By Seana Smith, co-author of the Australian Autism Handbook, Edition 1
If you are new to the weird and wonderful world of autism spectrum disorder then you might be finding many of the terms you hear and read confusing. The words autism, Asperger’s syndrome and autism spectrum disorder are confusing in themselves!
What do these terms mean and are they all the same condition?
In short, the answer is yes, they all mean the same thing, roughly.
It’s just that the names have been changing as our understanding of this complex developmental disorder has improved.
These days, autism and Asperger’s syndrome are now considered the same disorder and all come under the umbrella term ‘Autism Spectrum Disorder’.
However, just to befuddle us, this does not mean that all children and adults now officially diagnosed with autism spectrum disorder have the same symptoms. Nor are all cases caused by the same combination of genes and/or genes and environment.
Even more importantly, there is no uniformity in treatments for all people ‘on the spectrum.’ Each child or adult needs an individualised educational and sometimes medical treatment plan. This is vital.
So why are three different names in common use?
The term autism was first used in the early 20th century by a Swiss psychiatrist Eugen Bleuler as a description of the social withdrawal of his patients with schizophrenia. The Greek word ‘autos’ means self.
Leo Kanner used the term early infantile autism in a 1943 paper to describe a group of patients with similar symptoms of social withdrawal, communication difficulties and obsessions.
The term autism was used until the 1980s when Lorna Wing re-discovered and publicised the work of Hans Asperger who had studied a group of children in the 1940s. The term Asperger’s syndrome began to be used to describe children and adults who have normal IQ and language skills alongside the social and communication deficits of autism.
Over the next 30 years, it became apparent that autism is a spectrum disorder, affecting people in many different ways and with a wide degree of severity. In the latest version of the Diagnostic and Statistical Manual, DSM 5, there is now only one condition described: Autism Spectrum Disorder.
The terms ‘autism’ and ‘Asperger’s syndrome’ are still used very widely. In general, people use autism for individuals more severely affected and Asperger’s for those with normal language and IQ.
To make things even more confusing, in DSM 4 there was also a diagnosis of PDD-NOS meaning Pervasive Developmental Disorder – Not Otherwise Specified.
When my son was diagnosed more than 20 years ago, PDD-NOS was the term that best described him, but we never used it. The paediatrician used autism spectrum disorder and people knew vaguely what it meant.
These days, it’s best to use the term ‘autism spectrum disorder’ as that is the official and up-to-date diagnosis. It also reflects the spectrum nature of the disorder and is less prescriptive than the older and more rigid terms.
So there you have it, let’s talk about autism spectrum disorder, ASD and being on the spectrum. And let’s hope that, within this umbrella term, each individual with their very own strengths and personality will always be more important than any label.
Seana Smith is a Scottish-born writer, blogger, autism parent and co-author of the first edition of the ‘Australian Autism Handbook’.