Last week I touched on the terminology used to describe the autism spectrum. This week's blog will explore the topic a little more.
There are many terms used to describe those on the autism spectrum. Leo Kanner first introduced the term autism in the 1940's, and until the early 1980's this was the term used by the small minority of people who knew about the condition. Then Lorna Wing & Judith Gould introduced the idea of the autism spectrum and used the term Autistic Spectrum Disorder (ASD) to describe those on it. This included people with a diagnosis of classic (Kanner's) autism and Asperger Syndrome. Since changes to the main diagnostic criteria in 2013 ASD is the term now generally used in a diagnosis.
Results of a recent study
In 2015 a study was carried out by the National Autistic Society and 2 other organisations looking at the terms used to describe autistic people in the UK. Almost 3500 people were surveyed from the autism community, including people on the autism spectrum, their families and professionals who support them. Surprisingly, the study found that there is not one single preferred term.
What the study did highlight is need to move away from negative terms such as 'disorder', which belongs to the medical model of disability - looking at what is 'wrong' with a person and searching for a cure. Many people who are on the autism spectrum see their autism as a difference, just part of their personality rather than something that is wrong with them. This is one of the responses from the survey:
“Autism is just another way of thinking, not some sort of disease that one can catch”
You may have heard the term 'neurodiversity', well, the neurodiversity movement follow the social model of disability. They see autism as a form of diversity found throughout human society for example, differences in race, sexuality, gender, ethnicity or culture. Have a look at this video in the 'Ask an autistic' series which explains neurodiversity as well as another term you may have come across, neurotypical.
There are also lots of discussions going on about whether to use people-first language, for example 'person with autism', or put the diagnosis first as in 'autistic person'. You can learn more about this by listening to a podcast which discusses the research, and there's an interesting summary of the study here. The reference for the full article is in the Useful Resources section below.
The study did find that most groups surveyed accept the term on the 'autism spectrum' and this is the term generally adopted by the National Autistic Society. This will be used throughout our training and in the blog, but remember that to provide a person-centred approach to supporting someone on the autism you should ask them their preference.
Useful resources
As a Cumbria student you can click here to access the full article mentioned above
Kenny et al. (2016) 'Which terms should be used to describe autism? Perspectives from the UK autism community', The International Journal of Research and Practice, 20(4), pp.442-462.
There's also a book available in the library which I found useful to dip in and out of:
Silberman, S. (2015) Neurotribes: The legacy of autism and how to think smarter about people who think differently. London: Allen & Unwin. Next week I'll share an excellent TED talk by Silberman.
Another TEDx Talk I came across explains neurodiversity brilliantly. It's by Elizabeth Wiklander called 'Neurodiversity - the key that unlocked my world'.
Contact
If you have any queries or concerns over the Summer you can contact me directly at lesley.english@cumbria.ac.uk
For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk
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