Autism has received many labels over the years; an increase in understanding and changes in diagnostic parameters have guided these changes.
The National Autistic Society highlights how our labels follow the terms that are used in diagnosis and can therefore be linked to changes in the most recent diagnostic manual that is used.
Interestingly, in the most recent ‘Diagnostic and Statistical Manual of Mental Disorders’ or DSM-5 (name controversial in itself) a number of previously defined disorders have been grouped into the singular ‘Autism Spectrum Disorder’.
This has seen Asperger’s Syndrome, Rett Syndrome, Pervasive Developmental Disorder and Childhood Disintegrative Disorder all completely drop off the map. Whilst this has its benefits, which I won’t delve into here, it means that the variety of experiences of individuals diagnosed with ‘Autism Spectrum Condition’ will differ hugely.
It also calls into question how we can descriptively portray the variety of differences and individual presentations of people who are all given the same label.
This is not the only difficulty however; there is also a great deal of controversy regarding how to refer to someone with an autism diagnosis. The debate can become somewhat contentious, with multiple variants of ‘Autism Spectrum Disorder’ being used by individuals themselves, practitioners, researchers, families and the public.
Autism Spectrum Condition versus Autism Spectrum Disorder
These two variants appear to be used interchangeably in research, health services and the media. Some people just don’t see the difference, others don’t mind which term is used and for others it can be quite a bug bare.
Autism Spectrum Disorder (ASD) seems to be most widely used and is the term used in the DSM-5. However, many people (including myself) prefer to use Autism Spectrum Condition (ASC). This is primarily because of the negative connotation that disorder conveys.
It implies that an the person is ‘disordered’ in some way. Who are we to say that experiencing and perceiving things in a different way is ‘disordered’?
The use of condition on the other hand, highlights both the difficulties and the strengths that individuals with autism may encounter. The differences/symptoms of someone with autism may not amount to an experience that would be considered impaired or ‘disordered’.
Someone may have sensory differences for example, or may have differences in the way they socially interact but they may well not be severe enough to be considered disordered. Other professionals are in agreement with this premise. For example, Baron-Cohen (2008) argued that condition is more compatible with the notion of autism as a spectrum.
Autistics versus People with Autism
Autistic or Autistics is a particular bug bare of mine. Whilst I see that autistic can be used descriptively and do understand that some people with autism prefer this term, I don’t think it feels right to use it to refer to another person and certainly not a group of people.
If you haven’t got bored about me banging on about the heterogeneity of autism yet, then here is a little bit more for you. Everyone with autism is different. Grouping such a varied group of individuals by referring to them as ‘autistics’ is not helping the movement to demonstrate how wide ranging and diverse the condition is.
I prefer ‘a person with autism’. It may be long winded but it highlights the individual as a person first. The person is not then defined by the condition.
However, others with autism have stated that this can disassociate the person from the autism, which it has been argued, is unnecessary. It has been said that autism can be a part of the individual and helps to make up who they are, they don’t need to be disassociated from the condition as the connection with autism it does not been that they are deficient.
Aspie is a term used to refer to people with Asperger’s Syndrome. It seems to be used most often amongst those with the diagnosis, referring to themselves or friends/ family members in an affectionate manner. It could be perceived as strange coming from someone unfamiliar and not on the spectrum or unprofessional if it were used by a professional.
Some argue that the term is infantile and ‘cutesy’, whereas others recognise the mere function of shortening a word, which is incredibly popular with my generation at least!
Beyond the Label
So, what is the conclusion here? Well, there is no definitive way to refer to someone with autism; it does depend on the context, who is using the term and personal preference.
There are evidently terms that I, as a professional, would avoid using to prevent portraying any negative connotations and to demonstrate my approach to the condition. For example, using ‘condition’ and a ‘person with autism’ to demonstrate recognition for a person who is not defined by their condition.
It is important that we see beyond the diagnosis to the individual’s unique strengths and challenges. This will enable greater awareness about the diversity of autism and ensure that our preconceptions and expectations, based on the label, do not shape how we interact.
A person is a person first