Understanding Autism – Terminology

What language should we use to describe autism and autistic people?

It is important to explain the choice of language and terminology used in 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.  

Select here to access the Professional Reflection and Planning Tool (Understanding Autism) for this section. 

Further reading and information: 

Different Minds | Autism Scotland 

In partnership with specialist bodies, the General Teaching Council for Scotland has published a series of professional guides focussing on additional support needs, including neurodiversity and autism:

professional-guide-understanding-neurodiversity.pdf (gtcs.org.uk) 

professional-guide-meeting-needs-autistic-learners.pdf (gtcs.org.uk) 

Autism as an identity

Many different terms are used to describe autism and there is no agreement within the community of autistic people, parents/carers and families 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’.    

Many autistic people have expressed a preference for ‘identity first’ language,  for example ‘autistic person’ rather than ‘person with autism’ (usually referred to as ‘person-first’ language).  Some members of the autistic community also choose to self-identify as having Autism Spectrum Conditions (ASC) . The concept of Autism Spectrum Disorder (ASD) has been rejected by many within autism community because of the term ‘disorder’  conflicts with the understanding that  autism represents a difference rather than a deficit. Select the link to view a blog which explores terminology: https://dart.ed.ac.uk/autism-language 

Within the education community  until recently it has been unusual to use a term which defines a diagnosis or identification before the words ‘learner’, ‘child’ or ‘young person’.  Instead, the learner is understood as an individual first before any differences or difficulties, for example, ‘a child with autism’. In line with the move within the autistic community towards use of ‘identity first’ language, this toolbox will use the terms ‘autistic learner’ or ‘autistic children and young people’.    

If the child, young person or family express a preference for a particular term, this should be respected. 

Why is the word ‘Spectrum’ used? (click here)

The word spectrum has been used to emphasise the variation amongst autistic people, with individuals experiencing  a unique pattern of strengths and challenges.  However, it is important to note that autism does not present on a continuum. Autistic people have a range of abilities and will present differently depending on developmental stage and sex. Each individual may require varying levels of need for support at different times throughout their life.

Diagnostic labels (click here)

Understanding of autism has developed considerably in recent years. Autism is a lifelong neurodevelopmental difference, affecting the way a person communicates and interacts with others, how information is processed and how the person makes sense of the world.     

Within the NHS in Scotland, practitioners are guided by the Scottish Intercollegiate Guidelines Network (SIGN) to ensure practice is safe and evidence based.  Based on the SIGN guidance, a diagnosis of a neurodevelopmental or mental health condition is made following adherence to two major international diagnostic classification systems Statistical Manual of Mental Disorders 5th edition (DSM 5) or International Classification of Diseases, version 11  (ICD 11).   

These two main diagnostic manuals are used in the UK as recommended in the SIGN Guidelines 145. The latest edition of the DSM-5 (2013) moved away from a list of subtypes of autism (such as Asperger Syndrome) to one diagnosis referred to as  ‘Autistic Spectrum Disorder’. The other main manual used in the UK, ICD-11, updated in 2019, also moved to one diagnosis, mirroring the move in DSM-5.  

As research and understanding of the nature of autism progresses, it is increasingly recognised that what were previously thought of as distinct conditions (subgroups) actually describe manifestations of autism. Recent diagnostic criteria now includes a much broader group of people fitting the diagnosis of autism and has have moved away from subgroups for example; 

  • Asperger’s syndrome 
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDDNOS) 
  • Semantic Pragmatic Disorder 

Previous terms placed the ‘problem’ within the child, however we now understand that there is a dynamic relationship between the individual and the environment and that challenges experienced by the individual should be understood in the context of the physical and social environment. Establishing full understanding of impact of the social and physical environment is a better way forward.  

Further information about identification of need and diagnosis can be found in the ‘Assessing and Monitoring’ section. 

Pathological Demand Avoidance (PDA) (click here)

What does PDA refer to?

The term PDA was introduced in the 1980’s to describe some children and young people who presented with social and communication disorders. These individuals were thought to have more resistance to following social expectations, to be socially manipulative and to have better play skills than the majority of children and young people diagnosed with Autism, using the diagnostic criteria available at that time. 

Our understanding of the wide spectrum of Autism Spectrum Disorder (ASD) has developed considerably since the term PDA was introduced. Autism is a lifelong neuro-developmental difference meaning it is a condition that affects the development of the brain. Autism affects the way a person communicates and interacts with others, how information is processed and how the person makes sense of the world.    

Is PDA a diagnosed neurodevelopmental condition?

Within the NHS in Scotland, practitioners are guided by the Scottish Intercollegiate Guidelines Network (SIGN) to ensure practice is safe and evidence based.  Based on the SIGN guidance, a diagnosis of neurodevelopmental or mental health condition is made following adherence to two major international diagnostic classification systems Statistical Manual of Mental Disorders 5th edition (DSM 5) or International Classification of Diseases, version 10 (ICD 10).  PDA is not considered a separate condition and therefore is not included in either of these classification systems. A clinical diagnosis cannot be given in the absence of clinical criteria. 

As research and understanding of the nature of autism progresses it is increasingly recognised that what were previously thought of as distinct conditions (subgroups) actually describe manifestations of autism. Recent diagnostic criteria now includes a much broader group of people fitting the diagnosis of ASD and has have moved away from subgroups for example;

  • Asperger’s syndrome
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDDNOS)
  • Semantic Pragmatic Disorder

towards a conceptualisation of autism which takes account of the profile some describe as PDA, without the need for other diagnoses. Essentially all ‘PDA’ characteristics are explained by ASD in the context of an individual whose need for predictability has not been met/ is not met.  The term ‘PDA’ placed the ‘problem’ within the child, however we now understand that there is a dynamic relationship between the individual and the environment and that avoidance of demand should be understood in the context of the physical and social environment. Establishing full understanding of the social impairment, sensory differences and inflexible thinking that lead to extreme anxiety in autism would be a better way forward.  Importantly, professionals would always wish to offer families an opportunity to discuss what has led them to feel that PDA is an appropriate way to describe their child’s presentation and should seek to support an individualised approach to supporting them that takes account of their individual circumstances. This will include understanding their needs and relevant support strategies.

The Scottish Government’s commitment to autistic people is and will continue to be framed within clinical guidelines and the international standards cited above.  The “symptoms” of PDA are described in ASD. The behaviours described as PDA are all compatible with the ASD diagnosis and further clinical diagnostic assessment is not available in the absence of inclusion in any internationally recognised classification systems.   

Further information and resources

Select here to access the Professional Reflection and Planning Tool (Understanding Autism) for this section.

Further resources can be found in the Professional Development section.