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Part I
Understanding autism
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Chapter 1
What is autism? (Or hello or goodbye)
Autism means different things to different people
Depending on how you view our description of autism and the autism spectrum in this opening chapter may very well influence whether you read on to the end or find alternative uses for this book very early on. Whether we use the term āperson with autismā or āautistic personā to denote the ownership of autism, or whether we talk about ādifferenceā or ādisabilityā is likely to have some bearing on how you interpret the picture of autism we present.
Of course weāre very much hoping that you will continue reading as we try to offer as broad and scientifically accurate a picture as we can of modern-day autism and our particular interest in the condition with a focus on diet and food. That being said, coupled with the often strong views held about autism and what it does and doesnāt mean to someone, it is highly unlikely that we will please all of the people all of the time so again, we reiterate that autism means different things to different people.
| Four Kingdoms of Autism (Insel, 2013) |
| Illness |
| Identity |
| Injury |
| Insight |
Dr Tom Insel, at the time of writing current director of the US National Institute for Mental Health (NIMH), quite nicely summed up the issues of differing opinions and views of autism in his blogpost on āThe Four King-doms of Autism.ā1 His discussions make mention of the heterogeneity ā the wide diversity of presentation ā that exists under the umbrella term āautismā and how this diversity has lead to certain ideological divisions which fuel the different kingdoms of thought. Importantly he talks about the concept of autism as a plural condition, whereby behavioural characteristics dynamically manifest across a spectrum of ability and disability potentially due to more than one different factor in different people. Readers may do well to keep in mind the concept of āthe autismsā in subsequent chapters of this book.
To a healthcare or health-related professional engaged in diagnosing a person or researching the condition, the term autism might be taken to mean a neurode-velopmental condition including a collection of behavioural symptoms, reflecting a diagnostic dyad of impairments: communication and social interactive issues (cumulatively known as social affect) and the presence of restricted and repetitive behaviours (see page 10 for a summary of the core features of autism). Allied to an agreed timescale of symptom onset appearing in early infancy or childhood, autism represents a disorder of development, lies along a spectrum and is generally taken to be a lifelong label.
| Schedules for diagnosing autism |
| DSM (Diagnostic & Statistical Manual) |
| ICD (International Classification of Diseases) |
Some readers might question our use of the word ādyadā to denote only two core symptoms associated with an autism diagnosis where traditionally autism was defined by a triad of symptoms. We respond to such a question by referencing the latest version of one of the primary diagnostic schedules ā the Diagnostic and Statistical Manual or DSM2 ā and the fanfare that has greeted the arrival of DSM-5. The merging of core issues in the domains related to the use of communication and social interaction into the super domain of social affect is reflective of one of several changes made to the DSM-5 description of autism3. The other commonly used schedule for diagnosing autism is the ICD (International Classification of Diseases) criteria published by the World Health Organization (WHO). Like many other conditions currently labelled solely on the strength of a personās actions and behaviours alongside a look at historical notes and other information, diagnosing an autism spectrum disorder (ASD) is often part medicine, part societal and strangely enough part art.
To a person living with autism and their family/caregivers, the term autism may reflect a slightly different description at different times across the lifespan. Depending on the severity of presented symptoms, whether the person has spoken language or capacity in other communicative skills, the likelihood of lifelong support being required and the presence or not of various comorbid conditions which can also affect quality of life, autism may carry a different meaning outside of the cold, hard diagnostic facts.
To some on the autism spectrum and their advocates, autism is to be viewed as a difference not a disability. A difference in how the world is perceived by them and indeed how they are perceived by the world around them. The focus is on accepting all kinds of minds and the neurodiversity which that entails including the message that autism is not just a condition of disorder. Building upon the disability rights movement, the emphasis is also on providing appropriate awareness and support such that autism is seen and incorporated as part of the colourful tapestry of behaviour and functioning which make up society.
In other cases, autism, its presentation and its elevated risk of comorbidities, very definitely reflects a disability. The emphasis is on how the core and other peripheral symptoms presenting in autism, sometimes in quite severe forms, can so fundamentally affect a person and their daily living. When we speak of disability, we use the term to denote that the presentation of autism so significantly impacts on a personās life that it does not allow them to fully participate in activities typical of their peers or indeed, places them at greater risk of poorer health or quality of life outcomes.
Core features of autism
Please note that this description does not serve to represent the formal diagnostic features of autism but instead describes the core features as they may present.
ā¢ Difficulty with language and communication
ā The development and appropriate use of verbal and non-verbal language.
ā The use of or interpretation of facial expressions or other communicative acts.
ā Difficulties understanding the nuances or conventions of social communication (e.g. turn-taking during conversation, literality of meaning).
ā¢ Difficulty with social interaction
ā Understanding and using appropriate gestures to regulate social interaction.
ā Issues with recognising and understanding the emotions and feelings of other across different social situations.
ā Difficulties with the development of peer relationships.
ā¢ Restricted and repetitive behaviours
ā Issues with engaging in appropriate play or related activities particularly with an imaginative component (instead showing a preoccupation with non-functional elements).
ā The presence of encompassing preoccupations which are unusually intense.
ā Adherences to rituals and routines which are often compulsive in nature and produce resistance and/or distress when changed.
Distinct from Dr Inselās description of separate kingdoms making up the autism landscape, the various ways that autism is described or talked about by the same person might not necessarily anchor that person to one particular viewpoint. It is fair to say that even when viewed as a disability, autism is still a cause for ensuring appropriate awareness, equality, rights and access to any services required. Likewise, the focus on autism as difference not disability does not exclude discussions on the very real day-to-day impact that the condition and/or its risk of comorbidities can have on a person. Indeed even opinions about autism are generally spectral rather than opposites, and with the rise and rise of the Internet and social media, everyone seemingly has a view.
Autism is not a failure to develop
Autism is a pervasive developmental condition. That is, the cluster of symptoms defining the condition is generally taken to appear and manifest in infancy or early childhood. From a diagnostic point of view, symptoms have to be present before the age of 3 years old, although with the arrival of the DSM-5 this very definite cut-off point has been relaxed to some degree.
It is important to understand that the symptoms of autism and the developmental focus of symptoms are not meant to imply that autism represents a complete failure to develop. Everyone develops. Whilst this might seem slightly at odds with certain characteristics such as the potential issues with failing to obtain spoken language in some cases for example, it is perhaps more relevant to suggest that autism represents a shift in developmental trajectory. Many if not all of the core symptoms present in autism are variably observed during typical development at differing times and under different situations, modified by all manner of factors. It is the intensity and persistence of such behaviours which marks them out as different in cases of autism and how their presence impacts over the course of a lifetime.
Likewise, the description of autism as being a pervasive condition highlights how fundamentally such differences in development are able to affect a per...
