referring to the autism spectrum as Autism Spectrum Condition (ASC). The autism community refer to themselves as Aspies; a person with autism; an autistic person; ASD; ASC and so on. The interchangeable terms can lead to many of us facing confusion in how to refer and interface with the autism spectrum both in person and through our reports, emails or communications. So what do we use?
I am a Speech and Language Therapist. My role involves looking at language, social interaction and social relationships. I have worked in the field of autism for over 10 years and not only have a professional connection, but am also the sibling of a young man with “severe learning disability and significant autism traits.” My, how we have moved on with our terminology since the late eighties when my brother was born and labelled for us all to understand him better!
My training tells me that in order to understand something, we have to have a symbolic representation of the concept or idea we are learning about. Most of us do this through words. We see or hear a word and an instant mental image pops into our head to help us see what it is we need to see in order to understand what someone is telling us. Semantics is the philosophical and linguistic study of the meaning of words. I love learning where words come from; I love using the dictionary or thesaurus to expand my word knowledge and so the question of autism terminology is one that intrigues me.
I work mainly in school settings. In order for my students to access the support that they need, often times a label or word is the best way to support their application for support and services. People see the word “autism” in a report and instantly have a little explosion of semantic understanding. They can better predict what that person will ‘look’ like, how they may interface with the school world and what kind of help they are likely to need to access the learning and social environment of the school. This can be a good thing. More recently I have been working with older students and young adults. Part of our intervention is about better understanding ourselves. We explore the ‘labels’ that each student has and look at what this means, how it affects them and what may be some of the differences that each student within the group has despite sharing the same ‘label.’ Within these activities, I refer to autism as just that, “Autism.” Some students see their word label as a disorder. They dislike that they see the world differently, that they find social aspects of the school environment a challenge, that they just don’t get it like everyone else. To these guys and gals, their autism is a problem. A disorder.
So what do we use? As professionals, think we need to use the terminology determined in the diagnosis manual and so my choice is ASD. In all honesty though, lets try moving away from the label and using a person's name. It feels far better to me that way!