There are many different terms for autism and sometimes it can be confusing and makes us wonder if we are talking about the same thing, if we use a different term. Ultimately, it is up to use which term you feel most comfortable using. I have my personal preference too which may be different from yours and I will mention my own preferences as part of this blog.
Today’s blog aims to explain each one and help us realise that all the terms are referring to the same neurological condition.
Autism spectrum disorder and Autism spectrum condition
Both terms are currently in use and I have seen them written on many diagnosis letters over the past years. I think this is down to personal preference which one you use. Disorder could be seen as describing something being ‘wrong’ with the autistic person. There is a move away from autism being a deficit and a move to it being viewed as a difference. This ethos is promoted by the Autism Education Trust and their key message of ‘difference not deficit’.
My personal preference is autism spectrum condition. From experience, ‘disorder’ I have seen relates to how the environment meets the need of the autistic child or young person. Sometimes, that is not easy to get right and may take a range of reasonable adjustments to meet the need. It is not the person themselves who are ‘disordered’. But that is MY personal opinion.
Asperger syndrome is no longer a stand-alone diagnosis although it was widely used when I was a class teacher, especially as I worked in mainstream schools. Many people have this diagnosis, no new ones are being made but it is a term you may use or have heard. This term refers to Hans Asperger who published his first paper in Austria in 1944, which focused on a group of children very different from those being studied by Leo Kanner in America at a similar time. Asperger noted the features such as naïve and inappropriate social approaches to others, intense interest in particular subjects, good grammar and vocabulary but monotonous speech used for monologues rather than two way conversations, more motor skills, specific difficulties in one or two subjects and a marked lack of common sense. Due to the events in World War II, it took more than 20 years for his work to become known outside of Europe. In the UK in the 1970s, Lorna Wing and Judith Gould concluded that Asperger and Kanner had both identified two sub-groups within the same condition, which affects social interaction and communication.
Although this term does not stand alone anymore, it is an accurate description of many children I help adults to support in mainstream schools.
Low functioning autism and High functioning autism
These terms refer to the two sub-groups identified Wing and Gould in the 1970s. Currently, these terms are being questioned by the autistic community themselves.
Low functioning autism refers more to the group identified by Leo Kanner and high functioning autism refers to the group identified by Hans Asperger. But what does this actually mean?
Here are some examples:
Carly Fleischmann – Canadian YouTuber, unable to speak, but has interviewed some A list Hollywood stars …. Would you consider her ‘low functioning’? Maybe, without the use of augmented speech, then how would she express her ideas? On listening to the interviews, she has a witty and cheeky personality, which she uses in a clever way.
Anxiety and depression can be more common in people with ‘high functioning’ autism. If anxiety is caused by meeting people, having to go outside of the house, carry out social tasks that are seem as ‘normal’, how high functioning is this personal socially?
So the boundaries of these terms are not so clear cut as it may first appear. Some of the autistic community are preferring ‘autism’ or ‘autism and additional needs’. The additional needs can include ADHD, dyslexia, dyspraxia, learning disability, OCD to name a few.
When delivering a consultation, I try to explain this concept if someone describes a child as high or low functioning. It’s a way to suggest that the outward appearance and presentation of autism may not be that simple and looking at the whole child gives us a better indication of their strengths and challenges.
This links perfectly to the low/high functioning section above. What is ‘mild’ autism? For a diagnosis, a person must fit the criteria – if they fit the criteria, they are autistic and if they don’t fit the criteria, then they aren’t autistic. In addition to this, ‘mild’ in what sense? There will be strengths and challenges in the AET 4 key areas of difference and this will mean that unique person has a unique profile, which will probably be spiky.
Define ‘mild’ autism – I am not sure I can, unless it refers to those who don’t appear outwardly to face challenges. Again, this is MY opinion. I am not sure if this is a good point to include ‘well, we are all a little bit autistic aren’t we? Maybe not …. for me personally, that belittles the autism diagnosis. Again, my opinion.
Autistic child/adult OR Child/adult with autism
I personally changed my own terminology around this after attending an Autism Education Trust Partners conference in 2018. Listening to two very articulate autistic young women explain the implications of ‘with autism’, I made a conscious decision. ‘With autism’ refers to something added on, an appendage. They are not people with something extra added on, like holding a suitcase with autism inside it; they are autistic, it IS them, an integral part of their whole being.
It seemed to me to be more respectful to acknowledge this and, although it took a bit of time, I changed to ‘autistic’ as opposed to ‘with autism’.
Or simply autism and autistic! A lifelong, neurological condition that affects the way someone communicates and relates to the work around them. A condition where the person will have differences in social understanding, communication, information processing and sensory processing.