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1 Terminology
1 Terminology
In this section, you will explore the following areas:
It is important to explain the choice of language and terminology used in this module and the Autism Toolbox because the complex nature of autism gives rise to a range of personal and professional perspectives. Although this means that it is not easy to find a common language that reflects the views of the various groups, what we have tried to do is reflect the diversity of the community in a positive way.
1.1 Autism as an identity
Many different terms are used to describe autism and there is no agreement within the community of autistic people, parents and their broader support network or the wider community on the best term to use.
Within the wider community, there seems to be most consensus for the terms ‘autism’ and also ‘on the autism spectrum’.
Within the autism community, many autistic people prefer the use of the term ‘autistic’, for example, autistic adult. The concept of autism spectrum disorder (ASD) has been rejected by some within the autism community because the term 'disorder’ presents the view that autism is a disorder; autism represents a difference not a deficit.
Within the education community, it is unusual to use a term which defines a diagnosis or identification before the words ‘learner’, ‘child’ or ‘young person’. For example, we would not encourage the term a ‘physically or mentally disabled learner’; we would instead encourage the learner to be understood as an individual first before any differences or difficulties. For example, ‘a child with autism’. However, some people within the autistic community have requested the term ‘autistic person’. The module therefore uses either the term ‘autistic learner’ or ‘autistic children’.
If the child, young person or family express a preference for a particular term, this should be respected.
1.2 Neurodiversity
Neurodiversity is a relatively new term, thought to have been coined in the 1990s by Judy Singer (an autistic individual, parent of an autistic child and Sociologist). It was originally used by the autistic community who were keen to move away from the medical model and dispel the belief that autism is something to be treated and cured rather than an important and valuable part of human diversity.
The idea of neurodiversity has now been embraced by many other groups, who are using the term as a means of empowerment and to promote the positive qualities possessed by those with a neurodevelopmental difference. It encourages people to view neurodevelopmental differences such as autism, dyslexia and dyspraxia as natural and normal variations of the human genome. Furthermore, it encourages them to reject the culturally entrenched negativity that has typically surrounded those that live, learn and experience the world in a particular way that is sometimes perceived as different.
The whole of society is neurodiverse. Diversity is the trait of a whole group not of an individual. It is estimated that around 1 in 7 people (more than 15% of people in the UK) have neurodevelopmental differences, including autism, which are observed when they learn and process information in a particular way.
Autism often co-occurs with other neurodevelopmental differences, including:
- attention deficit hyperactivity disorder (ADHD)
- developmental coordination disorder (DCD), also referred to as dyspraxia
- developmental language disorder (DLD)
- epilepsy
- foetal alcohol spectrum disorder (FASD)
- intellectual disability
- Tourette’s and tic disorders
- specific learning disorder/differences e.g. dyslexia, dyscalculia.
1.3 Disability
What is disability?
It is helpful to understand what the term disability means and appreciate the sensitivity of the term and the range of associated feelings that learners and families may have. For example, some autistic people are very clear that they do not wish to be viewed as disabled, even if they may meet the criteria highlighted below.
A person has a disability according to the Equality Act 2010 if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.
This means that, in general:
- the person must have an impairment that is either physical or mental
- the impairment must have adverse effects which are substantial
- the substantial adverse effects must be long-term
- the long-term substantial adverse effects must be effects on normal day-to-day activities.
All of the factors above must be considered when determining whether a person is disabled.
Disability models
There are a number of ‘models’ of disability which have been defined over recent years. The two which are most frequently discussed and commonly used are the ‘social’ and the ‘medical’ models of disability; other models have evolved and developed from these two models. This module and the Toolbox focuses on these models.
Activity 2
- Watch the Social Model of Disability and the Social Model Animation which illustrate the social model of disability.
- In your Reflective Log, consider the questions:
- a. In your setting, what barriers are experienced by learners who are disabled?
- b. What adjustments can be made to ensure that learners with disabilities are able to participate in all aspects of your setting?
The social model of disability and the Scottish context for education support the vision for inclusion in Scotland for all our learners, both disabled and non-disabled. Anticipatory thought is given to how disabled people can participate in activities on an equal footing with non-disabled people. Certain adjustments are made, even where this involves time or money, to ensure that disabled people are not excluded. For example, ensuring buildings, the curriculum and communications are accessible.
In terms of autism, the social and medical models overlap. While no support should be diagnosis dependent and should be timeously provided, understanding of support needs can be enhanced by diagnosis. Section 2 of this module provides an opportunity to explore the Scottish ‘needs led’ system, in which all children and young people are entitled to support with or without a diagnosis.
Research evidence from diagnosed individuals and families indicate a preference for timely diagnosis. The reality is that diagnosis helps with access to the most relevant information and support now and in the future.
Please note that education staff in Scottish educational establishments do not assess and determine if an autistic learner has a disability. This is usually done by health colleagues and should be in partnership with the family and the educational setting.